Feminist Judgments: Health Law Rewritten [1 ed.] 9781108495097, 9781108860901, 2022030483, 2022030484, 9781108816922

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feminist judgments: health law rewritten This book demonstrates how feminist analysis can transform law in a field where paternalism, individualism, gender stereotypes, and tensions over the public– private divide shape judicial decisions. Each chapter focuses on a single court decision related to health law. The decisions concern patient autonomy, informed consent, medical and nursing malpractice, the relationships among health care professionals and the institutions where they work, communications between health care providers and the patients they serve, end-of-life care, reproductive health care, biomedical research, ownership of human tissues and cells, the influence of religious directives on health care standards, health care discrimination, equitable access to long-term care in nursing homes, equitable access to community-based alternatives, private health insurance, Medicaid coverage, the Affordable Care Act, and more. Each chapter begins with a commentary from a scholar who puts the case in historical context, summarizes the original opinion, discusses what makes the rewritten opinion feminist, and describes how a feminist approach might have altered subsequent developments in health law. The feminist judgments take the form of rewritten majority opinions, concurrences, and dissents. The opinion authors are scholars who inhabit the role of a judge deciding the case. They rely exclusively on the factual record, precedents, and scientific understanding available at the time of the original decision to show how a judge with a feminist perspective could have adjudicated the matter differently. Seema Mohapatra, JD, MPH, is the M.D. Anderson Foundation Endowed Professor in Health Law and Professor of Law at SMU Dedman School of Law. Her research focuses on biosciences and the law, assisted reproduction and surrogacy, international family and health law, health equity, and informed consent. She is the coauthor of Reproductive Technologies and the Law (2021). Lindsay F. Wiley, JD, MPH, is Professor of Law and Director of the Health Law and Policy Program at UCLA School of Law. Her research focuses on public health law and ethics and access to health care. She is the coauthor of Public Health Law: Power, Duty, Restraint (2016) and Public Health Law and Ethics: A Reader (2018).

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Feminist Judgments Series Editors Bridget J. Crawford Elisabeth Haub School of Law at Pace University Kathryn M. Stanchi University of Nevada, Las Vegas William S. Boyd School of Law Linda L. Berger University of Nevada, Las Vegas William S. Boyd School of Law

Published online by Cambridge University Press

Published online by Cambridge University Press

Feminist Judgments: Health Law Rewritten Edited by

SEEMA MOHAPATRA SMU Dedman School of Law

LINDSAY F. WILEY UCLA School of Law

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Shaftesbury Road, Cambridge cb2 8ea, United Kingdom One Liberty Plaza, 20th Floor, New York, ny 10006, USA 477 Williamstown Road, Port Melbourne, vic 3207, Australia 314–321, 3rd Floor, Plot 3, Splendor Forum, Jasola District Centre, New Delhi – 110025, India 103 Penang Road, #05–06/07, Visioncrest Commercial, Singapore 238467 Cambridge University Press is part of Cambridge University Press & Assessment, a department of the University of Cambridge. We share the University’s mission to contribute to society through the pursuit of education, learning and research at the highest international levels of excellence. www.cambridge.org Information on this title: www.cambridge.org/9781108495097 doi: 10.1017/9781108860901 © Cambridge University Press & Assessment 2022 This publication is in copyright. Subject to statutory exception and to the provisions of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press & Assessment. First published 2022 A catalogue record for this publication is available from the British Library Library of Congress Cataloging-in-Publication Data names: Wiley, Lindsay F., 1977– author. | Mohapatra, Seema, author. title: Feminist judgments : health law rewritten / edited by Seema Mohapatra, SMU Dedman School of Law, Dallas; Lindsay Wiley, UCLA School of Law, Los Angeles. description: New York, NY : Cambridge University Press, 2022. | Series: Feminist judgments series | Includes bibliographical references and index. identifiers: lccn 2022030483 (print) | lccn 2022030484 (ebook) | isbn 9781108495097 (hardback) | isbn 9781108816922 (paperback) | isbn 9781108860901 (epub) subjects: lcsh: Medical care–Law and legislation–United States–Cases. | Feminist jurisprudence–United States. | BISAC: LAW / Health classification: lcc kf3821 .f46 2022 (print) | lcc kf3821 (ebook) | ddc 344.7304/1–dc23/eng/20220831 LC record available at https://lccn.loc.gov/2022030483 LC ebook record available at https://lccn.loc.gov/2022030484 isbn 978-1-108-49509-7 Hardback isbn 978-1-108-81692-2 Paperback Cambridge University Press & Assessment has no responsibility for the persistence or accuracy of URLs for external or third-party internet websites referred to in this publication and does not guarantee that any content on such websites is, or will remain, accurate or appropriate.

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Contents

Advisory Panel for Feminist Judgments Series Titles in the US Feminist Judgments Series Advisory Panel for Feminist Judgments: Health Law Rewritten

page ix xi xiii

List of Contributors

xv

Acknowledgments

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1

Introduction Seema Mohapatra and Lindsay F. Wiley

2

Schloendorff v. Society of New York Hospital Commentary: Danielle Pelfrey Duryea Judgment: Kelly K. Dineen

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Reynolds v. McNichols Commentary: Aziza Ahmed Judgment: Wendy E. Parmet

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Conservatorship of Valerie N. Commentary: Cynthia Soohoo and Sofia Yakren Judgment: Doriane Lambelet Coleman

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Bouvia v. Superior Court Commentary: Joan H. Krause Judgment: Barry Furrow

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Moore v. Regents of the University of California Commentary: Jessica Roberts Judgment: Lisa C. Ikemoto

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Contents

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Linton v. Commissioner of Health and Environment Commentary: Ruqaiijah Yearby Judgment: Gwendolyn Roberts Majette

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Olmstead v. L.C. ex rel. Zimring Commentary: Doron Dorfman Judgment: Becka Rich

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Doe v. Mutual of Omaha Commentary: Christina S. Ho Judgment: Valarie Blake

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Smith v. Rasmussen Commentary: Heather Walter-McCabe Judgment: Craig Konnoth

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Burton v. State Commentary: Greer Donley Judgment: Nadia Sawicki

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National Federation of Independent Business v. Sebelius Commentary: Mary Ann Chirba and Alice A. Noble Judgment: Elizabeth Weeks

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Means v. United States Conference of Catholic Bishops Commentary: Maya Manian Judgment: Leslie C. Griffin

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Does v. Gillespie Commentary: Elizabeth Kukura Judgment: Jennifer Oliva and Melissa Alexander

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National Institute of Family and Life Advocates v. Becerra Commentary: Brietta R. Clark Judgment: Sonia Suter

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Advisory Panel for Feminist Judgments Series

Kathryn Abrams, Herma Hill Kay Distinguished Professor of Law, University of California, Berkeley, School of Law Katharine T. Bartlett, A. Kenneth Pye Professor of Law, Duke University School of Law Mary Anne Case, Arnold I. Shure Professor of Law, The University of Chicago Law School April L. Cherry, Professor of Law, Cleveland-Marshall College of Law Margaret E. Johnson, Associate Dean for Experiential Education and Professor of Law, University of Baltimore School of Law Sonia Katyal, Associate Dean of Faculty Development and Research and Distinguished Haas Chair, University of California, Berkeley, School of Law Nancy Leong, Professor of Law and William M. Beaney Memorial Research Chair, University of Denver Sturm College of Law Rachel Moran, Distinguished Professor of Law, University of California Irvine School of Law Angela Onwuachi-Willig, Dean and Ryan Roth Gallo & Ernest J. Gallo Professor of Law, Boston University School of Law. Nancy D. Polikoff, Professor of Law Emerita, American University Washington College of Law Daniel B. Rodriguez, Harold Washington Professor of Law, Northwestern University Pritzker School of Law

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Advisory Panel for Feminist Judgments Series

Susan Deller Ross, Professor of Law, Georgetown University Law Center Dean Spade, Wismer Professor of Gender & Diversity and Professor of Law, Seattle University School of Law Robin L. West, Frederick J. Haas Professor of Law and Philosophy, Georgetown University Law Center Verna L. Williams, Dean and Nippert Professor of Law, University of Cincinnati College of Law

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Titles in the US Feminist Judgments Series

Feminist Judgments: Rewritten Opinions of the United States Supreme Court Kathryn M. Stanchi, Linda L. Berger, and Bridget J. Crawford eds. Feminist Judgments: Rewritten Tax Opinions Bridget J. Crawford and Anthony C. Infanti eds. Feminist Judgments: Reproductive Justice Rewritten Kimberly M. Mutcherson ed. Feminist Judgments: Family Law Opinions Rewritten Rachel Rebouché ed. Feminist Judgments: Rewritten Torts Opinions Martha Chamallas and Lucinda Finley eds. Feminist Judgments: Rewritten Employment Discrimination Opinions Ann C. McGinley and Nicole Buonocore Porter eds.

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Advisory Panel for Feminist Judgments: Health Law Rewritten

Emily Benfer, Senior Policy Advisor at the White House, American Rescue Plan Implementation Team and Visiting Professor of Law and Public Health, Wake Forest University Marie C. Boyd, Associate Professor of Law, University of South Carolina School of Law Erin Fuse Brown, Catherine C. Henson Professor, Professor of Law, and Director of the Center for Law, Health and Society, Georgia State University College of Law Kathy Cerminara, Professor of Law, Shepard Broad College of Law, Nova Southeastern University Brietta R. Clark, Professor of Law and J. Rex Dibble Fellow, Loyola Law School Abbe R. Gluck, Alfred M. Rankin Professor of Law and Faculty Director of Solomon Center for Health Law and Policy, Yale Law School; Professor of Internal Medicine (General Medicine), Yale Medical School Allison K. Hoffman, Professor of Law and Deputy Dean, University of Pennsylvania Law School Nicole Huberfeld, Edward R. Utley Professor of Health Law, Boston University School of Public Health; Professor of Law, Boston University School of Law Lisa C. Ikemoto, Martin Luther King Jr. Professor of Law, University of California Davis School of Law Craig Konnoth, Professor of Law, University of Virginia School of Law xiii

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Advisory Panel for Feminist Judgments: Health Law Rewritten

Daniela Kraiem, Assistant Dean for Career and Professional Development and Practitioner-in-Residence, American University Washington College of Law Dayna Bowen Matthew, Dean and Harold H. Greene Professor of Law, George Washington University Law School Elizabeth McCuskey, Professor of Health Law, Boston University School of Public Health Wendy E. Parmet, Matthews Distinguished University Professor of Law and Director of the Center for Health Policy and Law, Northeastern University School of Law; Professor of Public Policy and Urban Affairs, Northeastern University School of Public Policy and Urban Affairs Jessica Roberts, Professor of Law, Leonard H. Childs Chair in Law, Professor of Medicine, and Director of the Health Law and Policy Institute, University of Houston Law Center Nadia Sawicki, Georgia Reithal Professor of Law and Academic Codirector of the Beazley Institute for Health Law and Policy, Loyola University School of Law Stacey Tovino, William J. Alley Professor of Law, University of Oklahoma College of Law Elizabeth Weeks, Associate Provost for Faculty Affairs and Charles H. Kirbo Chair in Law, University of Georgia School of Law Leslie E. Wolf, Distinguished University Professor and Professor of Law, Georgia State University College of Law Ruqaiijah Yearby, Professor of Law and Kara Trott Professor in Law at Ohio State University Moritz College of Law

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Contributors

Aziza Ahmed is a professor of law at Boston University School of Law. She was selected as a fellow with the Program in Law and Public Affairs at Princeton University for 2017–2018. Professor Ahmed has consulted with UN agencies and nongovernmental organizations and written on abortion, reproductive health, and the intersection of law, health, and science. Melissa Alexander is a professor of law at the University of Wyoming College of Law. She was previously a business litigation partner at Bradley Arant Boult Cummings, LLP, and served on the Executive Counsel of the Litigation Section of the Tennessee Bar Association. Professor Alexander has written on the intersection of bioethics, health law, and public policy. Valarie Blake is a professor of law at West Virginia University College of Law, where her scholarship has focused on health care law. She was previously a visiting professor at Duquesne School of Law and an ethics senior research associate for the American Medical Association. Professor Blake has also worked at the Cleveland Clinic as an Advanced Bioethics Fellow. Mary Ann Chirba is Professor of the Practice and John C. Ford, SJ, Distinguished Scholar at Boston College Law School. She holds a joint faculty appointment with the Tufts Medical School and is an adjunct professor at New York University Law School. She was lead author of Health Care Reform: A Comprehensive Guide to the Affordable Care Act and Its Implementing Regulations, coauthored with Alice A. Noble and Michael M. Maddigan. Brietta R. Clark is a professor of law and J. Rex Dibble Fellow at the Loyola Law School, Los Angeles, and an affiliate faculty member of the Bioethics Institute at Loyola Marymount University. She previously worked on health

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care transactions and regulatory compliance at the Los Angeles office of Sidley, Austin, Brown & Wood. Her expertise is in health law and inequality. Doriane Lambelet Coleman is a professor of law at Duke University School of Law. She has published in numerous journals on topics related to women, children, medicine, and the law, as well as sports law, and is an expert on antidoping rules. Professor Coleman is currently working on the differences between biological sex and gender, and their implications for elite sports, education, and medicine. Kelly K. Dineen is a professor of law and Director of the Health Law Program at Creighton University School of Law. She holds a PhD, with distinction, in health care ethics, as well as a JD. Her interdisciplinary scholarship on the impact of legal and policy decision-making on health care quality has been published in leading health law journals. Greer Donley is an associate professor of law at the University of Pittsburgh Law School and Director of the joint degree program in law and bioethics. She worked previously as an associate at Latham & Watkins, LLP, and was a fellow at the Department of Bioethics at the National Institutes of Health. Her scholarship has examined health care issues including prenatal end-of-life decision-making, abortion care during pandemics, and contraceptive equity. Doron Dorfman is an associate professor of law at Seton Hall University School of Law. His scholarship combines doctrinal and social science approaches to disability and health law, with a focus on the impact of stigma on disempowered communities. Professor Dorfman has won numerous writing awards, including the Burton Law360 Distinguished Legal Writing Award, and his work has been cited by federal courts and the Israeli Supreme Court. Danielle Pelfrey Duryea is Director of the Compliance Policy Unit and a lecturer and clinical instructor at the Boston University School of Law. She taught previously at the University of Buffalo School of Law, where she established the Health Justice Law & Policy Clinic, and practiced at Ropes & Gray, LLP, where she was a founding lead for the firm’s pro bono legal– medical partnerships. Barry Furrow is a professor of law and Director of the health law program at Drexel University Thomas R. Kline School of Law. He is the lead author of the leading casebook, Health Law: Case, Materials and Problems, and coauthor of Health Law, which the US Supreme Court has cited three times. He was selected by the US Department of State Bureau of Educational and

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Cultural Affairs in 2018 to serve as a Fulbright Specialist, consulting on health law programs around the world. Leslie C. Griffin is William S. Boyd Professor of Law at the University of Las Vegas William S. Boyd School of Law. Her interdisciplinary scholarship has focused on law and religion. She authored the casebooks Law and Religion: Cases and Materials and Practicing Bioethics Law, the latter as coauthor alongside Joan H. Krause. Professor Griffin’s recently published articles have examined topics including brain injury and religious exemptions to marriage laws. Christina S. Ho is a professor of law at Rutgers Law School. She worked previously at the O’Neill Institute for National and Global Health Law at Georgetown, as Country Director for the Clinton Foundation’s China program and on Senator Hillary Rodham Clinton’s legislative staff, as well as on the Clinton administration’s White House Domestic Policy Council. Lisa C. Ikemoto is Martin Luther King Jr. Professor of Law at the University of California Davis School of Law, a bioethics associate of the UC Davis Health System Bioethics Center and a faculty associate of the UC Davis Center for Science and Innovation Studies. Her scholarship is focused on the ways in which race and gender mediate biomedical technology use and health care, with her recent work particularly investigating reproductive tourism, human gamete use and informed consent. Craig Konnoth is a professor of law at the University of Virginia School of Law. He was formerly Deputy Solicitor General at the California Department of Justice, working on cases involving the Affordable Care Act contraceptive mandate and sexual orientation change efforts. Professor Konnoth is the author of past and upcoming publications on health and civil rights and health data regulations. Joan H. Krause is Dan K. Moore Distinguished Professor of Law at the University of North Carolina at Chapel Hill School of Law, a professor in the Department of Social Medicine at the UNC School of Medicine and an adjunct professor in the Department of Health Policy and Management at the UNC Gillings School of Global Public Health. She has published on issues including health care fraud and abuse, health care organization and regulation, and bioethics and coauthored Practicing Bioethics Law with Leslie C. Griffin. Elizabeth Kukura is an assistant professor of law at Drexel University Thomas R. Kline School of Law. She was previously a Freedman Fellow at Temple

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University Beasley School of Law and an associate at Bryan Cave, LLP, in New York. Her past and upcoming published research has focused on health and family law, especially on reproductive health and childbirth. Gwendolyn Roberts Majette is an associate professor of law at ClevelandMarshall College of Law. Her scholarship on topics such as patients’ rights and health care reform has been relied upon by the US Commission for Civil Rights, the Department of Health and Human Services and the World Health Organization. Professor Majette’s published articles have addressed the Affordable Care Act’s approach to eliminating health disparities, and international lessons for American primary care. Maya Manian is a professor of law and Director of the Health Law and Policy Program at American University Washington College of Law. She is completing a PhD in sociology at the University of California, San Francisco. Her scholarship investigates links between constitutional, family and health care law, with a special focus on reproductive health care. Professor Manian was previously a Blackmun Fellowship Attorney at the Center for Reproductive Rights. Alice A. Noble is a practicing attorney, an adjunct professor at Boston College Law School, and Senior Lecturer in the Legal Studies Program and Adjunct Lecturer at the Heller School in Brandeis University. She is an expert on the Affordable Care Act and is the coauthor of Health Care Reform: A Comprehensive Guide to the Affordable Care Act and Its Implementing Regulations, together with Alice A. Noble and Michael M. Maddigan. Jennifer Oliva is a professor of law at University of California Hastings College of the Law with a specialty in health law and policy, as well as FDA law, evidence and complex litigation. She was previously Deputy State Solicitor of Delaware and a Rhodes and Truman Scholar. Professor Oliva received the 2019 Truman Scholarship Foundation Ike Skelton Award for commitment to public service and was 2020–2021 Chair of the AALS Section on Law and Mental Disability. Wendy E. Parmet is Matthews Distinguished University Professor of Law and Director of the Center for Health Policy and Law at Northeastern University School of Law, and Professor of Public Policy and Urban Affairs at the Northeastern University School of Public Policy and Urban Affairs. She has published articles and books on public health, bioethics, discrimination and AIDS law and acted as co-counsel in the first AIDS/HIV case under the ADA to reach the US Supreme Court.

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Becka Rich is an assistant dean for the law library and technology services and assistant teaching professor at Drexel University Thomas R. Kline School of Law. Her research interests include education of students with disabilities, disability law and bioethics. Professor Rich previously served as Senior Associate Director and Interim Director of the Panza Maurer Law Library at Nova Southeastern University. Jessica Roberts holds the Leonard H. Childs Chair in Law and is Director of the Health Law and Policy Institute at the University of Houston Law Center. She is also a professor in the Department of Health Systems and Population Health Sciences at the University of Houston College of Medicine. Professor Roberts researches the intersection of health law, ethics and social justice and has coauthored Healthism: Health-Status Discrimination and the Law with Elizabeth Weeks. Nadia Sawicki is Georgia Reithal Professor of Law at Loyola University Chicago School of Law and Academic Co-director of the Beazley Institute for Health Law and Policy. She has expertise in health law and bioethics, and her research has addressed topics including definitions of professional roles and ethical norms in medicine and the state’s role in enforcing them. Cynthia Soohoo is a professor of law and Co-director of the Human Rights and Gender Justice Clinic at the City University of New York School of Law. She is an expert on reproductive justice, women’s human rights and human rights advocacy in the USA. Professor Soohoo was previously the Director of the US Legal Program at the Center for Reproductive Rights. Sonia Suter is Kahan Family Research Professor of Law and Founding Director of the Health Law Initiative at the George Washington University School of Law. She won the Henry M. Bates Memorial Scholarship at the University of Michigan Law School. A former genetic counselor, Professor Suter specializes in legal issues in medicine and genetics as well as bioethics. Heather Walter-McCabe is an associate professor of law and social work at Wayne State University Law School. Her interdisciplinary scholarship makes complex legal issues and research findings accessible to population health practitioners and advocates. Professor Walter-McCabe sits on the Executive Board of the American Public Health Association. Elizabeth Weeks is Associate Provost for Faculty Affairs at the University of Georgia and holds the Charles H. Kirbo Chair in Law at the University of Georgia School of Law. Formerly an associate working in the Health Industry Group at Vinson & Elkins in Houston, Professor Weeks has served as Chair of

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the Association of American Law Schools Section on Law, Medicine and Health Care. She coauthored Healthism: Health-Status Discrimination and the Law with Jessica Roberts. Sofia Yakren is a professor of law at the City University of New York School of Law, where she teaches lawyering, torts and disability law. She was previously a faculty member of American University Washington College of Law, a civil rights litigator at Beldock Levine & Hoffman, LLP, and an Arthur Liman Public Interest Fellow at the Mental Health Project of the Urban Justice Center. Ruqaiijah Yearby is a professor of law and holds the Kara Trott Professorship in Law at Ohio State University Moritz College of Law. She specializes in racial disparities in health care, political economy of health care and social justice in medical research, with a research focus on the ways in which social inequities and the health care delivery system affect access to health care.

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Acknowledgments

We would like to thank Will Alter, Levi Baysinger, Margaret Chavez, Erin Donnelly, Paige Ferise, Janie Marso, Julianne Nolan, and Elizabeth Raterman for their excellent research assistance. We appreciate Bridget Crawford for going above and beyond the call of duty in her role as the series editor assigned to this volume. We thank our lucky stars for the good fortune of working with the phenomenal group of scholars who contributed to this volume as advisory panel members and authors. We are deeply grateful to our families for their support and understanding while we worked on this project in the midst of monumental disruption to all of our lives.

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1 Introduction seema mohapatra & lindsay f. wiley

what is health law? As a distinct field of study and practice, health law is still relatively new, and its boundaries continue to be contested. As recently as 2006, Einer Elhague questioned whether health law could “become a coherent field of law.”1 The fact that Elhague’s musings appeared in a symposium dedicated to the idea that the “once vibrant . . . and fresh” subject of health law was haunted by a “specter of exhaustion” indicates the contested nature of the “field-ness” of this field.2 Its boundaries are even more hotly disputed. Is health law limited to the relationships among health care professionals, patients, the institutions where they meet, and the payers who finance their encounters? Or does it also encompass legal issues related to public health and the social determinants of health, which social epidemiology demonstrates3 play an even greater role than health care in shaping outcomes?4 As feminist health law scholars, we “view health law as an inherently . . . expansive field.”5 For the purposes of this volume, however, and in light of the potential for other areas – such as poverty law, housing law, and employment law – to generate Feminist Judgments

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Einer R. Elhague, Can Health Law Become a Coherent Field of Law?, 41 Wake Forest L. Rev. 365, 365 (2006). Mark Hall, Carl Schneider et al., Rethinking Health Law: Introduction, 41 Wake Forest L. Rev. 341 (2006). See Lisa F. Berkman & Ichiro Kawachi, A Historical Framework for Social Epidemiology: Social Determinants of Population Health, in Social Epidemiology 1, 2 (Lisa F. Berkman, Ichio Kawachi et al., eds., 2nd ed. 2014). See Rachel Rebouche & Scott Burris, The Social Determinants of Health, in Oxford Handbook of U.S. Health Law 1097–1112 (I. Glenn Cohen, Allison K. Hoffman et al., eds., 2017). Seema Mohapatra & Lindsay F. Wiley, Feminist Perspectives in Health Law, 47 J. L. Med. & Ethics 103, 103 (2020).

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Seema Mohapatra & Lindsay F. Wiley

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books of their own, we have narrowed our focus to more traditional health law topics. Nonetheless, we view the insights of social epidemiology regarding the influence of social, economic, and environmental factors on health as “an invitation to engage with the rich literature of critical legal theories that view law as an expression of social power.”6 This book is part of a broader movement to engage critical perspectives – including feminist legal theory, critical race theory, critical disability studies, LatCrit, ClassCrit, queer theory, and more – in health law and policy debates. As we argued in an article we wrote at the inception of this book project: [e]xamples of how health laws and policies have reflected and reinforced white male patriarchy abound, including the conceptualization of decisions about reproductive health as exceptions to general principles protecting bodily and decisional autonomy, restrictions on the practice of midwifery and nursing that privileged the professionalization of medical practice, and the notion that public measures to support access to health care and healthy living conditions must be justified by exceptional circumstances against a background norm of personal responsibility.7

Health law is a dynamic field ripe for the application of feminist perspectives. From a field dominated by private, common-law governance of relationships among patients, providers, and payers, health care has rapidly become one of the most heavily regulated sectors of the economy. Health care financing is transitioning away from its traditional commitment to actuarial fairness toward a commitment to mutual aid. The health care system’s growing reliance on collective financing raises thorny questions about which community members to include and which conditions to cover. Health law scholarship is also in the midst of a renaissance. A growing number of professors and researchers are offering deep commentary on four competing rationales: professional autonomy (in which the law shields physicians’ decisions from outside meddling), patient autonomy (in which the law empowers the individual choices of some, but not all, patients with regard to some, but not all, health care decisions), market power (in which the law privileges economic analysis of the central problems of health care quality, cost, and access), and the emerging perspective of health justice (in which the law centers social concerns that represent more than the mere aggregation of individual patient interests). Feminist legal theory and critical race feminism provide crucial but underexplored frameworks for assessing and enriching

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Introduction

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these competing rationales at a time when litigants are calling on judges to craft resolutions to disputes that will reverberate for generations. In addition to demonstrating the relevance of feminist perspectives, this volume also highlights the continued importance of courts in the health law realm. Over the last decade, sweeping health policy reforms have drawn students’ and researchers’ attention to legislatures and regulators, pulling focus away from the field’s common-law roots. As these reforms mature, however, judges and courts are again taking center stage, setting up the next decade as a crucial period for court judgments with massive implications for health, feminism, and social justice on issues such as Medicaid eligibility, access to reproductive health care, and protections for people with preexisting conditions. By reflecting on how the courts of the past could have shaped the development of today’s health law, we hope that students, researchers, and advocates will gain a new perspective on current and future disputes before the courts.

what is a feminist judgment? Following the model of the Feminist Judgments series, the purpose of this book is to broaden to health law the inquiry that the original volume (Feminist Judgments: Rewritten Opinions of the United States Supreme Court) began. Other books in the series have focused on tax law, family law, trusts and estates, employment discrimination law, tort law, and reproductive justice. The original volume showed that feminist perspectives could have changed the development of American constitutional law if justices had applied them in important Supreme Court cases. This health law volume demonstrates how feminist theories and methods can transform law in a field where paternalism, individualism, gender stereotypes, and tensions over the public-private divide shape judicial decisions about health care. Each chapter focuses on a single court decision. The decisions concern patient autonomy, informed consent, medical and nursing malpractice, the relationships among health care professionals and the institutions where they work, communications between health care providers and the patients they serve, end-of-life care, reproductive health care, biomedical research, ownership of human tissues and cells, the influence of religious directives on health care standards, health care discrimination, equitable access to long-term care in nursing homes, equitable access to community-based alternatives, private health insurance, Medicaid coverage, the Affordable Care Act, and more. Each chapter begins with a commentary from a scholar who puts the case in historical context, summarizes the original opinion, discusses what makes

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Seema Mohapatra & Lindsay F. Wiley

the rewritten opinion feminist, and describes how a feminist approach might have altered subsequent developments in health law. The feminist judgments take the form of rewritten majority opinions, concurrences, and dissents. The opinion authors are scholars who inhabit the role of a judge deciding the case. They rely exclusively on the factual record, precedents, and scientific understanding available at the time of the original decision to show how a judge with a feminist perspective could have adjudicated the matter differently. The commentaries and rewritten opinions are presented by separate authors, which fosters an inherently collaborative approach to each case. Collaboration does not always result in consensus; sometimes, the opinion author and the commentary author may disagree about what a feminist approach to the case should be. Nonetheless, the iterative process – whereby feminist judgment authors and commentary authors read and responded to each other’s drafts – enriches the analysis of both halves of each chapter in this volume. The selection process for the health law cases presented in this volume was also collaborative. We began by putting together a list of health law cases that implicate gender, culled from our own teaching, knowledge, and scholarship. Many of the cases feature prominently in the major health law textbooks and casebooks used by undergraduate, law, and health sciences students across the country. We reflected on the health law field: its breadth; the central tensions it concretizes; and the implications of gender, misogyny, patriarchy, feminism, and intersectionality for its core rationales. We assembled a distinguished and diverse advisory panel to evaluate the cases that we were considering and recommend additional cases. Emily Benfer, Marie Boyd, Erin Fuse Brown, Kathy Cerminara, Brietta Clark, Abbe Gluck, Allison Hoffman, Nicole Huberfeld, Lisa Ikemoto, Craig Konnoth, Daniela Kraiem, Dayna Bowen Matthew, Elizabeth McCuskey, Wendy Parmet, Jessica Roberts, Nadia Sawicki, Stacey Tovino, Elizabeth Weeks, Leslie Wolf, and Ruqaiijah Yearby all served as advisers. Some of these scholars later agreed to serve as opinion or commentary authors. Some of the cases we selected for this volume do not have an explicit or obvious connection to gender, but we felt that there was a feminist aspect of the case that needed to be brought to the forefront. For example, the Schloendorff v. Society of New York Hospitals case is cited in almost every health law text as being the first to articulate the principle of “informed consent.” We include it here for that proposition but also for its heavily gendered analysis of the relationship between nursing and medicine and the implications of that analysis for patient autonomy and quality of care. Another example is National Federation of Independent Business v. Sebelius, a

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Introduction

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Supreme Court case that upheld the individual mandate of the Affordable Care Act but struck down its expansion of Medicaid eligibility, which Congress designed to be mandatory for the states. Although gender implications are not apparent on the surface of this case, the effect of leaving Medicaid expansion to state discretion is disproportionately borne by people capable of becoming pregnant8 who live in low-income households. They have a greater-than-average need for health care while also being called on to bear the burdens of caring for other family members in need. Moreover, the shift from actuarial fairness to mutual aid and from personal responsibility to collective responsibility for health that was on trial in the case is ripe for examination from feminist perspectives that emphasize shared vulnerability and a public ethic of care. After narrowing down our list of cases, we issued a public call for authors. We invited prospective authors to indicate the cases they were interested in working on and how they would approach the task of rewriting the judgment from a feminist perspective (for opinions) or the feminist methods or themes they would highlight (for commentaries). After selecting authors and soliciting abstracts, we held a workshop hosted by Indiana University Robert H. McKinney School of Law in December 2018, which most of our authors attended. The workshop provided an opportunity to discuss the application of feminist theories and methods to the cases included in the volume and to workshop chapter abstracts. We did not provide any restrictions or specific instructions about what qualifies as “feminist.” Authors have taken their opinions and commentaries in exciting, creative directions, within the rules of the project: As with the original Feminist Judgments volume, the rewritten health law opinions in this book rely on the same factual record and precedents that bound the original court at the time of the opinion. The opinion authors bring feminist perspectives to bear on their analysis of the facts of the cases and the relevant laws and precedents in force at the time of the original decision. In addition to applying feminist legal theories, many of the rewritten opinions featured in this volume use distinctively feminist methods. In particular, several opinions feature storytelling that centers the lived experience of the litigants and other affected individuals. One of the underlying claims of this volume is that judicial experiences, perspectives, and reasoning processes affect even seemingly objective questions, like whether a

8

We use the term woman to include anyone who identifies and experiences life as a woman. We also use terms such as pregnant people and people capable of becoming pregnant to include people who do not identify as women. See Chase Strangio, Can Reproductive Trans Bodies Exist?, 19 CUNY L. Rev. 223, 230–232 (2016).

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requested benefit is covered by the terms of a health insurance policy or whether a physician’s conduct comports with customary practice. The rewritten opinions in this book demonstrate that incorporating feminist theories and methods into the adjudication of health law disputes generates more equitable, responsive, and fully informed judicial decision-making.

a road map for the book To guide the reader, we provide a brief overview of the chapters included in this volume, highlighting cross-cutting doctrinal and theoretical themes. The text in this section draws heavily from abstracts originally submitted by the authors whose work is featured in this book. We present the cases in chronological order, rather than siloing them by feminist or health law themes. Taken together, these rewritten opinions form a kind of alternate history of what health law could have been – and could still become in the future. We begin with Schloendorff v. Society of New York Hospitals,9 a 1914 New York Court of Appeals decision frequently cited as the foundational case establishing a patient’s common-law right to bodily autonomy. But Judge Benjamin Cardozo’s assertion that “every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault for which he is liable in damages”10 was mere dicta. In affirming a directed verdict for the hospital where the plaintiff’s uterus was removed without her consent, Cardozo infantalized a night nurse and deemed her awareness of the patient’s objection to surgery insufficient to put the hospital on notice that an independent-contractor surgeon was planning a non-consensual hysterectomy. In her feminist judgment, Professor Kelly Dineen – who worked for several years as a practicing nurse and earned a doctoral degree in health care ethics prior to joining the legal academy – unearths a treasure trove of contemporaneous sources that establish the nursing function as an independent basis for duties to patients for which the hospital may be held vicariously liable. By authoring a dissent, rather than rewriting the majority opinion, Dineen creates space to directly confront Cardozo’s mischaracterization of the relationships among and responsibilities of nurses, physicians, and hospitals with regard to patient care. In her commentary, Professor Danielle Pelfrey Duryea – whose scholarly interests include interprofessional education as well as gender, race, and critical 9 10

105 N.E. 92 (N.Y. 1914). Id. at 93.

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theory – situates Cardozo’s derision of nurses and Dineen’s restoration of the nursing function as a distinct basis for liability within the emergence of “modern nursing” as a devalued feminine counterpart to masculine, valorized “modern medicine” in the second half of the nineteenth century. Next, we turn to Reynolds v. McNichols,11 a 1973 opinion from the Tenth Circuit Court of Appeals. Although the plaintiff was never convicted of prostitution, she was held, examined, and involuntarily treated for sexually transmitted infections under the city of Denver’s “hold and treat” ordinance several times between 1970 and 1972, in the absence of a confirmed diagnosis of any infection. The Tenth Circuit rejected her due process and equal protection challenges to the ordinance, noting that the “fact that the plaintiff was a prostitute is of crucial significance” and concluding there was no sex discrimination, even though the city did not detain the plaintiff’s male clients. In her feminist rewrite of the majority opinion, Professor Wendy Parmet, a public health and constitutional law scholar, questions the health officials’ assumptions that female sex workers are “the primary source of venereal disease” and that the city can only protect the public’s health by forcibly treating them. Parmet relies on precedents invalidating discriminatory public health interventions, prohibiting discrimination on the basis of sex, and protecting the rights to choose abortion and contraception. She holds that the application of the ordinance to the plaintiff was discriminatory and that, under the circumstances, the defendants’ forced treatment of the plaintiff violated her right to privacy and their failure to obtain a warrant before forcing her to submit to a medical examination or remain in detention violated the Fourth Amendment’s prohibition on unreasonable searches. In her commentary on Reynolds, Professor Aziza Ahmed, a legal historian and health law scholar, situates the case in terms of historical responses to sex work under the banner of public health. Conservatorship of Valerie N.12 is the next case in this volume. The original 1985 opinion from the California Supreme Court concerned an “adult developmentally disabled daughter,” whose parents wished to have her surgically sterilized because she was (according to the parents) sexually aggressive toward men and other forms of contraception either made her “ill” or were not feasible for her.13 Although the California Supreme Court held that California law did not authorize the sterilization of Valerie and, therefore, the trial court had properly denied the parents’ petition, the case is 11 12 13

488 F.2d 1378 (10th Cir. 1973). 707 P.2d 760 (Cal. 1985) (en banc). Id. at 762.

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nonetheless ripe for a feminist rewrite. Professor Doriane Lambelet Coleman’s feminist rewrite corrects the original opinion’s failure to center Valerie’s own desires for physical intimacy and perhaps sexual liberty. Coleman – whose interdisciplinary scholarship focuses on women, medicine, and sex – demonstrates how feminism requires attention not only to women’s issues in general but also to the woman herself, and not only to childbearing (or not) but also to sexuality separate from its procreative aspects. Professors Cynthia Soohoo and Sofia Yakren’s commentary situates the case in terms of how sexism and ableism shape attitudes toward sexuality, reproduction, and health care decision-making powers of women with disabilities. It also discusses the evolving understanding of capacity to make medical treatment decisions and alternatives to traditional surrogate decision-making. Soohoo and Yakren are colleagues at the City University of New York Law School, where Soohoo codirects the Human Rights and Gender Justice Clinic and Yakren teaches disability law, among other subjects. In the following chapter, we turn to Bouvia v. Superior Court,14 a California state court decision from 1985 in which a twenty-eight-year-old quadriplegic woman sought to have a feeding tube removed and to refuse any further lifesaving measures. The original opinion held that a competent adult – male or female – has the right to refuse life-sustaining treatment. The original decision’s description of “the ignominy, embarrassment, humiliation and dehumanizing aspects created by her helplessness”15 prompts this chapter’s authors to question whether the original court supported Bouvia’s decision because of her right to choose or because the justices believed the life of a woman who was no longer capable of performing the roles traditionally expected of her was not, in fact, worth living. Professor Barry Furrow – one of the founding coauthors of a health law casebook in which Bouvia is prominently featured – proffers a poetic feminist rewrite focusing on the factors that were important to Bouvia, rather than her inability to perform the roles that concerned the original court. Furrow also considers whether recognizing an autonomy “right” in this case ignores the larger issue of lack of resources to support disabled people, which led Bouvia to seek a court order to end her life after multiple failed attempts to access the care she needed in a non-institutional setting. Professor Joan Krause’s commentary discusses how the original opinion simply noted without comment the county’s “fruitless” efforts to find Bouvia an apartment with live-in or visiting nurse assistance or identify other options. Krause, whose scholarly work focuses on health law and 14 15

225 Cal. Rptr. 297 (Cal. Ct. App. 1986). Id. at 305.

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women and the law, illuminates the original court’s decision to focus on the principle of personal autonomy to resolve this dispute – and thus to ignore any broader public responsibilities to the disabled community. The subject of our next chapter is Moore v. Regents of University of California,16 a California Supreme Court case from 1990 adjudicating the claims of a patient whose tissues were used to produce a patented immortal cell line. Though Moore consented to several procedures between 1976 and 1983, his physician did not inform him that his cells were valuable to the physician’s research and economic interests. The original opinion recognized Moore’s claims for breach of fiduciary duty and informed consent but rejected his claim for conversion (a tort claim for theft) because recognizing such a claim would “hinder research by restricting access to the necessary raw materials.”17 In her feminist judgment for the majority, Professor Lisa Ikemoto, a scholar whose work highlights how biomedical technology interacts with race and gender, illuminates the role of informed consent in transforming the doctor-patient relationship from one that is paternalistic to one premised on patient rights. Her account recognizes the role of the women’s health movement in achieving that transformation. In recognizing the plaintiff’s property-based tort claim, she also discusses how the grievance Moore is expressing is about exploitation, by an industry – the biotechnology industry – based on commercializing cells and tissues. In her commentary, Professor Jessica Roberts, whose scholarship focuses on people’s legal interests in their genetic data, highlights that courts have recently become more receptive to recognizing robust legal rights for individuals who provide tissue and data for research purposes. Roberts notes that if Moore had adopted a feminist approach, this development would have arrived much sooner. In the next chapter, we turn to Linton v. Commissioner of Health & Environment,18 a 1965 case from the Sixth Circuit Court of Appeals that grappled with disparate-impact racial discrimination in a state Medicaid program. The Tennessee Medicaid program covered the skilled nursing facility care that the Linton plaintiffs required, but the state allowed nursing facilities accepting Medicaid payments to “certify” a limited number of beds for Medicaid patients (for whom the facilities typically received lower reimbursement rates). The plaintiffs sued on behalf of adversely affected Medicaid patients, arguing that the limited bed policy violated the federal Medicaid statute and had a disparate impact on black Medicaid recipients in violation of 16 17 18

793 P.2d 479 (Cal. 1990). Id. at 494. 65 F.3d 508 (6th Cir. 1995).

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Title VI of the Civil Rights Act. In the original opinion upholding the remedial plan adopted by the lower court, the Sixth Circuit Court of Appeals failed to adequately address the petitioning facilities’ challenge to the district court’s factual finding of disparate impact. The original opinion sidestepped the issue, asserting that it was of no consequence whether the legal predicate for the remedial plan was a disparate-impact violation of Title VI or the less controversial violation of the federal Medicaid statute. Professor Gwendolyn Majette, whose scholarship focuses on access to health care, offers a feminist opinion concurring in the judgment that corrects the Sixth Circuit’s failure to address the Title VI issue. Majette provides a fuller, more comprehensive analysis that addresses the intersection of gender, race, class, and age. Professor Ruqaiijah Yearby, who has written extensively on racism as a social determinant of health, provides the commentary. Yearby explores whether the opinion in Linton could have done more to ensure that the unique harms experienced by patients because of their race would be fully addressed in the remedial plan. It may surprise some readers to see Olmstead v. L.C.19 in a health lawbook. The 1999 Supreme Court case was pivotal for disability rights but it specifically concerned discrimination within a state Medicaid program. The plaintiffs were women with intellectual disabilities and mental health diagnoses whose physicians concluded that they could be cared for appropriately in a community setting but they remained institutionalized because the state Medicaid program failed to place them in a community care program. The Supreme Court held that the Americans with Disabilities Act (ADA) prohibits states from unnecessarily institutionalizing disabled people as a condition of receipt of publicly assisted medical care. The original opinion requires states to provide community-based treatment for persons with mental disabilities when the state’s treatment professionals determine that such placement is appropriate, the affected individuals do not oppose such treatment, and the state can reasonably accommodate the placement. Professor Becka Rich, whose scholarly interests include bioethics and disability law, proffers a rewritten opinion for the majority that differs from the original opinion in its explicit rejection of the defendants’ arguments that the costs of community care limit their obligations under the ADA. Rich’s feminist judgment indicates that the courts will hold states to task for taking full advantage of the flexibility and funding provided by Medicaid to support their compliance with the integration mandate of the ADA. In his commentary, Professor Doron Dorfman, a scholar of

19

527 U.S. 581 (1999).

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health law and disability law, highlights how the Olmstead plaintiffs’ claims to community-based care – and to health care generally – generate tension between financial constraints and the needs of people with disabilities and other chronic health conditions. He describes how Rich’s rewritten opinion could have supported a more equitable and nationally uniform health policy for community-based care. The next chapter shifts from Medicaid to private insurance regulation, while keeping the focus on discrimination against disabled people in health care financing. In Doe v. Mutual of Omaha Insurance,20 a Seventh Circuit case from 1999, the plaintiffs challenged lifetime coverage caps for AIDSrelated conditions, which blocked patients with HIV/AIDS from accessing antiretroviral therapies and other lifesaving medical care. Doe and Smith alleged that the caps violated the public accommodations clause of the ADA, which bars disability discrimination “in the full and equal enjoyment of the goods . . . of any place of public accommodation.”21 In the original opinion, Judge Posner, a prominent judge and scholar of law and economics sided with the insurance company, finding the caps permissible under the ADA, even though the defendant offered no proof that the AIDS caps were supported by sound actuarial data. Unlike Posner’s original opinion, Professor Valarie Blake’s feminist judgment focuses on the plain text of the disability rights statute, relevant legislative history, and valid guidance from the Department of Justice. Blake, whose scholarly interests include health care discrimination, also highlights the two decades of social and cultural context in which gay men and people with AIDS have been subjugated and stigmatized. Professor Christina Ho’s commentary discusses the impact the rewritten feminist opinion could have had on the development of protections for disabled people from discrimination by health insurers. Ho, a health reform scholar, contrasts the disability rights approach the plaintiffs advanced before the court with the statutory restrictions on health insurance underwriting based on health status-related factors eventually included in the Affordable Care Act passed more than a decade later. In the following chapter, on Smith v. Rasmussen,22 we return to Medicaid. In this Eighth Circuit case from 2001, a Medicaid recipient with disabilities brought action against the Iowa Department of Human Services under Section 1983 following denial of his request for Medicaid benefits for gender confirming surgery. The Eighth Circuit upheld Iowa’s Medicaid ban on 20 21 22

179 F.3d 557 (7th Cir. 1999). Id. at 559 (citing 42 U.S.C. § 12182(a)). 249 F.3d 755 (8th Cir. 2001).

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coverage for gender confirming surgery, finding it was reasonable and consistent with the federal Medicaid Act. Professor Craig Konnoth, whose scholarship focuses on health and civil rights, offers a feminist rewrite holding that the state regulation is inconsistent with federal Medicaid requirements because the state cannot justify as non-arbitrary the ban’s facial discrimination on the basis of sex. He finds that the ban on gender confirming surgery is discriminatory on its face and impermissibly relies on gender stereotypes because it permits coverage of particular procedures for individuals perceived as sufficiently cisgender – such as those who are intersex but have conformed to expectations associated with their sex assigned at birth - but not for others. Konnoth draws on empirical research showing that enforcing gender roles in this context seeks to prevent men from debasing themselves as women and to prevent women from claiming the privileges of men. Professor Heather McCabe’s commentary highlights how litigation related to transgender issues reveals the socially constructed nature of gender and provides useful insight into how gender and sex relate to each other and to theories of antidiscrimination. McCabe, a scholar with a background in both law and social work whose research focuses on LGBTQ+ health, situates the case and the rewrite within the historical and current environment in which federal, state, and local laws are in flux. After several chapters on health care financing, we shift focus to a case on the relationship between a patient and her health care providers that echoes Schloendorff. In the 2010 case of Burton v. State,23 the Florida District Court of Appeals overturned a trial judge’s order requiring a pregnant woman with two children and two jobs, who experienced premature rupture of membranes and onset of contractions at twenty-five weeks pregnant, to submit to any medical treatment that her obstetrician deemed necessary – including detention in the hospital for forced bed rest, administration of intravenous medications, and surgical delivery by cesarean section. Burton was prohibited from obtaining a transfer to another hospital where she might have gotten a second opinion because the trial court determined that moving her was not in the best interest of the child she carried. Professor Nadia Sawicki, whose scholarly interests include the law and ethics of reproductive health, offers a feminist concurring opinion. Sawicki agrees with the majority’s determination that the trial court failed to apply the correct legal standard but writes separately to highlight that, in addition, the trial court’s order was not supported by competent and substantial evidence, as required by the state’s obligation to

23

49 So.3d 263 (Fla. Dist. Ct. App. 2010).

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narrowly tailor its intervention. By surfacing the trial court’s failure to develop the evidentiary record, Sawicki’s feminist Burton concurrence emphasizes the importance of hearing Burton’s story and giving her the option of seeking the advice of additional medical professionals who may have disagreed with her obstetrician. In her commentary, Professor Greer Donley, a health law and reproductive justice scholar, highlights how the state’s efforts to dictate Burton’s health care “treatment” not only deprived her of dignity and bodily autonomy but also disregarded her right to make end-of-life decisions for her potential child. As journalistic accounts of Samantha Burton’s fight with her obstetrician and the state of Florida make clear, Burton was effectively incarcerated and battered for the protection of a potential child who was unlikely to survive regardless of the extreme measures the state sought to force upon her. Indeed, Burton ultimately had an emergency cesarean section whereupon doctors determined that her child had already died in utero. Our next chapter focuses on one of the most well-known recent cases in health law jurisprudence. In National Federation of Independent Business v. Sebelius,24 decided in 2012, twenty-six states as well as private individuals and an organization of independent businesses challenged the constitutionality of two key components of the Affordable Care Act: the individual mandate to purchase insurance if it is affordable to do so or face a tax penalty and the mandate that states must expand Medicaid to all individuals living at or below 133% of the federal poverty level or risk losing all of their Medicaid funding. The Court upheld the individual mandate but converted the Medicaid eligibility expansion from mandatory to optional for states. In her feminist rewrite of the majority opinion, Professor Elizabeth Weeks focuses on breaking down the public law-private law distinction to get beyond the traditional view of health insurance as a commercial product providing individual financial protection against risk and instead to view it as effecting a risk pool premised on cross-subsidization of the health care “haves” by the health care “have-nots.” With respect to the Medicaid expansion, Weeks’ feminist judgment rejects the original opinion’s dichotomy between “old” and “new” Medicaid as an artifice evidencing a fundamental discomfort with extending public assistance to able-bodied people who are judged capable of providing for themselves on the private market. In their commentary, Professors Mary Ann Chirba and Alice Noble (who, like Weeks, have written extensively on the Affordable Care Act) describe the badly fractured opinions in the original case and highlight how a majority of the justices failed to appreciate the lived

24

567 U.S. 519 (2012).

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experience of many Americans and their interactions with the complex and fragmented market for health care. Chirba and Noble assess the original opinion and Weeks’ feminist rewrite in terms of their concrete effects on women’s lives. In the final three chapters of this volume, the intersection of health law and reproductive rights comes to the fore in a trio of recent cases. Our focus in these chapters – as in earlier chapters that concern reproductive justice – is on the notion that reproductive health care is health care and should not be exceptionalized in ways that segregate women’s health and interests from the mainstream. The plaintiff in Means v. United States Conference of Catholic Bishops25 sought to hold the United States Conference of Catholic Bishops (USCCB) responsible for promulgating Ethical and Religious Directives for Catholic Health Care Services (ERD) that dictated the substandard care she received after her waters broke when she was eighteen weeks pregnant. Because a fetal heartbeat was still detectable, over the course of three visits in two days, hospital staff never told the plaintiff that her potential child probably would not survive, that her health was at risk, and that abortion was a sound medical choice for her to make. They were trying to send Means home upon her third visit, as they had on the first two, when she suffered a spontaneous miscarriage and related complications. Years later (after the statute of limitations had run out for any claim she might have brought against the hospital or its staff for medical malpractice), Means learned from a public health researcher that the substandard care she received was dictated by the ERD. Means filed suit against USCCB and other affiliated organizations, but the Sixth Circuit dismissed her case for lack of personal jurisdiction and failure to state a claim under Michigan negligence law, reasoning that the defendants’ promulgation and adoption of the ERD was passive conduct providing no basis for foreseeing harm to a patient like Means. Professor Leslie Griffin, a scholar of law and religion, offers a feminist judgment holding that the defendants’ affirmative activities and the foreseeability of harm to patients like the plaintiff support personal jurisdiction and a duty to exercise due care. Griffin’s rewritten majority opinion grants Means’ request to recognize that USCCB and the Catholic Health Ministries (CHM) owed her a duty not to promote an ethical theory that foreseeably harms patients by actively interfering with their access to needed medical treatment. Professor Maya Manian – whose scholarship investigates the relationship between constitutional law, family law, and

25

863 F.3d 643 (6th Cir. 2016).

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health care law – situates the case in the ongoing conflict between religious freedom and access to appropriate miscarriage management, treatment for ectopic pregnancies, abortion care, tubal ligation surgery, and access to contraception. Manian highlights that abortion care is interconnected with health care more broadly. Next, we turn to Does v. Gillespie,26 a case that arose out of a high-profile incident. As an expression of outrage following publication of hidden camera videos purporting to capture Planned Parenthood staff negotiating over the sale of fetal tissue, the Arkansas Department of Human Services terminated its Medicaid provider agreements with Planned Parenthood of Arkansas and Eastern Oklahoma. Three Medicaid beneficiaries sued the director of the department under Section 1983, claiming that the termination violated their federal right under the Medicaid Act to choose any “qualified” provider that offered covered services. The Eighth Circuit held that the free choice of provider provision in the federal Medicaid Act did not create rights enforceable by individual Medicaid beneficiaries under Section 1983. In their feminist judgment, Professors Melissa Alexander (whose scholarship focuses on the intersection of bioethics, health law, and public policy) and Jennifer Oliva (whose scholarly interests include health law and complex litigation) argue that the clear language of the Medicaid Act unambiguously demonstrates that Congress intended to confer a private right of enforcement for Medicaid beneficiaries under the free choice of provider provision. Their rewritten opinion for the majority better serves the purpose of the Medicaid Act by fostering access to health care and the courts. It also ensures that state flexibility does not swallow state accountability for specifically enumerated benefits. Professor Elizabeth Kukura’s commentary emphasizes the importance of focusing on the lived experience of Medicaid beneficiaries who rely on Planned Parenthood for basic health care needs. Kukura, whose scholarly interests are at the intersection of health law and gender, also highlights the influence of anti-abortion politics and ideology on health care access and the structural forms of discrimination that shape it. Our final chapter, on National Institute of Family & Life Advocates (NIFLA) v. Becerra,27 also focuses on reproductive care as health care. The stated purpose of the California Reproductive Freedom, Accountability, Comprehensive Care, and Transparency Act (the FACT Act) was to ensure that state residents were informed about the health care services available to them. It required licensed clinics to notify patients that California provided 26 27

867 F.3d 1034 (8th Cir. 2017). 138 S. Ct. 2361 (2018).

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free or low-cost services, including abortion, and give them a telephone number to call. It required unlicensed clinics to notify patients that they were not licensed to provide medical services. Two crisis pregnancy centers (pro-life organizations that offer pregnancy-related services to people who were unsure about getting an abortion) filed suit, alleging that the FACT Act violated their First Amendment right to free speech. The Supreme Court held that the FACT Act was not sufficiently tailored because the state could achieve its purpose of informing low-income women about available services without burdening the plaintiffs’ expression. Professor Sonia Suter’s rewritten majority opinion notes that the First Amendment bars disclosure mandates that promote a political view by requiring disclosure of nonfactual statements that reflect moral evaluations. Suter – a scholar of law, medicine, bioethics, and reproductive rights – reasons that the disclosure requirements at issue in NIFLA do not raise such concerns because the FACT Act fits squarely within the goals of informed consent. Professor Brietta Clark’s commentary contextualizes the case by discussing the asserted goals and service model of crisis pregnancy centers and the troubling practices of some centers, which delay patients’ access to abortions and provide false information about the risks of abortion. Clark, whose scholarship focuses on the impact of structural defects and biases that create inequity in health care delivery and financing systems, emphasizes how the original NIFLA decision exceptionalizes abortion in problematic ways and how the feminist judgment corrects that mistake.

conclusion The application of critical perspectives – including feminist legal theory and critical race theory – is a benchmark in the development of health law as a field of scholarly inquiry. As Robin West has written, “[f]eminist legal theorists both directly and indirectly contribute to the construction of various fields of law – civil rights law, constitutional law, criminal law, tort law, contract law, family law, international law and private law”28 and – as we argue in this introduction and book – health law. We hope that you enjoy these rewritten opinions and commentaries and that this volume will contribute to a flourishing critical discourse combined with pragmatic calls for laws and policies that move us toward gender justice and health justice more broadly.

28

Robin West, Introduction to Research Handbook on Feminist Jurisprudence, in Research Handbook on Feminist Jurisprudence 1 (Robin West & Cynthia G. Bowman, eds., 2019).

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2 Commentary on Schloendorff v. Society of New York Hospital danielle pelfrey duryea

background Professor Kelly K. Dineen, writing as Judge Dineen in the feminist judgment, begins bluntly: “Mary Schloendorff walked into the Society of New York Hospital for stomach upset;” some weeks later, “[s]he was wheeled out with permanent . . . injuries and infected open wounds, unhealed for two years.” She had been subjected to a hysterectomy without her consent – a surgery, in fact, performed over her specific, repeated refusal.1 Penned by future US Supreme Court Justice Benjamin Cardozo, the original decision in Mary Gamble Schloendorff’s case against New York Hospital2 is the best known of a set of early twentieth-century state court cases establishing the legal foundations of what would evolve into the modern notion of “informed consent” to medical treatment.3 The other cases include: Rolater v. Strain, 127 P. 96 (Okla. 1913); Rishworth v. Moss, 159 S.W. 122 (Tex. Civ. App. 1913); Pratt v. Davis, 79 N.E. 562 (Ill. 1906); and Mohr v. Williams, 104 N.W. 12 (Minn. 1905). Indeed, Cardozo’s opinion has become a near-obligatory reference point for medicine, bioethics, and health law commentators alike,4 who regularly quote its clear and forceful statement of patient autonomy and physician liability: 1

2

3

4

See Paul A. Lombardo, Phantom Tumors and Hysterical Women: Revising Our View of the Schloendorff Case, 33 J. L. Med. & Ethics 791, n. 76 (2005) (suggesting that a few commentators identify the plaintiff’s unwanted surgery as a hysterectomy). Schloendorff v. Soc’y of N.Y. Hosp., 105 N.E. 92 (N.Y. 1914), abrogated by Bing v. Thunig, 143 N.E.2d 3 (N.Y. 1957) (rejecting doctrine of hospital immunity for injuries negligently inflicted on patients by employees acting within the scope of their employment). See, e.g., Lombardo, supra note 1, at 798–799; Anthony Szczygiel, Beyond Informed Consent, 21 Ohio N. U. L. Rev. 172, nn. 60–75 and accompanying text (1994). See, e.g., Janet Malek, Informed Consent, in Encyclopedia of Science, Technology & Ethics 1016 (Carl Mitcham, ed., 2005); Jessica W. Berg, Paul S. Appelbaum. et al., Informed Consent: Legal Theory & Clinical Practice 43–44 (2001).

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Danielle Pelfrey Duryea In the case at hand, the wrong complained of is not merely negligence. It is trespass. Every human being of adult years and sound mind has a right to determine what shall be done with his [sic] own body; and a surgeon who performs an operation without his [sic] patient’s consent commits an assault, for which he [sic] is liable in damages.5

Yet few such citations and tributes acknowledge that Mary Schloendorff lost her case.6

original opinion Cardozo’s opinion opened not with the injuries Schloendorff had suffered, but with another topic altogether. “In the year 1771, by royal charter of George III,” he began sonorously: the Society of the New York Hospital was organized for the care and healing of the sick. During the century and more which has since passed, it has devoted itself to that high task. . . . The purpose is not profit, but charity, and the incidental revenue [collected from patients able to pay for care] does not change the defendant’s standing as a charitable institution.7

Emphasizing his driving concern that assessing liability to hospitals would discourage them from the “beneficent work” of service to all, Cardozo would return to this charitable nature and purpose at the end of the opinion.8 After discussing New York Hospital’s charitable purpose, Cardozo briefly recited the facts of Schloendorff’s hospitalization and its aftermath. She was admitted as a paying patient. A house physician discovered that she had a lump, and a visiting surgeon recommended surgery to remove the lump. Schloendorff consented to a diagnostic examination under ether but told the house physician that she refused surgery. Nevertheless, the lump was surgically removed while she was unconscious, anesthetized by another house

5

6

7

8

Schloendorff, 105 N.E. at 93 (internal citations omitted) (quoted in whole or in part in, e.g., Yael Schenker & Alan Meisel, Informed Consent in Clinical Care: Practical Considerations in the Effort to Achieve Ethical Goals, 305 J. Am. Med. Assoc. 1130, 1130 (2011)). But see, e.g., Stephen Bolsin & Kym Saunders, Informed Consent in Medical Practice, Trends in Urology & Men’s Health 34, 34 (2012). Schloendorff, 105 N.E. at 92–93. Though a seasoned litigator, Cardozo was a brand new jurist at the time of oral arguments in Schloendorff. See Andrew L. Kaufman & Benjamin N. Cardozo, in Yale Biographical Dictionary of Am. L. 95 (Roger K. Newman, ed., 2009). Schloendorff, 105 N.E. at 95. But see Andrew L. Kaufman, Cardozo 252 (1998) (observing that Cardozo came down repeatedly in support of rules that exempted employers from liability for employees’ torts).

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physician. Schloendorff subsequently developed gangrene in one arm, and some of her fingers had to be amputated. Cardozo then pondered the charitable immunity doctrine, under which a hospital could be excused from liability for the negligent acts of physicians treating patients at that hospital. One argument justifying charitable immunity was that patients who availed themselves of the benefits of a hospital thereby impliedly waived their right to complain if those benefits were negligently delivered. The second rationale for the doctrine was that a hospital could not be held liable for negligent medical treatment because the hospital did not control the treating physician’s practice. That is the doctrine of respondeat superior, which holds employers strictly liable for torts committed by employees in the scope of their duties on behalf of the employer; it could not apply because a physician was an independent professional “following a separate calling,”9 not a “servant” or agent of the hospital acting on behalf of the hospital as “master” or principal. But were either of the doctrine’s underlying rationales applicable to the question of whether a hospital should be immune from liability for a physician or nurse’s intentional tort? Here, Cardozo delivered his famously unequivocal vindication of a patient’s right to refuse a medical intervention and the liability of a physician who proceeded against the patient’s will. If “every human being of adult years and sound mind has a right to determine what shall be done with his [sic] own body,” he determined, a patient who refuses a procedure cannot be said to have waived the right to complain of the trespass of being subjected to the procedure anyway. Nevertheless, he concluded, extending charitable immunity to hospitals for intentional torts of physicians was justified because “the relation between a hospital and its physicians is not that of master and servant. The hospital does not undertake to act through [its physicians], but merely to procure them to act upon their own responsibility.”10 In this case, he said, the same principle was applicable to the surgeon and to the house physician who had anesthetized Schloendorff before the procedure, though Cardozo further stated that this second doctor had “t[aken] no part in the operation, and had no knowledge of it.”11 Yet, Cardozo suggested, it might have been improper for New York Hospital to allow the surgeon use of the facilities if the hospital been on

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Schloendorff, 105 N.E. at 93. Id. at 94. Id. at 95. According to the testimony of the operating surgeon and attending nurse, however, the “physician etherizer” in fact had accompanied Schloendorff into the operating room and was present throughout the surgery.

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notice that he intended to operate on Schloendorff against her will.12 First, Cardozo considered whether, in providing patient care, a nurse is a hospital agent-employee whose knowledge can be attributed to the hospital. Even though nurses were selected, hired, and paid by the hospital, he concluded that nurses treating patients in a hospital stand in the same non-servant relationship to that hospital as the physicians treating the same patients. “Nurses are employed to carry out the orders of the physicians, to whose authority they are subject,” he claimed, not to act on the hospital’s behalf.13 He then queried whether – even assuming that a treating nurse could be said to act on her hospital’s behalf – the actual interactions between Schloendorff and the New York Hospital nurses could possibly have served notice that the physicians contemplated an intentional tort against one of their patients. In light of the surgeon’s high reputation and the nurses’ training to “rely unquestioningly upon the judgment of [their] superiors,” he concluded, “no woman would reasonably infer from the plaintiff’s words that it was the purpose of the surgeons to operate whether the plaintiff forbade it or not.”14 The only circumstance in which Cardozo imagined a hospital could be liable for the intentional torts of physicians operating within its walls was one in which “a patient’s struggles or outcries in the effort to avoid an operation” were actually heard by the hospital’s administrative staff.15 Under such circumstances, a hospital should “resist, or at least protest,” to avoid liability.16

feminist judgment Writing as Judge Dineen of the New York Court of Appeals, Dineen styles her feminist judgment as a dissent from the original opinion, enabling her to confront Cardozo directly on three key points: (1) his faulty application of the relevant standard of review; (2) his mischaracterization of charitable immunity doctrine as settled law; and (3) his misrepresentation of hospital nurses as mere instrumental extensions of physicians, incapable of independent action, professional judgment, or ethical responsibility. With these errors corrected, she concludes that not only the hospital, but also the nurses who treated Mary Schloendorff, could have been held jointly liable for her injuries with the physicians who anesthetized and operated on her. Dineen would count 12 13 14 15 16

Id. at 94. Id. Id. at 95. Id. at 95. Id.

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expanding liability for the profession populated almost entirely by women a feminist victory. In the original case, at the conclusion of the trial below, the presiding judge had ruled that the evidence allowed for only one reasonable result and so had taken the decision from the jury’s hands in a directed verdict for the hospital.17 Dineen’s dissent immediately takes issue with the cavalier manner in which Cardozo’s opinion treated the standard of review for a court considering the appeal of a directed verdict. While the court of appeals was required to assume “all disputed facts . . . as established in [the appellant’s] favor,”18 she writes, Cardozo instead ignored Schloendorff’s own accounts and selectively credited those of the physicians, despite their general “inability to recall anything, except their certainty that they had not wronged the appellant.” Dineen holds a similarly dim view of the original opinion’s use of charitable immunity precedent. Cardozo described it as a “settled rule that [a] hospital is not liable for the negligence of its physicians and nurses in the treatment of patients;”19 Dineen explains why many of the cases Cardozo cited do not support his characterization, calling it “a tenuous concept receiving both fair criticism and sometimes only reluctant adherence.” This difference is important because Cardozo relied on the second of two rationales for the supposedly settled rule – the non-servant status of physicians and nurses – when he turned to the distinct question of whether a hospital can be liable for a physician or nurse’s intentional tort. If the entire doctrine of charitable immunity for negligent acts is not a firm foundation, but rather “based on policy justifications that vary by jurisdiction,” as Dineen describes it, then the rule defining the legal relationship of the physicians and nurses to the hospital seems considerably more open to a policy-based adaptation to evolving social conditions. Of course, this is the sort of adaptation for which Cardozo himself would soon become famous, as discussed below.20 Dineen’s dissent then turns to the myriad reasons why such an adaptation is justified by the structure and function of the early twentieth-century hospital and its relationship to the physicians and nurses practicing within its walls. She explains how crucial then-recent medical advances, including the germ theory of disease,21 have made lifesaving, hospital-based practice out of what had been “brutal and hasty butcheries performed under looming death.”

17 18 19 20 21

Schloendorff v. Soc’y of N.Y. Hosp., 133 N.Y.S. 1143 (N.Y. App. Div. 1912). McDonald v. Metro St. Ry. Co., 60 N.E. 282, 283 (N.Y. 1911). Schloendorff v. Soc’y of N.Y. Hosp., 105 N.E. at 93. See infra note 36 and accompanying text. See Germ theory, Encyclopedia Britannica [https://perma.cc/LV7X-9TDS].

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Surveying the then-recent history of the nursing profession, Dineen claims a key role for trained, registered, professional nurses in the administration of that modern, scientific practice and lauds New York’s leading role in the standardized training and licensure of nurses. She notes the considerable case law that treats nurses as agents of the hospitals that employ them, and quotes from the record to demonstrate that the New York Hospital administration did in fact think of nurses and house physicians as employees. Finally, citing contemporaneous textbooks and professional journals, Dineen delineates a nurse’s independent duties of candor, judgment, and care to her patient before concluding that the hospital’s nurses and house physician both owed Schloendorff an obligation to intervene to prevent an intentional wrong to her, and that the hospital was responsible for their failure to do so.

implications Before further comment on the original opinion and the feminist judgment, it is worth pausing a moment to distinguish between the principle of simple consent to medical treatment that Cardozo described in Schloendorff and two related but distinct ideas: informed consent to medical treatment and informed consent to participation in medical research. Informed consent to treatment evolved in the second half of the twentieth century out of earlier simple voluntary consent cases, beginning with 1950s decisions finding that a physician has an affirmative duty to disclose to the patient certain risk information before treatment for the patient’s consent to be valid.22 That is, informed consent to treatment is a tort doctrine setting a standard of medical malpractice liability.23 By contrast, informed consent to research participation is an ethical principle as well as a compliance obligation codified in statute and regulation.24 Also emerging in the mid-twentieth century, the right of a potential biomedical research subject to understand the nature and risks of participating and to give voluntary consent responded in significant part to Nazi medical “research” atrocities.25 The evolution of both the principles and 22

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See, e.g., Berg et al., supra note 4, at 42–46; Alan Meisel, The Expansion of Liability for Medical Accidents: From Negligence to Strict Liability by Way of Informed Consent, 56 Neb. L. Rev. 51, 82 (2001). See, e.g., Berg et al., supra note 4; Meisel, supra note 22. See, e.g., Berg et al., supra note 4, at 249–253. See generally Federal Policy for the Protection of Human Subjects (‘Common Rule’), US Dep’t of Health & Hum. Servs. (Mar. 18, 2016), [https://perma.cc/W3JR-9C3G] (regulations shared by twenty federal agencies). See, e.g., Berg et al., supra note 4, at 249–253 (recounting the “independent evolution” of principles and practices of informed consent to participate in research).

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law of informed consent to research was profoundly shaped by subsequent revelations of unethical medical research both in the United States, such as the notorious forty-year Tuskegee Syphilis Study, which withheld a highly effective antibiotic treatment from poor Black research subjects, and elsewhere.26 The Voice of a Woman’s Body in Pain27 Cardozo is noted, among other reasons, for articulating the idea that judges do not merely discover or interpret rules of law, but themselves create law through judicial decision-making.28 As biographer Andrew L. Kaufman observes, Cardozo often did adapt law to evolving social conditions: but also often declined to make such adaptations, as in another famous opinion, Palsgraf v. Long Island Railroad (1928) . . . Given his reputation as a progressive, the surprising thing about the totality of Cardozo’s opinions is the balance between the innovative and noninnovative ones. And good lawyer that he was, his decisions often turned on his vision of the underlying factual situation.29

So it was in Schloendorff: The opinion reflects a “vision of the facts” suffused with sexist stereotyping as well as a clearly gendered inability to hear Mary Schloendorff’s voice.30 In the original opinion’s one-paragraph factual summary, his framing repeatedly undermined Schloendorff’s reliability as a witness to and reporter on her own experience. Not until the third-to-last sentence of the paragraph did he even grudgingly acknowledge that – because of the case’s procedural posture – “her narrative, even if improbable, must be taken as true.”31 But, by this point, he had already qualified three crucial factual points by prefacing 26

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See generally, e.g., Susan M. Reverby, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (2009). Cf. Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (1987) (arguing that the “radical subjectivity of pain” makes physical suffering difficult, if not impossible, to represent in language). See, e.g., Benjamin N. Cardozo, The Nature of the Judicial Process 10, 103 (1921) (“I take judge-made law as one of the existing realities of life;” “[w]e do not pick our rules of law full-blossomed from the trees.”). Kaufman, supra note 8, at 96. Cf. Kaufman, supra note 8, at 232–233, 437 (comparing repeated “gender deafness” in Cardozo’s judicial writings with his view of formal legal equality – for example, women’s suffrage or availability of family law torts theories to both men and women – as “common justice”). Schloendorff v. Soc’y of N.Y. Hosp., 105 N.E. 92, 93 (N.Y. 1914).

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each with limiting language that served to diminish each one to a mere assertion or opinion. First, he wrote, “[t]he plaintiff’s testimony is that” an examination under anesthesia was required for proper diagnosis, “so the physicians informed her.”32 “As she says,” he continued, she specifically forbade one of the physicians to operate on her while she was anesthetized for diagnosis.33 Finally, he wrote, “[h]er testimony is that” she was then operated on, under anesthesia, without notice or consent.34 Cardozo then further subverted Schloendorff’s third, crucial allegation by pointing out that the two physicians and “many of the attendant nurses” contradicted her description of events.35 The cumulative effect is almost to parody Schloendorff’s voice. Indeed, though he calls it “her narrative,” there are hardly any of her own words or her own subjectivity in it. In contrast, by opening with a frank description of Schloendorff’s injuries rather than obeisance to New York Hospital as a historic charity of grand reputation, Dineen signals that her judgment will side with the suffering individual, not the abstract institution with which Cardozo’s aligns itself. Dineen’s dissent repeatedly quotes Schloendorff’s own words, including a harrowing description of the last moments before the unwanted surgery: She was “frightened and tried to get up . . . and get away,” she testified, but the anesthetizing physician “took his hand and pushed against my forehead and pushed me back, and put the mouthpiece in my mouth.” “Who else, besides the very people entrusted to care for her in her surgeon’s absence, was [Schloendorff] expected to look to for help?” demands Dineen; “[h]ow many more desperate pleas were required[?]” As Dineen tartly observes, “The majority’s condescending characterization of the appellant’s less desperate pleas as ‘nervous and excited’ leaves little doubt that more vocal struggles and outcries would be proportionately discounted.” Despite its ringing statement on patient autonomy, the original opinion aligns the court’s voice with those of the male physicians who belittled Schloendorff’s clearly expressed wishes as overreactive feminine agitation – hysterical in a figurative sense – and believed they knew what was good for her better than she did. Indeed, the physicians (and the court) may well have thought her more than figuratively hysterical. In nineteenth-century medicine, “few facts were more uncontestably established than that

32 33 34 35

Id. Id. Id. Id.

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[a woman] was ‘the product and prisoner of her reproductive system.’ Woman’s place in society – her capacities, her roles, her behavior – was ineluctably linked to and controlled by the existence and functions of her uterus and ovaries.”36 Moreover, by conflating Schloendorff’s actual physical injury as a result of an intentional tort with her purported emotional overreactivity, the original decision contributed to the privileging of physical harms over emotional and relational injuries in tort law. As a number of commentators have observed, this privileging “has worked to the systematic disadvantage of women and minority [sic] plaintiffs.”37

The Right to a Professional Voice Schloendorff’s ordeal unfolded in the midst of a complex set of negotiations and consolidations out of which emerged the modern professions – not only medicine and nursing, but also law, engineering, and other high status, knowledge-based service occupations. Simply defined, a profession is an “occupation based on advanced, or complex, or esoteric, or arcane knowledge.”38 Historians and sociologists of “the professions” can generally further agree that “[i]n addition to being repositories of authoritative knowledge, the professions have some common features: restricted entry, high-level qualifications and stringent tests of competence, together with distinctive types of formal organisation.”39 Across Europe and the United States, the rise of “occupational professionalism” had accompanied the social and economic transition to industrial capitalism and growth of the middle classes; it enabled group social mobility and helped to create new forms of social stratification.40 The emergence of “the professions” had distinctive gendered, classed, racialized, and regional dimensions that scholars continue to uncover.41 The coevolution of modern 36

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Andrew Scull, Hysteria: The Disturbing History 72 (2009) (quoting Carroll SmithRosenberg & Robert Rosenberg, The Female Animal, 60 J. Am. Hist. 334 (1973)); see also id. at 84–103 (providing an overview of the hysteria diagnosis’ deeply gendered history). Martha Chamallas & Jennifer B. Wriggins, The Measure of Injury: Race, Gender, and Tort Law 3 (2010). Keith M. Macdonald, The Sociology of the Professions 1 (1995). Stephen Ackroyd, Sociological and Organisational Theories of Professions and Professionalism, in The Routledge Companion to the Professions & Professionalism 15 (2016). “[I]n fact, since modern society is knowledge-based, professions, as knowledge-based occupations, are an integral part of the modern social formation.” Macdonald, supra note 38, at 36, 34–35; see, e.g., Anne Witz, Professions and Patriarchy 76 (2004). See generally, e.g., Jeff Hearn, Ingrid Biese, Marta Choroszewicz & Liisa Husu, Gender, Diversity and Intersectionality in Professions and Potential Professions: Analytical, Historical and Contemporary Perspectives, in The Routledge Companion, supra note 39, at 57–70.

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medicine and modern nursing as distinctively gendered professional projects is one of the better-explored.42 It can be difficult to recall that, only a little over a century ago, what we now consider orthodox scientific medicine was just consolidating its authority.43 A variety of competing treatment modalities, such as hypnosis, botanic medicine, and homeopathy, had flourished across the nineteenth century.44 The American Medical Association was established late by comparison with its European counterparts and would not grow to mass membership until the 1920s, following a major reorganization in the first decade of the twentieth century.45 Nevertheless, as in Europe, professionalization and masculinization went hand in hand in American medicine. Over the course of the nineteenth century, less and less health care was provided privately in the home or neighborhood, where most providers had been women. Growing wealth enabled the expanding middle class to purchase the services of formally trained medical practitioners offered on the public market.46 Generally unable to access formal education and – for middle- and upperclass white women – often confined to domestic spaces, most women were implicitly (if not formally) excluded from the rapidly formalizing profession of medicine.47 Led by British nursing trailblazer Florence Nightingale (1820–1910), midnineteenth century efforts to consolidate a professional identity for nursing deployed gender as a chief defining element.48 Though the strategy did clear a professional space for middle-class, white women to inhabit, the broader racialized and classed gender context meant that the separate occupation

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See generally, e.g., Patricia D’Antonio, American Nursing: A History of Knowledge, Authority & the Meaning of Work 1–27 (2010); Linda C. Andrist, The History of the Relationship between Feminism and Nursing, in A History of Nursing Ideas 5 (Linda C. Andrist, Patrice K. Nicholas et al., eds., 2006). See, e.g., Macdonald, supra note 38, at 82–85. Macdonald attributes the somewhat later consolidation of the medical profession in the United States to geographical size and variation, decentralized governmental structures, and ideological populism and individualism. See id. at 83. See id. at 82. See id. at 82–83. The AMA was founded in 1847 as an outgrowth of the New York Medical Association. AMA History, Am. Med. Ass’n [https://perma.cc/VCW8-G5PQ]. See, e.g., Witz, supra note 40, at 76–77 (citing Ivan Waddington, The Medical Profession in the Industrial Revolution (1984)). See, e.g., Witz, supra note 40, at 77, 187–188. There were some nineteenth-century American women who trained as physicians and practiced medicine. See, e.g., Ellen S. More, Elizabeth Fee et al., eds., Women Physicians and the Cultures of Medicine (2009). Indeed, the great majority of US nursing schools, founded as single-sex educational institutions for women, did not admit men until after the Korean War. See Andrist, supra note 42, at 10.

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would be inherently unequal in status.49 In fact, the approach to nursing professionalization closely associated with Nightingale embraced that broader power imbalance such that acceptably white, middle-class “feminine” traits such as subservience, vocation, and morality became integral to the professional identity of nursing – what one later historian has called the “Nightingale compromise.”50 What was considered acceptably feminine was produced by a racialized and classed gender ideology of metaphorical “separate spheres” for (white, middle-class) men (broadly, the public world, the market, competition, sexuality) and for (white, middle-class) women (broadly, the home, virtue, submissiveness, asexuality).51 Cardozo’s original opinion highlights the profession’s supposed feminine subservience – but without Nightingale’s high expectations of discipline and morality. His deference, as a fellow professional, to professional judgment and independence clearly extends only to physicians – the “men of tested merit” “pursuing an independent calling,” and therefore not servants of the hospital.52 Nurses treating patients are merely servants, in their turn, of physician judgment and therefore not of the hospital: “[a]bout such matters a nurse is not qualified to judge. She is drilled to habits of strict obedience.”53 A second, competing discursive strain within the nursing profession – the one that Dineen’s dissent adopts – emphasized technical competence and skill as profession-defining factors.54 Both are examples of what sociologists of the professions call “dual closure”: a group strategy of responding to exclusion from one profession by carving out a separate adjacent professional territory that not only distinguishes itself from the excluding profession, but also institutes its own exclusionary practices.55 This shift corresponded with evolving gender ideology as “the Woman Movement” gained ground in the closing decades of the nineteenth century, and the popular culture figure of “the New

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Celia Davies, A Constant Casualty: Nurse Education in Britain and the USA to 1939, in Rewriting Nursing History (Celia Davies, ed., 1980); see, e.g., Darlene Clark Hine, Black Women in White: Racial Conflict and Cooperation in the Nursing Profession, 1890–1950 (1989). See Witz, supra note 40, at 137 (citing Wai-Fong Chua & Stuart Clegg, Professional Closure, 19 Theory & Society 135 (1990)). See, e.g., Nancy F. Cott, The Grounding of Modern Feminism (1987). Schloendorff v. Soc’y of N.Y. Hosp., 105 N.E. 92, 95 (N.Y. 1914). Id. In a sense, Cardozo applied a paternalistic “reasonable woman” standard here – “no woman . . . would reasonably infer” that the surgeons had intended to operate on Schloendorff against her will – rather than the putatively gender-neutral “reasonable man” negligence standard. See, e.g., Witz, supra note 40, at 137. See Macdonald, supra note 38, at 132–133; Witz, supra note 40, at 37–66.

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Woman” – associated especially with the cause of women’s suffrage – cleared ideological space for (white, middle-class) educated women of expertise in the public sphere.56 By demanding equal legal respect for nurses’ professional autonomy – and therefore equal professional liability (in addition to liability for the hospital) – the dissent follows a liberal feminist approach, which generally takes individualism, self-determination, and privacy as core values and accordingly prioritizes formal equality under the law.57 Such respect would have changed the result of the case and awarded Schloendorff relief that she richly deserved. But, had Cardozo given voice to the nurses of New York Hospital in this way, would they and their sisters in the profession have gained respect, power, or agency in the world outside the walls of the New York Court of Appeals along with that legal recognition and economic responsibility? Voice is not synonymous with empowerment.58 New York women could not vote either in 1908 or 1914.59 Women would not sit on juries in New York until 1937.60 Married women61 had only gained the statutory right to contract as if unmarried about twenty years earlier.62 State courts regularly construed New York’s Married Women’s Property Acts narrowly to sustain husbands’ access to and control over their wives’ economic resources.63 A paucity of female lawyers (or male lawyers willing to represent feminist causes) meant that New York women could be hard-pressed to enjoy in practice even those rights guaranteed to them in law.64 Recognizing nurses’ agency in this opinion would

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See generally Cott, supra note 51. See, e.g., Robin West, Introduction, in Research Handbook on Feminist Jurisprudence 1, 5–11 (Robin West & Cynthia Grant Bowman, eds., 2019). See generally, e.g., Briony Lipton & Elizabeth Mackinlay, Concepts of Voice & Feminism, in We Only Talk Feminist Here: Feminist Academics, Voice and Agency in the Neoliberal University 61 (2017). See Centuries of Citizenship: A Constitutional Timeline, 1907–1930, Nat’l Const. Ctr., [https://perma.cc/7FR8-QMND]. Even in 1914, only eleven states – all west of the Mississippi River – had granted women the right to vote. Id. Linda K. Kerber, A Constitutional Right to be Treated Like Ladies, in U.S. History as Women’s History: New Feminist Essays 30 (Linda K. Kerber, Alice Kessler-Harris & Kathryn Kish Sklar, eds., 1995). A substantial minority of the nurses at New York Hospital in 1908 were likely married. Cf. Shirley H. Fondiller, Go and Do Thou Likewise: A History of Cornell UniversityNew York Hospital School of Nursing 1877–1979 23 (2007) (noting that about 45% of women graduates between 1878 and 1920 were married). See Norma Basch, In the Eyes of the Law: Women, Marriage, and Property in Nineteenth-Century New York 224 (1982). See id. at 207. Cf. id. at 208.

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hardly have guaranteed that they could command equal respect as autonomous professionals in the hospital or as full participants in other spheres, private as well as public.

conclusion “‘Bad,’ was my commentary.” From any feminist perspective, Cardozo’s original opinion surely deserves to be labeled “bad.” If Dineen’s feminist opinion had spoken for the majority in 1914, would history look different? Had New York courts definitively abandoned charitable immunity for hospitals here in 1914 rather than in 1957’s Bing v. Thunig,66 surely modern patterns of medical malpractice liability could have been set much earlier. Perhaps the doctrine of informed consent would have emerged sooner. But what of judges and doctors’ capacity for hearing the voice of an educated, middle-class, white woman who was violated and injured at the hands of physicians who substituted their judgment for theirs? What of the legal system and medical profession’s willingness to respect a patient’s autonomy to decide what medical procedures they will undergo when that patient is anything but a privileged, cisgender, white man? Some thirty years ago, literary critic Karen Chase cautioned modern feminists not to assume that certain “problems are behind us or that they are a difficulty for the women we study and not the women we are.”67 That caution seems just as relevant as we reconsider Mary Schloendorff’s case, now more than a century old. As but one example, consider the recent revelation that US medical trainees still regularly practiced pelvic examinations on unconscious women without prior consent of any kind.68 Indeed, when the practice came to wide public attention in 2018, the practice was legal in forty-four states when done as part of medical training. The question of whether all people are entitled to bodily autonomy in health care – and the right to recover for violations of it – is hardly a relic of the past. 65

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Also the title of a noted essay on feminism and madness, this quotation comes from a scene in Emily Brontë’s Wuthering Heights in which the family nurse criticizes the reasons that the novel’s antiheroine gives for becoming engaged to the scion of a neighboring family. 143 N.E.2d 3 (N.Y. 1957). Karen Chase, “‘Bad,’ was my commentary” – Propriety, Madness, Independence in Feminist Literary History, in Victorian Connections 11 (Jerome J. McGann, ed., 1989). See Phoebe Friesen, Educational Pelvic Exams on Anesthetized Women: Why Consent Matters, 32 Bioethics 298 (2018).

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SCHLOENDORFF V. SOCIETY OF NEW YORK HOSPITAL, 211 N.Y. 125 (1914)

judge kelly k. dineen, dissenting in the opinion Mary Schloendorff (appellant) walked into the Society of New York Hospital (appellee) for stomach upset, agreeing to pay a weekly rate in exchange for care and treatment. She was wheeled out with permanent crippling injuries and infected open wounds, unhealed for two years. These complications followed the surgical removal of her uterus performed outside of the agreement for care, without her consent, and over her repeated objections to both nurses and physicians in the appellee hospital. The majority deviates from its obligations in reviewing a directed verdict, which entitles the appellant to “the most favorable inferences deducible from the evidence [with] all disputed facts to be treated as established in her favor.” McDonald v. Metro. S. R. Co., 60 N.E. 282, 283 (N.Y. 1901); Keller v. Halsey, 95 N.E. 634, 635 (N.Y. 1911) (stating that when evidence is sufficient, the question of credibility of the witnesses is for the jury). Throughout the opinion, testimony is ignored and misstated to provide appellee shelter from liability. Mrs. Schloendorff’s accounts are minimized while the physicians’ are emphasized, despite their testimony consisting mostly of the inability to recall anything, except their certainty that they did not wrong the appellant. Fundamentally, the majority seriously misunderstands the nature of the modern hospital; in particular, their portrayal of nursing is outdated by half a century. Contrary to the majority’s characterization of nursing as disempowered and devoid of professional judgment, today’s nurses are trained, educated professionals with independent duties and obligations to their patients. As Florence Nightingale wrote, “what cruel mistakes are made by benevolent men in matters about which they can know nothing and think they know a great deal.” (Notes on Nursing: What it is and What it is Not [1860]). An accurate accounting of the roles and responsibilities of nurses, as well as an appropriate deference to the appellant in reviewing the evidence leads to the conclusion that a directed verdict was improper. As such, I respectfully dissent.

i Both the appellant and her son testified about the agreement on admission to the hospital for care and treatment in exchange for payment of $7 per week.

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R. at 18, 48. After weeks of treatment for stomach upset and on the eve of her planned return home, Mrs. Schloendorff was whisked away to be prepared for surgery she had not agreed to, a fact supported by the testimony of several witnesses and a letter sent to a friend. Id. at 22, 49; Pl.’s Ex. #4, 205. Before the surgery, Mrs. Schloendorff told no fewer than two nurses and two doctors of her refusal, pleading that her consent was for an ether examination, which the visiting surgeon required because he found her “too nervous, too rigid” to examine normally. R. at 20–21, 23–24. When Mrs. Schloendorff reached the house physician administering the ether (the etherizer), she reported she was “frightened and tried to get up . . . and get away,” but the etherizer “took his hand and pushed against my forehead and pushed me back, and put the mouthpiece in my mouth.” Id. at 24. The next thing she remembered was waking to discover she had, in fact, been operated on without her consent by a surgeon who admitted he did not “recall speaking to her . . . before [he] put the knife in her.” Id. at 30, 118. That battery was made possible by nurses and physicians, complicit by silence and physical assistance, who turned a blind eye to their obligations to the appellant’s well-being and her right to agree to or refuse treatments, including her right to control her own person. Union P.R. Co. v. Botsford, 141 U.S. 250, 251 (1891) (“[no] right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of others”); Cadwell v. Farrell, 28 Ill. 438 (Ill. 1862) (describing a dental extraction without consent as an aggravated trespass to the person); Pratt v. Davis, 79 N.E. 562 (Ill. 1906) (upholding judgment in trespass against a surgeon who removed a woman’s ovaries and uterus to treat epilepsy without consent); Rolater v. Strain, 137 P. 96 (Okla. 1913) (affirming judgment for the plaintiff who had bone removed during a wound surgery in contravention of her consent to surgery conditioned on no bone removal); Mohr v. Williams, 104 N.W. 12 (Minn. 1905) (woman who underwent left ear examination and surgery after consenting only to right ear surgery suffered a battery). Mrs. Schloendorff suffered myriad complications from that surgery, including the permanent loss of her arm and hand, constant pain in her hand and leg, and unhealed wounds that required treatments in four different hospitals over seven months after her unceremonious discharge from the appellee hospital. R. at 39–42. In the face of these and other indignities, the majority ignores the possibility that a contract was breached, hides behind both charitable immunity, and takes extensive liberties with the facts to uphold the directed verdict for the appellee. Despite the majority’s assertions, charitable hospitals that also provide care in exchange for money from those with available funds – often called

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“pay sides” – are not immune from contract actions. Ward v. St. Vincent’s Hosp., 57 N.Y.S. 784 (N.Y. App. Div. 1899) (hereinafter Ward 2). The majority here repeats the mistakes of Ward v. St. Vincent’s Hospital, 50 N.Y.S. 466 (N.Y. Sup. Ct. 1898) (Ward 1), in ignoring the evidence of a contract between a patient and hospital and construing it purely as a matter of negligence. Ward 2, 57 N.Y.S. at 784. In that case, the plaintiff agreed to pay a weekly fee for care in the defendant’s charitable hospital, including competent nursing care; instead, she was severely burned after a pupil nurse placed a scalding hotwater bottle on her legs after surgery. Id. at 785. In reversing Ward 1, the Ward 2 court explained that the plaintiff had properly alleged an express contract and that there was sufficient evidence at trial for the issue to be presented to a jury. Id. 784–786. Here, the appellant similarly alleges a breach of contract and there was sufficient evidence at trial to place the matter in the hands of a jury. As such, I believe the majority is in error. I devote the rest of my dissent to the serious issues that arise from the majority’s descriptions of the contours and limits of charitable immunity and the misconstruction of the facts.

ii Charitable immunity should not shield the appellee from liability for the intentional torts committed against Mrs. Schloendorff. In New York, charitable organizations are immune from negligent actions of their employees and servants toward the beneficiaries of the charity, here the patients receiving care. Id. Under this theory, those who benefit from the charitable acts of the organization implicitly waive their right to recover for the negligent acts of the organization’s servants in carrying out those charitable acts. Hordern v. Salvation Army, 92 N.E. 626, 627 (N.Y. 1910). Nonetheless, charitable immunity for servants’ negligence is a tenuous concept, receiving both fair criticism and sometimes only reluctant adherence. Collins v. N.Y. PostGraduate Med. Sch. & Hosp., 59 N.Y.S. 63, 66 (N.Y. App. Div. 1901) (noting that opinions on charitable immunity differ though the law be settled); Ward 1, 50 N.Y.S. at 468 (noting it may be wiser to hold charitable institutions to competent care than immunize them for negligence); Powers v. Mass. Homoeopathic Hosp., 109 F. 294, 300–301 (1st Cir. 1901) (rejecting the trust fund theory of immunity); Glavin v. R.I. Hosp., 12 R.I. 411, 428 (R.I. 1879) (rejecting charitable immunity altogether). This immunity is based on policy justifications that vary by jurisdiction. Hordern, 92 N.E. at 627 (avoiding illegal diversion and waste of trust); Respondeat Superior in the Case of Charitable Corporations, 9 Harv. L. Rev. 541 (1896) (describing the decisions as irreconcilable).

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A There are limits to charitable immunity. A charitable hospital may be liable to beneficiaries for the negligence of physicians, nurses, and attendants whom they failed to select using due care. Cunningham v. Sheltering Arms, 119 N.Y.S. 1033, 1035 (N.Y. App. Div. 1909); Wilson v. Brooklyn Homeopathic Hosp., 89 N.Y.S. 619, 620 (N.Y. App. Div. 1904); Collins, 59 N.Y.S. at 66; Van Tassell v. Manhattan Eye & Ear Hosp., 15 N.Y.S. 620, 621 (N.Y. Gen. Term 1891). These cases make no distinction based on independent contractor or servant status. Similarly, those who are not beneficiaries of the charity (whom the majority calls strangers), such as hospital visitors, pedestrians, or other outsiders, may recover for the torts of the charity’s servants. Kellogg v. Church Charity Found., 112 N.Y.S. 566, 570–571 (N.Y. App. Div. 1908). In Kellogg, the plaintiff pedestrian was injured by the defendant’s ambulance driver. In announcing the exception, the court questioned the coherence of beneficiary theory, stating, “If the courts want to exempt such institutions, this may be a tenable, though some may think a rather ingenious or far-fetched, ground on which to do it. But no such acquiescence or waiver can be attributed to an outsider.” Id.; see also Hordern, 92 N.E. at 629 (reversing a directed verdict based on unqualified charitable immunity in favor of the non-beneficiary plaintiff mechanic injured during a boiler repair). Whether a patient who pays for services, as Mrs. Schloendorff did, is treated as the beneficiary of a charity and thus barred from obtaining redress for her injuries under charitable immunity is unsettled in New York. The majority erroneously cites several cases to assert there is no exception to charitable immunity for paying patients. Instead, those cases are decided on the grounds that the tortfeasor surgeons were not hospital servants. In Collins, the only negligence alleged was that of the non-servant surgeon who operated on the wrong side of the plaintiff’s body. Further, the plaintiff had paid the hospital for room and board only, and not for the surgery. The short discussion about whether payment negates charitable immunity in Collins was merely dicta, yet the majority here relies upon it. Similarly, in Wilson, the defendant was not liable for the negligence of a non-servant surgeon when the patient’s payment applied only to room and board, and not surgical fees. In fact, one might extrapolate from Collins and Wilson that payment for nursing care when the nurses’ conduct amounts to aiding battery, such as the facts indicate in this case, renders the hospital liable. Nonetheless, concluding that payment negates the patient’s beneficiary status creates the injustice of leaving the poor still without remedy for harms done under a benevolent cloak.

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B The majority rightly recognizes the distinction between charitable immunity for negligence and that for intentional torts, such as the battery here. There is little doubt that servants complicit in intentional torts render their master liable as joint tortfeasors. Kusnir v. Pressed Steel Car Co., 201 F. 146 (S.D.N.Y. 1912); Johnson v. Lawrence Hosp. for Women, 12 Ohio Dec. 802 (Ct. Comm. Pleas 1902) (noting that a master is jointly liable for misfeasance of his servant); Sharp v. Erie R.R. Co., 76 N.E. 923 (N.Y. 1906) (whether an employee’s allegedly tortious act was committed within the scope of employment, rendering the master jointly liable, was a question of fact for the jury). One who enters the hospital for care and treatment agrees to accept the benefits of that care and treatment. That a servant might occasionally act negligently in providing that care and treatment has an appropriate nexus to the charitable purpose of the hospital and benefit expected therefrom, making immunity for negligence suitable. By contrast, a patient who hopes to benefit from charitable care has no reason to anticipate that the hospital, or its nurses or doctors are inoculated from acts of intentional malfeasance, such as the battery described in the present case. A patient hoping to receive care who is instead the victim of battery is more analogous to an outsider. In both cases, the injury is outside the scope of reasonable expectations, including expected charitable benefits of care and treatment. Unlike distinctions based on payment status, excepting intentional torts from immunity leaves both the poor and paying patients on an equal footing. Therefore, I agree with the majority that in the case of intentional torts, a patient is more akin to a stranger and the non-beneficiary exception applies.

iii I part ways with the majority in their erroneous use of law, selective neglect of the facts, and unsupported assumptions about the nature of the modern hospital and its relationship to its physicians and nurses. These errors lead the majority to conclude that the nurses and the etherizer are not hospital servants, allowing the hospital to escape liability. In the alternative, the majority implies that even if they were servants, they are blameless because they are no more than helpless automatons who have no capacity, let alone duty, to think or speak on behalf of their patients. Once boarding houses where only visiting physicians attended to patients, hospitals now directly employ on-site house physicians to manage complex

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care in a scientific way. Advances in medicine, such as the germ theory and the advent of anesthesia, have transformed surgery from brutal and hasty butcheries performed under looming death to precise and methodical procedures for which death is the exception. Charles Scott Kilner, Progress of Abdominal Surgery, 2 Brit. Med. J. 2116, 141–144 (1901) (describing the change in death rates after hysterectomy from nearly 70% before 1876 to less that 10% thereafter); Edward B. Angell, The Modern Hospital: Its Value to the Patient and the Physician, 1 Amer. J. Nursing 10, 703–712 (1901). The contemporaneous professionalization of nursing has also contributed to improved survival and other progress. Nellie Schwartz, Nursing as a Profession, 4 Amer. J. Nursing 11, 834–836 (1904). Nurses have patient care responsibilities separate from simply following physicians’ orders. John H. Lowman, The Evolution and Development of the Nurse, 8 Amer. J. Nursing 8–17 (1907) (describing the modern nurse as no longer needing the same degree of specificity or supervision with the advent of trained, intelligent, alert nurses who need no specific orders for many aspects of proper nursing care); Katherine DeWitt & Linda Richards, The Opportunities and Responsibilities of the Graduate Nurse Today, 2 Amer. J. Nursing 75–82 (1901); Katherine DeWitt, Specialties in Nursing, 1 Amer. J. Nursing 14–17 (1900) (describing nursing duties that are separate from those of the physicians). New York was at the forefront of the heightened nursing educational requirements and professionalization and one of the first four states to institute nursing practice acts. Mary Elizabeth May, Nurse Training Schools of New York State Hospitals, 8 Amer. J. Nursing 18–24 (1903); Champe S. Andrews, The Campaign for Registration of Nurses in New York State, 3 Amer. J. Nursing 695–700 (1903). New York nurses displayed exceptional skill and competence in advocating for state licensure; according to Andrews, “they secured passage of a law which many organized professionals confined to men would have found great difficulty in securing.” Andrews, supra, at 700. By 1904, New York had required criteria for recognized training programs of at least two years before nurses could be registered by a board staffed by nurses themselves. Jane Elizabeth Hitchcock, Annual Report of the New York State Board of Nurse Examiners, 5 Amer. J. Nursing 171–180 (1904). The appellee hospital is a modern hospital, with twenty-five members of the Board of Governors responsible for “superintending the conduct of doctors and internes and nurses and other employees of the hospital.” R. at 86 (emphasis added). It runs a recognized training school for nurses. Id. at 171–172. The president, vice-president, and an inspection committee regularly visit the wards, speaking with the superintendents and nurses personally. Id. at 87. The superintendent is the final authority on who gets admitted and

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discharged from the hospital. Id. at 39–40, 98–99, 262. The Board also interviews and appoints house physicians, who are paid an annual salary, rise in rank from intern to full house physician, reside in the hospital, and have “general charge of all medical cases.” Id. at 81, 84–86, 92, 98, 178. Yet, the majority asserts that neither the etherizer nor the nurses are hospital servants. It also discounts that notice was given to the appellee hospital through the appellant’s many statements of non-consent to the etherizer and the nurses. This does not accord with the facts. A The record, contrary to the descriptions advanced by the majority, indicates that the etherizer both could have and should have informed the surgeon of Mrs. Schloendorff’s objections to surgery. His failure may implicate the hospital because house physicians, such as the etherizer, may properly be construed as hospital agents and may render the organization jointly liable for battery. See Glavin, 12 R.I. at 425 (describing physicians who are required to reside at the hospital and are paid in room and board as hospital agents). The majority erroneously states that the etherizer “took no part in the operation” and that “after the gas was administered, [appellant] was taken into another room.” This is not supported by the record. The surgeon himself stated that the “ether-giver remained until [he] got through my operation,” that “it is customary to keep him there until the operation is completed.” R. at 121. The nurse who wheeled the appellant into surgery also testified that the “ether doctor” went into the operating room and was present during the operation. Id. at 161. This is consistent with the medical literature. During the operation, the physician must “keep careful watch” over the patient. Albert H. Miller, Surgical Anaesthesia: Part II, 5 Amer. J. Nursing 97–100 (1904). “To properly anaesthetize and carry him through an operation is a task often more difficult that the operation itself.” Albert H. Miller, Surgical Anaesthesia, 5 Amer. J. of Nursing 25–28 (1904) (emphasis added). The etherizer had multiple opportunities to notify the surgeon of the appellant’s objection to surgery and had an obligation to do so. As a physician providing care directly to the appellant, his participation in care that was in direct violation of her revoked consent was tortious. Even assuming Mrs. Schloendorff had earlier consented but changed her mind, it was his duty to inform the surgeon of that fact, especially when the surgeon did not speak to the patient immediately before surgery. He should have provided the ether for examination and nothing more. The etherizer’s silence made him and the organization that employed him, complicit in the battery.

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B The majority states that nurses are not servants of the hospital, at least insofar as they are “treating a patient,” and incorrectly cites several cases to claim there is no distinction “between the positions of a nurse and that of a physician.” To the contrary, courts have consistently considered nurses as hospital servants. Joel v. Woman’s State Hosp., 35 N.Y.S. 37 (N.Y. App. Div. 1894) (presuming a nurse who caused a burn to a patient was an agent of the hospital); Conner v. Sisters of the Poor of St. Francis, 7 Ohio N.P. 514 (OH 1900) (describing a nurse who caused burns as the “employee and agent” of the charitable hospital); Hewett v. Woman’s Hosp. Aid Ass’n, 73 N.H. 556 (N.H. 1906) (describing a nurse as an employee where, whether an apprentice or fully trained nurse, she was “engaged to do a necessary part of the work of maintaining a hospital for the sick”); Johnson, 12 Ohio Dec. at 797 (presuming nurses are servants of the hospital); Fawcett v. Ryder, 135 N.W. 800 (N.D. 1912) (accepting as fact that nurses are the servants of hospitals). In Powers, a nurse caused a severe burn after allegedly leaving a hot-water bottle against the plaintiff’s skin. The court described her as an employee and servant of the hospital, but it held that respondeat superior did not apply to the nurse’s negligence because the plaintiff was a beneficiary of the charity hospital. However, if masters are responsible for the intentional torts of servants, including aiding and abetting intentional torts, the hospital would be liable for the nurse’s acts. In Ward v. St. Vincent’s Hospital, 79 N.Y.S. 1004 (N.Y. App. Div.1903), the question of master and servant was not addressed at all. The case involved an appeal of a second trial of alleged breach of contract for competent care between the hospital and patient. Hillyer v. St. Bartholomew’s, (1909) 2 K.B. 820, determined that a hospital was not liable for the actions of a surgeon because it lacked sufficient control over the surgeon and assistants during an active surgery only. And Cunningham v. Sheltering Arms, 119 N.Y.S. 1033 (App. Div. 1909), does not concern a hospital, physician, or nurse at all, but the alleged negligence of a childcare worker. In fact, one might characterize nursing care as the very soul of the hospital and the only thing that separates care within the hospital from that of a boarding house. The entire charitable hospital’s purpose is care and treatment of the sick, yet the majority expects us to believe that the hospital has nothing to do with said care. In fact, the hospital has extensive control of its nurses, a critical factor in determining agency. The appellee selects, trains, and employs the nurses that staff its wards and operating rooms. They oversee a hierarchy of nurses from the superintendent of nursing down to nurse pupils; in fact, pupils comprised most of the nurses caring for Mrs. Schloendorff. R. at 129, 133, 159,

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168. According to the superintendent of the training school, those pupils were selected “through a method employed by the defendant through me in the selection and appointment and designation of trained nurses.” Id. at 172 (emphasis added). It is hard to understand how a hospital that controls training, selection, and employment of nurses could also claim they were not a master to the servant nurses in the execution of the very purpose of the hospital’s existence – providing care to the sick.

C The majority particularly contorts the facts to absolve the hospital of joint liability by painting nurses as individuals without agency, thought, or discretion. They seem unable to conceptualize nurses outside of their relation to physicians. The majority also strongly implies that the visiting surgeon’s eminence and the other physicians’ merits negate the nurses’ duties to their patient. Further, the majority implies that any concerns about the patient’s wishes or understandings must be premised on a belief (absent here) that the “distinguished surgeon intended to mutilate” the appellant. Nurses need not distrust the physician to respond appropriately to a patient’s, such as Mrs. Schloendorff’s, serious concerns about what was about to be done to her body while helpless and under the effects of ether. The nurse had an obligation to do so. The patient may have changed her mind. There may have been a miscommunication. And yes, the surgeon may have intended to trick her into an operation. The reasons do not matter. The nurse is the one person in the position between the patient and the absent surgeon (who was not present in the hospital the evening before the surgery and did not speak to appellant before the surgery) and able to communicate urgent information regarding the patient’s objection to surgery. Who else, besides the very people entrusted to care for her in the surgeon’s absence, was the appellant expected to look to for help? How many more desperate pleas were required as the night nurse continued the extensive preparation for surgery, a process that she and other nurses acknowledged was far more extensive than for an examination? R. at 130–131, 133–134, 138, 156; see also Anna Maxwell & Elizabeth Pope, Chapter XX: Care of Patients before and after Operation, in Practical Nursing, A Text-Book for Nurses and a Handbook for All Who Care for the Sick (1910). Throughout the shaving, the scrubbing with three separate substances, and a poultice application, we are expected to believe that the nurse explained nothing about the process and “had no talk with her on the subject of the operation.” R. at 138.

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Perhaps the greatest insult is the majority’s assertion that a nurse is not “not qualified to judge” whether a patient deserved candor because “she is drilled to habits of strict obedience and accustomed to rely unquestioningly upon the judgment of her superiors.” This is a most condescending and uninformed characterization of nursing. Of all the people in the hospital, the nurse who is with the patient day and night is best positioned to judge the patient’s ability to handle truthful information and address her concerns with candor and communication. This type of decision is not the kind of thing to which doctors’ orders and “strict obedience” apply. Instead, it is squarely within the authority and expertise of the nurse. Maxwell & Pope, supra (describing truth-telling as an essential virtue in nursing that includes candor and honesty of purpose while also noting that anxiety and nervousness will impede recovery and directing nurses to tactfully ascertain its source to alleviate distress); Nightingale, supra at 25 (describing the harm that anticipation and uncertainty cause patients). “Nursing calls for right principles of conduct; not for a blind, ignorant obedience.” Charlotte M. Perry, 6 Amer. J. Nursing 448–452, 451 (1906). The nurse’s best attribute is her power to think, described by Nellie Schwartz as “that one indispensable thing that is more precious than gold.” Schwartz, supra, at 835 (also noting nurses are “not merely machines automatically doing the bidding of the physicians”). Here, the nurses owed Mrs. Schloendorff their honesty, care, and protection – obligations which they should have fulfilled by notifying their supervisors of the conflict between the patient’s refusal and the surgeon’s plans to operate. They also had an obligation to communicate those concerns to the nurse assuming care when their shift ended. To expect less is to minimize the professional role and reasonable expectations of care that attend registration of nurses in New York as well as imperil those receiving their care: The nurse cannot shield herself behind the ignorance or carelessness of the physician, when . . . a nurse of ordinary care and skill ought to know better. I urged you not to think that blind obedience to a physician, who you know or should know, is doing wrong will exonerate you from liability. Under such circumstances you must be more than a mere automaton . . . There can be no question as to the liability of a nurse . . . [s]he then becomes an active party to the deceit . . . [t]he law, however, does not justify such conduct.

Walter H. Saunders, The Legal Responsibility of the Nurse, 5 Am. J. Nursing 860–873 (1905). The majority also imagines a scenario in which only significant “struggles and outcries” are sufficient to give notice of non-consent to the hospital. To

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require such dramatic protest is barbaric and unreasonable. And what conclusions can be drawn about any patient’s safety under the appellee’s care if the law accepts that Mrs. Schloendorff’s protests and efforts were properly ignored and unheeded? The majority’s condescending characterization of the appellant’s less desperate pleas as “nervous and excited” leaves little doubt that more vocal struggles and outcries would be proportionately discounted. In fact, they validate the nurse’s acquiescence “in the statement that an ether examination was all that was intended” and advocate for deception, saying that telling the patient the truth may cause “needless and harmful agitation.” It is difficult to imagine a more harmful and unjust posture than this court endorsing willful neglect of a patient’s distress and makes this justice wonder if the majority would express the same zeal for deception if Mrs. Schloendorff had been a Mr. Mrs. Schloendorff, who left the hospital a shadow of her former self, now leaves the judicial system less than whole. And once again, it is an unjust outcome. The majority’s conclusions are erroneous. They misconstrue the record and take imprudent liberties with previous cases to reach their conclusion. These unstable foundations are combined with long-abandoned notions of nursing to produce a majority opinion that leaves Mrs. Schloendorff abandoned again. But it is a harmful opinion in other ways too. The opinion perpetuates an impression of nurses as little more than monkeys in service to their organ-grinder physicians. And that impression will leave future patients without a remedy for the wrongs of nurses. The nurses here, like elsewhere, are professionals with independent duties and obligations to the well-being of their patients, including notifying their supervisors of an impending intentional wrong by visiting surgeons. The proper conclusion based on the record, previous cases, and factual realities of modern hospitals is to deny the hospital the shield of charitable immunity. At a minimum, the exception for contract remedies for paying patients should have allowed Mrs. Schloendorff’s case to have been considered by a jury. A closer examination of the record and cases, however, leads me to conclude that the nurses’ failures and their cooperation (along with the etherizer) in battery render them and the hospital that selected, trained, and employed them as joint tortfeasors in facilitating and participating in battery. I respectfully dissent.

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3 Commentary on Reynolds v. McNichols aziza ahmed

background The 1973 case Reynolds v. McNichols1 concerns a woman who was repeatedly arrested on suspicion of, and for, “prostitution.”2 Roxanne Reynolds was arrested under a municipal ordinance that allowed police to “hold and treat” women arrested for prostitution.3 Section 735 of the Revised Municipal Code of the City and County of Denver directed the Department of Health and Hospitals (DHH) “to use every available means to ascertain the existence of and investigate all suspected cases of communicable venereal disease, and to determine the sources of such infections.”4 The ordinance authorized police to issue “walk-in” orders for persons “reasonably suspected” of being infected with a sexually transmitted infection (STI) to report to DHH for medical examination, testing, and treatment. Persons suspected of having an STI “by virtue of the fact that they had been arrested and charged with . . . solicitation and prostitution” could be detained in jail for 48 hours for examination and treatment.5 Alternatively, they could accept treatment with penicillin and be eligible for immediate release. Reynolds was twenty-seven years old and, according to the decision, described herself as a “model and prostitute.”6 Her first arrest occurred in 1 2

3

4 5 6

Reynolds v. McNichols, 488 F.2d 1378 (10th Cir. 1973). I utilize the language of sex work in this commentary. I use the word “prostitute” or “prostitution” when I am citing or referring to Reynolds or related legislation. This commentary assumes that sex workers are women. While sex workers represent a diverse range of genders, the laws discussed here specifically targeted women. Today we have more information on the gendered and racialized profiling of sex workers targeting a wider range of individuals in the context of public health and beyond. Br. for Appellees at 2, Reynolds v. McNichols, 488 F.2d 1378 (10th Cir. 1973). Reynolds, 488 F.2d at 1381. Id. at 1380.

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November 1970; police found her in a hotel room with a man, and she admitted at trial that she had been paid to have sex with him. Although no sexual activity had taken place, Reynolds was arrested and placed in the city jail. She was charged with solicitation and prostitution. Reynolds was given a “deferred prosecution,” which allowed her to be released without having to plead guilty or not guilty, and the charges were dismissed. Prior to her release, she had blood drawn for testing and was given an injection of penicillin, possibly because she opted to do so in exchange for being released, though the decision notes that the record was “not too clear” on this point.7 In May and July 1971, she was told that she had to report to DHH because she had been soliciting acts of prostitution. While at DHH, she was examined for STIs. On her first visit in May, she was found to have gonorrhea and was then treated for it. The second visit in June did not show a positive result for STIs. On her third order to arrive at DHH in May 1972, Reynolds arrived with a lawyer and refused to be examined. In June 1972, Reynolds was arrested again in a hotel room. Although she was arrested for prostitution, she argued that a final agreement for sexual exchange had not yet been reached. When placed in jail, she was given the option of being held for 48 hours, during which time she would be examined and, if needed, treated for an STI. Alternatively, she could agree to be treated for an STI without awaiting confirmation that she actually had one. She chose to be released with medication.8 The Denver ordinance that authorized Reynolds’ detention, examination, and treatment is part of a long history of the regulation of disease through the control and management of women’s bodies. While at different points in history many types of women have been implicated in the management of disease, sex workers, who are frequently economically and socially disenfranchised, have borne the brunt of these efforts. This history places Reynolds in context – showing how it is just one instance in a much larger story of the control and management of women’s bodies. From at least the midnineteenth century, sex workers have long been the subject of coercive laws to control the spread of disease.9 The focus on sex workers has always been contested, both by sex workers and by advocates who felt that the targeting of sex workers discriminated against women. 7

8 9

Id. Because the lower court did not publish an opinion and the entire transcript was not available for review, Professor Wendy Parmet and I have relied on the Tenth Circuit’s opinion, the briefs, and the portion of the unpublished trial transcript that Parmet was able to obtain. Id. Aziza Ahmed, Trafficked? AIDS, Criminal Law, and the Politics of Measurement, 70 U. Miami L. Rev. 96 (2015).

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In his comprehensive history of STIs, No Magic Bullet: A Social History of Venereal Disease in the United States since 1880, historian Allan Brandt shows that early twentieth-century eugenicists concerned for the future of a “superior race” fixated on prostitution as the primary way in which venereal disease was being spread.10 Most major cities had “red-light districts,” often closely monitored by the police and city officials. “Purity crusaders” were able to galvanize fears of venereal disease to close down these areas. The movement to end prostitution merged with a larger narrative at the time: that of “white slavery” – the idea that young white women were being lured into prostitution. By 1910, Congress passed the Mann Act,11 which aimed to curb the purported prostitution of white women.12 Though the Mann Act reflected the idea that women selling sex were victims of trickery, by channeling resources toward law enforcement, it continued to facilitate a punitive approach to sex work. Similar laws were passed at the state level. In New York, for example, the Inferior Courts Act aimed to end the spread of disease by focusing on prostitutes. The law provided for the medical examination of women found guilty of soliciting and mandated detention during the course of treatment if a woman was found to have an STI.13 Reynolds was decided in 1973 during a resurgence of STIs. Like laws before it, the Denver municipal ordinance that Reynolds challenged was designed to control the spread of STIs by targeting sex workers. The Denver ordinance defined the persons who may be “reasonably suspected to have a venereal disease” to include “[a]ny person who is arrested and charged . . . with an offense in the nature of or involving vagrancy, prostitution . . . or any offense related to sex.” It also provided that “every suspected person detained in jail . . . shall be examined by the Department of Health and Hospitals for the purpose of determining whether or not such person is, in fact, infected with a communicable venereal disease.” In other words, as during every major period before it, regulating prostitution became central to controlling the spread of disease. After her June 1972 arrest, Roxanne Reynolds filed a suit against city officials, relying on the Fourth and Fourteenth Amendments. Reynolds argued that the ordinance was unconstitutional and, alternatively, that even if constitutional on its face, it was unconstitutional as applied to her. She argued first that the ordinance’s allowance of involuntary detention, 10

11 12

13

Allan Brandt, No Magic Bullet: A Social History of Venereal Disease in the United States since 1880 19 (1985). Pub. L. No. 61–277, 36 Stat. 825a (1910). Pub. L. No. 61–277, 36 Stat. 825a (1910). For a history of the race, gender, and sexuality politics of the Mann Act see generally Jessica Pliley, Policing Sexuality: The Mann Act and the Making of the FBI (2014). Brandt, supra note 10, at 40.

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examination, and treatment was each a violation of her Fourteenth Amendment right to be secure in her person. Second, she argued that there was no clear class of persons to whom police were to apply the ordinance, and thus, the ordinance lacked adequate guidelines. Third, she argued that the option to leave after taking penicillin under threat of jail time resulted in an unconstitutional coercion of the person and an invasion of her right to privacy. Fourth, she argued that it was not accepted medical practice to treat someone for a condition without examining them first. Finally, she argued that the city applied the ordinance against female sex workers but not their male clients, which violated the Equal Protection Clause.14

original opinion The Tenth Circuit rejected Roxanne Reynolds’ arguments. The court held that the acts of the state – the involuntary detention and treatment – were within the police power “designed to protect public health.”15 The court tossed out Reynolds’ equal protection claim, addressing it only to say that, because there was no evidence that she had actually had sex with her clients, there was no reason that the men should be arrested. In keeping with the long history of detaining sex workers for the sake of controlling disease, the court found that it was within the city’s purview to profile sex workers as sites of STIs, stating that “[p]rostitution and venereal disease are no strangers.”16 Having established that sex workers are an appropriate target of punitive efforts to control the spread of STIs, the court turned to the authority of the city to enact such an ordinance. The court found that the ordinance’s requirements of involuntary detention, examination for an STI during the detention, and treatment of the person were constitutional. The court of appeals drove home this point by highlighting that the Supreme Court had found that the police power of the states includes the power to vaccinate and quarantine individuals. In turn, the Tenth Circuit found that limited detention in jail without bond “for the purpose of examination and treatment for a venereal disease for the purpose of involuntary examination and treatment” was valid under the police power. Finding that involuntary detention, examination, and treatment were valid under the police power, the court then easily concluded that the law was not unconstitutionally applied to Reynolds.17 14 15 16 17

Reynolds, 488 F.2d at 1381. Id. at 1382. Id. Id. at 1383.

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The court threw out the equal protection claim that the ordinance was only being applied to women. The court found that it was not significant that Reynolds’s clients were not arrested. And, despite the fact that no sex was exchanged for money, the court ignored the obvious problem that only Reynolds was arrested and tested, and the men were not. The court concluded that it is the prostitute that is the “primary source of venereal disease.”18

feminist judgment In her rewritten opinion, Professor Wendy E. Parmet, writing as Judge Parmet, deploys a feminist lens to issue a new majority opinion finding for Reynolds. First, by excavating the long history of public health law with an eye toward how this history impacts the experiences of women, Parmet finds that arresting, detaining and treating only women – and not their male clients – is an equal protection violation. Second, through a detailed review of the probable cause requirement of the Fourth Amendment, Parmet’s rewritten decision highlights that the City of Denver does not have probable cause to detain and arrest a person simply because she is a sex worker. And, finally, Parmet introduces a new line of reasoning on the right to privacy. Reynolds, decided in the same year as Roe v. Wade,19 provides an opportunity to reinforce the idea of women’s bodily autonomy and emphasizes that a person has the right to refuse treatment. Unlike the original opinion, which dismissed the equal protection claim, Parmet’s feminist judgment takes seriously the idea that selective targeting of women under Section 735 on the basis of sex is unconstitutional. Parmet places the Reynolds case in line with similar cases including Reed v. Reed,20 decided only two years before Reynolds. Following Reed, the rewritten opinion holds that although Section 735 does not facially discriminate on the basis of sex, Reynolds convincingly shows that the ordinance was being applied unequally to women. This was particularly true because the men with whom she had sex might have had an STI, which could have been transmitted to her, but this possibility is ignored in the city’s public health response to STIs. Parmet also relies on cases that specifically grappled with discrimination in the context of public health campaigns in the late nineteenth and early

18 19 20

Id. 410 U.S. 113 (1973). 404 U.S. 71 (1971).

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twentieth centuries. She focuses on particularly Jew Ho v. Williamson,21 one of the most important cases in which the courts curtailed anti-immigrant sentiment in public health. In Jew Ho, a federal court ruled that a quarantine for bubonic plague that was selectively enforced against residents of Chinese descent was unconstitutional. Parmet cites Jew Ho for the proposition that protecting the public from communicable diseases “does not justify the discriminatory application of highly coercive and intrusive public health measures.” Because there is no reason to believe that women are especially prone to spreading STIs, Parmet concludes that the focus on women and the exclusion of men can actually undermine the public health program. Most obviously this happens when female sex workers contract STIs from their male clients, making the clients just as likely to be a “source” of disease. The focus on women is discriminatory. Parmet’s opinion, which has the effect of protecting the civil rights and civil liberties of women who sell sex, also finds Fourth Amendment violations in the failure to obtain a warrant before forcing a woman to submit to a medical examination or remain in detention. Citing Jacobson v. Massachusetts,22 Parmet acknowledges that the state has wide latitude to act in the context of protecting the public from communicable diseases, but she notes that it is still necessary to get a warrant before performing routine health and safety searches. While Parmet acknowledges that individual rights may give way to state efforts to protect the public health, she emphasizes that public health exceptions to civil rights and civil liberties are limited in scope to situations in which there is an emergency. Finding warrants to be necessary calls for a discussion of probable cause. But probable cause requires individualized review, and, as Parmet highlights, the broad assumptions of the ordinance, including that anyone who is “reasonably suspected to have had contact with another individual reasonably believed to have had a communicable venereal disease” will transmit a disease to others, are far from an individualized review. And, even if the court takes seriously that it must defer to the legislature for defining the targeted class of people, Parmet finds that the higher rates of gonorrhea in the sex worker community do not justify the targeting of sex workers as though they all have an STI. As the feminist rewrite highlights, Section 735 further authorizes a compulsory examination of those who have been arrested for prostitution, and the class of people also includes those charged with vagrancy. This lacks any basis

21 22

103 F.10 (N.D. Cal. 1900). 197 U.S. 11 (1905).

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in law. As a 1921 decision relied on by Parmet, In re Application of Arata,23 points out, the mere fact that a person is suspected of prostitution is “insufficient to establish probable cause that she is infected with a venereal disease.” Finally, drawing on a line of cases on the right to privacy, including Griswold v. Connecticut24 in 1964 and Roe v. Wade in 1973, Parmet holds that coercing a woman to accept treatment without consent or diagnosis violates her right to privacy. Parmet also holds that informed consent must govern the treatment of people for STIs. Guided by informed consent, patients would receive all information relevant to their treatment and would be able to exert control over their own bodies. As Parmet holds, there should not be an exception for sex workers. Throughout her opinion, Parmet uses the term “prostitute,” which was also used in the original opinion. In the first line of her opinion, she highlights that “prostitute” is a label Reynolds gave herself. Parmet relies on a quotation from the original opinion to do so, but her phrasing is subtly different. The Tenth Circuit’s tone comes across as condescending and skeptical of the plaintiff’s assertion that she worked as a model: “The plaintiff, a twenty-seven year old female, who described herself as a model and prostitute, moved to Denver in the fall of 1970, and she first came to the attention of the Denver Police Department on November 29, 1970.”25 Parmet, in contrast, accepts the plaintiff’s description of herself as accurate while also emphasizing her agency: “[T]wenty-seven-yearold Roxanne Reynolds is a model and, in her own words, a ‘prostitute.’”

discussion The regulation of women’s bodies has long been a part of the management and control of disease. The Reynolds case represents a moment in which one woman impacted by the law attempted to push back on existing legislation to protect her civil rights and civil liberties. While Reynolds lost her case in the original opinion, Parmet’s feminist rewrite takes seriously the discriminatory impact of Section 735 against women and protects the civil rights and civil liberties of those targeted by the ordinance. Parmet’s reliance on Jew Ho highlights how linking prostitution and disease has also served as a way to control immigration in the United States. This was especially evident in the discriminatory treatment of Chinese immigrants in the nineteenth century. The Page Act in 1875, for example, banned Chinese 23 24 25

198 P. 814 (Cal. App. 1921). 381 U.S. 479 (1965). Reynolds v. McNichols, 488 F.2d 1378, 1380 (10th Cir. 1973).

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“prostitutes” from entering the United States.26 Women identified as prostitutes, as stated by Professor Kerry Abrams, were seen to be “harbingers of disease” and “moral death.”27 Legal challenges to the Page Act resulted in courts legitimating this idea. In the 1874 decision Ex parte Ah Fook,28 for example, the Supreme Court of California found that the Page Act effectuated through the quarantine and health laws of the state. With their finding, the court reflected broader antiChinese attitudes of the time. Sadly, Jew Ho was the exception, rather than the rule, but Parmet uses it to excellent effect, demonstrating how the Equal Protection Clause can be used to address intersectional harms done to women, sex workers, and immigrants in the guise of disease control. If Parmet’s feminist rewrite had been the actual opinion in Reynolds, it could have shaped the subsequent development of public health law. The failure to protect the civil liberties and civil rights of sex workers had broad effects in the decades that followed the original Reynolds opinion, as HIV began to spread among sex workers and others. As epidemiological evidence now demonstrates, a less punitive approach based on harm reduction, one that respected basic civil rights and civil liberties and enabled better access to public health programs, would have been a more effective method of stopping the spread of HIV and ensuring greater access to treatment. Parmet’s rewritten opinion could have set the stage for this approach to a public health response and contributed to a more effective response to subsequent public health problems such as HIV. A feminist decision, like Parmet’s, could have shifted the legal landscape addressing STIs and sex work away from a punitive approach to a more effective and less stigmatizing harm-reduction approach. In doing so, the rewritten decision would not only have benefited the women targeted by the ordinance, but it would likely have improved public health outcomes without coercion and discrimination. Parmet’s feminist view could be characterized as a mode of sex-positive, harm-reduction feminism. Parmet’s feminism is sex-positive because it supports the rights of sex workers to work safely, implicitly affirming that sex workers can empower themselves financially through exchanging sex for money. And, it is harm-reduction feminism because it supports the arguments made by sex workers’ organizations who called for a decriminalization of “all aspects of adult prostitution resulting from individual decision.”29

26 27

28 29

Pub. L. No. 43–141, 18 Stat. 477 (1875). Kerry Abrams, Polygamy, Prostitution, and the Federalization of Immigration, 105 Colum. L. Rev. 641, 661 (2005). 49 Cal. 402 (Cal. 1874). Gail Pheterson, A Vindication of the Rights of Whores 3 (1989).

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This sex-positive, harm-reduction perspective was espoused by the sex workers’ organizations that were beginning to coalesce as the Reynolds case was taking place.30 Unlike the punitive mandatory testing and treatment regimes, sex workers called for policies based on harm reduction. They challenged the punitive abolitionist perspective, arguing for decreasing the harms faced by sex workers in the course of selling sex. Focusing primarily on drug use, a broad-based alliance including physicians, activists, and public health officials eventually joined sex workers in advocating for harm reduction.31 Despite wide support from public health experts and affected communities, harm reduction could not unseat the reigning abolitionist approach that dominated the response to drug use, sex work, and addiction. The abolitionist focus mapped onto the broader push to utilize criminal law and criminal lawlike methods (including detention and treatment) to address the spread of STIs including HIV and AIDS. If Parmet’s decision had been the holding, as evidence now clearly shows, we might have better curtailed the spread of STIs, including HIV. The original Reynolds decision is illustrative of the punitive way in which we continue to treat sex workers in the context of addressing the spread of STIs. Since Reynolds, sex workers and others advocating for less punitive approaches to addressing STIs, have only had partial success as public health rationales continue to justify the existence of many laws designed to detain, treat, and punish women arrested for prostitution-related crimes.32 The struggle for sex workers to be treated with basic respect in the context of public health prevention programs continues today.

REYNOLDS V. MCNICHOLS, 488 F.2D 1378 (10TH CIR. 1973)

wendy e. parmet, circuit judge, delivered the opinion of the court Appellant Roxanne Reynolds brought the instant action under 42 U.S.C. Sections 1983 and 1985 alleging that Section 735 et seq. of Denver’s Revised 30

31

32

Kamala Kempadoo & Jo Doezema, Global Sex Workers: Rights, Resistance, and Redefinition 19 (1998). Melissa Hope Ditmore, When Sex Work and Drug Use Overlap: Considerations for Advocacy and Practice 1, 9 (2013). Aziza Ahmed, Sienna Baskin et al., Criminal Laws on Sex Work and HIV: A Mapping, 93 Denv. U. L. Rev. 355 (2016).

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Municipal Code and its application to her violates the Fourth and Fourteenth Amendments to the Constitution. Following a bench trial, the district court found for the appellees, the City and County of Denver, Denver’s mayor, and other city officials (the appellees) on all counts. For the reasons set forth below, we reverse.

i Twenty-seven-year-old Roxanne Reynolds is a model and, in her own words, a “prostitute.” Shortly after moving to Denver on November 29, 1970, she was arrested by the Denver Police Department (DPD) while at a hotel in the company of a man who was not her husband. At the trial, she testified that although she was planning on having sexual relations with him, she was fully clothed and having a drink at the time of the arrest. While she was in jail following this arrest, pursuant to Sec. 735 of Denver’s municipal code, which authorizes officials to detain, examine, and treat individuals who are “reasonably suspected” of having a venereal disease, she was given a blood test to determine if she had a venereal disease. Appellees were especially concerned that she might have gonorrhea, which was then prevalent in Denver. In women, diagnosis of gonorrhea is not based on a blood test, but instead “requires cultivation of the gonococcus from a specimen acquired by a physician from an infected genitourinary, rectal, or other site.” Douglas S. Kellogg Jr., Current Research Activities at the Center for Disease Control, 88 Health Servs. Rep. 13, 14 (1973). Appellees do not appear at that time to have collected any specimens other than blood. Despite the lack of any evidence showing that she had gonorrhea, and presumably before the results of the blood test were available, she was injected with penicillin, as authorized by Sec. 735. She was then released from custody subject to a deferred prosecution. All charges were eventually dropped. Over the course of the next two years, Ms. Reynolds had several additional encounters with the appellees. On May 8 and July 8, 1971, she received “walkin” orders from the DPD. On both occasions, she was ordered to report to the Denver Department of Health and Hospitals (DHH) for a physical examination and possible treatment of a venereal disease. In May 1971, she submitted to such examination. She was found to have gonorrhea and was treated for it. In July 1971, she again submitted to an examination which proved negative. On neither occasion was she charged with any crime. On May 1, 1972, the DPD issued another “walk-in” order as Ms. Reynolds was preparing to enter a motel. As required, she reported to the DHH, but once there, she refused to submit to another physical examination.

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On June 19, 1972, she was once again arrested in a hotel room with a male to whom she was not married. Following the arrest, she was charged with solicitation and prostitution. She was then told that unless she agreed to be treated with penicillin, without any medical examination, she would be examined and held for at least forty-eight hours, after which time she would be treated if the tests showed that she had a venereal disease. Faced with the Hobson’s choice of detention with compelled examination, or treatment for a disease for which she had not been diagnosed, she opted for the latter and accepted the penicillin. She was then released. At no point in June 1972 was she diagnosed with gonorrhea or any other venereal disease. Nor did the appellees have any medical reason to conclude that she needed treatment as a result of her diagnosis in May 1971. Indeed, she had tested negative for the disease in July 1971 following the treatment for her May infection. Moreover, at no relevant time was Reynolds convicted of prostitution or any similar criminal offense. In her civil rights action, Reynolds claims that Sec. 735 on its face and as applied to her violates the Fourth and Fourteenth Amendments to the Constitution. She seeks money damages as well as a declaratory judgment. Following a bench trial, District Court Judge Fred M. Winner concluded that the “officers and all of the defendants were completely and totally justified in that which they did, that they had reasonable grounds to believe that the plaintiff was, indeed, an active prostitute” and that “physical examination of persons engaged in the profession of prostitution are [sic] not an unreasonable impairment of their rights or their liberties.” The court ordered judgment and costs for the appellees. For the reasons explained further below, we reverse.

ii Sec. 735, which lies at the heart of this case, is Denver’s version of a hold and treat law. Hold and treat laws, which became very common in the early years of this century, are a variant of quarantine laws. Like quarantine laws, they authorize the detention of an individual without criminal trial to prevent the spread of a communicable disease. Unlike traditional quarantine laws, they focus on a discrete set of diseases, those that are sexually transmitted, and permit officials to conduct medical examinations and require treatment as a condition of release. Notably, these laws tend to target specific classes of individuals, usually those who are suspected of or have been charged with prostitution, vagrancy, or other sex crimes. Sec. 735 follows this template. Subsection 1 authorizes DHH to “use every available means to ascertain the existence of and investigate immediately all

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suspected cases of communicable venereal disease.” It further states that individuals “reasonably suspected to be infected with a communicable venereal disease may be detained in jail, examined, and if determined to be so infected, treated, in accordance with the provisions of this section.” Sec. 735 1.1 (emphasis added). The ordinance goes on to list several classes of individuals who “may be reasonably suspected to have a venereal disease” and thus be subject to the section’s other provisions. Id. Among those who are deemed “reasonably suspected” of having a communicable disease are individuals who have been “arrested and charged” with “vagrancy, prostitution, rape . . . or another offense related to sex and any person convicted of such offense” as well as anyone who is “reasonably suspected to have had a contact with another individual reasonably believed to have had a communicable disease at the time of such contact” or anyone who “is reasonably believed to be engaged in any activity which may have occasioned exposure” to a venereal disease. Id. Under subsection 1-2, individuals who are reasonably suspected of having a venereal disease may be detained in jail “for such time as is reasonably necessary to examine such person and render treatment.” The ordinance further states that individuals who are detained “shall be examined” and “shall submit to such examinations as are necessary and permit specimens to be taken for laboratory analysis” to determine if they have a venereal disease. Sec. 735.1.1-3. Subsection 1-4 requires DHH to treat those who have been found to have a venereal disease. Critically, the ordinance does not require officials to obtain either a warrant or judicial order before holding an individual or subjecting them to a medical examination. Nor does it require that the individual consent to the medical examination or treatment.

iii Reynolds alleges that the appellees violated the Equal Protection Clause of the Fourteenth Amendment by enforcing Sec. 735 against her, but not against similarly situated men. The trial court rejected this claim. We reverse. There can be no question that the Equal Protection Clause protects against some forms of sex-based discrimination. In Reed v. Reed, the Supreme Court held that classifications that favor one sex or another must “be reasonable, not arbitrary, and must rest upon some ground of difference having a fair and substantial relation to the object of the legislation, so that all persons similarly circumstanced shall be treated alike.” 404 U.S. 71, 76 (1971) (quoting Royster Guana Co. v. Virginia, 253 U.S. 412, 415 (1920)). The Court in Reed then went

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on to find that an Idaho law that gave men a preference over women in determining entitlement for appointment as administrator of an estate was “the very kind of arbitrary legislative choices forbidden by the Equal Protection Clause.” Id. at 76. Unlike the statute at issue in Reed, Sec. 735 does not, on its face, discriminate on the basis of sex. The ordinance uses sex-neutral language, and theoretically can be applied to men and women equally. Reynolds, however, argues that the appellees’ application of the ordinance to her was based on her sex. In support of this contention, she notes that on the two occasions in which she was arrested while at a hotel with a man, the man was neither detained nor subjected to Sec. 735. The appellees do not disagree with the appellant’s contention as to the facts, but argue that the officers who detained Reynolds had no reason to believe that she had already had sexual relations with the men who were with her at the time of her arrest, and therefore, there was no reason for the officers to suspect that the men had a venereal disease. We assume that in making this argument, the appellees are suggesting that if the men did not have sexual contact with Reynolds, they did not fall into one of the classes of individuals who Sec. 735 designates as reasonably suspected of having a venereal disease. As we discuss below, this argument does not provide a non-discriminatory rationale for the appellees’ decision to hold and treat Reynolds but not the men she was with at the time of her arrests. In Yick Wo v. Hopkins, the Supreme Court explained that: [t]hough the law itself be fair on its face, and impartial in its appearance, yet, if it is applied and administered by public authority with an evil eye and an unequal hand, so as practically to make unjust and illegal discriminations between persons in similar circumstances, material to their rights, the denial of equal justice is still within the prohibitions of the constitution.

118 U.S. 356, 37374 (1886). A few years later, a federal district court relied on Yick Wo to strike down a quarantine for bubonic plague that was enforced against members of San Francisco’s Chinese community, while other residents in the affected area were exempted. Jew Ho v. Williamson, 103 F. 10, 23 (1900). As Jew Ho makes clear, the protection of the public from communicable diseases does not justify the discriminatory application of highly coercive and intrusive public health measures. To the contrary, public health protection requires that such measures be used in ways that are grounded in public health evidence, rather than prejudicial assumptions about who does and does not harbor disease. We have seen no evidence suggesting, nor do we know of any reason to believe, that women are especially prone to spreading venereal diseases.

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Although society has long blamed women, especially female prostitutes and those who are thought to have failed to conform to society’s moral code, for venereal disease, such assumptions are no more based on medical evidence than was the invidious and stereotypical assumption that Asians are primarily responsible for the plague that lay behind the San Francisco’s unconstitutional quarantine in Jew Ho. In both instances, groups who are highly vulnerable for a disease that can infect anyone were treated as if they were the source of disease, while the risks of infection that they faced were overlooked. As the court explained in Jew Ho, such discriminatory applications of public health laws can undermine their effectiveness. After all, if a health law reflects discriminatory attitudes about classes of individuals, rather than the best available medical evidence, it will not protect the public from the actual causes of the disease. We recognize that some earlier opinions regarding hold and treat laws seemed to rely on just such invidious and discriminatory judgments. For example, in Ex parte Arata, the court justified a presumption that a woman who was found to be a prostitute had a venereal disease by stating “[t]he presumption which this statement allows to be made as against the individual in the first instance has its foundation in the fact that women of ill fame, by the very nature of their occupation, indulge in repeated and promiscuous acts of sexual intercourse.” 198 P. 814, 816 (Cal. App. 1921), quoted by Ex parte Fowler, 184 P.2d 814, 820 (1947). Such cases, however, predate Reed v. Reed and do not reflect that case’s application of the Equal Protection Clause to sex discrimination. In this case, the fact that Reynolds was twice arrested at a hotel and subjected to a hold and treat order for being with a man who was not her husband, while neither man was arrested or subjected to a health order, points strongly to the possibility that Denver has applied Sec. 735 with an “evil eye and uneven hand.” Yick Wo, 118 U.S. at 37374. If merely being in a hotel with someone of the opposite sex raises alarms about a woman having a venereal disease, it should do so for men as well. The fact that at the time of her arrest Reynolds had not had sexual relations with the men who were with her did not negate the possibility that they were infected any more than it reduced the chance that she was infected. After all, if female prostitutes are infected with a venereal disease, they are likely to have contracted the infection from their male customers. The record offers no reason for the appellees to assume that Reynolds would endanger the men she was with without being equally concerned about the risks those men posed to her health. Nor does Sec. 735.1-1(2)’s designation of people who are arrested for and charged with a sexual crime as “reasonably suspected” of being infected with a communicable disease provide a non-discriminatory justification for the

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unequal treatment. First, under the ordinance officials are not limited to holding and treating individuals who have been arrested, and as we have stated, there was no medical reason to assume that the men with Reynolds were less likely to be infected than was she. Moreover, if officials had probable cause to arrest Reynolds for prostitution, and we cannot say on the record whether they did, they had probable cause to arrest the men with whom they found her for soliciting prostitution. The unequal application of prostitution and solicitation laws to women as compared to men cannot justify the unequal application of hold and treat laws to women over men. In short, there is no basis on the record other than outdated stereotypical attitudes that treat women, but not men, who have illicit sexual relations as harbingers of disease for Denver’s discriminatory application of its hold and treat law. Such attitudes violate the Equal Protection Clause’s prohibition against arbitrary and invidious treatment. Reynolds bases her equal protection claim on the charge that the appellees treated her differently than the men she was with at the time of her arrests. As stated above, we find that appellees violated the Equal Protection Clause in so doing. For this reason, we need not consider whether appellees have engaged in a broader pattern of discrimination against women. We note, however, that our review of the case law suggests that hold and treat laws have historically been applied far more frequently against women than against men, or at least, that far more women than men have brought cases challenging their treatment or detention pursuant to such laws. Among the many state court decisions reviewing hold and treat orders, we have been able to find only a few in which the orders were applied to a man. For example, City of Little Rock v. Smith, 163 S.W.2d 705 (1942); Ex parte Dillon, 186 P. 170 (Cal. App. 1919); Hill v. Hilbert, 222 P.2d 166 (Okla. Crim. 1950); State ex rel. McBride v. Superior Court, 174 P. 973 (Wash. 1918); Ex parte McGee, 185 P. 14 (Kans. 1919). Cases relating to women who were suspected of prostitution or “immoral” conduct include Ex parte Martin, 188 P.2d 287 (Cal. App. 1948); Ex parte Clemente, 215 P. 698 (Cal. App. 1923) (per curiam); Ex parte Dayton, 199 P. 548 (Cal. App. 1921) (per curiam); Ex parte Arata, 198 P. 814 (Cal. App. 1921); Ex parte Johnston, 180 P. 644 (Cal. App. 1919); Varholy v. Sweat, 15 So.2d 267 (Fla. 1943); People ex rel. Baker v. Strautz, 54 N.E.2d 441 (Ill. 1944); Welch v. Shepard, 196 P.2d 235 (Kans. 1948); Ex parte Irby, 215 P. 449 (Kan. 1923); Ex parte Company, 139 N.E. 204 (Ohio 1922); Ex parte Fowler, 184 P.2d 814 (Okla. 1947)). Although not indicative of the appellees’ discriminatory application of Sec. 735, the paucity of case law from other jurisdictions concerning men who have been subject to hold and treat laws suggests that the women have been disproportionately targeted by such laws.

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iv Appellant contends that appellees violated her Fourth Amendment rights by failing to obtain a warrant before requiring her to submit to a medical examination or remain in detention. We agree. The Fourth Amendment provides that “[t]he right of the people to be secure in their persons, house, papers and effects, against unreasonable searches and seizures shall not be violated, and no Warrants shall issue, but upon probable cause.” U.S. Const. amend. IV. As the Supreme Court has explained, this right “safeguard[s] the privacy and security of individuals against arbitrary invasions by governmental officials.” Camara v. Mun. Ct., 387 U.S. 523, 528 (1967). The Amendment’s protections apply to the states through the Fourteenth Amendment. Id.; Wolf v. Colorado, 388 U.S. 25 (1948). In this case, appellees do not deny that Sec. 735 authorizes officials to compel a medical examination and that on multiple occasions they ordered Reynolds to submit to a blood test as well as more intrusive examinations (such as taking swabs from her cervix) without obtaining a warrant. Nor do appellees deny that such examinations are searches within the meaning of the Fourth Amendment. There is also little doubt that the search was compulsory even though Reynolds had the “choice” to accept an examination and possible treatment, or indefinite confinement. Sec. 735.1-13 states unequivocally that persons “detained in jail . . . shall be examined.” A “choice” made under threat of indefinite detention is coercive. See Stringer v. Dilger, 313 F.2d 536 (10th Cir. 1963). Appellees based their defense on the claim that “normal” legal requirements, including the Fourth Amendment’s warrant requirement, do not apply when the state acts to protect the public’s health and safety. We agree that states enjoy wide latitude in acting to protect the public from communicable diseases. Jacobson v. Massachusetts, 197 U.S. 11 (1905); Compaigne Francaise de Navigation a Vapeur v. La. State Bd. of Health, 186 U.S. 380 (1902). That does not mean, however, that there is a blanket public health exception to the Fourth Amendment’s warrant requirement. To the contrary, in Camara v. Municipal Court of the City & County of San Francisco, the Supreme Court ruled that routine administrative health and safety searches of property require a warrant. 387 U.S. at 534. We see little reason to believe that medical examinations of an individual’s person, especially intrusive examinations of an individual’s genitalia, are any less worthy of Fourth Amendment protection than public health searches of property. None of the cases that the appellees rely upon suggest otherwise. Neither Jacobson nor Compagnie discussed either searches or warrants, and both

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predate the Supreme Court’s ruling in Wolf v. Colorado applying the Fourth Amendment to the states. 388 U.S. 25 (1948). Likewise, the lower court cases that appellees cite predate Wolf and do not consider the Fourth Amendment’s warrant requirement. For example, although Ex parte Arata ruled that the state could hold someone who had committed acts of prostitution, the court stated that “Where a person so restrained of his or her liberty questions the power of the health authorities to impose such restraint, the burden is immediately upon the latter to justify by showing facts in support of the order . . . a mere suspicion, unsupported by facts giving rise to reasonable or probable cause, will afford no justification at all for depriving persons of their liberty, and subjecting them to virtual imprisonment under a purported order of quarantine.” 198 P. at 816. Likewise, while upholding Oklahoma’s hold and treat law as it applied to individuals arrested for prostitution, the court in Ex parte Fowler approved of the Arata court’s language and cautioned that the statute should not be used “as a cloak to give unwarranted and additional punishment to persons on the ground that [officials] suspected that they are infected with a venereal disease.” 184 P.2d at 820. In addition, although Ex parte Gilbert, 135 S.W.2d 718 (Tex. Crim. App. 1940), affirmed the state’s power to detain someone who officials believe has a contagious disease, the court cited Ex parte Degener, 17 S.W. 1111 (Tex. App. 1891), for the proposition that an individual was entitled to a habeas hearing to contest the fact that he or she has the disease. In short, even though they predate the application of the Fourth Amendment to the states, most of the cases cited by the appellees recognize the need for some judicial oversight of hold and treat laws. To be sure, the Supreme Court has long accepted that individual rights may have to give way to the public good during a public health emergency. Jacobson, 197 U.S. at 27–29. In Camara, the Supreme Court accepted that warrantless searches might be justifiable in “an emergency.” 387 U.S. at 539. The Supreme Court more fully explained that exception and the factors permitting a warrantless search in Schmerber v. California, 384 U.S. 757 (1966). In that case, the Court affirmed a conviction for driving under the influence of intoxicating liquor that was based on evidence obtained from a blood test, taken without a warrant, while the petitioner was in hospital. In rejecting the defendant’s Fourth Amendment claim, the Court emphasized that two conditions were required to support a warrantless intrusion into the petitioner’s body. First, there has to be probable cause for the arrest. Second, there has to be an “emergency, in which the delay necessary to obtain a warrant, under the circumstances, ‘threatened the destruction of evidence.’” See 384 U.S. at 770–771, quoting Preston v. United States, 376 U.S. 364, 367.

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For the reasons we discuss below, neither condition applies to the medical examinations authorized by Sec. 735. A Sec. 735 does not require that officials have probable cause to believe that individuals subjected to a warrantless examination either have a venereal disease or are about to transmit it to others. To the contrary, the ordinance effectively creates an irrebuttable presumption that any person who is “arrested and charged” with vagrancy, prostitution, rape or another sexual offense, or anyone who is “reasonably suspected to have had a contact with another individual reasonably believed to have had a communicable venereal disease” or has had a venereal disease within twelve months and will transmit it to others. These sweeping, and unsupported presumptions, which appear to permit the appellees to hold and treat individuals even if, as in the instant case, charges are later dropped, do not satisfy the Fourth Amendment’s requirement that probable cause be based on an individualized review. See United States v. White, 401 U.S 745, 761 (1971) (Douglas, J., dissenting) (quoting Camara, 387 U.S. at 533). In response to Reynolds’ Fourth Amendment claims, appellees cite Jacobson for the proposition that in a case relating to infectious diseases, courts must defer to the legislature’s determination that probable cause exists for a particular class. We agree that Jacobson commands courts to give the legislature wide berth in choosing the means to combat a public health emergency. But as we have stated above, Jacobson did not discuss the Fourth Amendment or probable cause. Nor does it permit the legislature, without evidence, to simply presume that anyone suspected of prostitution or vagrancy, or any other offense, has a venereal disease. To the contrary, the Court in Jacobson took pains to note that the safety and efficacy of vaccination was well-established and that the outcome might be different if the law was unreasonable, arbitrary, or oppressive. 197 U.S. at 28–38. Nor does Compagnie Francaise de Navigation a Vapeur v. Louisiana State Board of Health, 186 U.S. at 380, support the appellees’ position. In that case the Supreme Court upheld a quarantine that barred healthy immigrants from entering areas in which outbreaks were occurring. The Court concluded that the law did not violate the Commerce Clause, federal immigration laws, international treaties or the Fourteenth Amendment. The Court did not consider the Fourth Amendment nor did it discuss whether the state law made any presumptions about the health status of any classes. Indeed, the quarantine applied to individuals who were presumed to be healthy.

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In the instant case, the need for probable cause would not dissipate even if we were to accept that it was reasonable for the legislature to conclude that the classes identified in Sec. 375 have higher rates of gonorrhea than do other classes. Even if certain classes are twice or three times as likely as the average citizen to have a disease, it would not follow that that there was probable cause to believe that any individual within the class had the disease. For example, even if 30 percent of people in the targeted classes have a venereal disease, a rate that is surely far higher than the rate in the general population, the overwhelming majority of class members – 70 percent – would be disease-free. Further, even if this court found that the legislature could conclude that there was probable cause to determine that anyone who has been convicted of prostitution, vagrancy or a related sex crime has a venereal disease, a conclusion for which we have seen no medical evidence, Sec. 735 includes no such requirement. Instead Sec. 735 authorizes a compulsory examination of all individuals, such as the appellant, who have been arrested and charged but not convicted of prostitution. Thus, a mandatory examination can take place without a warrant or any showing before a judge simply because a police or health official charges the individual with prostitution, even though charges may be later dropped, including, presumably, for insufficient probable cause. This power to forcibly examine someone for a disease simply because an official suspects that she is in the selected class lacks any basis in law. As the California Court of Appeals noted in Ex parte Arata, the mere fact that a woman has been suspected of prostitution is insufficient to establish probable cause that she is infected with a venereal disease. 198 P. 814 (1921). Nor can a state presume that an individual has a venereal disease simply because officers believe that he or she has engaged in illicit sexual intercourse – never mind because she is at a hotel with a man to whom she is not married. See, for example, Ex parte Dillon, 186 P. 170 (Cal. App. 1919); Hill v. Hillbert, 222 P.2d 169 (Okla. Crim. App. 1950); Huffman v. District of Columbia, 39 A.2d 558 (D.C. 1944). Such a presumption is, in the words of the California Court of Appeals, “shocking to our sense of justice.” Ex parte Dillon, 186 P. at 172. There are many other ways in which Sec. 735 authorizes examinations without the probable cause required by the Fourth Amendment. For example, the section permits a forced examination of anyone who had a venereal disease within the past twelve months, even if the individual has been successfully treated, and there is no other reason to believe that he or she has again been exposed to a venereal disease. The ordinance thus assumes that once someone has had a venereal disease, he or she is always highly susceptible to a repeat infection. No evidence is given for this unproven assumption that stigmatizes people simply for having once contracted a disease.

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Likewise, Sec. 735 applies to individuals who are charged with vagrancy, even if they have not been charged with, never mind convicted, of any sexual offense. The ordinance also permits mandatory examinations of individuals who have had “contact” with others who have a venereal disease, without clarifying that the contact at issue must be the type that can spread the disease. Read literally, the ordinance permits the forced examination of anyone, including family members, casual friends, or even the lawyers and physicians of someone who once had a venereal disease. Given that venereal diseases are not casually transmitted, this provision seems to serve little purpose other than to encourage the stigmatization and ostracism of individuals who have contracted a venereal disease. In concluding that Sec. 375 violates the Fourth Amendment’s probable cause requirement, we recognize that some courts have upheld hold and treat laws by saying that the fact that a woman was a prostitute made it “reasonably probable” that she was infected with a venereal disease. For example, Ex parte Martin, 83 Cal. App. 2d. 164 (1948); Ex parte Arata, 198 P. at 816. But see In re Shephard, 195 P. 1077 (Cal. App. 1921) (holding that evidence that a woman had sexual relations for pay provided insufficient reason to conclude that she had a disease). As we discussed above, such conclusions were reached in cases that did not consider the Fourth Amendment and were grounded more in social prejudice than epidemiology. They are antithetical to the Fourth Amendment’s requirement for individualized determinations. See Camara, 387 U.S. at 533. If the appellees are correct that the legislature can, without any evidence, designate probable cause to believe that any class has a communicable disease, the legislature could readily decide that there is probable cause to believe that lawyers have tuberculosis, or that all shopkeepers have typhoid. We are confident that the legislature cannot do this, and that probable cause for Fourth Amendment purposes must depend upon particularized findings, rather than class designations. In holding that Sec. 735 permits searches in the absence of probable cause, we are not disclaiming the possibility that with additional facts a judge might have found that the appellees had probable cause to examine Reynolds. Nevertheless, we underscore that probable cause requires a particularized finding, id., and it must be founded on evidence, not archaic prejudices that simply assume that women who visit hotels or engage in sexual relations are the sources of infection. Given the record before us, we are doubtful that probable cause could have been established in the instant case. As we have explained, Reynolds’ diagnosis and successful treatment of venereal disease in 1971 would not have established probable cause for her being infected in 1972. Nor would the fact that

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officials suspected her of being a prostitute. See In re Shephard, 195 P. at 1077. We also stress that the fact that Reynolds was in a hotel with a man who was not her husband cannot by itself establish probable cause to believe she was infected. Women can be in hotels with men who are not their husbands for many reasons that are not sexual in nature. Even if the appellant intended sexual relations (as she admitted at trial that she did), that did not provide officers at the time of arrest with a basis for assuming that she was infected with a communicable disease. Ex parte Dillon, 186 P. at 172. In short, the appellees would have needed to present more particularized evidence, grounded in science, to establish probable cause to believe that Reynolds was likely to transmit a venereal disease. Because Sec. 735 does not require such a showing, and the appellees did not provide it in the instant case, the warrantless, forced search of Reynolds was unconstitutional. B Even if probable cause existed, Sec. 725 violates the Fourth Amendment because it authorizes warrantless searches in the absence of an emergency. Such an emergency can exist where the item that has been searched for and possibly seized creates an immediate danger to the public. See, for example, N. Am. Cold Storage Co. v. Chicago, 211 U.S. 306 (1908) (holding that the seizure of unwholesome food does not violate the Fourteenth Amendment). An emergency can also exist if there is a risk that the evidence would be destroyed if the time was taken to obtain a warrant. Thus, recently in Cupp v. Murphy, the Supreme Court upheld a warrantless search of the defendant’s person because the evidence at issue, fingernail scrapings, could easily be lost while a warrant was obtained. 412 U.S. 291, 296 (1973). Likewise, in Chimel v. California, the Court reaffirmed the constitutionality of warrantless searches incidental to an arrest to remove weapons on the suspect’s person, or to preserve evidence that the suspect might be able to destroy. 395 U.S. 752, 762–763 (1969). The Court in Chimel, however, held that an arrest, on its own, does not justify a broad warrantless search of a defendant’s property. Id. at 763. These cases establish that the state can dispense with obtaining a warrant if, but only if, there is either an immediate risk to public safety, as may occur if unwholesome food is about to be sold, or if evidence can be destroyed before a warrant is issued and executed. None of these conditions are required for the warrantless searches authorized by Sec. 735. Venereal diseases are no doubt serious threats to the public health. However, unlike smallpox, at issue in Jacobson, they are not casually

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transmitted, reducing the need for an immediate response. Moreover, by authorizing officials to issue “walk-in” orders that require individuals to show up for testing at some later date, Sec. 735 seems to accept that the risk of undiagnosed venereal disease does not present the type of exigency that demands immediate action. If testing can be postponed until a later date, officials have time to get a warrant. Sec. 735 also permits forced examinations when individuals are detained. Here, too, it is difficult to see an emergency. Precisely because venereal diseases are not casually transmitted, there is little to no risk that an individual under arrest will transmit the disease to a police or health officer, or to other inmates, during the short time it takes to get a warrant. Nor is there any danger that the evidence of infection will disappear or be destroyed during the time taken to get a warrant. Indeed, the only way that an individual could destroy evidence of infection would be by accepting treatment, an outcome that Sec. 735 seeks to encourage. In short, even if we accept that the appellees had probable cause to detain Reynolds on charges of prostitution, there was no exigency justifying warrantless and intrusive medical examinations.

v In June 1972, the appellees gave Reynolds the option of remaining in detention, submitting to an examination, or accepting treatment for an infection for which she had not been diagnosed. For the reasons set forth below, we hold that by effectively coercing her to accept treatment without either her consent or a diagnosis, the appellees violated the right to privacy that is protected by the Due Process Clause of the Fourteenth Amendment. This right, which is related to but distinct from the protections for privacy guaranteed by the Fourth Amendment, Griswold v. Connecticut, recognizes that individuals have a constitutional right to determine what happens to their own body. 381 U.S. 479, 484–485 (1964). In Union Pacific Railroad Co. v. Botsford, the Supreme Court stated that “[n]o right is more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person,” 141 U.S. 250, 251 (1891). A few years later, the New York Court of Appeals, in an opinion authored by Justice Benjamin Cardozo, stated “[e]very human being of adult years and sound mind has a right to determine what shall be done with his own body.” Schloendorff v. Soc’y of N.Y. Hosps., 211 N.Y. 125, 129 (Ct. App. 1914). This is discussed in detail in Chapter 2. In the context of medical care, these principles are enshrined in the common law doctrine of informed consent. Id. at 130; see also Canterbury

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v. Spence, 464 F.2d 772 (D.C. Cir. 1972); Cobbs v. Grant, 502 P.2d 1, 9 (1972). As the Supreme Court of California recently explained, “a person of adult years and in sound mind has the right, in exercise of control over his own body, to determine whether or not to submit to lawful medical treatment.” Cobbs, 502 P.2d at 9. To effectuate this, physicians must provide patients with “all information relevant to a meaningful decisional process.” Id. There is no exception to this requirement for prostitutes, or women who have had illicit sex. The common law doctrine of informed consent is closely aligned with the constitutional right to privacy. In Griswold v. Connecticut, the Court explained that the Constitution protects a right of privacy that includes the right of married individuals to use contraceptives prescribed by their physicians. 381 U.S. 479 (1965). Eisenstadt v. Baird extended that holding to unmarried persons, ruling that a Massachusetts law limiting the distribution of contraceptives to married individuals violated the Equal Protection Clause. 405 U.S. 438 (1972). Importantly, the Court reached that conclusion despite the fact that the state claimed that its law protected health. More recently, in Roe v. Wade, 410 U.S. 113 (1973), and Doe v. Bolton, 410 U.S. 179 (1973), the Supreme Court held that the right of privacy is a fundamental right that encompasses a woman’s choice to have an abortion. In both cases, the Court took great pains to review the medical justifications proffered for the states’ laws and concluded that in light of changing medical knowledge, they could no longer justify the limitations imposed on a woman’s ability to have an abortion. These cases make clear that the fundamental right to privacy protects an individual’s ability to make important decisions relating to his or her health, including his or her sexual health. We see no reason why that right should not include the decision whether to accept or reject antibiotic treatment for venereal disease. That conclusion is not the end of the story. As the Supreme Court reiterated in Roe, “[t]he privacy right involved . . . cannot be said to be absolute.” 410 U.S. at 154 (citing Jacobson v. Massachusetts, 197 U.S. 11 (1905)); Buck v. Bell, 274 U.S. 200 (1927). The right “must be considered against important state interests in regulation.” Roe, 410 U.S. at 154. Without question, the protection of the public from communicable diseases constitutes an important, indeed compelling, state function. As the Court stated in Jacobson, “[u]pon the principle of self-defense, of paramount necessity, a community has the right to protect itself against an epidemic of disease which threatens the safety of its members.” 197 U.S. at 27. It is for this reason that the Court has consistently upheld mandatory vaccination laws.

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See Zucht v. King, 260 U.S. 174 (1922) (upholding school vaccine law); see Prince v. Massachusetts, 321 U.S. 158, 167 (1944) (noting in dicta that a parent’s right to religious freedom does not include the “freedom from compulsory vaccination for the child more than for himself on religious grounds.”). In Jacobson, the Court was able to take judicial notice of vaccination’s importance to public health, as well as vaccination’s relative safety. 197 U.S. at 35. Nevertheless, the Court warned that: an acknowledged power of a local community to protect itself against an epidemic threatening the safety of all, might be exercised in particular circumstances and in reference to particular persons in such an arbitrary, unreasonable manner, or might go so far beyond what was reasonably required for the safety of the public, as to authorize or compel the courts to interfere for the protection of such persons.

Id. at 28. We do not doubt that the state may in certain circumstances require an individual to accept treatment for a communicable disease or remain in isolation. However, as the Court’s discussion in Roe suggests, 410 U.S. 731–732, in order for a treatment order to be reasonable and not arbitrary, the state should have good reason, grounded in medical science, to believe that the treatment will help protect the public’s health. In most circumstances this will require a finding that the individual subjected to the treatment has the disease at issue and is likely to engage in behavior that can transmit the disease. Otherwise the state is subjecting the individual to a treatment – which like all treatments, has risks, however minor – for absolutely no public health benefit. As a federal district court found in Wong Wai v. Williamson, requiring someone to accept a medical intervention (in that case an unproven vaccine for bubonic plague) in the absence of evidence that doing so could protect the public’s health is arbitrary and unreasonable. 103 F. 1 (N.D. Cal. 1900). The facts of the instant case differ significantly from cases in which courts have upheld mandatory treatment. For example, the Court of Appeals for the District of Columbia approved an emergency order for blood transfusions for a patient who refused to accept them due to her religious convictions. Application of President & Dirs. of Geo. Coll., Inc., 331 F.2d 1000 (D.C. Cir. 1964). That case, however, is distinguishable from the instant because there was no question in that case that the transfusions were medically necessary and sought by her physicians. There was also no doubt that the patient did not wish to die, but that her religious beliefs prevented her from agreeing to the transfusion. On those facts, the court concluded that its order did not violate her right to religious liberty.

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Courts have also upheld vaccination requirements. For example, Zucht v. King, 260 U.S. 174 (1922); Jacobson v. Massachusetts, 197 U.S. 11 (1905). Vaccinations that are proven effective, however, differ from the treatment compelled by Sec. 375 in that they are preventive and protect the public’s health by stemming the transmission of an infection within a community. For this reason, courts have concluded it is reasonable to require individuals who are not infected to submit to an effective vaccination. In contrast, the antibiotics given to Reynolds work by stopping an infection that exists. They have no utility if the individual is not infected. To the contrary, misuse of antibiotics can lead to antibiotic resistance, thereby endangering public health by reducing the drugs’ efficacy. Penicillin’s Finder Assays its Future, N.Y. Times 21 (June 26, 1945). In the instant case, Reynolds was ordered to accept treatment for venereal disease in the absence of a diagnosis or examination. That order, which subjected her to the risks of the side effects of the treatment for a disease she might well not have had, has no public health justification and therefore cannot validate the infringement of her rights to privacy and selfdetermination regarding her medical treatment. Whether the State might be justified in requiring her to submit to treatment or remain in indefinite detention, if she had been examined pursuant to a valid warrant and found to have a communicable disease amenable to treatment, we leave for another day. Today, we simply hold that treating a competent adult without her consent for an infectious disease for which she had not been diagnosed violates her right to privacy protected by the Due Process Clause. Because we find that the forced treatment violates Reynolds’ right to privacy, and that the forced medical examinations violate the Fourth Amendment, we have no need to determine if the highly intrusive compelled medical examinations authorized by Sec. 735 violate the Fourteenth Amendment’s Due Process Clause by “shock[ing] the conscience.” Rochin v. California, 342 U.S. 165, 172 (1952). We note, however, that the examinations permitted by Sec. 735, and conducted on Reynolds, were highly intrusive, and did not consist simply of blood tests.

vi For the reasons set forth above, the judgment of the district court is reversed. Judgment to be entered for the Appellant on her Fourth and Fourteenth Amendment claims.

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4 Commentary on Conservatorship of Valerie N. cynthia soohoo & sofia yakren

introduction In Conservatorship of Valerie N.,1 the California Supreme Court was asked to resolve the question of whether, and when, it is appropriate for a guardian to consent to the non-therapeutic sterilization of a woman deemed incompetent to make such a choice for herself. Valerie N. was a twenty-nine-year-old woman with Down’s syndrome. In seeking her sterilization, Valerie N.’s mother and step-father challenged a California statute that prohibited conservators from authorizing the non-therapeutic sterilization of their conservatees. The majority concluded that, by absolutely prohibiting sterilization, California’s statutory scheme violated the privacy and liberty rights of “developmentally disabled persons” under the state and federal constitutions. However, it affirmed the Probate Court’s denial of the parents’ sterilization petition (without prejudice for a renewed petition) because the record failed to establish that “less intrusive means to prevent conception” were unavailable for Valerie N. Reading the 1985 case today, it is important to consider how sterilization fit into the broader context of the struggle for women’s rights and the rights of people with disabilities in the 1980s. While the court recognized the liberty interests at stake in the categorical prohibition on sterilization of conservatees, it simultaneously failed to grapple adequately with the potential for coercion when conservators and the state impose such a decision in a woman’s “best interests,” without consideration of her own desires and capacity to arrive at her own decision with necessary support. The feminist concurring opinion by Professor Doriane Lambelet Coleman, writing as Justice Coleman, does well to value and infer Valerie’s personal 1

707 P.2d 760 (Cal. 1985).

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hierarchy of liberties and, in this way, inches toward a more autonomyaffirming substituted judgment approach than that used in the original opinion. However, like her colleagues and predecessors, Coleman simultaneously posits a “best interests” standard that fundamentally assumes Valerie can play no greater decision-making role than the one defined for her by others. Since 1985, changing attitudes about the sexuality, procreation, and parenting potential of people with disabilities, and an evolving understanding of their legal capacity, have created unique opportunities to reenvision the proper legal response to sterilization decisions involving women with disabilities. An opinion not shackled by the norms of the times would work harder to identify Valerie’s capacities and how they might have been supported to enable her to make her own procreative choices.

background In the 1970s and 1980s, the legal struggle for women’s reproductive rights predominately focused on the experiences of upper-middle class, white, “nondisabled” women who sought to prevent the state from taking away their right to avoid, or end, a pregnancy. This activism challenged criminal laws prohibiting contraception and abortion.2 In addition to reflecting essentialist attitudes about women’s role as child-bearers, these laws can also be understood as attempts to reinforce traditional gender roles and control women’s sexuality. By the time Valerie N. was decided in 1985, the US Supreme Court had recognized in Roe v. Wade3 that the decision about whether to have a child or not is a constitutionally protected privacy right. The original Valerie N. majority decision’s conclusion that the absolute denial of the choice of sterilization violated Valerie N’s privacy and liberty rights reflected growing judicial awareness of the role that reproductive decision-making – including in the context of sterilization – could play in a woman’s ability to define her own life and destiny. However, as discussed below, the majority ignored the threat that abusive sterilization policies posed to women whose procreation was discouraged or devalued, particularly women with disabilities (like Valerie N.), women receiving public assistance, and women of color.

2

3

See, e.g., Eisenstadt v. Baird, 405 U.S. 438 (1972) (extending the right to contraception to single people); Roe v. Wade, 410 U.S. 113 (1973); Griswold v. Connecticut, 381 U.S. 479 (1965) (holding that the constitution protected the right to contraception for married people). 410 U.S. 113 (1973).

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Sterilization Laws Leading up to Valerie N. Throughout US history, states regulated the sexuality of individuals with intellectual disabilities by forcing sterilization, segregating them within institutions by sex,4 and prohibiting marriage.5 Part of a global eugenics movement that began in earnest between 1890 and 1920 and targeted women with intellectual disabilities well into the twentieth century,6 such policies were based on a medical model that viewed intellectual disability as a hereditary, incurable disease that rendered its victims burdensome and immoral.7 Accordingly, state policies aimed to contain the “defective strain” that allegedly gave “rise to feeblemindedness and sexual promiscuity.”8 States coupled ableist stereotypes with a paternalistic intent to “rescue women from becoming victims of men’s lust and their own ‘weakness of self-control’”9 – a theme that underpinned the majority decision in Valerie N., as Justice Grodin supported the efforts of Valerie’s parents to protect her from her own “aggressive sexual advances toward men” through sterilization.10 States were initially cautious about the constitutionality of compulsory sterilization, but the US Supreme Court’s 1927 decision in Buck v. Bell,11 upholding Virginia’s forced sterilization statute, ultimately emboldened over thirty states to adopt similar laws.12 As Coleman recognizes in her feminist judgment, Justice Oliver Wendell Holmes, bolstered by a baseless portrayal of Carrie Buck as a parent unfit due to “feeble mindedness,” infamously justified Buck’s forced sterilization with the conclusion that “[t]hree generations of imbeciles are enough.”13 Tens of thousands of people with mental disabilities were sterilized on similar grounds.14

4

5

6 7 8 9

10 11 12 13 14

In the nineteenth and first half of the twentieth century, individuals with intellectual disabilities were commonly institutionalized. Kristin Booth Glen, Changing Paradigms: Mental Capacity, Legal Capacity, Guardianship, and Beyond, 44 Colum. Hum. Rts. L. Rev. 93, 104 (2012). See Natalie M. Chin, Group Homes as Sex Police and the Role of the Olmstead Integration Mandate, 42 N.Y.U. Rev. L. & Soc. Change 379, 393 (2018). Id. Booth Glen, supra note 4. Paul A. Lombardo, Three Generations, No Imbeciles 5 (2008). James W. Trent, Jr., Inventing the Feeble Mind: A History of Mental Retardation in the United States 103 (1994). Conservatorship of Valerie N., 707 P.2d 760, 763 (Cal. 1985). 274 U.S. 200 (1927). Chin, supra note 5. Buck, 274 U.S. at 207. Booth Glen, supra note 4.

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The US Supreme Court has never directly overturned Buck v. Bell.15 However, by the 1960s and 1970s, most states had repealed their compulsory sterilization laws.16 These statutory reforms were the product of various factors, including scientific challenges to eugenics on the basis of increased understanding of mental illness, widespread association of eugenics with the Nazis, judicial abuse of sterilization practices, and monumental US Supreme Court decisions declaring constitutional protections for reproductive rights.17 Even once compulsory state sterilization for eugenic purposes was no longer acceptable in most states, the government continued to use sterilization as a method to police certain families, prevent illegitimacy and what was perceived as unfit motherhood, decrease the welfare rolls, and control population growth.18 As noted in Bird’s dissent in the original Valerie N. opinion, in 1980 the North Carolina Court of Appeals had upheld an order sought by the state Department of Social Services for the involuntary sterilization of a woman described as “mildly retarded.”19 Notably, the governing statute, which was not repealed until 2003, permitted involuntary sterilization both for eugenic reasons (“the respondent would be likely to procreate a child . . . who would probably have serious mental deficiencies”), and for reasons of parental unfitness (“the respondent because of mental deficiency would probably be unfit to care for a child”).20 The North Carolina court upheld the sterilization order on evidence of parental unfitness, which established “emotional immaturity, the absence of a sense of responsibility, a lack of patience with children, and continuous nightly adventures with boyfriends . . . .”21 Beyond the fact that certain states continued to authorize involuntary sterilization by statute after the 1970s, women who relied on government benefits and health care services faced coercion at the hands of government employees and health care workers who internalized ableist and racist attitudes about their fitness as parents and the desirability of their having 15 16

17

18

19

20 21

Chin, supra note 5, at 394. Michael G. Silver, Eugenics and Compulsory Sterilization Laws: Providing Redress for the Victims of a Shameful Era in United States History, 72 Geo. Wash. L. Rev. 862, 870 (2004). Rima Kundnani, Protecting the Right to Procreate for Mentally Ill Women, 23 S. Cal. Rev. L. & Soc. Just. 59, 64–66 (2013). Alexandra Minna Stern, Sterilized in the Name of Public Health, 95 Am. J. Pub. Health 1128, 1132 (2005); Khiara M. Bridges, White Privilege and White Disadvantage, 105 Va. L. Rev. 449, 472 (2019). Conservatorship of Valerie N., 707 P.2d 760, 783 (Cal. 1985) (citing Matter of Johnson, 263 S.E.2d 805 (N.C. Ct. App. 1980)). Matter of Johnson, 263 S.E.2d at 808. Id. at 809.

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children. In 1975, plaintiffs in California brought Madrigal v. Quilligan,22 a class action against Los Angeles County General Hospital based on the hospital’s practice of pressuring working-class women of Mexican origin into agreeing to sterilization while they gave birth. The women were not properly informed about the nature of the procedure and in some cases did not sign consent forms.23 While the Madrigal case involved Mexican women, similar abuse occurred in Puerto Rican, African American, and indigenous communities with misinformation and coercive practices often tied to the threat of withholding public benefits.24 Because many instances of coerced sterilization were paid for with federal funds, in 1978, the Department of Health and Human Services adopted regulations that prohibited the use of federal funds to sterilize individuals who were adjudicated incompetent or institutionalized. They also promulgated informed consent requirements to prevent coercion and ensure that individuals were adequately informed about the procedure and told that withholding consent would not result in the loss of benefits.25 In 1979, California not only repealed its compulsory sterilization statute, but it also categorically prohibited the non-therapeutic sterilization of conservatees.26 Accordingly, in Valerie N., it was for the California Supreme Court to determine whether Valerie’s parents might sterilize her despite this prohibition and against the backdrop of longstanding sterilization abuses.27 Guardianship Laws Leading up to Valerie N. In addition to restricting procreation, in the late nineteenth and early twentieth century, states created legal processes for adjudicating competence that denied civil rights to individuals with intellectual disabilities.28 When a judge determined that a person was “incompetent” – as a California probate judge declared Valerie N. in 198029 – she lost to a surrogate decision-maker, such as a guardian or conservator, her “legal capacity” to exercise a broad array of 22 23 24

25 26 27 28 29

CV-75-2057-EC (C.D. Cal. June 7, 1978). Stern, supra note 18, at 1134. See Relf v. Weinberger, 372 F. Supp. 1196, 1199 (D.D.C. 1974), vacated by 565 F.2d 722 (D.Cir. 1977) (stating that “an indefinite number of poor people” were threated that their welfare benefits would be withdrawn unless they accepted sterilization); Bridges, supra note 18, at 469. 42 C.F.R. §§ 441.253–254, 441.257–258 (2020). 707 P.2d at 762, 764–767. Id. at 762. Booth Glen, supra note 4, at 105. 707 P.2d at 763.

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rights, including those related to procreation and sexual expression.30 A determination of “incompetence” assumed a medical status of “permanent, unchangeable defect” and gave the surrogate “virtually total control over the [‘incompetent’] person’s life.”31 Moreover, early statutes sometimes imposed a “best interests” standard on the surrogate’s decision-making power; accordingly, the 1969 Uniform Probate Code compared the decision-making power of guardians to that of parents over minor children.32 Former New York Judge Kristin Booth Glen has described confronting this medical, rights-depriving paradigm of guardianship in her courtroom in 1986.33 The same paradigm operated, unquestioned, in the background of the Valerie N. decision, even as it complicated Valerie N.’s access to sterilization. Just a couple of years after the Valerie N. decision, reform efforts had begun to shift capacity assessment toward greater individual autonomy – away from a focus on medical diagnosis, plenary guardianship, and best interests decisionmaking, and toward individual preferences, limited guardianship, and substituted judgment.34 Substituted judgment is thought to promote greater autonomy than a best interests analysis because it requires the guardian to make a “best guess as to what the person under guardianship herself would have chosen under the circumstances.”35

original opinion In Valerie N., the issue before the California Supreme Court was whether the Probate Court properly denied a petition brought by Valerie N.’s mother and step-father, as co-conservators, to sterilize Valerie N. for purposes of “habilitation.”36 According to the court, Valerie, who was twenty-nine years old when the case was decided, had Down’s syndrome and was “severely retarded” with an estimated IQ of 30.37 The Probate Court held that it lacked jurisdiction to grant the petition because section 2356(d) of the Probate Code prohibited conservators from consenting to non-therapeutic sterilization.38

30 31 32 33 34 35 36 37 38

Booth Glen, supra note 4, at 105. Id. Id. at 116. Id. at 105–106. Id. at 109, 115. Id. at 116. Conservatorship of Valerie N., 707 P.2d 760, 762 (Cal. 1985). Id. at 762–773. That section stated that “[n]o ward or conservatee may be sterilized under the provision of this division.” Id. at 762 n.2.

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Writing for the majority, Justice Grodin found section 2356(d) “constitutionally overbroad” because it precluded conservators from choosing sterilization on behalf of the conservatee.39 However, because the factual record was insufficient to support sterilization, the court affirmed denial of the petition without prejudice for a renewed application with additional supporting evidence, and invited the legislature to amend the law and establish criteria and procedural protections for sterilization petitions.40 Three of the justices disagreed that section 2356(d) was unconstitutional, with two justices concurring in the affirmance but dissenting from the court’s analysis, and Chief Justice Bird dissenting.41

Justice Grodin’s Majority Decision The majority decision in Valerie N. emphasized the contemporary struggles of the mainstream women’s rights movement and the formal equality of women with disabilities. Accordingly, the decision stressed that Valerie was entitled to the same rights as other adult women,42 but it failed to recognize societal attitudes toward women with intellectual disabilities that may have influenced the court’s assessment of Valerie’s capabilities and best interests, and legal barriers in the form of guardianship laws that prevented Valerie from actually making her own constitutionally protected choices. Grodin’s majority decision found that the sterilization ban violated the privacy and liberty rights of individuals who are “developmentally disabled.”43 Grodin focused on Valerie’s liberty interest in reproductive choice and the right of women with disabilities to have the same range of choices as others. He described the right at issue as “the right of every citizen to have the personal liberty to develop, whether by education, training, labor, or simply fortuity, to his or her maximum economic, intellectual, and social level.”44 He argued that, by foreclosing the option of sterilization, the state “necessarily limits [Valerie’s] opportunity for habilitation and thereby her freedom to pursue a fulfilling life.”45 In contrast with Bird’s dissent (discussed below), Grodin’s opinion recognized that Valerie had important dignity interests in preserving a full range of 39 40 41 42 43 44 45

Id. at 777. Id. Id. at 778, 781. Id. at 772. Id. at 771–772. Id. at 773. Id.

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choices to enable her to further her personal well-being.46 However, even as the decision focused on abolishing restrictions that limited the range of her reproductive choices, it ignored the other realities in Valerie’s life. In particular, it did not confront stereotypes about the capabilities and desires of women with intellectual disabilities and failed to grapple with guardianship laws that effectively took from her the ability to make autonomous decisions about her body and reproductive capacity.

Failure to Recognize Reproductive Oppression Experienced by Women with Disabilities While Grodin appeared to value Valerie’s aspirations beyond procreation, the majority opinion failed to recognize the unique barriers women with disabilities face in making autonomous reproductive choices. The decision recounted California’s history of forced sterilization in government institutions, but it did not address more recent forms of coercive sterilization experienced by women with disabilities, poor women, and women of color. Further, the decision fell into stereotypical assumptions about pregnancy, parenting and women with disabilities. It did not question the lack of specific evidence to support the conclusions of Valerie’s pediatrician and counselor that pregnancy would impose “psychiatric harm” and “severe psychologically damaging consequences” on Valerie. Grodin also gave short shrift to Valerie’s interest in the potential to become pregnant and bodily autonomy interests in avoiding an irreversible surgical procedure. And in articulating factors courts must consider before authorizing that a woman be sterilized, the majority did not include whether sterilization or the loss of the ability to become pregnant would be traumatic for the individual woman.47 Perhaps most troubling, while arguing that Valerie should have the same range of constitutional choices as non-disabled women, Grodin ignored the fact that, without changes to the guardianship law, Valerie would not be able to exercise these choices. Instead, he accepted that her constitutional right was limited to having decisions made for her,48 rather than inquiring

46

47

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See Norman L. Cantor, The Relationship between Autonomy-Based Rights and Profoundly Mentally Disabled Persons, 13 Annals Health L. 37, 45 (2004) (stating and that “nevercompetent persons have important potential interests . . . in [sterilization] options”). See In re Estate of K.E.J., 887 N.E.2d 704, 719 (Ill. App. Ct. 2008); Matter of Terwilliger, 450 A.2d 1376, 1383–1384 (Pa. Super. Ct. 1982) (considering the possibility of trauma or psychological damage both from pregnancy and birth and from a sterilization operation). Valerie N., 707 P.2d at 771.

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whether enabling conditions or supports might have helped her to realize her rights more independently. The court’s comfort in giving this power to Valerie’s parents sits within a history of laws privileging the judgment and interests of doctors, parents, and spouses over those of women and girls in reproductive decision-making. Prior to Roe v. Wade, women often had to obtain consent from hospital boards before obtaining an abortion, and laws requiring spousal consent for abortion were not held unconstitutional until 1976.49 The Supreme Court has permitted parental consent requirements for minors to obtain an abortion as long as the state provides an alternative judicial consent procedure for minors who are unable or unwilling to obtain parental consent.50

Imposition of an Autonomy-Stripping “Best Interests” Standard Grodin purported to be enlightened about the potential for people with intellectual disabilities to “lead self-sufficient, fulfilling lives, and become loving, competent, and caring marriage partners and parents.”51 However, in discussing Valerie, he did not manage to avoid perpetuating stereotypes about the limitations of individuals (particularly women) with intellectual disabilities. Indeed, he compromised Valerie’s autonomy by presuming her wholesale incapacity, viewing capacity as an all-or-nothing fixed state, and imposing on her a “best interests” standard – all features of the traditional paradigm that underpinned historical efforts to restrict the autonomy of individuals with intellectual disabilities. Valerie was described – as a “victim” of Down’s syndrome, as “severely retarded,” as making “aggressive sexual advances toward men”52 – but she was not consulted or viewed as capable of being consulted. Grodin concluded: “The sad but irrefragable truth, however, is that Valerie is not now nor will she ever be competent to choose between bearing or not bearing children, or among methods of contraception.”53 He appeared to make this determination on the basis of a limited probate hearing record to which Valerie’s counsel made no evidentiary contribution.54

49

50 51 52 53 54

Planned Parenthood v. Danforth, 428 U.S. 52 (1976); Rickie Solinger, Reproductive Politics 13 (Oxford University Press 2013). Belloti v. Baird, 443 U.S. 622 (1979). Valerie N., 707 P.2d at 767. Id. at 762–763. Id. at 771. Id. at 763–764.

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Grodin wrote: after review of a court investigator’s report which stated that Valerie had no comprehension of the proceedings, could not complete an affidavit of voter registration, and gave no pertinent response when asked if she objected to being disqualified from voting, the probate court granted the petition insofar as it sought appointment of appellants as coconservators.55

Based on Valerie’s alleged inability to comprehend court proceedings and the voting process, the court treated her as lacking all capacity, including over her sexual life, even while acknowledging that she had the ability to express certain wishes (e.g., “she has expressed her wish to continue to have her parents care for her”).56 Moreover, to the extent the probate record did reflect on Valerie’s capacity to choose contraception in particular, it included information that Valerie “rejected” birth control pills in her “early teens,”57 suggesting both that she may well have been capable of expressing an opinion about contraception and that her preferences as a woman well into her twenties warranted reexamination. Grodin ruled that Valerie’s conservators should use a “best interests” standard to make profound decisions about Valerie’s life. Assuming that Valerie fully lacked capacity to make decisions about procreation, Grodin asked whether she had a constitutional right “to have these decisions made for her, in this case by her parents as conservators.”58 He implicitly applied a “best interests” standard to her parents’ surrogate decision-making, lamenting that they had the power to choose an abortion for Valerie or to remove a child from Valerie’s custody, but that they did not have the right to choose sterilization – “the one choice that may be best for her.”59 Grodin also explicitly stated that a “conservator is permitted to exercise his or her own judgment as to the best interests of the conservatee” in matters of abortion, contraception (other than sterilization), and the right to bear children.60 In referencing courts that shared the view that sterilization may not be denied to incompetent women “when necessary to their habilitation” and with the proper safeguards,61 Grodin identified a decision in which the Massachusetts Supreme Court chose substituted judgment over a “best

55 56 57 58 59 60 61

Id. at 763. Id. Id. Id. at 771. Id. (emphasis added). Id. at 774 (emphasis added). Id. at 775.

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interests” standard to advance the individual’s personal rights and integrity rather than impose a solution based on external criteria.62 At one point, Grodin even declared that “[t]rue protection of procreative choice can be accomplished only if the state permits the court-supervised substituted judgment of the conservator.”63 However, he did not seem to really mean it. Grodin instructed probate courts to follow the approach in In Matter of Guardianship of Hayes, which he described as using a “best interests” standard to determine whether a conservatee should be sterilized, albeit with some attention to “the view of the incompetent individual.”64 Thus, as far as the majority was concerned, Valerie had no capacity to make any choices about her life. Moreover, her parents were to be allowed to impose on her personhood through a decision-making standard that empowered them to determine what was “best” for Valerie without making a significant, if any, effort to consider what she may have wanted for herself or how they might have figured that out. Making matters worse, the California Supreme Court steered probate courts to handle all similar sterilization applications in this manner.65

Chief Justice Bird’s Dissent Bird’s opinion began with a discussion of the shameful history of involuntary sterilization of “incompetent, developmentally disabled individuals” and recognition that involuntary sterilization continued to occur in the 1980s, though the rationale for sterilization had shifted in the 1970s from eugenics to breaking the cycle of welfare dependency and preventing “unfit” individuals from becoming parents.66 She also recognized that sterilization abuse was not limited to compulsory sterilization initiated by the state and could take other forms such as coerced or third-party consent.67 Recognizing the level of discretion given to Valerie’s guardians and the court, Bird expressed concern that “[t]he majority opinion opens the door to abusive sterilization practices which will serve the convenience of conservators, parents, and service providers rather than incompetent conservatees.”68 Bird would have upheld the sterilization ban based on the state’s compelling interest in protecting Valerie’s ability to procreate. Assuming Valerie’s 62 63 64 65 66 67 68

Id. at 776 (citing Matter of Moe, 432 N.E.2d 712, 720 (Mass. 1982)). Id. at 777. Id. at 775–776 (citing Matter of Guardianship of Hayes, 608 P.2d 635, 640–641 (Wash. 1980)). Id. at 777. Id. at 782–784 (Bird, C.J., dissenting). Id. at 784. Id. at 782.

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wholesale incapacity to make her own reproductive decisions, Bird concluded that “the right to procreate” which is “more primal” with “roots that go deeper than and do not depend upon a capacity for rational choice”69 was paramount to the right to choose sterilization, which Valerie could not exercise on her own behalf. Part of Bird’s dissent can be read as an important recognition of Valerie’s interest in bodily autonomy and the risks of coerced sterilization,70 but in prioritizing procreation over the choice not to procreate, Bird’s reasoning veered dangerously close to an essentialist view of women. She justified the sterilization ban as necessary to protect the “natural function” of procreation, which she appeared to value over other aspects of Valerie’s personhood, stating that procreation “can and often does occur without the exercise of a rational or knowing choice.”71 Further, Bird’s dissent failed to acknowledge that banning sterilization in all circumstances would result in a state-imposed choice for all women with intellectual disabilities. In doing so, she rejected the notion that Valerie may have had a hierarchy of interests that placed other liberties and attainments above the potential to have children. While Bird correctly criticized the majority for assuming that sterilization was required to avoid placing severe restrictions on Valerie, in upholding the ban, she would have permitted the state to decide for Valerie, and for all other “developmentally disabled, incompetent conservatee[s],” that any “unavoidable adverse impact of the sterilization ban on [her] liberty interests [was] insufficient to justify the permanent deprivation of her right to procreate.”72 In her view, the “state ha [d] a compelling interest in protecting the fundamental right of its citizens to bear children,”73 regardless of whether the citizen desired to bear children. And, the procreative capacity of an “incompetent, severely disabled woman” “require[d] even greater protection due to her legally dependent status and limited capacity to defend her own rights.”74

feminist judgment Justice Coleman’s concurrence aptly recognizes that the Valerie N. opinions read like a debate about women’s reproductive capacities played out over 69 70

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Id. at 785. Bird states that the right to procreate has roots that “are constitutional in the physical sense, implicating the individual’s rights to physical integrity and to retention of the biological capabilities with which he or she was born into this world.” Id. at 786. Id. Id. at 787. Id. at 782. Id. at 786.

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Valerie’s body. Justice Coleman critiques the majority and dissent for losing “sight of the particular disabled woman who stands before us.” She exhorts us to “see Valerie herself” and seeks to do so by inquiring into the “details of [Valerie’s] disability and her own hierarchy of liberties.” Unlike the majority and dissenting opinions, Justice Coleman recognizes that Valerie’s liberty interests extend beyond her reproductive capacities and decisions, and include “rights to society or sexual intimacy without regard to procreation, and to physical autonomy, including autonomy regarding medical decisions.” She argues that those liberties may be more important to Valerie than the right to procreation or to reproductive choice. To determine Valerie’s hierarchy of liberties, Justice Coleman seeks to provide us with particulars about Valerie and to inquire into “the capacities and incapacities” that matter most to Valerie. This recognition of human complexity and the nuances of capacity takes a significant step forward from Grodin’s use of the traditional, all-or-nothing capacity paradigm. While accepting that Valerie’s intellectual disability is “most severe” and renders her “childlike” in her ability to communicate, care for herself and understand social boundaries, Coleman finds that Valerie is not childlike in her sexual maturity and “seeks social relations and intimacy.” This recognition and normalization of Valerie’s sexuality is a welcome departure from the majority opinion, which problematizes Valerie’s sexuality as an imposition on others (noting that “behavior modification” therapy was “not successful in eliminating her aggressive sexual advances toward men”)75 rather than recognizing it as part of her identity. Similarly, while Coleman assumes on the record at hand that “for Valerie, preservation of her rights to procreate and to make decisions about reproduction over time is likely as important as the preservation of her right to learn to read the Bible in German,” she does require further evidence that Valerie does not want to bear children before approving sterilization. Coleman’s decision is animated by the value many feminists place on sexual and reproductive self-determination.76 Yet, it is also limited by its unquestioning acceptance of the “best interests” standard. Coleman declares that “decision-makers acting on behalf of those who have always been legal incompetents are bound to take decisions in their incompetent’s best interests.” This rationale is emblematic of the traditional capacity paradigm, and perhaps even logical, but it need not be taken for granted.

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Id. at 763. Mary Ziegler, The (Non-)Right to Sex, 69 U. Miami L. Rev. 631, 642–645 (2015) (describing the history of feminist movements for sexual liberty and their connection to reproductive selfdetermination).

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A common misconception, reflected by Coleman’s concurrence and Bird’s dissent, is that substituted judgment requires looking to a conservatee’s past capacity to determine what she wants once she lacks capacity (such as one might do for a person newly experiencing psychosis) and that substituted judgment is therefore inapplicable to a person with an intellectual disability since birth.77 However, there is more than one way to substitute judgment. In fact, Coleman intuits this by actively working to identify and consider Valerie’s desires on the basis of her actions, in the absence of other forms of expression on the record. Coleman might have therefore legitimately identified her approach to surrogate decision-making as the more autonomy-granting “substituted judgment.” Bird’s assertion that “substituted consent” is but a mere “legal fiction” of procreative choice is true if, like the majority, she uses this term interchangeably with the “best interests” standard.78 If she, instead, refers authentically to the method of surrogate decision-making designed to surmise what the conservatee would want, then her skepticism rests on the stereotype that people with intellectual disabilities do not have their own desires or that those desires cannot possibly be ascertained.

developments after valerie n. Toward Reproductive Justice While grounded in the then-current guardianship paradigms, Coleman’s decision anticipates the Supreme Court’s growing recognition of liberty rights that include intimate decisions about family, relationships, bodily integrity and autonomy. Seven years after Valerie N., the Supreme Court upheld the constitutional right to abortion in Planned Parenthood v. Casey,79 and the Court’s emphasis shifted from the right to privacy to liberty, recognizing that reproductive decision-making implicates personal dignity and autonomy and that rights to bodily autonomy and integrity and to make choices about one’s identity and future “are central to the liberty protected by the Fourteenth Amendment.”80 By recognizing Valerie N.’s liberty interest in sexual intimacy, Coleman’s decision also anticipates the Supreme Court’s inclusion of private sexual intimacy as a protected liberty interest in the 2003 case Lawrence v. Texas.81 77 78 79 80 81

Valerie N., 707 P.2d at 788 (Bird, C.J., dissenting). Id. at 781–782. 505 U.S. 833 (1992). Id. at 851. 539 U.S. 558, 562 (2003) (“Liberty presumes an autonomy of self that includes . . . certain intimate conduct.”).

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In the 1990s, women of color activists began to challenge the mainstream pro-choice movement to adopt a broader framework and recognize the ways that other aspects of women’s identity including race/ethnicity, socioeconomic status, sexual orientation, immigration status and ability/disability combine to impact women’s access to reproductive rights.82 The reproductive justice movement was founded to push the pro-choice movement beyond an exclusive focus on the right not to have a child and to fight for an individual’s right have children and to parent children in a safe and healthy environment.83 A key aspect of reproductive justice is a commitment to recognizing and combating the barriers that women from different communities face in realizing these rights, whether those barriers are legal, structural, societal or cultural. Since the 1990s, reproductive justice has provided an intersectional framework that can help better identify and analyze reproductive oppression faced by people with disabilities. However, stereotypical attitudes about the sexuality and parenting abilities of people with disabilities persist. In a 2012 report, the National Council on Disability found that several states still retained some form of involuntary sterilization laws and that women with disabilities continued to contend with coercive tactics to encourage sterilization or abortion.84 Despite widespread criticism, the Supreme Court has not overruled Buck v. Bell,85 and, as recently as 2001, the Eighth Circuit stated, in Vaughn v. Ruoff,86 that “involuntary sterilization is not always unconstitutional if it is a narrowly tailored means to achieve a compelling governing interest.”87 And as Vaughn v. Ruoff illustrates, women with disabilities continue to be the target of coercive sterilization tactics. In that case, Margaret Vaughn, who was described by the court as “mildly retarded,”88 proved that Missouri child welfare agency workers coerced her to undergo a tubal ligation by falsely telling her that she could regain custody of two children who had been taken by the state if she underwent the procedure.89

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See Sarah London, Reproductive Justice: Developing a Lawyering Model, 13 Berkley J. Afr.Am. L. & Pol’y, 71, 72 (2011). Loretta J. Ross & Rickie Solinger, Reproductive Justice: An Introduction 9 (University of California Press 2017). National Council on Disability, Rocking the Cradle 40–41 (2012). 274 U.S. 200 (1927). 253 F.3d 1124 (8th Cir. 2001). Id. at 1129. Id. at 1127. Id. at 1127–1129.

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Toward Supported Decision-Making and Greater Autonomy In 1987, just two years after the California Supreme Court issued the Valerie N. decision, the Associated Press ran an exposé on adult guardianship, prompting congressional hearings and other reform activities that began to shift capacity assessment from a model in which medical diagnosis was central to one based more on individual function.90 Over the next decade, numerous states comprehensively revised their guardianship statutes,91 and they began to recognize a person with an intellectual disability as a “bundle of capacities, presumptively able to make most decisions, whose ‘wishes, preferences and desires’ are nevertheless to be honored when a guardian exercises power in a domain in which the person has proven incapacity.”92 This newer paradigm used “the least restrictive means of protection,” in the form of limited instead of plenary guardianship, to promote greater autonomy of individuals with intellectual disabilities.93 Changing expectations about how guardians should exercise their decisionmaking powers accompanied the transition from plenary to limited guardianship based on specific incapacities. For instance, the National Guardianship Association (NGA) Standards of Practice adopted in 2002 embraced “substituted judgment,” the primary alternative to decision-making based on a best interests analysis.94 Against the backdrop of the Americans with Disabilities Act95 (ADA) and international human rights law, the newest emerging paradigm “sees incapacity as socially constructed, insists on the full legal capacity of every person with intellectual disabilities, and does away with substituted decision-making in favor of society’s obligation to provide appropriate supports to permit everyone to make his or her own decisions.”96 Enacted in 1990, the ADA explicitly recognized that socially constructed barriers, rather than inherent defects, threatened the integration of people with disabilities into society.97 The international community had already begun the shift from a medical model to a social model of disability as early as the 1970s and 1980s.98 Thus,

90 91 92 93 94 95 96 97 98

Booth Glen, supra note 4, at 109. Id. Id. at 115. Id. at 98. Id. at 116–117. 42 U.S.C. ch. 126 § 12101 et seq. Booth Glen, supra note 4, at 98. Id. at 126. Id. at 132.

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it was perhaps no surprise when, in 2006, the Convention on the Rights of Persons with Disabilities (CRPD) redefined individuals with intellectual disabilities as legal actors with full capacity akin to that of persons without disabilities, and made it the state’s responsibility to support that capacity.99 Although the CRPD has not been ratified by the United States,100 the Third National Guardianship Summit in 2011 recommended that a person under guardianship facing a medical decision must be supported in making her own decision.101 Support can include gathering information relevant to the decision, explaining that information simply, weighing the costs and benefits of the decision, communicating the decision to others, and helping to implement the decision.102 Substituted decision-making should only be employed if supported decision-making is impossible, and best interests may be employed only under extreme circumstances where neither alternative is possible, “for example where there is no information about an unconscious person, or a person in a persistent vegetative state.”103

implications A more revolutionary response to the history of oppression faced by individuals with intellectual disabilities, and the best way to honor Valerie’s personhood, would be to recognize Valerie and those similarly situated as candidates for supported decision-making. In 1985, this would have been a bold move, at best grounded in international law,104 but by today’s evolving domestic standards, it is the only proper first step. Kristin Booth Glen, a former New York judge and advocate for supported decision-making, wrote of her own adjustment to the new paradigm. On the bench as a Surrogate of New York County, Booth Glen was “totally taken aback” when first presented with the notion of supported decision-making.105 She thought advocates were naïve about how severely disabled those facing

99

Id. at 137–138. Id. at 161. 101 Id. at 139. 102 Kristin Booth Glen, What Judges Need to Know about Supported Decision-Making, and Why, 58 Judges’ J. 26, 27 (2019). 103 Booth Glen, supra note 4, at 139 (emphasis in original). 104 For instance, the U.N. General Assembly’s World Programme of Action Concerning Disabled Persons, G.A. Res. 37/52, U.N. GAOR, 37th Sess., Supp. No. 51, U.N. Doc. A/RES/37/52, at 185–186 (Dec. 3, 1982), promoted accessible cultural environments for disabled people. 105 Booth Glen, supra note 4, at 122. 100

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guardianship could be.106 However, with time and experience, she internalized the new paradigm.107 In 2008, Judge Booth Glen appointed a guardian for a young man named Mark based on certifications that he had “profound mental retardation and autism” and testing that placed his receptive communication skills at less than two years old and his expressive skills at three months old.108 Mark was unable to “feed, bathe, or dress himself.”109 When Booth Glen learned that Mark lived in an institution without any support from his trustees, she directed the trustees to hire an experienced care manager for him. The care manager “began to create supports for Mark to express his wishes, to become part of a community and to begin to make – and act on – decisions about his life.”110 Specifically, the manager trained Mark to use a facilitated communication device, scheduled consultations with specialists, purchased computer and outdoor play equipment, and arranged for Mark to go to public places with aides.111 Mark experienced a “near miraculous transformation.”112 He went on to graduate from his special education program and move into transitional supportive group housing, where he cleaned, shopped, cooked, and communicated with his housemates and support staff.113 Mark expressed preferences and acted on those preferences.114 Booth Glen described her own transformation as follows: I notice that I am beginning to “see” Mark, and others like him, in an entirely different light, with “capacities” that were previously invisible. Now, as I conduct guardianship hearings involving young people who have been labeled “severely retarded” and who do not speak – but who, if you watch carefully, are constantly communicating feelings and choices to their trusted family members – I begin to see the spark . . . I wonder how much more fully these apparently “totally incapacitated” young people could live their lives in a society that provided them and their caretakers with the supports necessary for them to enjoy and exercise that full legal capacity . . . .115

106

Id. at 122–123. Id. at 169. 108 Id. at 168. 109 Id. 110 Id. 111 Id. 112 Id. at 169. 113 Id. at 168. 114 Id. at 169. 115 Id. 107

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Coleman accepts that Valerie’s intellectual disability is “most severe,” and that could very well be true. However, such labels could also be the mark of a wholly incomplete narrative – just like the one that stripped Mark of autonomy before he received the proper supports, and that subjected Carrie Buck to forced sterilization. We know little of Valerie’s experiences and opportunities, how they might have limited her capacities, and how additional supports might have expanded her ability to make certain decisions on her own behalf. There will, of course, be people for whom supported decision-making does not work. Nonetheless, presuming capacity and beginning with support is the best way to maximize individual autonomy.

conclusion The history of reproductive injustice in the United States requires us to recognize the ways in which women’s bodies have been used as sites to enforce social norms or implement policy goals, ignoring the individual choices, well-being and lived experiences of women. The ways in which laws and policies have sought to control women’s bodies and sexual behavior have often depended on other aspects of identity. For “undesirable” groups, the state has often sought to prevent or discourage childbearing, reflected in its most base form with the forced sterilization of women with disabilities. Although eugenic ideas have been discredited, ableist stereotypes about the sexuality and parenting ability of women with disabilities persist. But threats to the reproductive autonomy of women with intellectual disabilities go much further than prejudicial attitudes about their sexuality and childbearing, or even coercive sterilization policies, as guardianship laws in many states take away their very legal capacity to make such decisions themselves. This is starting to change. Since the 1990s, capacity has come to be understood as contextual and potentially fluid, such that a person without capacity in one realm may have capacity in another, or may receive training and have experiences that create future capacity. Accordingly, many policymakers and advocates increasingly argue for supported decision-making rather than the surrogate decision-making that characterizes traditional guardianship and the Valerie N. opinions. Today, a truly feminist Valerie N. decision would demand to know more about the nuances of Valerie’s capacities, explore the potential fluidity of any apparent incapacities, and, if necessary, test the possibility of accessing Valerie’s wishes for her own life through supported decision-making rather than a surrogate or best interests analysis.

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CONSERVATORSHIP OF VALERIE N., 707 P.2D 760 (CAL. 1985)

justice doriane lambelet coleman, concurring in the judgment This case raises the issue whether our current statutory scheme is constitutional if its effect is to make it impossible for an incompetent woman lawfully to be sterilized, even in circumstances where the procedure is actually necessary to secure her liberty and her medical best interests. Like my colleagues in the majority, I find that it is unconstitutional. I also base my analysis in the law’s guarantees of liberty and equality. I write separately because it appears to me that they, and the Chief Justice in dissent, have lost sight of the particular disabled woman who stands before us, and the liberties she values and needs us to recognize. Our state’s disgraceful history of eugenic sterilizations, ostensibly on the grounds that they served the public good, is the reason for the prohibition at issue in this case. Because of this, it is understandable that we would consider the rights of individuals to procreate and to make decisions about reproduction. But on the record before us, these are really beside the point. On the record before us, what matters are the rights to sexual intimacy without regard to procreation, and to autonomy in health care decision-making more generally. That we are dealing with a person who is thrice vulnerable by account of her sex, her disability, and the conflicts of interest inherent in conservancy, and that we have managed to get these matters so wrong for important periods of our history, is all the more reason to take special care to get it right now, at least as right as we can.

i the facts Valerie N. is an adult in her late twenties who is “severely retarded as a result of Down’s syndrome.” Conservatorship of Valerie N., 191 Cal. Rptr. 283, 285 (Cal. Ct. App. 1983) (quoting testimony). She has an IQ of 30, which indicates the severest level of intellectual disability. Id. Those aspects of Valerie’s disability that are most relevant here involve her extremely limited capacities for selfsufficiency and communication, her responses to medical or physical examinations, and her demonstrated lack of social and sexual inhibitions. See id. At the hearing on the merits in December 1980, the trial court heard from Valerie’s mother and from three experts, including two physicians and a

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counselor who specializes in “behavior management with developmentally disabled clients.” Id. Their testimony was that Valerie was living at home with her mother and step-father, that she was “unable properly to provide for her personal needs,” and that she required consistent supervision. Br. for Resp’t at 1. Valerie’s “‘social behavior’ was described as ‘not acceptable.’” Conservatorship of Valerie N., 191 Cal. Rptr. at 285. “This is particularly true with regard to men and boys, with whom she is ‘very aggressive’ and ‘very affectionate’ physically. The counselor described this behavior as ‘inappropriate sexual attention to adult males.’” Id. Consistent with evolving social norms and policies concerning the habilitation of the developmentally disabled, Valerie’s mother testified that she wanted Valerie “to be able to broaden her social activities somewhat” but was both “concerned about her safety” and did “not wish her to become pregnant.” Id. Specifically, she “testified that her fear that her daughter may become pregnant as a result of sexual contact with members of the opposite sex has forced her to confine her daughter under strict scrutiny, though she would prefer to allow Valerie the freedom to form natural bonds with other retarded men.” Br. for Pet’r at 7. The witnesses agreed that pregnancy would cause Valerie “psychiatric harm.” Conservatorship of Valerie N., 191 Cal. Rptr. at 285–286. To address this concern, Valerie’s mother and step-father had “attempted to have [her] take ‘birth control pills . . . , which she rejected and became ill.’” Id. at 285. Her mother testified that the use of contraceptive devices was not feasible because Valerie “would not know how to apply them,” that she did not believe that IUDs were “medically safe,” and that in any event “there was ‘no possibility for an IUD at this time’ because [Valerie] ‘won’t cooperate’ in having a pelvic exam performed.” Id. In her mother’s view, this left only the option of tubal ligation as an effective way to secure Valerie’s physical and mental welfare. Id.

ii analysis A In its 1923 decision in Meyer v. Nebraska, the US Supreme Court explained in relation to the meaning of the word “liberty” in the Fourteenth Amendment: While this court has not attempted to define with exactness the liberty thus guaranteed, the term has received much consideration and some of the included things have been definitively stated. Without doubt, it denotes not merely freedom from bodily restraint but also the right of the individual to

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contract, to engage in any of the common occupations of life, to acquire useful knowledge, to marry, establish a home and bring up children, to worship God according to the dictates of his own conscience, and generally to enjoy those privileges long recognized at common law as essential to the orderly pursuit of happiness by free men.

262 U.S. 390, 399 (1923) (concluding a state statutory scheme that prohibits the teaching of the German language to younger children in a private Catholic school’s Bible class violates the teacher’s liberty interest in pursuing their chosen occupation, the parent’s liberty interest in retaining the teacher to teach their children, and the children’s right to acquire useful knowledge). The partial list of “included things” set out in Meyer focuses on the aspects of liberty that were pertinent to the resolution of the issues raised in that case. Id. Different cases, including some out of our own Court, have added to this list. Together, the cases provide a more complete picture of the set of liberties that are protected in our constitutional system. The opinions of my colleagues focus on two: the rights to procreate and to make decisions about procreation or reproduction. These rights are related to but distinct from the rights “to marry, establish a home and bring up children” set out in Meyer. Indeed, the former may be said to be predicates to the latter, or else to come within the “privileges . . . essential to the . . . pursuit of happiness by free [wo]men.” Other rights pertinent here are similarly related but again distinct: the rights to society or sexual intimacy without regard to procreation, and to physical autonomy, including to autonomy regarding medical decisions. While the latter may not have been “recognized at common law” as part of women’s then carefully-ordered liberties, developments in our equality jurisprudence have assured that they are undoubtedly within our rights today. Thus, well before it decided Meyer, the US Supreme Court announced that [n]o right is held more sacred, or is more carefully guarded . . . than the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law. . . . “The right to one’s person may be said to be a right of complete immunity: to be let alone.”

Union Pac. Ry. Co. v. Botsford, 141 U.S. 250, 251 (1891) (quoting Thomas Cooley, Cooley on Torts 29 (1879)). In 1972, this Court affirmed our state’s commitment to this principle as applied to health care settings, holding that “a person of adult years and in sound mind has the right, in the exercise and

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control over his own body, to determine whether or not to submit to lawful medical treatment.” Cobbs v. Grant, 502 P.2d 1, 9 (1972). See also Schloendorff v. Soc’y of N.Y. Hosp., 1015 N.E. 92, 93 (1914) (“Every human being of adult years and sound mind has a right to determine what shall be done with his own body. . . .”). More recently, the U.S. Supreme Court added that liberty includes a right to privacy regarding “the most intimate of human activities and relationships” and that, among others, minors have a constitutionally protected interest in purchasing contraceptives in connection with those activities and relationships. Carey v. Population Servs. Int’l, 431 U.S. 678, 685 (1977). Minors, of course, are one category of legal incompetents. Shortly thereafter, the Court added that “a child, in common with adults, has a substantial liberty interest in not being confined unnecessarily” including for mental health reasons. Parham v. J.R., 442 U.S. 584, 600 (1979). Our own state’s policy is consistent. See Cal. Welf. & Inst. Code, § 4502(a) (West 1978) (detailing the rights of the disabled to “treatment and habilitation services [to] foster the developmental potential of the person . . . provided with the least restrictive conditions necessary to achieve the purposes of treatment”); Cal. Welf. & Inst. Code, § 4502(f )–(h) (West 1978) (detailing the right of the disabled to “social interaction and participation in community activities . . . to physical exercise and recreational opportunities” and to be “free from . . . isolation”). When it comes to the exercise of these liberties, today all are equal in the eyes of the law, including our disabled citizens. See, e.g., N. L.A. Cty. Reg’l Ctr. v. Jarakian, 148 Cal. Rptr. 296 (Cal. Ct. App. 1978) (holding involuntary commitment of developmentally disabled hospital resident based on his status as a voluntary resident to be a violation of due process rights). If it is not possible because of their disability for them to exercise their rights directly, and substantial equality can be achieved by allowing them to be exercised through their legally-designated proxies, the law requires that we abide by their proxies’ decisions as though they were their own. Most relevant for present purposes, proxies speak for their incompetents in circumstances involving physical and mental health care. Parham, 442 U.S. at 619 (recognizing the state’s ability to appoint a custodial agency to make medical decisions for a minor child); Cal. Prob. Code § 2355(a) (West 1981) (“If the conservatee has been adjudicated to lack the capacity to give informed consent for medical treatment, the conservator has the exclusive authority to give consent.”); see also Foy v. Greenblott, 190 Cal. Rptr. 84, 87 (Cal. Ct. App. 1983) (describing appointment of county as public guardian responsible for consent to medical treatment for incompetent mother).

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Proxy decision-makers, acting on behalf of those who have always been legal incompetents, are bound to take decisions in their incompetent’s best interests, and are subject to supervision by the state to ensure that they do not violate their fiduciary obligations. Parents as proxies are often especially privileged, because “the natural bonds of affection [usually] lead [them] to act in the best interests of their children.” Parham, 442 U.S. at 602. This presumption only formally applies through the period of the child’s minority. But, of course, the bonds themselves defy the law’s arbitrary lines. In preferring continuity of care by parents and siblings of adult incompetents, the law recognizes this truth. See Cal. Prob. Code § 1812(b)(3) (West 1981) (stating that in the absence of a spouse or adult child, preference is given first to parents and then to siblings for appointment as conservator); see also In re Raya, 63 Cal. Rptr. 252, 255 (Cal. Ct. App. 1967) (“A dominant parental right to custody of the child pervades our law.”). The fact that a proxy decision-maker may have conflicts of interest that sometimes cause them to take decisions that are not in their charge’s best interests justifies the state’s supervision of their choices, also under the best interests standard. Guardianship of Brown, 546 P.2d 298, 305 (1976). This check is especially important in circumstances where “the constitutional rights of the child are of such magnitude and the likelihood of parental abuse is so great that the parents’ traditional interests in and responsibility for the upbringing of their child must be subordinated at least to the extent of providing a formal adversary hearing.” Parham, 442 U.S. at 602. Our statutory scheme reflects precisely this vigilance. See Cal. Prob. Code § 2356 (West 1981) (enumerating specific limitations to a conservator’s health care decisionmaking powers). Ultimately, however, [t]hat some parents “may at times be acting against the interests of their children” . . . creates a basis for caution, but is hardly a reason to discard wholesale those pages of human experience that teach that parents generally do act in the child’s best interests. The statist notion that governmental power should supersede parental authority in all cases because some parents abuse and neglect children is repugnant to American tradition.

Id. at 602–603 (citations omitted).

B If we have learned anything from our long and unfortunate history with forced sterilizations, it is that our state, through its officials, failed time and time again carefully to consider the rights and interests of the vulnerable persons who

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were subject to its extraordinary power. Most fundamentally, it failed to see them as fellow human beings deserving of equal protection in the exercise of their individual liberties. In the process, it allowed the politically motivated characterization of entire groups of people as unfit and unworthy based largely on prejudice and on an extraordinary measure of intellectual hubris. The effect was to permit official decision-makers to blur exactly the details that should have mattered to the just resolution of their individual cases. The Carrie Buck we encounter in Oliver Wendell Holmes’ Buck v. Bell is an uncomplicated caricature of the type of woman the eugenicists intended to preclude from procreating: herself “feeble minded . . . the daughter of a feeble minded mother . . . and the mother of an illegitimate feeble minded child.” 274 U.S. 200, 205–207 (1927) (this characterization allowing Holmes to proclaim the Court’s support for forced sterilization on the infamous grounds that “[t]hree generations of imbeciles are enough”). This caricature is nothing like the real person who was Carrie Buck. The real Carrie was neither feebleminded nor otherwise in any way incapable or undeserving of having children or being a mother if this was what she wished to do and be. To the contrary, “[t]hroughout Carrie’s adult life she regularly displayed intelligence and kindness that belied the ‘feeblemindedness’ and ‘immorality’ that were used as an excuse to sterilize her.” See generally Paul A. Lombardo, Three Generations, No Imbeciles: New Light on Buck v. Bell, 60 N.Y.U. L. Rev. 30, 61 (1985). I fear that in their drive to signal both their categorical rejection of this history and their embrace of reproductive freedom for the disabled, my colleagues are guilty of a different but also politically and intellectually driven myopia: Where previously the disabled, incompetent, and otherwise vulnerable were treated as an indistinguishable group of individuals, uniformly undeserving of the rights to bear children and to exercise autonomy in matters of reproduction, today these particular liberties are privileged for them, even if they are actually among the least precious, the least relevant, for the individuals themselves. Justice Holmes saw the Carrie he wanted to see as he built his case for eugenic sterilizations, and my colleagues see the Valerie they want to see as they build their case for procreative liberty and reproductive autonomy for the disabled. Deciding that our statutory scheme as applied to Valerie is unconstitutional because it deprives her of the right to procreate (as the dissent does) or of the right to make decisions about procreation or reproduction (as the majority does) is not to see Valerie herself. It is to lump her together with the broader group of disabled and incompetent citizens without regard to the details of her disability and her own hierarchy of liberties. From what we know from the

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record to date, for Valerie, preservation of her rights to procreate and to make decisions about reproduction over time is likely as important as the preservation of her right to learn to read the Bible in German. For her parents as conservators, it must seem as though we have gone mad. Valerie’s particular disability is intellectual, and it is most severe. It renders her at best childlike in her abilities to communicate, to understand and act on social boundaries, and otherwise to take care of her personal needs. At the same time, she is not childlike in her size, her capacity for movement, or her sexual maturity. This particular combination of traits is complicated for her conservators, of course, but it is also separately complicated for Valerie herself. It means that she instinctively seeks social relations and intimacy; but also that she is especially vulnerable if she manages to achieve them. Indeed, from the record we know that although Valerie is sexually “aggressive” toward men and boys, she “won’t cooperate” with medical examinations and would experience “psychiatric harm” were she to become pregnant. Pregnancy as a medical condition is not inherently harmful, of course. Whether it is or not depends on the individual and their physical and mental health. We have recently recognized that pregnancy can be harmful for adolescent girls, even when they are not intellectually disabled and even when the pregnancy results from sexual relations they may initiate and enjoy. Michael M. v. Superior Ct. of Sonoma Cnty., 601 P.2d 572, 575 (1979), aff’d, 450 U.S. 464 (1981) (noting that unplanned pregnancy in adolescence can result in physical, emotional, and psychological harm that boys do not suffer). This is instructive. The record reflects that Valerie has an IQ of 30, which means that her mental age is and will forever remain far below that of the adolescent girls who were our focus in Michael M. It makes sense in these circumstances that those who know Valerie’s condition best would conclude that pregnancy would cause her psychiatric harm and that they would seek medical options consistent with her mental and physical health care needs. There is nothing in the record that would suggest that Valerie’s mother is not acting in her best interests. To the contrary, her concern that IUDs are not “medically safe” – whether scientifically sound or not – suggests that “the natural bonds of affection” between the two remain strong. That someone like Valerie would be harmed by pregnancy but still enjoy and be permitted to enjoy sexual intimacies also makes sense. Again, the facts matter. The genetic condition that caused her cognitive impairment did not affect her development into a sexual being and it does not affect her endocrine profile. She is functional in some ways and dysfunctional in others. Treating her as though she were dysfunctional across the board would be, again, not to

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see her for who she is. If disability rights are to be meaningful, including for women and girls, they need to be attentive to the capacities and incapacities that matter for the person herself. Of course, Valerie will never be capable of giving legally effective consent to sexual relations. But in this way, she is quite like younger adolescent girls who are also legal incompetents: So long as she at least assents and there is no reason to believe she is being taken advantage of by her partner, if she is also safe, the state has reached the boundaries of its authority to intrude on her privacy. Cf. Carey, 431 U.S. 678 (holding that state statute criminalizing sale of over-the-counter contraceptives to children under sixteen violates First and Fourteenth Amendments). The liberties we know matter to Valerie herself and to her parents as conservators acting on her behalf should be the bases for our decision. From the record, we know that these include the liberty to make medical decisions based on her mental and physical health care needs, and on her expressed preferences for uncomplicated treatment. They also include the liberty to move about freely and to enjoy some measure of society and sexual intimacy. If sterilization should be on the table as one of the medical options toward these combined ends, precluding this possibility is an unconstitutional deprivation of her liberty interests. Because the procedure is not prohibited for competent women with the same basic medical needs and personal preferences, it is also an unconstitutional deprivation of her right to the equal protection of the laws. Albeit severely disabled, Valerie is a woman who with support may be able to enjoy a few of “the privileges . . . essential to the . . . pursuit of happiness.” Meyer, 262 U.S. at 399. Our law should not prevent her proxies from making the health care decisions that are necessary to those ends. I conclude where I began, with the admonition that because we are dealing with a person who is thrice vulnerable by account of her sex, her disability, and the conflicts of interest inherent in conservancy, and that we have managed to get these matters so wrong for important periods of our history, we must take special care to get it right now, at least as right as we can. What this means is that before we authorize Valerie’s conservators to consent to sterilization on her behalf, we must ensure that the record is fully developed on the facts that ought to be dispositive in this case. Thus, I would remand to ensure that (1) the assessment of her IQ and its immutability are correct so that it makes sense to continue to presume that she does not and will never understand or be interested in procreation; (2) there is no other evidence suggesting that she would want to bear children; (3) she is in fact fertile so that it makes sense to consider subjecting her to any intrusive contraceptive procedure; and (4) there are no equally safe and effective means of protecting

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her from an eventual pregnancy so that this most intrusive approach is appropriate. This meticulous review is necessary both to ensure that the procedure is actually in Valerie’s best interests, unclouded by any understandable but inappropriate consideration for her conservators, and so that the state itself is not complicit in the authorization of unwarranted medical procedures of any kind. This is and should be the extent of its compelling interest in Valerie’s health and welfare.

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5 Commentary on Bouvia v. Superior Court joan h. krause

introduction At first blush, Bouvia v. Superior Court1 appears to be an unlikely candidate for a feminist rewrite. The opinion clearly held that that a competent adult – male or female – has the right to refuse life-sustaining medical treatment. Drawing on statutes, case law, and policy statements from legal and medical organizations, the California Court of Appeals articulated a broad right that applied regardless of whether the patient was terminally ill, regardless of the medical intervention, and regardless of how long life might be maintained. In the words of Professor Barry Furrow, the holding of this “landmark court case . . . has since come to be a bedrock principle in patient rights.”2 From the beginning, however, not everyone perceived the decision as a clear victory. Critics charged that the narrow focus on patient autonomy was misguided. Psychiatrists worried that the plaintiff’s desire to refuse nutrition was the result of depression rather than rational choice.3 Philosophers asserted that individual autonomy must yield to a broader duty to preserve life, worrying that granting requests to “participate or assist in taking a life . . . would violate what we, as a civic community, stand for.”4 Some of the strongest criticism came from the disability community, which charged that the opinion relied on inaccurate and prejudicial stereotypes that “epitomize[d] all of the

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225 Cal. Rptr. 297 (Ct. App. 1986). Barry R. Furrow, Death and the Power of the Young Female Body: Iconic Legal Cases, in Embodied Difference: Divergent Bodies in Public Discourse 145 (Jamie A. Thomas & Christina Jackson, eds., 2018). See generally Harold Bursztajn et al., Depression, Self-Love, Time, and the “Right” to Suicide, 8 Gen. Hosp. Psychiatry 91 (1986). Francis I. Kane, Keeping Elizabeth Bouvia Alive for the Public Good, 15 Hastings Ctr. Rep. 5, 8 (1985).

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devaluation and discrimination inflicted on disabled people by society.”5 These voices argued that this decision was not one Ms. Bouvia should be empowered to make. Gender was not a primary target of the initial debate. Cast in a traditional liberal mold, Bouvia was, on its face, a gender-neutral decision supporting the equal rights of male and female patients to reject medical treatment. Where scholars and advocates addressed Ms. Bouvia’s gender, it was often as part of a narrative opposing assisted suicide in general and criticizing doctors and judges for too quickly acceding to women’s requests to die.6 Yet a closer look reveals that the opinion may not have been as gender-neutral as the holding implied. Equal parts complimentary and patronizing, the opinion contains numerous descriptions of Ms. Bouvia’s personal tragedies and her inability to perform the most basic life functions for herself, yet it assures us that she is “alert, bright, [and] sensitive.”7 These factors raise a troubling question: Did the court support Ms. Bouvia’s decision to forego nutrition and hydration because it was her right to do so or because the Justices tacitly shared her view that her life was worthless? In 1986, Elizabeth Bouvia was twenty-eight years old.8 Born with cerebral palsy, she was quadriplegic, with little function in her limbs other than her right hand. Placed in her mother’s custody after her parents’ divorce, at the age of ten she was sent to an institution for children with disabilities. After she turned eighteen, Ms. Bouvia was able to live independently in the community with the assistance of publicly funded aides. She earned an associate’s degree at Riverside City College and a bachelor’s degree in social work at San Diego State University. She then enrolled in a social work master’s program but found that the hospital where she wanted to do her field work could not accommodate her disabilities. In 1982, she married Richard Bouvia, whom she met through correspondence while he was incarcerated; by 1984, they had separated, and she filed for divorce. The appellate court described her condition as follows: 5

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Paul K. Longmore, Elizabeth Bouvia, Assisted Suicide and Social Prejudice, 3 Issues L. & Med. 141, 152 (1987). See, e.g., Susan M. Wolf, Gender, Feminism, and Death: Physician-Assisted Suicide and Euthanasia, in Feminism & Bioethics: Beyond Reproduction 282 (Susan M. Wolf, ed., 1996). Bouvia v. Superior Court, 225 Cal. Rptr. 297, 305 (Ct. App. 1986). Facts are drawn from the opinion, as well as Trial Court Decision in Bouvia I, 1 Issues in L. & Med. 485 (1986); Gregory Pence, Medical Ethics: Accounts of Ground-Breaking Cases 19–20 (8th ed., 2017); Longmore, supra note 5 at 152–159; Lorie Hearn, Elizabeth Bouvia’s Own Story: “It’s More of a Struggle to Live than to Die,” Chi. Trib. (Feb. 8, 1984), at B1.

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Joan H. Krause [Her] physical handicaps of palsy and quadriplegia have progressed to the point where she is completely bedridden . . . . Except for a few fingers of one hand and some slight head and facial movements, she is immobile. She is physically helpless and wholly unable to care for herself. She is totally dependent upon others for all of her needs. These include feeding, washing, cleaning, toileting, turning, and helping her with elimination and other bodily functions. She cannot sit or stand upright in bed or in a wheelchair. She lies flat in bed and must do so the rest of her life. She suffers from degenerative and severely crippling arthritis. She is in continual pain.9

It is worth noting that the accuracy of this description has been questioned. Disability advocates have maintained that cerebral palsy is not progressive; that Ms. Bouvia had never been diagnosed with arthritis; that she was capable of using a motorized wheelchair; and that while living independently, she had only required assistance for a few hours a day.10 All agreed, however, that she was able to eat only with assistance and that her condition left her in constant (although unspecified) pain. Elizabeth Bouvia’s legal saga began in 1983. After the disappointment over her graduate field work, unsuccessful attempts to live with her in-laws and father, and separation from her husband, Ms. Bouvia checked herself into the psychiatric unit at Riverside General Hospital, where she refused to eat solid food and announced her intention to starve herself to death. When the Chief of Psychiatry refused, Ms. Bouvia contacted a lawyer and sought an injunction preventing the hospital from administering health care against her will or forcibly discharging her. Her physicians and her estranged husband opposed the request. On February 8, 1984, Superior Court Judge John Hews denied the injunction. Judge Hews found that Ms. Bouvia was mentally competent to make health care decisions, and he acknowledged that her decision had been made after careful deliberation. Nonetheless, citing the potential liability of the medical and nursing staff as well as the “devastating effect on other patients . . . and other physically handicapped persons who are similarly situated in the nation,” he held that the state was permitted to protect her from suicide.11 While disability activists hailed the decision, bioethicist George Annas characterized the dispute as “a contest of wills and power,” warning that “the match is so one-sided, with the full weight of the medical establishment

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225 Cal. Rptr. at 1136. Longmore, supra note 5, at 157. Trial Court Decision in Bouvia I, supra note 8, at 488, 490.

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and state” against Ms. Bouvia.12 Ms. Bouvia checked herself out of the hospital in April 1984 and went with friends to a Mexican hospital specializing in alternative treatments, where she hoped to carry out her plan. But she soon relocated to a motel; the director of the hospital reportedly informed her that his staff could not watch her die, and she feared the hospital would try to force-feed her. She also realized that she did not want to put her friends in legal jeopardy. It was widely reported that Ms. Bouvia then had a miraculous Easter morning “conversion” in her hotel room, telling observers she wanted to live, taking her first solid food in months (a sweet roll and a glass of wine), and then returning to the hospital.13 But Ms. Bouvia quickly disavowed the report, and, in a bizarre twist, the accuracy of the story was called into question when it was revealed that the reporter had negotiated an exclusive book contract about the case.14 Ms. Bouvia returned to Southern California, where she remained at an undisclosed facility until her pain became unbearable. She was admitted to the University of Southern California Medical Center in September 1985, where she received a liquid diet and morphine to control the pain. She was then transferred to a rehabilitation facility, High Desert Hospital (HDH), where doctors became concerned that her liquid diet was insufficient and inserted a nasogastric tube to provide additional nutrition. Ms. Bouvia sued to force HDH to remove the feeding tube. On February 21, 1986, Superior Court Judge Warren Deering denied the preliminary injunction. While acknowledging that Ms. Bouvia was competent and rational, Judge Deering stated that her refusal was “motivated not by a bona fide exercise of her right to privacy but by a desire to terminate her life,” and he held that she did not have a right to refuse medical treatment if the medical staff believed it would result in a life-threatening condition.15 Ms. Bouvia then filed a petition for a writ of mandamus and other extraordinary relief, which was granted by the appellate court on April 16, 1986.

original opinion Writing for the panel, Associate Justice Beach held that a competent adult has a right to refuse life-sustaining medical treatment, including nutrition and 12

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George J. Annas, When Suicide Prevention Becomes Brutality: The Case of Elizabeth Bouvia, Hastings Ctr. Rep. 20, 46 (1984). Patient Reportedly Calls Off Her Effort to Starve to Death, N.Y. Times (Apr. 24, 1985), at A14. See Jonathan Friendly, Reporter in Paralytic Case Had Book Contract, N.Y. Times (May 4, 1984), www.nytimes.com/1984/05/04/us/reporter-in-paralytic-case-had-book-contract.html. Trial Court Decision in Bouvia II, 1 Issues in L. & Med. 493 (1986).

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hydration: “[t]he right to refuse medical treatment is basic and fundamental [,] . . . protected by both the state and federal constitutions” and supported by relevant case law, the (then-new) California Natural Death Act,16 the Presidential Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, and policy statements from organizations such as the American Hospital Association and the Council on Ethical and Judicial Affairs of the American Medical Association.17 He rejected the trial court’s conclusion that Ms. Bouvia was requesting the state’s assistance in committing suicide rather than exercising her right to refuse medical treatment, noting that “[i]f such a right exists, it matters not what ‘motivates’ its exercise.”18 Moreover, that right could not be outweighed by the state’s interests in preserving life, preventing suicide, protecting innocent third parties, or protecting the medical profession’s ethical standards – not even for patients who received care in a public facility. Nor was Justice Beach swayed by the fact that her condition was not terminal: He criticized the trial court for focusing on the amount of time her life might be sustained without considering her views as to its quality: Here Elizabeth Bouvia’s decision to forego medical treatment or life-support through a mechanical means belongs to her. It is not a medical decision for her physicians to make. Neither is it a legal question whose soundness is to be resolved by lawyers or judges. It is not a conditional right subject to approval by ethics committees or courts of law. It is a moral and philosophical decision that, being a competent adult, is her’s [sic] alone.19

Clarifying that the medical staff would not be subject to civil or criminal liability for honoring such a request, the court issued a peremptory writ commanding the trial court to grant the request to remove her nasogastric tube and prohibiting the physicians and hospital from replacing it without Ms. Bouvia’s consent. On remand, Ms. Bouvia sought an award of fees, which the trial court denied because the litigation had not led to a “significant benefit” as required by the fee statute. She also filed an action seeking damages under the federal Civil Rights Attorney’s Fees Awards Act after the hospital sought to

16 17 18 19

Cal. Health & Safety Code §§ 7185–7195 (West 1977). Bouvia v. Superior Court, 225 Cal. Rptr. 297, 301–304 (Ct. App. 1986) (citations omitted). Id. at 306. Id. at 305. The concurrence appeared to support an even broader right to “assistance from others, including the medical profession, in making death as painless and quick as possible.” Id. at 307 (Compton, J., concurring).

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discontinue her morphine pump.20 On subsequent appeal, the appellate court concluded that the “vindication of the rights at stake in this litigation effectuated important legal principles that potentially impact a large segment of society,” thus entitling her to attorney’s fees, but agreed with the trial court that the defendants had not sought to deprive Ms. Bouvia of her civil rights.21 Gender and Disability Concerns Bouvia adopted an individualistic approach to patient autonomy that was grounded in traditional liberalism: Every competent patient, regardless of gender, medical condition, or financial circumstances, has the right to refuse treatment. Yet a closer look reveals that the analysis may not have been as value-neutral as the holding implies. The opinion describes Ms. Bouvia as “physically helpless and wholly unable to care for herself,” including “feeding, washing, cleaning, toileting, turning . . . elimination and other bodily functions.”22 She “must lie physically helpless subject to the ignominy, embarrassment, humiliation and dehumanizing aspects created by her helplessness,” and she considers it “a dismal prospect to live with” the feeding tube.23 We are explicitly reminded that her husband abandoned her, she suffered a miscarriage, and she was unable to find independent housing with publicly funded assistance. And yet we are assured that she is a college graduate, “intelligent, very mentally competent,” and “perhaps even brave and feisty.”24 The disability community was quick to seize on these descriptions, arguing that the opinion rested not on autonomy but on prejudicial stereotypes about the disabled. The opinion certainly includes language to that effect: “In Elizabeth Bouvia’s view, the quality of her life has been diminished to the point of hopelessness, uselessness, unenjoyability and frustration. She . . . may consider her existence meaningless. She cannot be faulted for so concluding.”25 Critics responded, “Contrary to the highly prejudicial view of the appeals court, what makes life with a major physical disability ignominious, embarrassing, humiliating, and dehumanizing is not the need for extensive physical assistance, but the dehumanizing social contempt toward those who

20 21 22 23 24 25

Bouvia v. County of Los Angeles, 241 Cal. Rptr. 239 (Ct. App. 1987). Id. at 245–246. 225 Cal. Rptr. at 300. Id. at 299, 305. Id. at 300, 305. Id. at 304.

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require such aid.”26 By devaluing the quality of life of those with disabilities and failing to call for the investment of resources needed to integrate them into the community, advocates feared that the court had been too quick to accept Ms. Bouvia’s conclusion that her life was worthless. In the face of such prejudice, they argued that the concept of self-determination was “illusory.”27 The gendered aspects of the discussion received less attention, perhaps because the opinion appeared to be gender-neutral. However, feminist scholars have long noted that end-of-life jurisprudence is gendered. Not only have the majority of publicly reported end-of-life disputes involved women, but judges have been more willing to ignore the wishes of previously competent women, rejecting their remarks as emotional and irrational more often than men and at times infantilizing them by using their first names in court opinions.28 Justice Beach seemingly avoided those traps, referring throughout to “petitioner” or “Elizabeth Bouvia” and repeatedly emphasizing her competency and intelligence. By drawing on the analogous case of Bartling v. Superior Court, which held that a conscious, competent male patient had a right to refuse life-sustaining ventilator treatment even where his condition was not terminal (and where he had a history of depression and anxiety), Justice Beach signaled that the right to refuse treatment applied equally to men and women.29 And yet the relentless recitation of Ms. Bouvia’s struggles raises the disturbing possibility that, rather than supporting her right to decide the quality of her own life, the Justices may have tacitly agreed that the life of a bedridden, destitute, childless woman, whose marriage had failed and whose parents could not care for her – in short, a woman no longer capable of performing the roles traditionally expected of her – was not, in fact, worth living.30 The subtle sexism is illustrated by taking a deeper dive into the court’s comparison to Bartling. Although the court found the patients’ conditions to be similar, Mr. Bartling was a seventy-year-old man suffering from lung cancer and other respiratory illnesses, as well as chronic depression, anxiety, and 26

27 28

29 30

Longmore, supra note 5, at 158. See also Mary Crossley, Ending-Life Decisions: Some Disability Perspectives, 33 Ga. State L. Rev. 893, 910 (2017) (the language “exhibits devaluation, sometimes bordering on disgust, for the material conditions of life with disability”). Longmore, supra note 5, at 168. See Jocelyn Downie & Susan Sherwin, A Feminist Exploration of Issues Around Assisted Death, 15 St. Louis U. Pub. L. Rev. 303, 309–310 (1996); Steven H. Miles & Allison August, Courts, Gender and “The Right to Die,” 18 J.L. Med. & Ethics 85 (1990). 209 Cal. Rptr. 220 (Ct. App. 1984). See Furrow, supra note 2, at 137 (noting cultural views of “the terrible loss of . . . attractive women of endless potential and childbearing age”); Wolf, supra note 6, at 284 (“Physicians may be susceptible to affirming women’s negative self-judgments . . . .”).

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alcoholism. After a biopsy caused a collapsed lung that failed to heal, he was placed on a ventilator and his wrists were restrained to prevent him from pulling out his tubes. The California Court of Appeals upheld his right to disconnect the ventilator, despite the fact that his condition was not terminal.31 In contrast to Bouvia, the opinion contained little description of Mr. Bartling’s “helplessness;” the court merely recited his condition and desire not to be maintained on the ventilator. Mr. Bartling had created a Durable Power of Attorney for Health Care, a declaration stating his wish to be removed from the ventilator, and a living will – the last of which, the court noted, had been signed with an “x” and properly witnessed.32 Ms. Bouvia’s instructions were dictated to her lawyers and also signed with an “x,” yet the court relegated that fact to a footnote, noting that her documents had been signed by “making a feeble ‘x’ on the paper with a pen which she held in her mouth.”33 Where Bartling merely affirmed the patient’s agency, the Bouvia opinion was infused with the condescension and value judgments that have been all too typical of end-of-life decisions involving women.34

feminist judgment Professor Barry Furrow, writing as Justice Furrow, has authored a concurrence that addresses many of the concerns scholars and advocates have expressed about the original opinion, offering a strong rights-based approach that also recognizes that autonomy exists within broader social and relational contexts. While noting her disabilities, the concurrence omits gratuitous details about Ms. Bouvia’s debilitated physical state that appear in the original opinion. Where her “crippling cerebral palsy and arthritis” are mentioned, it is in the context of acknowledging the ways in which they contribute to her physical, financial, and social vulnerability – and yet affirming that, regardless, the choice is Ms. Bouvia’s to make. Although not explicitly a feminist analysis, the concurrence incorporates strands of relational, vulnerability, and communitarian theory. Furrow begins with an important insight, making explicit a concept that underlies many objections to the case: With modern medical advances, death has come to be viewed as something to be feared and avoided at all costs,

31 32 33 34

209 Cal. Rptr. at 220. Id. at 222. Bouvia v. Superior Court, 225 Cal. Rptr. 297, 300 n.2 (Ct. App. 1986). See Miles & August, supra note 28, at 88–89.

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rather than simply as a natural part of life.35 That insight frames his discussion of legal and ethical developments surrounding the right to die. While accepting the original opinion’s summary of then-current case law, statutes, and professional society and ethical statements, the concurrence provides a more coherent framework in which to situate the development of these rights, a framework that also bridges the gap to future end-of-life discussions. Where Justice Beach held that “[p]ersonal dignity is a part of one’s right of privacy,” for example, Furrow anticipates future case law by finding support in the right to liberty as well.36 Although early end-of-life cases relied on an implied constitutional right to privacy, that analysis grew increasingly controversial in the aftermath of Roe v. Wade.37 When the Supreme Court finally addressed the issue, the dispute was framed as one involving the right to liberty rather than privacy.38 By grounding the discussion of autonomy in Ms. Bouvia’s liberty interests, the concurrence foreshadows the post-Cruzan analytical shift. Furrow also offers multiple perspectives on the concept of patient autonomy, which underlies the right to refuse medical treatment. The prevailing individualist notion of autonomy that frames the original opinion is characterized by Furrow as “The Patient in Her Bunker,” isolated and alone.39 While reiterating the patient’s right to control her body, Furrow nonetheless recognizes that this abstract notion of rights, devoid of consideration of individual attributes, resources, and other constraints, is unrealistic. In this, he echoes the views of feminist scholars who have long rejected “the traditional liberal individualistic conception which views the self solely as a rational, selfconscious, socially unencumbered agent,” offering in its place a relational concept that “understands selves to be relationally constructed . . . [and] helps us to appreciate that the various relationships in which a person finds herself all play a role, to varying degrees, in fostering or inhibiting her capacity for autonomous action.”40 Relational autonomy “is a capacity that is developed (and constrained) by social circumstances,” including the internalization of oppressive views such as bias against the disabled.41 While some feminist

35

36 37 38 39

40 41

See, e.g., Leen Van Brussel, A Discourse-Theoretical Approach to Death and Dying, in The Social Construction of Death: Interdisciplinary Perspectives 13, 19–20 (Leen Van Brussel & Nico Carpenter, eds., 2014). 225 Cal. Rptr. at 306. See In re Quinlan, 355 A.2d 647 (N.J. 1976); Roe v. Wade, 410 U.S. 113 (1973). Cruzan ex rel. Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261, 27880 (1990). Anne Sexton, August 17th (1971), reprinted in The Complete Poems of Anne Sexton 603–604 (1981). Downie & Sherwin, supra note 28, at 326. Id. at 327.

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scholars view this as a reason to question the validity of Ms. Bouvia’s views, noting that “arguments for physician-assisted suicide and euthanasia . . . are automatically suspect when they fail to attend to the vulnerability of women and other groups,” Furrow instead focuses on the role of society in creating these circumstances.42 Furrow similarly draws on vulnerability theory, a growing subset of feminist scholarship.43 Theorists argue that vulnerability and dependency, rather than self-sufficiency and independence, are inherent and universal aspects of the human condition. Vulnerability has long been a theme in scholarship opposing assisted suicide for vulnerable groups, particularly the disabled; indeed, it formed the basis for some of the strongest opposition to Bouvia by those who argued that her vulnerability rendered Ms. Bouvia incapable of making a truly free choice.44 In contrast, Furrow understands that autonomy and vulnerability can coexist, and that treating Ms. Bouvia as an autonomous individual (“The Patient as Competent Decision-Maker”) may counter some of the damaging effects of others’ disdain for her disability. This echoes recent feminist scholarship arguing that the proper response to vulnerability is not to resort to paternalist protections – which may have the unintended effect of exacerbating vulnerability and further undermining autonomy – but instead to demand that the state adopt social policies that enhance autonomy.45 The concurrence also recognizes the challenging nature of the doctorpatient relationship under these circumstances (“The Patient as Rebel against Medical Norms”). Ms. Bouvia’s desire to reject the feeding tube while accepting other medical interventions (such as morphine), although clearly her legal right, put her at odds with her medical providers. As Professor Annas described, “Almost from the day she arrived at High Desert Hospital, Elizabeth Bouvia was labeled a problem patient whose will and spirit had to be broken.”46 She challenged her caregivers’ medical judgments, moral beliefs, and even their emotional commitment to nurturing patients – a phenomenon that makes cases involving the cessation of nutrition and

42 43

44 45

46

Wolf, supra note 6, at 305. See, e.g., Vulnerability: New Essays in Ethics and Feminist Philosophy (Catriona Mackenzie et al., eds. 2014); Martha Albertson Fineman, The Vulnerable Subject: Anchoring Equality in the Human Condition, 20 Yale J.L. & Feminism 1 (2008). See Longmore, supra note 5. See Fineman, supra note 43, at 23; see also Downie & Sherwin, supra note 28, at 322 (“Putting further restrictions on the lives of those already limited by oppressive social structures will neither reduce their oppression nor improve their autonomy skills.”). George J. Annas, Elizabeth Bouvia: Whose Space Is This Anyway? 16 Hastings Ctr. Rep. 24, 24 (1986).

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hydration particularly difficult.47 Raising the possibility that her caregivers’ objections may have been tinged with hostility toward Ms. Bouvia herself, the concurrence nevertheless demands that medical providers respect her views as to the quality of her own life – not least because, by establishing a strong basis for trust, both doctor and patient may be able to consider a broader range of treatment options. These strains of analysis coalesce in Furrow’s discussion of “The Patient Trapped in a World of Limits,” which situates these abstract debates within real-life resource constraints. The original opinion barely mentioned the issue, doing little more than noting the “fruitless” efforts to find Ms. Bouvia alternative living arrangements such as an apartment with live-in or visiting nurse assistance. By focusing on Ms. Bouvia’s fundamental right to refuse lifesustaining treatment, the court was able to skirt discussion of the resource limitations that forced her to confront this tragic choice in the first place. Furrow addresses the issue head-on, noting that Ms. Bouvia is “on a lonely island – abandoned by family, lacking community support, without resources such as insurance coverage and lack of access to state facilities and health care personnel,” and recognizing that “at times the urgency in the exercise of this right might be reduced or even obviated . . . if only a better social support system existed through government programs.” The call for increased public resources echoes the core messages of feminist, vulnerability, and communitarian theorists who argue that the fundamental role of government should be to provide the individual and community supports necessary for citizens to flourish and become functional members of society. As Professor Martha Fineman notes, “autonomy is not a naturally occurring characteristic of the human condition, but a product of social policy.”48 For the disabled community in particular, “the tragedy is the failure of social institutions to help people with physical impairments to lead productive lives.”49 Had Furrow’s feminist judgment been a real concurrence, this argument would have resonated strongly with the disability community. Many objections to taking Ms. Bouvia’s wishes at face value stemmed from concerns that she had been denied access to resources that might have enabled her to live a more independent (and perhaps more fulfilling) life. Disability advocates noted that she may have been entitled to more government assistance than 47

48

49

See Lois Shepherd, Terri Schiavo: Unsettling the Settled, 37 Loy. U. Chi. L.J. 297, 326–340 (2006). Fineman, supra note 43, at 23; Downie & Sherwin, supra note 28, at 321 (advocating for “promoting the development of autonomy – competency in all people, especially those who are subject to oppression”). Alicia Ouellette, Disability and the End of Life, 85 Or. L. Rev.123, 133 (2006).

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she received, a long-standing problem in the counties where she lived; moreover, she might have had a case against the hospital that refused to accommodate her field work.50 As Professor Wendy Parmet has noted: The court sought to validate her choice to reject medical care without pausing to consider just how limited and how sorry a choice it was giving her . . . . [I]t did not ask whether the vindication of her autonomous choice as an individual required the choice of living in another, less bleak locale rather than dying where she was. In effect, the court vindicated a particularly thin conception of autonomy, one that views autonomy as requiring simply the absence of governmental interference as opposed to the existence of alternatives.51

By acknowledging the failure to provide adequate resources, even if it lacked the power to remedy the situation, the court might have found at least a modicum of common ground with the disability rights movement and perhaps mitigated some of the backlash against the case.

discussion Bouvia is situated at the confluence of bioethics, disability rights, and feminist theory. All three share a common concern for marginalized individuals and communities that fall outside the majoritarian norm, yet conceptions of who those communities are – and how best to redress inequalities – differ significantly. While Furrow’s concurrence might have helped to bridge some of those differences, it would not have repaired all of the rifts that have developed as a result of these distinct approaches to end-of-life care, particularly as the debate moved from the rejection of lifesaving care into the area of assisted suicide. Both the feminist and bioethics literatures have made clear that end-of-life decision-making is inextricably linked to gender. Some argue that women are overly susceptible to requesting (and receiving) life-ending care, due to reasons that range from inadequate pain relief, poverty, and lack of access to the internalization of stereotypes regarding low self-worth and fear of becoming a burden to others.52 Aspects of Ms. Bouvia’s story, particularly her concern that her decision did not create emotional pain or legal liability for her friends and caregivers, resonate strongly with the feminine ethic of care. 50 51

52

Longmore, supra note 5, at 153–154. Wendy E. Parmet, Terri and Katrina: A Population-Based Perspective on the Constitutional Right to Reject Treatment, 15 Temple Pol. & Civ. Rts. L. Rev. 395, 406 (2006). See, e.g., Wolf, supra note 6, at 283 (noting “the long history of valorizing women’s selfsacrifice”).

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Ms. Bouvia herself told a journalist, “[If] I decided to stop eating, although legally they could do nothing, morally the hospital might feel still not right . . . . I always wanted the people around me to feel OK about it.”53 Yet other scholars argue that these same stereotypes and vulnerabilities may just as easily lead doctors and judges to reject women’s end-of-life wishes, as arguably happened to Ms. Bouvia.54 Disability advocates have raised similar concerns, arguing that the original opinion was based on fundamental and incorrect value judgments about the worthlessness of life with a serious disability. By placing Ms. Bouvia’s decision-making ability at the forefront without suggesting that her life was less valuable, Furrow’s concurrence might have assuaged some of these concerns. The aspect of the concurrence that would have resonated most strongly with both feminist and disability scholars is the emphasis on communitarian obligations to provide the resources and support necessary for every citizen to become as self-sufficient and self-directed as possible. At times that support is financial: Ms. Bouvia certainly would have benefited from more generous funding for housing and personal assistance, which would have offered options other than simply living or dying in a hospital room. At times that support is less tangible: A society that through its policies and ideals truly values the life of every person equally, regardless of age, sex, or disability, would in turn enhance citizens’ ability to develop and exercise autonomy. Yet as Furrow recognized, the court had no ability to order the state to fund other living arrangements for Ms. Bouvia, let alone to adopt general autonomyenhancing policies. Therein lies the crux of the problem. Some scholars argue that, faced with these societal attitudes and constraints, vulnerable populations are incapable of making truly informed life-ending judgments, not because they inherently lack competency but because society has made it nearly impossible for them to accurately assess their own interests and desires. The concurrence rejects that approach, supporting Ms. Bouvia’s right to choose even if her choice must be among options that are second- or third-best. The alternative, as Furrow recognizes, would be to deny agency to such patients on the grounds that they are incapable of making that choice.55 53

54

55

See Catherine Gewertz, Elizabeth Bouvia Still Pondering Death, UPI Arch. (Apr. 16, 1987), www.upi.com/Archives/1987/04/16/Elizabeth-Bouvia-still-pondering-death/4850545544000/. See Jennifer A. Parks, Why Gender Matters to the Euthanasia Debate: On Decisional Capacity and the Rejection of Women’s Death Requests, 30 Hastings Ctr. Rep. 30, 30 (2000). See Catriona Mackenzie et al., Introduction: What Is Vulnerability, and Why Does It Matter for Moral Theory?, in Vulnerability supra note 43, at 1, 9 (describing “pathogenic vulnerabilities”).

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Ms. Bouvia herself created something of a conundrum for both critics and advocates. In every aspect of her life, she confounded expectations. Placed in an institution as a child, she moved out on her own, obtained a college degree, and married, achieving a very different life than many able-bodied observers would have predicted. Yet she refused to become a poster child for the disability community, eschewing their assistance and rejecting their arguments that her choice was socially constructed and ill-informed. She stated, “I am a medical social worker. I know about all those agencies that are supposed to help me,” and “I am fully aware of the resources available to me . . . I chose not to use them.”56 In short, she demanded the right to respond in her own way to her circumstances, even if her options had been shaped by forces beyond her control. Ultimately, that concept of control lies at the heart of the Bouvia litigation. Ms. Bouvia did not in fact end up starving herself to death; although fiercely private, she was reportedly alive as of 2016. She has provided various explanations for her decision, ranging from not wanting to put her caregivers in a difficult position to changes in her physical condition that made starvation more painful than it would have been when the litigation began.57 Some scholars have interpreted her failure to follow through as a cautionary tale, warning that acceding to similar requests will result in the death of many women who simply see no other options.58 Yet Ms. Bouvia clearly stated that she did not want to die; she simply did not want to live in her condition. As one reporter described, “If she physically were capable of taking her life, she says she wouldn’t do it. She would have too much hope in her capacities and in her future to quit living.”59 The courts could not remedy her palsy or take away her pain, nor magically conjure nonexistent resources, but they could grant her the one thing she repeatedly had been denied by her body: control. As she lamented, “I’ve never been free of dependence . . . . Freedom is something I’ll never have.”60 Perhaps not surprisingly, “by giving her control over her life, [the court] gave her a reason 56

57

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59 60

Hearn, supra note 8, at B3; Mary Johnson, Right to Life, Fight to Die: The Elizabeth Bouvia Saga, The Ragged Edge (last visited May 31, 2020), – www.raggededgemagazine.com/ archive/bouvia.htm. Beverly Beyette, The Reluctant Survivor: 9 Years after Helping Her Fight for the Right to Die, Elizabeth Bouvia’s Lawyer and Confidante Killed Himself – Leaving Her Shaken and Living the Life She Dreaded, L.A. Times (Sept. 13, 1992), www.latimes.com/archives/la-xpm-1992-0913-vw-1154-story.html (describing changed circumstances). See, e.g., Wolf, supra note 6, at 286 (describing requests motivated by “a desire not to die but to alter circumstances”). Hearn, supra note 8, at B1. Id. at B3.

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to live.”61 Bouvia, then, may be a debate not so much about the right to die, but rather about the right to live – to live life on our own terms in the world as we find it, however long or short that life may be.

BOUVIA V. SUPERIOR COURT, 225 CAL. RPTR. 297 (CT. APP. 1986)

judge barry furrow concurring in the judgment As modern medicine has gained curative power, we have all come to expect more of doctors. We insist that they get a grip on illness . . . and death. Death as a result has become the enemy instead of the normal for the ill person – trapped in the hospital, requiring explicit medical intervention to stop patient life-sustaining treatment. Medicine has domesticated death, and physicians are trained and feel compelled to take extraordinary measures to hold death back; death is seen as a dangerous entity to be avoided for as long as possible no matter the cost to the patient. Control of the right to die has often been highly contested. The courts provide a proper location for such battles – for good reason. People used to die all the time at home, out of the control and sight of medical institutions. The battle begins when a person enters a health care institution or long-term care facility. Once in the hospital, the patient is often trapped by the tools of medicine – the ventilator, the feeding tube, and the IV drip. When a competent and nonelderly patient wants to stop treatment, even though it will ultimately lead to her death, as in this case, providers often refuse to honor the patient’s wishes. Over the last few decades, the law has been invoked regularly by physicians and other health care providers concerned about the ethical, legal, and medical propriety of discontinuing what is now generally referred to as “lifesustaining treatment.” Patients have fought back. California law has evolved steadily to allow legal protections for patients who wish to terminate care. My colleague Justice Beach has carefully and fully surveyed the landscape of California law – his decision for a unanimous court makes clear that ethical and legal norms allow legal recognition of the rights of patients to refuse medical treatment, even if it means they die as a consequence of their decision. California law, as Justice Beach observes, is clear and consistent as 61

Pence, supra note 8, at 24. See also Ouellette, supra note 49, at 171–172 (noting that “choice is power” and describing similar results in other cases, including people who received prescriptions under the Oregon Death with Dignity Act but chose not to ingest the drugs).

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to the patient’s right to refuse treatment. I am in full agreement with his summary of the California common law, statutory law, and his admirable marshaling of the ethical opinions that are now available from many sources in support of this right to refuse treatment. The law of patient autonomy in medical decision-making has four dimensions relevant to a judicial decision in an individual case such as Elizabeth Bouvia’s. The first dimension is the liberty view of an individual’s right to refuse treatment – without regard to the larger context of that decision. The second dimension considers the agency of the patient within the legal frame of competency, asking courts to decide how much mental capacity is required. The third dimension looks at the patient in a world where gender matters, power is one-sided, and patient resistance begets provider anger. The fourth dimension recognizes that some patients may be vulnerable – as individuals with congenital differences, as members of a community (or not), and as members of the polity – because they lack resources to help them cope with their disabilities and medical conditions. These dimensions raise difficult boundary questions for judges. In this concurring opinion, I elaborate on the underpinnings of patient autonomy in this contested space of vulnerable patients who may be lonely or depressed. To what extent should ethical and legal principles not only acknowledge the centrality of patient decision-making autonomy, but also provide substantial space in judicial decisions to foster that right even in hard cases? And finally, what is the role of the community and the state as to these vulnerable decisionmakers?

i the patient in her bunker American jurisprudence has grounded individuals’ decisions to accept or refuse medical treatment on the bedrock principle of autonomy. Individual autonomy is a notion grounded in the liberty of individuals to make their own decisions about risks in life. Individuals confront a spectrum of decisions in their lives that may increase the risk of dying – from driving a car to swimming in the ocean to hunting to brain surgery. As a society, we allow large spheres of individual liberty to make life decisions that risk harm. In Union Pacific Railway v. Botsford, 141 U.S. 250, 251 (1891), on the issue of whether a court in a civil action could force the plaintiff to submit to a surgical examination in advance of trial, Justice Gray wrote: “No right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person free from all restraint or interference of others, unless by clear and unquestionable authority of law.”

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Medicine presents a very special situation; it confronts individuals who enter the health care system with treatment choices, some of which they may choose to avoid – drugs with high risks, surgeries of questionable value, or painful therapies of modest effectiveness. Others may prolong life but leave the patient trapped in the hospital, connected to breathing tubes, intubation devices, or other equipment. Anne Sexton’s poem “August 17th” captures the loss of autonomy often faced by patients in a hospital, and how it feels to be constrained: Here in the hospital, I say, that is not my body, not my body. I am not here for the doctors to read like a recipe. . . .. Each body is in its bunker. Anne Sexton, “August 17th,” The Complete Poems 25 (1999).

The law has located the patient inside her bunker, alone, legally shielded from unconsented touchings. The tort law of battery has developed firm common law principles to define this bunker of liberty, grounded in autonomy and granting a patient presumptive validity in protecting herself against the invasion of others. This solitary individual in her bunker is at the center of the legal discussion in the case law; she is surrounded by a personal boundary that may be crossed by others only with explicit permission, either given by her or recognized by the courts. As Judge Cooley has written: “The right to one’s person may be said to be a right of complete immunity to be let alone.” Thomas M. Cooley, A Treatise on the Law of Torts or the Wrongs Which Arise Independent of Contract (1879). Others cannot force treatment or other intrusions on a person without strong public justifications: Vaccinations and the military draft in wartime are two rare examples. Jacobson v. Massachusetts, 197 U.S. 11, 24–30 (1905). This view of autonomy creates a libertarian right that effectively creates a right to refuse treatment backed by a judicially enforceable veto. It locates the patient as a featureless entity in a neutral space – a bunker. We do not think beyond a two-dimensional portrayal of an individual and her desires, ignoring the social and political dimensions of her existence. We do not consider the individual’s personal attributes, beyond competence to resist invasions, and we pay little or no attention to social forces, financial limitations, and other external constraints. Elizabeth Bouvia’s control over medical treatment was a power she sought as she confronted the physical limits on her body – caused by cerebral palsy

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and other ailments – and the social constraints of her world of limited resources and inadequate services. She has sought to retain her autonomy to make medical decisions and control over an intrusive medical procedure. Her autonomy means the right to control when medical intervention has become intolerable to her. Autonomy is often about control over the terms and conditions of one’s life, and so it is here. She is stuck in a hospital with a tube down her nose against her wishes. But the law needs to expand beyond the bunker in considering the problems of treating vulnerable patients like Elizabeth Bouvia. Can clinicians be trained to do better in listening to their patients? Can the state do better in providing a range of supports to vulnerable patients such as Elizabeth Bouvia that might eliminate or reduce these difficult medical conflicts?

ii the patient as competent decision-maker A patient with cognitive limitations may have diminished competence to assert her autonomy right. Competence can be a slippery word in the law, with variable meanings. In medical situations, the patient may be in a coma, or medicated beyond the ability to reason, or otherwise unable to express a desire. A patient’s autonomy right, so forceful in its recognition, is tested by a court’s hard look at her competence. Courts ask questions that aim to understand the patient’s cognitive ability to make a decision that manifests awareness of the consequences and provide trustworthy evidence that the patient understands what her decision will mean. This assessment of competency may range from understanding the present and future consequences of her decision in robust detail to the mere evidencing of a decision to accept or reject a treatment, a drug, an IV drip, an intubation to provide food, or a surgery that promises relief. The competency of a decision-maker underpins autonomy rights, from the validity of wills to the ability to stand trial for a crime. It is a standard that a patient must meet in order to assert a full autonomy right to decline treatment. Courts grant patients a presumptive right to refuse treatment, and the burden of proving that they fail to understand the proposed treatment offered to them is high. Being depressed or emotionally distraught is not enough by itself to prove that a patient is incompetent to decide on a treatment. In the Bartling case, Mr. Bartling at the time of his death was seventy years old and suffered from emphysema, chronic respiratory failure, arteriosclerosis, an abdominal aneurysm (abnormal ballooning of the main artery passing through the abdomen to the legs), and a malignant tumor of the lung. Mr. Bartling also had a history of “chronic acute anxiety/depression” and alcoholism. The court noted these

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details but did not find that his medical condition, his depression, or his alcoholism limited his competence to decide to refuse treatment. Bartling v. Superior Court, 209 Cal. Rptr. 220, 220–221 (1984). The law has responded, as the above discussion of California case law and legislation indicates, when competence has clearly diminished or has vanished. California has created legal tools to protect the patient’s pre-competent desires, as Justice Beach has summarized above. Living wills and powers of attorney – these tools create trust in patient desires, all in an effort to help providers decide when a patient’s treatments should stop. These tools recognize that a person’s competence may erode at the end of her life, particularly if she is terminally ill, and they protect her wishes as expressed when she was competent. Courts have to decide whether a patient is competent to assert her autonomy right, and this determination is imbedded in the very notion of an “informed” consent. Does the patient understand what is at stake, what her prognosis is without the treatment? Does she clearly “evidence” a choice? Competency may limit a patient’s right to refuse treatment, but only when the patient fails to understand her decision and cannot clearly evidence her desire to refuse the treatment. Courts also must strive to protect those who are basically “competent” but who struggle to choose between health care options because, for example, they lack confidence, are not sure which option they prefer, have conflicting priorities or anticipate blaming themselves if outcomes are poor. These patients may feel abandoned rather than autonomous if their clinicians refuse to do more than inform them about options and insist that they choose. Respectful conversations between doctor and patient, where doctors engage the patients in their values, may reduce this sense of abandonment. It is indisputable that Elizabeth Bouvia is mentally competent. She is not comatose. She is intelligent and alert, and she well understands the risks involved with withholding artificial nutrition. That is the end of the court’s inquiry. Judge Beach properly noted in his opinion that the trial court below seriously erred by basing its decision on the “motives” behind Elizabeth Bouvia’s decision to exercise her rights. Once Elizabeth Bouvia expresses her wishes, her motivation is irrelevant so long as she remains “competent.” If a right exists, it does not matter what “motivates” its exercise. Nothing in the law suggests that the right to refuse medical treatment may be exercised only if the patient’s motives meet someone else’s approval. Elizabeth Bouvia was placed in a medical environment in which she felt powerless. Her doctors refused to grant her articulate request to stop forcedfeeding, which she found intrusive, and by refusing, they reinforced her sense

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of powerlessness. She was left of her own volition for pain relief. The problem is that powerlessness can easily be destructive of autonomy. Her liberty interest was in possessing a capacity to act and make choices, but this is hard to develop without the feeling or experience of being autonomous. The damaging power of others can destroy a person’s feeling of autonomy and diminish one’s liberty to act. This powerlessness is embedded in the relationships Elizabeth Bouvia faced, as a strong and forceful woman with handicaps, moving through the health care system. Autonomy is both a capacity and a feeling – it is a capacity to make a choice. That choice creates a feeling of voice and power. Powerlessness is destructive of autonomy, since autonomy is a capacity that requires the feeling or experience of being autonomous. This capacity can be destroyed by being subjected to the arbitrary and damaging power of others. But seizing back power, as Elizabeth Bouvia has done, has restored her voice. This feeling of autonomy gives a voice to the disabled or powerless person, particularly in the health care setting. A person’s autonomy cannot be defined by others, but it can be fostered by the grant of autonomy by others. Health care settings, like hospitals, struggle to grant autonomy in the face of physician resistance and professional attitudes toward patient rights. This case is a paradigm of the furthermost boundary of a grant of autonomy: By granting Elizabeth Bouvia the right to refuse the feeding tube, we allow her to gain some control over her life, no longer feeling passive, helpless, dependent, or despairing of any power. A vulnerable patient like Elizabeth Bouvia requires judicial protection from harm, including harm inflicted by furious providers, but also a protective mandate to protect this patient and enable her at all times to have her autonomy fostered. Vulnerability can give away too much of a person’s rights to decide, leading to the acts of paternalism evident in this case by sincere but overbearing health care providers. Promoting an autonomy right in this case extends the capabilities of all patients faced with a decision to refuse medical treatment. As Robert Goodin argues, “Any dependency or vulnerability is arguably created, shaped, or sustained, at least in part, by existing social arrangements. None is wholly natural.” Robert E. Goodin, Protecting the Vulnerable: A Reanalysis of Our Social Responsibilities 191 (1985). What we should expect of a just society is that its social and political structures are responsive to and seek to mitigate the effects of inherent vulnerabilities, ensuring that their burdens do not fall disproportionately on the disadvantaged. Clinicians must be willing to be guided by their patients’ perceptions of need, not by assumptions of similarity and their own beliefs about illness and clinical management.

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Perhaps some, including those within the community of others with severe disabilities may chafe at Elizabeth Bouvia’s choice – for they know that, for many with her limitations, a full life might be possible. Yet granting her wish here reinstates her autonomy and liberates her to control her life. By doing so, it enhances the power of other disabled or powerless patients in future situations.

iii the patient as rebel against medical norms Anne Sexton again describes the alien state of the patient in a hospital: Surely I will be disquieted by the hospital, that body zone — bodies wrapped in elastic bands, bodies cased in wood or used like telephones, bodies crucified up onto their crutches, bodies wearing rubber bags between their legs, bodies vomiting up their juice like detergent. Anne Sexton, “August 17th,” The Complete Poems 25 (1999).

The medical environment and providers often push back hard against patient refusal of treatment. Bouvia’s situation locates her in a medical world of physician-determined standards of care and pressures of providers to treat to protect themselves from feared malpractice liability or criminal prosecution. See for example our decision in Barber v. Superior Court, where two treating physicians were charged with the crimes of murder and conspiracy to commit murder for their actions in discontinuing a patient’s life-support equipment and intravenous tubes. 195 Cal. Rptr. 484 (1983). The California Court of Appeals held that their omission to continue treatment was not an unlawful failure to perform a legal duty. For a variety of reasons, patients, at times, decline what would otherwise be valuable or even lifesaving treatment. In this case, did the staff consider Elizabeth Bouvia’s own wishes and best interests as a patient? Elizabeth Bouvia is an example of a provider-defined “problem” patient, who does not conform to the norms of usual patient behavior, particularly because of her hostility to the situation she found herself trapped in. Strong emotions are generated in providers who must face the powerful resistance of a patient who refuses to eat. Described as a “difficult” patient, Elizabeth Bouvia had retained a lawyer to resist staff attempts to provide care their way. One wonders if their ethical quandary was fueled by hostility toward this particular patient and her attitude.

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Ivan Ilich has written critically of the role of health care providers in such death and dying situations: The chief function of the physician becomes that of an umpire. He is the agent or representative of the social body, with the duty to make sure that everyone plays the game according to the rules. The rules, of course, forbid leaving the game and dying in any fashion that has not been specified by the umpire.

Ivan Illich, Medical Nemesis 207 (1976). When a health care provider is challenged in his or her role, he or she fights for control at the patient’s expense, as Illich describes it. A non-compliant female patient raises the additional issue of gendered provider resistance – Elizabeth Bouvia is certainly not a docile, compliant, disabled woman. The medical profession cannot act on gendered expectations of “normal” behavior, such as passive acceptance of the values of the health care providers. Such clinically imposed norms are often oppressive. Providing nutrition is clearly just another therapeutic intervention, requiring intrusive medical devices – the indications, benefits, and risks of such therapies must be weighed. A patient, such as Elizabeth Bouvia, may well frustrate her caregivers, but their relationship to her must include a strong respect for her perspective as to her quality of life. A responsible provider will see this as a proper expression of patient advocacy and respect for patient autonomy. Good communication that develops trust between the patient and the physician may allow for a wider range of treatment choices in which treatment refusal is only one of several patient choices. The medical environment and providers often push back hard against patient expressions of refusal of treatment. Bouvia’s situation locates her in a medical world of physician-determined standards of care and pressures of providers to treat to protect themselves and their own sense of ethical obligations. And it may well be that patients at times decline what would otherwise be valuable or even lifesaving treatment. But that is their right. Respecting patient autonomy is a concession to the limitations of our knowledge of other people. The principle of respect for autonomy that the court articulates today asks that the court and the hospital try to empathically engage with Elizabeth Bouvia’s experience. Medical staff must try to understand from the patient’s perspective her experience of her illness. Medical education needs to train and support physicians as to how to engage patiently with vulnerable patients; physicians need to be encouraged and trained to try new ways to converse with patients.

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iv the patient trapped in a world of limits Autonomy rights must also be viewed from the perspective of the patient’s world, locating her in real time within the protections and the limitations of her social, economic, and political universe. Her decision may be considered competent by the most demanding tests of sophisticated understanding, but that decision may be located on a lonely island – lacking family and community support, and without resources such as insurance coverage and access to state facilities and health care personnel. My colleague Justice Compton makes a strong point in his concurrence: “Whatever choice Elizabeth Bouvia may ultimately make, I can only hope that her courage, persistence and example will cause our society to deal realistically with the plight of those unfortunate individuals to whom death beckons as a welcome respite from suffering.” But he moves off point when he continues: “If there is ever a time when we ought to be able to get the government off our backs it is when we face death – either by choice or otherwise.” Elizabeth Bouvia and other patients with disabilities raise a related but different question – why doesn’t the government have their backs? Government, as the provider of a social safety net, can offer a better support system for patients like Elizabeth Bouvia. She had made several unsuccessful attempts to find a publicly funded apartment with visiting nurses to provide care before she again ended up as a patient in a public hospital. In 1986, she was transferred to HDH another public facility, where her caregivers inserted a nasogastric tube against her will to avert potential starvation when she could no longer be spoon fed. The support system for those with physical disabilities should be robust enough to support people like Elizabeth Bouvia. Would the availability of such support programs – allowing her to live on her own with assistance, working and interacting with others outside of a health care institution – change her mind? The right to refuse treatment is a legal given at this point in the evolution of the law, as Judge Beach’s masterful discussion of the law – statutory, federal and common law – confirms. But, at times, the urgency in the exercise of this right might be reduced or even obviated in situations like those of Elizabeth Bouvia, if only a better social support system existed through government programs. This autonomy right faces the limits of decision-making for the vulnerable patient such as Elizabeth Bouvia. The vulnerable may lack social support – whether it is religious fellowship; partnership or marriage with a supportive loving partner; or a family or other support community. Elizabeth Bouvia is

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severely limited by her disability, but she appears to have a community of friends that has moved her between health care institutions. She also has the possibility of access to a larger community of those with cerebral palsy-induced limitations, but she has chosen not to engage with that community. What is the scope of judicial “trust” of the decision of a patient whose world lacks supports of so many kinds? Elizabeth Bouvia has physical limitations, but she has not chosen to seek this community. We learn from this world that the disabled do not have to be considered as tragic and suffering. The life of a person with a disability can be a flourishing one, autonomous even though dependent on the support of others. Elizabeth Bouvia knows her own mind and craves her right to act accordingly; she is not to be pitied but to be admired for her strength. It would be a mistake for this court, and the law generally, to see Elizabeth Bouvia’s vulnerability – because of her disability – and her autonomy in opposition. They are not. And extending the capability to be autonomous is a goal that courts should promote, and health care providers should foster. The problem with judicial resolution of a particular case like this is that judicial power is limited. A judge cannot order the state to provide care at its expense for Elizabeth Bouvia in a residential setting outside this hospital; she can only hope that such facilities may be available. She cannot order caregivers to take over the care and manual feeding of Elizabeth Bouvia; she can only hope that resources are available to make such assistance possible. And she cannot order the end to Elizabeth Bouvia’s vulnerability as a disabled person with constant pain and many limitations and arthritis; no medical treatment or medical therapy exists to end her disability. What a court must do in this case is honor Elizabeth Bouvia’s right to assert control over her health care choices, no matter the outcome. The court must acknowledge first that her physical limits and vulnerabilities do not define her and second that her forceful assertion of her decisional autonomy in medical decision-making must be recognized, respected, and admired. The decision of this court today honors Elizabeth Bouvia’s desire to control her destiny, but it is also a beacon that illuminates the need for better support for patients like her, through training of clinicians and through better living support tools for those with severe disabilities.

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6 Commentary on Moore v. Regents of the University of California jessica roberts

background The following rewritten opinion transcends the category of health law. Almost every American lawyer who attended law school after 1990 is familiar with the property law chestnut Moore v. Regents of the University of California.1 For a state supreme court decision, Moore has had significant reach, impacting the laws and norms surrounding biomedical research in the United States for the last three decades. The case is a memorable one, to be sure. When a researcher at the University of California, Los Angeles (UCLA) examined cells taken from John Moore’s spleen (which had been removed to slow down the progression of hairy cell leukemia), he found defective T-lymphocytes with a unique ability to overproduce certain proteins that help regulate the immune system. The cells were highly valuable, and the researcher eventually manipulated them so they could reproduce continuously, establishing a so-called immortal cell line. Moore sued the UCLA researcher, who was also his treating physician, the researcher’s employer, and others for taking his tissue and conducting research on that tissue without his consent. Although he pled thirteen separate causes of action, the California Supreme Court focused on two central claims: (1) lack of informed consent/breach of fiduciary duty and (2) conversion. The court held that he might have stated a cause of action for the former – at least against his own treating physician – but not for the latter. Biomedical research requires access to bodies. At its core, Moore is a case about the rights we enjoy in our physical selves. Specifically, it deals with our ability to deny access to our bodies and our bodies’ by-products by unwanted 1

793 P.2d 479 (1990).

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third parties. It is no coincidence then that Moore described his experience as “a rape,” saying that he was “violated, for dollars.”2 Because this is a case about bodily control, Moore touches on several important feminist values, including objectification, meaningful consent, bodily integrity, privacy, and freedom from both commercial and physical exploitation. It is also worth noting that, although John Moore was a white man, Henrietta Lacks, a Black woman living under Jim Crow, provided the first (and most famous) source of an immortal cell line.3 Since the California Supreme Court’s decision, researchers in high-profile cases have accessed and perhaps exploited the bodies of a number of vulnerable or historically disadvantaged populations, including sick children4 and Native Americans.5 Whether we like it or not, social hierarchies and power dynamics permeate biomedical research. And those disparities in expertise and authority only worsen when a patient’s treating physician is also the person conducting the research. For all these reasons, Moore is ripe for feminist reinterpretation.

original opinion From a historical perspective, Moore seems destined for greatness. The case raised important social and legal questions about participation in and commercialization of biomedical research at a crucial time. Congress passed the Bayh-Dole Act, which allowed academic institutions to patent their inventions while Moore was a patient at UCLA Medical Center. In fact, the University filed the patent at the heart of the case mere weeks after that law took effect. Moore then was a test case for the extent to which contributors of biospecimens could share in those newly available research profits. Moreover, the field of biomedical research was undergoing a revolution. Scientists were just learning how to sequence, map, and amplify DNA, thereby allowing huge leaps forward in molecular and human biology. Without these advances, the research on Moore’s cells would not have been possible, let alone so potentially valuable. John Moore arguably just found himself in the wrong place at the wrong time. After a series of unfortunate events detailed below, in

2 3 4

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Harriet A. Washington, Deadly Monopolies 11 (2011). Rebecca Skloot, The Immortal Life of Henrietta Lacks 15 (2010). Greenberg v. Mia. Child.’s Hosp. Rsch. Inst., Inc., 264 F. Supp. 2d 1064, 1066 (S.D. Fla. 2003); see also Washington, supra note 2, at 193–196. See Tilousi v. Ariz. State Univ., No. 04-CV-1290, 2005 WL 6199562, at *2 (D. Ariz. 3, 2005); Jana Bommersbach, Arizona’s Broken Arrow: Did Arizona State University Genetically Rape the Havasupai Tribe?, Phx. Mag., Nov. 2008, at 134.

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1990 – the very same year that kicked off the Human Genome Project6 – the California Supreme Court decided his case. Majority Opinion In October 1976, Moore went to UCLA Medical Center seeking treatment for hairy cell leukemia. Dr. David Golde, Moore’s treating physician, confirmed the diagnosis and recommended removing Moore’s spleen. Golde told Moore “he had reason to fear for his life, and that the proposed splenectomy operation . . . was necessary to slow down the progress of [Moore’s] disease.”7 At the time he recommended the surgery, Golde was aware that Moore’s cells could have commercial and scientific value. Consequently, Golde and Shirley Quan, a researcher employed at UCLA, arranged to harvest tissue from Moore’s spleen to conduct research unrelated to Moore’s treatment. Moore, unaware of the impending research, consented to the splenectomy. For the next seven years, Moore traveled at his own expense from his home in Seattle to UCLA, based on Golde’s representations that the visits were needed for Moore’s medical care. Each time he returned, Golde took more samples from Moore, including “blood, blood serum, skin, bone marrow aspirate, and sperm.”8 The trips to Los Angeles, however, were not for Moore’s benefit at all. Instead, Golde and Quan were busy conducting research on Moore’s cells, hoping to profit from their exclusive access. During that period, Golde established an immortal cell line from Moore’s tissue (dubbed the “Mo cell line” after Moore himself9), which the University patented. At the time, Golde stated that the research that Moore’s cells made possible could be worth billions.10 Golde and his associates concealed their activities from Moore. Moore was outraged when he discovered the research and its commercialization. He sued five defendants: Golde, the University, Quan, and two biotech companies that had entered into commercial agreements to develop the research on his cells. Although he alleged thirteen different legal claims, the lower courts considered only one cause of action: conversion. Finding that Moore failed to state a valid claim, the trial court dismissed the case. The court of appeals reversed, holding that Moore had stated a cause of action for 6

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Kevin Davies, Cracking the Genome: Inside the Race to Unlock Human DNA 29 (2002). Moore v. Regents of Univ. of Cal., 793 P.2d 479, 481 (Cal. 1990) (omission in original). Id. (citation omitted). Id. at 510. Id. at 482.

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conversion and instructed the trial court to consider Moore’s other claims. The California Supreme Court granted the defendants’ petition for review. Justice Edward A. Panelli wrote for the majority. The court confined its analysis to the claims for breach of fiduciary duty, lack of informed consent, and conversion. With respect to the first two causes of action, the court found that in Moore’s case they were two sides of the same coin.11 According to the court, physicians must disclose any personal interests, “whether research or economic,”12 that could affect their medical judgment and that failure to do so can give rise to a claim for either breach of fiduciary duty or lack of informed consent. The opinion recognized that nothing prohibits doctors from researching in their practice areas. Far from decrying the practice of conducting research on one’s patients, the majority treated the dual role of doctor and researcher as necessary and perhaps even desirable. It explained that “[p]rogress in medicine often depends upon physicians, such as those practicing at the university hospital where Moore received treatment, who conduct research while caring for their patients.”13 Nonetheless, the court acknowledged that, when a physician’s own patient becomes the subject of research, the doctor could have “conflicting loyalties.”14 The California Supreme Court thus decided that Moore had stated a valid cause of action against Golde. Yet, the success of the breach of fiduciary duty and lack of informed consent claims was limited. The court explained that none of the other defendants were physicians. As a result, they neither owed Moore a fiduciary duty nor had any obligation to obtain his informed consent. Because the lower courts had not fully considered whether Quan, the University, or the biotech companies could be secondarily liable for Golde’s torts, the court did not decide those issues.15 It sustained the dismissal of those claims with leave to amend. Moore’s claim for conversion fared even worse. The court noted that Moore was “[i]nvoking a tort theory originally used to determine whether the loser or the finder of a horse had the better title” to claim a right in “results of socially important medical research.”16 First, it considered whether he had a cause of action under existing law. The court outright rejected Moore’s arguments that property and privacy rights could be linked. It found that “one may earnestly wish to protect privacy and dignity without accepting the extremely 11 12 13 14 15 16

Id. at 483. Id. Id. at 484. Id. Id. at 487. Id. at 487–488.

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problematic conclusion that interference with those interests amounts to a conversion of personal property.”17 After concluding that Moore had no conversion claim under existing law due to a lack of judicial precedent, contrary statutory law, and the University’s patent, the court then queried whether it should expand conversion liability to cover Moore’s claim. Again, it answered in the negative. The court gave three reasons: the troubling consequences that liability could have for biomedical research; the superiority of a legislative, rather than a judicial, response; and the availability of a valid cause of action for breach of fiduciary duty or lack of informed consent. Thus, it decided that allowing the conversion claim to proceed was both undesirable from a policy perspective and unnecessary to protect Moore’s rights. The California Supreme Court therefore reversed the court of appeals on the conversion issue.

Concurrences and Dissents Not all the justices on the California Supreme Court agreed with these outcomes. Justices Armand Arabian, Allen Broussard, and Stanley Mosk all wrote separately to express their own views.18 Justice Arabian concurred with the majority opinion but filed his own concurrence “to give voice” to the “moral issue” that he believed animated the majority opinion.19 In particular, he had deep concerns with Moore’s conversion claim, which would have required the court to recognize a property interest in the body. Justice Arabian found that proposition morally repugnant, characterizing Moore’s claim as “entreat[ing] [the court] to regard the human vessel – the single most venerated and protected subject in any civilized society – as equal with the basest commercial commodity.”20 Why engage in this morally problematic equivalence when Moore had a remedy at his disposal? Justice Arabian then agreed with the majority both that Moore should not be able to sue for conversion and that the legislature should decide whether contributors of biospecimens should be able to share in research profits. Justice Broussard concurred in part and dissented in part. He concurred fully with the majority’s take on breach of fiduciary duty claim against Golde.

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Id. at 491. Justice Broussard concurred in part, explaining that he would have extended conversion liability without threatening research by requiring that fraud by the physician be demonstrated, thereby invalidating the plaintiff’s consent. Id. at 498 (Broussard, J., concurring and dissenting). Id. at 497 (Arabian, J., concurring). Id.

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Justice Broussard disagreed, however, with the court’s decision to dismiss the fiduciary duty claim against the other defendants, finding it premature. He opined: “[i]f, after discovery, it becomes clear that the additional defendants bear no responsibility for either the original or continuing breach of fiduciary duty, those defendants can, of course, move for summary judgment on this count.”21 Justice Broussard noted that, unlike in the majority of situations when the value of a particular biospecimen is not apparent until after the research has begun, Golde and Quan were aware of the value of Moore’s tissue before they removed it from his body. While he acknowledged that the majority appreciated those novel facts regarding breach of fiduciary duty, he found the analysis deficient with respect to conversion. Justice Broussard relied on the temporal distinction, explaining that: the pertinent inquiry is not whether a patient generally retains an ownership interest in a body part after its removal from his body, but rather whether a patient has a right to determine, before a body part is removed, the use to which the part will be put after removal.22

Relying on the common law as well as California’s adoption of the Uniform Anatomical Gift Act, he concluded that Moore had adequately stated a cause of action for conversion. Finally, Justice Mosk dissented, completely rejecting the majority’s analysis. In a lengthy, point-by-point dissent, Mosk explained the reasons why he would have simply affirmed the court of appeals. First, he disagreed that existing law did not support an action for conversion. Mosk rejected the majority’s finding of a lack of precedent, explaining “[t]he issue is as new as its source – the recent explosive growth in the commercialization of biotechnology.”23 Put differently, novelty, not a lack of support, was responsible for the absence of precedent. He found the court’s use of statutory law likewise unpersuasive, asserting that in interpreting those laws, the majority took a truncated view of the meaning of property. Justice Mosk also stated that “a patent is not a license to defraud,”24 so merely filing a patent did not cut off Moore’s rights to his tissue. He suggested involving contributors of biospecimens in the patent process by listing them as joint inventors. Justice Mosk then dissected the majority’s reasons for not extending the law of conversion. He rejected the policy reasons related to hindering biomedical

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Id. at 500 (Broussard, J., concurring and dissenting). Id. at 501. Id. at 507 (Mosk, J., dissenting). Id. at 512.

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research because of its growing commercialization, pointing to “biotechnological and pharmaceutical companies demand[ing] and receiv[ing] exclusive rights.”25 Dismissing the majority’s fears of “destroy[ing] the economic incentive”26 as “hyperbole,”27 he argued that people have property rights in their bodies and that it would be unjust to exclude the individuals who contribute biospecimens from profiting alongside scientists and universities. Additionally, Justice Mosk came to a contrary conclusion in interpreting the statutes invoked by the majority. He believed that, instead of undermining Moore’s conversion claims, the law regulating organs and blood actually supported treating Moore’s tissue as property. Lastly, and perhaps most importantly, Justice Mosk found the disclosure cause of action inadequate for protecting Moore’s interests. After all, if your doctor told you that your life depended on removing your spleen, would you really withhold consent? Would a court then ever find that a decision not to operate would have been reasonable? Moreover, an action for informed consent only allows the patient to withhold consent altogether. It gives her no opportunity to grant consent and share in the research profits. Justice Mosk noted, somewhat prophetically in light of the Greenberg case discussed below, that not all researchers are fiduciaries. Hence, a disclosure cause of action would not apply to a whole host of potential defendants. In a final jab at the majority, he scolded them for imposing an “amateur biology lecture” on the reader, expressing his fear that the majority’s explanations are neither “correct [nor] balanced.”28 And perhaps Justice Mosk was right. Despite the majority’s faith in the viability of the breach of fiduciary duty/lack of informed consent claim, Moore did not actually win his case. He eventually negotiated what he called a “token” settlement that did little more than cover his legal fees.29 Moore, who died in 2001, lived out his remaining years advocating for patients’ rights. Based on the appellate history, the majority’s equivocations, and the impassioned dissent, Moore was not an easy or straightforward case. Nonetheless, as discussed in greater detail below, it has carried the day as the leading case on the rights of people who contribute biospecimens.

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Id. at 514. Id. at 515 (quoting Moore, 793 P.2d, at 495 [majority opinion]). Id. Id. at 521, 523. Dennis McLellan, John Moore, 56; Sued to Share Profits from His Cells, L.A. Times (Oct. 13, 2001, 12:00 A.M.), https://perma.cc/72J2-YRXH.

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feminist judgment Moore might have come out very differently had a feminist legal theorist been sitting on the California Supreme Court in 1990. As I have argued in previous work,30 the majority in Moore applied a predominantly economic approach to the important moral and philosophical questions facing the court. It feared that giving Moore an actionable property right in his tissue would eviscerate the incentives to innovate. Instead, the majority believed that relying on the breach of fiduciary duty/lack of informed consent cause of action struck the proper balance between costs and benefits. However, feminist legal theory – which puts a premium on autonomy, dignity, and privacy – weighs the social and moral concerns at the heart of Moore differently. Adopting feminist legal theory as an alternative lens, Professor Lisa C. Ikemoto, writing as Justice Ikemoto, offers a rewritten majority opinion that goes beyond the original opinion in both breadth and depth. She holds not only that Moore has a more expansive lack of informed consent claim, but that he also has adequate property rights in his body to sue for conversion. According to her analysis, Moore’s complaint states valid causes of action for lack of informed consent/ breach of fiduciary duty and for conversion against all five defendants. First, Ikemoto begins with a slightly different account of the facts. She is explicit that Golde’s records indicated Moore was in remission but that Golde never told him of that fact. She also explains that during the approximately one dozen times that Moore returned to UCLA to have his biospecimens collected, no one told Moore of his cells’ research or commercial value. Moore maintains that if he had known what Golde and Quan were up to, he would have never agreed to the splenectomy or the other procedures and might have even sought care at another hospital. Ikemoto is careful to point out the timing of Golde’s research with respect to the Bayh-Dole Act, noting that the University applied for the patent less than a month after the law went into effect, making the patent application appear even more opportunistic. Furthermore, unlike the original opinion, the rewrite provides the details regarding just how Moore discovered unconsented research was being done on his cells. It explains that in 1983, two years after the filing of the patent application for the Mo cell line, the defendants eventually asked Moore for consent to do research on his tissue. While he signed the initial consent, he subsequently declined to “voluntarily grant to the University of California any and all rights I, or my heirs may have in any cell line or any other potential

30

Jessica L. Roberts, Progressive Genetic Ownership, 93 Notre Dame L. Rev. 1105, 1112 (2018).

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product which might be developed from the blood and/or bone marrow obtained from me.” It was only after Moore refused to relinquish any rights he might have in research done on his tissue that he discovered what had been going on. Ikemoto situates the informed consent claim in its social and historical contexts. She explains how the modern doctrine of informed consent grew out of the deplorable events of the Holocaust and the Tuskegee Syphilis Study. Ikemoto acknowledges the role of social hierarchy and exploitation in these two examples, noting that “[l]ack of informed consent and targeting of people who were politically marginalized and seen as socially expendable characterized each of these research activities.” Rejecting the utilitarian reasoning embraced by the majority in Moore, Ikemoto reminds the reader that “[h]istory shows us, then, that ‘the public good’ is often accompanied by sacrifice of those deemed less capable of contributing to the public good.” She also explores the role of paternalism in biomedical research and the ways in which a “doctor-knows-best” attitude led to needless surgeries and other interventions that could impact women’s reproductive lives. Her message is clear: “Doctors who abrogated patient consent used utilitarian justifications based on claims of the greater social good.” Amid arguments about collective welfare, individual patients often get lost in the shuffle. Ikemoto points out that, in 1990, more was known about the HeLa cell line than about Henrietta Lacks. Informed consent then is essential to equality, as it protects the vulnerable. In two startling coincidences, Golde began his research on Moore’s cells just two years after Congress enacted the National Research Act in response to the Tuskegee Syphilis Study and the research on Moore’s cells received funding from the same federal entity that funded that same unethical and discredited study. As such, Ikemoto writes that under these circumstances “one wonders how defendants could have ignored the ethical and legal considerations.” Ikemoto identifies three core aspects of autonomy that lie at the heart of informed consent: (1) authority over one’s body, (2) the right to make one’s own decisions, and (3) the ability to form one’s identity. She asserts that “the need for informed consent is greatest where the risk of exploitation is highest.” Although Moore was not a member of a historically disadvantaged group, she maintains that his position as a patient with a life-threatening disease rendered him vulnerable. Ikemoto concludes that, by withholding relevant information, Golde and the other defendants denied Moore his right to self-determination. While the majority in Moore mentions conflicting loyalties in passing, Ikemoto addresses the issue directly. She explains that trust is a crucial

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element to the physician-patient relationship. Although some conflicts of interests within that sacred relationship are unavoidable, doctors who conduct research are uniquely susceptible. Adding an additional element of commercialization only exacerbates these tensions. Not only must modern clinical academics balance their patients’ best interests against their own interests in research, they must now also consider their opportunity for financial gains from that research. Ikemoto appreciates that the Moore case was happening during a crucial time for biomedical research and would, therefore, have lasting implications for people who contribute biospecimens. Again, rejecting utilitarianism, she explains that individual people like Moore can become casualties of the public good in these endeavors, and oftentimes, the benefit that arguably justifies their sacrifice is only the promise of potentially socially valuable research, not a tangible existing benefit. This perspective informs her analysis of Moore’s breach of fiduciary duty/lack of informed consent claims. Like Justice Panelli in the original opinion, Ikemoto’s feminist rewrite finds that Golde had a duty to disclose any information material to the patient’s decision to undergo treatment, including his research and economic interests. She explains that “[t]he fact that Golde had a non-therapeutic reason for recommending surgery and the multiple trips from Washington to Los Angeles for subsequent cell and tissue extractions suggests that Golde’s motives were not entirely in the patient’s best interests.” As such, Golde should have disclosed those interests to Moore. The similarities, however, end there. Ikemoto then takes on one of the issues raised by Justice Mosk in his dissent: Is the disclosure action adequate to protect Moore’s interests? Recall that the original opinion took the position that scientific advancement could depend on physicians conducting research on their patients. In stark contrast, Ikemoto believes the relationship to be inherently suspect and advocates taking additional steps to protect the patient. First, she suggests having a third party oversee the consent process to ensure the patient does not feel pressure to agree. When third-party consent is not possible, Ikemoto recommends “strict avoidance.” In her view, informed consent alone is not enough: “[T]he fiduciary with an irreconcilable conflict must choose a role: physician or researcher.” Further departing from Justice Panelli’s reasoning, Ikemoto holds researchers accountable. She notes that researchers and their institutions have obligations to their subjects, including obtaining informed consent for research participation. She urges us to be wary of how scientists acquire research materials, including data. Consequently, she finds that “researchers who use human cells and tissues have a fiduciary obligation to inquire about how cells

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and tissues were provided and to obtain information assuring that research materials were provided in compliance with law and ethics.” Put simply, researchers must do due diligence. Ikemoto would likewise hold that research institutions also have limited duties. She finds that they are well-situated for protecting patient interests. Those institutions have both the funding and infrastructure to hold researchers accountable. Moreover, as health care providers, academic medical centers enjoy public trust, even if they cannot be held legally liable for medical negligence. She adopts a proposal similar to the one suggested for the researchers themselves. At a minimum, she believes that research institutions should monitor conflicts of interest and oversee the consent process. However, in cases – like Moore – where competing interests exist and the risk of exploitation is high, she again advocates third-party oversight. Even commercial partners do not escape liability under Ikemoto’s analysis. Because they rarely have contact with research subjects or the contributors of biospecimens, she imposes a “duty of due diligence” to ensure that the research materials from which they benefit commercially were obtained legally and ethically. Ikemoto next turns to Moore’s property-based claims. Justice Panelli focused primarily on the potential costs that property interests could impose on medical research and, by consequence, society as a whole. Instead of adopting this welfarist lens, Ikemoto’s feminist rewrite considers physical and decisional autonomy and vulnerability to exploitation. She breaks her analysis down into two related rights with respect to the body and its by-products: the right to use and the right to commercialize. Like Justice Mosk in his dissent, Ikemoto takes an expansive view of the meaning of property. Coming to a contrary conclusion than that of the original opinion, she asserts that people have property rights in their bodies. She appreciates the connection between privacy and property, especially with respect to bodily integrity. She explains that “[s]elf-ownership and authority over one’s own body provides a means of protecting oneself from exploitation and involuntary commodification.” To support her position, she cites legal authorities that give individuals control over their bodies in a number of ways, such as the right to refuse medical treatment, the ability to dictate what happens to a loved one’s corpse, and the right to an abortion. Ikemoto holds that the ability to control one’s body extends to excised body parts. She points out flawed logic of the defendants’ argument that Moore lost all interest in his cells once they were removed from his body using the California Anatomical Gift Act, which allows individuals to dictate what happens to their tissue, even after death and over the objections of surviving

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family members. Ikemoto notes that people may well feel a connection to their tissue after its removal and that, in certain circumstances, the law protects their interests. While property law has its limitations and not all individuals may be attached to their excised tissue, individuals nonetheless have rights to self-ownership or dominion over their body. She explains that genetic science may intensify the importance of these issues, as cells contain our personal genetic information. In further support of her position that one can have a property right in one’s excised cells, Ikemoto explains that existing law allows an individual to transfer control over one’s tissue for one use but not another. She points out that the very consent form presented to Moore allowed him to authorize one use – research – while simultaneously declining to release his commercial interests in the products of that research. Moore’s unwillingness to sign that form is what set off the chain of events culminating in his lawsuit. Ikemoto characterizes the defendants’ arguments as “mak[ing] excised human cells and tissue into ferae naturae, available for capture and use by others.” She finds this outcome “absurd.” Hence, she holds that Moore maintained sufficient property interests in his cells to sue for conversion. Ikemoto next responds to the defendants’ policy concerns. She finds the argument that recognizing property interests in the body will impede research speculative. Turning the reasoning of the majority in the original Moore on its head and adopting a position similar to Justice Mosk, she considers how patents and commercialization could actually hinder research and deny access to needed innovations. She states that “[t]his reality counters the simple story that equates research with the public good.” While people may assume that contributors of biospecimens will use their newfound property rights only for impeding research, she explains that patients and advocates can actually move research forward. To start, most patients will be unable to meaningfully commercialize their tissue on their own and will require the help of researchers, academic institutions, or biotech companies. Hence, patients may well transfer these rights. Moreover, patient participation may actually enhance biomedical research. Ikemoto describes how patients have led to progress in a number of areas, including women’s health, breast cancer treatment, drug approval for HIV/AIDS, and hemophilia research. She concludes that “[t]hese examples demonstrate that recognizing patient rights, and property rights in particular, is not the death of innovation.” On the contrary, these examples show that protecting patient self-determination may facilitate innovation and ensure that the public good reflects patient interests in addition to investor interests.” She therefore concludes that legally recognized property rights protect patients and facilitate participatory research.

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Feminist legal theory offers an intriguing alternate approach to Moore. Instead of focusing on economic incentives, costs, and benefits, Ikemoto’s thoughtful opinion teases out several important themes absent from the original version, including social inequality, power disparities, and vulnerability to exploitation. Moreover, a feminist reading adds greater dimension to a number of the important issues and social values that appeared in Moore and its accompanying opinions. Ikemoto’s rewriting gives social and historical context to the questions dealing with privacy, bodily integrity, and the abilities to grant and to withhold consent. It also recognizes the work that property rights can do in promoting important values like privacy, autonomy, and dignity. This alternative lens would have had a discernible effect on the cases that followed Moore.

impact Moore has had a significant impact. A quick Lexis search reveals that the case has appeared in 756 court decisions, including eighty-seven federal cases spanning ten different circuits. State courts in Arkansas, Colorado, Connecticut, Florida, Iowa, Illinois, Indiana, Massachusetts, Minnesota, New Mexico, New York, Texas, Vermont, and Washington have also looked to Moore. Quite interestingly, Moore’s importance seems to be waxing over time, not waning. For about a decade, it laid relatively dormant. Then, in the early 2000s, the number of yearly citations shot up and has remained relatively high ever since. In short, Moore continues to be incredibly important both within health law and beyond. To illustrate the impact Ikemoto’s feminist judgment might have had if it had been the actual opinion, I consider two of Moore’s most famous progeny. These cases demonstrate how Ikemoto’s decision to impose fiduciary duties on researchers, who have direct contact with patients who provide biospecimens, would have provided an important precedent for addressing the potential inequality and exploitation in relationships between researcher-physicians and the patients they treat. Greenberg v. Miami Children’s Hospital Thirteen years after Moore and all the way across the country, a federal district court in Florida decided another important case for people who contribute biospecimens.31 Parents of children with Canavan disease approached a researcher, Dr. Reuben Matalon, to encourage him to study 31

Greenberg v. Mia. Child.’s Hosp. Rsch. Inst., Inc., 264 F. Supp. 2d 1064, 1066 (S.D. Fla. 2003).

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the condition in the hopes of discovering its genetic basis. They provided Matalon with a host of resources, including biospecimens from affected families, pedigrees, contact information, and financial support. The families had the expectation that “any carrier and prenatal testing developed in connection with the research for which they were providing essential support would be provided on an affordable and accessible basis” and that the resulting research would remain in the public domain.32 However, when Matalon located the gene behind Canavan disease, the hospital where Matalon worked patented Malaton’s research. The families only discovered this fact when the hospital began to enforce the patents to limit testing for the Canavan gene. The families, along with non-profit organizations that supported the research, sued Matalon, the hospital, and the hospital’s research institution. Like Moore, their lawsuit included causes of action for breach of fiduciary duty, lack of informed consent, and conversion. Judge Federico A. Moreno presided over the case. Based in part on Moore, the district court found these claims unpersuasive. With respect to the lack of informed consent, the court first explained that researchers do not share the same duties as clinicians under Florida law. Moreover, the court distinguished the current case from precedents in other jurisdictions because the Greenberg plaintiffs were donors, not research subjects. Nonetheless, it addressed the question as to whether to extend a researcher’s consent obligations to her economic interests. The plaintiffs cited Moore in favor of such an extension. Again, citing the lack of a treatment relationship, the court found Moore “clearly distinguishable.”33 Like Justice Panelli in Moore, Judge Moreno adopted utilitarianism as his preferred theoretical lens, finding that an added duty would just be too costly. Having decided the informed consent claim, the court turned to the alleged breach of fiduciary duty. It found that while the plaintiffs may have put their trust in the defendants, the defendants did not accept that trust. Hence, no fiduciary relationship was ever established. In other words, accepting someone’s tissue does not amount to their accepting trust. While the court distinguished Moore with respect to informed consent, it relied on the decision for conversion. Noting that Greenberg bore similarity to Moore, it cited the California Supreme Court for the propositions that “the use of the results of medical research inconsistent with the wishes of the donor was not conversion, because the donor had no property interest at stake after 32

33

Id. at 1607 (quoting Amended Compl. at 8, } 22, Greenberg v. Mia. Child.’s Hosp. Rsch. Inst., Inc., 264 F. Supp. 2d 1064 [S.D. Fla. 2003] [No. 02-22244-Civ-Moreno]). Id. at 1070.

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the donation was made”34 and “the patented result of research is ‘both factually and legally distinct’ from excised material used in the research.”35 The court ultimately concluded that “Florida statutory and common law do not provide a remedy for Plaintiffs’ donations of body tissue and blood samples under a theory of conversion liability.”36 Judge Moreno, however, did not throw out the lawsuit completely. He allowed the claim for unjust enrichment, which asserted that the defendants had unfairly benefited from the plaintiffs’ biospecimens and financial support among other things, to move forward. On a happier note, the case eventually settled and, as part of the settlement agreement, the defendants agreed not to license the patent restrictively. Regardless, Greenberg has stood for the proposition that researchers do not have fiduciary duties to contributors of biospecimens and that people enjoy no property rights in their excised cells. The Greenberg case would have come out differently had Judge Moreno relied on Ikemoto’s opinion in Moore. To start, both the researchers and the hospital may have owed duties to the plaintiffs. Greenberg exemplifies the kinds of troubling power disparities and opportunities for exploitation that can arise in biomedical research. The plaintiffs, as parents of sick children, were desperate to understand and combat Canavan disease. Unable to conduct the necessary research themselves, they did all that they could to support someone who was willing to help them make sense of their children’s debilitating health condition. The opportunity to profit from the gene and its associated tests was likely nowhere in their minds. Moreover, people of Eastern European Jewish ancestry are much more likely to carry the genetic variation associated with Canavan disease. Thus, the affected families were likely members of an ethic group that has experienced persecution, adding another element of potential inequality to the mix. Recall that Ikemoto would impose – at a minimum – a duty for researchers to ensure that their biospecimens were legally and ethically acquired. Unlike the typical research relationship, Matalon knew these families. He had interacted with them firsthand. As such, it would seem to be exactly the kind of situation that would demand a heightened duty to act ethically. Ikemoto’s opinion would have allowed the court to hold Dr. Matalon and his research team accountable for failing to share his intent to commercialize the research. Likewise, the hospital might have also had certain obligations pursuant to Ikemoto’s reasoning. It would have had to ensure that the researchers did not 34 35 36

Id. at 1074 (citing Moore v. Regents of Univ. of Cal., 793 P.2d 479, 497 [Cal. 1990]). Id. (quoting Moore, 793 P.2d at 492). Id. at 1075.

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have conflicting loyalties and had obtained consent. Depending then on how the court came out on Matalon’s liability, the research institution might also find itself on the hook. And, of course, under Ikemoto’s reading, the district court in Greenberg would have had to take the conversion claim more seriously. It would not have been able to dismiss the claim based on the absence of a property interest in the excised cells. That is not to say that the Greenberg plaintiffs would have necessarily won on this issue. Consent is a defense to conversion. Arguably, Matalon did precisely what they wanted with their biospecimens: He used them for Canavan disease research. Washington University v. Catalona Washington University v. Catalona37 involved another dispute over people’s interests in their biospecimens. Like Golde, Dr. William J. Catalona was a physician and a researcher at an academic medical center. As part of Catalona’s work, he helped Washington University establish an extensive collection of biospecimens for research. The biorepository included thousands of samples taken from Catalona’s patients and other donors. When he decided to move from Washington University to Northwestern, Catalona hoped to continue his research. He thus sent a letter to all research participants – regardless of whether they had been his patients – explaining his intent to leave. Catalona wrote that he needed: to have the tissue and blood samples that patients, their relatives, and other research volunteers have contributed to me over the years’ and that the recipients ‘[had] entrusted [him] with samples, and [he had] used them for collaborative research that will help in [their] future medical care and in the care of others for years to come.’38

He then entreated them to sign an enclosed form that would release all their samples to Catalona at Northwestern. Around 6,000 people signed and returned the form. Washington University then filed a declaratory judgment to establish that the university owned the samples in the biorepository. Eight of Catalona’s patients intervened on behalf of the doctor.39 The federal district court looked to Moore and Greenberg for guidance. It found that both courts treated the research participants as donors “who had 37 38

39

437 F. Supp. 2d 985 (E.D. Mo. 2006). Id. at 993 (quoting Letter from William J. Catalona, M.D., Washington University, to patients [Feb. 2003]). Id. at 989.

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parted with any semblance of ownership rights once their biological materials had been excised for medical research.”40 The court also found that research participants had the intent to donate their biospecimens for medical research and that Washington University accepted those donations and used them accordingly. The court therefore concluded that the university owned the contents of the biorepository and the Eighth Circuit affirmed.41 Catalona provides an interesting contrast to Greenberg. Catalona was more of a dispute between sophisticated parties, mainly a grant-funded researcher and a nationally prominent research institution. Many of the contributors of biospecimens in that case appear to have willingly given samples and participated in research with no concurrent expectations. As such, it is less clear whether the university violated the research participants’ trust, privacy, or bodily integrity. The kinds of social and relational inequalities present in Moore and Greenberg are arguably absent in Catalona. Thus, Ikemoto’s opinion would perhaps have little to no effect. The above analysis demonstrates the value and flexibility of a feminist perspective on consent, fiduciary duties, and conversion. Ikemoto’s reimagining could have had a profound potential impact on Greenberg, where a significant power disparity existed between the parties, but not in Catalona, where the two major parties were highly sophisticated. Imposing fiduciary duties – particularly on researchers who have direct contact with the sources of the biospecimens – would offer important protection against potential inequality and exploitation. But a feminist rewrite of Moore is far from a rubber stamp on all claims by research participants and tissue donors. Ikemoto holds that Moore could sue for conversion because the defendants took and used his cells without his consent. In both Greenberg and Catalona, however, the contributors of biospecimens wanted their samples to be used in research. Hence, valid consent would still offer a useful defense against conversion in the context of biomedical research.

conclusion Ikemoto’s feminist rewriting of the majority opinion in Moore v. Regents of the University of California replaces the utilitarian analysis of Justice Panelli with a nuanced, value-pluralist account designed to protect trust and prevent inequality. As explained above, there are clear benefits to such an approach. Yet, even without a feminist Moore, we are arguably moving toward more robust rights for the contributors of biospecimens. The Revised Common 40 41

Id. at 997 (discussing both Moore and Greenberg). Wash. Univ. v. Catalona, 490 F.3d 667 (8th Cir. 2007).

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Rule, the federal regulation governing federally funded research, now requires some of what Ikemoto’s opinion could have achieved. Covered researchers must include, when appropriate, “a statement that the subject’s biospecimens (even if identifiers are removed) may be used for commercial profit and whether the subject will or will not share in this commercial profit.”42 While the regulation effectively overrules Greenberg for publicly funded researchers, researchers in the private sector may still have no obligation to share their intent to commercialize theirs findings.43 Moreover, the Common Rule includes no private right of action, and therefore, contributors of biospecimens still cannot personally sue researchers for failing to disclose their economic interests and claims for the conversion of biospecimens remain unpopular. As courts inevitably take up these questions in the future, perhaps there will be a feminist legal theorist sitting on the bench to offer this important perspective.

MOORE V. REGENTS OF THE UNIVERSITY OF CALIFORNIA, 793 P.2D 479 (1990)

justice lisa c. ikemoto delivered the opinion of the court

i We grant review in this case to determine whether Plaintiff John Moore has stated a cause of action against UCLA employees and other defendants for the nonconsensual removal, use, and commercialization of his cells and tissues. The superior court sustained all Defendants’ demurrers to the third amended complaint, and the court of appeal reversed. We hold that the complaint states a cause of action for breach of informed consent, breach of fiduciary duty, and for property-based claims, including conversion.

ii This case arises from a demurrer. Our task is to determine whether the complaint states a cause of action. Therefore, we take the allegations stated 42

43

Protection of Human Subjects, General Requirements for Informed Consent, 45 C.F.R. § 46.114(c)(7) (2018). Jessica L. Roberts, Negotiating Commercial Interests in Biospecimens, 45 J.L. Med & Ethics 138, 138 (2017).

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in the complaint as true. We give the complaint a reasonable interpretation by reading it as a whole and in context. Plaintiff John Moore sought a second opinion and treatment for hairy cell leukemia at the University of California, Los Angeles Medical Center. The five defendants are UCLA employees: (1) David W. Golde, a physician who attended Moore at UCLA, and (2) Shirley G. Quan, a researcher, (3) Regents of the University of California, (4) Genetics Institute, Inc. (Genetics Institute), and (5) Sandoz Pharmaceuticals Corporation and related entities (collectively Sandoz). In 1976, John Moore received a diagnosis of hairy cell leukemia, a blood cancer. He then sought treatment at UCLA. On October 5, 1976, Moore was admitted at UCLA Medical Center for testing, which included taking extensive samples of blood, bone marrow aspirate, and other bodily substances. On October 8, 1976, Dr. David W. Golde, UCLA professor of medicine, confirmed Moore’s diagnosis and recommended that Moore undergo a splenectomy to remove his dangerously enlarged spleen. Presurgery examination of Moore’s tissues revealed that Moore was biologically unique. The complaint alleges: 14. Prior to the surgical removal of plaintiff’s spleen, Defendant David W. Golde, M.D., Defendant Shirley G. Quan, and other Defendants, without advising plaintiff or obtaining his consent, formed the intent and made arrangements to obtain portions of his spleen following its removal from plaintiff in connection with their desire to have regular and continuous access to, and possession of, plaintiff’s unique and rare Blood and Bodily Substances.

Moore v. Regents of the Univ. of Cal., 249 Cal. Rptr. 494, 499 (Ct. App. 1988). Moore signed a written consent authorizing the splenectomy, and on October 20, 1976, Moore had his spleen removed at UCLA. Immediately after the splenectomy, per Golde’s written instructions, some of Moore’s spleen was taken to a research unit at UCLA. There, Moore’s spleen tissues were used and stored for research. At Golde’s direction, Moore returned approximately one dozen times to UCLA from his home in the state of Washington between November 1976 and September 1983. During the course of these visits, Golde obtained from Moore multiple cell and tissue samples, including blood, blood serum, skin, bone marrow aspirate, and sperm. When Moore asked whether he could undergo testing in Washington, Golde told Moore that the visits were necessary follow-up cancer care. Yet, during this period of time, the defendants actively engaged in activities which they concealed from Moore. These

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activities included conducting research on Moore’s cells and tissues for the purpose of exploiting their unique characteristics, acquiring exclusive access to Moore’s cells, and developing commercial products. Sometime before August 1979, Golde and Quan developed a cell line from the T-lymphocytes in Moore’s cells and tissues, without his knowledge or consent. Moore’s T-lymphocytes or T-cells produced high levels of proteins which had been previously expensive to create, and which had potential uses in research and therapy. The proteins of interest are involved in the creation of red and white blood cells, and in modulating the body’s immune response. Golde and Quan’s development of the cell line was funded by a US Public Health Service grant. Following custom, the parties named the cell line, “Mo” for Moore, after the human source of the tissues. On January 30, 1981, just weeks after a federal law, the Bayh-Dole Act, authorized universities hosting federally funded research to retain patent control on research products, the Regents applied for a patent on the cell line, listing Golde and Quan as the inventors. These commercialization efforts were shaped by university policy and federal law, both of which enabled the Regents, Golde, and Quan to share in any royalties or profits arising from the patent. The patent documents for the Mo cell line include a case history of Moore’s diagnosis and splenectomy. The case history states, “[p]ost-operatively, absolute platelet and granulocyte counts returned to normal.” Moore, 249 Cal. Rptr. at app. A at 521. In public testimony before the US House of Representatives, Moore stated that he was never told that he was in remission. Use of Human Biological Materials in the Development of Biomedical Prods.: Hearing before the H.S. Comm. on Investigation and Oversight of the Comm. on Sci. & Tech. Hearings, 99th Cong. 246, (1985) (statement of John L. Moore). His complaint alleges that he was “never informed by the defendants of the research and commercial value of his Blood and Bodily Substances, including his spleen.” Moore, 249 Cal. Rptr. at 499. Plaintiff further alleges that had he known what was taking place, he would not have consented to the splenectomy and subsequent procedures and would have considered seeking treatment at another medical facility. Moore, 249 Cal. Rptr. at 500 (1988). In 1981, 1982, and 1983, the University of California and its employees, Golde and Quan, contracted with Genetics Institute (Genetics) and Sandoz Ltd., Sandoz United States, Inc., and Sandoz Pharmaceutical Corporation (collectively Sandoz) to collaborate on commercial exploitation of the cell line and resulting products. Under the terms of these agreements, Golde received 75,000 shares of stock from Genetics at a nominal price. Genetics also agreed to pay $330,000 to the Regents and Golde over three years. Sandoz

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paid the Regents and Golde $110,000. In return, the Regents, Golde, and Quan provided the commercial firms with rights to use the cell line, and Golde and Quan spent a substantial amount of time working, on behalf of the commercial firms, to develop products from the cell line and from Moore’s cells and tissues. Defendants have predicted a potential market of over three billion dollars by the year 1990 for a range of products derived from Plaintiff’s cells and tissues, and from the cell lines. The patent, issued on March 20, 1984, names Golde and Quan as inventors of the cell line and the Regents as assignee of the patent. US Patent No. 4,438,032 (filed Mar. 20, 1984). The patent covers a wide range of methods for using the cell line including methods for isolation and purification of proteins of interest and methods for cloning the genes responsible, so that large-scale production of the proteins is feasible. Id. Defendants have forecast a market of over three billion dollars by the year 1990 for a range of products derived from Moore’s cells and tissues and from the cell lines created from them. Moore’s complaint admits that “the true clinical potential of each of the lymphokines . . . [is] difficult to predict,” but defendants have forecast a potential market of approximately $3.01 billion dollars by the year 1990 for the range of products derived from Moore’s cells, tissues, and the cell lines created from those bodily substances. Not until 1983 did defendants seek after-the-fact consent for use of Moore’s tissues in research and development. During a visit to UCLA on April 11, 1983, defendants procured tissue and presented Moore with a consent form. Moore was told that the research addressed lymphoma and blood cancers. Moore signed the form without knowing of defendants’ specific research and commercial activities. He would not have consented had he known. In September 1983, Moore was asked to sign a form with the heading, “Informed Consent for the Use of Blood and Bone Marrow Tissue for Medical Research Concerned with ‘Growth of Human Hemopoietic Cells In Vitro.’” Moore consented to tissue removal and participation “in a research project which is designed to investigate the function of blood-forming cells in various disease states.” The form included the text “I (do, do not) voluntarily grant to the University of California any and all rights I, or my heirs may have in any cell line or any other potential product which might be developed from the blood and/or bone marrow obtained from me.” Moore circled, “do not.” Moore, 249 Cal. Rptr. at app. B at 531. The language in the September 1983 form and subsequent efforts to pressure Moore into granting rights in the cell line and other products prompted Moore’s inquiry into Golde’s research activities and discovery of the Mo cell line and patent.

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Moore’s third amended complaint states thirteen causes of action. We granted review to determine whether Plaintiff has stated a cause of action against Dr. Golde, Dr. Quan, the Regents of the University of California, and their commercial partners, for using Moore’s cells in potentially lucrative biomedical research, without his knowledge or consent.

iii A 1 Not so long ago, fully informed and voluntary consent was the exception rather than the rule in both clinical medicine and human subject research. The notion of patient and human subject rights organized around knowing and voluntary consent did not emerge as an ethical commitment and legal rule in the United States until after World War II. A 1957 California decision first articulated the affirmative duty to disclose. Salgo v. Leland Stanford Jr. Univ. Bd. of Trs., 317 P.2d 170 (Cal. Ct. App. 1957). In the absence of informed consent, those who experienced the most egregious deprivations of dignity and physical harm were those who were subject to unequal treatment in many aspects of their lives. In the research context, informed consent became an ethical and legal requirement implemented in response to the worst cases. The Nuremberg Code, issued as part of the war crimes judgment against Nazi doctors, US Army Issuing Body, Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, Vol. 2 (1949), 181–182, included “voluntariness” as a standard for participation in human subject research. Voluntariness was the first of ten principles the Code established. Id. at 181. In the United States, the first comprehensive federal regulation of human subject research emerged in response to public furor over the Tuskegee Syphilis Study. Linda Williams Standridge, Experimentation on Humans in Biomedical Research: Implications for the Industry of Recent Legislation and Cases, 63 Women’s L.J. 88, 88 (1977). Public health researchers conducted the Tuskegee Syphilis Study using hundreds of African American men living in poverty. Jean Heller, Syphilis Victims in U.S. Study Went Untreated for 40 Years, N.Y. Times, July 26, 1972, at 1; W. Montague Cobb, M.D., The Tuskegee Syphilis Study, 65 JAMA 345, 346 (1973). The study began in 1932 for the purpose of following the natural course of syphilis in the “Negro Male.” It was, unquestionably, premised on scientific racism. Allan

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M. Brandt, Racism and Research: The Case of the Tuskegee Syphilis Study, 8 Hastings Ctr. Rep. 21, 23, nn. 33, 37 (1978). In addition, the researchers did not disclose the stated purpose of the research or the diagnosis of syphilis to participants. Nor did they offer treatment, even after the advent of penicillin. Id. at 21. The Tuskegee Syphilis Study followed from a long history of egregious abuse of people in the name of medical science. This history included the use of women held in slavery as guinea pigs for gynecological surgery, and of a long list of imprisoned and severely ill people, as well as members of the military for a wider range of experiments. See, for example, Diana E. Axelsen, Women as Victims of Medical Experimentation: J. Marion Sims’ Surgery on Slave Women, 1845–1850, 2 SAGE 10–13 (1985); J. Marion Sims, The Story of My Life 236 (1884); Direct Testimony of Dr. V. K. Rowe, Before the Environmental Protection Agency of the United States of America, In Re: The Dow Chemical Company et al., FIFRA Docket Nos. 415 et al. (1980), https://perma.cc/EVQ3-GFRJ; Aaron Epstein, Human Guinea Pigs: Dioxin Tested at Holmesburg, Phila. Inquirer (1981); Henry K. Beecher, Ethics and Clinical Research, 274 New Eng. J. Med. 1334 (1966) (describing the study of viral hepatitis on children with intellectual disabilities and noting that research methods included deliberate infection of children with the hepatitis virus); Jay Katz, Experimentation with Human Beings: The Authority of the Investigator, Subject, Professions, and State in the Human Experimentation Process 965 (1972) (describing research at the Brooklyn Jewish Chronic Disease Hospital in New York and noting that the research used twenty-two elderly, chronically ill patients who were indigent and were injected with live cancer cells to test the immune response); United States v. Stanley, 483 U.S. 669 (1987) (denying negligence claims by a serviceman under the Federal Tort Claims Act for nonconsensual administration of LSD). Many research activities conducted in disregard of informed consent took place during and after World War II. Each of the research activities were characterized by lack of informed consent and the targeting of people who were politically marginalized and seen as socially expendable. This history shows us, then, that “the public good” often requires sacrifice of those deemed less capable of contributing to the public good. Paternalism was the rule in clinical medicine until the late-twentieth century. In the late 1960s and early 1970s, women’s health activists rejected medical paternalism. They showed that (mostly male) doctors practicing doctor-knows-best medicine opted for unnecessarily invasive surgeries on female patients. As a result, women underwent brutal radical mastectomies and unnecessary hysterectomies without the opportunity to consider alternative treatment. Trudy K. Landwirth, The Women’s Health Movement, 12 The

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Serials Librarian 89 (1987). Two early cases illustrate medical paternalism and its effects on women. Pratt v. Davis arose after Dr. Pratt removed Parmelia Davis’ ovaries and uterus to treat epilepsy. He acknowledged withholding the nature of the surgery from the patient because “[h]e did not deem her worthy [of an explanation]” because “he wished her to come to the operating room without violence.” Pratt v. Davis, 118 Ill. App. 161, 169–170 (Ill. App. Ct. 1905). A few years later, Mary Schloendorff agreed to an ether examination of a fibroid tumor, but specifically told her doctor that there should be no operation. The doctor did, in fact, perform surgery. In the case that resulted, Justice Cardozo stated that a surgeon who performs an operation without his patient’s consent commits an assault for which he is liable in damages.” Schloendorff v. Society of N.Y. Hosp., 105 N.E. 92 (N.Y. 1914). This is discussed in detail in Chapter 2. Doctors have also used “the public good” to justify procedures that were involuntary and violated reproductive rights. Class action cases such as Relf v. Weinberger, 372 F. Supp. 1196 (D.D.C. 1974), and Madrigal v. Qulligan, CV-75-2057-EC (C.D. Cal. June 7, 1978), portray abuse of power that doctors have over poor and minority women. See also Antonia Hernandez, Chicanas and the Issue of Involuntary Sterilization: Reforms Needed to Protect Informed Consent, 3 Chicana/o Latina/o L. Rev. 3, 409 (1976). Those cases revealed accounts of doctors who sterilized girls and women without their consent, and often without their knowledge. US Senate hearings on the involuntary sterilization of African American low-income women and girls also revealed the misuse of an investigational contraceptive drug on the same populations. Quality of Health Care – Human Experimentation, 1973: Hearings Before the Subcomm. on Health of the Comm. on Lab. & Pub. Welfare, 93rd Cong. 1497 (1973) (statement of Joseph Levin, Esq., General Counsel, Southern Poverty Law Center, Montgomery, Ala., accompanied by Mr. and Mrs. Relf, Montgomery, Ala., and Warren Hern, M.D., M.P.H., Denver, Colo.). Doctors who abrogated patient consent used utilitarian justifications based on claims of the greater social good. Perhaps most telling, given the facts of this case, is the story of Henrietta Lacks. Henrietta Lacks was a Black woman who lived in relative poverty, in Baltimore. She sought treatment and ultimately died from a particularly virulent cervical cancer at the Johns Hopkins Medical Center. Eight months before her death, her cancer cells were cultivated into the first human cell line. The biologist who cultured the cell line named it HeLa, and yet, Henrietta Lacks was never asked nor informed about the use of her cells for non-therapeutic purposes. More is known about the cell line than about the person whose cells were used. See Michael Gold, A Conspiracy of Cells: One

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Woman’s Immortal Legacy and the Medical Scandal It Caused (1985) (recounting the research problems caused by the vigor of the cell line but providing little information about Henrietta Lacks). In short, history shows that the legal requirement of informed consent developed in response to autonomy risks arising from inequality. Social and political inequality based on gender, race, religion, disability, and income made some individuals more vulnerable to intrusion or restraint on autonomy than others. Informed consent, therefore, should also be understood as a bulwark against exploitation and paternalism of those made vulnerable by inequality. Defendants’ use of Moore’s cells began just two years after Congress responded to the Tuskegee Syphilis Study by enacting the National Research Act. Pub. L. No. 93-348, 88 Stat. 342 (1974). Enactment of the National Research Act in 1974 resulted in the issuance of Part 46 of the Code of Federal Regulations: Protection of Human Subjects. 45 C.F.R. § 46 (2009). Use of Moore’s cells and tissues to create the Mo cell line and other products was not directly regulated by the federal rules. Yet, given the thenrecent national conversation about the importance of knowing and voluntary consent and exploitation in research, and the fact that the US Public Health Service funded both the Tuskegee Syphilis Study and defendants’ work on the Mo cell line, one wonders how defendants could have ignored the ethical and legal considerations. 2 Today, the doctrine of informed consent protects patients and participants in health care and research settings. The doctrine protects at least three linked aspects of autonomy or self-determination. At the simplest level, the requirement of informed consent enables one to exercise authority over one’s own body. Schloendorff provides foundation for the doctrine, Justice Cardozo stating, “[e]very human being of adult years and sound mind has a right to determine what shall be done with his own body.” Schloendorff, 105 N.E. at 93; see also Cobbs v. Grant, 502 P.2d 1, 9 (Cal. 1972) (“A person of adult years and in sound mind has the right, in the exercise of control over his own body, to determine whether or not to submit to lawful medical treatment.”) The body is the most important tangible manifestation of a person, and thus forms a material demarcation between a person and others. Authority over one’s own body is necessary for physical liberty and basic self-protection. The requirement of informed consent also protects decisional autonomy, the right to accept or refuse physical interference with or impositions on the body based on one’s own values, life circumstances, and weighing of risks and benefits. Jay

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Katz, The Silent World of Doctor and Patient 102 (1984). Informed consent, then, protects an important aspect of identity formation – that produced by making decisions about one’s body that express one’s values, worldview, and understanding of the relationship between self and others. The third aspect reflects the connection between the individual and society. The requirement of informed consent rejects utilitarian calculi that produce subordination in the name of the public good. Rather, informed consent insists that authority over one’s own body in a biomedical setting be protected equally. History shows that the need for informed consent is greatest where the risk of exploitation is highest. The examples cited above illustrate the risks of inequality arising from discrimination on the basis of religious identity, race, sex, and disability. At the same time, all patients, regardless of identity, have the right to the protections of informed consent. The fact that Mr. Moore, a white man, has a claim for breach of informed consent may reflect three things. First, he is a patient. He sought treatment from Dr. Golde, an expert in blood cancers. In an early case, we identified four postulates of informed consent. The first and the fourth postulates speak to the inequality within the doctor-patient relationship: The first is that patients are generally persons unlearned in the medical sciences and therefore, except in rare cases, courts may safely assume the knowledge of patient and physician are not in parity . . . and the fourth is that the patient, being unlearned in medical sciences, has an abject dependence upon and trust in his physician for the information upon which he relies during the informational process.

Cobbs, 502 P.2d at 9. Nearly all patients, therefore, experience inequality vis-àvis their doctors. Doctors’ authority is enhanced by their expertise and the fact that most physician-patient encounters take place in medical facilities where the physician has a “home court” advantage. See Sue Fisher, In the Patient’s Best Interest: Women and the Politics of Medical Decisions (1986). California courts have recognized this point: “[I]f the right of the patient to selfdetermination as to his own medical treatment is to have any meaning at all, it must be paramount to the interests of the patient’s hospital and doctors.” Bartling v. Superior Court, 209 Cal. Rptr. 220, 225 (Ct. App. 1984). Second, John Moore was a patient with a life-threatening disease. Mortal threat to health and life increases vulnerability for many. At the least, it makes the consequences of failure to disclose more fraught. Third, Moore, as a white man, may be an indicator, a canary in the coal mine. The fact that John Moore was exploited may indicate that others are at greater risk. Scholarly work on doctor-patient interaction shows that social context shapes the

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interaction. Gender, educational, and socio-economic differences between physician and patient can negatively affect communication between physician and patient. See generally Fisher, supra. In general, the scope of disclosure should be tailored to effectuate selfdetermination by a reasonable patient. Cobbs, 502 P.2d at 9. Moore should have received information that would have enabled him to weigh the risks and benefits of each of the many procedures he underwent, considering the purposes of informed consent and the risks of exploitation he faced. 3 Conflicts of interest heighten the need for rights and protections of the more vulnerable party in a relationship. This is particularly true when the relationship is characterized by trust. Trust is so central to the physician-patient relationship that law and ethics treat the physician’s duty to the patient as a fiduciary relationship. Frances H. Miller, Secondary Income from Recommended Treatment: Should Fiduciary Principles Constrain Physician Behavior?, in The New Health Care for Profit: Doctors and Hospitals in a Competitive Environment 153 (Bradford H. Gray ed. 1983). “[D]octors owe a duty of loyalty to their patient’s interests that requires them to elevate their conduct above that of commercial actors.” Id. As Amici notes, conflicts of interest are inherent in the standard doctorpatient relationship. First, the physician both manages the patient’s care and supplies the medical goods and services. Second, existence of therapeutic alternatives provides the opportunity for recommendations based on potential financial rewards or personal values. Amicus Br. of the People’s Med. Soc’y, at 5. Academic physician-researchers are also subject to career demands – to research and publish – that may pull the physician away from patient care or skew the physician’s therapeutic recommendations toward her or his research interests. Despite the prevalence of conflicts of interest, they can be distinguished. Proximity between treatment and the reward competing with the physician’s duty, as well as the significance of the reward, make conflicts more or less weighty. A physician who plays a dual role, doctor and researcher, has a more direct conflict of interest than that of non-academic physicians. Id. at 56; Marjorie Shultz, From Informed Consent to Patient Choice: A New Protected Interest, 95 Yale L.J. 219, 274 (1985). For a physician-researcher, like Dr. Golde, whose research focuses not on clinical treatment, but on cells and tissues removed from the patient’s body, the conflict of interest is at its greatest. Dr. Golde’s interest in John Moore was twofold. Moore was a patient with a life-threatening medical condition. Moore was also a

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source of biologically unique cells that offered opportunities for research and for commercial enterprise. Dr. Golde’s situation is not unique. These activities occurred at a critical juncture of biomedicine and its role as an economic enterprise. Amici remind us that not only is the biotechnology industry an important commercial sector in the life of the state, but also that the issues this case raises have implications for the people whose bodies and health are at stake. Id. at 6; Amicus Curiae Br. of the Indus. Biotechnology Ass’n, at 4. Drs. Golde and Quan sought use of Moore’s cells during an exciting period in the science of cell culture. By the mid-seventies, researchers could create cell lines to produce substances useful for both research and therapy. The 1970s also saw the rise of recombinant DNA technology. Martin Kenney, Bio-technology: The University-Industrial Complex 23 (1986). Commercial ventures formed to capitalize on genetic engineering and recombinant DNA technology and launched the nascent biotechnology industry. Congress responded to the push for commercialization of health and bioscience by enacting the Bayh-Dole Act in 1980. Pub. L. 96–517, 94 Stat. 3015 (1980). The Act was intended to incentivize commercialization of federally funded research. In part, Bayh-Dole authorized universities to retain patent rights to federally funded research, to pursue university-industry partnerships for commercialization of inventions, and to share royalties with the inventors. The Regents, as noted, submitted a patent application on the Mo cell line shortly after Congress enacted Bayh-Dole. Over the next two years, the University of California formed industry partnerships with other defendants in this case. The Regents’ use of university-industry partnership agreements was far from unique. In fact, “[t]he most striking institution to come out of this transformation is the startup company formed by entrepreneurs and university professors and funded by venture capital.” Kenney, supra, at 4. Living cells or life itself are both the raw materials and machinery of the biotechnology industry. Doctors provide direct access to patient cells and tissues. They may serve as conduits between patient and researcher. Or, like Dr. Golde, they may use their own patients as sources of materials for their own research. A study of medical schools found an overall 300 percent increase in patents with origins in patient tissues or fluids from 1975–1979 to 1980–1984. Alan Otten, Researchers’ Use of Blood, Bodily Tissues Raises Questions About Sharing Profits, Wall Street J., Jan. 29, 1986. Other biomedical activities dependent on human cell and tissue use may create conflicts of interest for participating physicians or researchers. Some fertility therapies, for example, use reproductive cells – eggs or sperm – from one person to achieve pregnancy in another. A doctor who retrieves eggs from one woman for

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another patient’s use has a duty of care to each patient. Yet, those duties may be in tension with each other. In response, the Ethics Committee of the American Fertility Society has called for attention to the particular risks to donors. See The Ethics Committee of the American Fertility Society, Ethical Considerations of the New Reproductive Technologies, 46 Fertility & Sterility, Supp. 1, 448 (1986). The rising demand for human cells and tissues for use in research and therapy means direct conflicts of interest will become more common. Defendants emphasize the need for access to human tissue for research. They assert that the knowledge research yields will benefit the public. History cautions against accepting general claims of public good, for two reasons. First and foremost, putting the needs of a generalized public over the interests of a few often rests on devaluation of the humanity of the few. Even if it does not, it results in devaluation of the individual vis-à-vis some notion of the public good. Second, claims of public good with respect to research are claims of future good, and are, therefore, speculative at best. In part, the question before us is who mediates access – those who desire access or those whose bodies are the source of the raw materials? The conflicts of interest on the research side point to heightened need for patient rights and protections. While this might impede the flow of cells and tissues from individuals to research, concerns about self-determination and the risks of exploitation arising from demand and conflicts of interest justify addressing those concerns.

B 1 As John Moore’s physician, Dr. Golde had a duty to disclose the information a reasonable patient would need to decide whether to undergo the recommended splenectomy and/or the procedures that followed. As an academic physician, Dr. Golde may have felt the pull of other aspects of his career, including research. He did, for example, publish several articles on his research on Moore’s cells and the development and use of the Mo cell line. See, for example, David W. Golde, SG Quan, & MJ Cline, Human Tlymphocyte Cell Line Producing Colony-stimulating Activity, 52 Blood 1968 (1978). Generally, the law interposes the duty to disclose to enable patients to weigh the potential effects of physician conflicts of interest on physician advice and treatment.

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Yet, Dr. Golde had a more troubling conflict of interest. Moore was Golde’s patient and a potential source of very valuable cells and tissues. The situation raises two questions. First, should the duty to disclose include a duty to disclose the specific sources of Golde’s conflict of interest – his intent to use Moore’s cells and tissues for research and the potential commercial value they might have? The physician should describe the intended and potential use of the patient’s cells and tissues post-surgery, the potential commercialization of the cells and tissues, and alternatives to undergoing treatment by that physician. It is well-established that physicians should describe required information in language that allows the patient to comprehend the implications, in a time frame that allows the patient to ask clarifying questions, under noncoercive circumstances, so that the patient can fully consider the decision(s) before consenting or refusing to undergo any procedure. W.M. Moldoff, Annotation, Malpractice: Physician’s duty to inform patient of nature and hazards of disease or treatment, 79 A.L.R.2d 1028 (1961); see also Jay Katz, The Silent World of Doctor and Patient 122 (1984). We emphasize these criteria to highlight the point that generalized statements about conflicts of interest and their sources through boilerplate language or any means that undercut patient self-determination will not affect informed consent. In this case, defendant Golde hid from Moore not only the defendants’ research interests in Moore’s cells and tissues, but also the fact that Moore was biologically unique. Moore’s biological uniqueness made him more vulnerable to exploitation. Golde’s obfuscation of this fact precluded Moore from the opportunity to evaluate the many extractions he underwent. The duty to disclose must include information, such as the patient’s biological uniqueness, that makes a patient more attractive as a source of bodily materials for research and commercial use. Those disclosures might have enabled Moore to seek treatment from another provider or to consent to the splenectomy, but not to subsequent procedures. The fact that Golde had non-therapeutic reasons for recommending surgery and the multiple trips from Washington to Los Angeles for subsequent cell and tissue extractions suggest that Golde’s motives were not entirely in the patient’s best interests. Thus, disclosure of Golde’s nontherapeutic interests in Moore’s cells and tissues, and hence, in the recommended procedures, should have been made to Moore. The second question is whether Golde’s disclosure of his research interest in Moore’s tissues and the possibility of commercial profit would provide Moore with adequate protection of his interests. As stated, Moore might have responded to that information by seeking treatment from another physician, or by agreeing to undergo the splenectomy but not the subsequent procedures. It

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is also possible, given the incentives, that, despite the disclosure requirement, a physician-researcher might disclose his own interests in ways that minimize or misstate their significance. Or, as it happened, Golde might not have disclosed his interests at all. A physician-researcher who seeks to treat the patient and use the patient as a source of research materials has a conflict that is difficult to reconcile with the duty of loyalty. At some point, a fiduciary’s conflict of interest may become so great that the conflict can only be mitigated by avoidance. There are at least two ways for a physician-researcher to avoid a conflict of interest. First, the physician-researcher could delegate the informed consent process to a third party. This might reduce the risk of inaccurate or misstated disclosure. Removing the physician from the interaction may also reduce the patient’s perception of pressure to consent. In some cases, however, third-party informed consent may not be desirable. For example, a third party may not be able to answer patient questions. In addition, a third party acting under direction or influence of the fiduciary may minimize or misstate the information. If third-party informed consent is not feasible, then the preferable way to protect patient self-determination is strict avoidance of the conflict. The fiduciary must not ask the patient to provide tissue, or the fiduciary must transfer the patient to another provider. In other words, the fiduciary with an irreconcilable conflict must choose a role: physician or researcher. This is not unprecedented. Ethics rules governing human organ transplantation prohibit transplant surgeons from treating those who provide the organs to be transplanted. See, for example, Delford L. Stickel, Organ Transplantation in Medical and Legal Perspectives, 32 L. & Contemp. Probs. 597619, 611 (1967) (“no one on the transplant team has any authority in the care of the donor before his death.”). This effectively avoids a conflict of loyalties to two different patients. Strict avoidance for physician-researchers eliminates a conflict of interest created by dual roles with respect to one patient. 2 Traditionally, researchers are not treated at law as fiduciaries of research subjects. However, the law regulating human subject research does put a heavy onus of protecting human research subjects on investigators and on research institutions. Those obligations include ensuring that benefits of research outweigh risks to the subjects before proceeding with research, and the duty to disclose and assure informed consent to participation. 45 C.F.R. 46, Subpart A – Basic HHS Policy for the Protection of Human Research Subjects (1981). The federal regulations draw from the ethical framework that The National Commission for the Protection of Human

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Subjects of Biomedical and Behavioral Research developed in response to the Tuskegee Syphilis Study and other experiments conducted in violation of patient autonomy, physical and mental well-being. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, Office of the Secretary, The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Apr. 18, 1979. Two points suggest that researchers have no duty to protect patients like John Moore. First, the research conducted by Drs. Golde and Quan was not “human subject research” under federal rules. Therefore, the federal regulations for the protection of human subjects did not apply. In addition, unlike Dr. Golde, many researchers who use human cells and tissues may have little or no opportunity to directly interact with the people who provide them. Yet, that would leave researchers such as Dr. Quan free to use human tissues even if the tissues were obtained without consent, forcibly or otherwise in violation of human rights. This outcome is inconsistent with research ethics. Prevailing research regulations and bioethical principles treat the contexts in which humans are used and data is collected as ethical preconditions. For example, many consider the contemporary use of research data obtained by Nazi doctors who experimented on Jews and others imprisoned in death camps to be ethically abhorrent. Isabel Wilkerson, Nazi Scientists and Ethics of Today, N.Y. Times, May 21, 1989. This view is somewhat controversial. Some argue that the data should be used for whatever good it can achieve. However, the prevailing view regards the origins of the data – the Holocaust – as so tainted as to also taint its use. Id. This example is in no way intended to compare Drs. Golde, Quan, or any researchers who create human cell lines to the Nazi doctors. It does, however, show that, under the prevailing view, the origins of human tissue or data, and how they were obtained, matter. Existing law supports the prevailing view. In 1988, “the Environmental Protection Agency banned the use of Nazi research in a study on phosphene gas conducted for the agency.” Id. We find that researchers who use human cells and tissues have a fiduciary obligation to inquire about how cells and tissues were provided and to obtain information assuring that research materials were provided in compliance with law and ethics. This duty supports patient rights by adding to those with a stake in maintaining the rights. It also ensures research integrity in this state. The duty rests on the premise that research materials procured by violating human rights or in dereliction of important ethical principles are tainted. A failure to use due diligence in determining the legal and ethical origins of human materials used in research violates the duty.

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3 Research institutions, including academic research institutions like UCLA, play important roles in oversight and accountability of research conducted under their auspices. First, academic research institutions are often the legally designated recipient of monies for funded research. Typically, the funding agency or foundation transmits research monies through the research institution to the investigator. In addition, the research institution itself provides resources needed to conduct research. Therefore, the research institution has not only a financial stake, but also a contractual relationship to the research as a fundee and/or funder. Second, research institutions at which federally funded human subject research is conducted have established administrative and procedural structures to comply with human subject protection requirements. This includes establishing an institutional review board, which reviews research protocols for the purpose of protecting human subjects. While the research at issue was not regulated by the federal rules, the institution has the capacity to provide oversight and accountability of research that affects humans. In this case, the research that resulted in the Mo cell line was funded by the US Public Health Service. Unless UCLA played no role in supporting the research, or procuring, receiving, or administering those funds, UCLA had a stake in the research at issue. The research Drs. Golde and Quan conducted on John Moore’s cells was conducted under UCLA’s auspices. Drs. Golde and Quan were UCLA employees. In addition, in this case, John Moore was a patient who received care at UCLA Medical Center. While John Moore did not have a right to informed consent vis-à-vis the University of California, the University of California as a research institution had a fiduciary duty to John Moore. The research institution’s duty, like that of researcher-physicians, can be situated on a sliding scale. The research institution could, at a minimum, provide conflict of interest and informed consent assessment and oversight. Yet, more might be merited in some circumstances. Several factors indicate that UCLA, and hence, the Regents, had a heightened duty. One consideration is whether the risk of exploitation is significant. That might arise from the physician-researcher’s conflict of interest and Moore’s biological uniqueness. In other cases, it might arise from the use of patients or subjects who are members of vulnerable or marginalized communities. Such conflicts place a burden on the institution to take steps to provide oversight or to mitigate the risks arising from the conflict. In addition, the fact that UCLA itself had a conflict of interest should be taken into consideration. Under the Bayh-Dole Act, the University of California was able

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to retain rights to the Mo cell line patent filed in 1981. In addition, the University had significant commercial interests arising from the arrangements with defendants Genetics Institute and Sandoz. The institution’s own conflicts of interest might prompt serious consideration of using third-party oversight mechanisms. Institutional review boards, ethics committees, and patient advocates provide examples of third-party mechanisms used to protect research subjects and patients in other situations. While this analysis is not limited to public universities, it seems timely to note the special role and status the University of California enjoys in this state. The California Constitution describes the University of California as a public trust. Cal. Const., Art. IX, Sec. 9(a) (amended Nov. 2, 1976 by Prop. 4. Res. Ch. 35, 1976). In light of the increasing importance of commercialization in university research activities, the University of California’s public trust is worth remembering. 4 Commercial partners, such as defendants Genetics Institute and Sandoz, that contribute funding and commercialization opportunities, do not have the opportunity to interact directly with patients or subjects. Yet, they benefit from the use of cells and tissues provided for research and commercialization. The bodily substances obtained from patients and research subjects serve as the raw materials of research, product development, and manufacturing. See Statement of Dr. George Rathman, President and Chief Executive Officer, Amgen Corp., Thousand Oaks, CA, The Use of Biological Materials in the Development of Biomedical Products, Hearing before the Subcommittee on Investigations and Oversight of the Committee on Science and Technology, House of Representatives, 99th Cong. 4446 (1985). In the absence of a duty, they would be free to use human tissues obtained in violation of law, ethics, and human rights. Commercial partners, therefore, have a duty of due diligence to determine whether the human material that provides the basis for the research and product development was obtained legally, without violation of ethics and human rights.

C Moore’s claim for breach of fiduciary duty and informed consent arises from the procedures performed directly on Moore’s body. His complaint also sets out a number of claims that arise from the use and commercialization of his cells and tissues after they were removed from his body. The latter claims raise the question, under what circumstances does someone other than one’s self

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have dispositional control over one’s body? Moore’s property claims express outrage over the exploitation and denial of decision-making authority over his body and his person, as well as of denial of commercial opportunity. Moore claimed a sense of betrayal. Statement of John L. Moore, Hearing Before the Subcommittee on Investigation and Oversight, of the Committee on Science and Technology Hearings on the Use of Human Patient Materials in the Development of Commercial Biomedical Products, H.R., 99th Cong. 277 (1985). This analysis proceeds from the point that there are two dispositional rights at issue: the right to use and the right to commercialize one’s cells and tissues. 1 It is established that one has property in one’s own body. The court of appeals acknowledged, “[t]the evolution of civilization from slavery to freedom, from regarding people as chattels to recognition of the individual dignity of each person, necessitates prudence in attributing qualities of property to human tissues. There is, however, a dramatic difference between having property rights in one’s own body and being the property of another.” Moore, 249 Cal. Rptr. at 504. Having property rights in one’s own body is not a recognition of property in the narrow sense in which the thing (body) is commodity. Rather, the principle of recognizing property in one’s own body relies on property concepts that are congruent with bodily integrity and decisional autonomy to define relations between the person and others with respect to the person. Claiming property rights in one’s own body is a way of describing rights in one’s physical self as against the world. Self-ownership and authority over one’s own body provides a means of protecting oneself from exploitation and involuntary commodification by others. A wide range of cases and doctrines demonstrate law’s recognition of rights of dominion over one’s own body. In Bouvia v. Superior Court, 179 Cal. App. 3d 1127 (1986), the court located dominion in one’s own body in the right to refuse medical treatment, a right that is part and parcel of informed consent. The Bouvia opinion set out the core principle at issue by quoting Cobbs v. Grant, a seminal informed consent case. “[A] person of adult years and in sound mind has the right, in the exercise of control over his own body, to determine whether or not to submit to lawful medical treatment.” 502 P.2d at 9. California statutes and cases have recognized exclusive rights of possession, control, and disposition over the deceased’s body in next of kin. This court, in O’Donnell v. Slack, 55 P. 906 (Cal. 1899), explained that these rights were by law “protected, and for a violation of which [next of kin] are entitled to indemnification.” Id. at 907; see also, Cohen v. Groman Mortuary, Inc., 231

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Cal. App. 2d 1 (Ct. App. 1964). Courts have recognized a duty in others to refrain from retaining parts of the deceased’s body. In Palmquist v. Standard Acc. Ins., 3 F. Supp. 358 (S.D. Cal. 1933), the court denied defendant’s motion for judgment notwithstanding a verdict in favor of plaintiff. Id. at 359–360. The plaintiff had received a jury verdict against physicians who performed an autopsy on her husband’s body and retained the heart, brain, and one kidney without her authorization. The court noted, “[t]he unauthorized removal of a portion of the body by one authorized to examine it, and his refusal to return such portion is actionable.” Id. at 360. While health and safety concerns justify some restriction on dispositional control of one’s own excised tissues, those concerns do not obviate the rights of control and exclusion that are part and parcel of property rights. Abortion rights cases elucidate how the right of control over one’s own body provides protection against dominion by others, including the state. In People v. Belous, 458 P.2d 194 (Cal. 1969) and Committee to Defend Reproductive Rights v. Myers, 625 P.2d 779, 792 (Cal. 1981), we held that the right of privacy in the California Constitution encompasses the choice between childbirth and abortion. We recognized the abortion decision as a constitutional right because it implicates a “fundamental interest in life and health” and it “is essential to her ability to retain personal control over her own body.” Comm. to Defend Reproductive Rts., at 625 P.2d at 792. 2 Defendants argue that John Moore lost all interest in his own cells and tissues once they were excised from his body. That logic assumes that severance transforms one’s body parts into something independent from the person. Moreover, defendants’ logic leads to the conclusion that everyone but the person who provided the tissue might acquire a property interest in it. Treating excised tissue as wholly independent from the person is inconsistent with rules for posthumous organ donation. Law establishes a hierarchy of decision-makers and standards of decision-making for disposition of organs and other tissues after death. California Anatomical Gift Act, Cal. Health & Safety Code Ch. 3.5 (1987). The hierarchy favors dispositional control by the decedent. Id. For example, if the decedent has expressed an intent to make her organs available for transplantation, the law protects the decedent’s wishes over those of surviving family members who disagree. If the decedent has not expressed a preference for donating organs and other tissues after death, then close family members may make that choice based first and foremost on the decedent’s own values. Rather than treating body parts as independent of the decedent, the law respects the decedent’s

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interest and that of her family in the body, after death. Similarly, assuming that patients have no interest in excised cells is inconsistent with law recognizing family members’ rights of disposition and control in decedents’ bodies and body parts. If a family member has dispositional rights after death, then a person should have a property interest in tissues removed from her body during life. For many living persons, cells, tissues, organs, and other body parts continue to have meaning after excision. Religious belief, cultural practice, social norms, and life experience might shape that meaning. Excised body parts might have symbolic or ceremonial value to a person or her community. Use of excised cells and tissue without patient authorization may violate the patient’s beliefs and values. Law recognizes those interests. As discussed, rules requiring affirmative consent for organ donation respect the range of reasons, religious or otherwise, that people donate or refuse to donate. Professional rules also recognize the interest and concomitant authority patients have over excised cells. A report by the American Fertility Society Ethics Committee addressed donation of in vitro pre-embryos decisionmaking authority over in vitro pre-embryos. The report states, “decisionmaking authority regarding pre-embryos should reside with the persons who have provided the gametes.” Report of the Ethics Committee of The American Fertility Society, 53 J. Amer. Fertility Soc’y 345–355 (1990). These laws and standards protect the interest that individuals have in determining use of cells and tissues removed their bodies by enabling the individual to decide, based on her own values and sense of self, how those cells and tissues should be used. Dispositional control is not unlimited. Indeed, Professor Rose-Ackerman has observed that many forms of property have restrictions on their use. Susan Rose-Ackerman, Inalienability and the Theory of Property Rights, 88 Colum. L. Rev. 931 (1985). As noted, law restricts dispositional control over excised cells and tissues, often for health and safety reasons. In addition, some individuals attach no meaning to tissue excised from their bodies. Those points, however, do not obviate the importance of protecting an individual’s interests in her own excised tissues. That right falls within the scope of an individual’s right of self-ownership or dominion over one’s own body. The fact that cells and tissues carry personal information enhances the importance of the right. While informational privacy is not central to Moore’s claims, the informational privacy concerns are among the interests that give rise to the individual’s need for dispositional control over excised body parts. As genetic science progresses and the tools for extracting genetic information from organic matter improve, the significance of this interest may increase.

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3 Existing law recognizes the right to use or transfer control over excised cells and tissue. Thus, a person has the right to alienate her own cells and tissues, subject to health and safety and other legal restrictions. Dispositional control includes the authority to transfer for a specific use and to refuse other uses, again, within legal limits. For example, one could authorize use of one’s own excised tissue for research purposes, but not for commercialization. The forms offered to John Moore acknowledge the distinction. The form he signed on April 11, 1983 indicated his consent to use his cells and tissue for research. He had been told that Dr. Golde was engaged in research on hairy cell leukemia. The form he was encouraged to sign on September 20, 1983 would have also authorized use of his cells and tissues for commercialization. Moore refused to sign that form. Now defendants argue that Moore had no property interest in or authority over his own cells and tissues. Defendants’ argument would effectively make excised human cells and tissues into ferae nature, available for capture and use by others. This would produce an absurd result. Moore would have no property interest in or control over his own tissues, but others would have. Others could acquire exclusive rights of dispositional control as well as the right to commercialize the cells and tissues without regard to Moore’s intent, beliefs, and values. Even though defendants’ proposal would allow capture of excised tissue, the proposed rights would limit self-dominion in ways that curtail how individuals act on their beliefs and values, including protecting themselves from intrusion by others. It would also position patients and their personal information as sources of free raw materials for biomedical research and product development, and thus vulnerable to involuntary exploitation. Advances in biomedicine and laws such as the Bayh-Dole Act make such exploitation more likely. Recognizing that the property right in one’s own body includes the right to alienate (or not) and to determine the scope of use upon transfer would prevent this absurd result. Moreover, this is consistent with existing law and policy. Therefore, we hold that individuals have property rights in their own body, which extend to dispositional control over excised body parts, and that dispositional control includes the right to transfer cells and tissues, and to determine the scope of use. These property rights provide a basis for Moore’s property-based claims, including conversion. 4 Defendants argue that recognizing Moore’s property interests would impede research by raising its costs, and therefore reduce the public good that research

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produces. Amicus Curiae Br. of the Industrial Biotechnology Association 5–6. We accept that research produces valuable knowledge and acknowledge that it is possible that some patients would request payment in return for transferring tissue for research or rights to development tissue into a product line. Yet, defendants’ argument that recognizing Moore’s claim will raise the costs of research substantially enough to impede the production of knowledge and useful goods is speculative. Many might donate tissue for product development as a form of altruism, just as many consent to donate organs for transplantation. In fact, John Moore willingly signed the form authorizing use of his tissue for blood cancer research. In addition, while the public may benefit from therapies based on research and use of human cells and tissues, those products are not free. In fact, the Bayh-Dole Act seems to act as a double-edged sword. On the one hand, it authorizes research institutions to use patent rights to get research to market. In other words, the Act facilitates the translation of research to useful products. Yet, the partnership arrangements that Bayh-Dole encourages result in privatizing publicly funded research. Martin Kenney, Biotechnology: The University-Industrial Complex (1988). One aspect of commercialization arrangements, the patent process, encourages secrecy, thus thwarting the distribution of knowledge. Another aspect of commercialization, private funding, effectively narrows down the range of potential medical products. Commercial partners and venture capital investors choose the potential products that are most likely to be profitable. It is possible, if not likely, that opportunities to alleviate suffering are overlooked. Finally, in the increasingly expensive market for medical goods that biotechnology companies make, products are truly only available for those with robust insurance or significant disposable income. This reality counters the simple story that equates research with public good. Most patients are not biomedical researchers, experts at biotechnology companies, or doctors who provide therapies based on cells and tissues. In that light, recognizing property rights in one’s excised cells and tissue seems empty. Many patients may be unable to directly use and commercialize their own tissue. Yet, recognition that we have property-based dispositional control over one’s own excised cells and tissues does not require direct use or commercialization. Patients may transfer the rights to use and commercialize to researchers, academic research institutions, or biotechnology companies. In addition, recent history shows that patients have played an important participatory role in steering research agendas, improving patient access to lifesaving therapies, and directly contributing to breakthrough research. For example, the 1970 publication of a health manual by and for women, Women and Their Bodies, kicked off the women’s health movement. Boston Women’s

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Health Collective, Women and Their Bodies (1970). First published as a pamphlet, Women and Their Bodies (now titled, Our Bodies, Ourselves), provided information that enabled women to understand their own health and to challenge medical paternalism. Trudy K. Landwirth, The Women’s Health Movement, 12 The Serials Libr. 89 (1987). This played a role in breast cancer advocacy. Rosamond Campion challenged the then-standard use of radical mastectomy for all breast cancer diagnoses, and shared her experience in her book, The Invisible Worm. Rosamond Campion, The Invisible Worm: A Woman’s Right to Choose an Alternate to Radical Surgery (1972). The protest Campion helped start eventually changed medical practice. By the 1980s, advocates used not only awareness raising, but also developed a corps of lay experts to shape the breast cancer research agenda. Rose Kushner, Alternatives: New Developments in the War on Breast Cancer (1985). HIV/ AIDS used a wide range of strategies, including protest and advocacy, to change the FDA approval process. Activists pushed for accelerated drug approval. Randy Shilts, And the Band Played On (1987). The FDA responded in 1987 with regulations that established the Treatment Investigational New Drugs track. Id. This has enabled patients with severe illnesses, including HIV/AIDS, to access investigational drugs. An example closer to this case can be found in the story of Ted Slavin. Ted Slavin was born with hemophilia. After repeated exposure to the Hepatitis B virus from transfusions with unscreened blood, Slavin developed high levels of Hepatitis B antibodies. Baruch S. Blumberg, Irving Millman, W. Thomas London et al., Ted Slavin’s Blood and the Development of HBV Vaccine, in 312 NEJM 189 (1985); see also Baruch S. Blumberg, Hepatits B Virus and the Carrier Problem, 55 Social Rsch. 401, 404 (1988). He learned this in 1970, when he was screened for Hepatitis B. He used this knowledge and his blood in two ways. He sold his blood to commercial organizations. He later formed his own company, Essential Biologicals, to collect blood from people with rare or unique blood. In addition, Slavin donated his blood serum to the laboratory he thought best positioned to develop a vaccine. Id. In a tribute letter written after Ted Slavin’s 1984 death, the researchers stated, “[w]e used it in research on the radioimmunoassay test, tissue fluorescence techniques, the development of the vaccine against Hepatitis B virus, and the prevention of primary cancer of the liver.” See generally Blumberg et al., supra. These examples demonstrate that recognizing patient rights – and property rights in particular – is not the death of innovation. Nor will it undermine the public good in biomedical research. On the contrary, these examples show that protecting patient self-determination may facilitate innovation and ensure that the public good reflects patient interests in addition to investor interests.

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Recognizing ownership in oneself through property-based dispositional control affirms what patients, like Ted Slavin, have contributed. Protecting patient control continues important achievements in patient rights and participatory research. At bottom, “[p]roperty rights serve human values. They are recognized to that end and are limited by it.” State v. Shack, 277 A.2d 369, 372 (1971).

iv The decision of the court of appeal is affirmed. This case is remanded to the court of appeal, which shall direct the superior court to overrule Golde’s demurrers to the causes of action for breach of fiduciary duty and lack of informed consent; and overrule the demurrers of the Regents, Quan, Genetics Institute, and Sandoz.

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7 Commentary on Linton v. Commissioner of Health and Environment ruqaiijah yearby

background The Medicaid Act, a joint federal and state government program, requires states to: furnish (1) medical assistance on behalf of families with dependent children and of aged, blind, or disabled individuals, whose income and resources are insufficient to meet the costs of necessary medical services, and (2) rehabilitation and other services to help such families and individuals attain or retain capability for independence or self-care[.]1

A core objective of the Medicaid program is to serve the health and wellness needs of elderly, disabled, and low-income individuals. To receive federal funding for Medicaid, states must ensure that these objectives are being met. Health care facilities, such as nursing homes participating in Medicaid, must comply with numerous federal requirements, including providing the state with written assurances of compliance with Title VI of the Civil Rights Act of 1964,2 which prohibits the exclusion of racial minorities from health care services.3 In the 1970s and 1980s, most nursing homes tended to prioritize private-pay, predominately white, patients for admission to increase profits. States allowed nursing homes to limit Medicaid patients by certifying a limited number of their beds for Medicaid, which helped states control their Medicaid costs.4 1 2

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42 U.S.C. § 1396 (2014). David Barton Smith, Healthcare Divided: Race and Healing a Nation 100–102, 115–116 (1999). 42 U.S.C. § 2000d (2000) (“No person in the United States shall, on the ground of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance”). Smith, supra note 2, at 249, 253–255.

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Thus, as the costs for nursing home care continued to grow in the 1990s, nursing homes, with the help of states, tried to limit their admissions to private-pay patients, whose insurance rates could be twice as much as the Medicaid rates.5 When private-pay patients ran out of money and had to use Medicaid to pay for their stay; then, the nursing home would let them stay in the facility by certifying their bed as a Medicaid bed. As a result, Medicaid, originally a “program designed to care for the poor,” was converted “into one that provided a catastrophic long-term care insurance policy for the middle class.”6 These policies also disproportionately harmed racial minorities. According to Professor Barton Smith, as long as nursing homes made a “good faith” effort by marketing with racially nondiscriminatory language and submitting written assurances of nondiscrimination, states certified nursing homes to participate in Medicaid without meaningful investigation of the veracity of these assurances.7 Although states had authority to regulate nursing homes through licensing and Medicaid certification, they gave nursing homes full discretion in admission decisions to keep costs down.8 Some nursing homes used this discretion to implement policies that denied or delayed admission to Medicaid patients who were not in a position to provide private payment, especially for racial minority Medicaid patients,9 in violation of Title VI and the Medicaid Act.10 This was the case in many states, including in Tennessee. Tennessee had a fragmented system of long-term care where private nursing homes served rich whites, while public nursing homes served poor whites and unlicensed boarding homes served racial minorities.11 More specifically, there was “a statewide system of licensed nursing homes, [where] 70 percent funded

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Id. at 254. Id. Id. at 236; David Barton Smith, The Racial Integration of Health Facilities, 18 J. Health Pol. Pol’y & L. 851, 857–861 (1993). See US Comm’n on Civil Rights, The Health Care Challenge: Acknowledging Inequity, Confronting Discrimination, and Ensuring Equality: The Role of Governmental and Private Health Care Programs and Initiatives 64 (1999); Smith, supra note 2, at 87. See Linton ex rel. Arnold v. Comm’r Health & Env’t, Tennessee (Linton I), 779 F. Supp. 925, 927 (M.D. Tenn. 1990) (ruling that Tennessee’s bed certification policies fostered racial discrimination and delays in admission to nursing homes in violation of Title VI and Medicaid and ordered the state to change its policies). See David Falcone & Robert Broyles, Access to Long-Term Care: Race as a Barrier, 19 J. Health Pol. Pol’y & L. 583, 588–592 (1994); William Weissert & Cynthia Cready, Determinants of Hospital-to-Nursing Home Placement Delays: A Pilot Study, 23 Health Servs. Rsch. 619, 632, 641–642 (1988). Linton I, 779 F. Supp. at 932.

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by the Medicaid program, serves whites; while [African Americans] are relegated to substandard boarding homes which receive no Medicaid subsidies.”12 This system was due to Tennessee’s decision to control Medicaid costs by permitting certified nursing homes’ use of a limited-bed policy for admissions. Under this policy, nursing homes gave admission preferences to private-pay patients by reserving beds for their exclusive use and making beds unavailable to Medicaid patients.13 As a result of this policy, nursing homes had the power, which they used, to determine whom to admit based on profit and sometimes race. Unlike other states, however, Tennessee nursing homes also used this policy to involuntarily transfer any patient who had already been admitted to the facility because: (1) the patient was initially private-pay, but then switched to Medicaid or (2) the patient’s level of care dropped, so that they no longer needed skilled care (covered at a higher Medicaid rate than intermediate care). This practice benefited nursing homes by ensuring access to private-pay patients, while harming poor Medicaid patients, especially racial minority Medicaid patients, who lacked access to medically necessary nursing home care. Linton v. Tennessee14 was a class action suit brought by plaintiffs who were eligible for Medicaid (or would be eligible in the future) and were seeking nursing home care in Tennessee. The named plaintiff was Mildred Lea Linton, a white Medicaid enrollee with rheumatoid arthritis who resided in a licensed nursing home. When Medicaid officials determined that Ms. Linton no longer needed high-level care and should be moved to an intermediate care bed, the facility informed her that there was a long waiting list for their limited number of Medicaid-certified, intermediate care beds. Although the facility had eighty-seven intermediate care beds, they had taken advantage of Tennessee’s limited-bed policy to certify fewer than half of them for Medicaid. Mrs. Belle Carney, an African American woman with Alzheimer’s disease, sought placement in a licensed nursing home, but as a Medicaid enrollee, none was available to her. Mrs. Carney was named as a plaintiff-intervenor. The plaintiffs challenged Tennessee’s limited-bed policy under federal Medicaid requirements, including standards governing certification of a “distinct part” of a facility as available to Medicaid-eligible residents. They also challenged the policy under Title VI’s prohibition on racial discrimination in programs that receive federal financial assistance,

12 13 14

Id. at 932. Id. 779 F. Supp. 925 (M.D. Tenn. 1990), aff’d 65 F.3d 508 (6th Cir. 1995), cert. denied 116 St. Ct. 1546 (1996).

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arguing that the policy resulted in a disparate impact on African American Medicaid enrollees.

original opinion District Court Opinion In the initial Linton case, the district court ruled for the plaintiffs, finding that Tennessee’s policies giving nursing homes total discretion to certify a limited number of beds for Medicaid-eligible residents delayed access to necessary medical services and thereby violated the federal Medicaid Act’s “reasonable promptness” requirement, among other provisions. The court further held that Tennessee’s limited-bed policy violated Title VI of the Civil Rights Act of 1964 because it disproportionately impacted African American Medicaid patients’ access to nursing homes.15 As a result of this case, Tennessee submitted a proposed remedial plan to the district court. The portion of the plan aimed at remedying the state’s Medicaid Act violations included the following provisions: First, the remedial plan required “full certification.”16 The plan “required Medicaid providers to certify all available, licensed nursing home beds within their facilities . . . and to admit residents on a first-come, first-serve basis.”17 Second, the plan “prohibit[ed] involuntary transfer or discharge [of residents] based upon source of payment.”18 Third, a “lock-in” provision required “[p]roviders who chose to withdraw from the system . . . to retain current Medicaid patients and comply with Medicaid requirements as to such patients.”19 Fourth, a “lock-out” provision discouraged nursing homes from withdrawing from Medicaid participation by holding that “[p]roviders who withdrew would be excluded from Medicaid participation for two years after withdrawal.”20 The portion of the remedial plan addressing Title VI violations “included draft rules for Title VI civil rights compliance and enforcement, added staff to Tennessee’s Office of Civil Rights Compliance, and incorporated by reference the measures adopted in [the Medicaid compliance portion] of the plan.”21

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Id. at 936. Linton v. Tennessee (Linton II), 65 F.3d 508, 512 (6th Cir. 1995). Id. (emphasis added). Id. Id. Id. Id.

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The district court adopted the state’s proposed plan without any changes. At that point, five nursing homes licensed in Tennessee filed a motion to intervene for the purposes of appeal, arguing that the district court erroneously found that there were Title VI violations, and thus the remedial plan was invalid. In addition, the Intervenor-Defendants argued that the remedial plan did not conform with the Medicaid Act and that the lock-in and lock-out provisions impaired their contractual relationship with the state, in violation of the US Constitution. The US Court of Appeals for the Sixth Circuit heard this case, which is referred to as Linton II.22

Circuit Court Opinion The Sixth Circuit’s unanimous decision in Linton II rejected the nursing homes’ challenge to the remedial plan and upheld the remedial plan in its entirety. Its decision was based only on the requirements of federal Medicaid law and the adequacy of Medicaid reimbursement rates that the state paid to the nursing homes. The court explicitly decided not to address the issues raised by the nursing homes regarding Title VI, on the grounds that “[n]one of the remedies [that the nursing homes challenged on appeal were] predicated on a finding of a Title VI violation, alone.” When the Sixth Circuit was deciding Linton II, there was ample evidence of the disparate impact discrimination because the policies of the state and the actions of the nursing homes disproportionately harmed racial minority patients and were not justified by a bona fide interest. Thus, they violated the purpose and requirements of Title VI. Nevertheless, the Sixth Circuit’s opinion in Linton II disregarded this evidence, instead concentrating on the remedial plan’s conformance with Medicaid law and “neutral” application of contract law to the nursing homes’ argument that the challenged provisions of the remedial plan impaired their contractual relationship with the state.

feminist judgment The feminist concurrence by Professor Gwendolyn Roberts Majette, writing as Judge Majette of the US Court of Appeals for the Sixth Circuit, discusses the Title VI claims, finding that Tennessee’s limited-bed certification policy had an unjustified disparate impact on racial minorities’ access to nursing home care. 22

Id.

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Unlike the original opinion, the Majette concurrence adopts an intersectional feminist approach by centering the experience of Mrs. Carney, who intervened in the lawsuit because she was denied access to a Medicaid-certified bed. Ms. Linton, a white Medicaid patient who was the named plaintiff in the suit, was able to obtain a bed in a nursing home, yet the nursing home was threatening to discharge her. However, Mrs. Carney, a disabled, African American, elderly Medicaid patient, was denied a Medicaid-certified nursing home bed for two years and, thus, was relegated to unlicensed boarding homes and emergency room care. Mrs. Carney suffered serious harm due to the state’s policy permitting nursing homes to refuse her based on her status as a Medicaid enrollee. Her experience was distinct from Ms. Linton’s in ways that are important to the feminist concurrence’s reasoning. The concurrence highlights the fact that there was a prima facie case of disparate impact discrimination due to the “abundance of testimony from individuals who sought admission for their family members of color and were turned away.” Majette’s concurring opinion makes it clear that it is not enough for nursing homes to certify all beds as available for Medicaid patients, if nursing homes are not also going to be required to provide racial minorities with equal access to those beds. Hence, while the original opinion may have fixed the problems facing Ms. Linton by prohibiting her nursing home from discharging her, it leaves Mrs. Carney and other elderly African American Medicaid patients relegated to unlicensed boarding homes. The concurrence is further notable because it holds that the plaintiffs established a prima facie case of disparate impact discrimination based on testimony, reports, and statistics, which Tennessee did not rebut. Specifically, the concurrence finds the testimony of Ms. Beverly Bass, the Director of Title VI Compliance for the Tennessee Department of Health and Environment, that, “elderly blacks face challenges to accessing nursing home care statewide,” yet they “only comprised 15.4% of the [Tennessee] nursing home population, despite the fact that they comprised 39.4% of the Medicaid population,” showed that the limited-bed policy had a disparate impact on African Americans. Additionally, using this statistical evidence and the testimony of many others who were denied admission to nursing homes, the concurrence finds that Tennessee’s assertions that the racial differences in nursing home residency are due to self-selection are not legitimate. The concurrence is significant because it holds that the state has violated the requirements of Title VI by allowing nursing homes to deny African American’s equal access to nursing home care. Yet, the concurrence does not address how the actions of the nursing homes were also examples of disparate impact discrimination, as discussed below.

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discussion Majette’s concurring opinion in Linton expressly relies on feminist legal theory by citing Kimberlé Williams Crenshaw23 and Martha Albertson Fineman.24 After highlighting that the case concerns the state’s “willingness to protect the health and well-being of all its citizens, especially those that are vulnerable because of the intersection of their age, gender, race, and class,” Majette goes on to explain how Crenshaw’s theory of intersectionality counsels against “treating a status as mutually exclusive for analytical purposes,” and instead calls on the courts to “consider the greater sum of the intersectional experience.” Majette notes that the Linton decision “raises several societal concerns about aging that are captured by Professor Martha Fineman’s theory on the universality of dependency.” She adopts Fineman’s argument that valuing caretaking requires “that the market and government should bear their fair share of responsibility.” She concludes that “Fineman’s arguments . . . magnify the importance of the Medicaid program in providing funding to care for the health of poor elderly people which includes the provision of nursing home care.” These feminist theories buttress Majette’s conclusion that “for the government (federal and state) and the market (nursing home facilities) to assume their fair share of responsibility, they must comply with the dictates of the Medicaid program and Title VI.” Majette’s feminist concurrence adds to the original opinion by reaffirming findings of the district court that there was disparate impact discrimination and by explicitly relying on feminist legal theories to do so. However, it does not change the result of the original opinion. Majette’s concurrence also does not address the actions of the nursing homes nor does it require the state to undertake additional actions to eradicate the disparate impact discrimination that Mrs. Carney experienced. Additionally, although the feminist concurrence balances out the original opinion’s focus on the relationship between the state and the nursing homes by centering the experiences and needs of the plaintiffs, Majette does not directly respond to the original opinion’s reliance on contract rights to justify the nursing homes’ practices. Majette misses an opportunity to respond to the original opinion’s reliance on freedom of contract by asserting feminist arguments that undermine its

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Kimberlé Williams Crenshaw, Demarginalizing the Intersection of Race and Sex, A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory, and Antiracist Politics, 1989 U. Chi. Legal F. 139 (1989). Martha Albertson Fineman, The Neutered Mother, The Sexual Family and Other Twentieth Century Tragedies 161–164, 230–236 (1995).

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assumptions. As noted by feminist legal scholars, contract law often reinforces the power structures of American society, leaving those without power, such as the poor, susceptible to mistreatment.25 This was certainly true in the Linton opinion. The freedom of contract defense at issue in the Linton cases ignored the history of disparate impact discrimination in nursing homes and was inconsistent with Medicaid requirements. Disparate impact discrimination, often illustrated by data and statistical analysis, is defined as unintentional discrimination that has a disproportionate impact on a protected group, such as racial minorities.26 The Tennessee policy allowing nursing homes to certify Medicaid beds at their discretion, disproportionately harmed racial minorities because nursing homes would not certify beds for African Americans, and as a result, African American elderly Medicaid patients were often relegated to unlicensed boarding homes.27 This history of discrimination is important to understanding why the nursing homes’ claims about suffering harm from the remedial plan were unpersuasive. The “first come, first served” and “lock-in” requirements in the remedial plan mandate that Medicaid patients are admitted on a “first come, first served basis” without regard to payment status and are allowed to continue to reside in the facility even if their payment status changes or the nursing home stops participating in the Medicaid program. The nursing homes argued that their choice to certify beds to favor private-pay patients – and retain the option to kick out Medicaid patients residing in the facility – was a “neutral” business justification consistent with their freedom of contract.28 However, the nursing homes’ choices were not neutral with regard to Medicaid status or with regard to race. As discussed in the background section of this commentary and in the district court opinion, nursing homes, with the assistance of Tennessee, maintained a dual system of nursing home care for the rich and the poor as well as for white and African American patients.29 Nursing homes limited Medicaid patients’ access to care to increase profits and often to prevent

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See, e.g., Debora Threedy, Feminists & Contract Doctrine, 32 Ind. L. Rev. 1247, 1248–1249 (1999); see also Frances E. Olsen, The Sex of Law, in The Politics of Law: A Progressive 453 (David Kairys ed., 2d ed. 1990); Linda Hirshman, Foreword: The Waning of the Middle Ages, 69 Chi.-Kent L. Rev. 293 (1993). See Linton ex rel. Arnold v. Comm’r Health & Env’t, Tennessee (Linton I), 779 F. Supp. 925, 934–936 (M.D. Tenn. 1990). Id. at 932, 934–936. Linton v. Tennessee (Linton II), 65 F.3d 508, 515–516 (6th Cir. 1995). Linton I, 779 F. Supp. at 932.

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admission of racial minorities,30 in contravention of the purposes of Medicaid and Title VI. Thus, although the original opinion upheld the remedial plan that addressed nursing home admission practices, it ignored the fact that the nursing homes’ choices were racially discriminatory, not “neutral.” The nursing homes’ business arguments also violated the conditions (akin to contractual requirements) of participating in Medicaid, which the original opinion overlooked in its discussion regarding freedom of contract. In its discussion of the impairment of contract claim, the Linton II circuit court opinion emphasized the nursing homes’ contractual rights to the detriment of the Medicaid patients’ rights to reasonably prompt care. Specifically, the original opinion focused on enforcing the Medicaid contract to ensure that the nursing homes were not suffering substantial harm, while ignoring the fact that nursing homes were causing African American Medicaid patients substantial harm through discriminatory admission policies, which violate the Medicaid conditions of participation.31 The court probably believed that applying contract law principles to the relationship between the state and the nursing homes in a formally race-neutral way (while setting aside the plaintiffs’ disparate impact discrimination claim altogether) would address the problems of Medicaid patients. But, as argued by feminist legal scholar Deborah Threedy, the conception of contract law as “neutral and objective” obscures the extent to which it reinforces bias.32 Although “contracts are typically thought of as market transactions” separate from discriminatory intent, the very nature of contracts is to suit people to “act as self-interested, rational, autonomous individuals concerned with the exchange of economic value.”33 Thus, in contracts, those with power often use it to obtain monetary gain from those without power, such as the poor. This unequal bargaining power is why Medicaid was enacted. The government has equal power with the nursing homes. Therefore, the government can negotiate equal access to nursing home care, which the poor alone would not be able to negotiate. The original opinion in Linton II disregarded this point when discussing the nursing homes’ impairment of contracts claim, instead concentrating on the nursing homes’ right to freedom of contract. Freedom of contract includes two principles. First, “that competent, autonomous individuals are entitled to enter into freely chosen obligations

30

31 32 33

Id.; Smith, supra note 2, at 254; Falcone & Broyles, supra note 10, at 588–592; Weissert & Cready, supra note 10, at 632, 641–642. It also violated Title VI. See Linton I, 779 F. Supp. at 932–933. Threedy, supra note 25, at 1248. Id. 1250.

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with minimal interference from the state.”34 Consent is itself a problematic concept, however. Feminists, borrowing from work on the idea of consent in rape law, argue that “consent” is more nuanced and debatable than many contemporary contract theorists imply.35 The second principle, “which follows from the first, is that an individual should not have obligations imposed on him (or her) by the state.”36 Thus, contract law includes autonomy and protection, which are both gendered. Men are afforded autonomy, while women are protected.37 Courts often ignore the inequality of bargaining power between contracting parties,38 except when one of the parties is a governmental entity. Then courts try to protect the non-governmental party in its freedom of contract. In the Linton II case, the court primarily focused on the nursing homes’ claims that the voluntariness of contract, namely freedom of contract, was violated because of a substantial impairment, even though it acknowledged that the freedom of contract standard required it to also discuss whether the state had a “significant and legitimate public purpose behind the regulation, such as remedying of a broad and general social problem.”39 Hence, the court highlights the nursing homes’ freedom of contract claims concerning reimbursement when discussing the “first come, first served” and “lock-in” requirements. Yet, the freedom of contract is not absolute;40 it can be limited by a state’s “significant and legitimate public purpose.”41 In this case, Tennessee had a “significant and legitimate public purpose” in increasing access to medically necessary nursing home care for Medicaid patients by imposing the “first come, first served” and “lock-in” requirements.42 Moreover, the state had a responsibility to ensure that Medicaid patients are provided with care in

34

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37 38 39 40 41 42

Nancy S. Erickson, Muller v. Oregon Reconsidered: The Origins of a Sex-Based Doctrine of Liberty of Contract, 30 Lab. Hist. 228, 232 (1989). Thus, contract law includes autonomy and protection, which are gendered. Threedy, supra note 25, at 1261. Men are afforded autonomy, while women are protected. Id. Consent is itself a problematic concept. Feminists, borrowing from work on the idea of consent in rape law, argue that “consent” is more nuanced and debatable than many contemporary contract theorists imply. See Jean Braucher, Contract v. Contractarianism: The Regulatory Role of Contract Law, 47 Wash. & Lee L. Rev. 697, 703–706 (1990). Erikson, supra note 34. Thus, contract law includes autonomy and protection, which are gendered. Threedy, supra note 25, at 1261. Men are afforded autonomy, while women are protected. Id. Threedy, supra note 25, at 1261. Id. at 1263–1264. Linton v. Tennessee (Linton II), 65 F.3d 508, 517–519 (6th Cir. 1995). Threedy, supra note 25, at 1263–1264. Linton II, 65 F.3d at 517–519. It also has an interest in addressing racial discrimination as required by Title VI.

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a reasonably prompt manner,43 which is accomplished by requiring nursing homes to admit Medicaid patients on a “first come, first served basis” and prohibiting nursing homes from kicking Medicaid patients out before their health improves. As a result of nursing homes’ unregulated ability to control admissions, Medicaid patients did not receive care in a reasonably prompt manner, a condition of participation in the Medicaid program. When discussing why the nursing homes’ “impairment of contract” arguments were not availing, the court mentioned that the “first come, first served” and “lock-in” requirements did not make the Medicaid contract involuntary. Yet, the court failed to acknowledge that these requirements ensured that Medicaid patients received the care that they were guaranteed under the Medicaid Act, which the nursing homes agreed to provide when they voluntarily agreed to enter into a contract to participate in Medicaid. As the district court noted, “just as compliance with Medicaid fire safety standards, quality of care standards and patient protection standards involves some cost or inconvenience, so too does compliance with basic Medicaid requirements,”44 including admitting Medicaid patients who are poor without discrimination. Hence, nursing homes cannot just decide what conditions of participation in the Medicaid program they want to comply with; they are required to comply with all the conditions of participation. The court should have enforced this expectation in the original opinion by ensuring the remedial plan would prevent discrimination by nursing homes. The court also explicitly declined to address the nondiscrimination requirements of Title VI, which are discussed in Majette’s feminist concurrence. Majette’s discussion of Title VI is an important addition, reflecting a feminist commitment to directly confronting subordination. But her feminist rewrite stopped short of requiring additional remedial actions that would have made a difference in the lives of Mrs. Carney and others like her and may have made a difference in the subsequent development of Medicaid law and civil rights law. Both the original opinion and Majette’s feminist concurrence fail to discuss the connection between the nursing homes’ practices and the harm to elderly African American Medicaid patients, which was poor health outcomes. Denied admission to a nursing home and relegated to unlicensed boarding homes, Mrs. Carney’s health declined so much that it required her emergency hospitalization. The failure to also hold nursing homes, who 43 44

42 U.S.C. § 1396a(a)(8) (2020). Linton ex rel. Arnold v. Comm’r Health & Env’t, Tennessee (Linton I), 779 F. Supp. 925, 934 (M.D. Tenn. 1990).

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intervened in the case as defendants, accountable for their discriminatory practices has allowed them to continue discriminatory practices that have been associated with poor health outcomes for African American Medicaid patients, even as the state of Tennessee implemented the remedial plan. Due to the remedial plan that the state crafted, the district court adopted, and the Sixth Circuit upheld, Tennessee implemented a regulatory framework that tracked nursing homes’ discriminatory admission practices.45 Specifically, the state required all nursing homes receiving Medicaid payments to submit admission data.46 The state checked this data against mandated admission lists and the medical records of admitted patients to ensure that the nursing home was not discriminating.47 Unfortunately, research shows that elderly African American Medicaid patients, like Mrs. Carney, still remained barred from equal access to quality nursing homes.48 It is possible that Majette’s feminist approach to centering the narrative of Mrs. Carney might have eventually influenced a majority of the circuit court to respond to this data by ordering a more adequate remedy. But the narrative method alone, without a substantive change in the holding, would not have secured justice for Mrs. Carney and similarly situated individuals. If a rewritten feminist majority in Linton II had set a new precedent by ruling that nursing homes would no longer be allowed to discriminate against patients because of socioeconomic status and race, these conditions may have changed. In conclusion, this case demonstrates the distinction between having health care insurance and having access to health care services. Although elderly Medicaid patients have health insurance, they often lack access to nursing home care, which is particularly true for elderly African American Medicaid patients. Furthermore, although conditions on governmental spending are an important lever for reform that required Tennessee to change its regulation of nursing home admission procedures, it is unclear whether it actually resulted in eradicating the dual system of nursing home care based on socioeconomic class and race. The concurring opinion clearly holds Tennessee responsible for this dual system. However, without also holding nursing homes accountable for their actions, the dual system of equal access to quality nursing home care has and will persist.

45 46 47 48

Linton I, 779 F. Supp. at 926. Tenn. A.D.C. § 1200-13-01-.08 (2009). Id. Smith, supra note 2, at 254; Falcone & Broyles, supra note 10, at 588–592; Weissert & Cready, supra note 10, at 632, 641–642.

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LINTON V. COMMISSIONER OF HEALTH AND ENVIRONMENT, STATE OF TENNESSEE, 65 F.3D 508 (6TH CIR. 1995)

gwendolyn roberts majette, circuit judge, concurring

i I agree with the court’s judgment finding a Medicaid violation and concur in the court’s conclusion that approval of the remedial plan was not an abuse of the district court’s discretion. I write separately to address the issue under Title VI of the Civil Rights Act of 1964, which the majority declined to discuss. “Historically, policies and actions of the United States government have promoted homesteading, land acquisition, home ownership, retirement, pensions, education, and asset accumulation for some sectors of the population, and not for others. Poor people – blacks in particular have generally been excluded from participation in these state-sponsored opportunities.” Melvin Oliver & Thomas Shapiro, Black Wealth/White Wealth, A New Perspective on Racial Inequality 4 (1995). Medicaid and Title VI of the Civil Rights Act of 1964 are laws designed to ameliorate structural barriers and promote economic justice, health justice, and equality. Medical practices and health care facilities were segregated prior to the passage of Title VI of the Civil Rights Act of 1964. Simkins v. Cone was a leading case that was instrumental in providing a legal and moral basis to prohibit federal funding that supported segregation in health care and to support passage of Title VI of the Civil Rights Act of 1964. 323 F.2d 959 (4th Cir. 1963). Attorney General Robert F. Kennedy filed an amicus brief in support of the plaintiffs, African American physicians and patients, when the case was argued before the US district court. See David Barton Smith, Health Care Divided 93 (1999). In Simkins, the US Court of Appeal for the Fourth Circuit held that racially discriminatory policies that barred African American patients from accessing private hospitals in North Carolina were unconstitutional if the hospitals received federal funds for construction and medical education under the Hill-Burton Act. Id. at 970. The court also declared unconstitutional the statutory and regulatory sections of Hill-Burton that allowed waivers to its nondiscrimination provisions by creating a separatebut-equal exemption. Id. at 969. The laws and policies violated the Equal Protection Clause of the Fourteenth Amendment and the Due Process

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Clause of the Fifth Amendment. The court justified its decision in part to prevent the significant health harms that result from racially discriminatory admissions policies that delay or deny care. Those harms contribute to health disparities such as North Carolina’s infant mortality rate for African Americans being twice the rate for white infants and a maternal mortality rate for African American women being five times the rate for white women. Id. at 970 n. 23. In an unprecedented act, the Supreme Court signaled its support for ending the use of federal funds to advance racially discriminatory policies by denying the hospitals’ petition for writ of certiorari just as Title VI was being debated in the US Congress. Moreover, numerous congressmen cited Simpkins as a rationale to pass Title VI. Smith, supra, at 101–105. This case raises issues regarding the willingness of Tennessee to protect the health and well-being of all its citizens, especially those that are vulnerable because of the intersection of their age, gender, race, and class. Instead of treating a status as mutually exclusive for analytical purposes, we consider the greater sum of the intersectional experience. See Kimberlé Williams Crenshaw, Demarginalizing the Intersection of Race and Sex, A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory, and Antiracist Politics, 1989 U. Chi. Legal F. 139 (1989). Two elderly women brought a class action lawsuit against the Tennessee Commissioner of Health, alleging violation of the Medicaid Act and Title VI of the Civil Rights Act of 1964. Ms. Mildred Linton filed her lawsuit in 1987. Ms. Linton was an elderly woman with rheumatoid arthritis who had lived for four years in a nursing home, where she received skilled nursing care services. She was advised that she would be discharged from the facility because it planned to decertify the dually certified Medicaid bed to no longer provide the lower level, intermediate care that she needed. As part of Medicaid distinct part certification, Tennessee allowed skilled nursing facilities, at their discretion, to “spot” certify beds for Medicaid participation. This practice allowed fewer than all beds within a particular wing or floor to be available for Medicaid recipients regardless of their required level of care. In this case, once Ms. Linton moved from needing skilled nursing care to intermediate care, she was told that her bed was no longer certified for Medicaid participation, and she would therefore not have a bed at the facility. In 1989, Mrs. Belle Carney moved to intervene in the lawsuit. Mrs. Carney was an elderly African American woman with Alzheimer’s disease who needed skilled nursing care following a hospitalization. No Medicaid bed was found in a nursing home, and she lived in inadequate, unlicensed boarding homes for two years until her health declined, requiring emergency hospitalization.

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From 1981 to 1985, prior to implementation of the limited-bed/spot bed certification, Tennessee operated the Bed Management Program. This policy placed a defined percentage limitation on the number of Medicaid beds in a nursing home facility. In 1985, the Health Care Financing Administration (HCFA), the federal agency that administers Medicaid, advised the state to end the policy. Plaintiffs alleged that the limited-bed or spot certification by the Tennessee Department of Health and Environment (TDHE) artificially restricted the number of available Medicaid beds in nursing homes which resulted in discrimination against indigent individuals and minorities. The limited-bed/spot bed certification allowed nursing homes to unilaterally change the designation of a Medicaid bed to a non-Medicaid bed. The lower court agreed with the plaintiffs’ arguments and ordered the state to submit a remedial plan to end and prevent present and future Medicaid and Title VI violations. In July 1990, this Court allowed several nursing homes in Tennessee to intervene to appeal the lower court decision. To prevent patient transfer trauma if nursing homes withdrew from Medicaid instead of fully certifying their beds, the remedial plan included lock-in and lock-out provisions which the Appellant nursing homes challenge on appeal. The lock-in provision allowed existing Medicaid-eligible residents to remain in the facility as long as they wished. However, non-Medicaid residents who subsequently became eligible for Medicaid were only allowed to remain in the facility after the nursing home withdrew from Medicaid until June 30, 1991. After that date, the newly eligible Medicaid residents would be required to move. On January 24, 1991, the HCFA approved the remedial plan. On June 20, 1991, the remedial plan was slightly revised to replace the June 30, 1991 departure date with a flexible “one-year grace period” from the day the TDHE approved a facility’s request to withdraw. The lock-in provision of the remedial plan was revised again on June 30, 1993. This version was more protective of the rights of the existing nursing home beneficiaries because it protected existing Medicaid-eligible residents as well as those that became Medicaideligible in the future. The revised lock-in provision allowed for nursing facilities that withdrew from the Medicaid program to continue to receive Medicaid payment for individuals who resided in the facility at the time of the facility’s notice to withdrawal. Payment was contingent on “(a) the facility’s compliance with all requirements for Medicaid participation; and (b) its agreement to continue to serve, and accept Medicaid payment for, on a non-discriminatory basis, all individuals residing in the facility on the date of notification of withdrawal, who are or become Medicaid-eligible.”

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Each version of the remedial plan also included a lock-out provision. Nursing homes that left the program were excluded from the program for two years. The state could have waived this exclusion if it served the interest of the remedial plan. If a nursing home violated the remedial agreement, it would have been excluded from participation for five years. The withdrawing nursing homes were also required to notify the existing Medicaid residents, the non-Medicaid residents, and persons on the waiting list of their decision to withdraw from the Medicaid program. While full certification of beds would increase the overall number of beds available to plaintiffs, the more powerful remedy required by Title VI is equal access to all the beds that are available. According to the majority opinion, at the time of the lawsuit, 77% of nursing home beds were certified and only 23% were uncertified. Linton v. Comm’r of Health & Env’t, 65 F.3d 508, 511 (6th Cir. 1995).

ii This Court was tasked with determining if the district court correctly found the remedial plan overbroad, but I write to further determine if the Tennessee limited-bed policy had a disparate impact on blacks (African Americans) in violation of Title VI of the Civil Rights Act of 1964 and its implementing regulations. I find that Title VI alone is sufficient to find the remedial plan illegal. Seventy percent of Tennessee’s Medicaid program is paid for by the federal government. Title VI of the Civil Rights Act of 1964 was designed to remove barriers that limit minority participation in federally funded programs. It was designed to prevent federal money that is raised by taxpayers of all races from being spent in ways that encourage, entrench, subsidize, or result in racial discrimination. Bryan v. Koch, 492 F. Supp. 212, 230 (S.D.N.Y. 1980). Title VI of the Civil Rights Act of 1964 provides: “No person in the United States shall, on the grounds of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be subject to discrimination under any program or activity receiving Federal financial assistance.” 42 U.S.C. § 2000(d). The Supreme Court has held that the Title VI statute prohibits only intentional discrimination. Guardians Ass’n v. Civ. Serv. Comm’n, 463 U.S. 582 (1983). However, the implementing regulations go further and specifically prohibit a state from administering its Medicaid program in a manner which: directly or through contractual or other arrangements, utilize[s] criteria or methods of administration which have the effect of subjecting individuals to

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discrimination because of their race, color or national origin, or have the effect of defeating or substantially impairing accomplishment of the objectives of the program as respect individuals of a particular race, color or national origin.

45 C.F.R. § 80.3(b)(vii)(2) (emphasis added). To establish a disparate impact case, the plaintiffs must establish a prima facie case that Tennessee’s limited-bed certification policy has a disparate impact on racial minorities’ access to nursing homes in Tennessee. The burden then shifts to the defendant who must prove that the disparate impact is justified by a legitimate bona fide interest. Plaintiffs may rebut the defendant’s justification by showing that other less discriminatory alternatives exist. Bryan v. Koch, 627 F.2d 612, 618 (2d Cir. 1980); NAACP v. Med. Ctr. Inc., 657 F.2d 1322, 1336 (3d Cir. 1981).

A Plaintiffs Linton and Carney established a prima facie case through testimony, reports, and statistics that Tennessee’s limited-bed certification policy had a disproportionate effect on African Americans’ access to nursing home care. Ms. Beverly Bass, the Director of Title VI Compliance for the TDHE, testified in her deposition that elderly Black people face challenges to accessing nursing home care statewide. App. 001069. She testified that the limited-bed certification policy restricted access to the short supply of nursing home beds and disproportionately affected minorities. Ms. Bass testified that some nursing homes prefer private-pay patients, and the Defendants concede this fact. Ms. Bass also testified that Black people over sixty-five have a higher reliance on Medicaid. This reliance is caused by a higher rate of poverty among elderly African American Tennesseans, who were twice as likely as elderly whites to live in poverty. The rate of poverty was 41.4% for elderly African Americans compared to 22.4% for elderly whites. 1980 Census data. Another economic disparity that should be considered is wealth. See Melvin Oliver & Thomas Shapiro, Black Wealth/White Wealth, A New Perspective on Racial Inequality 5 (1995) (wealth is unevenly distributed and African Americans are disproportionately “cemented to the bottom of society’s economic hierarchy”). Additionally, Ms. Bass testified that there was a greater need for nursing home services among elderly minorities because most assessments conclude that they are more likely to have “poor health status” and higher incidences of “handicapping conditions or conditions that impair function.” App. 001080. In fact, the life expectancy for African Americans was six years shorter than the life expectancy for whites in 1980. According to

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the US Centers for Disease Control and Prevention (CDC), the average life expectancy for whites in 1980 was 74.4 years compared to 68.1 for African Americans. While women live longer than men, the six-year disparity remained, with white women having a life expectancy of 78 years compared to 72.5 for African American women. The disparity in life expectancy increased to seven years in 1990. For whites the life expectancy was 76.1 compared to 69.1 for African Americans. For women the disparity in life expectancy decreased to 5.8 yrs. The life expectancy was 79.4 for whites compared to 73.6 for African Americans. Table 15 (page 1 of 2). Life Expectancy at birth, at age sixty-five, and at age seventy-five, by sex, race, and Hispanic Origin: United States, selected years 1900–2015. As a result of the limited-bed certification policy, elderly African Americans in Tennessee only comprised 15.4% of the nursing home population, despite the fact that they comprised 39.4% of the Medicaid population. Statistical evidence of the disparate racial impact of state policies may be used to establish a prima facie case. Guardians Ass’n, 463 U.S. at 592–593. There is a history of discrimination by the nursing homes in Tennessee. In 1980, the Office of Civil Rights for the US Department of Health and Human Services found that the Tennessee Medicaid Agency was not operating its nursing home program in Shelby County (Memphis) in compliance with Title VI. This resulted in the state’s adoption of the “first come, first served” admissions rule for Medicaid-funded nursing homes. In 1985, Tennessee was sued because nursing homes discriminated against minority applicants in violation of Title VI, and state officials were complicit in the behavior. Tennessee entered into a consent decree which required them to strengthen their enforcement of the “first come, first served” rule and monitor nursing home compliance with Title VI. Hickman v. Fowinkle, No. 80-2014-M (W.D. Tenn. 1985). According to Ms. Bass, the first state survey of Tennessee nursing homes was conducted in 1986. It found that many of the facilities (170 out of 243) continued to be out of compliance with Title VI. App. 001084. B Once plaintiffs establish a prima facie case of disparate impact, the burden shifts to the defendant to rebut that evidence. Here, neither Tennessee nor the intervening nursing homes has met that burden. The district court correctly found that Tennessee had not met its burden of proof to rebut the plaintiffs’ prima facie case. An assertion that the disparate impact on racial minorities was due to “self-selection preferences of minorities, minorities [sic] reliance upon extended family, lack of transportation, and fear of institutional care,” is

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not a legitimate justification. Linton v. Comm’r of Health & Env’t, 779 F. Supp. 925, 935 (M.D. Tenn. 1990). This is especially so given that there was an abundance of testimony from individuals who sought admission for their family members of color and were turned away and ombudsmen and community leaders who sought equal access to care in private nursing homes but were denied access because of the nursing homes’ preference for privatepay patients. There is a dual system of nursing home care in Tennessee. The private nursing homes largely serve a disproportionately white patient population in contrast to the large public county-operated nursing homes which disproportionately serve a poorer, minority patient population. Ms. Carney was ultimately admitted to a county-operated nursing home in Davidson County, after the private nursing homes denied her admission. Ms. Bass testified that when you include the publicly run nursing homes in Medicaid statistics, it masks the true extent of barriers that minorities encounter to access admission to private nursing homes. Accordingly, given that Tennessee has an affirmative duty to monitor facilities to prevent discrimination in Medicaid, it must invalidate provider agreements for certified facilities that “fail to meet the civil rights requirements set forth in 45 C.F.R. Parts 80, 84, and 90.” 42 C.F.R. § 442.12(d).

iii For the reasons stated in this concurrence, the district court correctly found that the limited-bed policy had a disparate impact on Black people under Title VI of the Civil Rights Act of 1964. The district court’s decision is affirmed. Mrs. Belle Carney’s denied access to appropriate treatment in a private nursing home raises concerns about the intersectionality of race, class, age, and gender. Crenshaw, supra. African Americans’ reliance on and denial of benefits to the Medicaid program reflect past economic injustices that are structured by law. This class action also raises several societal concerns about aging that are captured by Professor Martha Fineman’s theory on the universality of dependency. She notes that aging causes biological and physical dependency on others that should create a shared societal understanding to financially support caregivers. To value caretaking, Professor Fineman argues that the market and government should bear their fair share of responsibility. Martha Albertson Fineman, The Neutered Mother, The Sexual Family and Other Twentieth Century Tragedies 161–164, 230–236 (1995). When Fineman’s arguments are applied to the case at hand, they magnify the importance of the Medicaid program in providing funding to care for the

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health of poor elderly people which includes the provision of nursing home care. In order for the government (federal and state) and the market (nursing home facilities) to assume their fair share of responsibility, they must comply with the dictates of the Medicaid program and Title VI. Therefore, I concur in the majority’s holding but state my separate reasons for doing so.

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8 Commentary on Olmstead v. L.C. ex rel. Zimring doron dorfman

background The 1999 Supreme Court decision in Olmstead v. L.C. ex rel. Zimring1 has been celebrated as the Brown v. Board of Education2 for disability rights, as it gave meaning to the integration mandate of the Americans with Disabilities Act (ADA).3 It is also a case concerning a state Medicaid program’s failure to provide appropriate services for people with disabilities. The plaintiffs, Lois Curtis (anonymized in the opinion as L.C.) and Elaine Wilson (E.W.), were two women with developmental disabilities and mental illness who lived in the Georgia Regional Hospital (a state-run institutional facility). After years of institutionalization, their physicians concluded that Lois and Elaine could be cared for appropriately in a community setting. The state hospital attempted to find a community placement for at least one of the plaintiffs but was unable to do so because there were no available state Medicaid waiver funds for a community placement.4 Thus, both plaintiffs remained institutionalized in spite of their physicians’ recommendations. When Elaine was an infant, she suffered brain damage due to an extremely high fever. As a child, she was sent to public school, then private school, and then, due to trouble catching up with other children, a school for children with disabilities, where doctors diagnosed her with “mental retardation” (known today as an intellectual-developmental disability). The doctors recommended institutionalization as the only way to properly provide for Elaine’s

1 2

3 4

527 U.S. 581 (1999). See generally Mary C. Cerreto, Olmstead: The Brown v. Board of Education for Disability Rights: Promises, Limits, and Issues, 3 Loy. J. Pub. Int. L. 47 (2001). 42 U.S.C. § 12101. L.C. ex rel. Zimring v. Olmstead, 138 F.3d 893, 903 (11th Cir. 1998).

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needs.5 And so, at the age of fifteen, she was admitted to a state mental hospital. Elaine moved between institutions and ended up on the streets several times before arriving at Georgia Regional Hospital.6 During the litigation of the case, the state wanted to release Elaine from the hospital into a homeless shelter but later withdrew its proposal after her attorney filed a complaint.7 Like Elaine, Lois, a Black woman, moved between centers, hospitals, and jails throughout her childhood and teenage years.8 She was sent to live at the Georgia Regional Hospital at age eleven after being diagnosed with mental and intellectual disabilities. To appreciate the context in which Elaine and Lois were institutionalized and the challenges that stood in their way as they sought care within a community setting, it is helpful to understand the long history of North American public policy’s heavy reliance on large-scale, isolated institutions – such as nursing homes, asylums, boarding homes, psychiatric hospitals, and group homes – to treat those labeled as having disabilities. This history of institutionalization dates to the late eighteenth century and early nineteenth century,9 and alongside people with “obvious” disabilities, it affected other “socially inadequate” individuals, namely criminals, indigents, immigrants, and poor people,10 who were housed in almshouses, workhouses, and jails.11 Scholars thus point to institutionalization as a principal source of the mass incarceration issue currently dominating the American criminal justice system.12 The rationale for institutionalization was social control, in other words, the simultaneous protection of people with disabilities who were housed there

5

6

7 8

9

10

11 12

Elaine Wilson’s Story Continues, OlmsteadRights,www.olmsteadrights.org/iamolmstead/ history/item.5405-Elaine_Wilsons_Story_Continued (last visited June 4, 2021). Derrick Henry, Atlanta: Elaine Wilson, Beat Disability, Discrimination, Legacy.com (Dec. 10, 2004), www.legacy.com/obituaries/atlanta/obituary.aspx?pid=2907375. Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581, 605 (1999). Steve Chambers, Lois Curtis: The Artist and the Disability Hero, Black Art Am. (Oct. 29, 2019), https://blackartinamerica.com/index.php/2019/10/29/lois-curtis-the-artist-and-thedisability-hero/?fbclid=IwAR3WO6q9hWGlTWBLakEVoOb9rGdA4ki9tkw413XUw6JblWL4xP0oVeUHnk. Laura I. Appleman, Deviancy, Dependency, and Disability: The Forgotten History of Eugenics and Mass Incarceration, 68 Duke L.J. 417, 427 (2018). For example, one deaf Black man spent sixty-seven years in a North Carolina mental hospital without being diagnosed with a mental illness. Susan Burch & Hannah Joyner, Unspeakable: The Story of Junius Wilson (2007). Appleman, supra note 9. Liat Ben-Moshe, Decarcerating Disability: Deinstitutionalization and Prison Abolition 11–15 (2020).

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along with the protection of society from that group.13 Those labeled as having mental disorders and developmental delays, along with people who were deaf, blind, and had physical disabilities, were segregated by incarceration in facilities. Segregation contributed to the stigmatization of people with disabilities as dangerous, worthless, and even inhuman and thus deserving of being locked up and relegated to the out-of-sight margins of society.14 By the end of the Civil War, a two-tier system emerged: Wealthy but unwell people were housed in private “moral asylums,” which offered adequate quality of care and better conditions, while the poor and disabled (two categories that have been historically strongly intertwined) were warehoused in state institutions that provided minimal treatment.15 The advent of Medicaid in 1965 triggered the first major push for deinstitutionalization. Medicaid offered states an incentive to move patients out of state institutions by allocating federal funding for medical assistance services in the community.16 Medicaid, however, includes a specific restriction, the “IMD exclusion,” which prohibits the use of federal financing for community care for patients between the ages of twenty-one and sixty-five residing in “institutions of mental diseases” larger than sixteen beds.17 This meant that most adult patients with mental illness and substance use disorders were discharged from large asylums only to be placed in nursing homes and general hospitals.18 By the 1980s, disability activists had begun presenting empirical research that proved that community care was cheaper compared with institutional care.19 Nonetheless, the IMD exclusion stood in the way of a community placement for Lois and Elaine. Treatment in community-based programs would have allowed Elaine and Lois much greater independence and opportunity. Therefore, they argued, 13

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Kim Nielsen, A Disability History of the United States 108–110 (2012); Jacobus tenBroek & Floyd W. Matson, The Disabled and the Law of Welfare, 54 Calif. L. Rev. 809, 811–816 (1966). Steven Noll, Institutions for People with Disabilities in North America, in Michael Remis, Catherine Kudlick & Kim Nielsen, Oxford Handbook of Disability History 307, 307 (2018). Rabia Belt, Ballots for Bullets? Disabled Veterans and the Right to Vote, Stan. L. Rev. 435, 443 (2017); Emily Clark, Mad Literature: Insane Asylums in Nineteenth-Century America, 4 Ariz. J. Interdisc. Stud. 42, 46 (2015); Appleman, supra note 9, at 430. See 42 U.S.C. § 1396d(a). See id. §§ 1396d(a)(4)(A), (24). Patients younger than twenty-one or older than sixty-five are covered under Medicaid. See id. §§ 1396(a)(14)–(16). Appleman, supra note 9, at 454. Jefferson D.E. Smith & Steve P. Calandrillo, Forward to Fundamental Alteration: Addressing ADA Title II Integration Lawsuits after Olmstead v. L.C., 24 Harv. J.L. & Pub. Pol’y 695, 703–704 (2001).

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the state Medicaid program was required to provide treatment in communitybased programs under the ADA’s mandate for treatment in the most integrated setting, in other words, “a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible.”20 The ADA, which became law in 1990, aimed to address lack of personal safety along with the loss of freedom, privacy, and opportunity for people with disabilities caused by institutionalization. Title II prohibits state and local entities from discriminating against people with disabilities.21 The Department of Justice issued regulations to implement Title II; these regulations specify that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”22 This language is nearly identical to that of the regulations issued in 1977 to implement Section 504 of the Rehabilitation Act.23 Thus both the ADA and Section 504 cover state programs and institutions for people with disabilities. The ADA also provides a requirement for reasonable modifications in policies, practices, or procedures operated by government entities to accommodate people with disabilities, unless those would cause a “fundamental alteration” in “the essential nature of the goods, services, facilities, privileges, advantages, or accommodations provided.”24 Elaine and Lois were represented by lawyers from the Atlanta Legal Aid Society to whom the two made only one request: “Would you please get me out of here. When am I getting out of here?”25

original opinion Justice Ginsburg, writing for the majority in the original Olmstead opinion, affirmed the determination of the lower courts that undue institutionalization qualifies as discrimination under Title II. Disability discrimination therefore includes segregation in cases in which it is not necessary,26 a view that the Court found aligned with Congress’ intent when it enacted the ADA.27 Justice 20 21 22 23

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26 27

28 C.F.R. § 35.130(d); Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581, 592 (1999). 28 C.F.R. § 12132. Id. § 35.130(d). Id. § 41.51(9). Nevertheless, there are minor distinctions between the ADA and Section 504, as the latter applies only to state or local government entities that receive some federal funding. 42 U.S.C. § 12201(f ). OlmsteadRights YouTube, Olmstead: From the Case toward Real Transformation, YouTube (July 21, 2014), www.youtube.com/watch?v=oezulXzBt2k (interview with Sue Jamieson, one of the attorneys representing the plaintiffs in the case). Olmstead, 527 U.S. at 596. Id. at 600.

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Ginsburg found institutionalization to be discriminatory, as it takes a toll on the lives of patients, causing them “to relinquish participation in community life they could enjoy given reasonable accommodations [to receive treatment], while persons without mental disabilities [the comparison class] can receive the medical services they need without similar sacrifice.”28 Furthermore, according to Justice Ginsburg, the practice of segregating patients in institutions also has a stigmatizing effect on people with disabilities as a group, as it perpetuates views of worthlessness, complete dependence, and unworthiness of participation in community life.29 Justice Kennedy, in a concurring opinion, found it important to state that the personnel at the Georgia hospital and the state representatives did not have any ill intentions in their treatment of L.C. and E.W. but noted that “the line between animus and stereotype is often indistinct.”30 The Supreme Court did not abolish the practice of institutionalization altogether. However, both Justice Ginsburg’s majority opinion and Justice Kennedy’s concurring opinion required states to support myriad forms of treatment, including state-run community-based programs alongside institutional settings, through their Medicaid programs. Their opinions required states to determine the appropriate treatment on a case-by-case basis, depending on the eligibility and needs of patients with disabilities, as determined by mental health professionals the states employ.31 The Supreme Court’s decision accommodated (to some extent) the costbased arguments the state had raised. The state argued that inadequate funding, and not discrimination against the plaintiffs, was the reason for its decision to keep the plaintiffs in an institutional setting. In addition, the state argued that forcing the state to deinstitutionalize the plaintiffs would fundamentally alter the state’s activity of taking care of people with mental disabilities. The district court initially rejected both of these arguments, but the Eleventh Circuit disagreed in an opinion holding that deinstitutionalization of eligible persons was “not absolute” as a requirement. The Eleventh Circuit ruled that the state could use a funding-related defense, based on the argument that imposing too great a cost given available resources would fundamentally alter the state’s activity and thus could not be required by the ADA. But the court noted that this defense should be successful only “in the most limited of circumstances . . . [when] it would be so unreasonable given the

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Id. at 601; see also id. at 612 (Kennedy, J., concurring). Id. at 600 (majority opinion). Id. at 611 (Kennedy, J., concurring). Id. at 587, 602–603; see also id. at 610 (Kennedy, J., concurring).

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demands of the State’s mental health budget that it would fundamentally alter the services [the State] provides.”32 The Supreme Court pushed the cost-defense door open even further by concluding that the Eleventh Circuit’s determination left the state “virtually defenseless.”33 The fundamental alteration defense, according to Justice Ginsburg, should allow for equitable treatment of people with a wide diversity of conditions and impairments. If a move toward deinstitutionalization for certain patients would inflict harm on the treatment of other patients not eligible for community-based programs, then the state could have a valid defense against deinstitutionalization.34 Furthermore, if, for example, a state could show that it had a waiting list of institutionalized patients seeking placement in community settings, which moved at a reasonable pace and did not serve as a pretext to keep the state institutions operating, then the state’s acts would be determined reasonable.35 Essentially, the Court determined that for states to be able to facilitate a wide range of treatments for people with disabilities, the law must provide some leeway and discretion, even if this flexibility comes at the expense of a reasonable waiting period that would deny an individual patient freedom and access to appropriate care. In his concurrence, Justice Kennedy even went as far as saying that if a state does not currently maintain a community-based program, then based on the ADA’s fundamental alteration defense, forcing the state to establish one would raise constitutional concerns, as treatment of people with disabilities is a political question with which the Court should not interfere.36 The dissenting opinion by Justice Thomas accepted the two cost-defense claims the state made. Justice Thomas relied on what he termed the “traditional understanding” of what constitutes discrimination. He saw the disparate treatment of the plaintiffs as differentiation within the same group, in other words, between people with disabilities who could live in community-based programs and those who cannot, instead of differentiating between two groups (people with and without disabilities). According to Justice Thomas, only the latter constituted discrimination under the traditional view.37 Justice Thomas also opined that the plaintiffs were not discriminated against “by reason of

32 33 34 35 36 37

Id. at 595 (majority opinion). Id. at 603. Id. at 605. Id. at 606. Id. at 612 (Kennedy, J., concurring). Id. at 616–617.

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their disability” but because of the financial burden community-based programs impose on states.38

feminist judgment The feminist opinion by Professor Becka Rich, writing for the majority as Justice Rich, rules in the plaintiffs’ favor, just as the original opinion did, but her holding differs from the original opinion’s by firmly rejecting the defendant’s cost-related arguments. In doing so, she emphasizes the extent to which federal Medicaid law facilitates, rather than hinders, deinstitutionalization consistent with the commands of the ADA. Rich heavily relies on legislative history to demonstrate that “the ADA was intended not merely to make discrimination illegal, but like [other] civil rights laws before it, to ensure that people with disabilities took their place in society along with those without disabilities.” Delivering a powerful message about the emancipatory power of the ADA, Rich begins her decision with a comparison between canonical decisions such as Brown v. Board of Education and United States v. Virginia39 and the consequent segregation of disabled people due to institutionalization. “Separate is not equal. It was not for Black[s], it is not for the disabled,” she noted, citing the powerful words of Senator Lowell Weicker, one of the drafters of the ADA. This strong standpoint leads Rich’s decision to a different result from that of the original opinion in two aspects. Rich is unwilling to easily accept the economic loophole the defendant, the state of Georgia, attempts to claim. Rich wholly rejects the defendant’s claim that the plaintiffs were not discriminated against because of their disability but due to inadequate funding (similar to Justice Thomas’ dissent in the original decision). She explains that although the ADA does not require the state to develop a particular program for community integration, once the state has such a program in place, it needs to comply with Title II regulations. Rich also accepts the position of the amicus curiae brief by fifty-eight former state mental health commissioners that “the move from predominantly institution-based care to community-based care for people with disabilities will save their states significant amounts of money.” She cites another 1992 report by the Department of Health and Human Services (HHS) showing that communitybased treatment is more cost-effective than institutional care is. At first glance, it seems as though Rich’s opinion simply puts the value of human dignity above economic value, but by also providing evidence showing 38 39

Id. at 626. 518 U.S. 515 (1996).

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that dignity and savings can be compatible, her move is complete and convincing. Toward the end of her decision, Rich also suggests that a determination that spending on community-based care leads to a fundamental alteration of a state’s policy should only be driven by the specific facts at the individual case level. By offering this statement, Rich narrows the economic loophole argument even more than the original decision had. Importantly for our purposes (in a volume dedicated to health law), Rich delves deeply into federal Medicaid law to describe the ways in which the federal government ensured states could move toward deinstitutionalization, something notably missing from the original opinion. In Section IV of her decision, Rich describes how Congress created a Medicaid waiver program as an alternative to institutional care to fund home and community-based services (HCBS). In 1981, Congress passed Section 1915(c) of the Social Security Act, which allows states to seek waivers to use federal Medicaid funding to offer HCBS. The 1915(c) waivers permit the state to use Medicaid funds to provide case management, residential and habilitation services, supported employment, personal care, assistive technology, home-delivered meals, and non-medical transportation. The largest group covered under the Section 1915(c) waiver programs is people with intellectual or developmental disabilities, followed by older adults and people with physical disabilities.40 Rich calls out the state of Georgia for underutilizing the Medicaid waiver program and, by doing so, going against the spirit of the ADA. Rich thus calls on the state of Georgia to allocate more of its Medicaid funding toward HCBS, a move that the original opinion declined to make.

discussion Rich’s rewritten opinion is distinctively feminist in the way in which it sets a clear expectation that states must ensure they are providing the resources all people need to thrive, including through partnership with the federal government under Medicaid, to fulfill the commands of the ADA. Her vision of a responsive state is influenced by the work of feminist legal scholar Martha Fineman, among others. In Fineman’s view, while “welfare state” programs appropriately recognize the universal vulnerability that is an inherent aspect of

40

See Steve Eiken et al., Medicaid Expenditures for Section 1915(c) Home and Community-Based Waiver Programs in FY 2016, IAP: Medicaid Innovation Acceleration Program (2018), www.medicaid.gov/sites/default/files/2019-12/ltssexpenditures2016.pdf.

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the human condition,41 “means-tested social welfare programs for those who failed to live up to their personal responsibility to protect themselves”42 are viewed as a “highly stigmatized backup when the family ‘fails’” to provide the care individuals need.43 Medicaid is one such means-tested welfare program. The conditions experienced by Elaine, Lois, and millions like them who have been subjected to horrific conditions in institutions44 reveal the extreme consequences of stigmatization of assistance programs and the people who rely on them. The Olmstead case offered the Supreme Court an opportunity to take a major step toward dismantling that stigmatization and its consequences, but the original opinion failed to take full advantage of this opportunity. Compared to the original Olmstead opinion, Rich’s feminist rewrite, with its embrace of the responsive state, could have dramatically altered the development of the federal-state partnership responsible for Medicaid. The original Olmstead decision was rightly heralded as a groundbreaking decision for disability rights. But the Court’s failure to delve into the details of how states could use the Medicaid program to support deinstitutionalization was a missed opportunity. Combined with the Court’s efforts to accommodate the state’s cost concerns, the decision likely stalled progress on deinstitutionalization more than was necessary under existing law. Estimates of the long-term care population in the United States are that approximately 8 million people live in the community and that about 1.3 million people live in institutional settings.45 The users of long-term care services were overwhelmingly women in and outside of institutions.46 Rich’s feminist rewrite, which charted a path for states to move more rapidly toward deinstitutionalization through the use of Medicaid waiver funding for HCBS and indicated that the courts should hold states to task under the ADA if they failed to do so, could have made a difference in these people’s lives.

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Martha Albertson Fineman, Vulnerability and Social Justice, 53 Valparaiso U. L. Rev. 341, 344 (2019). Martha Albertson Fineman, Vulnerability and Inevitable Inequality, 4 Oslo L. Rev. 133, 148 (2017). Id. at 141. In the 1950s, doctors used developmentally disabled children housed in the Willowbrook State School as subjects in medical experiments in one of the most serious breaches of research ethics. See Eugene F. Diamond, The Willowbrook Experiments, 40 Linacare Q. 133 (1973). National Center for Health Statistics, Long-Term Care Providers and Services Users in the United States, 2015–2016: Analytical and Epidemiological Studies, 43 Vital & Health Stat. 1, 18–19 (2019), www.cdc.gov/nchs/data/series/sr_03/sr03_43-508.pdf. Id. at 19; H. Stephen Kaye, Charlene Harrington, & Mitchell P. LaPlante, Long-Term Care: Who Gets It, Who Provides It, Who Pays, and How Much?, 29 Health Affs. 1, 10 (2019).

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Rich’s rejection of the state’s cost-related arguments in her feminist reimagining of Olmstead is particularly critical to her embrace of a responsive state. Interestingly, it was the coalition between civil rights lawyers and fiscal conservatives that created a strong lobby for deinstitutionalization because both relied on arguments that it would be cheaper to treat people with disabilities in the community than in large, costly institutions.47 However, simply releasing people with disabilities from institutional incarceration to society without adequate public funding for infrastructure and social support could lead to harsh results. A reminder of that could be the state’s idea about releasing Elaine into a homeless shelter, which was later retracted after her attorney filed an administrative complaint.48 Although critics of deinstitutionalization argue that it has contributed to a rise in the homeless population, scholars have shown the connection between homelessness and deinstitutionalization to be not all that simple.49 This is because other factors besides deinstitutionalization have contributed to the homelessness problem. For instance, in the 1980s, as homelessness was becoming a significant issue, the federal and state governments began cutting Supplemental Security Income (SSI) and housing assistance.50 Therefore, the image of the mentally ill or otherwise disabled homeless person should not be used as an argument against deinstitutionalization but rather as a reminder of the need for better access to high quality, longterm care for people with disabilities in community settings. As feminist legal scholars have argued, long-term care should be considered a public responsibility and not a private choice.51 Had it been the actual Supreme Court majority opinion in 1999, Rich’s feminist rewrite would have been a major step in the right direction. A pronouncement from the High Court that states would be expected to take full advantage of the flexibility and financial support the federal government offers under the Medicaid program to fulfill their responsibilities under the ADA would have been truly monumental. But health care programs such as Medicaid and Medicare are not sufficient, by themselves, to ensure that the ADA’s vision is fulfilled. Health care programs must be supplemented by a

47

48 49 50 51

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardozo L. Rev. 1, 20–21 (2012). Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581, 605 (1999). Bagenstos, supra note 47, at 10–11. Id. at 11–12. Allison K. Hoffman, Reimagining the Risk of Long-Term Care, 16 Yale J. Health Pol’y L. & Ethics 147, 172–173 (2016); Martha Albertson Fineman, The Autonomy Myth 38 (2004).

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wider network of housing, transportation, and socialization programs.52 Those programs could be funded through federal, state, and local streams.53 As legal scholar Samuel Bagenstos argues, the future of disability law should include a move away from antidiscrimination mandates and toward the adoption of “a social welfare approach – that is, sustained and direct government intervention through such means as public funding and provision of services.”54 Such a support system should be flexible enough for services and financial support to be tailored to the needs of individual families. Concerns about access to high quality HCBS are also very much a part of the lives of two additional underserved groups, that is, family caregivers and former institutional workers. Though both groups supported litigation aimed at improving conditions in institutions in the 1970s,55 family members and workers’ unions lobbied against and intervened in litigation to oppose deinstitutionalization of people with developmental and mental disabilities.56 Closure of institutions came at the price of undermining the livelihoods of the thousands of workers in state institutions. Additionally, for many family members who are unable to fill in the numerous large gaps found in social insurance and long-term care policies, this meant they would be unable to provide the best care for their disabled loved ones.57 Approximately 43.5 million informal and unpaid caregivers are in the United States.58 The personal cost of caregiving has been documented in the literature.59 A 2008 report on the well-being of family caregivers – sponsored by the Australian government and based on a survey of more than 1,000 individuals – found them to have significantly worse physical and mental health than the general population had.60 It also found that twenty-eight

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56 57 58

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Chris Koyanagi, Learning from History: Deinstitutionalization of People with Mental Illness as Precursor to Long-Term Care Reform, Kaiser Comm’n on Medicaid and the Uninsured 13, 17 (2007), www.kff.org/wp-content/uploads/2013/01/7684.pdf. Id. Samuel Bagenstos, The Future of Disability Law, 114 Yale L.J. 10, 54 (2004); see also Mark C. Weber, Disability and the Law of Welfare: A Post-Integrationist Examination, 2000 U. Ill. L. Rev. 889, 906 (2000). David J. Rothman and Sheila M. Rothman, The Willowbrook Wars: A Decade of Struggle for Social Justice 40–45 (1984); Bagenstos (2012), supra note 54, at 17. Id. at 18–19. Hoffman, supra note 51, at 170–171; Koyanagi, supra note 52, at 13. Caregiver Statistics Demographics, Fam. Caregivers All. (last visited June 4, 2021), www .caregiver.org/caregiver-statistics-demographics. Hoffman, supra note 51, at 174. Ben Edwards et al., Report into the Nature and Impact of Caring for Family Members with Disability in Australia, Austl. Inst. of Fam. Stud. 65, 93 (2008), https:// aifs.gov.au/sites/default/files/publication-documents/rr16.pdf.

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percent of the caregivers, almost one in three, had separated from their partners since they had begun caring for the disabled family member (who was not a partner).61 Furthermore, it found that caring had an effect on the caregivers’ participation in the labor force,62 which can lead to greater financial hardship. As with childcare, women are the ones who disproportionately carry the economic, physical, and emotional burden of caregiving for disabled family members.63 Feminist legal scholars have explored how societal and legal structures, from the labor market to family law and tax law (that does not tax the value of household labor), all encourage the privatization of long-term care, stripping this idea of any public responsibility and placing the burden on women.64 As Fineman famously argued, the concept of choice is engrained in social and cultural norms. As increasing pressure is placed on women to leave the workplace to engage in “free” caregiving, choice seems to no longer be a proxy for women’s will and better resembles exploitation.65

implications Progress toward deinstitutionalization has been painfully slow. Although the Medicaid waiver system was implemented more than three decades ago, spending on HCBS only surpassed spending on institutional care for the first time fairly recently, in 2013.66 When implementing programs to support HCBS, the state should take advantage of skilled workers who used to work in institutions and are increasingly being left unemployed. The state should work with labor unions to help at least some of these workers secure new employment in community-based settings. Although those workers have experience assisting people with disabilities, they would still need training to

61 62 63 64

65

66

Id. at 50. Id. at 104. Fam. Caregivers All., supra note 58; Hoffman, supra note 51, at 176, 180. Fineman, supra note 51, at 41; Anne L. Alstott, Private Tragedies? Family Law as Social Insurance, 4 Harv. L. & Pol’y Rev. 3, 27 (2010); Nancy C. Staudt, Taxing Housework, 84 Geo L.J. 1571, 1589 (1995). Fineman, supra note 51, at 44; see also Vicki Schultz, Life’s Work, 100 Colum. L. Rev. 1881, 1893 (2000). See generally Kathryn Abrams, The Second Coming of Care, 76 Chi.-Kent L. Rev. 1605 (2001). See generally Molly O’Malley Watts et al., Medicaid Home and Community-Based Services Enrollment and Spending, KFF (Feb. 4, 2020), www.kff.org/medicaid/issue-brief/medicaidhome-and-community-based-services-enrollment-and-spending/.

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adapt to the new locus of care, one much different from what they had experienced in state institutions.67 In 2017, these waivers covered about 4.6 million Medicaid enrollees with an expenditure totaling $82.7 billion.68 Consistent with the original Olmstead opinion that gave states leeway in administrating community-based treatment, states may limit the number of Section 1915(c) waiver beneficiaries and the populations eligible for these programs to control expansions of the program and associated costs.69 The Deficit Reduction Act of 200570 and the Affordable Care Act71 (ACA) helped ensure the vision of Olmstead by creating the Money Follows the Person Program, which Congress designed to “pay states a premium to move people out of institutions.”72 Recent developments reveal the problems with allowing states to have full discretion on how to spend the Medicaid waiver budget, as the original Olmstead opinion does. In 2019, for example, investigative journalists showed how Minnesota spends the bulk of its Medicaid waiver budget on group homes that are understaffed and create severe conditions of isolation for residents.73 This choice of spending resulted in segregation. Namely, only seven percent of Minnesotans with intellectual and developmental disabilities who received waivers lived in their own homes, whereas fortyfour percent of Minnesotans with disabilities reported living in group homes – the highest rate in the nation and more than twice the national average.74 Many people with disabilities and their family members explained that the state communicated that group homes would be the best solution for them and failed to let them know about the possibility of living at home while using HCBS.75 The substandard quality of care provided in institutional facilities has been clear for years. And yet it was the COVID-19 pandemic that made this issue front-page news.76 More than thirty-one percent of all US deaths of adults as a

67 68 69 70 71 72 73

74 75 76

Koyanagi, supra note 52, at 18. Watts et al., supra note 66. Hoffman, supra note 51, at 167; see also Eiken et al, supra note 40, at 1. Pub. L. No. 109-171, 120 Stat. 4 (codified as amended at 42 U.S.C. § 1305). Pub. L. No. 111-148, 124 Stat. 1119 (codified as amended at 42 U.S.C. § 18001). Hoffman, supra note 51, at 168. See Chris Serres & Glenn Howatt, Hidden in the Shadows StarTribune (Dec. 8, 2019), www.startribune.com/disabled-minnesota-residents-often-live-in-costly-isolation/565745352/. Id. Id. Nina Kohn, Nursing Homes, COVID-19, and the Consequences of Regulatory Failure, 110 Geo. L.J. Online 1, 5 (2021).

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consequence of COVID-19 are of residents or workers in nursing homes.77 People with intellectual-developmental disabilities living in institutional settings were faring poorly compared with the general population, with between 1.5 and 4.8 times higher risk of fatality, during the COVID-19 pandemic.78 These policy failures have highlighted the need for stricter enforcement of existing regulations designed to protect nursing home residents, for cancellation of waivers given to these institutions over the years, and most importantly, for the need to move to community-based care.79 The lives of both Olmstead plaintiffs, Lois and Elaine, following their release from the Georgia hospital, illustrate the great potential for meaningful life outside of institutions. They both developed strong friendships and communication skills, living either in a small group home or independently with a friend and a caregiver.80 While Elaine devoted a significant amount of her time to advocacy work and telling her story around the country, until her passing in 2004,81 Lois worked as an artist specializing in portraits and presenting and selling her art around the country.82 Olmstead’s legal reach might have been relatively narrow, but its greatest victory was in recognizing the horrific consequences of segregating people with disabilities in institutions and identifying this longtime practice as unlawful and discriminatory. The decision created a paradigm shift and “social leveraging power” to develop policy for implementing deinstitutionalization by ensuring access to long-term community-based care through Medicaid.83 Although promising, this policy has remained fractured, filled with gaps, and underfunded, with lawmakers assuming that family members would “pick up the slack.” A national, equitable public health policy – which Rich’s feminist rewrite could have played a pivotal role in supporting – would benefit people with disabilities, their caregivers, and society as a whole.

77

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79 80

81 82 83

Nearly One-Third of All U.S. Coronavirus Deaths Are Linked to Nursing, N.Y. Times (June 1, 2020), www.nytimes.com/interactive/2020/us/coronavirus-nursing-homes.html?smtyp=cur& smid=tw-nytimes&fbclid=IwAR1ELu0EbZ79-libLpYjcasPhIuEzmawGyBIQ3OhxLJJBb_4Lq36MTFKno. Scott D. Landes, Margaret A. Turk & David A. Ervin, COVID-19 Case-Fatality Disparities Among People with Intellectual and Developmental Disabilities: Evidence From 12 US Jurisdictions, Disability & Health J. (May 2021), https://doi.org/10.1016/j.dhjo.2021.101116. Kohn, supra note 76, at 7–10. Samantha A. DiPolito, Comment, Olmstead v. L.C. – Deinstitutionalization and Community Integration: An Awakening of the Nation’s Conscience? 58 Mercer L. Rev. 1381, 1383 (2007). Henry, supra note 6. Chambers, supra note 8. Sara Rosenbaum, Using the Courts to Shape Medicaid Policy: Olmstead v. L.C. by Zimring and Its Community Integration Legacy, 41 J. Health Pol., Pol’y & L. 585, 592–593 (2016).

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OLMSTEAD V. L.C. EX REL. ZIMRING, 527 U.S. 581 (1999)

justice becka rich delivered the opinion of the court As this case comes to us, it presents no constitutional issue, but rather a question of statutory construction. Though the original complaint included breach of the Plaintiffs’ Fourteenth Amendment due process right, neither the district court nor the Eleventh Circuit Court included these claims in its analysis. Accordingly, we follow suit. At its heart, this case concerns whether the segregation of people with intellectual or mental health disabilities into institutions constitutes discrimination under the Americans with Disabilities Act. More specifically, at issue is whether the proper construction of the antidiscrimination provision in the public services portion (Title II) of the Americans with Disabilities Act of 1990 (ADA), 104 Stat. 337, 42 U.S.C. § 12132, requires placement of people with intellectual or mental health disabilities into community-based programs rather than institutional settings whenever possible. A preference for the integration into the community of those who have been historically disadvantaged is not new for this court. In Brown v. Board of Education, 347 U.S. 483 (1954), we condemned the segregation of Black children in an educational setting. In United States v. Virginia, 518 U.S. 515 (1996), we condemned exclusionary actions toward women. In both these cases, we were concerned with the stigma that exclusion and segregation create. We are also concerned with that stigma here. We therefore affirm the decision of the Eleventh Circuit that the state of Georgia discriminated against the Plaintiffs by keeping them in a segregated institution rather than an integrated community-based program. However, we reverse as to the circumstances under which the ADA, and accompanying regulations, permit a cost-based defense. Given the funds available to the state to support community-based programs and the evidence of the lower cost of those programs compared to institutional care, a cost-based defense is not available to the state in this case. Additionally, we note that we have not typically allowed cost to be a defense to discriminatory conduct in the past, nor has Congress done so in the ADA. We order the state to provide care in the least restrictive environment appropriate to meet the plaintiffs’ needs. In determining the appropriate care, the state must consider the opinions of the plaintiffs’ treating physicians as to their medical and other needs, which services will

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best allow the plaintiffs to fully integrate into the community, and the impact on the providers of those services.

i In determining how we should interpret the ADA’s integration mandate and whether it should be applied in a way that permits a cost-related defense, it is crucial to look at the statute’s language and legislative history. Congress made it clear that the ADA was meant to be a civil rights statute, in the same vein as the Civil Rights Act, the Voting Rights Act, or the Fair Housing Act. That is, Congress did not merely intend for the ADA to make discrimination illegal, but, like the civil rights laws that came before it, to ensure that people with disabilities took their place in society along with those without disabilities. The legislative history reflects an understanding that the ADA “is a comprehensive piece of civil rights legislation which promises a new future: a future of inclusion and integration, and the end of exclusion and segregation.” H.R. Rep. No. 101-485, pt. 2, at 29 (1990). Indeed, Senator Lowell Weicker, the original sponsor of the ADA and former Chair of the Senate Subcommittee on the Handicapped, said: “We have created monoliths of isolated care in institutions and in segregated educational settings. It is that isolation and segregation that has become the basis of the discrimination faced by many disabled people today. Separate is not equal. It was not for black[s], it is not for the disabled.” Americans with Disabilities Act of 1989: Hearing on S. 933 Before the S. Comm. on Lab. & Hum. Res. & Subcomm. on the Handicapped, 101st Cong. 821 (1989). As the American Psychiatric Association points out in its amicus brief filed with this Court, “a powerful stigma often attaches to those who are separated from society – even when separation is ‘only’ the price of receiving services that, for the individual, are practically unavoidable.” Br. Amici Curiae for the American Psychiatric Association & the National Alliance for the Mentally Ill Supporting Respondents at 20. As a broad-reaching civil rights statute, the ADA covers discrimination in employment (Title I), public services (Title II), and public accommodations (Title III). This case concerns Title II of the ADA and the regulations promulgated by the Department of Health and Human Services (HHS) under Title II. Title II states: “no qualified person with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.” 42 U.S.C. § 12132. At issue is whether placement in an institution rather than in a community-based setting, where

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community care would be medically appropriate, constitutes discrimination under the ADA. Three elements are required to establish discrimination under Title II. First, the individual must be a qualified individual with a disability. Second, the conduct must result in exclusion of the person with a disability from the services, programs, or activities of a state or local government. And third, the discriminatory conduct must be because of the individual’s disability. The ADA built on the Rehabilitation Act, as well as the Developmentally Disabled Assistance and Bill of Rights Act. Rehabilitation Act of 1973, 87 Stat. 355, 29 U.S.C. §§ 701 et seq.; Developmentally Disabled Assistance and Bill of Rights Act, 89 Stat. 486, 42 U.S.C. §§ 6001 et seq. These more limited statutes focused on integration through removing barriers to employment. This included removing architectural barriers and increasing access to public transportation and education. Removing all these barriers came at considerable cost to both states and private companies, but doing so was essential for integration to become a reality. The state provides most treatment for people with serious mental illness and intellectual disabilities who cannot afford to pay for their own care by using Medicaid funds. Medicaid, as originally written, provided funding for only institutional-based care. 42 U.S.C. §§ 1396 et seq. As Congress wrote laws to promote the deinstitutionalization of people with disabilities, it also created the Section 1915(c) Medicaid waiver program, which allows funds that would have been used for institutionalization to instead be used for communitybased care, provided that the cost remains the same or lower. Pub. L. No. 9735, § 2176, 95 Stat. 357, 812–813 (1981) (codified as amended at 42 U.S.C. § 1396n(c)). The Section 1915(c) Medicaid Waiver program allows for states to provide home and community-based services to elderly or disabled persons who need long-term care but would benefit from receiving these services in their own home or community rather than in an institutional setting. 42 U.S.C. 1396n(c); 42 C.F.R. §§ 430.25(c)–(d), 440.180, 441.300 et. seq.; SMM §§ 4440 et. seq. We now turn to the facts of this case.

ii Lois Curtis (twenty-seven years old, African American) and Elaine Wilson (forty-three years old, Caucasian) are residents of Georgia who have dual diagnoses of intellectual and mental health disabilities and very limited financial capabilities. Ms. Curtis has a diagnosis of schizophrenia, and Ms. Wilson has several mental health diagnoses. Both Ms. Curtis and Ms. Wilson were placed in locked psychiatric wards due, initially, to episodic flare ups of

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their respective mental illnesses. See Petition for Writ of Certiorari app. 32a– 33a. Ms. Curtis and Ms. Wilson were both initially admitted to the psychiatric wards voluntarily. J.A. at 2. Since age fourteen, Ms. Curtis has spent almost half of her life in psychiatric institutions including Georgia Regional Hospital (GRH), losing the opportunity to go to school with her friends or live with her family. The average length of stay at GRH is three weeks. Ms. Curtis resided there, most recently, for over three years. J.A. at 12–13. For five years, Ms. Wilson resided primarily at GRH excluding the short periods of time – in one case less than a day – in which she lived in boarding homes or personal care homes. J.A. at 62. Both Ms. Curtis and Ms. Wilson also had multiple prior psychiatric hospital admissions. J.A. at 13, 14, 64. The psychiatric teams for both Ms. Curtis and Ms. Wilson concluded that it would be better for each to receive services in community-based care once they were stabilized. Petition App. 33a; J.A. at 5, 46, 213–214; Petition App. 2a–3a n. 2. Ms. Curtis brought the initial complaint to the US District Court for the Northern District of Georgia in May 1995. She argued that her confinement in an institutional setting, after her psychiatric care team determined that she would be better placed in community-based care, violated her rights under both the ADA and the Fourteenth Amendment. J.A. at 2. Specifically, she claimed that her rights guaranteed by the above statutes to minimally adequate treatment, freedom from undue restraint, freedom from illegal discrimination, and placement in the most integrated setting appropriate to her needs were violated. Ms. Curtis sought an injunction requiring state officials to release her from the state mental hospital into an appropriate community care facility where qualified professionals could provide her suitable treatment. See App. to Petition for Writ of Certiorari 32a–41a. State officials noted that no community-based, Medicaid-funded options were available at the time that Ms. Curtis’ and Ms. Wilson’s treatment plans changed to community-based care. Two and a half months after the action commenced in the district court, Ms. Curtis was discharged, pursuant to a consent order, to a Medicaid-funded community support program where she did not receive appropriate supports and was at a high risk of returning to the state mental institution, as had happened several times in the past. App. to Pet. For Cert. 33a. The state noted that funding for community-based programs for Ms. Curtis and Ms. Wilson was available under Medicaid’s Mental Retardation Waiver Program where the state provides forty percent of funding and the federal government provides sixty percent of funding. The district court granted Ms. Wilson’s motion to intervene in the proceedings in January 1996. Ms. Wilson also claimed that she was unnecessarily and inappropriately confined, and she desired release into a community-based

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residential program. App. to Pet. For Cert. 33a. Similarly, the state said that no community-based Medicaid-funded slots were available when Ms. Wilson’s care plan changed. Both Ms. Wilson and Ms. Curtis, as plaintiffs, and the State of Georgia, as defendant, filed motions for summary judgment. Ms. Wilson and Ms. Curtis argued that segregating them unnecessarily in a mental institution was unlawful discrimination on the basis of their respective disabilities under the ADA. They also argued that the state failed to provide them minimally adequate treatment and habilitation and freedom from undue restraint in violation of the Due Process Clause of the Fourteenth Amendment. The defendant argued that Ms. Curtis’ claims were moot because she was already receiving treatment in an adequate community placement. They further contended that Ms. Wilson’s ADA rights were not violated because she had been denied community placement due to budgetary constraints on Medicaid-funded care rather than her disability. Finally, the defendant argued that Ms. Wilson’s rights under the Due Process Clause were not violated because the decision to treat her at the state mental hospital rather than in a community placement was the result of professional judgment. App. to Pet. For Certiorari. 32a–35a. The district court granted Ms. Wilson’s and Ms. Curtis’ motion for summary judgment on the ADA claim, declaring that the failure to place Ms. Curtis and Ms. Wilson in a community setting violated the ADA. They based this decision on the ADA’s Title II antidiscrimination provision for public services and its accompanying regulations. The court granted declaratory and injunctive relief, requiring that the state release Ms. Wilson to an appropriate community-based treatment program and that Ms. Curtis be provided with all appropriate services to maintain her current community placement. The district court did not reach the due process claim because they found it moot in light of the summary judgment on the ADA claim. App. to Petition for Certiorari 41a. The defendant appealed the case to the US Court of Appeals for the Eleventh Circuit. The Eleventh Circuit agreed that the state had discriminated against Ms. Curtis and Ms. Wilson, as prohibited by the ADA, when it failed to place them in more integrated settings. The circuit court then remanded the case to the district court for further findings based on an available defense under a regulation interpreting the ADA – that providing a more integrated setting on demand would be a fundamental alteration of their program. The state noted that limited funding for community-based care under Medicaid would require prioritizing the needs of some people with disabilities over others. App. to Petition for Certiorari 4a. The relevant regulation provides: “A public entity shall make reasonable modifications in policies,

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practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program, or activity.” 28 CFR § 35.130(b)(7) (emphasis added). On remand, the district court granted a motion to limit the issue regarding the cost of providing care to Ms. Wilson and Ms. Curtis to whether such costs would fundamentally alter the state’s program of care to people with disabilities within the state. 1:95-cv-1210-MHS (N.D. Ga. Jan. 29, 1999), p. 1; J.A. at 176. An appeal of that decision is currently pending before the Eleventh Circuit. We granted certiorari because of the importance of the questions presented here to the individuals and to the states, as evidenced by the fact that twentytwo states and the Territory of Guam joined a brief urging that certiorari be granted and ten of those states joined a brief in support of the defendantpetitioners on the merits. We will now address each of the defendant-petitioners’ arguments in turn.

iii A The defendant has argued that the plaintiffs were denied access to community-based placements because of budgetary constraints, not their disabilities. The district court ruled that cost was not a defense to discrimination under the ADA, and that cost, beyond that of providing care on an individual basis, could not be included in the consideration of a fundamental alteration defense to discrimination. The circuit court agreed that the state had violated the rights of Ms. Curtis and Ms. Wilson, but it said that cost could be a defense to discrimination in this case. We disagree. In other cases regarding integration, we have not considered cost to be an appropriate defense to segregation. As we explain below, the state has options to finance community-based services through federal support within its Medicaid program. While we are cognizant of the need to provide care for all citizens, in cases where community-based care is both appropriate for and desired by people with disabilities, the ADA does not permit states to limit their access to needed services in the most integrated environment based on cost considerations alone. 28 CFR § 35.130(b)(7) provides a defense that the state may avail itself of, that of “fundamental alteration” to their programs. This standard is appropriately set high, as it is for all civil rights violations when a disadvantaged group of people whom Congress intended to protect is

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involved. Given that funds that are not available for institutional-based care are available to the state for community-based care and given the history of cost not being a defense in civil rights cases, we agree with the district court. The cost of community-based care for Ms. Curtis and Ms. Wilson would need to be exorbitant to successfully meet the definition of “fundamental alteration” under the ADA. Historically, we have not allowed concerns about lack of funding, administrative burden, or convenience to stand as a justification for not properly implementing civil rights statutes. We acknowledge the petitioners’ point that deference to states with regard to implementing programs and making political decisions as to costs is warranted. That deference does not extend, however, to permitting states to act in a discriminatory manner contrary to the command of Congress. The integration regulations implementing Title II of the ADA require public entities to make reasonable modifications in existing programs in order to avoid discrimination under the statute: “A public entity shall make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program, or activity.” 28 C.F.R. § 35.130(b)(7). The Justice Department has also consistently interpreted the ADA and its implementing regulations to support the contention that unnecessary segregation of people with disabilities is discrimination and their interpretation is entitled to deference. Thomas Jefferson Univ. v. Shalala, 512 U.S. 504, 512 (1994); Univ. Health Servs., Inc. v. Health & Hum. Servs., 120 F.3d 1145, 1150 (11th Cir. 1997). The defendant-petitioners have argued that forcing states to provide more than a hospital bed on demand – which the Medicaid statute requires – violates their authority to determine which services to provide and how much of each service should be provided. Br. for Pet’rs 3. The defendant-petitioners also rely heavily on Pennhurst State Sch. & Hosp. v. Halderman, 451 U.S. 1 (1981). In Pennhurst, we found that the Developmentally Disabled Assistance and Bill of Rights Act did not require that people with intellectual disabilities always be placed in the least restrictive setting, regardless of other factors, such as cost. However, the language of the ADA is stronger than the language of the statute at issue in Pennhurst. While the court in Pennhurst found that the Developmentally Disabled Assistance and Bill of Rights Act relied primarily on Congress’ spending powers, the ADA is explicit about relying primarily on Congress’ powers under the fifth clause of the Fourteenth Amendment and secondarily under the Commerce Clause of the Constitution. Americans with

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Disabilities Act of 1990, 42 U.S.C. § 12101(b)(4); Pennhurst, 451 U.S. at 3. It is time that we, like Congress, affirm the importance of placement in the least restrictive setting. As the Eleventh Circuit pointed out, the ADA tracks Title VII of the Civil Rights Act with regard to the discriminatory effect of actions that are due to neglect or past practice rather than animus: “the absence of a malevolent motive does not convert a facially neutral policy into a neutral policy. . . .” Int’l Union, UAW v. Johnson Controls, 499 U.S. 187, 199 (1991). As noted by the House Judiciary Committee: [t]he fact that it is more convenient, administratively or fiscally, to provide services in a segregated manner does not constitute a valid justification for separate or different services under Section 504 of the Rehabilitation Act, or under this title. . . The existence of such programs can never be used as a basis to . . . refuse to provide an accommodation in a regular setting.

H.R. Rep. No. 101-485, pt. 3, at 50, reprinted in 1990 U.S.C.C.A.N. at 473.

B It would be difficult for the state to demonstrate that placing Ms. Curtis and Ms. Wilson in a community-based treatment setting would fundamentally alter the nature of the provision of state services to people with mental health or intellectual disabilities. The record shows that it is less costly to provide services in a community-based program than in an institution. The amicus curiae brief of fifty-eight former state mental health commissioners notes that Pennsylvania and Maryland have estimated that the move from predominantly institution-based care to community-based care for people with disabilities will save their states significant amounts of money. Amicus Curiae Br. of 58 Former State Commissioners & Directors of Mental Health & Developmental Disabilities et al. The district court found that this was also true for Georgia. Petition for Writ of Certiorari 39a. Moreover, the plaintiffs point out that under Georgia law, the state has the authority to transfer funds between institutional and community-based treatment programs based on need. O.C.G.A. § 37-2-5.1(c)(3). The Section 1915(c) Medicaid waiver program is being underutilized in Georgia. As the plaintiffs note, pursuant to a Section 1915(c) waiver, Georgia currently has an agreement with HHS to provide up to 2,109 community-based placements, but it is only using 700 of those. J.A. at 93. Georgia did not argue that providing community-based services to Ms. Curtis and Ms. Wilson would constitute a fundamental alteration of the

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provision of care to individuals with disabilities by requiring the state to dismantle the provision of institution-based care. For a public entity to show fundamental alteration, it must prove that, in the allocation of available resources, immediate relief for the plaintiffs would be inequitable, given the responsibility the state or local government has taken for the care and treatment of a large and diverse population of persons with disabilities. The burden falls on the public entity to prove that the modification would fundamentally alter its services. In this case, the record shows that it is less costly to provide services in a community-based program than in an institution. The Amicus Curiae Brief of 58 Former State Mental Health Commissioners notes that Pennsylvania and Maryland have estimated that the move from predominantly institution-based care to community-based care for people with disabilities will save their states significant amounts of money. Amicus Curiae Br. of 58 Former State Commissioners and Directors of Mental Health and Developmental Disabilities et al. The district court found that this was also true for Georgia. Petition for Writ of Certiorari 39a. Therefore, the state’s argument for not placing Ms. Curtis and Ms. Wilson into community-based programs due to cost does not meet the ADA’s criteria for a fundamental alteration defense. C While this case was not brought under the Medicaid Act, this court would be remiss to ignore the vital role that the Act has played in this case. Both plaintiffs applied for and were denied community-based placements due to a lack of Medicaid funds. Further, the defendant-petitioners note that the Medicaid Act of 1965 expresses a policy preference for treatment in institutions over treatment in the community. Reply Br. 6; 42 U.S.C. §§ 1396 et seq. They argue that the language of Title II of the ADA cannot be read to repeal or displace the more specific provisions of the Medicaid Act. It is impossible to fully understand the weight of these arguments without first addressing the basics of how Medicaid operates. The Medicaid Act was enacted as a companion to Medicare and was meant to provide medical care and related services to low-income individuals. Medicaid operates as an openended entitlement program with a generous federal match to supplement state funds, subject to conditions on how the federal funds may be used. For every one dollar of state funding, Medicaid provides two dollars in matching funding. Unlike Medicare, Medicaid provides funding for and regulates long-term institutional care. Also, unlike Medicare, Medicaid is jointly financed and administered by the states and the federal government.

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Federal Medicaid law provides an open-ended commitment to match state funding with federal dollars. States accepting Medicaid funds (as all states do) agree to fulfill various federal requirements. The defendant-petitioners note that under the Medicaid Act, states are mandated to provide institutional care, specifically a hospital bed on demand. 42 U.S.C. §§ 1396(a)(10)(A). In contrast, states are permitted (pursuant to the Section 1915(c) waiver program described below), but not required, to provide community placements. These community placement waivers are limited by the number of slots made available, the defendant-petitioners argue, while institutional slots must be made available on demand. 42 U.S.C. § 1396(a)(8); Doe v. Chiles, 136 F.3d 709 (11th Cir. 1998). Waivers are allowable, provided the cost of community-based services are, on average, less than or equal to the cost of institutionalized care. The slots granted by the waiver are determined state-by-state and are partially determined by the application the state makes to the federal government. The defendant-petitioners’ argument does not fully capture the extent to which Congress and the HHS have revised the Medicaid program to promote more long-term care in more integrated settings. Pub. L. No. 97-35, § 2176, 95 Stat. 357, 812–813 (1981), codified as amended at 42 U.S.C. 1396n(c). Congress showed its intention to transition toward integrated care by creating the Home and Community Based Services Waiver Program in 1981 to allow states to provide home or community-based services to individuals with intellectual disabilities, elderly low-income individuals, or others who would otherwise require institutional care. Pub. L. No. 97-35, § 2176, 95 Stat. 357, 812–813 (1981), codified as amended at 42 U.S.C. 1396n(c). Waiver programs allow the HHS to waive certain Medicaid requirements so that states can allocate resources to, for example, only the population of people who would otherwise need institutionalization, without having to provide services to people who would not. Additionally, these waivers allow states to cover non-medical services to help avoid institutionalization such as case management, medication management, supported housing, and personal care. Pub. L. No. 97-35, § 2176, 95 Stat. 357, 812–813 (1981) (codified as amended at 42 U.S.C. 1396n(c)). In 1986, Congress expanded the waiver program to cover some communitybased services for individuals with chronic mental illness. Pub. L. No. 99-509, § 9411, 100 Stat. 1874, 2061–2052 (1986). Medicaid usually does not cover institutional care for those with mental illness unless those individuals are over sixty-five or under twenty-one years of age. 41 U.S.C. § 1396d(a)(27)(B), (a)(14), (16). In a 1992 report to Congress, HHS recommended that this exclusion remain in place because community-based care was typically more cost-effective. US Department of Health and Human Services, Health Care

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Financing Administration, Report to Congress, Medicaid and Institutions for Mental Diseases (1992). Like many with similar disabilities, the plaintiffs are in need of long-term care. This Court does not find the state’s argument that it is easier to provide long-term care in institutions than home and community-based services to be particularly persuasive. Rather than being solely dependent on their own resources to support deinstitutionalization, states have the option to take advantage of federal funding under the Medicaid program. Contrary to the defendant-respondents’ assertion, federal spending under the Medicaid program supports deinstitutionalization. States should make use of all available Medicaid options to extend care to people with disabilities in the community, where desired and medically appropriate. If states find that the existing Medicaid program does not provide adequate federal support to assist them in meeting their obligations under the ADA, they should petition Congress to revise the program accordingly. To fulfill the ADA’s mandate, states must pursue deinstitutionalization in all medically appropriate cases.

iv While Congress did not address the needs of caregivers when passing the ADA, it is worth discussing this issue given the impact on caregivers due to the high demands placed on state budgets by the deinstitutionalization mandate. A mandate for a placement in a community setting, rather than an institutional setting, when medically appropriate and desirable, not only meets the core goals of the ADA but also benefits those who care for individuals with mental health and intellectual disabilities. Currently, a caregiver in Georgia – such as Ms. Curtis’ mother, who is mentioned in the record – has two less than desirable options. They can either have their loved one in an institution – a situation where they will receive necessary care to address mental health issues, but their connection to the community and skills may atrophy – or care for their loved one at home – a situation which can be taxing to the caregiver and fail to give the person with the disability much needed integration into society. Additional community care placements and home-based services give both people with disabilities and their caregivers more opportunities to thrive and participate in activities other than caregiving as a result. The data that shows that the need for long-term care is hard on not just the person who needs the care but also those who provide care for them is extensive. Those who provide informal care for family miss out on both economic and social opportunities. Better allowing those informal caregivers to integrate into the community, and thereby avoid burnout, will increase

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their ability to provide high quality care. In turn, states giving caregivers the ability to integrate in the community allows people with disabilities the opportunity to integrate with the community as envisioned by the ADA. When states provide home and community-based services, it is essential that they consider which services are necessary to allow both people with disabilities and their caregivers to be fully present in the community and avoid segregation.

v While such a determination is fact-based at the individual level, this Court can offer some guidance to the courts below on what to consider in determining whether a “fundamental alteration” defense is appropriately granted. The lower court should consider whether providing the community-based services necessary for societal integration for the plaintiffs and their caregivers would require a substantial change to the services provided by the state in light of the state’s overall budget for providing services. The lower court should also consider whether the state has a comprehensive plan to move individuals with mental disabilities, for whom communitybased care is both medically appropriate and desired, into appropriate placements quickly and with all due speed. Such a plan should consider all the options available to the state under Medicaid’s waiver programs. Given the guidance from HHS and the Attorney General, a desire to keep institutional beds full and institutions fully staffed should not impede the ability of individuals with disabilities to get the care that they need in a setting that allows them to be as fully integrated within society as possible. Such a comprehensive plan would meet the “reasonable accommodation” standard. The plan should also minimize the time necessary to either move people into more appropriate placements or provide the necessary services in a home environment. A waiting list is not an appropriate remedy. We hold that under Title II of the ADA, institutionalization of those with mental disabilities, for whom community care is medically appropriate and desired, constitutes discrimination. This holding is not meant to direct states to override the judgment of treating professionals who are in the best position to determine if a community-based placement is appropriate for the individual with a disability. Of course, the State of Georgia should also respect the judgment of the person with the disability, who may prefer an institutional setting, or, due to their personal history, may not be suited to life outside of an institution. If the individual’s treatment plan or needs do not require an institutional setting, the

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ADA imposes a duty to provide treatment and services in the most integrated setting appropriate to the individual’s needs. This will typically be communitybased. As the needs of people with disabilities change, the appropriate setting may change. The ADA does not prohibit such changes. Therefore, under the ADA, the state must provide placement in the most appropriate integrated setting, unless the state can show that doing so would require a “fundamental alteration” in the state’s provision of services. It is equally important here also to define what “institutionalization” means. “Institutionalization” for the purpose of this ruling is defined as long-term placement in a facility of over sixteen people, due to the disability of the patient, that is not medically necessary and does not provide regular integration services with the community. The following institution-based treatments do not constitute confinement to an institution for the purpose of this ruling: medically indicated treatments with the informed consent of the patient or short-term court-ordered confinement because the patient is a danger to themselves or others.

vi For all of the reasons stated, we conclude that, under Title II of the ADA, states that opt to provide long-term care for individuals with mental health and intellectual disabilities are required to provide that treatment in the least restrictive setting possible, when the individual’s treating physician and other professionals determine that such placement is appropriate and the affected individual does not oppose placement in a community-based program. Courts should only permit a fundamental alteration defense when it is not limited to cost considerations alone. Factors that might be appropriate to consider as a fundamental alteration are those that would change the level of integration with the community or those non-cost-based factors that would otherwise adversely impact the people that the services are designed to help. The judgment of the Eleventh Circuit is therefore affirmed as to the failure to move Ms. Curtis and Ms. Wilson into a community-based setting, constituting a violation of the ADA’s mandate to provide services in the least restrictive setting possible, but reversed as to cost constituting a fundamental alteration.

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9 Commentary on Doe v. Mutual of Omaha christina s. ho

background Doe v. Mutual of Omaha1 was decided in 1999, more than a decade before the Affordable Care Act2 (ACA) specifically prohibited health insurance companies from discriminating on the basis of gender, disability, or health status-related factors in their decisions about who and what to cover. Thus, when two HIV-positive residents of Chicago (“John Doe” and “Richard Smith”) sought to hold their health insurance company responsible for their differential access to HIV/AIDS-related care, their best available avenue for doing so was the Americans with Disabilities Act3 (ADA). The plaintiffs argued that Mutual of Omaha’s contract term capping policy benefits for medical care for AIDS or AIDS-related conditions (ARC) at $100,000 (or even $25,000 in one instance) when all other care was capped at $1 million violated Title III of the ADA, which prohibits disability discrimination by public accommodations. The defendant insurance company conceded that Title III regulated “insurance offices,” and it also conceded that the plaintiffs were disabled for the purposes of the ADA.4 The dispute between the parties therefore focused on one key issue: Does the ADA’s prohibition on discrimination by “insurance offices” against people with disabilities reach benefit designs that differ based on the particular disabling condition? Judge Richard Posner, writing for the majority of a three-judge panel of the US Court of Appeals for the Seventh Circuit, rejected the plaintiffs’ claims. Posner held that the defendant’s differential AIDS caps did not violate the

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179 F.3d 557 (7th Cir. 1999). Pub. L. No. 111–148, 124 Stat. 119 (codified as amended at 42 U.S.C. § 18001). Pub. L. No. 101–336, 104 Stat. 327 (codified as amended at 42 U.S.C. § 12101). 42 U.S.C. § 12181(7).

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ADA’s prohibition on discrimination in public accommodation because the ADA regulates “access to” but not the “content of” insurance policies. Essentially, in Posner’s view, as long as the defendant is willing to sell a policy to a disabled person, it satisfies the ADA, even if the content of that policy draws a distinction between what is covered and what is not based solely on the plaintiff’s disability. Posner drew aid and comfort for this truncated reading of the ADA in part from a McCarran-Ferguson Act5 provision disfavoring any federal statutory construction that would potentially “impair” state insurance laws unless the federal statute at issue (in this case, the ADA) “specifically relates to the business of insurance.”6 Most disputes over the coverage provided by health insurance make for hard cases. Drawing lines between what is and is not covered by a health insurance policy is tricky business for judges. To ask judges to tease out whether a health insurer’s line drawing reflects preferences that the judge must take as givens under “free market” ideology, or whether it constitutes unlawful discrimination instead is fraught with peril. But this case should have been different. The striking oddity of Judge Posner’s decision in Doe v. Mutual of Omaha is that of all the coverage distinctions health insurers draw, the defendant’s AIDS caps should have been the rare, easy case. The ADA alone, without the more specific provisions Congress eventually included in the ACA, provided ample basis for ruling in the plaintiffs’ favor. One need only ask “why HIV/AIDS?” Why does the market offer health insurance policies that collectively pool the risk of medical expense from cancer – spreading the costs among people with the condition and those without – but fail to do so for HIV/AIDS?

Health Insurance Discrimination in the Pre-ADA Era The anti-AIDS animus that the plaintiffs challenged in Doe v. Mutual of Omaha was regarded, by and large, as perfectly legal in the decades prior to the ADA. Even discrimination on the basis of sex and race were largely unregulated in private insurance and surprisingly remained so until 2010. While at the federal level, Title VII prohibited sex discrimination, it regulated only in the employment context, leaving individual insurance subject to public accommodations law, which did not (and still does not) contain a comparable provision. As Liz Sepper and Deborah Dinner have written, this

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15 U.S.C. §§ 1011–1015 (1945). 15 U.S.C. § 1012(b).

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lacuna in public accommodations law spurred the feminist activism of the late 1960s and 1970s.7 At the time Doe v. Mutual of Omaha was decided, not only was federal law outside the ADA unavailing, but so was applicable state law. Ronen Avraham, Kyle Logue, and Daniel Schwarcz have documented how little existed, and indeed how little exists still, in the way of protection by states.8 In their comprehensive survey of state insurance antidiscrimination laws, they found that even as of 2013 “more than half the states do not ban the use of race in life, health and disability insurance.”9 For a federal civil rights law to have modified this state backdrop, it would have had to “specifically relate to the business of insurance”10 under the McCarran-Ferguson Act, but judges deemed the civil rights laws too general and therefore unable to survive McCarranFerguson’s so-called reverse-preemption. Beyond suspect classifications, state laws were also weak on private insurance underwriting based on health status.11 They addressed risk discrimination, if at all, through vague language limiting “unfair discrimination,” which was often not defined.12 In 1996, the federal Health Insurance Portability and Accountability Act13 (HIPAA) limited some exclusions and refusals to sell to people with preexisting conditions,14 but did not reach situations like the one the plaintiffs challenged in Doe v. Mutual of Omaha.

The ADA When the ADA was passed in 1990, against this backdrop of inadequate state and federal protections, many believed it would prove a transformative event. Some, including Paul Stevens Miller of the Equal Employment Opportunity 7 8

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Elizabeth Sepper & Deborah Diner, Sex in Public, 129 Yale L.J. 1 (2019). See generally Ronen Avraham et al., Understanding Insurance Anti-Discrimination Laws, 87 S. Cal. L. Rev. 195 (2014). 42 U.S.C. § 18116(a); see also Avraham et al., supra note 8, at 5, 34 (noting that only nine states have forbidden the use of race, national origin across all lines of insurance, and Louisiana actually explicitly permits the use of race in life insurance). 15 U.S.C. § 1012(b) (“No Act of Congress shall be construed to invalidate, impair, or supersede any law enacted by any State for the purpose of regulating the business of insurance . . . such Act specifically relates to the business of insurance.”). Timothy Jost, The Regulation of Private Health Insurance, Nat’l Acad. Soc. Ins., 19 (Jan. 2009). See also Ronen Avraham, Kyle Logue & Daniel Schwarcz, Toward a Universal Framework for Insurance Anti-discrimination, 21 Conn. Ins. L.J. 1 (2014). Pub. L. No. 104–191, 110 Stat. 1936 (codified as amended at. 42 U.S.C. § 201). Jost, supra note 11, at 19, 29; see also 42 U.S.C. § 300gg–42, 300gg–11 to –12; Mary Crossley, Discrimination against the Unhealthy in Health Insurance, 54 Kan. L. Rev. 73 (2005).

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Commission (EEOC), hailed the ADA as announcing a “new paradigm” of civil rights, because “the traditional civil rights model of treating people ‘exactly the same’ does not apply to disability discrimination.”15 Sandra Levitsky notes that “[t]he ADA departs in many respects from previous civil rights laws . . . because the reasonable accommodation provision . . . requires employers to take account of an individual’s disabilities and to provide special treatment for that reason.”16 The radical potential of the ADA lay in its rejection of mere formal equality, a view of equality as “leveling the playing” field by treating all the same, without also inquiring into the substantive impact on a truly “accessible playing field.”17

Medical Justifications for Coverage Limits in the Pre-ACA Era At the time that Doe v. Mutual of Omaha was decided, before the ACA was passed to specifically prohibit discriminatory health insurance policy designs, legal norms accommodated private health insurance companies’ use of categorical exclusions for coverage limits. A recurring question was whether a particular treatment that is covered for certain diagnoses must be covered for other diagnoses or indicated uses as well. In Medicaid, at least, agency and judicial interpretations restricted states from “arbitrarily deny[ing] or reduc [ing] the amount, duration, or scope of [services to an otherwise eligible individual] solely because of the diagnosis, type of illness or condition.”18 In the private market, though, insurers could and did sometimes win cases defending contract terms that excluded benefits for certain diagnoses.19 Diagnosis-based distinctions withstood judicial scrutiny because there are, in theory, rational grounds to justify differential medical treatment, and therefore differential coverage, of distinct diagnoses. For instance, starting in the late 1980s, high dose chemotherapy with autologous bone marrow transplant (HDCT/ABMT) was widely prescribed for breast cancer, though the regimen had previously been used successfully for only certain blood

15

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17 18 19

Paul Steven Miller, Disability Civil Rights and a New Paradigm for the Twenty-First Century, 1 U. Pa. J. of Lab. & Emp. L. 511, 514 (1997). Sandra Levitsky, Reasonably Accommodating Race: Lessons from the ADA for Race-Targeted Affirmative Action, 18 L. & Inequality 85, 103–106 (2000). Miller, supra note 16, at 514–515. 42 C.F.R. § 440.230 (2012); see also Weaver v. Reagen, 886 F.2d 194 (8th Cir. 1989). Bedrick v. Travelers Ins., 93 F.3d 149 (4th Cir. 1996) (affirming in part plan denial of speech therapy for child who had never spoken at all because speech therapy was covered only to “restore speech”).

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cancers.20 Randomized clinical trials later failed to show any therapeutic benefit for breast cancer, but 30,000 women had already suffered under the application of this punishing regimen.21 A restriction of this treatment solely to proven applications is justified and courts, though initially reluctant, have since recognized this distinction.22

original opinion Posner’s goal in the original opinion was to establish that a facial coverage distinction on the basis of a person’s HIV/AIDS status, which the defendant conceded was a disability, is nevertheless not prohibited disability discrimination. The nakedly hegemonic function of Posner’s opinion makes it a particularly strong case for rewriting from a flipped gaze. In many ways, it represents a high-water mark for a particular maneuver that feminist and critical scholars seek to unmask: the centering of the straight, ableist perspective, while invoking the ideology of market autonomy to sanitize animus and claim neutrality for arrangements that happen to favor one’s own traits. The endowment of markets with moral quality, as reflected in the moniker “free” markets, while allowing this ideology to shield the preferences of market actors as black box “givens,”23 work together to deflect attention from the question, “why HIV/AIDS?” and thereby legitimate stigmatization. Posner’s opinion shows how hard he struggled to submerge the key question of why the defendant’s insurance policy singled out HIV/AIDS in particular. His tool kit featured two initial strategies to avoid grappling with the ADA’s anti-subordination aim. First, he mobilized medical justifications to defend Mutual of Omaha’s AIDS caps as based on diagnosis, rather than on disability. Second, Posner tried to steer insurers’ ill-starred passage toward Congress’ safe harbor for economically justified insurance practices. In final desperation, Posner resorted to a third strategy: a textual reliance on the ideology of autonomy for market actors, a strategy that has implications for equal access to women’s health services even today. 20

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Richard Rettig et al., False Hope: Bone Marrow Transplantation for Breast Cancer (2007). Id. Holder v. Prudential Ins. Co. of Am., 951 F.2d 89 (5th Cir. 1992); Hilliard v. Bellsouth Med. Assistance Plan, 918 F. Supp. 1016 (S.D. Miss. 1995). But see Henderson v. Bodine, 70 F.3d 958 (8th Cir. 1995). See Samuel Moyn, The Nudgeocrat: Navigating Freedom with Cass Sunstein, Nation (June 23, 2019), [https://perma.cc/W46F-L94A], for a recent and admirably concise statement in the popular press about this aspect of market ideology.

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Mobilizing Medical Justifications for Coverage Limits: Posner’s First Strategy Posner strove to characterize the coverage distinction as based on diagnosis (rendering it consistent with the medical justifications courts had accepted in past cases, as described above) rather than based on disability. Perhaps in this vein, he proffered the example of the psychiatrist who does not treat schizophrenia, a treatment exclusion that Posner regarded as self-evidently permissible. But he recognized that this exclusion could be either for medical reasons (such as clinical specialization) or for non-medical reasons (such as animus). This realization pushed him to invoke a market entrant’s unquestioned autonomy over what they choose to sell. Market autonomy is the crucial fallback argument for jurists seeking to justify subordination, as discussed below.24 Posner had trouble mapping Mutual of Omaha’s AIDS caps onto a medical justification because the benefits specific to a diagnosis of AIDS were not as distinct as he may have imagined from the benefits relating to other diagnoses covered by the policy. Treatment of AIDS, as an immune deficiency, consists in large part of treating opportunistic infections that many HIV-negative persons may contract as well.25 The treatments employed for HIV-negative patients may well be clinically appropriate and effective for enrollees with AIDS as well but were nevertheless differentially capped under the contested policy. Thus an antifungal to treat candidiasis would be subject to the cap for people living with HIV, but far less restricted for other beneficiaries. Thus, despite Posner’s efforts, the cap challenged in Doe v. Mutual of Omaha was not an automatically rational distinction based on diagnosis or condition; it was an invidious discrimination against people living with AIDS. Its discrimination goes to the person by excluding them from social risk pooling to collectively finance health care costs at a time when fear and stigmatization of HIV and homosexuality were at a peak.26 Posner failed, it seems, to satisfy even himself that the “distinctiveness” of opportunistic infections in the treatment of HIV/AIDS fully rationalized the exclusion of HIV-positive patients from coverage for those treatments. He

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Doe v. Mut. of Omaha Ins., 179 F.3d 557, 560 (7th Cir. 1999). Kent A. Sepkowitz, Opportunistic Infections in Patients with and Patients without Acquired Immune Deficiency Syndrome, 34 Clin. Infectious Disease 1098 (2002). Katy Chi-Wen Li, The Private Insurance Industry’s Tactics against Suspected Homosexuals: Redlining Based on Occupation, Residence and Marital Status, 22 Am. J.L. & Med. 477, 496 (1996) (describing the interrelated discrimination against those with HIV and homosexual men).

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recognized that at least some HIV-negative patients received coverage for like treatments for those infections.27 This nagging imperfection of fit meant the opinion could not rest on medical justifications alone. More work was needed to prove that the insurance distinction was not tantamount to writing HIVpositive individuals out of the risk pool based on disability. Exclusion from the risk pool, after all, looks like discrimination in “access” to the product of health insurance, which Posner conceded was prohibited under a commonsense reading of the ADA. By contrast, failure to provide a specific scope of coverage (adequate AIDS coverage), while providing meaningful access to a policy that covered at least some other benefits, more closely resembles an adventitious choice of “content,” such as what a store might elect when deciding what inventory to carry. But to avail himself of this argument, Posner had to cite some benefits that could still be shared “equally” with individuals despite their HIV status. He cast about for a medical treatment that would not be differentially denied to people living with HIV, which was no easy task given that immune disorders are systemically connected with nearly all of a person’s medical care. Posner declared with evident relief that treatment for a broken leg, at least, would not fall under the disparate AIDS cap. With that, he announced that insurance, even with a differential cap, was equally accessible for people with AIDS and those without because it offered at least some product “content” to people with AIDS even if it did not cover adequate AIDS treatment itself. Posner never explained why “content,” or the terms of the insurance contract, should remain open to a cap motivated by any impulse whatsoever. He simply imputed this choice to congressional fiat. Posner cemented what was then an emerging interpretation of the ADA that only requires so-called meaningful access to benefits, but does not require plans to offer equal benefits for conditions. He thus cut off the original promise of the ADA to inaugurate a substantively accessible and inclusive, rather than a merely formally level playing field.28

Mobilizing Economic Justifications for Coverage Limits: Posner’s Second Strategy To defend his vision of the ADA as requiring mere formal equality, Posner had to rebut a key piece of textual evidence that would otherwise have thrown his reading into doubt. Section 501(c) of the ADA specifically grants insurance 27

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Doe, 179 F.3d at 561 (revealing that he feels compelled to insist that because the infections may be more severe in those with HIV, “they are not really the same disease”). David Didier Johnson, Federal Health Care Discrimination Law ch. 5, at 5–79 (2018).

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companies a safe harbor from the ADA’s prohibition against discrimination on the basis of disability if the insurer is engaged in “underwriting risks, classifying risks, or administering such risks that are based on or not inconsistent with State law.”29 The safe harbor offers a powerful clue as to how the ADA was understood by Congress. Why would Congress have included a safe harbor for insurance “underwriting” or “administering” of risks, activities for which managing benefit “content” is a key lever if it had never intended the “content” of insurance coverage to be subject to the ADA’s prohibitions against discrimination? Moreover, how could Congress have exempted from the ADA those insurance activities that fall short of the very qualifications it established for the safe harbor? Department of Justice (DOJ) regulations confirm this more natural reading insofar as they warn that the safe harbor “shall not be used as a subterfuge to evade the purposes of the Act.”30 This pronouncement suggests DOJ understood the ADA to require insurance companies to show that the safe harbor criteria of genuine risk management (underwriting) was met. The preamble to the DOJ rule also reveals its understanding that this exemption cannot apply without regard for whether the insurance company’s practices are actuarially justified.31 Again, what astonishes – and makes Doe v. Mutual of Omaha a near-perfect showcase for the free market ideology at work in Posner’s thinking, rather than the work of markets themselves – is that Mutual of Omaha’s AIDS caps could not qualify under the ADA’s safe harbor. Such discrimination was not even an economically rational form of underwriting from the insurer’s perspective, as Mutual of Omaha conceded in court filings by stipulating that it “has not shown and cannot show that its AIDS caps are or ever have been consistent with sound actuarial principles.”32

feminist judgment Professor Valarie Blake, writing as Judge Blake, reimagines the majority opinion from a feminist perspective. Blake reaches a different holding – that the AIDS caps are unjustifiably discriminatory and therefore unlawful under the ADA. Blake’s rewritten opinion excavates the stakes – the “why HIV/AIDS?” question – that Posner’s original opinion submerged. If neither 29 30 31

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42 U.S.C. § 12201(c). 28 C.F.R. § 36.212(b). 28 C.F.R. 36.212; see also EEOC, Guidance on Application of ADA to EmployerSponsored Health Insurance (June 8, 1993), [https://perma.cc/ZJC9-KSED]. Doe, 179 F.3d at 558 (1999).

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medical nor economic justifications are adequate, the differential cap on benefits is by definition unjustified discrimination. Posner had an uphill time of it, but, in her rewritten feminist judgment, Blake enjoys the smoother logical arc afforded by recognizing the AIDS caps as discriminatory from the outset. Blake dispenses with the medical justifications for the distinction in coverage that Posner embraced. As Blake points out, treatment for AIDS-related conditions, such as hospitalization for pneumonia, is medically required for patients with HIV/AIDS and no less so than it would be for HIV-negative patients in similar straits. Thus, she observes, “[T]he AIDS caps treat people with a disability differentially on that basis alone.” Would AIDS patients and their hospitalizations cost more for Mutual of Omaha to cover? Blake cuts to the irrationality at the heart of the economic justifications that failed Posner. She cites asthma, chronic obstructive pulmonary disease (COPD), colorectal cancer, and other conditions with higher annual treatment costs. Yet people with these other conditions did not face differential caps from Mutual of Omaha. Even without these comparators in hand, it would be hard to understand why higher costs would justify lower caps, when the benefit limitations in question are structured as lifetime limits on claims costs; no one’s hospitalizations could cost more than the designated cap. The economic reasons for a differential cap over more evenhanded limits that apply regardless of diagnosis are absurd, and the defendant conceded the lack of such a rationale. What remains is for Blake to dismantle the content versus access edifice that Posner and like-minded judges have built, a last-ditch construction that does the work when economic rationality runs out (through a sleight of hand discussed in the “Implications” section, below). Blake has ample resources at her disposal. The legislative text of the ADA bars discrimination in the “full and equal enjoyment” of goods and services and contains the telling safe harbor, which expressly contemplates “underwriting risks, classifying risks, and administering risks,” that is the shaping of benefits that constitute the “content” of insurance. As Blake explains, insurers administer risk in “a number of ways,” by screening and rejecting applicants, charging higher premiums, but also “reducing benefits to those more likely to need them.” This last method unquestionably operates by manipulating the “content” of the benefits. Blake’s approach is bolstered by other signs of legislative intent, and considerations of agency deference. But even apart from these reasons for why content, and not solely access discrimination, should be matters of ADA concern, Blake’s opinion draws its deepest force from the ADA’s underlying statutory purpose of fostering substantive anti-subordination.

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The commitment to anti-subordination at the heart of Blake’s feminist rewrite is where she diverges from Posner, but hews more faithfully to the ADA. The particular content of this good – health insurance coverage – is glossed over in Posner’s account, analogized to shoes or books. Blake instead reminds us that it is not just that discrimination on the basis of disability in health insurance coverage can lead to inequality in access to health care, but that inequality in health care access can in turn reinforce the very basis of discrimination that led to unequal access in the first place. Each becomes constitutive of the other in a self-reinforcing loop. In Blake’s words, “[w]ithout access to necessary health care, people may find it impossible to function independently.” “Access to such care means the difference between early death or a reasonably long life of quality and productivity.” Lack of health coverage also leads to economic inequality and legitimizes stigma, reducing the HIV/AIDS patient “in our minds from a whole and usual person to a tainted, discounted one.” While Posner willfully blinded himself to the “content” of the good at issue, Blake highlights the importance of health care in constituting social and economic equality. One of feminism’s core functions is revealing and dismantling traditional power structures, especially those around sex and gender. In this rewritten opinion, Blake loosens the traditional power structures that entrench discrimination against people with AIDS, who are disproportionately gay men.

implications Blake’s rewritten opinion adopts a quintessentially feminist commitment to antisubordination, which she recognizes as the central aim of the ADA. Although feminist legal theories are plural, rather than monolithic, a key theme that unites them is their “questioning of the premises according to which the subordination of women takes place” and their use of legal-political theory as “an instrument for analyzing the persistent processes in the construction of relationships of inequality, and for the critical assessment of relationships of power.”33 Blake stands firmly in this tradition as she questions the premises by which Mutual of Omaha fashioned its insurance contracts to subordinate people with HIV/AIDS, disproportionately gay men. She reveals the relationship between the plaintiffs and their insurance company to be constituted by power structures, even as it reinforces those structures. And she ensures that the ADA is recognized as an instrument for destabilizing the status quo. 33

María José Añón, Transformations in Anti-discrimination Law: Progress against Subordination, 40 Revus 27, 27 (2020).

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Blake surfaces the question “Why HIV/AIDS?” which Posner had so strenuously suppressed, thereby spotlighting the anti-AIDS and anti-gay stigma that powers this case. Every feminist judgment and commentary begins with selecting a historical case that is ripe for a feminist rewrite. Posner’s opinion, because of its clear bone structure, reveals how dominance and privilege operate even as they shield their own mechanics from view. Because of the virtual absence of any confounding rationales for Mutual of Omaha’s exclusion of coverage for AIDS-related care, the aggressive doctrinal construction of “content” as distinct from “access” by Posner and like-minded judges performed a crucial function. Ultimately, it was Posner’s third strategy – his ideological commitment to a hands-off approach that protects the autonomy of market actors above all else – that he relied on to legitimate the animus behind the AIDS caps when medical and economic rationales could not. Blake’s feminist judgment offers a starkly different approach. She foregrounds the stigma that is behind the AIDS caps and then assesses it against the ADA’s anti-subordination principle. Exposing the conflict between Mutual of Omaha’s policies and the ADA’s commands could have dramatically changed the course of subsequent legal developments. Posner’s opinion in Doe v. Mutual of Omaha played an important role in neutering the ADA as a force for expanding health care access. Posner, as a highly influential scholar and judge, forestalled legal developments that could have brought about meaningful improvements in health insurance coverage for people with HIV/AIDS and other disabilities. Blake’s feminist interpretation of what the ADA requires of health insurance companies might have achieved at least some of what was eventually brought about by new legislation in the form of the ACA – more than a decade sooner. Blake’s open embrace of anti-subordination and rejection of the ideological commitments that animated Posner’s original opinion could have shaped the trajectory of health law more broadly as well. Blake’s feminist rewrite definitively rejects three notions that jurists like Posner have deployed to maintain the status quo and reinforce subordination even in the face of legislation to the contrary. First, Blake rejects the notion that insurance is a mere contract entered into by economic actors whose autonomy should be protected from government oversight. Second, following Ronald Dworkin and other rights theorists, she rejects the sanctity of preferences, instead identifying where preference-satisfaction must cede to side-constraints. Finally, Blake’s rejection of libertarian and utilitarian rationales for a hands-off approach to insurance allows her to dispense with the artificial distinction between access to health insurance and the content of a health insurance policy, which the insurance industry and its allies used to stave off regulation for so many decades prior to

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the specific prohibitions contained in the ACA. These notions continue to scaffold structures of subordination today. Had Blake’s opinion substituted for Posner’s in Doe v. Mutual of Omaha, the ADA might have proven a radical tool for dismantling those structures.

Rejecting Autonomy-Based Theories of Insurance as Contract Blake rejects the core assumption of Posner’s opinion that insurance should be understood primarily as a contract. Conceptions of insurance are contested, as Kenneth Abraham has demonstrated. There are at least four available lenses – Contract, Public Utility, Product, and Private Government/ Mutuality – through which we can view insurance.34 Public Utility and Mutuality models imply a significant degree of attendant regulation, just as the Product model implies strict liability and warranty regimes. These three models, to varying degrees, envision explicit legislative and regulatory governance under antidiscrimination regimes like the ADA that necessarily interfere with contractual relations. Blake’s opinion adopts something like the public utility model by assuming that insurance should be highly regulated as Congress intended when it passed the ADA. By contrast, the contract model (central to the original opinion) entails a relatively laissez-faire regime. Abraham notes “that debates about the proper scope of insurance . . . often presuppose particular views about the purpose or purposes of insurance, and sometimes even presuppose a particular view of what the essence of insurance is.”35 He connects these contested frames for private law disputes, like the one at the center of Doe v. Mutual of Omaha, with the longstanding “debates over national health reform,” which has unquestionably “reflected different views about what insurance should and should not do, and about what insurance actually is.”36 In light of this connection, perhaps Blake’s opinion could have fostered greater comfort with a conception of insurance that would have eased public acceptance of the ACA, even as it fast-forwarded some of the ACA’s nondiscrimination reforms via an interpretation of the ADA. Instead, Posner cast insurance as in essence a contract. He availed himself of an autonomy or will-based conception of contract to cast the disabilitybased insurance terms challenged by the plaintiffs as revealing the free will of the parties regardless of how substantively unjustifiable or undesirable those 34 35

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See Kenneth Abraham, Four Conceptions of Insurance, 161 U. Pa. L. Rev. 653 (2013). Kenneth Abraham, Four Conceptions Of Insurance, TortsProf Blog (Feb. 8, 2010), [https://perma.cc/FN4J-C9DQ]. Id.

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terms might be to a party with less bargaining power, much less the public at large.37 Thus, Posner screened off the contract term, or the “content” of the insurance product, from scrutiny. He argued for maximal autonomy for sellers to define what they bring to market, subject only to their own preferences and inclinations. In other words, “a public accommodation need not ‘alter the nature or mix of goods that [it] has typically provided’” merely because Congress has prohibited it from engaging in disability discrimination. By contrast, Blake’s feminist rejection of the autonomy frame and implicit adoption of the public utility model of insurance renders the terms of the contract an appropriate object for the anti-subordination aim of the ADA.

Rejecting Unqualified Preference-Satisfaction In addition to destabilizing the assumption of insurance as contract, Blake’s opinion also rejects the primacy that Posner, both in Doe v. Mutual of Omaha and his scholarship more generally, grants to the autonomous preferences of economic actors. Some have argued that the liberty-tilted conception of contracts central to Posner’s opinion is actually in the service of a different master value, that of utility or market efficiency.38 Certainly utilitarianism and libertarianism share an abstention with respect to individual preferences. Indeed, sometimes it is hard to discern which theory is being mobilized in the ideology of “free markets.” Dworkin has famously criticized this purported neutrality of utilitarian preference-satisfaction in Rights as Trumps, concluding “that if utilitarianism is to figure as part of an attractive working political theory, then it must be qualified so as to restrict the preferences that count.”39 And animus, such as that of Nazis against Jews in Dworkin’s example40 or the animus against gay men that Blake lays bare in Doe v. Mutual of Omaha, is precisely the kind of preference that must be excluded by means of the sideconstraints that we call rights and that the ADA was passed to establish, as Blake in her framework can recognize while Posner must deny.41

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See, e.g., Brian Bix, Theories of Contract Law and Enforcing Promissory Morality: Comments on Charles Fried, 44 Suffolk U. L. Rev. 719, 723 (2012) (citations omitted). Nathan B. Oman, The Dignity of Commerce: Markets and the Moral Foundations of Contract Law (2016). Ronald Dworkin, Rights as Trumps, in Theories of Rights 153, 165 (Jeremy Waldron, ed. 1984). Id. at 156. Robert Nozick, Anarchy, State, and Utopia (1974) (elaborating the idea of rights as sideconstraints, showing that even libertarians cannot in good faith completely avoid judgment on the permissibility of certain preferences).

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The peculiarity of the factual setup of Doe v. Mutual of Omaha is the lack of a typical economic justification on the insurer’s part. This feature allows the original opinion and the counterpunch of Blake’s feminist rewrite to showcase just how the liberty/autonomy maneuver works. Posner’s brand of “free” market fundamentalism as expressed in Doe doesn’t depend upon marginal cost-utility rationality, which as we have seen, cannot justify the AIDS caps at issue in the case. Posner argues for maximal autonomy for sellers to define what they bring to market, subject only to their own preferences and inclinations. In other words, “a public accommodation need not ‘alter the nature or mix of goods that [it] has typically provided.’”42

Rejecting the Content versus Access Distinction Most importantly, Blake’s exposure and rejection of the supposedly neutral notions of autonomy and market efficiency in her feminist rewrite frees her from the content versus access distinction that has played such a key role in staving off collective efforts to achieve more equitable access to health care on a mutual aid basis. Posner’s distinction between the “content” of the insurance contract, which he safeguarded from scrutiny, and “access” to insurance, has enduring implications. This same distinction is what opens a space of deniability to those who wish to excise pregnancy and childbirth benefits from health insurance coverage.43 As recently as 2017, Republican Congressman John Shimkus advocated for this, questioning why men should have to pay for insurance covering prenatal care.44 Can neutrality toward market preferences lend the patina of formal equality and nondiscrimination to those exclusions without regard to the content or substance of the insurance contract terms? Posner’s position is that people with AIDS and those without were treated equally by Mutual of Omaha, insofar as both were free to buy a policy that imposes special restrictions on people with AIDS. Similarly, men and women are equally offered health insurance without pregnancy-related benefits. The ease with which Blake’s feminist reasoning flows, relative to the contortions of Posner’s original opinion, reinforces how the animus behind this type of health insurance term, lacking medical or economic justification, is difficult to square with the ADA and its principles. Invidious discrimination 42 43

44

See Abraham, supra note 36 at 670, 674. 42 U.S.C. § 2000e(k) (legislating against this possibility through the Pregnancy Discrimination Act, one of the few federal benefit mandates prior to the ACA). Mollie Reilly, GOP Congressman Asks Why Men Should Have to Pay for Prenatal Care, Huffpost (Mar. 9, 2017, 9:38 PM), [https://perma.cc/A4RZ-JK2D].

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is never easy to defend frontally. Posner deployed an arsenal of liberty-related tools immunizing hate-based preferences against inquiry. The givenness of a market actor’s preferences serves just as the states’ rights playbook has in deflecting antidiscrimination measures in the realm of health reform and far beyond it. Indeed, Posner’s opinion closes thus, deferentially leaving insurance regulation to state law under the McCarran-Ferguson Act and thus cutting short the emancipatory potential of federal civil rights laws, which Blake’s rewrite, in turn, sets free.

DOE V. MUTUAL OF OMAHA INS., 179 F.3D 557 (7TH CIR. 1999)

judge valarie blake, circuit judge, delivered the opinion of the court Is a health insurer’s refusal to provide benefits to people with disabilities on the same terms as others a form of disability discrimination under Title III of the Americans with Disabilities Act (ADA), 42 U.S.C. §§ 12181–12189? Today, we answer in the affirmative. In doing so, we recognize the ADA’s mission to redress the historic subordination of people with disabilities, the importance of equal access to health care to that end, and how insurance practices that are rooted in stereotypes rather than objective criteria are antithetical to the ADA’s anti-subordination aim.

i The plaintiffs are John Doe and Richard Smith, two Chicago residents who tested positive for the Human Immunodeficiency Virus (HIV). The defendant, Mutual of Omaha Insurance Company (Mutual), sold Doe and Smith health insurance plans that significantly restrict their ability to receive medical care for their HIV. The policies the defendant issued to the plaintiffs place lifetime limits on benefits to treat both Acquired Immune Deficiency Syndrome (AIDS) and AIDS-related conditions (ARC), which include treatment of HIV. Doe’s policy limits such medical care to $100,000 per lifetime, and Smith’s limits such care to $25,000 per lifetime. Mutual’s policies do not specify precisely which types of treatment are excluded under the AIDS and ARC caps (hereinafter referred to collectively as the AIDS caps), but the plaintiffs and the defendant agree that the AIDS caps apply to: antiretroviral medicines (which help prevent HIV from progressing into AIDS), care to prevent or treat opportunistic infections, and diagnostic testing, for example.

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Mutual does not dispute that Smith and Doe are individuals with disabilities for purposes of the ADA. See Bragdon v. Abbott, 524 U.S. 624, 647 (1998) (holding that HIV is a disability because it is a physical impairment which “substantially limits the major life activity of reproduction”). Mutual also concedes that its plans are less favorable for people with HIV or AIDS than for other insureds: “[o]nce the AIDS Caps are reached, insureds with AIDS or ARC do not receive and cannot depend upon coverage for medical needs and treatments that are afforded to other insureds paying equivalent premiums.” App. 16. First, Mutual places much higher ($1 million) lifetime limits on covered benefits for other medical conditions as compared to the AIDS caps. Second, upon reaching the AIDS caps, the plaintiffs will never again be able to receive any covered benefits for AIDS or HIV related conditions from the insurer. App. 15, 35–36, 51. In contrast, for those with medical conditions subject to the $1 million cap, full benefits are reinstated if the insured refrains from billing Mutual for two years. App. 15, 27, 46. Third, coverage will sometimes vary based solely on whether the person has AIDS, HIV, or another medical condition. Hospitalization for pneumonia, for instance, will be subject to the $1 million cap for a person without HIV, but the same hospitalization for the same condition will be subject to the much lower lifetime cap for Smith and Doe. App. 15–16. Lastly, Mutual concedes that it cannot show that the AIDS caps are consistent with state law or are otherwise justified by “sound actuarial principles, actual or reasonably anticipated experience or bona fide risk classification.” App. 17. The district court held that the plaintiffs had adequately stated a claim for disability discrimination under Title III of the ADA. Mutual appealed. Three issues are before this court: (1) whether Title III of the ADA allows for claims of discrimination related to the content of insurance benefits, as well as access to those benefits; (2) if yes, whether Mutual has engaged in discrimination under Title III with its AIDS caps; and (3) whether the suit is barred by the McCarran-Ferguson Act. We answer the first two questions in the affirmative, and the third in the negative. Consequently, we conclude that the judgment of the district court will be affirmed.

ii A First, we hold that Title III of the ADA clearly governs not only access to a plan, but also the content of insurance benefits. In other words, an insurer has not fulfilled its obligations under the ADA solely by permitting a person with a

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disability to buy into a plan; the insurer must also design benefits in a way that does not discriminate on the basis of disability. Title III Section 302(a) of the ADA provides that “[n]o individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation.” 42 U.S.C. § 12182(a) (1990). “Insurance offices” are expressly considered places of public accommodation. 42 U.S.C. § 12181(7)(F) (1990). Neither party disputes that Title III clearly applies to insurers. However, Mutual contends that Title III only guarantees access to the goods and services offered by insurers and does not apply to the content of those goods and services. Under this logic, selling plans to the plaintiffs, as Mutual has done, is all that the ADA requires of insurers, and insureds have no legal recourse if the plans’ benefits are less favorable for those with disabilities, as the plaintiffs here allege. Mutual argues that the Court cannot possibly interpret the ADA to reach the content of goods and services offered by places of public accommodation; if so interpreted, the result would be too sweeping. They ask us to liken this case to a blind person who complains of a bookstore’s refusal to stock braille books. The store might be expected to permit all people, regardless of disability, to enter the premises. But the store cannot possibly be expected to adjust its inventory to accommodate each individual with a disability’s unique purchasing needs. A number of other jurisdictions support Mutual’s claim. See Ford v. Schering-Plough Corp., 145 F.3d 601, 612–614 (3d Cir. 1998); Lenox v. Healthwise of Ky., Ltd., 149 F.3d 453, 457 (6th Cir. 1998); Parker v. Metro. Life Ins., 121 F.3d 1006, 1012–1014 (6th Cir. 1997). Perhaps the most in-depth analysis comes from Parker, where the court narrowly construed the ADA’s public accommodations language to reach only physical spaces. Parker, 121 F.3d at 1014. The Parker court applied the canon of noscitur a sociis, which dictates that an ambiguous term in a statute is to be interpreted according to the other words surrounding it. Id. In ADA Title III, “insurance offices” is situated among other terms that are physical places, including museums, parks, bakeries, and auditoriums. See id.; 42 U.S.C. § 12181(7). Thus, according to the court in Parker, the ADA only assures physical access to the place a good or service is provided, nothing more. Parker, 121 F.3d at 1022. The reading in Parker, however, cannot square with Congress’ express purpose in passing the ADA “to assure equality of opportunity, full participation, independent living, and economic self-sufficiency” for people with

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disabilities. 42 U.S.C. § 12101(a)(8) (1990) (emphasis added). Congress observes that “individuals with disabilities . . . have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society.” 42 U.S.C. § 12101(a)(7) (1990). The ADA places blame on both individual discrimination (“society has tended to isolate and segregate individuals with disabilities”) and structural discrimination (“architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, [and] exclusionary qualification standards and criteria”). 42 U.S.C. § 12101(a)(2), (5) (1990). The House Report related to the passage of the ADA observed that individuals with disabilities “have often not had the political power and muscle to demand the protections that are rightfully theirs. The simple fact that this Act has taken this long to pass Congress – twenty-five years after other civil rights legislation has been passed – is a testament to that fact.” H.R. Rep. No. 101-485(II), at 40 (1990). Congress has also acknowledged “health services” as one of the “critical areas” where disability discrimination persists. 42 U.S.C § 12101(a)(3) (1990). In essence, the ADA is in the business of anti-subordination, as it seeks to improve the overall economic, political, and social standing of a group that has been historically locked out of opportunities in employment, education, health care, and other areas critical to human flourishing. We should respect these important congressional aims when we interpret the ADA. It is impossible to reconcile these lofty congressional goals with Mutual’s or the Parker court’s reading of the law. Mere access may, depending on the facts and circumstances, enable a person with a disability to be independent, economically self-sufficient, and able to fully participate in society. But often, mere access will not be enough. For our plaintiffs, access alone subjects them to the burdens of paying for insurance without receiving the same benefits as others. Access is an important right for people with disabilities, but it is a hollow victory if public accommodations are free, then, to achieve the very same ends through content discrimination, especially when the public accommodation, at best, disregards the needs of people with disabilities or, at worst, purposefully targets them. Granting them access, without likewise scrutinizing content, places them at an economic disadvantage. As their health is harmed, their ability to participate meaningfully in society is reduced, counter to the ADA’s anti-subordination aims. If Congress’ aims in passing the ADA were anti-subordination, then we must hold that Title III of the ADA applies to the content of insurance benefits, as well as to access.

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B Mutual’s position is unsupported by the plain language of the statutory text. Nowhere in Title III does the text of the statute make an explicit divide between access to and content of goods and services. Rather, Title III calls for a much more expansive “full and equal enjoyment” of the goods and services offered by public accommodations. 42 U.S.C. § 12182(a) (1990). Title III additionally provides examples of when the “full and equal enjoyment” standard may not be met, such as denying the opportunity to “participate in or benefit from” goods or services provided to others or providing the individual with disabilities goods and services that are “not equal to” or are “different or separate” from those provided to others. 42 U.S.C. § 12182(b)(1)(A)(ii), (iii) (1990). The plain meaning of such language suggests far more than mere access to a good. Imagine that, as a small child, your father promises you that after dinner, you and your sibling can share “full and equal enjoyment” of a gooey chocolate cake that sits high up the counter where neither of you can reach it. After such a promise, when dinner finally ends, you would rightly expect your father to let you eat some of the cake (at least the same sized slice as your sibling), not to just remove the cake from the counter to a location where you are better able to view, smell, and touch it but not eat it. “Enjoyment” requires far more than mere physical proximity to a thing, at least in some cases. If all that is promised is physical proximity or access, then language about enjoyment of goods and services referenced throughout the statute would be rendered meaningless and superfluous. Chabner v. United of Omaha Life Ins., 994 F. Supp. 1185, 1190 (N.D. Cal. 1998). The ADA’s language regarding when a good or service is unequal or different would also be rendered meaningless, as this language goes to the nature and quality of the good, not mere access to it. See Doukas v. Metro. Life Ins., 950 F. Supp. 422, 424–427 (D.N.H. 1996). C Beyond the more general language in Title III, the ADA specifically contemplates insurance discrimination – in the ADA’s insurance safe harbor – and does not distinguish between access and content discrimination there either. The insurance safe harbor is a defense used by insurers to justify insurance classifications. The ADA explicitly states that it “shall not be construed to prohibit or restrict . . . an insurer . . . from underwriting risks, classifying risks, or administering such risks that are based on or not inconsistent with State

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law” so long as the insurer does not use this “as a subterfuge to evade the purposes of” the ADA. 42 U.S.C. § 12201(c)(1) (1990). Insurers engage in underwriting and classifying risks to predict and minimize the number of claims they encounter. This, in turn, allows them to best guard the insurance funds in order to offer more competitive prices, guarantee payouts for those who need it, and maintain profit margins. Ultimately, insurers want more people to pay into insurance than people who receive pay outs. Therefore, as much as possible, insurers want to avoid those who are more likely to make claims against the insurer. Conventional wisdom is that insurers avoid risky enrollees in a number of ways: denying an individual from enrolling in a plan, adjusting premiums according to risk, or reducing benefits to those more likely to need them. While some of these practices affect whether an individual can access the plan (i.e., purchase it), others affect the content of the benefits itself (what benefits are covered compared to others’ plans). Section III.C of this opinion will discuss the insurance safe harbor in greater detail, but for the purposes of the question of access versus content discrimination, the safe harbor does not define “underwriting risks, classifying risks, or administering such risks.” 42 U.S.C. § 12201(c)(2) (1990). Thus, it does not distinguish between those acts by insurers that would affect access versus those acts that would affect content discrimination. Discrimination based on benefits is a common insurance practice – just as common as access discrimination. Absent some explicit statement in the text, it would be odd to read the insurance safe harbor as only addressing one form of insurance classification and not the other when both are equally prevalent in the insurance market. The legislative history surrounding the ADA insurance safe harbor also supports the interpretation that content discrimination is governed. As was stated in one House Report, the insurance safe harbor applies when insurers “refuse to insure, or refuse to continue to insure, or limit the amount, extent, or kind of coverage available to an individual, or charge a different rate for the same coverage solely because of a physical or mental impairment.” H.R. Rep. No. 101-485(II), at 137 (1990) (emphasis added). Refusing to insure or charging a different amount to insure are clearly access discrimination, but altering “the amount, extent, or kind of coverage” is broader and could encompass content distinctions such as whether or not to cap benefits at a certain level for certain groups. The Senate also contemplated the insurance safe harbor broadly. “Under the ADA, a person with a disability cannot be denied insurance or be subject to different terms or conditions of insurance based on disability alone, if the

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disability does not pose increased risks.” S. Rep. No. 101-116, at 77 (1989) (emphasis added). This broad language suggests a variety of forms of discrimination by insurers, both access- and content-based. In short, Congress expressly considered the issue of insurance discrimination in the ADA. This was the opportunity for that esteemed legislative body to clarify whether access – and/or content – based distinctions were contemplated. It did not make a distinction between access and content-based distinctions, so neither should we. D Lastly, Department of Justice (DOJ) regulations and guidelines support the argument that the ADA reaches claims of content discrimination by insurers. The DOJ is the agency tasked with implementing the ADA, and as such, its regulations are entitled to some deference. Chevron U.S.A., Inc. v. Nat. Res. Def. Council, Inc., 467 U.S. 837 (1984). In Bragdon v. Abbott, the Supreme Court expressly gave deference to DOJ’s Title III regulatory guidance in interpreting the ADA. 524 U.S. 624, 646 (1998). In its preamble to its ADA regulation, the DOJ analyzed 28 C.F.R. § 36.212 and specifically rejected arguments that insurance benefits are not governed by the ADA, stating that “[o]nly a few commenters argued that the Act does not apply to insurance underwriting practices or the terms of insurance contracts . . . . Congress intended to reach insurance practices by prohibiting differential treatment of individuals with disabilities in insurance . . . unless the differences are justified.” Preamble, 28 C.F.R. § 36.212 (1991). Again, there is no distinction made between access- and content- based discrimination. However, the DOJ’s preamble to 28 C.F.R. § 36.307, which states that a public accommodation need not “alter the nature or mix of goods that [it] has typically provided,” may seem to contradict this. Preamble, 28 C.F.R. § 36.307 (1991). At most, though, what this language suggests is that the insurer need not create brand-new terms for an individual with disabilities. This, however, is not what the plaintiffs demand. Instead, all they ask is that they be treated similarly to other insureds and not subjected to a unique and much lower cap on benefits than that imposed on others. The DOJ’s Title III Technical Assistance Manual clearly regulates the content of benefits. It prohibits insurers from discriminating “on the basis of disability in the sale of insurance contracts or in the terms or conditions of the insurance contracts they offer.” DOJ Technical Assistance Manual III-3.11000 (1993). Borrowing the language from the aforementioned House Report, it clarifies that insurers “may not . . . limit the amount, extent, or kind of

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coverage available to an individual . . . except where the. . . limitation . . . is based on sound actuarial principles or is related to actual or reasonably anticipated experience.” Id. To allow content-based discrimination to go unchallenged defies the plain text of the ADA and its regulations as well as the broader goals of the ADA to tackle the long-standing subordination of people with disabilities.

iii A Having held that the plaintiffs are free to challenge the content of insurance benefits, we now must decide whether Mutual’s particular benefit design is discriminatory under Title III of the ADA. We answer in the affirmative because the AIDS caps clearly differentiate on the basis of a disability. This is a sufficient basis to rule in favor of the plaintiffs, but we will also consider how the AIDS caps run counter to the anti-subordination purpose of the ADA and why Mutual’s failure to raise a safe harbor defense could suggest insurance practices are rooted in stigma and stereotyping rather than objective criteria. The ADA forbids differential treatment by public accommodations on the basis of disability (unless a defense is established). Here, Mutual has singled out a disabling condition, AIDS, and treats insureds with that condition differently on that basis alone. The AIDS caps are thus prohibited by the ADA. One might argue that the AIDS caps do not discriminate on the basis of disability because they do not treat similarly situated people differently; people with disabilities collectively are treated no differently than those without. For example, a person with AIDS who breaks a leg can use their benefits under the plan to obtain crutches and a cast just as easily as someone without AIDS who breaks a leg. Any restrictions go to AIDS-related care only, and since nobody gets access to AIDS-related care, people with AIDS are treated exactly the same as everyone else. However, this is not the only standard for viewing disability discrimination under the ADA. Generally, an act by a covered party is discriminatory if it singles out a particular disability for differential treatment compared to other disabilities. For an example, see Alexander v. Choate, a case in which a state Medicaid program imposed an across-the-board limit on covered hospital stays for all patients, regardless of their disability. 469 U.S. 287, 289 (1995). People with disabilities challenged the new limit under the Rehabilitation Act, arguing that the limit differentially harmed people with disabilities, who would more

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frequently reach the maximum limit than other patients. Id. The Supreme Court upheld the facially neutral state Medicaid policy, in part because it “does not apply to only particular handicapped conditions and takes effect regardless of the particular cause of hospitalizations.” Id. at 302 n.22. Similarly, in Henderson v. Bodine Aluminum, the court held that a plan’s coverage denial of a particular medicine to treat breast cancer was an ADA violation because the plan covered the same medicine for other forms of cancer; thus, the exclusion applied solely to the specific disability of breast cancer. 70 F.3d 958, 960 (8th Cir. 1995). Here, the AIDS caps apply only to people with a specific disability and a specific reason for hospitalization, and similarly situated people with other disabilities are not subject to the same limits. The differential treatment is solely based on a specific disability, AIDS. Consider the hypothetical of two patients (A and B) who have pneumonia. Both suffer complications and are hospitalized for a period of time, resulting in costly medical bills. Patient A’s pneumonia was brought on by a depressed immune system caused by medication she is taking to treat her breast cancer. Patient A’s care is subject to a maximum lifetime cap of $1 million, but if she goes over that limit, she will be able to resume covered benefits if she does not bill the insurer for a period of two years. Patient B’s pneumonia is a by-product of a depressed immune system due to AIDS. Her care will be subject to the more restrictive AIDS cap and once reached, all related care will be denied even if she forgoes billing the insurer for two or even twenty years. The limit is only imposed when the need for care is based on a specific disability, AIDS. The plaintiffs have satisfactorily shown that the AIDS caps treat people with a disability differentially on that basis alone. Mutual concedes that AIDs is a disabling condition and offers no other defense of the AIDS caps. Thus, we must rule in favor of the plaintiffs. However, given the import of this case in discerning the role of disability law in insurance benefits, we must emphasize two other reasons why such behavior by insurers is concerning and should be unlawful. For one, the caps run counter to the ADA’s broader purpose. Additionally, Mutual’s failure to justify its practices in objective standards through the safe harbor provision raises concerns that the AIDS caps are rooted in stereotype and stigma. B As mentioned, the broader purpose of the ADA is anti-subordination of people with disabilities and the fostering of their inclusion in society.

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Access to health care is a central feature in this mission. Without access to necessary health care, people may find it impossible to function independently and may not be physically or mentally well enough to fully engage in civil activities, work, or their social life. Moreover, inadequate health insurance may increase the burden of health care expenses, leading to economic inequality. The AIDS caps are a de facto bar of access to lifesaving medications and treatments and further the subordination of people with HIV and AIDS through their economic and physical well-being. People infected with the HIV virus may take anti-retrovirals, protease inhibitors, or other medications to prevent their conditions from worsening. Fred J. Hellinger, Cost and Financing of Care for Persons With HIV Disease: An Overview, 19 Health Care Fin. Rev. 1, 1 (1998). Between 1994 and 1997, there was a significant decline in morbidity and mortality of people with AIDS due to these new medical interventions. Frank J. Palella et al., Declining Morbidity and Mortality Among Patients with Advanced Human Immunodeficiency Virus Infection, 338 New Eng. J. Med. 853, 853 (1998). Access to such care means the difference between early death or a reasonably long life of quality and productivity. Yet, being on these drugs requires medical management to ensure that the drugs are working, to determine whether a different combination is necessary, and to ensure that patients stay on the drugs; otherwise, patients risk developing drug-resistant strains. Like anyone with a chronic illness, patients with AIDS may also periodically require medical visits, hospitalization, emergency room care, tests, or other treatment. One study predicted that in 1995, the average cost to treat HIV per month was $2,103 for a patient with a relatively low viral load. Fred J. Hellinger, Cost and Financing of Care for Persons with HIV Disease: An Overview, 19 Health Care Fin. Rev. 1, 4 (1998). About $797 of that cost per month was for medication. Id. The AIDS caps can result in a de facto bar of access to these lifesaving medications and treatments. An insured spending this average amount on AIDS-related care would reach the $25,000 lifetime limit on benefits within the first year of treatment, or very shortly after. Thereafter, the insured would no longer have access to any medical care for AIDSrelated lifesaving medications, hospitalizations, or other care necessary to safeguard their health and independence. Even patients with higher lifetime limits, such as the $100,000 limit, are likely to reach the limit quickly and then face complete barriers to further care. The caps function to make health care less available precisely as patients grow sicker and as more of their medical needs are dominated by their AIDS diagnosis. They also

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function as an almost guarantee that patients’ conditions will more rapidly worsen from HIV to AIDS. The plaintiffs in this case have already made concessions regarding their health and well-being because of the caps. In Smith’s declaration, he describes how he has avoided making any claims to Mutual because he is hoping to save the coverage until he can no longer afford out-of-pocket expenses or can no longer take care of himself. He enrolled in clinical trials to receive free antiretrovirals. The trials came with risk; he received experimental doses and drugs that sometimes did not control his condition as well as the ordinary course of clinical care would have. The study was canceled, and Smith is now forced to bill Mutual for the medications or risk creating a drug-resistant strain of HIV that would make it harder or impossible for his condition to be treated in the future. Doe has also opted for experimental treatment, limited the number of times he has visited his doctor, and received fewer viral load tests than optimal, all with an aim of avoiding exceeding his cap. Doe has asked Mutual to tell him precisely what services would or would not be considered as counting against the lifetime cap, so that he can plan accordingly, but he was told that Mutual will only give him this information after he submits claims. The AIDS caps can have other impacts on the independence of people with disabilities and their ability to contribute to and participate meaningfully in society. Because of discrimination in private insurance markets, to receive adequate medical care, people with AIDS may be forced to forego paying for private insurance in favor of pursuing public health benefits. National Council on Disability, On the Threshold of Independence (1988). These benefits are available either if one’s income qualifies them for Medicaid or if one has a severe enough disability to qualify them for Medicaid or Medicare (also dependent on their work history and financial need). For the former, this may mean that people with disabilities who would otherwise want to work have to willingly leave the workforce in order to income-qualify for Medicaid. Additionally, this means that taxpayers are burdened with paying for benefits for someone who would have otherwise afforded private insurance. For the latter, people with AIDS may not always be considered sick enough to qualify for public benefits. They may wind up uninsured or remaining on insufficient private plans at great cost to both their health and finances. By the time they are sick enough to qualify for public care, it may be too late for anti-retrovirals to stabilize their condition and give them an opportunity to live longer and more productive lives. In a more theoretical sense, deciding who and what to cover or not cover via insurance is a political exercise that reflects what society thinks about the

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worth of people with specific conditions. “Insurance is a social endeavor . . . and insurability is a collective decision about membership, not a natural trait of individuals. A person is insurable if a group (fraternal organization, mutual benefit society, insurance company, government program) decides it will extend mutual aid to him or her . . . . Insurance underwriting, far from being a dry statistical exercise, is a political exercise in drawing the boundaries of community membership.” Deborah A. Stone, The Struggle for the Soul of Health Insurance, 18 J. Health Pol., Pol’y & Law 287, 298–299 (1993). When insurers cover something, they create “communities of privilege;” when they exclude, ban, or limit, they deprivilege. Id. at 299. Who is “in” and who is “out” when it comes to insurance policy may have more to do with that person’s social standing than the actual cost of insuring them. Social scientists have long recognized a tendency of society to create second-class citizens that are “reduced in our minds from a whole and usual person to a tainted, discounted one.” Erving Goffman, Stigma: Notes on the Management of Spoiled Identity 3 (Simon & Schuster eds., 1st ed. 1986). This is known as stigma, and it often leads to collective societal beliefs that differential treatment of some is fair and justified because those people are fundamentally different than others. Certainly, insurance discrimination on the basis of AIDS status is neither natural nor inevitable. It is an intentional policy choice to favor others over this group. Yes, health insurers operate as for-profit entities, and must safeguard funds in order to meet the claims of their insureds. But we should be suspicious of any limitation that appears to target a single group alone. Insurers can save money in other ways: through limitations that fall more equitably across the insurance pool or through means other than risk classification such as negotiating better reimbursement rates with providers, cutting administrative costs, and competing for more insureds through price or quality. When we accept caps on AIDS, we accept differential treatment for that group alone, and, in turn, economic and social subordination of that group. Ultimately, allowing caps on AIDS runs afoul of the ADA’s antisubordination goals. C The insurance safe harbor, 42 U.S.C. § 12201 (1990), may seem to contradict the notion that a purpose of the ADA is to tackle anti-subordination in health care. After all, the safe harbor essentially exempts insurance companies from discrimination claims if they can prove that their action was actuarially justified. Yet, the safe harbor is not limitless; insurers must support this defense

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after they invoke it; the defense may fail if its real purpose is to act as subterfuge to avoid the broader purposes of the ADA. Ultimately, antisubordination is an undeniable aim of the ADA, and access to health care is a necessary part of that effort. The safe harbor should be construed narrowly with these goals in mind. In this case, Mutual has elected not to invoke the safe harbor to defend its AIDS caps because it concedes that it lacks actuarial support for these practices. Had Mutual raised this defense, the Court would likely have ruled in its favor, even though Title III applies to the content of insurance benefits and there was clear differential treatment, because the safe harbor is clear that such discrimination is permissible if actuarially based and not used as subterfuge for avoiding the ADA. The absence of such a defense does not guarantee an automatic win for the plaintiffs. They must still show that the access- or content- based distinction is discriminatory and that it is based on a disability. But the absence of any effort by Mutual to raise such a defense is concerning. By conceding that it does not have actuarial data to support its AIDS caps, Mutual admits that it does not have any objective evidence that the cost to cover treatment of AIDS is any higher than for people with other covered conditions that are not subject to similar caps. If it does not have such evidence, then what has led Mutual to create such caps in the first place? While the safe harbor allows for discrimination, it also requires that this discrimination be justified objectively. As the DOJ observes in the preamble to its regulations, “Congress intended to reach insurance practices by prohibiting differential treatment of individuals with disabilities in insurance . . . unless the differences are justified.” Preamble, 28 C.F.R. § 36.212 at 603 (1998) (emphasis added). The DOJ states further: Because the legislative history of the ADA clarifies that different treatment of individuals with disabilities in insurance may be justified by sound actuarial data, such actuarial data will be critical to any potential litigation on this issue. This information would presumably be obtainable in a court proceeding where the insurer’s actuarial data was the basis for different treatment of persons with disabilities. Preamble, 28 C.F.R. § 36.212 at 604 (1998). This emphasis on objectivity is no accident. As part of its anti-subordination mission, the ADA seeks to eliminate harmful stereotyping. “[I]ndividuals with disabilities . . . have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly

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indicative of the individual ability of such individuals to participate in, and contribute to, society.” 42 U.S.C. § 12101(a)(7) (1990) (emphasis added). Why is stereotyping harmful? According to Erving Goffman, stereotyping feeds our notion that some groups are inherently different than us; we then accept differential treatment as natural and even preferable, and the “different” group is subordinated over time. In the case of people with disabilities, such an effect is amplified by the fact that prejudice and stigma against people with disabilities has led some to be kept out of the public eye and confined to their homes or institutions. Other disabilities are stigmatized to a degree that, where possible, the person with the disability will hide it from the outside world. Notably, one of our plaintiffs is going by “John Doe” for that very reason. Consequently, the public is largely insulated from interacting with people with disabilities, and stereotypes may be all that they have to form their thoughts about what a person with a disability is like. In light of these concerns, the safe harbor provision plays a critical function of ensuring that the insurance practices which are allowed to continue are rooted in objective standards instead of subjective stereotypes or bias. Mutual’s failure to bring a safe harbor defense is unsurprising because the evidence suggests that there is little objective support for their AIDS caps. While AIDS and HIV are costly conditions to treat, they are no costlier than a variety of conditions that Mutual does not subject to such caps. One study suggests that HIV accounts for only about one percent of all hospital days and medical expenditures in the United States. Samuel A. Bozzette et al., The Care of HIV-Infected Adults in the United States, 339 New Eng. J. Med. 1897, 1897 (1998). According to the study’s authors, “[t]his proportion is not excessive, considering that HIV infection, at its peak, accounted for about 7 percent of the total potential years of life lost in the United States, or more than pneumonia, influenza, chronic obstructive pulmonary disease, diabetes mellitus, and chronic liver disease combined.” Id. at 1902–1903. Indeed, HIV and AIDS annual costs are comparable to the costs to treat other conditions not subject to Mutual’s annual limit. AIDS costs around $3.3 billion to treat annually. Fred J. Hellinger, Updated Forecasts of the Costs of Medical Care for Persons with AIDS, 1989-93, 105 Pub. Health Rep. 1, 1 (1990). Asthma, chronic obstructive pulmonary disease (COPD), colorectal cancer, leukemia, and lung cancer all cost more to treat annually, yet are not subject to the same limits imposed by Mutual. National Institute of Health, Department of Health & Human Services, Disease-Specific Estimates of Direct and Indirect Costs of Illness and NIH Support (1997). What justifies this difference between the treatment of people with AIDS and those with other costly medical conditions? At best, it may be stereotypical assumptions about the cost of treating

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AIDS; at worst, there is evidence that discrimination against people with AIDS, a historically vulnerable group, is seen as somehow more acceptable or justifiable than against others. The absence of objective proof is even more concerning here, where differential treatment falls on an especially vulnerable, stigmatized, and stereotyped group that has long suffered diminished social standing and loss of political capital for reasons apart from disability. In Carparts Distribution Center., Inc. v. Automotive Wholesaler’s Ass’n, an insurer imposed an AIDS cap on a group health insurance plan. 987 F. Supp. 77, 78 (D.N.H. 1997). The plaintiffs argued that the insurer acted out of anti-gay bias, citing an affidavit of an insurance administrator who had worked with the plaintiffs’ boss to select the specific plan for the company. Id. at 82. According to the insurance administrator, the plaintiffs’ boss had selected a plan with AIDS caps because the boss was “morally opposed to homosexuals and believed that AIDS was primarily a homosexual disease” and “was vehemently opposed to [the company] paying any benefits for members with AIDS because he considered homosexuals to be ‘perverts and criminals.’” Id. The plaintiffs here do not make such an allegation of bias or stereotyping, though again, Doe’s decision to go unnamed in this litigation is a reminder of the broader social stigma people with AIDS still face. Some legal scholars have argued that AIDS caps may be driven by animus or stigma against people with HIV/AIDS or against gay people. Insurance policies reflect our society’s willingness to pool one another’s risks. Our willingness to insure some conditions, such as cancer, but not others, such as AIDS, may reflect the broader stigma that people with AIDS face in everyday society. Samuel A. Marcosson, Who Is “Us” and Who Is “Them” – Common Threads and the Discriminatory Cut-Off of Health Care Benefits for AIDS under ERISA and the Americans with Disabilities Act, 44 Am. U. L. Rev. 361, 394 (1994). The collective society sees people with AIDS as “different” and as morally to blame for their condition, and are thus more likely to tolerate limitations on benefits for people with AIDS than for others. Id. Moreover, AIDS caps may reflect not only bias against people with AIDS but against gay people too. “AIDS and homosexuality are inextricably connected in the minds of most heterosexual Americans. Many . . . have a significant fear and disdain of homosexuality . . . . Some heterosexual Americans want to exclude homosexuals from ‘their’ health insurance pools and view generally the allocation of limited health care resources in terms of ‘in-group/out-group’ politics.” James R. Bruner, Note, AIDS and ERISA Preemption: The Double Threat, 41 Duke L.J. 1115, 1127 (1992).

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While the legal claim here only alleges disability discrimination, that discrimination takes place in a broader social context. Congress acknowledges that people with disabilities deserve legal protections because of their history of subordination, lack of political power, and harmful stereotyping. The plaintiffs here have disabilities and also face other forms of social disadvantage that may only compound this subordination, stereotyping, and lack of political capital. Caps on benefits are no more lawful if placed on patients with asthma rather than on patients with AIDS if they lack actuarial proof. But the fact that it may be no accident that the caps here are placed on patients with AIDS and not asthma is even more suggestive of the importance of holding insurers to objective standards.

iv Lastly, Mutual argues that the McCarran-Ferguson Act bars Title III of the ADA from applying to insurance. We disagree. Section 2(b) of the McCarranFerguson Act provides that “[no] Act of Congress shall be construed to invalidate, impair, or supersede any law enacted by any State for the purpose of regulating the business of insurance, or which imposes a fee or tax upon such business, unless such Act specifically relates to the business of insurance.” 15 U.S.C. § 1012(b) (1945). The McCarran-Ferguson Act has a general goal of conserving insurance regulation for the states. Yet, the McCarran-Ferguson Act permits federal laws governing insurance so long as the law specifically relates to the business of insurance. Title III of the ADA clearly does so. In favor of the defendant, the House Report related to the passage of the ADA states that it “will not disrupt the current nature of insurance underwriting or the current regulatory structure for self-insured employers or of the insurance industry in sales, underwriting, pricing, administrative and other services, claims, and similar insurance related activities based on classification of risks as regulated by the States.” H.R. Rep. No. 101-485(II), at 136 (1990). Some courts have read this to mean that the ADA does not regulate the business of insurance and so state law must apply. See, for example, Leonard F. v. Isr. Disc. Bank of N.Y., 967 F. Supp. 802 (1997). However, the ADA expressly governs “insurance offices.” 42 U.S.C. § 12181 (7)(F) (1990). Moreover, the insurance safe harbor only makes sense if the ADA is regulating the insurance business. “[U]nderwriting risks, classifying risks, or administering such risks” are fundamental business functions of insurance, which the ADA expressly contemplates. 42 U.S.C. § 12201(c)(1) (1990). Lastly, just because the ADA was not intended to disrupt the insurance

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market, it does not follow that it also does not regulate the business of insurance. The ADA clearly regulates insurance, despite it permitting some traditional practices in that market (like actuarially-based underwriting) to continue. Likewise, a parent is still regulating a child’s conduct when the child is grounded and limits are placed on TV viewing, even if the parent allows for an exception for the child to watch one TV episode. This is enough to dispose of the McCarran-Ferguson Act argument. The Supreme Court has held that McCarran-Ferguson Act preemption simply does not apply if the federal law governs the business of insurance. Barnett Bank of Marion Cnty. v. Nelson, 517 U.S. 25, 38 (1996). But for the sake of completion, the McCarran-Ferguson Act challenge also fails because Title III of the ADA does not supersede or impair state law. Mutual stipulated on appeal that it cannot show that its AIDS caps are consistent with state law. This is because state law does not expressly allow for such caps. Thus, Mutual lacks evidence to support its compliance with either the ADA or Illinois law. Our conclusion may mean that in future cases where insurance companies do invoke the safe harbor, federal courts will have to consider an insurer’s actuarial data, which is the math behind the insurer’s classifications. While this is a task normally left to state courts, the McCarran-Ferguson Act anticipated and permitted federal regulation of the business of insurance, leaving open the possibility of federal courts addressing such issues. With the passage of the ADA, Congress clearly carved out such a role for the federal courts when it expressly permitted a defense involving actuarial calculations. With these considerations in mind, the McCarran-Ferguson Act does not preempt Title III claims of disability discrimination against insurers.

v For the foregoing reasons, the decision of the trial court is affirmed.

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10 Commentary on Smith v. Rasmussen heather walter-mccabe

background In Smith v. Rasmussen,1 the US Court of Appeals for the Eighth Circuit held that Iowa’s Medicaid rule excluding coverage of gender confirmation surgery was consistent with the federal Medicaid Act, and therefore, the plaintiff’s claim under 42 U.S.C. § 1983, which authorizes a cause of action against a state for a “deprivation of any rights . . . secured by . . . [federal] law[],” should be dismissed. This case was situated in a historic period of struggle for transgender rights, which continues today. Persons who are transgender experience varying degrees of what some medical professionals have labeled “gender dysphoria,” defined by the Iowa Supreme Court in Good v. Iowa Department of Human Services2 as follows: Gender dysphoria is a diagnostic category in the Diagnostic and Statistical Manual of Mental Disorders-V(DSM-V), codified as diagnostic code section 302.85, which “refers to the distress that may accompany the incongruence between one’s experienced or expressed gender and one’s assigned gender.”3

Gender dysphoria can cause “individuals [to] experience anxiety, depression, suicidality, and other attendant mental health issues.”4 Recent research studies show that persons who are transgender experience suicide attempts at nearly nine times that of the population at large.5 Additionally, transgender persons can experience harassment and violence in schools when attempting to use

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249 F.3d 755 (8th Cir. 2001). 924 N.W.2d 853 (Iowa 2019). Id. at 856 (quoting Am. Psychiatric Ass’n, Diagnostic and Statistical Manual of Mental Disorders 451 [5th ed. 2013]). Good, 924 N.W.2d at 857. S.E. James et al., The Report of the 2015 U.S. Transgender Survey 5 (2016).

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the bathroom and in other aspects of their daily lives as a result of lack of understanding and bias against those who are transgender.6 The US legal system is unsettled about what protections for transgender persons will be recognized.7 The Smith case and related cases may be a part of how these decisions are made. The courts are a critical battleground for civil rights. The judiciary has often been able to move the needle on civil rights when legislatures have been unable or unwilling to move forward on a necessary change benefiting civil rights for an intended group.8 Civil rights for persons who are transgender are at a critical point historically. Despite gains in early 2016,9 changes in the administrative interpretation of the Patient Protection and Affordable Care Act Section 1557 (health care discrimination),10 Title VII (workplace discrimination), Title IX (educational nondiscrimination),11 and other federal nondiscrimination laws, the Trump administration’s interpretation of the rules provide decreased protections for persons who are transgender. Bostock v. Clayton County,12 decided by the Supreme Court in June 2020 as this chapter was being written, held that Title VII does protect persons who are transgender from workplace discrimination based on gender identity and sexual orientation as a part of protection from sex discrimination – in direct opposition to the Trump administration’s interpretation of these rules. The impact of this decision on these administrative rules has yet to be determined, and lawsuits have been filed.13 It is under these historic circumstances that we revisit Smith with an eye to how a feminist legal lens can move the discussion toward protection. John Smith (a pseudonym used in court to protect the plaintiff’s privacy) was assigned female at birth and experienced gender dysphoria,14 which experts 6 7

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Id. See, e.g., Nondiscrimination in Health and Health Education Programs or Activities, 85 Fed. Reg. 37160 (June 19, 2020); Bostock v. Clayton County, 140 S. Ct. 1731 (2020); WhitmanWalker Clinic v. HHS, No. 20-5331 (D.D.C filed Nov. 9, 2020). See, e.g., Brown v. Bd. of Educ., 347 U.S. 483 (1954); Loving v. Virginia, 388 U.S. 1 (1967). Nondiscrimination in Health Programs and Activities, 81 Fed. Reg. 31376 (May 18, 2016). See Nondiscrimination in Health and Health Education Programs or Activities, 85 Fed. Reg. 37160 (June 19, 2020). See Br. for the US as Amicus Curiae Supporting Affirmance in No. 17-1618 and Reversal in No. 17-1623; Dear Colleague Letter from Sandra Battle, Acting Assistant Secretary for Civil Rights, and T.E. Wheeler II, Acting Assistant Attorney General for Civil Rights (Feb. 22, 2017). 140 S. Ct. 1731 (2020). See, e.g., Whitman-Walker Clinic v. HHS, No. 20-5331 (D.D.C filed Nov. 9, 2020). At the time of the case, this was still called gender identity disorder. See American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders 537–538 (4th ed. 1994). I will use the currently more accepted term gender dysphoria.

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testified is treated by counseling, medication, and, sometimes, surgery to conform to the gender identity of the person, here male. Mr. Smith received counseling, medication, and a breast reduction and contouring surgery, paid for by Medicaid due to medical issues not related to his gender. Mr. Smith and his treating psychiatrist agreed that surgery was medically necessary to treat Mr. Smith’s gender dysphoria. His request was denied under an Iowa Medicaid rule specifically excluding coverage of gender confirmation surgery (then known as sex reassignment surgery). Mr. Smith brought suit, seeking an order requiring the Iowa Department of Human Services (IDHS) to pay for the final stage of his gender transition, a phalloplasty, surgery creating a penis. Mr. Smith brought a Section 1983 claim against the IDHS director asserting that the state’s denial of Medicaid coverage for his surgery was in violation of federal Medicaid statutes and regulations that require a state to abide by reasonable standards when it determines the extent and scope of services it will provide. He challenged the substance of the state’s exclusionary rule as well as the procedure the state had followed to adopt it. The district court denied IDHS’s request for summary judgment and granted the plaintiff a permanent injunction prohibiting IDHS from denying Medicaid payment for Mr. Smith’s surgery. It held that federal Medicaid law provided a basis for the state to cover the costs of gender confirmation surgery, that the state’s rule excluding coverage of gender confirmation surgery was an unreasonable restriction under federal Medicaid law, and that the state had not followed a reasonable procedure in adopting its rule. The district court excluded testimony of a general psychiatrist presented by IDHS as an expert witness, based on his lack of relevant expertise. IDHS appealed, arguing that: (1) the federal Medicaid Act did not endow Mr. Smith with an enforceable right, as required to support a Section 1983 claim; (2) the district court erred in excluding the testimony of its expert witness; and (3) the district court erred in its conclusion that the Iowa regulation violated federal Medicaid law.

original opinion The Eighth Circuit reversed the district court’s injunction, which would have required the state to cover Mr. Smith’s surgery. The court denied his Section 1983 challenge to the state’s ban on coverage for gender confirmation surgery, holding that the administrative process for creating the exclusion was not “problematic, unreasonable, or inadequate”15 and that, given the rulemaking body considered medical evidence, the decision itself was 15

Smith v. Rasmussen, 249 F.3d 755, 761 (8th Cir. 2001).

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not “unreasonable, arbitrary, or inconsistent with the requirements of the federal Medicaid statute.”16 To reach a holding in the IDHS’s favor in Smith, the Eighth Circuit had to distinguish a case it had decided twenty-one years earlier. In Pinneke v. Preisser,17 the Eighth Circuit held that federal Medicaid law prohibited Iowa’s blanket ban on coverage for gender confirmation surgery as a treatment for gender dysphoria (the court used the term “gender identity disorder”) because the blanket ban was discrimination based on diagnosis.18 The Pinneke court held that the determination of whether or not a requested service is “‘medically necessary’ rests with the individual recipient’s physician and not with clerical personnel or government officials.”19 Relying on an earlier state court precedent,20 the court found that medical professionals had indeed determined that for some transgender persons21 surgery was the only medical solution. Because Iowa’s rule categorically determined that such surgeries were merely cosmetic in nature and not medically necessary, the court found it was “an arbitrary denial of benefits based solely on ‘diagnosis, type of illness, or condition’” in violation of federal Medicaid regulations.22 In addition to the substantive issues, the court discussed procedural issues with the rulemaking. Not only was the decision arbitrary, but IDHS had promulgated the rule without following required formal rulemaking procedures or seeking input from the medical community. The Smith court distinguished the case at bar from Pinneke on the grounds that Mr. Smith’s Medicaid benefits were governed by different federal requirements from Ms. Pinneke’s. The state’s obligations under federal Medicaid law regarding the services it covers vary depending on the eligibility category of the recipient. Persons who qualify as “categorically needy” are those whom the state must cover as a condition of accepting federal Medicaid funds.23 Other groups may be covered (with matching federal funds) at the state’s discretion. “Medically needy” Medicaid recipients are covered at the discretion of the state. Ms. Pinneke was covered under the “categorically needy” rules, whereas Mr. Smith fell under the “medically needy” guidelines. For categorically needy recipients, “the State may not arbitrarily deny or reduce the amount, 16 17 18 19 20 21 22 23

Id. 623 F.2d 546 (8th Cir. 1980). See 42 C.F.R. § 440.230(c). Id. at 550. Doe v. Minn. Dep’t of Pub. Welfare, 257 N.W.2d 816, 819 (Minn. 1977). The court used “transsexual” based on the terminology common at the time of the opinion. Pinneke, 623 F.2d at 549. 42 U.S.C. § 1396a(a)(10)(A)(i).

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duration or scope of, such services to an otherwise eligible individual solely because of the diagnosis, type of illness, or condition.”24 Pinneke found the state’s exclusionary rule violated this provision because it discriminated on the basis of the plaintiff’s diagnoses – her reason for needing surgery. But the prohibition on diagnosis discrimination does not apply to Mr. Smith, who falls within the medically needy category. The court correctly noted that federal Medicaid law gives more discretion to states to choose which services they provide to those in the medically needy category, but once a state chooses to provide a service for medically needy individuals, the federal Medicaid statute obligates the state to adopt “reasonable standards . . . for determining eligibility for and the extent of medical assistance”25 and accompanying regulations require the state to ensure that any service it covers is “sufficient in amount, duration, and scope to reasonably achieve its purpose.”26 The court held, however, that IDHS’s exclusionary rule did not violate the federal reasonableness requirement. The court’s reasoning relied heavily on evidence suggesting a lack of medical consensus that IDHS considered in promulgating the rule. The Smith court also distinguished Pinneke on the grounds that IDHS had followed a different procedure to adopt its new prohibition on coverage for gender confirmation surgery. IDHS used formal rulemaking procedures to adopt the rule Mr. Smith challenged, including input from a committee of medical providers. IDHS argued that the legal and medical landscapes had changed since Pinneke. The Smith court relied on this rulemaking process to determine that, in the aftermath of Pinneke, IDHS had followed formal rulemaking procedures and sought out information from the medical community.27 Therefore, the court reasoned, it was not required to follow precedent from Pinneke in the Smith case. The court ultimately ruled in favor of IDHS and determined that the rule excluding gender confirmation surgery, which was the basis for denying coverage for Smith’s surgery, could stand.

feminist judgment In his revised opinion for the majority, Professor Craig Konnoth, writing as Judge Konnoth, changes the outcome of the case. He does not simply name 24 25 26 27

Pinneke, 623 F.2d at 549 (quoting 42 C.F.R. § 440.230(c)). 42 U.S.C. § 1396a(a)(17). 42 C.F.R. § 440.230(b). The medical committee consulted by IDHS reviewed the literature and found a lack of consensus on the medical necessity of gender confirmation surgery; on this basis, they recommended that IDHS should not cover surgery for gender confirmation.

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the state rule as contrary to federal Medicaid law, but firmly calls on the department to recognize and remedy its ongoing pattern of discrimination. Konnoth relies on legal precedent and up-to-date (for the time of the case) medical experts in transgender health as he examines the IDHS Medicaid rule excluding coverage for gender confirmation surgery. Konnoth begins his legal analysis with a strong endorsement of Mr. Smith’s enforceable right of action under the Medicaid Act. Because the original opinion found the Iowa rule consistent with federal Medicaid law, the court did not address IDHS’s assertion that Smith lacked an enforceable right under the Medicaid Act, as required to support a Section 1983 claim. Next, Konnoth turns to analysis of IDHS’s argument that its exclusionary rule was consistent with federal Medicaid law. Like the original Smith court, Konnoth finds that Pinneke is not dispositive given Mr. Smith’s status as a medically needy Medicaid recipient, rather than a categorically needy recipient. However, Konnoth finds that the exclusionary rule violates the federal reasonableness requirements that do apply to Mr. Smith’s coverage. Konnoth looks to the motives and underlying rationale behind the state’s rule, which serve to differently situate persons who are transgender from those who are not transgender. Konnoth thus requires IDHS to justify as non-arbitrary the rule’s facial discrimination on the basis of sex. Konnoth’s sound analysis of “on the basis of sex,” in terms that fit within the precedents of the Eighth Circuit, reveals what was possible within existing precedents at the time. Konnoth offers two main arguments to support a finding of sex discrimination. First, he discusses the disparate impact of the rule creating different criteria for the sexes. He posits that phalloplasty is available for persons assigned male at birth who have some sort of trauma, but not for persons assigned female at birth. He also discusses availability of mastectomies and breast reduction surgeries for those assigned female at birth but not for those assigned male at birth, thus facially discriminating and adding additional burdens on the basis of sex. Konnoth’s second argument is that this distinction promotes gender stereotypes. His conclusion is that IDHS was wrong to “[d]isparag[e] the surgery as ‘cosmetic,’ even though most medical authority agrees that at least in some cases, it clearly serves valuable medical purposes [and that this disparagement] underscore[d] the Department’s hostility to a certain group of gendernonconforming Medicaid recipients.” This attention to gender stereotypes is important given the line of Title VII work discrimination cases exploring the boundaries of workplace discrimination protections under sex discrimination. Feminist legal theory has long argued that, as Konnoth writes (beginning with

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a reference to a law review article by Justice Ruth Bader Ginsburg),28 “‘[n]obody should be forced into a predetermined role on account of sex,’ or punished for failing to conform to prescriptive expectations of what behavior is appropriate for one’s gender.” He frames the issue of diagnosis discrimination as one that merely serves to facilitate discrimination for failing to conform to gender stereotypes. This framework makes use of anti-essentialist feminist legal theory, which: liberates us to pursue a variety of solutions to different legal problems, because it recognizes that injustice arises in a context of relations that are complicated by the multiple identities of women. The categories in which we classify oppression . . . are not universal categories. Instead they are based on the commonalities and allegiances that we create in specific cases out of our multifaceted identities in order to combat oppression.29

In addition to finding that the substance of the exclusionary rule discriminates on the basis of sex, Konnoth addresses the reasonableness of the process IDHS followed in promulgating the rule. IDHS used a formal rulemaking process following Pinneke to rewrite its exclusionary rule. The process included a committee comprised of medical professionals. Though the medical professionals weighed in on the utility of gender confirmation surgery (finding that the medical community had not reached consensus), the committee members did not have expertise in gender dysphoria and the nuances of its treatment. Their findings were based largely on literature reviews. Konnoth’s willingness to consider the impartiality of the committee, while at the same time recognizing that the committee did not have the needed expertise to make a recommendation that would fit the need to avoid an arbitrary decision, is an important distinction from the original ruling.

discussion The history of gender identity within feminist frameworks has been a difficult one.30 Discussions regarding what constitutes a woman have included both biology and societal constructs in different eras of feminist thought. Early feminist theory has been criticized as being dominated by white assigned 28

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Ruth Bader Ginsburg, Gender and the Constitution, 44 U. Cin. L. Rev. 1, 1 (1975) (quoting Olof Palme). Graham Mayeda, Re-imagining Feminist Theory: Transgender Identity, Feminism, and the Law, 17 Can. J. Women & L. 423 (2005). See Lori Chambers, Unprincipled Exclusions: Feminist Theory, Transgender Jurisprudence, and Kimberly Nixon, 19 Can. J. Women & L. 305 (2007); Demoya R Gordon, Transgender Legal Advocacy: What Do Feminist Legal Theories Have to Offer?, 97 Cal. L. Rev. 1719 (2009).

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female at birth (AFAB) persons to the exclusion of other races, ethnicities, and gender identities.31 More recent feminist thought has been more intersectional and inclusive of beyond those who are white AFAB, including those in the transgender community. There are still some feminists who do not consider transgender persons to be a “legitimate” representation of their identified gender. Their arguments, which are rightly criticized by other feminists for their gender essentialism, characterize transgender women as men who have benefited from privilege and transgender men as women who are simply striving to benefit from male privilege. Though these are not dominant schools of feminist thought, they need to be recognized when constructing arguments regarding sex discrimination where gender identity is involved. As Lois Chamber writes: Transgender equality claims bring into question the stability and coherence of the category “woman”. . . . One of the fundamental assertions of early feminism (and perhaps the idea that has had the greatest popular acceptance and influence in the court) is the idea that “sex” defined as biology and “gender” defined as the attributes constructed around biology are separable – in other words, that “woman is made, not born.”32

Konnoth appears to recognize the debates within feminism over transgender identities and has intentionally crafted his arguments without asking for a dispositive recognition of sex as gender identity. He writes: At the outset, we note that we do not come to this conclusion because “transsexualism” equates to “sex” as a lexicological matter – a conclusion that the law of this circuit would, in any case, prohibit. Sommers v. Budget Mktg., Inc., 667 F.2d 748, 749 (8th Cir. 1982) (discrimination based on “sex” under Title VII does not equate to discrimination based on “transsexualism” because the latter has a different meaning).

He, instead, discusses differences in accessing the same medical remedy based on sex assigned at birth. This approach allows him to avoid passing judgment on whether gender identity is sex. Konnoth’s use of language is also notable. The language judges use in such cases and the way they discuss vulnerable persons can have an impact on how those persons are viewed.33 Prior to drafting his rewritten opinion, Konnoth

31 32 33

See, e.g., Mayeda, supra note 31. Chambers, supra note 32. Walter Pierre Bouman et al., Language and Trans Health, 18 Int. J. Transgenderism 1 (2017); Margit Tavits & Efrén O. Pérez, Language Influences Mass Opinion toward Gender and LGBT Equality, 116 Proc. Natl. Acad. Sci. 16781 (2019).

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reached out to experts on the topic to determine how Mr. Smith was likely to have referred to himself in 2001. It was determined that transsexual, rather than the current more widely used term transgender, would have been more likely for that time. The court and others at the time used the term sex reassignment surgery rather than the current term gender confirmation surgery. Though gender “reassignment” surgery is a reasonable term, the term gender “confirmation” surgery moves away from suggesting that the gender is being changed to the surgery aligning the body with the gender of the person. Konnoth takes care to be considerate in the way he describes the surgery in the case. Though he does not use the more contemporary term, as it would have been unlikely for 2001, he uses “surgery” where possible to avoid the dated term. Much has changed in the decades since Smith was decided but some things have remained the same. Since Smith the medical community has continued to evolve in its treatment of gender dysphoria. Medical interventions, including surgery, are largely viewed as not simply reasonable, but necessary for some transgender individuals.34 The World Professional Association for Transgender Health includes surgery as one of its recommended treatments.35 Surgery is not medically appropriate or necessary in all cases, but it is clearly within the range of standard of care to be considered. As the medical community’s understanding of treatment for gender dysphoria continues to evolve, the administrative rulemaking processes should take these developments into account. When they do not, the courts, as Konnoth does in his rewrite of Smith, can move them to do so. In 2007, the state of Iowa added “gender identity” to the list of bases on which discrimination is prohibited under the Iowa Civil Rights Act (ICRA).36 Despite these new state statutory protections and case law such as Pinneke, Iowa continued to refuse gender confirmation surgery for patients with gender dysphoria under state Medicaid rules. Smith was surrounded by a pair of bookend cases in Iowa, both ruling that a blanket exclusion of coverage for gender confirmation surgery in Iowa’s Medicaid program was disallowed. The 2019 companion to Pennike (which was decided in 1970), is Good v. Iowa Department of Human Services.37 In Good, two transgender women sought coverage for their gender confirmation surgeries. The court found that the 34

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Samuel Rosh, Beyond Categorical Exclusions: Access to Transgender Healthcare in State Medicaid Programs, 51 Colum. J. L. Soc. Probs. 1 (2017). World Professional Association for Transgender Health, Standards of Care (Version 7 2012), [https://perma.cc/KD6G-QCN4]. Iowa Code § 216.7(1)(a). 924 N.W.2d 853 (Iowa 2019).

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Medicaid Exclusionary Rule violated the ICRA and required the state to provide coverage for the procedure. Following the ruling, the Iowa legislature amended the ICRA to categorically disallow Medicaid coverage of gender confirmation surgery.38 Plaintiffs are challenging the new Iowa statute excluding gender confirmation surgery from Medicaid coverage, relying heavily on the Supreme Court’s 2020 decision in Bostock v. Clayton County. The lower court found their case was not ripe for adjudication given that the petitioners had not yet exhausted administrative appeals, and the Iowa Supreme Court declined to review the lower court’s decision.39 The plaintiffs indicated that they would work to complete the administrative process so they may continue to fight for their rights. Konnoth drafted his rewritten opinion prior to Bostock. Notably, Justice Gorsuch’s language in Bostock is similar to Konnoth’s language in his rewritten Smith opinion. The Bostock opinion asserts: Today, we must decide whether an employer can fire someone simply for being homosexual or transgender. The answer is clear. An employer who fires an individual for being homosexual or transgender fires that person for traits or actions it would not have questioned in members of a different sex. Sex plays a necessary and undisguisable role in the decision, exactly what Title VII forbids.40

Justice Gorsuch used an approach, which Katie Eyer proposed and analyzed extensively in 2018,41 that examines the “ordinary public meaning” of the text of the law. In using this approach, Gorsuch did not rely on a determination of whether sexual orientation or gender identity are protected per se under Title VII. Rather, he relied solely on sex discrimination, reasoning that the actions of the employees would not have resulted in the same outcome by the employers but for their sex. He noted that Title VII does not include language requiring that the action be based “solely” on sex or even “primarily because of” sex. Justice Gorsuch reasoned that, without such narrowing language, “if changing the employee’s sex would have yielded a different choice by the employer – a statutory violation has occurred.”42

38

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Iowa Code § 216.7(3) (“This section shall not require any state or local government unit or taxsupported district to provide for sex reassignment surgery or any other cosmetic, reconstructive, or plastic surgery procedure related to transsexualism, hermaphroditism, gender identity disorder, or body dysmorphic disorder.”). Covington v. Reynolds ex rel. State, 949 N.W.2d 663 (Iowa Ct. App. 2020). Bostock v. Clayton County, 140 S. Ct. 1731, 1737 (2020). Katie R. Eyer, Statutory Originalism and LGBT Rights, 54 Wake Forest L. Rev. 63 (2019). Bostock, 140 S. Ct. at 1741.

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At the time of this writing, disputes over Medicaid recipients’ access to gender affirming care continue. Despite the obvious implications of Bostock, the Trump administration’s final HHS rule specifically interpreting Section 1557 nondiscrimination protections regarding sex discrimination in health care as not inclusive of gender identity became effective on August 18, 2020.43 In May 2021, the Biden administration announced that it would interpret Section 1557 and Title IX to include discrimination on the basis of gender identity and sexual orientation. It is highly likely that future cases will decide that this interpretation is in line with the Court’s decision in Bostock that sexual orientation and gender identity are included in protections against sex discrimination. In this historic moment for decisions impacting health care access for transgender individuals, we wait to see courts’ reasoning in additional cases impacting health.

SMITH V. RASMUSSEN, 249 F.3D 755 (8TH CIR. 2001)

craig konnoth, circuit judge, delivered the opinion of the court

i As Yogi Berra is believed to have said – “it’s déjà vu all over again.” Yogi Berra, The Yogi Book: I Really Didn’t Say Everything I Said! 30 (1998). Over two decades ago, we held that Iowa’s Medicaid program was required to cover surgery pursuant to a diagnosis of Gender Identity Disorder (GID). Pinneke v. Preisser, 623 F.2d 546 (8th Cir. 1980). Iowa’s Medicaid agency, the Department of Human Services (the Department) appears to have had trouble following that directive: A few years after we issued our ruling, it denied coverage in another case, allegedly in “error.” Grey Br. 37. Following that denial, the Department proceeded with a rulemaking that concluded with a blanket rule denying coverage for such surgery (hereinafter, the “exclusion regulation”), which the Plaintiff challenged. The district court invalidated the rule, and the Department appealed. We conclude that the exclusion regulation discriminates based on sex, thereby failing to satisfy the Medicaid statute’s reasonableness requirements. We therefore affirm the district court. 43

See Nondiscrimination in Health and Health Education Programs or Activities, 85 Fed. Reg. 37160 (June 19, 2020).

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ii A The Plaintiff –who has filed suit under the pseudonym “John Smith” –experiences what his pleadings call gender dysphoria. Although Smith was designated as female at birth, he has always, to his recollection, identified and presented as male and engaged in activities that code as masculine. At the age of four, if not before, he claims, he would “fight . . . off” his parents when they tried to make him wear a dress. Smith v. Rasmussen, 57 F. Supp. 2d 736, 740 (N.D. Iowa 1999). He would generally wear male attire – with few enough exceptions that he remembers them easily: To satisfy his parents’ wishes, he wore a dress to his high school graduation and to his elder sister’s wedding. However, on another occasion, Smith chose to leave the school choir rather than wear dresses as school officials demanded. As can be imagined, puberty proved challenging – Smith was male, but his body developed female secondary sex characteristics. Perhaps unsurprisingly, given the burdens he has encountered, Smith has been diagnosed with other psychological conditions in addition to gender dysphoria. He has a long-standing diagnosis of depression, a diagnosis of atypical bipolar disorder, as well as a history of psychotic episodes, such as hallucinations and hearing voices (though none have been recent). Smith takes medication and has undergone psychotherapy for these conditions. The etiology of these conditions is somewhat unclear. While Smith struggled with gender dysphoria, he was also involved in a car accident in 1978 that injured his larynx, permanently affected his speech, and caused a brain stem injury. His psychotic episodes are also linked to those injuries and to medication taken for depression; further, Smith describes some visions as arising from his Oglala (Lakota) spirituality. Smith receives Iowa Medicaid assistance through the Department for his various medical conditions. Smith did obtain undergraduate and graduate degrees in Clinical Psychology in 1992 and 1993, despite disabilities arising from the car accident. However, those disabilities leave him unable to work. He receives some income from the settlement resulting from the accident. Smith is now forty-one and is male – both in terms of physical appearance and in the eyes of the law. He has “found it difficult or impossible to use the women’s restroom in public places, and indeed he has consistently chosen to use the men’s room.” Id. Further, Smith has lived as a man for many years both in private and public. This satisfies medical recommendations that he undergo a “real life test” of living in his desired gender role prior to undergoing gender confirmation treatment. Id.

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Smith has also pursued gender confirmation treatments. As he completed his studies, Smith was diagnosed with endometriosis, fibrocystic breast disease, and dysmenorrhea. Accordingly, in 1992, the Department paid for a hysterectomy with removal of one ovary. Medicaid later paid for another surgery to remove Smith’s second ovary when he presented with similar symptoms to those that prompted the first surgery. While the Department disputes the characterization, for Smith, the surgeries advanced gender confirmation goals. Smith has taken further steps toward gender confirmation. In January of 1997, he began receiving male hormone treatment, including intramuscular injection of testosterone. On February 20, 1997, Smith himself paid for bilateral breast reduction and male chest contouring, after the Department denied the claim “on the ground that the procedure constituted sex reassignment surgery not covered by Medicaid benefits.” Id. At issue in this case is payment for the final stage of Smith’s journey toward gender confirmation – a phalloplasty, namely the surgical construction of a new penis. As he reached the end of his particular journey toward gender confirmation, Smith sought to receive a phalloplasty. As the district court found, Smith’s desire to complete surgical sex reassignment . . . [is] based on his belief that his gender identity or sexual identity is a major component of who he is as a person, how he feels, thinks, behaves, and reacts. In short, Smith’s gender is “fundamental” to his identity. Completion of a phalloplasty, Smith states, and the court finds, will allow him to lead something approaching a more “normal life,” fulfilling his “need to be whole.”

Id. Without such a surgery, the court found, Smith would encounter real and “[p]ractical problems” ranging from “dating,” to “using public restrooms, and otherwise passing for male in private or enclosed areas.” Id. Nor is Smith’s claim based purely on his ipse dixit. Sharon Satterfield, Smith’s primary treating psychiatrist, who is also a professor at the University of Minnesota Medical School and who has treated over 1,000 transsexual patients, also supports his treatment plan. As with the 1997 surgery, however, the Department continues to deny payment on the ground that the phalloplasty only serves Smith’s interest in gender transition, and violates the rules of the Iowa Medicaid program, which prohibit such coverage. It is to the history of this program that we now turn. B Medicaid is a cooperative federal-state program that covers the medical needs of financially needy individuals. See 42 U.S.C. § 1396. Federal law binds a

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state accepting Medicaid funds to use them according to federal requirements, including a requirement that coverage exclusions must be reasonable. The federal government provides half or more of the funding for the program, while the state carries out plan administration. States can choose whether to participate in Medicaid. If they participate, they must submit plans for federal approval, which “establish ‘reasonable standards . . . for determining . . . the extent of medical assistance under the plan which . . . are consistent with the objectives of [the Medicaid Act].’” Beal v. Doe, 432 U.S. 438, 441 (1977) (quoting 42 U.S.C. § 1396a(a)(17)). States have some limited discretion in determining both eligibility and benefits. First, in terms of eligibility, while states must provide coverage to so-called categorically needy individuals, they may optionally choose to provide coverage to so-called medically needy individuals. The financial resources of the medically needy exceed those of the categorically needy, but their medical expenses are higher than they can bear. Atkins v. Rivera, 477 U.S. 154, 157 (1986). Similarly, federal law designates certain benefits as mandatory (e.g., early, periodic screening, diagnosis, and treatment for children) or optional (e.g., prescription drug coverage). However, once a state commits to provide an optional service for an optional category of individuals, it must ensure that the service is “sufficient in amount, duration, and scope to reasonably achieve its purpose.” 42 C.F.R. § 440.230(b). Thus, even when it comes to medically needy individuals – a category into which Smith falls – the state is bound by a reasonableness requirement. In Pinneke v. Preisser, as we discuss in greater detail below, we held that denying surgery pursuant to a GID diagnosis for a categorically needy beneficiary violated the Medicaid statute’s requirements. The Department partially altered its regulation, but, due to an “error,” failed to do so completely. Grey Br. 36–37. As a result, ten years after Pinneke, in 1990, the Department once more denied a claim for gender confirmation surgery payment, though it reversed its decision after litigation was filed in 1991. Prompted by this incident, however, the Department began a process which resulted in the promulgation of the challenged rule on December 14, 1994. It was added by an amendment proposed and promulgated after the federal Department of Health and Human Services approved Iowa’s last state plan on January 24, 1994. First, the Department commissioned a report from the Iowa Foundation for Medical Care (IFMC), specifically aimed at determining the appropriateness of continued coverage of surgery pursuant to a GID diagnosis. IFMC is an organization created by the Iowa affiliate of the American Medical Association, and it is the designated “Peer Review Organization” (PRO) for

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the Medicare program in Iowa, Nebraska, and Illinois, and the Iowa and Nebraska Medicaid programs. IFMC assesses the appropriateness and medical necessity of the medical services provided under these programs based on its review of the medical literature, insurance practices, and physician opinion. The report claimed that medical opinion was divided. While some professionals claimed that such surgery was appropriate for certain patients, “[t]here are numerous treatment options available” for gender dysphoria, “[t]here is controversy in the medical profession regarding the treatment of Gender Identity Disorders, particular with sex reassignment surgery,” and “[t]he literature does not provide the reader with a consensus opinion regarding whether [surgery] is an appropriate treatment.” Blue Br. at 53. Following receipt of the report, on November 9, 1994, the Department published a notice of a proposed amendment to Iowa Medicaid rules to exclude surgery pursuant to a GID diagnosis and solicited public comment. This notice offered the Department’s rationale for the proposed rule and referred to the IFMC report. XVII Iowa Admin. Bull. 730 (Nov. 9, 1994). Only one formal comment was received – opposing the proposed amendment – from attorney Thomas Krause, the Plaintiff counsel in this case. On December 14, 1994, the Department adopted the amendment. The amended rule sets out its exclusion by classifying gender confirmation surgery as a disallowed cosmetic procedure. The rule excludes from coverage certain classes of “[c]osmetic, reconstructive, or plastic surgery” into which falls the surgery at issue here. 441 Iowa Admin. Code r. 78.1(4). Cosmetic surgery that “is performed primarily for psychological purposes . . . but which does not correct or materially improve the bodily functions” is excluded. Id. But “a surgical procedure [that] primarily restores bodily function, whether or not there is also a concomitant improvement in physical appearance” is allowed. Id. The rule explicitly notes that “[s]urgeries for the purpose of sex reassignment are not considered as restoring bodily function and are excluded from coverage.” Id. On the other hand, “under certain limited circumstances payment . . . may be provided [for] cosmetic . . . surgery” to “[c]orrect[] . . . a congenital anomaly; . . . [r]estor[e] . . . body form following an accidental injury; or . . . [r]evis[e] . . . disfiguring and extensive scars resulting from neoplastic surgery.” Id. The rule provides no explanation for this unlooked-for generosity – but lest it be taken too far, it repeats once more, for good measure: Cosmetic . . . surgery performed in connection with certain conditions is specifically excluded. These conditions are . . . [p]rocedures related to transsexualism, hermaphroditism, gender identity disorders, or body dysmorphic

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disorders . . . [b]reast augmentation mammoplasty, surgical insertion of prosthetic testicles, penile implant procedures, and surgeries for the purpose of sex reassignment.

Id. The exclusion, therefore, albeit belabored, is thorough.

C After the Department refused to cover Smith’s phalloplasty, he filed suit under 42 U.S.C. § 1983 on May 19, 1997 to challenge the exclusion rule. He alleges, in relevant part, that Medicaid statutes and regulations yield an enforceable federal right to “reasonable standards” for the determination of the extent and scope of covered services. He argues that the exclusion rule is unreasonable. The district court denied the Department’s motion for summary judgment. Smith v. Palmer, 24 F. Supp. 2d 955, 969 (N.D. Iowa 1998). It then held a bench trial, where it denied the Department’s motion to dismiss, and held, inter alia, that Smith has an enforceable federal right under § 1983 to reasonable application of Medicaid regulation, and that the exclusion rule violates that right. Smith, 57 F. Supp. 2d at 740. The Department appealed.

iii A Smith advances his claim under 42 U.S.C. § 1983, which authorizes a cause of action against a state for a “deprivation of any rights . . . secured by . . . [federal] law[].” The “rights” to which Smith points are memorialized, inter alia, at 42 U.S.C. § 1396a(a)(17), which requires a state to “include reasonable standards . . . for determining eligibility for and the extent of medical assistance under the plan.” The Department argues that Smith lacks a cause of action under this provision on two grounds. First, it claims that the reasonableness requirement simply does not apply to Smith’s claim. Rather, the “extent of medical assistance” that is subject to a reasonableness requirement refers only to the amount the state pays for a service it has decided to provide. If the amount paid is reasonable, there is no occasion for the courts to examine whether the service should be provided in the first place. The Department’s argument is foreclosed by our precedent. Hodgson v. Bd. of Cnty. Comm’rs. Hennepin Cnty., 614 F.2d 601, 610 (8th Cir. 1980) (“‘Extent of medical service,’ then, refers both to the amount of subsidy for any given service and to the extent of

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services provided.” [emphasis added]); see Drake v. Scott, 812 F.2d 395 (8th Cir. 1987) (“One panel of this Court is not at liberty to disregard a precedent handed down by another panel. Only the Court en banc can take such action.”). Second, the Department argues that Smith lacks a right of action under the statute because the provision does not confer it “unambiguously.” Suter v. Artist M., 503 U.S. 347, 356 (1992). In Suter and Blessing v. Freestone, 520 U.S. 329 (1997), the Supreme Court has cautioned that a plaintiff only has a cause of action under § 1983 if the relevant federal “law” at issue clearly confers a right upon the plaintiff to enforce a particular federal legal obligation. The Department claims that the federal law at issue here – § 1396a(a)(17) – does not clearly bestow upon plaintiffs such as Smith the right to enforce the reasonableness requirement. Given our precedent, which has historically recognized that Medicaid beneficiaries have an enforceable right to sue for unreasonable denials of service, the Department faces an uphill battle. See Hodgson, 614 F.2d 601 (abortion); Meusberger v. Palmer, 900 F.2d 1280 (8th Cir. 1990) (pancreas transplant); Weaver v. Reagen, 886 F.2d 194 (8th Cir. 1989) (AIDS prescription drugs); Ellis v. Patterson, 859 F.2d 52 (8th Cir. 1988) (child liver transplant); Meyers v. Reagan, 776 F.2d 241 (8th Cir. 1986) (assistive communication device); Pinneke, 623 F.2d. 546 (gender transition surgery). To be sure, many of our cases predate the Supreme Court’s most recent pronouncements regarding § 1983 in Suter and Blessing. However, while those cases are relevant to our analysis, they do not concern the rights bestowed by the Medicaid Act. Suter concerned the Adoption Assistance and Child Welfare Act of 1980, and Blessing concerned rights under the Aid to Families with Dependent Children (AFDC) program. Closer to the mark is Wilder v. Virginia Hospital Ass’n, which held that a federal requirement that hospitals receive “reasonable and adequate” Medicaid payments created a right enforceable by medical providers. 496 U.S. 498, 503 (1990). Even as they distinguish Wilder, Suter and Blessing cite it as good precedent. Suter, 503 U.S. at 357; Blessing, 520 U.S. at 341. As Blessing explains, three factors determine whether a federal statute creates an enforceable right: First, Congress must have intended that the provision in question benefit the plaintiff. Second, the plaintiff must demonstrate that the right assertedly protected by the statute is not . . . ‘vague and amorphous’ . . . Third, the statute must unambiguously impose a binding obligation on the States. In other words, the provision giving rise to the asserted right must be couched in mandatory rather than precatory terms. Id. at 340–341.

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The Medicaid provision at issue in Wilder satisfied these requirements. As a provision requiring payment to hospitals, it clearly benefited the plaintiff medical providers. Similarly, the statute’s “reasonable and adequate rates” requirement was sufficiently “well-defined.” Id. at 341 (citing Wilder, 496 U.S. at 511–512). Finally, the provision was cast in “mandatory” terms. Wilder, 496 U.S. at 512 (noting that “the state plan ‘must’ provide for payment . . . of hospitals according to rates the State finds are reasonable and adequate” [quoting Medicaid statute]). The requirements are similarly satisfied here. The statute clearly seeks to aid beneficiaries such as Smith. Next, the reasonableness requirement here, as in Wilder, is sufficiently well-defined. Further, Wilder relied on Medicaid regulations that further clarified this reasonableness requirement. Here, too, Plaintiff points to 42 C.F.R. § 440.230(a)–(b), which clarifies the reasonableness requirement as applied to beneficiaries: “The plan must specify the amount, duration, and scope of each service that it provides for . . . [e]ach covered group of medically needy,” and “[e]ach service must be sufficient in amount, duration, and scope to reasonably achieve its purpose.” 42 C.F.R. § 440.230(a)–(b). Finally, as in Wilder, the federal Medicaid condition here “is cast in mandatory rather than precatory terms.” Id. at 512. “The state plan ‘must,’” id. (citations omitted), include “reasonable standards . . . for determining eligibility for and the extent of medical assistance.” 42 U.S.C. § 1396a (a)(17). US Supreme Court case law reaffirms, rather than undermines, our holdings that the Medicaid statute creates an enforceable right for beneficiaries like Smith. Having identified an enforceable right, to resolve the case, we must now elucidate the contours of that right. At the outset, we note that, in addition to the foundational issues at stake in this case, the Department also objects to the exclusion of the testimony of its expert, Dr. Kavalier. To be sure, as a general psychiatrist, Dr. Kavalier has treated many patients with sexual disorders. But only one, with whom he had limited contact, eight years before the trial, had GID. His expert testimony was based on two interviews with Smith, a review of his file, and a literature review. Given his lack of expertise in GID as well as personal knowledge of Smith, the district court did not abuse its discretion in concluding that Kavalier did not qualify as an expert in the specialized discipline of GID. Indeed, Kavalier himself acknowledged that his opinion disagreed with respected medical sources in the field. See Dancy v. Hyster Co., 127 F.3d 649, 651–52 (8th Cir.1997) (applying abuse of discretion standard).

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B 1. Pinneke v. Preisser We begin our analysis with Pinneke v. Preisser, where we approved a categorically needy Medicaid beneficiary’s claim for coverage for surgery pursuant to a GID diagnosis. In Pinneke, we held that a denial of gender confirmation surgery for GID constituted prohibited discrimination based on diagnosis. We based our holding on a Medicaid regulation, namely, 42 C.F.R. § 440.230(c). As Section 440.230(c) provides in relevant part, the Department “may not arbitrarily deny or reduce the amount, duration, or scope of a required service under §§ 440.210 . . . solely because of the diagnosis, type of illness, or condition.” Id. (emphasis added). In turn, Section 440.210 renders surgery a required service. It provides that inpatient hospital services be provided to categorically needy individuals, including surgery. See 42 C.F.R. § 440.210(a) (1) (requiring “services defined in [42 C.F.R.] § 440.10” which include “inpatient” services); Addison Gilbert Hosp. v. Rate Setting Comm’n, 453 N.E.2d 424, 428 n. 10 (1983) (listing surgery as one of these services). As “surgery was the only medical treatment available to relieve or solve the problems” the plaintiff experienced, we held that “absolutely excluding” the surgery for GID was an arbitrary denial of covered benefits based solely on the “diagnosis, type of illness, or condition.” Pinneke, 623 F.2d at 548–550. Our reasoning in Pinneke, however, is not dispositive here. The prohibition on diagnosis discrimination in Section 440.230(c) applies only to required services. And surgery is only a required service for categorically needy individuals. See 42 C.F.R. § 440.210, § 440.10. While the plaintiff in Pinneke was categorically needy, Smith is a medically needy individual. Surgery is not a required service under Section 440.230(c) for medically needy individuals. States “have the option of providing somewhat different . . . medical services to [medically needy] individuals.” Beal v. Doe, 432 U.S. 438, 440 n. 2 (1977). The required services for medically needy individuals are dictated by Section 440.220, which, in turn, make optional the surgical services of Section 440.10. See 42 C.F.R. § 440.220(a)(4) (giving the state a set of services it might choose from, including inpatient services, if certain other conditions hold). The Department represents that surgery is not a required service in this context, and hence the diagnosis discrimination prohibition of “subsection [440.230](c) . . . does not apply,” Blue Br. 29 n.3. The record before us does not suggest otherwise. Absent a further showing from Smith, then, we cannot rely on Pinneke or the diagnosis discrimination

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regulation, nor can we conclude at this stage, as the district court did, that diagnosis discrimination in this context violates the regulation. 2. Reasonableness of the Regulation As our precedent is not dispositive, we next examine the reasonableness of the regulation. We first consider problems that the regulation might raise, balanced against the Department’s justifications. (a) objections to the challenged regulation. The specific prohibition on diagnosis discrimination in 42 C.F.R. § 440.230(c) may not apply to Smith. However, that does not mean diagnosis discrimination as a general matter is irrelevant. The reasonableness requirements of Section 440.230(b) and the statute do apply. And diagnosis discrimination is relevant to that analysis. The Department does not prohibit coverage for all cosmetic procedures nor does it prohibit coverage for analogous procedures when GID is not the diagnosis at issue. The Department covers cosmetic procedures, including congenital anomaly corrective surgery; reconstructive surgery, “following an accidental injury;” scar removal, “resulting from neoplastic surgery;” and breast reduction, even if those surgeries are primarily for the treatment of psychological conditions. 441 Iowa Admin. Code r. 78.1(4). Further, phalloplasties are permitted in cases involving testicular cancer, pain, and torsion; post-oncologic reconstruction; post-traumatic reconstruction; post-infection reconstruction; and reconstruction of congenital defects or anomalies. These procedures are prohibited only in certain cases involving, inter alia, “transsexualism” and “gender identity disorders.” Id. The reasonableness of the exclusion regulation must be established, therefore, as a prohibition that targets transsexual individuals. Agency action may be arbitrary and unreasonable on evidentiary or procedural grounds – for example, when the agency does not follow proper notice and comment procedures or when the agency fails to collect evidence in determining what to do. In such circumstances, one might surmise that agency caprice, oversight, or indolence was the cause of the defect. In other circumstances, however, other factors might cause an agency to act inappropriately. For example, the agency action might be “colored by improper motivation” or “tinged with racial or religious factors;” such action would be unreasonable, not because it was random or capricious, but because it specifically – and indeed, nonrandomly – targets a certain group. Raoul Berger, Administrative Arbitrariness and Judicial Review, 65 Colum. L. Rev. 55, 82–83

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(1965). Such discrimination offends an administrative or statutory reasonableness standard, quite apart from its implications for “other constitutional guarantees” that might apply. Id. In all these scenarios, an agency might acquit its actions by showing evidence that its action was based on deliberation rather than whimsy or discrimination, and that it followed proper procedural steps. By prohibiting access to a set of procedures only where transsexual individuals are concerned, the exclusion regulation facially discriminates based on sex. Whatever other procedural or evidentiary issues the exclusion raises, the Department must justify this facial discrimination in order to satisfy the federal statutory reasonableness requirement. At the outset, we note that we do not come to this conclusion because “transsexualism” equates to “sex” as a lexicological matter – a conclusion that the law of this circuit would, in any case, prohibit. Sommers v. Budget Mktg., Inc., 667 F.2d 748, 749 (8th Cir. 1982) (discrimination based on “sex” under Title VII does not equate to discrimination based on “transsexualism” because the latter has a different meaning). Rather, discrimination based on transsexualism constitutes sex discrimination in two other ways. First, in presenting hurdles for those, such as Petitioner, who seek to transition from female to male, the exclusion regulation does double work: It facially discriminates against men and women. It allows phalloplasties on individuals born as men, who have experienced various kinds of trauma. However, it forbids similar – in some cases, identical – procedures for individuals born as women. Similarly, it allows breast reduction surgeries and mastectomies for individuals who identify as female, but it forbids the same procedures for individuals who identify as – and in many cases, that the law identifies as – men. Imposing analogous hurdles on individuals transitioning to female also discriminates on the basis of sex. The regulation allows breast reconstruction for those born female but not for those born male. Indeed, that the exclusion regulation discriminates based on sex is clear from another analogy. Imagine a law that offered benefits on equal bases to Jews and Catholics. However, it denied benefits to individuals who had converted from Catholicism to Judaism. No one would deny that this law discriminates based on religion. So, too, here: Discriminating against an individual for choosing a different gender from the one they were assigned at birth constitutes invidious discrimination based on sex. It is possible to argue that transsexuals have access to the same treatments as non-transsexuals on the same terms. That is to say, Medicaid will pay for a mastectomy for either a cisgender female or a transgender male if they have

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been diagnosed with breast cancer. However, it will not pay for such procedures for either individual for cosmetic reasons. Such a response is problematic. Take the analogy above further. Imagine a school made facilities available to groups for prayer and worship services in general. However, the school refused to make facilities available if the worship services involved religious conversion. That too would appear to violate proscriptions on religious discrimination. In addition to discriminating on the basis of sex assigned at birth, the exclusion regulation discriminates based on sex in a second way, by promoting gender stereotypes. In Loving v. Virginia, 388 U.S. 1 (1967), the state argued that white and African American individuals could access marriage on equal terms – that is, they could both only marry someone of their race. The Court, however, struck down the law because it extrapolated from its operation that it was a “measure designed to maintain White Supremacy.” Id. at 11. The Court drew this conclusion even though the prohibition in that case did not, on its face, offer that as its goal. Our concern with the exclusion regulation is that it similarly seems designed to promote gender stereotypes. How else to explain a policy that allows payment for a mastectomy when it involves cancer but not when it involves a medically serious condition, such as gender identity disorder? The regulation, on its face, discriminates against a particular subset of biological women – those who do not conform to stereotypes by living their lives, both biologically and otherwise, as women. Disparaging the surgery as “cosmetic,” even though most medical authority agrees that, at least in some cases, it clearly serves valuable medical purposes, underscores the Department’s hostility to a certain group of gender-nonconforming Medicaid recipients. Finally, we know that state regulation designed to promote gender stereotyping constitutes sex discrimination. In Price Waterhouse v. Hopkins, the US Supreme Court explained “we are beyond the day when an employer could evaluate employees by assuming or insisting that they matched the stereotype associated with their group.” 490 U.S. 228, 256 (1989). Since then, it has become clear that “[n]obody should be forced into a predetermined role on account of sex,” or punished for failing to conform to prescriptive expectations of what behavior is appropriate for one’s gender. See Ruth Bader Ginsburg, Gender and the Constitution, 44 U. Cin. L. Rev. 1, 1 (1975); see also Bibby v. Phila. Coca Cola Bottling Co., 260 F.3d 257, 262–263 (3d Cir.2001) (sex discrimination occurs when a “harasser’s conduct was motivated by a belief that the victim did not conform to the stereotypes of his or her gender”); Doe v. Belleville, 119 F.3d 563, 580–581 (7th Cir. 1997),

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vacated and remanded on other grounds, 523 U.S. 1001 (1998) (holding that “Title VII does not permit an employee to be treated adversely because his or her appearance or conduct does not conform to stereotypical gender roles” and explaining that “a man who is harassed because his voice is soft, his physique is slight, his hair long, or because in some other respect he exhibits his masculinity in a way that does not meet his coworkers’ idea of how men are to appear and behave, is harassed ‘because of his sex’”). Sommers does not engage with any of these arguments. To the extent our holding in Sommers precludes this analysis, it has been undermined by the Court’s holding in Price Waterhouse. See also Quick v. Donaldson Co., 90 F.3d 1372, 1382 (8th Cir. 1996) (repudiating Sommers’ “claim that it is ‘generally recognized that the major thrust of the ‘sex’ amendment was toward providing equal opportunities for women.’”) (citation omitted). To be sure, in challenging the reasonableness of the exclusion regulation, Smith does not frame his objection here specifically as involving discrimination based on sex. Rather, the district court and Smith limit their concerns to diagnosis discrimination. See, for example, Red Br. 42 (“[T]he regulation at issue allows coverage of plastic or reconstructive surgery sought by Mr. Smith under some circumstances (e.g., a mastectomy for breast cancer or reconstructive surgery after a car accident) but not for individuals seeking this form of treatment as sex reassignment surgery.”). At the same time, “[w]hen an issue or claim is properly before the court, the court is not limited to the particular legal theories advanced by the parties, but rather retains the independent power to identify and apply the proper construction of governing law.” U.S. Nat’l Bank of Or. v. Indep. Ins. Agents of Am., Inc., 508 U.S. 439, 446–447 (1993) (citations omitted). In noting that anti-transsexual diagnosis discrimination facially discriminates against transsexuals, we continue to limit ourselves to the issue with which the court is presented – whether the regulation at issue is reasonable under the Medicaid program. Extrapolating that sex discrimination violates this reasonableness requirement is hardly groundbreaking. Not only are those sex discrimination arguments routinely made in cases involving anti-transsexual discrimination, including, for nearly two decades, in this circuit, see Sommers, 667 F.2d 748, but diagnosis discrimination, as we outlined above, inexorably implicates sex discrimination. See Ulane v. E. Airlines, Inc., 742 F.2d 1081, 1085, 1086 (7th Cir. 1984); Holloway v. Arthur Andersen & Co., 566 F.2d 659, 661–663 (9th Cir. 1977); Dobre v. Nat’l R.R. Passenger Corp., 850 F. Supp. 284 (E.D. Pa. 1993); Cox v. Denny’s Inc., 1999 WL 1317785 (M.D. Fla. Dec. 22, 1999);

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Underwood v. Archer Mgmt. Servs., Inc., 857 F. Supp. 96, 98 (D.D.C. 1994); Doe v. U.S. Postal Serv., 1985 WL 9446, *2 (D.D.C. 1985). Indeed, just last year, the First and the Ninth Circuits recognized that antitranssexual discrimination constituted sex discrimination. See Rosa v. Park West Bank & Trust Co., 214 F.3d 213, 215 (2000) (concluding a transsexual plaintiff could state a claim for sex discrimination under Equal Credit Opportunity Act by analogizing to Title VII); Schwenk v. Hartford, 204 F.3d 1187, 1201–1202 (9th Cir. 2000) (relying on Title VII case law to conclude that violence against a transsexual person was violence because of gender under the Gender Motivated Violence Act). Without diagnosis discrimination, there would be no sex discrimination. Not only has the Department had the opportunity to brief and defend the issue of diagnosis discrimination, but it has taken that opportunity to do so at length. Given the well-developed arguments defining anti-transsexual discrimination as sex discrimination, we do not believe that the Department is prejudiced by our analysis. Finally, and frankly, most importantly, our extended analysis here appears merited by the whack-a-mole nature of the Department’s approach to this matter. In 1980, in Pinneke, we held that the Department’s ban on surgery pursuant to a GID diagnosis violated federal Medicaid law. The Department purported to comply with our order. A decade later, however, in 1990, it once more refused to cover a gender confirmation surgery as Pinneke required. It claims that this denial was in “error” because it had not properly amended its regulations in Pinneke’s wake. Grey Br. 37. It then proceeded with a rulemaking that reinstituted the ban – and, a decade later, we find ourselves called upon to examine the issue once more. We believe that offering a complete treatment of this matter is the best way to avoid such repeat behavior. Our holding that the exclusion regulation discriminates based on sex does not automatically render it unreasonable. With sufficient evidence, the Department may justify its discrimination as being “reasonable” as required by the statute. It is to the evidence it has collected and the process by which it has collected the evidence that we now turn. (b) justifications for the regulation. In Pinneke, we went on to consider the evidence that the Department offered to justify its exclusion. We noted that as far as the record was concerned, “the only successful treatment known to medical science is sex conversion surgery.” 623 F.2d at 549. We then faulted the Department for effectively prohibiting surgery pursuant to a GID diagnosis “[w]ithout any formal rulemaking proceedings

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or hearings.” Id. at 549. This, we explained, “reflects inadequate solicitude for the applicant’s diagnosed condition, the treatment prescribed by the applicant’s physicians, and the accumulated knowledge of the medical community.” Id. at 550. This approach undermined the requirement that “medical judgments . . . play a primary role in the determination of medical necessity.” Id. We note that the exclusion rule at issue in this case has been subject to the rulemaking process based on the IFMC report commissioned by the Department. However, as our analysis above suggests, absent further justification, the exclusion regulation is invalid as an unreasonable form of sex discrimination. The district court faulted the Department’s process at two stages. First, it held that the report was improperly produced. The registered nurse who prepared the report, “conducted a literature review and contacted various private insurance entities, some state Medicaid programs, the National Institute of Mental Health, the University of Minnesota School of Medicine’s Program in Human Sexuality, and the Harry Benjamin International Gender Dysphoria Association for information.” Smith, 57 F. Supp. 2d at 757. The report concluded as a result of these conversations that there was no consensus on the best way to treat GID. However, the report did not specifically identify what information each source provided nor who exactly had provided the information. Id. at 759. Further, the report was reviewed by generalist medical providers, including surgeons, but no mental health providers or providers that specialized in gender identity related issues. IFMC admitted that the literature revealed that that the procedure was not considered experimental and that the surgery may be medically necessary for some people. However, because of a lack of consensus on definition, diagnosis, and treatment and post-Pinneke research that indicated that hormone treatments, psychotherapy, and situational treatment may be more appropriate, and at times more effective, than surgery, IFMC ultimately recommended that the surgery not be covered. We agree with the district court that the report was short on academic rigor but that, by itself, does not invalidate its import. There is no indication that IFMC – an independent PRO – was biased in favor of any particular conclusion that the Department preferred. Nor is there evidence that the report’s conclusion itself – that there was disagreement in the medical community about the efficacy of the surgery – was wrong. On the other hand, we share the district court’s concerns about the lack of qualified personnel to review the report. We do not demand that panels of specialists and subspecialists buttress agencies’ conclusions in order to make Medicaid coverage determinations. However, in this case, the reviewers of the

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report lacked training in even the general field relevant to the diagnosis. While the treatment at issue here is surgical, the underlying diagnosis concerns mental health – but no mental health professionals reviewed the report. We have the same concerns as the district court about “evaluation of the appropriateness of particular treatments for psychiatric disorders by family physicians, general surgeons, and general internists, just as [we] would have grave concerns about psychiatrists evaluating the efficacy of certain obstetric procedures or cancer treatments.” Smith, 57 F. Supp. 2d at 759. Further, like the district court, we note a mismatch between the report’s conclusions and the rule the Department ultimately promulgated. The court notes: “IFMC was asked to examine whether sex reassignment surgery was considered the only effective treatment for gender identity disorder.” Id. Unsurprisingly, given the paucity of available evidence, IFMC found disagreement. However, “IFMC was not asked the objective question, ‘What are the effective treatments of gender identity disorder and when is each such treatment appropriate?’” Id. Further, the report noted that the surgery is sometimes appropriate, “that the effectiveness of various treatments should be considered as part of a multi-stage process that may or may not culminate in sex reassignment surgery; and that care should be used in the selection of candidates for final sex reassignment surgery.” Id. The report recognized disagreement, although it recognized the importance of surgery in some circumstances; the rule creates a blanket ban on coverage of gender reassignment surgery. To conclude merely from disagreement that a ban would be appropriate in all circumstances is, we agree, a leap. Indeed, if anything, the evidence at trial – which would have been unearthed through any competent investigation – suggests that while there is disagreement, the Department adopted the view held by the minority of experts in this field. The Department objects that the report was followed by a formal survey of sister Medicaid agencies, which showed that most agencies do not cover the procedure. But this survey does not cure the report’s deficiencies. The Department did not pay for the procedure until we required its coverage in Pinneke and, the record suggests, sought to ignore this court’s decision in subsequent cases. There is no reason to believe that other Medicaid agencies have behaved with a greater degree of circumspection than Iowa’s. Finally, while the Department’s notice and comment procedures yielded only one comment in opposition, it is notable that it received no comments in support – all this shows is that a limited number of individuals have interest or expertise in the matter. The relevance of the report increases, rather than decreases in such circumstances.

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iv About two decades ago, we invalidated the Department’s refusal to provide coverage for surgery pursuant to a GID diagnosis. Ten years ago, notwithstanding our prior decision, the Department once more issued a refusal to provide coverage. We hope that today’s decision proves a decisive point in what appears to have become a decennial ritual. Affirmed.

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11 Commentary on Burton v. State greer donley

background In Burton v. State,1 Samantha Burton appealed a Florida trial court’s Order Authorizing Medical Treatment that compelled her to submit to any “medical care and treatment” that her treating physician believed was “necessary to preserve the life and health of [Ms. Burton’s] unborn child.”2 This included “restricting Samantha Burton to bed rest, administering appropriate medication, postponing labor, taking appropriate steps to prevent and/or treat infection, and/or eventually performing a caesarian section delivery of the child at the appropriate time.”3 The order also denied Ms. Burton’s request to seek care from a different provider as it was “not in the child’s best interest at this time.”4 The order was not time-limited and was expected to stay in place until after her child was born.5 As Nadia Sawicki, writing as Judge Sawicki, notes in her concurrence, it is very difficult to choose a neutral word to refer to the subject of Ms. Burton’s pregnancy. In the context of an unwanted pregnancy, especially if that pregnancy is terminated, reproductive rights advocates unequivocally use the word “fetus.” But I am assuming Ms. Burton’s pregnancy was desired – or, at least, we have no reason to think the pregnancy was unwanted. In desired pregnancies, women often see their fetus as a baby, and in the case of stillbirth, mourn the baby’s death as that of a child. For that reason, I avoid the term “fetus” as much as possible, which to me suggests a maternal-fetal conflict that I don’t

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49 So. 3d 263 (Fla. Dist. Ct. App. 2010). Order Authorizing Medical Treatment at 2, No. 2009CA1167 [Hereinafter Order]. Id. at 3. Id. Id. at 2–3.

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believe exists here. However, I respect the rationale behind Sawicki’s terminology, and agree that regardless of the chosen term, the word is loaded.6 As Sawicki’s rewritten concurrence highlights, Ms. Burton’s story is completely absent from both the trial court’s order and the appellate court’s opinion. This omission is reprehensible. Though our information is limited, we know that at twenty-five weeks pregnant, Ms. Burton started experiencing complications: Her waters broke and contractions began.7 It is worth noting the seriousness of this complication at twenty-five weeks into a pregnancy. A twenty-five-week-old fetus is at the “limit of viability.”8 At this gestational age, following premature rupture of membranes, roughly half of these extremely premature babies (56%) would die in utero, during labor, or in the hospital before discharge.9 Though the survival statistics have improved over the past decade, these statistics should reflect the general state of medicine at the time of Ms. Burton’s diagnosis.10 The lucky babies that survived typically required an average of three and a half months in the Neonatal Intensive Care Unit (NICU).11 And at least a quarter of the surviving children would have experienced serious disability throughout their lives, including cerebral palsy, blindness, profound hearing loss, or serious intellectual and developmental delays.12 When you combine disability and mortality statistics at the time, only 23% of babies born alive at twenty-five weeks would have been alive without a significant disability at thirty months old.13 Though additional weeks in the womb would have offered the child a better prognosis, frequently labor cannot be stopped for more than a few days. 6

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See Greer Donley, Parental Autonomy over Prenatal End-of-Life Decisions, 105 Minn. L. Rev. 175, 176 n. 3, (2020). Id. at 2; Brief of Petitioner-Appellant at 1, Burton v. State, 49 So. 3d 263 (Fla. Dist. Ct. App. 2010) [Hereinafter Burton Br.]; Brief of Respondent-Appellee at 1, Burton v. State, 49 So. 3d 263 (Fla. Dist. Ct. App. 2010) [Hereinafter State Brief]. American College of Obstetrics & Gynecologists, Obstetric Care Consensus Number 6 (2017), www.acog.org/-/media/Obstetric-Care-Consensus-Series/occ006.pdf?dmc= 1&ts=20180129T0128313960. See Nicholas S. Wood et al., Neurologic and Developmental Disability after Extremely Preterm Birth, 343 New Eng. J. Med. 378, 379 (2000). Survival rates are influenced by the quality of care and available technology at the relevant time. This source is a good approximation for 2009. More recent estimates suggest higher survival rates, but they still show that a quarter to a third of babies born before twenty-six weeks will not survive. American College of Obstetrics & Gynecologists, supra note 8, at e188. Sarah E. Seaton et al., Estimating Neonatal Length of Stay for Babies Born Very Preterm, 104 Archives Disease in Childhood – Fetal & Neonatal Ed. F182, F184 (2019) (referring explicitly to “[b]abies born at 24 and 25 weeks of gestational age who survive to discharge”). American College of Obstetrics & Gynecologists, supra note 8, at e188. Wood et al., supra note 9, at 379.

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Bed rest, for instance, is now believed to be ineffective at helping almost all pregnancy complications.14 And even for women like Ms. Burton with preterm premature rupture of membranes (PPROM), there is no evidence that bed rest improves maternal or fetal outcomes or significantly delays labor.15 Unfortunately, the median latency period from rupture to birth before twentysix weeks is only four to eight days.16 Later in the pregnancy, latency to birth can be extended to almost two weeks with active management.17 One reason for this is that once the membranes have ruptured, doctors must balance the desire to delay labor with the risk of infection that can severely harm both the mother and her child.18 The longer delivery is delayed, the higher the risk of infection, and thus, the higher the risk of maternal morbidity and mortality.19 In other words, once Ms. Burton’s waters broke at twenty-five weeks, there was no simple solution to save Ms. Burton’s child, and aggressive intervention risked her health. Ms. Burton’s child faced a dire prognosis no matter how aggressively the doctors treated her. When serious health complications arise in a desired pregnancy, women are faced with some of the most difficult decisions of their lives. In these tragic situations, doctors should strive to support patient autonomy, not create additional trauma by stripping patients of their rights. The American College of Obstetrics & Gynecology (ACOG), for instance, has long urged doctors to “present the option of nonintervention” as a reasonable choice before twenty-six weeks.20 And after adequate counseling, doctors should respect whatever choice is made. Accordingly, the American Academy of Pediatrics has said: “Counseling may result in the 14

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See, e.g., Bed Rest during Pregnancy: Get the Facts, Mayo Clinic (Mar. 31, 2017), www .mayoclinic.org/healthy-lifestyle/pregnancy-week-by-week/in-depth/pregnancy/art-20048007 (“Bed rest during pregnancy is no longer recommended for most conditions.”). See, e.g., Catherine Bigelow et al., 780: Pilot Randomized Clinical Trial to Evaluate the Impact of Bed Rest on Maternal and Fetal Outcomes in Women with Preterm Premature Rupture of Membranes (PPROM), 212 Am. J. Obstetrics & Gynecology S378 (2015). See Julie E. Robertson et al., Fetal, Infant and Maternal Outcomes among Women with Prolapsed Membranes Admitted before 29 Weeks Gestation, 11 Plos One 1, 4 (2016). Mara J. Dinsmoor, Outcomes after Expectant Management of Extremely Preterm Premature Rupture of The Membranes, 190 Am. J. Obstetrics and Gynecology 183 (2004). Id. at 31 (highlighting the two goals of PPROM management, “reducing fetal immaturity at birth and avoiding chorioamnionitis,” and noting that “[e]xtension of the latency [to birth] period nonetheless exposes the fetus to complications”). American College of Obstetrics & Gynecologists, supra note 8, at e191 (“Maternal morbidity and mortality may arise not just with interventions surrounding previable pregnancy management but also with decisions not to intervene,” including delaying delivery after PPROM.). American College of Obstetrics & Gynecologists, Periviable Birth: Interim Update, 215 Am. J. Obstetrics & Gynecology B2, B6 (2016).

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family choosing not to have active intervention for the delivery and care of the infant. Because the relative benefits of different types of obstetric management are not always known, families should be supported in these often difficult and sometimes controversial decisions.”21 It is with this background in mind that we review what is known of Ms. Burton’s story. After voluntarily presenting at Tallahassee Memorial Hospital, Ms. Burton was examined by Dr. Bures-Forsthoefel.22 Though the record does not reflect it, we must assume that as part of the informed consent process, Dr. Bures-Forsthoefel explained the seriousness of her situation before recommending that Ms. Burton remain on bed rest at the hospital and immediately quit smoking to give her child the best (albeit not promising) chance at life.23 Forced bed rest at the hospital would have required Ms. Burton to miss work at her two jobs24 and be separated from her two young children for the duration of her pregnancy – potentially months – which she reasonably found unacceptable.25 As a rational and competent adult, Ms. Burton refused to follow Dr. Bures-Forsthoefel’s orders and asked to be discharged.26 Instead of allowing Ms. Burton to leave, the hospital involved the state attorney general’s office, which chose to use its discretionary power to intervene in this private medical decision.27 After litigation ensued, Ms. Burton requested transfer to another hospital, in all likelihood to obtain a second opinion from other doctors. Of course, many responsible mothers would seek a second opinion for such an important medical decision – the life and health of her child and herself were on the line. Yet the court denied this request, and Ms. Burton’s rights with it, under the false assumption that “a change is not in the child’s best interest at the time.”28 Instead, the court compelled Ms. Burton to submit to any treatment Dr. Bures-Forsthoefel recommended “to preserve the life and health of [her]

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Hugh MacDonald, Perinatal Care at the Threshold of Viability, 110 Pediatrics 1024, 1025–1026 (2002). Burton Brief at 1. Id. at 1; State Brief at 1. Though not reflected in the briefs, others have commented about Burton’s employment. Howard Minkoff & Anne Drapkin Lyerly, Samantha Burton and the Rights of Pregnant Women Twenty Years after In re A.C., 40 Hastings Center Report 13, 13 (2010). Burton Brief at 2; Brief for ACLU at 7, Burton v. State, 49 So. 3d 263 (Fla. Dist. Ct. App. 2010) [Hereinafter ACLU Brief]. Burton Brief at 1; State Brief at 1. State Brief at 19–20 (quoting In re Dubreuil, 629 So.2d 819, 824 [Fla. 1993]) (describing the circumstances in which the state can intervene). Order at 3.

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unborn child,” entirely ignoring Ms. Burton’s interests in making informed, autonomous medical decisions.29 The result was that Ms. Burton was forced to follow medical recommendations that we know in retrospect were both ineffective and outside of the standard of care. The treating physician may not have had the benefit of research that would later come to light, but that is precisely why doctors should defer to the patient’s choice when the evidence regarding two possible courses of treatment is equivocal. Ms. Burton was stripped of her right to make health care decisions for herself and end-of-life decisions for her child. A second medical opinion could have revealed Dr. Bures-Forsthoefel’s errors and biases. But more importantly, it would have allowed Ms. Burton to exercise autonomy over her medical decisions amidst a devastating situation. Unfortunately, this terrible story has a worse ending. After days of forced treatment, confinement, and separation from her two living children, “doctors performed an emergency cesarean section on Ms. Burton and discovered that her fetus had already died in utero.”30 In other words, the deprivation of Ms. Burton’s right to bodily autonomy did not protect her child, and Ms. Burton was still left a grieving mother of a stillborn baby. This reality is shockingly absent from the case history, which remarkably paints Ms. Burton as the villain, not the victim, of a profound loss. Without question, the loss of her child was compounded by the trauma of compelled, futile medical treatment. Once the trial court learned that Ms. Burton was no longer pregnant, it lifted the Order Authorizing Medical Treatment.31 Nevertheless, Ms. Burton bravely appealed the trial court’s prior order even though it had dissolved. And she won. All three appellate judges agreed that the district court had incorrectly applied the best interest of the child standard in evaluating the state’s infringement of Ms. Burton’s rights32 (although one of them would have dismissed the appeal on mootness grounds).33

original opinion The first issue before the appellate court was mootness. Judge Clark, writing for the court, held that the case was not moot because the issue was “capable of repetition yet evading review.”34 The court next examined the substantive 29 30 31 32 33 34

Burton Brief at 1. ACLU Brief at 2. Burton Brief at 2; State Brief at 2. Burton v. State, 49 So. 3d 263 (Fla. Dist. Ct. App. 2010). Id. (Berger, J. dissenting). Id. at 264 (citing, inter alia, Roe v. Wade, 410 U.S. 113 (1973)).

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issue of whether the trial court had applied the correct legal standard in evaluating whether to compel medical treatment on a competent adult. Judge Clark found that the standard applied by the trial court – best interest of the child – was incorrect.35 The court rightly noted that the best interest of the child standard applies only when the state seeks to compel treatment for living children over the objections of parents.36 It does not, however, apply when the state seeks to compel treatment for developing fetuses over a mother’s objection, which necessarily infringes on her right to privacy and bodily autonomy.37 Instead, the court held that the proper test for evaluating compelled treatment in pregnancy has three parts. First, the trial court must make a finding of fetal viability: “Only after the threshold determination of viability has been made may the court weigh the state’s compelling interest to preserve the life of the fetus against the patient’s fundamental constitutional right to refuse medical treatment.”38 Second, if the fetus is viable, the trial court must determine whether the “compelling state interest is sufficient to override the pregnant woman’s constitutional right to protect her person, including her right to refuse medical treatment.”39 Third and finally, “the state must then show that the method for pursuing that compelling state interest is ‘narrowly tailored in the least intrusive manner possible to safeguard the rights of the individual.’”40 Judge Van Nortwick agreed with Judge Clark’s opinion but wrote a separate concurrence to add that he also believed Ms. Burton’s Sixth Amendment right to appointed counsel was violated.41 Even though this case involved a civil, not criminal, proceeding, Judge Van Nortwick relied on the US Supreme Court’s precedent finding that “an indigent litigant has a right to appointed counsel only when, if [s]he loses, [s]he may be deprived of [her] physical liberty.”42 His concurrence argued that Ms. Burton was entitled to representation by counsel before being “involuntarily admitted to the hospital and, ultimately, required to undergo a caesarian section against her will.”43 Finally, in dissent, Judge 35 36 37 38

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Id. at 265. Id. at 266. Id. Id. According to this standard, before viability, a court cannot compel treatment to benefit the fetus because the pregnant woman’s interests will outweigh those of the fetus. Id. Id. (quoting In re Guardianship of Browning, 568 So.2d 4 [Fla.1990]). Id. (Van Nortwick, J., concurring) (quoting Lassiter v. Dep’t of Soc. Servs., 452 U.S. 18, 26–27 [1981]). Id. Id. at 267.

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Berger concluded that even though “the trial judge applied the wrong legal standard,” the case was moot and therefore should have been dismissed.44 This appellate decision was a victory. And because of that, it would be easy to conclude that the case should not be included in this volume. But Sawicki’s concurrence perfectly highlights the omissions that speak loudly even in cases where women successfully assert their rights – the exclusion of women’s stories, the undervaluing of their interests, the creation or exaggeration of fetal-maternal conflicts, and the failure to recognize the impact of gender bias. I explore below how Sawicki’s concurrence fills in these gaps and models how judges can better promote the feminist ideal of autonomy.

feminist judgment The main contribution of Sawicki’s concurrence is to highlight the various evidentiary failures of the trial court. This addition is vital. The record lacks any evidence corroborating Dr. Bures-Forsthoefel’s assertion that the compelled treatment would help Ms. Burton’s child; it also fails entirely to consider evidence regarding Ms. Burton’s reasons for refusal or whether the compelled treatment would be non-invasive or pose low risks to her. Instead, the trial court accepted as fact the medical opinion of one doctor and seemed to ignore Ms. Burton completely. Though the original appellate opinion corrected the trial court’s legal errors, it failed to discuss these important factual omissions or consider whether the trial court’s findings were sufficiently supported by competent, substantial evidence.

Lack of Evidence that the Compelled Treatment Would Benefit Ms. Burton’s Child First, Sawicki’s concurrence notes that there is no evidence or testimony corroborating Dr. Bures-Forsthoefel’s medical opinion that bed rest and other medical interventions were in the best interests of Ms. Burton’s child. This is troubling for many reasons. For one, medical advice is inherently fallible, especially without the benefit of multiple opinions. This fallibility is one of the many reasons that patients – or patients’ parents, in the case of minors – are the ultimate decision-makers for their health care. Sawicki explains in her concurrence that nearly a third of court-ordered interventions against pregnant women are futile or harmful in retrospect. This case falls within that 44

Id. at 267–268.

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category. Dr. Bures-Forsthoefel ordered inpatient bed rest at great personal cost to Ms. Burton even though it is ineffective at treating PPROM, from which Ms. Burton suffered, and which is associated with serious medical risks.45 Dr. Bures-Forsthoefel also performed a cesarean section without Ms. Burton’s consent for a child that had already died in utero, further jeopardizing Ms. Burton’s health and future fertility by forcing her to undergo a riskier alternative to vaginal delivery with no corresponding benefit to her child.46 As the medical literature suggested, Dr. Bures-Forsthoefel’s aggressive and rightsdepriving approach was not guaranteed (or even more likely than not) to save Ms. Burton’s child. Without question, Ms. Burton could have opted to pursue this course of treatment had she desired, but it is outrageous that she was forced to receive risky and futile care against her will. Had the court required any corroborating evidence or permitted Ms. Burton to pursue a second medical opinion, it would have realized that the accepted medical standard of care in this situation is deference to bodily autonomy and parental choice and that Dr. Bures-Forsthoefel’s recommendations were likely grounded in an ideological objection to Ms. Burton’s decision. Doctors who oppose abortion can bring their belief that fetal life should be protected at all costs into their medical judgments even outside of the abortion context.47 And these ideologies can threaten women’s health, as Ms. Burton’s case clearly demonstrates. It is worth noting that the trial court’s Order Authorizing Medical Treatment may not have been justified even under the best interest of the child standard that the court incorrectly utilized. Under common law and the US Constitution, parents are given broad authority to make health care decisions for their children.48 These parental rights can be overridden in certain cases where the parental choice is clearly against the child’s best interest – for instance, if parents refuse a lifesaving blood transfusion for their child on religious grounds.49 But when there is no obviously correct

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See supra notes 11–12. ACLU Brief at 2. Jeffrey Blustein & Alan R. Fleischman, The Pro-Life Maternal-Fetal Medicine Physician: A Problem of Integrity, 25 Hastings Ctr. Rep. 22, 23–24 (1995) (“a pro-life physician may support interventions to protect the fetus that a pro-choice physician would oppose.”). See, e.g., Prince v. Massachusetts, 321 U.S. 158, 166 (1994) (“It is cardinal with us that the custody, care and nurture of the child reside first in the parents, whose primary function and freedom include preparation for obligations the state can neither supply nor hinder.”). See, e.g., Newmark v. Williams, 588 A.2d 1108, 1115, 1115–1117 (Del. 1991).

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medical decision to be made for the child, courts often defer to parental choice even if it involves refusing medical care that might be beneficial.50 For instance, in Newmark v. Williams, the Supreme Court of Delaware allowed parents to refuse treatment for their child with cancer because even with aggressive medical treatment, the child only had a 40% chance of survival and the treatment would have caused intense suffering.51 Ms. Burton’s child faced similar odds. Thus, even under this lower standard, the trial court may have erred in ordering treatment over Ms. Burton’s objection, rather than allowing her to make end-of-life decisions for her child as she saw fit.

Lack of Evidence that the Compelled Treatment Would Not Harm Ms. Burton Second, Sawicki’s concurrence points out that there is no evidence in the record about how this treatment would have affected Ms. Burton – the actual recipient of the treatment. Though this evidence is always essential, it is especially important to consider it here given the possibility that any coerced care would have been futile for her child. Can the state ever prove that the fetus’s interests outweigh the mother’s – the second part of the court’s test – when the child is more likely than not to die regardless of the care she or he receives? As Sawicki notes, bed rest and cesarean sections carry serious risks, including muscle and weight loss, bone turnover, depression, anxiety, infection, hemorrhage, and death. Here, the risks benefited neither Ms. Burton nor her child. But even if competent medical evidence had shown that bed rest or surgical delivery had been in the child’s best interest, a pregnant woman’s medical interests must be considered alongside her child’s. After all, it is only when the treatment “poses an insignificant or no health risk to the woman . . . and would clearly prevent substantial and irreversible harm to her fetus” that compelled medical treatment should even be considered. By excluding all evidence of the risks to Ms. Burton, the trial court dehumanized her and rendered her nothing more than a vessel.52

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See, e.g., Newmark, 588 A.2d at 1119. (“No American court . . . has ever authorized the State to remove a child from the . . . care of his parents and subject him, over parental objection, to an invasive regimen of treatment which offered . . . only a forty percent chance of ‘survival.’”). Id. See, e.g., April L. Cherry, The Detention, Confinement, and Incarceration of Pregnant Women for the Benefit of Fetal Health, 16 Colum. J. Gender & L. 147, 148 (2007) (Noting that forced treatment “reduces pregnant women” to “fetal containers” and “maternal environments.”).

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Refusal to Consider Ms. Burton’s Non-Medical Interests Finally, Sawicki highlights that there is no evidence of Ms. Burton’s motives for refusing treatment. Excluding this evidence not only erases Ms. Burton, implicitly casting judgment on her choices without explaining them,53 but also makes it impossible to operationalize the narrow tailoring required in the third part of the court’s test – namely that the invasion be as minimally intrusive as possible. We know at a minimum that Ms. Burton had two children at home for whom she was responsible. Understandably, she did not want to be separated from them, especially for an indeterminate amount of time. Though the trial court painted Ms. Burton as a bad mother for refusing treatment that might save her baby,54 she was in all likelihood acting out of love and care for her two living children as any good mother would. The trial court paradoxically demanded that Ms. Burton entirely ignore the needs of her two living children but also be willing to sacrifice everything for her potential child. It would have been reasonable for Ms. Burton to prioritize the needs of her living children, especially given that the forced separation and bed rest were never likely to save her potential child. To the extent a court might have concluded that ordering bed rest was justified under the second part of the test, narrow tailoring might have required that Ms. Burton be allowed to stay on bed rest at home where she could be with her children.

discussion Sawicki’s concurrence clearly documents why trial courts should not rely on the testimony of one physician to compel treatment. It is not enough for appellate courts to correct a trial court’s inaccurate legal standards, they must also police whether lower courts are meeting a sufficiency of the evidence standard. The correct legal standard will do little to protect women in future situations if courts routinely defer to the opinion of one doctor who may greatly exaggerate the possible benefits to the child and undercount the risks to the woman.55 This disparate risk valuation is based on the assumption that women 53

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When the Court says, “Ms. Burton has exhibited behavior since her admission to TMH in contradiction to the health care providers’ instructions and recommendations,” it strongly implies that her actions are the result of negligent or even malicious mothering. Order at 2. In addition to the implicit assumptions throughout, the court also encouraged the hospital to notify the Florida Department of Children and Families about Ms. Burton’s “condition” so it could “monitor” her. Id. See, e.g., Nancy Ehrenreich, The Colonization of the Womb, 43 Duke L.J. 492, 562 (1993).

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should be self-sacrificing – that is that they should bear large risks even for a small chance of benefit for their child.56 “[I]n dismissing the risks to the mother, the doctor treats her needs as less important than those of her child. She is supposed to be willing to sacrifice her well-being – even to risk death – for the health of her fetus.”57 When women fail to abide by this assumption, women are often pegged as bad mothers in need of correction.58 But forcing women to be self-sacrificial is anomalous in the American legal tradition, where courts have historically opined that individuals have no legal obligation to save the lives of others.59 And of course, there is nothing inherently irrational or wrong about parents neutrally balancing competing risks between the mother and fetus or even prioritizing the health of the mother, who is a fully-formed person with unequivocal moral value. Doctors motivated by their antiabortion ideology frequently exaggerate fetal benefits and downplay maternal risks, and judges often accept their findings without question.60 Though courts often see doctors as “neutral arbiters,” Michelle Oberman has argued that doctors are often the ones generating the conflict.61 She suggests that the conflict is not between the woman and the fetus, but between the woman and her doctor.62 And by definition, the doctor cannot be an impartial party.63 Sawicki’s concurrence—had it been included with the original opinion – would have provided more protection to women under the care of overzealous doctors in Florida by urging trial courts to demand corroborating medical testimony and evidence before reaching their findings of fact. These evidentiary failures are problematic for their own sake but also for the stereotypes they promote. Nancy Ehrenreich has argued that when courts unquestioningly accept medical judgments “as ‘truth’ and reject[] alternative 56

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Id. at 563 (“The physician’s conclusory decision that the indeterminate risk of infection in the newborn outweighs the doubling in the risk of death to the mother . . . reveals an underlying assumption (perhaps unconscious) that women both are and should be self-sacrificing.”). Id. See e.g., id. at 565 (“This delegation [to doctors] is the final critical step in a process that, through medical and legal discourse, defines mothers as “good” or “bad” depending on whether or not they accept ‘medically necessary’ procedures.”). See Julie D. Cantor, Court-Ordered Care: A Complication of Pregnancy to Avoid, 366 New Eng. J. Med. 2237, 2240 (2012). Id. at 563; R. Alta Charo, Physicians and the (Woman’s) Body Politic, New Eng. J. Med. (2014) (calling it “a disturbing pattern of legislative and judicial misrepresentation and misuse of medical information in the pursuit of partisan aims focused on women and pregnancy”). Michelle Oberman, Mothers and Doctors’ Orders: Unmasking the Doctor’s Fiduciary Role in Maternal-Fetal Conflicts, 94 Nw. U. L. Rev. 451, 454 (2000). Id. Id.

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approaches as ridiculous,” they “draw the inevitable conclusion that women who resist doctors’ orders are irresponsible, hysterical, and/or dangerous.”64 Though law tends to defer to medicine as an objective truth, the history of birth “has highlighted the fact that medicine is a social construct.”65 Women should not be labeled as bad mothers simply for challenging the recommendations of a doctor – recommendations that may very well be wrong or not in accordance with their own values and preferences. Courts can fight this stereotype by forcing doctors to corroborate their recommendations instead of paternalistically assuming a doctor knows what is better for a woman and her child than the woman does. At the very least, courts should permit patients the small grace of a second opinion to demonstrate that their decision fits within a range of reasonable options. It is also possible that Ms. Burton’s refusal of care was at least partially related to her child’s poor prognosis. Even if that were the case, it would not make Ms. Burton a bad mother to the child inside of her. Many women find it more compassionate to save their potential child from suffering in this world than to force him or her to endure months of pain that might nevertheless end in death.66 Sometimes, “a blanket and an embrace is the highest quality care [mothers] can give [their] bab[ies].”67 The optimal response in this situation is not determined by objective medical facts alone but by the parents’ values. Joseph Goldstein has argued that: no one can be presumed to be in a better position, and thus better equipped, than a child’s parents to decide what course to pursue if the medical experts cannot agree or, assuming their agreement, if there is no general agreement in society that the outcome of treatment is clearly preferred to the outcome of no treatment.68

There is no “right” answer for Ms. Burton, which is why all relevant professional organizations recognize that parents are entitled to make the choice

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Ehrenreich, supra note 56, at 565. Id. at 543, 538 (“The notion that physicians are merely engaging in an objective medical assessment when they label certain mothers as bad is sustained by the invisibility of alternative ways of thinking about reproduction, women, and their bodies.”). See generally Greer Donley, Parental Autonomy Rights for Prenatal End-of-Life Decisions (Working Paper, 2019). Jen Gutner, I Didn’t Kill My Baby, N.Y. Times (Feb. 26, 2019), www.nytimes.com/2019/02/26/ opinion/born-alive-abortion.html (describing the loss of her son after her waters broke at twenty-two weeks). Joseph Goldstein, Medical Care for the Child at Risk: On State Supervention of Parental Autonomy, 86 Yale L.J. 645, 651 (1977).

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that they feel is best for their children.69 It might not have been the decision that Dr. Bures-Forsthoefel would make if she were unlucky enough to face the same experience, but she was never the relevant decision-maker. By ignoring Ms. Burton’s motives and interests entirely, the court erases her out of her own child’s death, as if Dr. Bures-Forsthoefel cared more about her child than she did. But only Ms. Burton, not the doctor or the judge, would have to deal with the anxiety of watching her child experience pain and fight for life. Only Ms. Burton would have to suffer for months while her child was in the NICU, not knowing if she would ever take her baby home. Only Ms. Burton would have to nurse the child if she or he survived with serious disabilities. And only Ms. Burton would ultimately mourn her child’s death. Other than her refusal to unquestionably accept Dr. Bures-Forsthoefel’s treatment plan – a decision that was medically correct in hindsight – there was no reason to suspect Ms. Burton was anything but a loving mother, despite being portrayed as the opposite. As Sawicki’s concurrence points out, the trial court made a common mistake: the false assumption that Ms. Burton’s interests conflicted with those of her child. While this is the dominate paradigm in the case of abortion, there is no reason to see the mother and child’s interests as conflicting in desired pregnancies. Parents want what is best for their children – in fact, the US Supreme Court has said there is a “presumption that fit parents act in their children’s best interests” – but parents may disagree with their doctors on what that is.70 There is nothing innately wrong with a person challenging their physician’s recommendations, seeking a second opinion, or pursing a different treatment plan. As discussed above, medical advice is fallible, and patients (not their doctors) are the only people who must live with the effects of their medical decisions. Ms. Burton did not agree with Dr. Bures-Forsthoefel’s advice. This wasn’t necessarily because of any conflict between her interests and the child’s interests, but because she decided that a different approach was in the best interest of herself and her child.71 It is anomalous that the trial court concluded that Dr. Bures-Forsthoelfel was more credibly acting in the potential child’s best interests than the potential child’s mother. Sawicki’s concurrence does an excellent job of demonstrating that these crucial omissions are not just mistakes, but the result of systemic

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See supra notes 16–17. Troxel v. Granville, 530 U.S. 57, 58 (2000) (internal quotations omitted). Ehrenreich, supra note 56, at 552–553 (“Rather than suggesting disregard for the well-being of one’s offspring, those refusals might instead suggest rejection of a demeaning vision of one’s self and one’s body and a claiming of one’s right to human dignity, respect, and autonomy.”).

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marginalization of women and gender bias in the courts. By highlighting the various ways that gender bias impacts women in the legal system, she calls on trial courts to recognize and correct their sexism. Sawicki’s arguments might not persuade the most ideological judges, but they would certainly provide helpful language to trial court judges who may be suspicious of physician recommendations or eager to correct mistakes of the past. Overall, Sawicki’s concurrence adds much needed feminist perspective and evidentiary bite to the Burton opinion by calling attention to the need to corroborate medical testimony and centering Ms. Burton’s lived experience and entitlement to bodily autonomy.

BURTON V. STATE, 49 SO. 3D 263 (FLA. DIST. CT. APP. 2010)

judge nadia sawicki, concurring in the judgment I concur with the majority that the trial court applied the incorrect legal rule when it ordered Ms. Burton’s continued hospitalization and involuntary medical treatment. Florida law is clear as to the legal standard for overriding a competent adult’s right to consent to or refuse medical treatment. The state must identify an interest compelling enough to override the patient’s right to medical self-determination. Moreover, it must demonstrate that the method by which it seeks to further that state interest is narrowly tailored and poses only a minimal intrusion upon the patient’s rights. However, in addition to holding that the trial court erred in identifying and applying the relevant legal standard, I would find that its order was not supported by competent and substantial evidence as required under Florida law. Teffeteller v. Dugger, 734 So.2d 1009 (Fla. 1999). Certainly, we must be mindful of the fact that a trial court’s findings of fact merit considerable deference on appellate review. In this case, however, reversal of the order is warranted because the evidentiary record is so sparse as to render the court’s conclusions unsupportable. I would reverse on these grounds as well. I write separately not only to explain why the trial court’s factual findings failed to satisfy Florida’s “competent and substantial evidence” standard, Teffeteller, 734 So. 2d at 1017, but also to highlight the degree to which the court’s error was grounded in – and further reinforces – troubling societal biases that devalue women’s voices. Women are entitled to equal protection under the law pursuant to the Fourteenth Amendment of the US Constitution. Seeking a political voice, women fought diligently to secure the right to vote under the Nineteenth

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Amendment. Yet, despite these formal guarantees of full participation in the political process, discriminatory attitudes about gender continue to influence how courts, government agencies, and health care providers respond to women’s narratives. As a result of deeply ingrained biases that privilege the male perspective, women and women’s voices are often rendered invisible – even where women’s rights themselves are the subject of legal dispute. These societal prejudices are very clearly reflected in the trial court order below, which summarily discounts Ms. Burton’s testimony as unpersuasive without considering any evidence of her opinions, her values, or her interests. Until the twenty-first century, men dominated institutions of power. Within the American legal system, the “institution’s primary participants historically were men – as judges, lawyers, and jurors.” Patricia Yancey Martin, John R. Reynolds & Shelley Keith, Gender Bias and Feminist Consciousness among Judges and Attorneys: A Standpoint Theory Analysis, 27 Signs 665, 666 (2002). Noted feminist legal scholar Catharine MacKinnon has argued that “male dominance is perhaps the most pervasive and tenacious system of power in history” in large part because the male perspective is understood as a universal and objective point of view. Catharine A. MacKinnon, Feminism, Marxism, Method, and the State: Toward Feminist Jurisprudence, 8 Signs 635, 638–639 (1983). MacKinnon cites the US Constitution as but one example of this phenomenon. She writes that women “had no voice in the constituting document of this state,” and posits that the men tasked with drafting this foundational document “may not have had the realities of [womens’] situation in mind.” Catharine A. MacKinnon, Feminism Unmodified: Discourses on Life and the Law 206 (1987). MacKinnon draws a stark contrast between our history of male-dominated jurisprudence and the methodology of feminist jurisprudence, which is grounded in the simple but radical principle of “believing women’s accounts.” Id. at 5. This concurring opinion is written in an effort to ensure that the record of this case includes some consideration of Ms. Burton’s account of her own experience. More importantly for future controversies, it urges judicial fact-finders to be more attentive to the ways in which their evaluation of evidence and their final judgments may be influenced by unconscious gender bias and by these harmful but deeply-embedded societal prejudices.

i standard of review For the reasons described below, I would find that Judge Hooper’s grant of the state’s petition to compel medical treatment without Ms. Burton’s consent was not supported by competent and substantial evidence and so should be

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reversed. Florida’s standard of review for judicial findings of fact is highly deferential. An appellate court is obligated to uphold a trial court’s judgment as long as that judgment is supported by “competent, substantial evidence.” Teffeteller, 734 So. 2d at 1017. The reasoning behind this rule was plainly explained by our Supreme Court in Shaw v. Shaw: [T]he function of the trial court is to evaluate and weigh the testimony and evidence based upon its observation of the bearing, demeanor and credibility of the witnesses appearing in the cause. It is not the function of the appellate court to substitute its judgment for that of the trial court through reevaluation of the testimony and evidence from the record on appeal before it . . . Subject to the appellate court’s right to reject ‘inherently incredible and improbable testimony or evidence,’ it is not the prerogative of an appellate court, upon a de novo consideration of the record, to substitute its judgment for that of the trial court.

334 So.2d 13, 16 (Fla. 1976). Importantly, an appellate court’s grant of deference to a trial court’s factual findings is not absolute. As held in both Shaw v. Shaw and Teffeteller v. Dugger, a trial court’s decision may be reversed on appeal when it lacks competent and substantial evidentiary support. Furthermore, because meaningful appellate review of the judgment below is “all but impossible” in the “absence of detailed findings of fact” to support the court’s conclusion, the proper resolution in such cases is to vacate the lower court’s decision and “remand for further evidence and detailed findings of fact.” Raehn v. Raehn, 557 So.2d 152, 155 (Fla. Dist. Ct. App. 1990). In this case, of course, such a resolution is not possible given that the controversy between the parties in question ended when Ms. Burton delivered a deceased fetus by cesarean section. That said, the rule stated in Raehn v. Raehn demonstrates that a trial court errs when it fails to base its judgment on detailed factual findings.

ii evidentiary basis for the order below As acknowledged by the state in its appellate filings, the factual findings in the order below are so scant that it is extraordinarily difficult to know what evidence the trial court considered before reaching a decision. In its Answer Brief, the state writes, “We are not privy to every word or nuance of the testimony heard by the court and we do not know every item presented for the court’s consideration.” Appellee State of Florida’s Answer Br. at 10. The

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trial court’s findings include general statements of law and legal conclusions about the case before it. Order Authorizing Medical Treatment, In re Unborn Child of Samantha Burton (Mar. 27, 2009) (No. 2009CA1167). The order presents medical findings – presumably based on the testimony of Obstetrician/Gynecologist (OB-GYN) Dr. Jana Bures-Forsthoefel – regarding the progress of Ms. Burton’s pregnancy and the risks faced by her fetus if she did not comply with recommended medical treatment. Id. The findings of fact also include a vague statement about Ms. Burton’s conduct – namely, that she “has exhibited behavior since her admission to Tallahassee Memorial Regional Medical Center (TMH) in contradiction to the health care providers’ instructions and recommendations.” Id. The only other factual finding relates to the trial judge’s assessment of the credibility of parties whose testimony it heard; the court concludes that “where there may be conflicts in the testimony presented, . . . the testimony of Dr. Forsthoefel [is] more persuasive.” Id. The court’s order authorizing involuntary medical treatment upon Ms. Burton was purportedly based on its legal conclusion that the state’s interest in protecting the life and health of her developing fetus outweighed Ms. Burton’s privacy interests, including her right to make decisions about her own medical treatment. The findings of fact proffered in support of the order certainly reflect evidence regarding the medical risks faced by Ms. Burton’s fetus, the recommendations of her health care team, and the fact that some of Ms. Burton’s behavior contradicted these recommendations. However, the trial court’s findings include no facts regarding the medical risks faced by Ms. Burton, the substance of Ms. Burton’s testimony, her behavior while at TMH, or the reasons behind her decision. In justifying its decision, the trial court expressly acknowledged that there were two interests at stake in the dispute: the state of Florida’s interest in protecting Ms. Burton’s developing fetus, and Ms. Burton’s “privacy interests.” Given that acknowledgment, it is shocking that the record below includes no evidence whatsoever of the nature of the interests held by Ms. Burton, the party upon whom the state sought to impose unwanted medical treatment. The only recognition that Ms. Burton’s interests were considered is an acknowledgment that although the court “heard the sworn testimony of Samantha Burton,” it found the testimony of Dr. Bures-Forsthoefel to be “more persuasive.” There is nothing in the record to indicate that the court considered (or even heard) evidence of how granting the state’s petition would impact Ms. Burton’s medical, personal, or legal interests. In the absence of any evidence concerning one of the key interests at stake in this dispute, the court’s order cannot stand.

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A Failure to Consider Evidence Regarding Ms. Burton’s Medical Interests The fundamental issue in this case is whether health care providers have the authority to unilaterally impose medical treatment upon a patient who refuses to grant consent, where the goal of that treatment is to reduce risk of harm to a third party – here, a developing fetus with a gestational age of only twenty-five weeks and whose chances of surviving a premature birth were already low. As a preliminary matter, it is important to consider the language used when discussing the balance of legal interests in question. The trial court uses the term “unborn child” when referring to the subject of the state’s interest – here, a twenty-five-week-old fetus that was developing in the course of Ms. Burton’s pregnancy, and that Ms. Burton hoped to carry to term, deliver, and raise as her third child. The majority opinion uses the phrases “unborn fetus,” “unborn child,” and “fetus” interchangeably. Any term used to describe a fetus under these circumstances (namely, a desired pregnancy rather than one the woman seeks to terminate) is necessarily loaded with social, political, and cultural meaning. In selecting the language to use throughout this concurring opinion, I do not mean to diminish either the medical fact that a fetus at twenty-five weeks of development is very unlikely to survive outside the womb, nor the significance of the state’s and Ms. Burton’s interests in the birth of a healthy child. I have chosen the term “developing fetus” in an effort to acknowledge both the scientific facts regarding the stages of pregnancy and fetal development, as well as the expectation (and hope) held by all parties that Ms. Burton’s pregnancy would conclude with the delivery of a child. The trial court was called upon to resolve legal issues regarding a competent adult’s right to bodily integrity as balanced against the state’s duty to protect an unborn child. However, the court’s resolution of this dispute required not only clarification of the legal rule applicable in such cases but also application of that rule to the particular facts of this case. Key among those relevant facts are medical facts about the treatments the state sought to impose on Ms. Burton, and the consequences of those treatments upon her health and well-being. The state petitioned the trial court to authorize the health care providers at TMH to impose medical interventions upon Ms. Burton against her express refusals. Emergency Petition to Authorize Medical Treatment and Request for Emergency Hearing, In re Unborn Child of Samantha Burton (Mar. 25, 2009) (No. 2009CA1167). The court granted the state’s petition, authorizing the treatment team “to provide such medical care and treatment to Samantha Burton and her unborn child as in their reasonable professional judgment is necessary to preserve the life and health of Samantha Burton’s unborn child,”

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including but not limited to “bed rest, administering appropriate medication, postponing labor, taking appropriate steps to prevent and/or treat infection, and/or eventually performing a caesarean delivery of the child at the appropriate time.” Order Authorizing Medical Treatment, In re Unborn Child of Samantha Burton (Mar. 27, 2009) (No. 2009CA1167). The court justified its decision on the basis of its findings that Ms. Burton’s pregnancy was “high-risk,” and that “at this time, the risk of severe injury or death to the unborn child if Ms. Burton does not follow the course of treatment recommended by Dr. Forsthoefel is substantial and unacceptable.” Id. at 8, 9. Given that the only testimony the trial court heard was from Ms. Burton and Dr. Bures-Forsthoefel, we can only assume that these findings of medical fact were based on the testimony of Dr. Bures-Forsthoefel, the OBGYN treating Ms. Burton at the time of her admission to TMH. These findings of medical fact, however, are so incomplete that they do not satisfy the “competent and substantial evidence” standard required by Florida law. Teffeteller, 734 So. 2d at 1009. The court’s findings address the risks to Ms. Burton’s developing fetus if she does not consent to treatment. However, they do not address how and to what degree those risks might realistically be mitigated by the requested medical interventions – for example, would imposing bed rest reduce the risk of poor fetal outcomes significantly, or only marginally? There is no evidence in the record that Dr. Bures-Forsthoefel testified that imposing bed rest, administration of medication, and postponement of labor would significantly reduce the risk of harm to Ms. Burton’s fetus. Moreover, as emphasized by the American College of Obstetricians and Gynecologists (ACOG) Committee on Ethics Opinion, Maternal Decision Making, Ethics, and the Law (Nov. 2005), obstetricians and gynecologists must be mindful of the fact that medical judgment is fallible, and that risk assessments are necessarily imperfect. By way of example, one study of court-ordered interventions upon pregnant women found that “in almost one third of cases in which court orders were sought, the medical judgment was incorrect in retrospect.” Id. at 7. More troublingly, the trial court’s order includes no factual findings regarding the medical risks to Ms. Burton herself of continuing the pregnancy in the manner she prefers, as compared to the risks associated with the interventions requested by the state. The American Medical Association (AMA) has concluded that seeking court-ordered medical interventions upon a pregnant woman may be appropriate only in “exceptional circumstances,” where the treatment “poses an insignificant or no health risk to the woman, entails a minimal invasion of her bodily integrity, and would clearly prevent substantial and irreversible harm to her fetus.” AMA Board of Trustees Report,

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Legal Interventions during Pregnancy: Court-Ordered Medical Treatments and Legal Penalties for Potentially Harmful Behavior by Pregnant Women, 264 (20) JAMA 2663 (1990). The trial court, in balancing Ms. Burton’s privacy interests against the interests of the state in protecting the health of her developing fetus, failed to acknowledge the significant medical risks associated with the course of treatment recommended by Dr. Bures-Forsthoefel. For example, bed rest (which the state in its Answer Brief describes as having “little health risk” and being only a “minimal invasion of Appellant’s bodily integrity,” Appellee State of Florida’s Answer Br. at 8) in fact has “numerous adverse physiologic and psychological side effects.” Judith A. Maloni et al., Dysphoria among High-Risk Pregnant Hospitalized Women on Bed Rest, 51 Nursing Rsch. 92 (2002). These include alterations in brain activity, sensory deprivation, weight loss, muscle loss, bone turnover, and depression and anxiety (particularly for those prescribed bed rest in the hospital, rather than at home). Id.; David Bjerklie, When Bed Rest Isn’t Best, 163 Time (2004). A cesarean section, also recommended by Ms. Burton’s doctors, is a major abdominal surgery with the significant risks associated with any such operation – infection, hemorrhage, complications with anesthesia, among others. Risk of maternal death is significantly higher when a woman delivers via cesarean section as compared to vaginally. For example, one study found that, even when controlling for multiple medical conditions and intrapartum complications, cesarean section increases the risk of pregnancy-related mortality three- to four-fold. Margaret Harper et al., The Risk of Pregnancy-Related Death Associated with Caesarean Section Remains after Controlling for Multiple Medical Conditions, Intrapartum Complications and Age, 185 Am. J. Obstetrics & Gynecology S124 (2001). Moreover, cesarean delivery reduces the likelihood that a woman will be able to successfully deliver vaginally with future pregnancies. Finally, the long recovery period associated with cesarean section requires a longer hospitalization and significant restrictions on activity in the weeks following surgery, which can impact the mother’s ability to bond with her child and take care of other children in the household. Nothing in the court’s order indicates that Dr. Bures-Forsthoefel testified as to these various risks. And although Ms. Burton sought a second medical opinion, asking to be transferred to another facility, the trial court denied her the opportunity to find a physician who could offer a different medical perspective on her situation. In short, nobody was present to represent Ms. Burton’s medical interests. The trial court’s failure to acknowledge Ms. Burton’s medical interests is further reflected in the language of the order granting the state’s petition.

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Ms. Burton’s pregnancy is described as “high-risk,” but the order suggests that any risks were only to the developing fetus. Order Authorizing Medical Treatment, In re Unborn Child of Samantha Burton (Mar. 27, 2009) (No. 2009CA1167). The order describes Dr. Bures-Forsthoefel, the testifying physician, as “the unborn child’s attending physician.” Id. The impression given is that the developing fetus is being actively treated by a health care professional who can testify on behalf of its best medical interests. But who then is treating Ms. Burton? Dr. Bures-Forsthoefel is an OB-GYN, a physician whose primary patient is the pregnant woman. OB-GYNs also owe a duty of beneficence to a developing fetus, but that duty – at least according to the ethical standards of the medical profession‚ – is secondary. The AMA, for example, emphasizes the “physician’s ethical duty toward the pregnant woman,” though it notes that this duty “clearly requires the physician to act in the interest of the fetus as well as the woman.” AMA Board of Trustees Report, Legal Interventions during Pregnancy: Court-Ordered Medical Treatments and Legal Penalties for Potentially Harmful Behavior by Pregnant Women, 264 JAMA 2663, 2664 (1990). Likewise, the ACOG Committee on Ethics notes that “abstracting the fetus from the pregnant woman” causes a “moral injury” by “failing to recognize the pregnant woman herself as a patient, person, and rights-bearer.” ACOG Committee on Ethics Opinion, Maternal Decision Making, Ethics, and the Law (No. 321, Nov. 2005), 4. The ACOG Committee on Ethics’ recommendations conclusively state that “[p]regnant women’s autonomous decisions should be respected,” and that “treatment regimens aimed at protecting the fetus . . . violate the pregnant woman’s autonomy.” Id. at 9. It is difficult to contemplate how a judge, in adjudicating whether to authorize the imposition of involuntary medical treatment upon a patient, could reach a decision without considering any medical evidence regarding the impact of that treatment upon the patient. And yet, this lack of recognition for the pregnant patient’s medical interests seems to occur in medicine as well as in law. According to the ACOG Committee on Ethics, researchers studying fetal surgery have been criticized “for their failure to assess the impact of surgery on pregnant women, who also undertake the risks of the major surgical procedures.” ACOG Committee on Ethics Opinion, Maternal Decision Making, Ethics, and the Law (Nov. 2005), at 3. The same opinion notes that “in the current clinical and policy contexts, when the woman and fetus are treated as separate individuals, the woman and her medical interests, health needs, and rights as a moral agent, patient, and research subject fade from view.” Id. As the woman’s rights and needs “fade from view” so does her power.

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Numerous studies have shown that health care providers exhibit gender bias, treating female patients less favorably when it comes to responding to medical complaints, diagnosing ailments, and providing treatments. Katarina Hamberg, Gender Bias in Medicine, 4 Women’s Health 237 (2008) (citing research regarding gendered differences in diagnosis and treatment of coronary artery disease, Parkinson’s disease, irritable bowel syndrome, pain, psoriasis, and intensive care use). In particular, there has been extensive research concluding that when patients report pain and discomfort, physicians dismiss these reports and decline to provide appropriate treatment more frequently when the patients are female rather than male. According to one article surveying the literature in this area, “women who seek help are less likely than men to be taken seriously when they report pain and are less likely to have their pain adequately treated.” Diane E. Hoffman and Anita J. Tarzian, The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain, 29 J.L. Med. & Ethics 13, 19 (2001). The research described above shows a medical system that not only devalues medical risks to pregnant women as compared to risks to their developing fetuses, but that devalues the voices of women seeking medical treatment in a wider variety of contexts. In the health care system, women’s voices, their stories, their reports of pain are treated less seriously than those of men. Perhaps we should not be surprised that these prejudices and biases are also inherent when female patients enter our legal system. B Failure to Consider Evidence Regarding Ms. Burton’s Personal Interests Although the trial court heard Ms. Burton’s testimony, the order below gives no indication as to the substance of her testimony. It merely concludes that to the extent her testimony conflicted with that of Dr. Bures-Forsthoefel, the physician’s testimony was more persuasive. Order Authorizing Medical Treatment, In re Unborn Child of Samantha Burton (Mar. 27, 2009) (No. 2009CA1167). This is a reasonable conclusion, and one that we cannot second-guess, particularly with respect to conflicting testimony regarding the medical interventions in question and their impact on the health of Ms. Burton and her developing fetus. But to the extent that Ms. Burton testified as to her personal interests – most notably, the reasons why she engaged in “behavior . . . in contradiction to the health care providers’ instructions and recommendations,” id. – it would be preposterous for the court to conclude that her testimony regarding how she perceived her own interests and values was less credible than that of her physician on the same subject.

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Because the evidentiary record is so scant, it is impossible to know on appeal whether Ms. Burton testified as to which medical interventions precisely she refused to accept, or the interests, concerns, and wishes that drove this allegedly noncompliant behavior. If, at her hearing, Ms. Burton did not share the interests that drove her medical decision-making, it is curious that the judge did not inquire about them so as to gain a better understanding of her personal interests. Assuming she did speak with the trial court judge about the personal interests and motivations that drove her decisions, there is no evidence of that in the court’s order. Surely, the motivations behind Ms. Burton’s behavior are relevant to the court’s determination of how her privacy interests would be affected by involuntary medical treatment. However, the trial court seems to have either made no inquiry into her personal interests or found them not persuasive enough to consider. This gap in the evidence is troubling, but by no means surprising, given the extensive data that has been collected by researchers about gender bias in courts. Two key evidentiary questions that should have been resolved by the trial court are the specifics of Ms. Burton’s conduct and her motivations in declining the physician’s recommendations. The trial court describes Ms. Burton as engaging in “behavior . . . in contradiction to the health care providers’ instructions and recommendations.” Order Authorizing Medical Treatment, In re Unborn Child of Samantha Burton (Mar. 27, 2009) (No. 2009CA1167). The state’s Petition to Authorize Medical Treatment states that “[a]t this point, the Patient has refused to consent” to “certain necessary medical treatment,” or to “follow her attending physician’s orders.” Emergency Petition to Authorize Medical Treatment and Request for Emergency Hearing, In re Unborn Child of Samantha Burton (Mar. 25, 2009) (No. 2009CA1167). However, neither the court’s order nor the state’s petition specify the precise nature of Ms. Burton’s allegedly noncompliant behavior. Although the medical team at TMH recommended a variety of medical interventions, it is unclear whether Ms. Burton refused all of them or only some. From the briefings on appeal, we can gather some additional insight into the specifics of Ms. Burton’s behavior. First, Ms. Burton was admitted to TMH “after voluntarily seeking and complying with prenatal medical care and recommendations to go to the hospital for evaluation of complications.” Second Amended Initial Br. for Appellant at 1. After being evaluated by Dr. Bures-Forsthoefel, Ms. Burton “declined to remain on inpatient bed rest” for the remaining fifteen weeks of her pregnancy, “declined to . . . accomplish complete cessation of smoking for the remainder of her pregnancy,” and requested discharge from the hospital. Id. The state, in its Answer Brief, does

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not challenge these statements of fact. While the Appellant’s Brief does not explicitly state the reasons for Ms. Burton’s refusals, it does state that when the trial court ordered Ms. Burton to be “confined to her hospital bed,” she was not able to care for her two minor children. Second Amended Initial Br. for Appellant at 4. As the Brief of Amici Curiae astutely notes, “it is hard to imagine anything more commonplace than the inability of a mother of two to remain on continuous bed rest[.]” Br. of Amici Curiae American Civil Liberties Union et al., at 19. Looking at the particulars of Ms. Burton’s behavior gives a more nuanced view of the situation. As noted by the ACOG Committee on Ethics, it is a common misconception that “the maternal-fetal relationship [is] paradigmatically adversarial, when in fact in the vast majority of cases, the interests of the pregnant woman and fetus actually converge.” ACOG Committee on Ethics Opinion, Maternal Decision Making, Ethics, and the Law (Nov. 2005), at 3. Here, Ms. Burton voluntarily sought medical care by seeking evaluation and treatment at TMH once she learned that her pregnancy had complications. Such behavior certainly does not suggest that Ms. Burton was disinterested in the safe continuation of her pregnancy – rather, it suggests that Ms. Burton was taking active measures to ensure that she would be able to deliver a healthy child. Ms. Burton’s decision to decline the recommendation of bed rest for almost four months seems to have been motivated by her obligations as a mother to care for her two other children. Given this fact, it is particularly troubling that the court’s order also required that TMH notify the Florida Department of Children and Families so that the agency could “monitor” Ms. Burton and her children. Order Authorizing Medical Treatment, In re Unborn Child of Samantha Burton (Mar. 27, 2009) (No. 2009CA1167). Courts should be hesitant to pass judgment on the reasons driving a patient’s decision to decline treatment in accordance with her constitutional rights. Furthermore, in some cases it may be appropriate to respect a litigant’s privacy by not probing the reasons for their decision too deeply. However, the failure of the trial court in this case to even acknowledge Ms. Burton’s perspective is very troubling. Just as women’s voices are often silenced in society as a whole, the legal system does this as well. In court cases, women’s voices are not always heard – and even when they are, they are often deemed less credible than the voices of men. For example, numerous studies have found that women’s voices are frequently discounted or dismissed within the criminal justice system. Laura E. Reece, Women’s Defenses to Criminal Homicide and the Right to Effective Assistance of Counsel: The Need for Relocation of Difference, 1 UCLA Women’s L.J. 53, 55 (1991). Women are not offered the opportunity to “use

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the reality of women’s lives to establish a defense” by relying on mitigating factors that take into account their lived experiences. Id. at 57. To cite just one example, described in a report on gender bias in Maryland courts, a female victim of domestic violence was denied relief because the judge considered her testimony not to be credible. Viewing her situation from the perspective of a man who has never experienced gender-based violence, the judge told the victim: The reason I don’t believe it is because I don’t believe anything like this could happen to me. If I was you and someone had threatened me with a gun, there is no way that I would continue to stay with them. There is no way that I could take that kind of abuse from them. Therefore, since I would not let that happen to me, I can’t believe that it happened to you.

Karen Czapanskiy, Domestic Violence, the Family, and the Lawyering Process: Lessons from Studies on Gender Bias in the Courts, 27 Family L.Q. 247, 252 (1993) (citing Gender Bias in the Courts: Report of the Maryland Special Joint Committee on Gender Bias in the Courts [1989]). Indeed, many studies demonstrate that when credibility of testimony is at issue, judges’ assessments of credibility often vary on the basis of gender. Elaine Golin, Solving the Problem of Gender and Racial Bias in Administrative Adjudication, 95 Colum. L. Rev. 1532, 1545 (1995). Female witnesses, experts, and attorneys are often considered less credible than their male counterparts. Id. (citing Shari Hodgson & Bert Pryor, Sex Discrimination in the Courtroom: Attorney’s Gender and Credibility, 55 Psych. Rep. 483, 483 [1984]); Amy Walters, Gender and the Role of Expert Witnesses, 83 Geo. L.J. 635 (1994). I wish to reiterate here that our responsibility on appeal is not to revisit the evidentiary record as a whole or second-guess the trial court’s judgments as to the credibility of witnesses. But in this case, the record includes no evidence whatsoever regarding Ms. Burton’s personal interests. A trial court judgment that lacks any evidentiary basis regarding one of the two legal interests it is allegedly balancing falls short of Florida’s standard requiring “competent and substantial evidence.” Teffeteller, 734 So. 2d at 1017.

C Failure to Ensure Representation of Ms. Burton’s Legal Interests Finally, the state concedes that Ms. Burton was not offered an opportunity to be represented by counsel during the hearing at which her right to bodily integrity was being adjudicated. I concur with Judge Van Nortwick that, given the seriousness of the liberty interests at stake, this procedure violated Ms.

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Burton’s constitutional right to substantive due process under both the US and Florida Constitutions. As Judge Van Nortwick explains, while the Sixth Amendment only establishes a right to counsel in criminal cases, a person who is threatened with a significant deprivation of physical liberty in a civil proceeding also has a right to appointed counsel under state and federal law. I would further find that at the time of the hearing, no exigent circumstances existed that would have rendered appointment of such counsel impossible. In its Answer Brief, the state relies on Pemberton v. Tallahassee Memorial Regional Medical Center, 66 F. Supp. 2d 1247 (N.D. Fla. 1999) in support of its claim that “procedural due process does not always require a predeprivation hearing.” Appellee State of Florida’s Answer Br. at 11. In Pemberton, a trial court judge ordered that a cesarean section be performed without consent on a patient, Laura Pemberton; this order was issued after an in-hospital hearing at which the judge heard the testimony of three physicians, Ms. Pemberton herself, and her husband. Id. at 1250. Although Ms. Pemberton was not represented by counsel at the hearing, the appellate court concluded that the procedure the trial court followed – wherein the patient was given notice and an opportunity to be heard – was “all the process that was feasible” under the circumstances, and therefore satisfied the requirements of procedural due process. Id. at 1254. Notably, in Pemberton, the hearing took place after Ms. Pemberton had already been in active labor for over a day, id. at 1249, and the birth of her child was “imminent.” Id. at 1254. Ms. Burton’s circumstances stand in stark contrast to those in Pemberton. Ms. Pemberton was admitted to the hospital while in active labor with a fullterm pregnancy. Her child was going to be born imminently – delivered either at home, vaginally, attended by a midwife; or at the hospital via cesarean section, as was recommended by her physicians. Under such circumstances, it is understandable that both the trial and appellate courts concluded that appointment of counsel was not feasible and that the hearing that took place satisfied procedural due process. And yet, while the trial court in the unquestionably emergent case of Pemberton took time to consider the testimony of the patient, her husband, and three physicians, the trial judge in Ms. Burton’s case reached a decision after hearing only the testimony of Ms. Burton and one physician. In Ms. Burton’s case, unlike Ms. Pemberton’s, birth was not imminent. Ms. Burton was only in her twenty-fifth week of pregnancy when she was admitted to TMH Although her membranes had ruptured prematurely, there is no indication in the record that immediate medical treatment was necessary to prevent imminent harm to her developing fetus. The state’s petition describes the situation as follows:

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[I]f the Patient does not remain a hospital inpatient, on bed rest, with appropriate medication administered under close physician supervision and otherwise follow physician orders with regard to physical activity, smoking, diet, and medication, then the patient has a high likelihood of developing an infection relating to the ruptured membranes and/or premature labor, either of which may result in the death of the unborn child and injury to the mother.

Emergency Petition to Authorize Medical Treatment and Request for Emergency Hearing, In re Unborn Child of Samantha Burton (Mar. 25, 2009) (2009CA1167) (emphasis added). Nowhere in the state’s petition or the trial court’s order is there any indication that the risk of injury or death to Ms. Burton’s developing fetus was imminent, or that treatment must be initiated immediately in order to prevent such harm. Indeed, the medical interventions requested by the state and authorized by the trial court – bed rest, requiring Ms. Burton to follow recommendations regarding physical activity and diet, postponing labor, continuing the pregnancy, and “eventually” performing a cesarean section – all indicate an expectation of a long-term course of ongoing treatment (potentially for the remaining fifteen weeks of her pregnancy). Given that the evidentiary record does not indicate that the situation was emergent and that a decision about Ms. Burton’s medical treatment needed to be made immediately, the trial court’s failure to ensure that Ms. Burton had the opportunity to be represented by counsel at her hearing violated her constitutional rights to due process. In denying Ms. Burton’s right to counsel at the hearing, the trial court once again placed Ms. Burton in a position where her voice – here, the voice of an attorney representing her constitutional interests – was silenced. In this proceeding, the interests of the state, TMH, and Ms. Burton’s developing fetus were fully represented by E. Murray Moore, Jr., who had been appointed as Special Assistant State Attorney and who regularly served as counsel for TMH. Of these three parties, none risked loss of their fundamental constitutional rights in connection with the state’s Emergency Petition. The state sought to exercise its common law parens patriae authority. Although the hospital effectively initiated the proceedings by notifying the state of Ms. Burton’s refusal, it was not formally a party to this case, and thus its interests were not explicitly considered by the trial court. Moreover, any interests TMH may have had were not grounded in its legal rights, but rather in a belief that its institutional duties to Ms. Burton’s developing fetus (and perhaps the professional duties or ethical norms of the TMH physicians) were greater than its responsibilities to Ms. Burton herself. Finally, the petition on behalf of Ms. Burton’s developing fetus sought to protect its interest in life and health – which, while certainly worthy of protection as a matter of public policy, has no constitutional

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basis. Roe v. Wade, 410 U.S. 113, 157–158 (1973) (concluding that the word “person,” as used in the Fourteenth Amendment, “does not include the unborn”). However, Ms. Burton, the party with the greatest legal interests at stake in this dispute, had no attorney to represent her constitutional interests. While disappointing, this procedure should not come as a surprise. Numerous studies, including those commissioned by state and federal courts, have concluded that significant gender bias exists in administrative, civil, and criminal adjudications. Elaine Golin, Solving the Problem of Gender and Racial Bias in Administrative Adjudication, 95 Colum. L. Rev. 1532 (1995); Karen Czapanskiy, Domestic Violence, the Family, and the Lawyering Process: Lessons from Studies on Gender Bias in the Courts, 27 Family L.Q. 247 (1993). Both female litigants and female attorneys are treated more dismissively than their male counterparts. Czapanskiy, supra, at 249. Due process is frequently denied to women whose rights are being adjudicated. For example, administrative agencies “routinely” remove children from battered women’s homes without court orders or due process. Sarah Buel, Effective Assistance of Counsel for Battered Women Defendants: A Normative Construct, 26 Harv. Women’s L.J. 217, 290 (2003) (citing Nicholson v. Williams, 203 F. Supp. 2d 153 [E.D.N.Y. 2002]). In civil commitment hearings – in which patients’ constitutional rights to bodily autonomy are at issue to much the same extent as Ms. Burton’s – women are far less likely than men to be represented by counsel; and unsurprisingly, clients who are not represented by counsel in civil commitment hearings are less likely to maintain their freedom than those who do have legal representation. Grant H. Morris & Elliot D. Luby, Civil Commitment in a Suburban County: An Investigation by Law Students, 13 Santa Clara L. Rev. 518, 582 (1973). Even when counsel is appointed, that is no guarantee that the representation will be effective. One researcher found that female defendants who have been battered by their abusers are subject to ineffective assistance of counsel far more frequently than male defendants in criminal cases. Sarah Buel, supra, at 217. Unfortunately, the trial court’s treatment of Ms. Burton’s legal interests in this case – specifically, its issuance of an order based on a hearing in which Ms. Burton was not offered the opportunity to be represented by counsel – is consistent with these disquieting findings about gender bias in American courts.

iii conclusion In The Cancer Journals, Audre Lorde’s account of her experience with breast cancer, she wrote, “Silence and invisibility go hand in hand with powerlessness.” Audre Lorde, The Cancer Journals 55 (Aunt Lute Books, 1980). The trial

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court’s order authorizing TMH to force unwanted medical treatment on Ms. Burton without ensuring that her medical, personal, and legal interests were adequately represented is a prime example of the link between women’s invisibility and their powerlessness. In an adjudication regarding her fundamental right to bodily integrity, Ms. Burton was rendered invisible, and her voice was silenced. As a result, she was forced to cede her power to make medical decisions – first, to the health care providers who are ethically bound to protect her medical interests; and then, to the judicial system that is in place to protect her legal interests. However, as this case plainly demonstrates, medical and legal decisionmakers alike tend to evaluate women’s interests through a highly biased and paternalistic lens. Such gendered attitudes – whether implicit or explicit – devalue women’s understanding of their own best interests. As a result, physicians and judges whose responsibility it is to promote and support a woman’s right to autonomous decision-making regarding her medical interests often fail to do so in practice. It is a disappointment, though not a surprise, that in this case Ms. Burton was denied her rights to bodily integrity and autonomous choice because decisions were made on her behalf without adequate consideration of her medical, personal, and legal interests. This concurring opinion is one small effort to return some semblance of power to Ms. Burton – to emphasize how her voice was missing from these proceedings, and in turn, to encourage judicial fact finders to ensure that women’s voices are included in the evidentiary record.

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12 Commentary on National Federation of Independent Business v. Sebelius mary ann chirba & alice a. noble

background In 2010, Congress passed the Patient Protection and Affordable Care Act and its companion, the Health Care and Education Reconciliation Act (collectively, the Affordable Care Act, ACA, or Obamacare).1 It ambitiously uses an array of interlocking reforms to achieve its “triple aims” of: (1) expanding insurance coverage and access to care; (2) improving the quality of care; and (3) controlling the rate of cost escalation. It enlists individuals, certain employers, private sector insurers, and government payers to make health care and health insurance more accessible and affordable. Beyond insurance market reforms, it addresses everything from funding Tricare, Indian Health Services, and graduate medical education to reforming Medicare reimbursement and revamping health care delivery models. Noted health economist Henry J. Aaron gave it “a solid ‘A’ for including every cost control idea anyone has come up with.”2 When initially enacted, however, what attracted the most attention – and generated the most controversy – were its strategies for reducing the 40 to 50 million people who, by choice or circumstance, were uninsured and the millions more who were underinsured. President Obama signed the ACA into law on March 23, 2010. Within minutes, Florida and twelve more states filed a complaint that would ultimately result in the US Supreme Court’s first “Obamacare” decision: National Federation of Independent Business (NFIB) v. Sebelius.3 That complaint, and the lawsuits that followed, advanced three lines of attack to strike down all or 1

2 3

Patient Protection and Affordable Care Act, Pub. L. No. 111-148, 124 Stat. 119 (2010), amended by Health Care and Education Reconciliation Act of 2010, Pub. L. No. 111-152, 124 Stat. 1029 (2010) (together the Affordable Care Act). Henry J. Aaron, Letter to the Editor, N. Y. Times, Sept. 9, 2012. 567 U.S. 519 (2012).

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part of the law as unconstitutional. First, mandating an individual to obtain health insurance or impose a financial penalty for not doing so exceeds Congress’ powers to regulate commerce, and tax and spend. Second, the ACA’s expansion of Medicaid was unconstitutionally coercive because it forced states to cover hundreds of thousands more people or lose all federal funding for standard Medicaid. Third, the law is non-severable and if it fails in part, it fails entirely. When the case reached the Supreme Court, the litigants included twentysix states, various individuals, and the National Federation of Independent Business (NFIB) suing the US Departments of Labor, Treasury, and Health and Human Services. The Eleventh Circuit had decided Medicaid expansion was valid under the Spending Clause and the individual mandate violated the Commerce Clause, but the overall law survived based on severability.4 The Sixth Circuit had upheld the individual mandate under the Commerce Clause,5 while the Fourth Circuit had declined to review the mandate’s constitutionality before its enforcement due to the Anti-Injunction Act.6 Most observers predicted that the Supreme Court would uphold Medicaid expansion based on Congress’ power to tax and spend, viewed the individual mandate as more vulnerable under the Commerce Clause, and wondered whether the wild card of severability would, if played, dismantle the entire Act. Media scrutiny of the oral arguments was intense and steadily mounted until the Court released its decision on the final day of its 2011–2012 term. Chief Justice Roberts joined conservative Justices Kennedy, Alito, Scalia, and Thomas to find that the individual mandate exceeded Congress’ power to regulate interstate commerce but also joined liberal Justices Ginsburg, Kagan, Sotomayor, and Breyer to uphold the mandate under the Tax and Spending Clause. An unexpected 7–2 majority ruled that the ACA’s Medicaid expansion program exceeded Congress’ spending power because requiring states to either expand or lose all Medicaid funding was unconstitutionally coercive. Nevertheless, expansion could continue as an optional program that states could accept or reject without jeopardizing their preACA Medicaid funding. That a long and complex law would yield a long and complex plurality decision was no surprise. What did surprise was that the individual mandate, not Medicaid expansion, emerged unscathed and that Chief Justice Roberts, not Justice Kennedy, had come to its rescue. 4 5 6

Florida v. Sebelius, 648 F.3d 1235 (11th Cir. 2011). Thomas More L. Ctr. v. Obama, 651 F.3d 529 (6th Cir. 2011). Liberty Univ., Inc. v. Geithner, 671 F.3d 391 (4th Cir. 2011).

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The Individual Mandate’s Rise and Fall A Republican challenge to Medicaid expansion made perfect sense because the party perennially seeks to cut the program. Less clear was why, after championing an individual mandate for at least three decades, the GOP now decried it as “social redistribution.” An individual mandate was central to President Nixon’s plan for national health reform in 19747 as well as Stuart Butler’s “National Health System for America” developed for the politically conservative Heritage Foundation in 1988.8 In 1993, the GOP’s Health Equity and Access Reform Today Act (HEART) again included an individual mandate to expand coverage and shift costs to the person who incurred those costs. The GOP’s support rested not on communitarian notions of social welfare, but on utilitarian protection of the individual’s right not to pay for another’s high cost health care and parallel responsibility not to shift one’s own health costs to others. Over time, the Democrats agreed, incorporating much of HEART into the ACA. But the more Democrats embraced an individual mandate, the harder the GOP worked to distance itself, ultimately rejecting its once-beloved individual mandate as overtly unconstitutional.

Medicaid Expansion Medicaid is a state and federally funded health insurance program that covers more people in the United States than any other public or private payer. Before the ACA, Medicaid benefits depended on income restrictions (which vary by state) and categorical eligibility, limiting coverage to children, pregnant women, adults with dependent children and certain disabilities, and the elderly. The ACA addresses Medicaid benefits, administration, and eligibility, but NFIB deals only with the statute’s plan to expand eligibility. The Act ends categorical requirements and raises the income cap to 138% of the federal poverty level (FPL), or $16,394 for an individual and $33,534 for a family of four in 2018. States initially receive 100% federal funding for newly covered individuals, declining over time to 90% (substantially higher than the average 50% match for traditional Medicaid). States that do not expand would forfeit all federal funding for conventional Medicaid. Congress saw this as a proper exercise of its spending power to reduce the number of uninsured. The NFIB 7

8

President Richard Nixon’s Special Message to the Congress: Proposing a Comprehensive Health Insurance Plan KHN (Feb. 6, 1974), at [https://perma.cc/2TR2-ECB2]. Stuart M. Butler & Edmund F. Haislmaier, A National Health System for America (Stuart M. Butler & Edmund F. Hailsmaier eds., 1989).

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Court disagreed and, in the process, unleashed a new era of Medicaid coverage disparities among the states.

original opinion Justices Ginsburg, Kagan, Breyer, and Sotomayor voted to uphold the individual mandate and Medicaid expansion, at least in part, while Justices Scalia, Alito, Thomas, and Kennedy wanted to strike down both provisions and, with them, the entire law. Chief Justice Roberts aligned himself with different groups on different issues.

The Individual Mandate The Court found that the Anti-Injunction Act9 did not bar consideration of the individual mandate because the Act denotes it as a “penalty,” not a “tax.” Chief Justice Roberts, joined by Justices Alito, Kennedy, Scalia, and Thomas, decided the individual mandate violates the Commerce Clause because despite Congress’ broad power to regulate commerce (such as purchases within the health insurance market), it cannot compel anyone to engage in commerce who, for whatever reason, is inactive in that market (such as the typically young and healthy who do not buy insurance). Nevertheless, Chief Justice Roberts, now joined by Justices Breyer, Ginsburg, Kagan, and Sotomayor decided that while not designated a “tax” for Anti-Injunction Act purposes, the mandate’s “penalty” has the effect of a tax and thus survives under the Tax and Spend Clause. Justice Ginsburg, with Justices Breyer, Kagan, and Sotomayor would also uphold the individual mandate under the Commerce Clause.

Medicaid Expansion For Chief Justice Roberts, with Justices Breyer and Kagan, forcing states to expand or forego all federal funding for pre-ACA Medicaid was not a choice but “a gun to the head.”10 This forced “choice” violated the Spending Clause as unduly coercive, but it could endure as an option: States can choose either to accept or reject federal expansion funding without jeopardizing their federal match for traditional Medicaid. 9 10

26 U.S.C. § 7421. 567 U.S. 519, 581 (2012).

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Justices Ginsburg and Sotomayor would have upheld Medicaid expansion as the latest of some 200 instances of Congress using its spending power to amend Medicaid since enacting it in 1965. Justices Scalia, Alito, Kennedy, and Thomas saw the ACA’s version of Medicaid expansion as unconstitutionally coercive. The Court had no power to rewrite the statute by making a mandatory program optional. If expansion was unconstitutional as written – as all but two justices agreed – it was unconstitutional, and that is that. Further, the ACA is non-severable; the failure of any one part defeats the entire law. Justice Thomas wrote separately to restate his long-standing criticism that in this and past cases, the Court has gone too far in upholding Congress’s authority to regulate activities that substantially affect commerce. Dissecting the Rationales: Rescuing the Individual Mandate as a Tax The NFIB majority stopped short of embracing Justice Thomas’ view, but it echoed his concerns that the power to regulate interstate commerce and activities that substantially affect it has its limits. It does not permit Congress to create commerce or compel market activity by requiring individuals to buy health insurance or pay a penalty. The individual mandate primarily “targets” and “affects” healthy young adults “whose commercial inactivity rather than activity is its defining feature” by forcing them to buy insurance for health care that they do not want and, most notably, do not need.11 Justice Scalia added that the young and healthy “have no intention of purchasing most or even any of such goods or services and thus no need to buy insurance for those purchases.”12 Countering the Government’s – and Justice Ginsburg’s – contention that everyone is already in the market for health care even if not active in the health insurance market, he remarked sarcastically: “[i]t is true enough that everyone consumes ‘health care,’ if the term is taken to include the purchase of a bottle of aspirin.”13 Beyond aspirin, “the young people” are “quite simply not participants in that market, and cannot be made so (and thereby subjected to regulation) by the simple device of defining participants to include all those who will, later in their lifetime, probably purchase the goods or services covered by the mandated insurance.”14 Justice Ginsburg identified three major flaws in this reasoning. First, the Court focused on the wrong market; the relevant market is for health care goods 11 12 13 14

Id. at 556. Id. at 656 (Scalia, J., dissenting). Id. Id.

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and services, and already includes everyone – a boast that even Apple and Facebook cannot make. The mandate does not compel individuals to enter this market; they are already in it and health insurance is just a means of paying for their activity. Second, unlike other markets, consumption of health care goods and services is frequently unpredictable, typically high cost and routinely provided even if the patient cannot pay for it – any of it – either now or in the future. Such “free” care carries a steep price because its cost is shifted in the form of higher costs for those who are insured. Third, foregoing preventive care and treating disease later rather than sooner generate additional costs which are also shifted to the insured. The net result is both predictable and inevitable: In the market for health care goods and services, the insured subsidize as the uninsured take a free ride. This activity is already occurring and, as such, is properly regulated under the Commerce Clause.15 Instead of speculating about why young people go uninsured as Roberts and Scalia did, Justice Ginsburg examined empirical evidence, including the National Center for Health Statistics’ 2009 Summary Health Statistics for the US Population which showed that going without coverage has little to do with unwillingness to pay and everything to do with inability to pay. The high cost of insurance was the number one reason for young people not insuring. Losing a job was number two. Additional reasons for young people not insuring included not having health benefits through work; being denied coverage for preexisting conditions; losing Medicaid coverage; not being able to pay due to divorce, death of a spouse; and becoming ineligible for a parent’s or school’s health plan due respectively to age or graduation. “Did not want or need coverage” generated too few responses to make it onto the list.16 The individual mandate nevertheless survived because Chief Justice Roberts agreed with Justices Breyer, Ginsburg, Kagan, and Sotomayor that the mandate penalty functions as a tax, making it a valid exercise of Congress’ power to tax and spend.17 A Partial Rescue of Medicaid Expansion as an Optional Program Seven justices rejected the idea that the ACA gives states a “choice” of either expanding Medicaid eligibility to cover more people with more federal dollars or lose all federal funding for conventional Medicaid. The threat of a fatal 15 16

17

Id. at 599 (Ginsburg, J., concurring in part). Id. at 596 n. 1 (citing Dept. of Health and Human Services, National Center for Health Statistics, Summary Health Statistics for the US Population: National Health Interview Survey – 2009, Ser. 10, No. 248, p. 71, Table 25 [Dec. 2010]). Id. at 574.

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blow to basic Medicaid is not a choice; it is intolerably and, therefore, unconstitutionally coercive. Nevertheless, the obligation to interpret statutes as constitutional to the extent possible led Chief Justice Roberts and four others to construe expansion as optional. Post-NFIB, states can expand, largely at federal expense, or decline without losing their federal match for traditional Medicaid.18

feminist judgment NFIB can be analyzed – and criticized—through any number of lenses including political philosophy, bioethics, constitutionalism, and more. A more fundamental criticism rests on the pragmatic concern that a majority of the justices have little understanding of – and a surprising lack of curiosity about – the lived experience of many Americans with the complex and fragmented market for health care. This is particularly troubling for women who have more to gain than their male counterparts from a reformed health care system, and more to lose should it falter. As Professor Elizabeth Weeks, writing as Justice Weeks, forcefully reminds us, women are disproportionately lower income, uninsured, and burdened by medical debt. Moreover, discriminatory practices by insurers have long disadvantaged women expressly by gender rating and limiting coverage for maternity care, and implicitly, for example, through preexisting condition exclusions. Thus, in her opinion concurring in part and dissenting in part, Weeks opines, Medicaid expansion and the individual mandate concern more than commerce, taxing and spending; at their core, they protect an individual’s civil rights to coverage and care. Weeks cites works by feminist legal theorists, including Martha Albertson Fineman19 and Catherine MacKinnon20 to support her arguments. Her civil rights analysis also evinces her feminist approach. A remaining question with particular import for women is: What kind of care and coverage do these civil rights protect? Feminist thinking, implicit in the civil rights analysis of Weeks, assists in finding an answer. Simone de Beauvoir famously observed in The Second Sex that “man is defined as a human being and woman as a female – whenever she behaves as a human being she is said to imitate the male.”21 A feminist theory of sameness 18 19

20 21

Id. at 582–583. Martha Albertson Fineman, Feminist Legal Theory, 13 J. Gender, Soc. Pol’y, & L. 13, 21 n. 40 (2005); Transcending the Boundaries of Law: Generations of Feminism and Legal Theory 357 (Martha Albertson Fineman ed., 2011). Catharine A. MacKinnon, Toward a Feminist Theory of the State 95 (1989). Simone de Beauvoir, The Second Sex 83 (1949).

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and equality might describe this right as ensuring equal access to the same care as men. This worked well for Justice Ginsburg when, before joining the Supreme Court, she successfully argued that, while sex differences do exist and are often meaningful, eligibility for various government financial benefits programs must be gender-neutral. This treats similarly situated men and women equally instead of perpetuating gender stereotypes that serve no legitimate interest.22 In this context, same and equal are fair and therefore required by law. Nevertheless, as applied to women’s health, same and equal may not be enough and the ACA must require more. In A Different Voice, Carol Gilligan explores the ways in which gender differences may require something other than same or equal in order to secure equal opportunities for women, be it a promotion at work or access to a mammogram.23 Although imperfect, the ACA holds potential for realizing greater equality and equity for women. To date, the Act has greatly improved women’s health and women’s lives in many ways. By prohibiting gender rating, it secures a woman’s equal right to pay the same premium as men, reflecting the feminist principles of equality and sameness that fueled attorney Ruth Bader Ginsburg’s successful Supreme Court arguments for gender-neutral financial benefits. In the context of women’s health, Justices Ginsburg, Sotomayor, Kagan, Breyer, and hopefully Chief Justice Roberts would probably agree that equality and sameness may be important, but they are not enough. Equal access and costs mean little if the health care itself is not adequate or appropriate for the person who needs it. In this regard, women must not be viewed as one homogenized population. As individuals, each woman has her our own health profile, carries her own risk factors and, therefore, differs from other women. As a group, women face gender-neutral needs that equally affect men but also have gender-specific concerns that change over a lifetime. Feminism can inform and improve ACA jurisprudence – and, more importantly, care and coverage – only if theories of sameness and difference coalesce into a pragmatic recognition of who women are, what they need, and why they are legally entitled to it.

implications and commentary In NFIB, however, a majority of justices view the individual mandate and Medicaid expansion through a cloudy lens of sameness that obscures 22 23

See, e.g., Brief for Appellee, Weinberger v. Wiesenfeld, 419 U.S. 822 (1974) (No. 73-1982). Carol Gilligan, A Different Voice, in the Future of Difference (Hester Eisenstein & Alice Hardine, eds.,1985).

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important distinctions between the young and old, healthy and sick, insured and uninsured, rich and poor and, by implication, women and men. Justice Ginsburg’s concurrence sharpened the focus on the lived experience of people by using data and economic justifications for the constitutionality of the individual mandate. Weeks would add a civil rights justification, bringing further clarity to the need for both the Medicaid expansion and the individual mandate to upset modes of historical discrimination based on gender-based “values” and stereotypes. The Individual Mandate In rejecting the individual mandate as a valid regulation of commerce, Chief Justice Roberts and Justices Kennedy, Scalia, Thomas, and Alito misperceive the mandate’s role and ignore its true dictate: that each of us does or soon will receive goods and services in the health care market and should assume responsibility for their costs. They do acknowledge that getting “the young people” into the health insurance risk pool is important to spread risk and moderate premiums. Their less than firm grasp on health care and coverage nonetheless impedes their ability to see that “the young people” in that risk pool are not simply bestowing a financial benefit on the old or sick; they are benefiting themselves. Justices Ginsburg’s dissent explains that Congress has not created commerce or compelled young people, or anyone else to enter a market; they are already there. Empirical evidence reveals a more intimate relationship between young people and health care, and a different relationship between health care and health insurance markets. She sees what the majority overlooks: The high costs of uncompensated care are not extinguished by going bare. They are fully realized but instead of being paid for by the recipient of that care, they are externalized and shifted to someone else. The decisions of some to forego insurance boosts costs for all and places health care out of reach for many – especially “the young people.” This reality falls particularly hard on women of any age whose health needs require regular screening and other preventive care that, by virtue of biology, men simply do not need. Moreover, “the young people” includes healthy women of reproductive age who have ongoing and particularized health care needs. Medicaid Expansion and the NFIB’s “Medicaid Gap” In permitting the expansion to survive as “optional,” the Court, perhaps unwittingly, ushered in an era of Medicaid coverage disparities among the

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states. The ACA presumes nationwide Medicaid expansion. Without expansion, most adults without dependent children are categorically ineligible for traditional Medicaid at any income; access for parents of dependent children is limited to those in deep poverty. The median upper income limit for parents was 43% FPL (approximately $9,000 for a family of three). The ACA expands Medicaid eligibility by basing it on income alone with a required income cap of 138% FPL. Separate and apart from Medicaid, the ACA also provides ”premium tax credits” to those with incomes of at least 100% FPL up to 400% FPL to subsidize their purchase of insurance on the state and federal exchanges. Exchange subsidies were not at issue in NFIB and operate without regard to a state’s expansion status. Courtesy of NFIB, 4.9 million people in nonexpanding states now fall into the “Medicaid gap” because they would qualify for coverage under the ACA’s expansion criteria but not under the traditional Medicaid program. Moreover, individuals in nonexpanding “gap” states still pay for expansion through federal income taxes; they just don’t receive the benefits of insuring more people, reducing uncompensated care and, in the process, shoring up their state’s budget, and moderating everyone’s overall costs and premiums.24 Adoption of the Weeks dissent would have averted these developments and Medicaid would be a seamless program of universal coverage for those who meet the income criteria. Upon implementation of the expansion in January 2014, only twenty-three states had expanded, with “blue” states far more likely to expand than “red” states. As more states received almost full funding for their Medicaid expansion population, red states have found it increasingly difficult to turn down expansion dollars. Thus, as of July 2019, thirty-six states, plus the District of Columbia, have expanded.25 For at least nine states, § 1115 waivers helped to overcome political resistance by permitting flexible design and incorporation of conservative features. Although § 1115 waivers are often used to customize state programs, adoption of Weeks’ dissenting opinion would have minimized those waivers that introduce new restrictions on benefits and eligibility to this expansion population. To date, CMS has approved waivers that use premiums, premium assistance, benefits restrictions, and wellness or healthy behavior incentives. Whereas the Obama administration automatically vetoed Medicaid work

24

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Robin Rudowitz & Larisa Antonisse, Implications of the ACA Medicaid Expansion: A Look at the Data and Evidence KFF (May 23, 2018), [https://perma.cc/7B88-ZKY4]. Where States Stand on Medicaid Expansion, Nat’l Ass’n State Health Pol’y, [https://perma .cc/SU2V-S7LS].

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requirements, the Trump administration embraced them for certain nonelderly, nonpregnant, and nondisabled adults, and approved them for seven states by July 201926 (although, at least for the time being, two state waivers have been set aside by a federal court).27 Section 1115 waivers may be more politically palatable, but they are often more restrictive leaving many without coverage who would otherwise qualify through standard ACA expansion. One estimate projects that 600,000–800,000 individuals could lose Medicaid coverage in states that have applied for a work-requirement waiver.28

NFIB’s Impact on Women’s Health In NFIB, all who weighed in on the individual mandate, either pro or con, discussed the young and healthy at length. Similarly, all who wrote about Medicaid expansion discussed the needs of the poor. One group or, as Chief Justice Roberts might put it, “class” of actors in and outside the health insurance market is women. They were not central to the Court’s decisions about either issue but are certainly affected by both. The five justices who voted to invalidate the individual mandate penalty – all male – displayed little understanding of the actual health needs of “the young people” and would likely do the same for women’s health. The opinion by Weeks foregrounds women and their history of discrimination. Before the ACA’s insurance reforms took effect, age rating was common. Charging women premiums more than men for the same coverage was routine, with women paying more for their health care each year.29 At the same time, approximately 88% of plans in the individual market did not cover basic maternity care.30 For individual and employer plans alike, men commonly received coverage for Viagra and Cialis while women were left to pay 100% out-of-pocket for contraception.31 26

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Medicaid Waiver Tracker: Approved and Pending Section 1115 Waivers by State, KFF (June 26, 2020), [https://perma.cc/U87X-57WP]. Gresham v. Azar, 363 Fed. Supp. 3d 165 (D.D.C. 2019) (Arkansas waiver); Stewart v. Azar, 313 Fed. Supp. 3d 237 (D.D.C. 2018) (Kentucky waiver). Leighton Ku & Erin Brantley, Medicaid Work Requirements in Nine States Could Cause 600,000 to 800,000 Adults to Lose Medicaid Coverage, The Commonwealth Fund (June 21, 2019), [https://perma.cc/5MNP-KXMK]. Sarah R. Collins et al., The Commonwealth Fund, Realizing Health Reform’s Potential: Women and The Affordable Care Act of 2010 3–4 (2010). ObamaCare and Women: ObamaCare Women’s Health Services, ObamaCareFacts.com, [https://perma.cc/6ZMF-9L4Y]. Geraldine Sealey, Erections Get Insurance; Why Not the Pill, ABC News (Jan 14, 2006, 12:51 PM), [https://perma.cc/4Q9H-4FUM].

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From its inception, the ACA was recognized as an imperfect law that would need to be refined but would most likely make substantial gains in the short term which would grow over time. To date, the law has performed as anticipated in both positive and negative respects. Approximately 20 million people have gained insurance, and insurers in the individual and small group markets are achieving profitability. For women in particular, the ACA has delivered better access to coverage and care, due in large part to the end of gender discrimination in insurance practices. Now, gender rating is impermissible as are preexisting condition exclusions, both of which had disproportionately impeded women’s access to health care before the ACA.32 Since the individual mandate took effect in 2014, the rate of uninsurance among women dropped from 19% in 2013 to 11% in 2017.33 Rates of uninsurance for low-income women still vary widely among states based on adoption of Medicaid expansion. In the expansion states of Massachusetts and Washington, DC., 97% of low-income women are insured as compared with 78% in Texas, a nonexpanding state.34 At the same time, health care costs and health insurance premiums continue to rise (albeit more slowly than in pre-ACA days), imposing substantial cost burdens on payers and individuals with, again, a disproportionate impact on women. This disparate impact would be mitigated had Weeks’ dissent been adopted as the majority opinion. Despite these challenges, the Kaiser Family Foundation reports that public support for the ACA has grown substantially, particularly since the individual mandate took effect in 2014. Support is even higher when polling focuses on specific components of the ACA – especially regarding women’s health. In a series of public opinion polls by the Kaiser Family Foundation in 2017 and as recently as November 2018, approximately 80% stated that it was important to preserve the ACA’s requirements of: (1) no cost sharing for preventive services (including mammograms); (2) no gender rating; (3) federally funded reproductive services for “lower income” women; and (4) federal funding for Planned Parenthood’s non-abortion services. Only 33% realized that federal law prohibits federal funding of abortion, including 25% of Republican women and 26% of Republican men. For contraceptives, 54% would maintain the ACA’s requirement that they be available with no cost sharing, and 57% oppose the Trump administration’s decision to allow employers to drop

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Usha Ranji et al., Barriers to Care Experienced by Women in the United States, 321 JAMA 2154 (2019), [https://perma.cc/HSP7–485B]. Women’s Health Insurance Coverage, KFF (Jan. 24, 2020), [https://perma.cc/NBM7–4CRK]. Id.

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contraceptive coverage for religious or moral reasons. 89% support the ACA’s required inclusion of maternity coverage in private insurance plans and that number climbs to 93% once it is explained that the cost of maternity care would rise should insurers be able to exclude this benefit.35 The statistics on Medicaid expansion provide additional evidence that, in general, the ACA is working as intended with fairly good results. As noted, all but fourteen states have expanded, including “red” states, albeit increasingly via waivers that often provide more limited access than the ACA’s original expansion program. Medicaid covers 36% of all adult women aged nineteen and above, compared with 21% of men; 67% of those women are of reproductive age – namely “the young people”36 –with a disproportionate share coming from vulnerable populations. In 2017, Medicaid covered 17% of nonelderly women with higher rates for single parents, Black and Latina women, and those without a high school education.37 The implications of expansion are significant for low-income women.38 20% of women with incomes below 200% FPL are uninsured, compared with just 7% above 200% FPL. Uninsured women have less access to health care, get fewer preventive services such as mammograms and blood pressure checks, and receive a lower standard of care when they do have access.39 In nonexpanding states, women face often insurmountable barriers to obtaining traditional Medicaid coverage. These include categorical requirements (limited to pregnant women, parents with a dependent child, the disabled, or elderly) and more restrictive income caps (below 50% FPL in ten states).40 Eligibility hurdles are not unique to nonexpanding states, however. Section 1115 waivers with work requirements, automatically rejected under the Obama administration, are now being approved and implemented, and the early signs are worrisome. 85% of women live in families with at least one adult working part-time or full-time.41 Work requirements often target individuals who are already working and subsequently lose coverage due to the added administrative complexity. A Harvard University study of Arkansas’ work requirement found that prior to its implementation “more than 95% of the target population appeared to meet the requirements or qualify for an exception,” but

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Public Opinion on Women’s Health and Preventive Care, KFF (Jan. 22, 2020), [https://perma .cc/H3T2-QLBZ]. Medicaid’s Role for Women, KFF (Mar. 2019), [https://perma.cc/UR3S-NLWQ]. Id. Women’s Health Insurance Coverage, KFF (Jan. 24, 2020), [https://perma.cc/ZF34-ZGX5]. Id. Medicaid’s Role for Women, supra note 36. Women’s Health Insurance Coverage, supra note 38.

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17,000 Medicaid beneficiaries lost coverage within the first six months of the program.42 HHS Secretary Azar hypothesizes that they probably found jobs with health benefits,43 but the data show unequivocally that administrative complexity – not increased employment – caused thousands of Medicaideligible people to lose coverage.44 A federal district court has invalidated Arkansas’ work requirement along with Kentucky’s,45 but as of July 2019, CMS has approved seven additional work requirement waivers, although only Indiana’s is currently implemented. An additional seven work requirement waivers are pending before CMS.46

conclusion In NFIB, Justice Ginsburg displayed the greatest understanding of what the health care market is and how it works. She knows that like it or not, everyone is in that market and, like it or not, everyone will need health care. It is more than safe to say that, had women’s health been front and center, Justice Ginsburg would see a woman’s rights to health care and coverage as basic civil rights protected by the US Constitution. In view of Weeks’ compelling argument for a civil rights-based approach, it is equally assured that Justice Ginsburg will not stand alone, but will enough stand by her? This is not a rhetorical question or thought experiment. It is an urgent concern because today, access to women’s health services is under attack by the US Senate’s ongoing determination to repeal and replace the ACA, and its tacit approval of the Trump administration’s unrelenting efforts to override the law or at least destabilize it to the point of collapse. The fate of the ACA may be a political question, but the consequences of its demise are practical facts – and as recounted above, they are not pretty. When these matters find their way to the Supreme Court, hopefully more than the usual suspects will join Justice Ginsburg in understanding the many ways in which going without health care and coverage costs us dearly – all of us. Especially women. 42

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Benjamin D. Sommers et al., Medicaid Work Requirements – Results from the First Year in Arkansas, 381 New Eng. J. Med. 1073, 1079 (2019). Rachana Pradnan, Trump-Approved Medicaid Work Rules Didn’t Increase Employment, Study Finds, Politico (June 19, 2019), [https://perma.cc/SH9R-TLT5]. Sommers et al., supra note 42. Gresham v. Azar, 363 Fed. Supp. 3d 165 (D.D.C. 2019) (Arkansas waiver); Stewart v. Azar, 313 Fed. Supp. 3d 237 (D.D.C. 2018) (Kentucky waiver). Medicaid Waiver Tracker: Approved and Pending § 1115 Waivers by State, KFF (June 26, 2020), [https://perma.cc/PW5S-7WLP].

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NATIONAL FEDERATION OF INDEPENDENT BUSINESS V. SEBELIUS, 567 U.S. 519 (2012)

justice elizabeth weeks, concurring in part and dissenting in part I join the Chief Justice’s decision with respect to Parts I (granting amicus curiae) and II (holding that the Tax Anti-Injunction Act does not bar this claim). I also join the Chief Justice’s decision, but not its reasoning, on Part III. I agree that the Patient Protection and Affordable Care Act’s (ACA) Shared Responsibility Payment, 26 U.S.C. § 5000A(b)(1), commonly called the individual mandate, is a valid exercise of federal taxing and spending power. U.S. Const. art. I, § 8, cl. 1. I also agree, however, with Justice Ginsburg that the provision is valid under the commerce power. U.S. Const. art. I, § 8, cl. 3. I write separately to emphasize the ways in which the individual mandate is a critical and constitutionally permissible exercise of congressional power to regulate the existing interstate market for health care. Health care is a robust, nationwide industry that inevitably serves all Americans, healthy and unhealthy, male and female, young and old. The individual mandate essentially operates as a regulation of the way that individuals pay for services that they necessarily already are receiving and has the associated effect of broadening access to health care markets for all. The commerce power allows for such regulation on a national scale. As further justification for the mandate’s constitutionality, I explain that the ACA in many respects operates as a civil rights law, consistent with several existing antidiscrimination statutes previously enacted under the commerce power. See, for example, Civil Rights Act of 1964, Title II; see also Heart of Atlanta Motel, Inc. v. United States, 379 U.S. 241 (1964) (prohibiting discrimination by hotel operators); Katzenbach v. McClung, 379 U.S. 294 (1964) (prohibiting discrimination by restaurant owners). I dissent from the Chief Justice’s decision in Part IV, holding that the ACA’s expansion of Medicaid to low-income individuals, irrespective of other categorical eligibility, 42 U.S.C. § 1396a(a)(10)(A)(i)(VIII), exceeds the congressional spending power. Again, many of Justice Ginsburg’s points regarding prior amendments to and expansion of the Medicaid program are well-taken. I write separately to further elucidate the errors in the Chief Justice’s description of the history and operation of the Medicaid program. I depart from both the Chief Justice’s and Justice Ginsburg’s opinions on the question of remedy. Upon holding Congress’ duly enacted amendment to the Medicaid program

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unconstitutional, the Chief Justice relies on the Medicaid Act’s own severability provision, 42 U.S.C. § 1303, to cure the defect. Specifically, the Chief Justice holds that the Medicaid Act’s penalty for noncompliance with federal regulations, 42 U.S.C. § 1396c, applies only to the states’ existing Medicaid programs. In other words, if a state declines to extend coverage to the ACA’s expansion population, that state’s existing federal Medicaid dollars are not at risk. This second-best remedy provides some solace inasmuch as it does not fully strike down the ACA’s Medicaid expansion. But I fear that such an approach invites a race to the bottom, as states opt in or out, or individually negotiate with federal authorities to include particular features for their state programs, including new barriers to access, eligibility requirements, and benefits models that harm the very individuals whom the program was enacted to serve. While state flexibility is a hallmark of the Medicaid program, it should not be allowed to eviscerate the program’s very purpose. The overarching question in this case, in both parts of the opinion, is whether Congress’ attempts to nudge the nation closer to universal health care, while retaining our persistent private-public hybrid health care design, was constitutional. Although the instinct behind both the individual mandate and Medicaid challenges derives from core American values of autonomy and “the right to be let alone,” see Olmstead v. United States, 277 U.S. 438, 478 (1928) (“[The Framers] conferred, as against the government, the right to be let alone – the most comprehensive of rights and the right most valued by civilized men.”); see also United States v. Katz, 389 U.S. 347, 349 (1967) (citing Samuel D. Warren & Louis D. Brandeis, The Right to Privacy, 4 Harv. L. Rev. 193 [1890]). These claims are brought instead as structural constitutional challenges, not as individual rights challenges. The individual mandate is challenged as exceeding Congress’ power under the interstate commerce clause; although ultimately, the Chief Justice upholds it under Congress’ power to tax and spend for the general welfare. Medicaid expansion is challenged as exceeding previously articulated limits on Congress’ “conditional” spending power. See Coll. Sav. Bank v. Fla. Prepaid Postsecondary Ed. Expense Bd., 527 U.S. 666, 686 (1999); South Dakota v. Dole, 483 U.S. 203, 205–206 (1987) (conditioning federal highway funds on states raising their drinking age to 21); id. at 211–212 (describing limits on conditional spending power). The core of the dispute over the mandate is that individuals do not want to be compelled to purchase health insurance. Healthy individuals do not want to be compelled into a group risk pool that would have the effect of making health insurance more affordable (and, thereby, more accessible) for others, including those with preexisting conditions and appreciable health risks. The

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Medicaid expansion challenge more clearly implicates states’ rights; however, the argument is grounded in fundamental objections to expansion of both federal authority and public welfare programs. Opponents seem to hew to a view that able-bodied adults should and, therefore, must provide for themselves, rather than receiving government assistance. By contrast, the ACA’s private market reforms reflect a different policy preference with respect to the role of government with respect to individuals and access to health care that is more communitarian than individualistic. That view, with the individual mandate as a linchpin to the strategy, was not an easy sell in Congress, but the various interconnected elements of the Act managed to garner enough votes to pass. See H.R. Rep. No. 43, 111th Cong. (Mar. 21, 2010), [https://perma.cc/9F6Y-8Z62]. Health care still is viewed largely as a personal matter, a private-market transaction between patient and health care provider. Third-party payment for health care evolved in fits and starts since the early 1900s; it was driven by various forces, including competition among employers, Paul Starr, Transformation in Defeat: The Changing Objectives of National Health Insurance, 1915–1980, 72 Am. J. Pub. Health 78 (1982), and, later, generous federal tax subsidies to employers. Earnings spent on employee benefits are not taxed, 26 U.S.C. § 3121(a)(2) (B), while the same earnings paid toward salary or wages are. § 3121(a). Those remain the dominant incentives for employers to provide health insurance to their workers. The ACA continues to lean heavily on private employers to cover the costs of health care in the United States and even further cements that reliance by adding nudges in the form of an enrollment default rule, which passed Congress but quickly was repealed. Section 18A of the FLSA, as added by Section 1511 of the Affordable Care Act, directs an employer who is subject to FLSA and has more than 200 full-time employees to automatically enroll new full-time employees in one of the employer’s health benefits plans (subject to any waiting period authorized by law). Additionally, large employer “free rider” penalties are triggered if an employer fails to offer health insurance, or affordable, minimum essential coverage and an employee receives subsidized coverage on the health insurance exchanges. 26 U.S.C. § 4980H. Outside of employer-sponsored group plans, commercial health insurance historically has been treacherous terrain. Pre-ACA, state regulations varied widely regarding plan substance, Timothy Stoltzfus Jost, The Regulation of Private Health Insurance, Nat’l Acad. of Soc. Ins., 1, 11–24 (2009), [https:// perma.cc/RYD7-JPV9], but there was little to no regulation of plan pricing. Id. at 11 (noting that “state approval was generally not required before policies or rates went into effect”). Using its commerce power, Congress enacted the ACA in an effort to rationalize the commercial health care market on a

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nationwide scale, seeing that state-level solutions were not working. NFIB v. Sebelius, 567 U.S. 519 (2012) (Ginsburg, J., concurring). Thus, enter the two provisions at issue in this case, two components of a complex, interconnected plan to achieve near-universal coverage. The individual mandate sought to broaden access to and moderate pricing in the private insurance market by bringing more people into the insurance risk pool. The Medicaid expansion recognized that a cohort of previously excluded needy individuals deserved to have access to health care via a public benefits program. Since at least 1965, when Medicare and Medicaid were enacted, federal health care policy has maintained the view that at least some individuals’ ability to access health insurance should not be determined by the private market. I turn now to consider each challenge in turn. Contrary to the Chief Justice’s reasoning, there are two reasons why the individual mandate is constitutionally within Congress’ power to regulate interstate commerce. First, dysfunctions that characterize the US health care market call for national solutions, consistent with the purpose underlying the commerce power. See N. Am. Co. v. SEC, 327 U.S. 686, 705 (1946) (“This broad commerce clause does not operate so as to render the nation powerless to defend itself against economic forces that Congress decrees inimical or destructive of the national economy. Rather it is an affirmative power commensurate with the national needs.”). Second, the ACA’s interconnected provisions, grounded in the individual mandate, operate as civil rights laws, a previously recognized and well accepted use of federal commerce power. See Heart of Atlanta, 379 U.S. at 257 (noting “the overwhelming evidence of the disruptive effect that racial discrimination has had on commercial intercourse”); see also Katzenbach, 379 U.S. at 303 (“Congress has determined for itself that refusals of service to Negroes have imposed burdens both upon the interstate flow of food and upon the movement of products generally”).

i Contrary to the Chief Justice’s and the Dissents’ conclusions, regulation of health care and health insurance markets is well within Congress’ power to regulate interstate commerce, as it has done repeatedly. As Justice Ginsburg’s opinion emphasizes, “Under the Articles of Confederation, the Constitution’s precursor, the regulation of commerce was left to the States. This scheme proved unworkable, because the individual States, understandably focused on their own economic interests, often failed to take actions critical to the success of the Nation as a whole.” NFIB, 567 U.S. at 599–600 (Ginsburg, J., concurring) (citing Vices of the Political System of the United States, in James

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Madison: Writings 69, 71, } 5 [J. Rakove ed. 1999]) (As a result of the “want of concert in matters where common interest requires it,” the “national dignity, interest, and revenue [have] suffered.”). Health care, historically, has been the province of state regulation, but it has become clear that approach is unworkable. See Br. for Am. Ass’n of People with Disabilities et al. as Amici Curiae at 9, NFIB v. Sebelius, 567 U.S. 519 (2012) (No. 11–398) (describing several states’ failed attempts at health care market regulation in the 1990s); see also Br. for Gov’t of Wash. Christine Gregoire as Amicus Curiae at 11–14, NFIB v. Sebelius, 567 U.S. 519 (2012) (No. 11–398) (describing health insurance “death spiral” that states experienced enacting insurance ratemaking reforms). And, thus, federal response is warranted. As Justice Ginsburg asserted, “States cannot resolve the problem of the uninsured on their own.” NFIB, 567 U.S at 594. State variation is a hallmark of federalism, but, in this case, states that offer more generous public benefits and consumer protections for health insurance risk attracting in-state migration from less generous states. Absorbing those additional individuals comes at a cost to the state and may require tax increases, which further encourages individuals and businesses to leave. Thus, federal response “was needed to overcome this collective-action impasse.” NFIB, 567 U.S at 595. Addressing the health insurance crisis is well within Congress’ power, given the settled authority that the Commerce Clause permits regulation of both the insurance industry and health care services. See, for example, United States v. Se. Underwriters’ Ass’n, 322 U.S. 533, 539 (1944). Indeed, Congress repeatedly has enacted now well-established statutes regulating health care and health insurance markets. In 1945, Congress passed the McCarran-Ferguson Act, 15 U.S.C. §§ 1011–1015, following our decision in South-Eastern Underwriters Ass’n, which held that federal antitrust laws do apply to the business of insurance. McCarran-Ferguson does not actually provide substantive federal regulation of insurance, but it confirms Congress’ authority to regulate in that space, as long as states have not done so. With South-Eastern Underwriters Ass’n and McCarran-Ferguson both allowing federal regulation of health insurance, Congress has repeatedly legislated in that space. In 1974, Congress passed the Employee Retirement Income Security Act of 1974 (“ERISA”), 29 U.S.C. §§ 1001 et seq., which regulates employee pension and other benefit plans, including employer-sponsored health plans. As noted above, employer-sponsored plans dominate the private health insurance market and, thus, so too does federal regulation of that market. Congress further regulated employer-sponsored plans with The Health Insurance Portability and Accountability Act of 1996 (“HIPAA”), Pub. L. No. 104-191, 110 Stat. 1936, which protects employees’ health insurance coverage as

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they change jobs by restricting employers’ ability to impose preexisting conditions or lengthy waiting periods. The Genetic Information Nondiscrimination Act of 2008 (“GINA”), 42 U.S.C. §§ 2000ff–2000ff-12, prohibits use of genetic information in employment and insurance, specifically, prohibiting plans from denying coverage or charging higher premiums based on genetic predisposition to disease. The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (“MHPAEA”), Pub. L. No. 110-343, 122 Stat. 3881, prevents employer-group health plans and other health insurance issuers that provide mental health or substance use disorder benefits from imposing less favorable benefit limitations on those benefits than on medical or surgical benefits. Thus, it is clear that Congress repeatedly has exercised its interstate commerce power to regulate health insurance, with particularly broad authority over employer-sponsored plans. The ACA continues in that well-established tradition of federal regulation of the interstate commerce for health insurance, adding requirements for employer-sponsored plans as well as broader federal regulation of the individual and small group market. Health care, and the myriad ways of paying for it, quite clearly is interstate commerce. As Justice Ginsburg observes: “Not only do those without insurance consume a large amount of health care each year; critically, as earlier explained, their inability to pay for a significant portion of that consumption drives up market prices, foists costs on other consumers, and reduces market efficiency and stability.” See NFIB, 567 U.S. at 603 (Ginsburg, J., concurring). Given these far-reaching effects on interstate commerce, the decision to forgo insurance is hardly inconsequential or equivalent to “doing nothing,” NFIB, 567 U.S. at 552 (Roberts, C.J., opinion); it is, instead, an economic decision Congress has the authority to address under the Commerce Clause.” NFIB, 567 U.S. at 603. The plaintiffs do not challenge any of the ACA’s substantive regulations of health insurance, only the ACA’s shared responsibility payment, or individual mandate. In accepting that challenge, the Chief Justice was persuaded by the argument that the individual mandate, rather than regulating existing commercial activity, compels individuals into the market and then purports to regulate them. To him, there is a critical distinction between commercial activity, which Congress can regulate, and inactivity, which it cannot regulate. See NFIB, 567 U.S. at 555–556. The Chief Justice’s suggestion is that the failure to purchase insurance may “[have] a substantial and deleterious effect on interstate commerce” by creating a cost-shifting problem, but it does not regulate existing commercial activity. Instead, he suggests, it regulates inactivity by compelling individuals to become active, which cannot be regulated under the Commerce Clause.

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As Justice Ginsburg’s opinion articulates, that argument is a fallacy given the inevitability of need for health care treatment. At the point that an individual does need health care treatment, then, one way or another, there must be payment for those services and supplies. The individual mandate thus merely regulates the payment for medical treatment, commercial activity already in effect. The Chief Justice’s suggestion that any such inevitability must be more immediate is not well supported by authority. Indeed, the Framers recognized that the country’s needs would shift over time and that Congress possesses authority to respond as needed, not just to immediate crises. “There ought to be a CAPACITY to provide for future contingencies [,] as they may happen; and as these are illimitable in their nature, it is impossible safely to limit that capacity.” The Federalist No. 34, pp. 205, 206 (John Harvard Library ed., 2009) (emphasis in original). To allow Congress a merely reactive, rather than proactive, mode of action would be unduly restrictive. The reality of health care illustrates that point particularly well: If the individual mandate were limited to individuals in immediate need of health care, the insurance system could not function. As discussed more fully below, the ACA espouses a commitment to ending health status discrimination in health insurance; accordingly, delaying the mandate to purchase insurance until the time of immediate medical need would require insurers to carry high-risk individuals without the risk pooling offset of lower-risk individuals, including individuals who are not yet, but inevitably will become, in need of medical care. Even if Congress disavowed the antidiscrimination aim of the ACA, insurers then would charge prohibitively high premiums to individuals seeking coverage at the time of immediate medical need. Both issues in this case – the constitutionality of the individual mandate and Medicaid expansion – call for considering the essential nature of health insurance as a means of providing access to health care. The ACA’s patchwork of strategies to extend insurance coverage through both the commercial market and government health care programs reflects our country’s continued resistance to embracing any sort of universal approach to health care. Congress surely could have gone about health care reform by enacting a comprehensive federal program, akin to the Social Security Act, 42 U.S.C. ch. 7, and its Medicare provisions, id. subch. XVIII. Congress’ power to enact those now-cornerstone public benefits programs is beyond question. But against resistance to enlarging the federal administrative state, Congress instead compromised on an incremental approach, retaining and building on core market-based elements and at the same time extending public coverage to a discrete, particularly needy, group of low-income individuals through Medicaid expansion. To a somewhat higher income group, Congress

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extended government subsidies to assist those individuals’ purchase of private insurance. 26 U.S.C. § 36B (Refundable credit for coverage under a qualified health plan); 42 U.S.C. § 18071 (Reduced cost sharing for individuals enrolling in qualified health plans). Indeed, the suggestion to compel purchase of private health insurance by those who are able to afford it has its origins as a market-driven counterproposal to President Bill Clinton’s failed comprehensive health care reform proposal. Stuart M. Butler, Assuring Affordable Health Care for All Americans, Heritage Found. 1, 5 (1989), [https://perma.cc/4QH6– 7M53] (“Mandate all households to obtain adequate insurance. . . . This mandate is based on two important principles[:]” (1) “that health care protection is a responsibility of individuals, not businesses[,]” and (2) “it assumes that there is an implicit contract between households and society, based on the notion that health insurance is not like other forms of insurance protection.”). Thus, ironically, in hewing to a more conservative, private market approach to expanding health insurance coverage, Congress drew greater constitutional scrutiny than it would have had it enacted a comprehensive, “Medicare for All,” federal health insurance program. Policymakers continue to push for privatization of complex social problems, including health care. See, for example, Martha Albertson Fineman, Feminist Legal Theory, 13 J. Gender, Soc. Pol’y, & L. 13, 21 n. 40 (2005) (citing Personal Responsibility and Work Opportunity Reconciliation Act of 1996, 42 U.S.C. § 608, as an example, “seeking to solve teenage parenting concerns by requiring denial of public assistance to teenage parents unless they live with their own parents”). Economic models of efficiency and utility prevail, see id. at 20; individuals and firms are motivated to maximize their own welfare, with the belief that such conduct will increase overall welfare for society. The belief is that private actors, rather than the government, are the best judges of their own welfare-maximizing desires and strategies. Accordingly, the government has no business telling them how to spend their resources. Applied to health care markets, the suggestion is that those who value that particular product will spend accordingly, and those who do not will place their resources elsewhere. Those who go bare must have prioritized other expenditures. Except for certain select groups, health insurance and health care remain private-market goods and matters of individual responsibility. The ACA encompasses that view by steering individuals to obtain health insurance through the workplace and incentivizing, through penalties and default rules, private firms to take on that arguably public function. The Chief Justice’s decision concluding that the individual mandate exceeded Congress’ power to regulate interstate commerce perpetuates that public-private dichotomy, a distinction that is overdrawn in our national

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politics. Feminist legal scholar Catharine MacKinnon once famously declared: “the personal is the political,” Catharine A. MacKinnon, Toward a Feminist Theory of the State 95 (1989), meaning that women’s issues and problems are not hers alone but must be addressed by society as a whole. It would require breaking down the public law-private law distinction for law and policymakers to see beyond the traditional view of health insurance as a commercial product providing individual financial protection against risk and instead to view it as effecting a risk pool premised on cross-subsidization of the health care “haves” by the health care “have-nots.” The ACA achieved that shift in perception, but obliquely and incompletely. By compelling individuals to obtain health insurance, even before they have an immediate health care need, the ACA pulls some presently healthy individuals into the risk pool, along with individuals already in need of medical care. The Chief Justice ultimately upholds the individual mandate as a “tax,” constitutionally enacted under Congress’ enumerated power to “lay and collect Taxes.” U.S. Const. art. I, § 8, cl. 1, NFIB, 567 U.S. at 561; that approach does not require recognizing any collective responsibility for health or refocusing of the welfarist frame. While taxes, even when intended to affect individual behavior (here, by incentivizing the purchase of health insurance as a way to avoid the tax), intrude somewhat on individual autonomy, such laws are well accepted as limited intrusions, as long as they do not cross the line of becoming penalties. See, for example, United States v. Butler, 297 U.S. 1 (1936); Bailey v. Drexel Furniture Co. (Child Labor Tax Case), 259 U.S. 20 (1922). Despite Congress’ explicit use of the word “penalty,” 26 U.S.C. §§ 5000A(b), (g)(2) (describing the “[s]hared responsibility payment” imposed on those who forgo health insurance not as a “tax,” but as a “penalty”), the Chief Justice concludes that the law lacks the hallmarks of a penalty for constitutional purposes, and instead operates as a tax. Words matter to the Chief Justice on other occasions, see, for example, Dep’t of Homeland Sec. v. Maclean, 135 S. Ct. 913, 919 (2015) (“Congress generally acts intentionally when it uses particular language in one section of a statute but omits it in another.”), including with respect to the ACA. NFIB, 567 U.S. at 543–544. But, here, the Chief Justice elided both Congress’ “penalty” label as well as, more tellingly, its “shared responsibility payment” label. Note the dictionary definitions: shared – “used, done, belonging to, or experienced by two or more individuals,” Merriam-Webster, and responsibility – “having a duty to deal with something.” Oxford Dictionaries. Those words indicate Congress’ intention and understanding that health care is a collective concern, requiring a collective response. The Court simply did not parse that text or acknowledge that congressional intent.

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ii The individual mandate also is constitutionally within Congress’ power to regulate interstate commerce as a core component of a civil rights law, similar to other such laws enacted under the commerce power. The Commerce Clause has been consistently understood to authorize Congress to address the impact on interstate commerce resulting from discriminatory exclusions and to promote equality and inclusion. As discussed above, the ACA aims to extend health insurance coverage to more Americans and, in so doing, all but eliminates health status discrimination in health insurance underwriting and ratemaking. The ACA also aims to address other types of discrimination, correcting a wide range of practices that historically disadvantage women. In short, the ACA was widely understood as an antidiscrimination statute. See, for example, 145 Cong. Rec. H8105 (July 15, 2009) (statement of Rep. Edward Perlmutter, suggesting that insurers’ refusal to provide coverage to his epileptic daughter is “probably unconstitutional under the Fourteenth Amendment to the United States Constitution”); 145 Cong. Rec. 8881 (July 28, 2009) (statement of Rep. Steven Kagen, stating: “Isn’t it a fact that we all agree that it’s time to end discrimination in health care where insurance companies are allowed to discriminate against you because of a preexisting condition? I think it’s time. We secured equal treatment at the lunch counter 50-some years ago; and this year, we’re going to come to some agreement here in the House to end the discrimination in health care . . . .”). The ACA expressly extends existing federal civil rights laws addressing discrimination on the basis of race, color, national origin, sex, age, or disability. 42 U.S.C. § 18116 (expressly incorporating Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, Section 504 of the Rehabilitation Act of 1973, and the Age Discrimination Act of 1975). Section 1557 prohibits discrimination on those bases in all plans offered on the health insurance exchanges and all health care programs or activities that the US Department of Health and Human Services funds or administers. In addition to extending existing civil rights law to health insurance and health care, the ACA adds a number of other provisions aimed at correcting long-standing discriminatory practices, particularly against women. Those provisions, which are made possible by the individual mandate, are well within Congress’ commerce power. A Several prior federal laws recognize that unequal treatment of individuals, especially on the basis of sex, has a significant economic impact that calls for a

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federal response. See, for example, Civil Rights Act of 1964, Pub. L. No. 88-352, 78 Stat. 241; Equal Pay Act of 1963, Pub. L. No. 88-38, 77 Stat. 56 (“Congress hereby finds that the existence . . . of wage differentials based on sex . . . depresses wages and living standards for employees necessary for their healthy and efficiency; . . . prevents the maximum utilization of the available labor resources; . . . tends to cause labor disputes, thereby burdening, affecting, and obstructing commerce; . . . burdens commerce and the free flow of goods in commerce . . . .”); Family and Medical Leave Act, Pub. L. No. 103-3, 107 Stat. 6 (1993) (stating that one of its purposes is to “balance the demands of the workplace with the needs of families” and to discourage employment discrimination on the basis of sex, which thus promote the stability of the economy). These economic consequences require confronting inequality and discrimination. This Court and other federal courts have repeatedly recognized that discrimination impairing individuals’ ability to participate in society affects interstate commerce. See Heart of Atlanta, 379 U.S. at 257 (noting “overwhelming evidence of the disruptive effect that racial discrimination has had on commercial intercourse”); United States v. Virginia, 518 U.S. 515, 532 (1996) (“[T]he Court has repeatedly recognized that neither federal nor state government acts compatibly with the equal protection principle when a law or official policy denies to women, simply because they are women, full citizenship stature – equal opportunity to aspire, achieve, participate in and contribute to society based on their individual talents and capacities.”); see also United States v. Allen, 341 F.3d 870, 881 (9th Cir. 2003) (upholding federal hate crimes legislation under the Commerce Clause); Groome Reg. Ltd. v. Parish of Jefferson, 234 F.3d 192 (5th Cir. 2000) (upholding the Fair Housing Amendments Act (FHAA) and emphasizing the “strong tradition of civil rights enforced through the Commerce Clause . . . we have long recognized the broadly defined ‘economic’ aspect of discrimination”). The ACA’s provisions addressing long-standing discrimination in health insurance and health care, a critical pillar of which is the individual mandate, are in keeping with the recognition that inequality disrupts commerce. B A major purpose of ACA is to confront discrimination in health insurance and health care. The individual mandate facilitates that objective by making private health insurance more available and affordable, especially for women. Those aims are particularly significant as women are disproportionately poor, uninsured, and struggling with medical debt. See Elizabeth Warren et al.,

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Medical Problems and Bankruptcy Filings, Norton’s Bankr. Adviser 1, 10 (2000) (noting that “the number of women filing alone who identify a medical reason for their bankruptcies is nearly double that of men filing alone”). The individual mandate is critical to that strategy by bringing most Americans under a health plan and into the insurance risk pool. By requiring insurers to provide coverage to all who seek it, regardless of health status, it remedies longstanding practices of refusing to sell insurance to women with “preexisting conditions” such as pregnancy, previous cesarean section, or history of having survived domestic abuse. Br. of the Nat’l Women’s L. Ctr. et al. as Amici Curiae Supporting Petitioner on the Minimum Coverage Provision at 2, NFIB v. Sebelius, 567 U.S. 519 (2012) (No. 11-398); see, for example, What Women Want: Equal Health Care for Equal Premiums: Hearing Before the S. Comm. on Health, Education, Labor, and Pensions, 111th Cong. 3 (2009) (statement of Marcia D. Greenberger, President, National Women’s Law Center), [https://perma.cc/9K3U-DBSU] (stating that “simply having had a Cesarean section is grounds enough for insurance companies to reject a woman’s application”). These guaranteed issue and community rating provisions of the ACA, 42 U.S.C. §§ 300gg–1, 300gg–3, 300gg–4(a), function because of the broader, more inclusive risk pool that the individual mandate effects. See Hearings before the House Ways and Means Committee, 111th Cong., 1st Sess., 10, 13 (2009) (statement of Uwe Reinhardt) (“[I]mposition of community-rated premiums and guaranteed issue on a market of competing private health insurers will inexorably drive that market into extinction, unless these two features are coupled with . . . a mandate on individual[s] to be insured.”); see NFIB, 567 U.S. at 597. In other respects, the ACA explicitly targets practices that discriminate against or disadvantage women. For one, the ACA makes gender rating illegal nationwide in both the individual and small group markets. See Pub. L. No. 111-148, § 1201. It also makes maternity coverage universal, including maternity and newborn care in the package of ten “essential health benefits” (“EHB”). Pub. L. No. 11– 148, § 1302(b)(D). The EHB package also includes “first dollar” coverage, without copayments or coinsurance, for preventive care, which includes essential benefits for women, such as Pap tests, mammograms, and family planning. See H.R. Rep. 111– 299(III) at 104 (2009) (describing intent to require EHB package to “include the full range of medical services for women’s unique health needs, at all stages of life, including.., preventive screenings such as mammograms, annual gynecological exams, diagnostic, routine care, and recommended treatments”); see, for example, 155 Cong. Rec. S12027 (daily ed. Dec. 1, 2009) (statement of Sen. Gillibrand) (“With Senator Mikulski’s amendment, even more preventive screening will be covered,

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including for postpartum depression, domestic violence, and family planning.”). Moreover, health plans will no longer be permitted to require prior approval for women seeking obstetric or gynecological care. 29 CFR § 2590.715-2719A(a)(3). The law also supports nursing mothers, requiring employers with more than fifty employees to provide break times and private locations other than bathrooms for employees to express breast milk. 29 U.S.C. § 207(r)(1)(A). These various provisions evidence the ACA’s design and intent as a civil rights law that addresses historical discrimination, especially against women. The importance of the ACA to providing access to health insurance and health care, and ending historical discriminatory practices, is quite evident in the provisions described above. Characterizing the ACA as a civil rights law offers an additional justification for the constitutionality of the individual mandate, beyond the economic justifications that predominate the Chief Justice’s opinion and Justice Ginsburg’s concurrence.

iii I dissent from the Chief Justice’s decision in Part IV on the issue of the constitutionality of the ACA’s expansion of Medicaid and write separately from Justice Ginsburg, first, to further explain the Chief Justice’s errors in characterizing the expansion as a new program, rather than an amendment to an existing program. Second, I disagree with both the Chief Justice and Justice Ginsburg that any unconstitutionality with the ACA’s Medicaid expansion can be remedied by applying the Medicaid Act’s statutory penalty for state noncompliance to only part of the overall program. A Medicaid, the national health insurance program for low-income people, plays a critical role in providing health coverage for women. Women are more likely to be poor, and thus Medicaid disproportionately benefits them. See Sarah Collins et al., Realizing Health Reforms’ Potential: Women and the Affordable Care Act of 2010, Commonwealth Fund (July 30, 2010), www.commonwealthfund.org/publications/issue-briefs/2010/jul/realizing-healthreforms-potential-women-and-affordable-care-act; see also H.R. Rep. 111-388, at 91 (2009). Even before the ACA’s expansion, women comprised about threequarters of the program’s nonelderly adult beneficiaries, and more than one in ten women received coverage through Medicaid. See Kaiser Family Foundation, Women’s Health Insurance Coverage 1 (2011). An additional 8.4

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million women became newly eligible for Medicaid as a result of the ACA. Br. of Nat’l Women’s L. Ctr. et al. as Amici Curiae Supporting Petitioner on the Minimum Coverage Provision at 19, NFIB v. Sebelius, 567 U.S. 519 (2012) (No. 11-398) (citing Sarah Collins et al., Realizing Health Reforms’ Potential: Women and the Affordable Care Act of 2010, Commonwealth Fund [July 30, 2010]). As a result of the Chief Justice’s decision, those women and other newly eligible individuals may effectively be denied access to any affordable health insurance coverage option. 1 The individual mandate, discussed in Part I of this opinion, derives from Congress’ long-standing authority to regulate the commercial health insurance market. As another component of the ACA’s design to bring health insurance coverage to most Americans, Congress expanded eligibility for an existing public insurance program, namely, Medicaid. Congress enacted the Medicaid statute in 1965, at the same time as Medicare, Social Security Amendments of 1965 § 121(a), Pub. L. No. 89-97, 79 Stat. 286, has always covered lower income individuals with health care needs. See S. Rep. No. 404, 89th Cong., 1st Sess., pt. 1, p. 9 (1965); see also § 121(a), 79 Stat. 343 (noting that the purpose of Medicaid is to enable States “to furnish . . . medical assistance on behalf of [certain persons] whose income and resources are insufficient to meet the costs of necessary medical services”). The ACA expanded that core definition to include all low-income adults earning less than 133% of federal poverty level, irrespective of other “categories” of eligibility. See 42 U.S.C. § 1396a(a)(10)(A)(i)(VIII) (2006 & Supp. IV). While Medicare is a fully federal public insurance program, Medicaid is jointly funded and administered by the federal government and the states. 42 U.S.C. § 1396a. States elect whether to participate and retain considerable flexibility in the state plan design. Id. As long as the state plan complies with broad federal requirements, or individually negotiated federal waivers, participating states receive a percentage-on-the-dollar federal match for every state dollar spent. 42 U.S.C. §§ 1396b, 1396(c). Since the mid-1980s, all fifty states have participated in the Medicaid program. See Christie Provost & Paul Hughes, Medicaid: 35 Years of Service, 22 Health Care Fin. Rev. 141 (2000). The federal spending power permits Congress to define the contours of programs financed with federal funds, which basic cooperative federalism design this Court has never doubted. See, for example, Pennhurst State Sch. & Hosp. v. Halderman, 451 U.S. 1 (1981).

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Nothing about the ACA changed the essential arrangement, purpose, or design of the Medicaid program. Moreover, the program has not been static over the years but has been amended and expanded on numerous occasions – more than fifty times since 1965 by Justice Ginsburg’s count. NFIB, 567 U.S. at 627. The Chief Justice, however, held that this particular amendment was unconstitutionally coercive because states are required to cover the expansion population on pain of losing their federal matching dollars for their existing Medicaid beneficiaries. That potential has been a feature of the Medicaid program since its inception and with each subsequent amendment. The relationship between the federal government and states through the Medicaid program has been characterized as “much in the nature of a contract,” Barnes v. Gorman, 536 U.S. 181 (2002) (quoting Pennhurst State Sch. & Hosp., 451 U.S. at 1), and here the contract specified the penalty for noncompliance clearly to all parties. In reality, the Secretary has never once exercised this “nuclear option” of withdrawing all of a state’s federal Medicaid dollars; rather, more typically, the state agrees to a plan for curing the noncompliance or otherwise negotiates an arrangement with the Secretary. 42 U.S.C. §§ 1396(c), 1396(n) (providing the Secretary of Health and Human Services the power to discretionarily waive certain requirements under Subchapter XIX for States); see also Julia Bienstock, Note, Administrative Oversight of State Medicaid Payment Policies: Giving Teeth to the Equal Access Provision, 39 Fordham Urb. L.J. 805, 841 (2012) (citing Mark H Gallant, Federal Remedies for Noncompliance by States, 2 Health L. Prac. Guide § 27:7 [2011]). Congress’ repeated amendment of Medicaid over the years includes other dramatic expansions, particularly in the 1980s and 1990s. Originally, Medicaid eligibility was tied to cash assistance, either the federal Supplemental Security Income (SSI) program, or Aid to Families with Dependent Children (AFDC), and later Temporary Assistance for Needy Families (TANF). Accordingly, the program singled out the poor aged, blind, and people with disabilities and certain parents and children. In the 1980s, Congress extended eligibility to pregnant women with family incomes up to 133% of the federal poverty level, children up to age six at the same income levels, and children aged six to eighteen with family incomes up to 100% of the poverty level. See 42 U.S.C. §§ 1396a(a)(10)(A)(i), 1396a(l); Medicare Catastrophic Coverage Act of 1988, § 302, 102 Stat. 750; Omnibus Budget Reconciliation Act of 1989, § 6401, 103 Stat. 2258; Omnibus Budget Reconciliation Act of 1990, § 4601, 104 Stat. 1388–166; see also Lessons from the Medicaid Expansions for Children and Pregnant Women: Implications for Current Policy: Testimony before the Subcomm. on Health of the H. Comm. on Ways and Means, 105th Cong. (1997) (statement of Lisa Dubay & Genevive M. Kenney, Senior Fellows,

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Urban Institute). During that same time period, Congress also required states to make additional disproportionate share hospital (DSH) payments to hospitals that serve especially large numbers of Medicaid and other low-income individuals. Omnibus Budget Reconciliation Act of 1981 (OBRA-81), 95 Stat. 357. In the 1990s, Congress severed Medicaid eligibility from eligibility for cash assistance under AFDC and TANF, establishing a new mandatory Medicaid eligibility group for low-income households. Personal Responsibility and Work Opportunities Act (PRWOA) of 1996, 110 Stat. 2105. In each case, states’ continued acceptance of federal Medicaid funding was contingent on including those new beneficiaries and requirements. In no case were these changes deemed unconstitutionally coercive of states. Nevertheless, the Chief Justice deems the ACA’s amendments to the Medicaid program to cross the line where “pressure turns into compulsion.” Steward Mach. Co. v. Davis, 301 U.S. 548, 590 (1937). To reach that conclusion, the Chief Justice frames the ACA’s Medicaid expansion as not merely another in consistent series of statutory amendments to eligibility and coverage over the program’s forty-five-year history, but as an entirely new program. Thus, the Chief Justice maintains, Congress could not condition state’s federal matching dollars for participation in one program (“old” Medicaid) on their agreement to participate in a different program (“new” Medicaid). Based on that erroneous characterization, the Chief Justice held that the ACA’s expansion of Medicaid coverage to low-income individuals below 133% of federal poverty level was unduly coercive and, therefore, violated the conditional spending power. 567 U.S. at 585 (“What Congress is not free to do is penalize States that choose not to participate in that new program by taking away their existing Medicaid funding.”). Assuming without deciding that Congress cannot condition state funding for implementing one federal program on their agreement to implement a different and unrelated federal program, that scenario does not accurately describe the ACA’s Medicaid expansion. Rather, the expansion is one in a series of amendments to the nearly five-decade-old Medicaid program, which amendments have repeatedly altered and expanded the program’s benefits, eligibility, and other features. Congressional authority to amend, without qualification on the nature or extent of the amendments, has been expressly provided in the Medicaid statute itself, from the time of enactment. See 46 U.S.C. § 1304 (expressly reserving “[t]he right to alter, amend, or repeal any provision” of the Medicaid statute). Notwithstanding Congress’ clear statutory authority to amend the program and penalize noncompliance with program requirements, and the long

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history of Medicaid amendments to expand eligibility, the Chief Justice here, for the first time, invokes the coercion analysis to strike down an act of Congress as exceeding the federal spending power. The only two previous decisions by this Court mentioning the spending power coercion doctrine found it inapplicable and upheld the federal laws in question – the unemployment-compensation provisions of the Social Security Act of 1935 in Steward Machine Co. v. Davis, 301 U.S. at 585–593, and the drinking age condition on highway funds in South Dakota v. Dole, 483 U.S. 203, 212 (1987). In each case, the Court recognized the theoretical possibility of a federal spending program unconstitutionally coercing states but found no coercion on the facts presented. Justice Cardozo in Steward Machine warned that enforcing the coercion doctrine would “plunge the law in[to] endless difficulties.” 301 U.S. at 589–590. Nevertheless, the Chief Justice here held that the expansion of Medicaid to include a new category of beneficiaries was unconstitutionally coercive because the Secretary theoretically could withdraw all of a state’s federal Medicaid funding in response to a state’s failure to comply with the ACA’s Medicaid provisions. To be sure, that possibility – loss of federal funding – has always existed with the Medicaid program, pursuant to 42 U.S.C. § 1396c, including with multiple prior amendments to and expansions of the program that have not been held unconstitutional. For reasons that remain unclear, the Chief Justice deemed this particular change to the program to render it a new federal program, rather than an amendment to an existing federal program. The opinion invites numerous interpretive questions and provides little guidance for answering them. At what point does a statutory amendment become too much? How related do the amendments have to be to the original statutory design? How much money must be on the line? And is the critical inquiry a dollar quantum, the percentage of the state’s budget that the federal grant represents, or the percentage of the particular state program funding that the federal grant represents? Is there some limit on the size of the carrot that Congress can offer in the first place? That is, as Justice Ginsburg noted, Congress, without constitutional quibble, could have fully repealed the Medicaid Act and reenacted it, with the expanded population included. At that point, states would still be left with the choice of leaving a considerable sum of money on the table, but would that choice whether to enact the program be deemed coercive? In sum, the Chief Justice’s characterization of preACA Medicaid and post-ACA Medicaid as two separate and unrelated programs is both inaccurate and inapt.

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2 In addition to its inaccuracy, the Chief Justice’s new-old characterization is an artifice and evidences a fundamental discomfort with extending public assistance to the able-bodied who otherwise seem capable of providing for themselves on the private market. See Sara Rosenbaum, Anne Markus & Colleen Sonosky, Public Health Insurance Design for Children: The Evolution from Medicaid to SCHIP, 1 J. Health & Biomedical L. 1, 7–8 (2004); Sandra Tanenbaum, Medicaid Eligibility Policy in the 1980s: Medical Utilitarianism and the “Deserving” Poor, 20 J. Health Pol., Pol’y & L. 933, 933–934 (1995). That view is especially harmful to women, restricting their eligibility for public assistance to certain roles – child bearer, widow, and mother of a needy child. Medicaid expansion, like the individual mandate, is part of the ACA’s posture as a civil rights law that addresses historical disadvantages women face in obtaining health insurance and health care. With the ACA’s amendments to Medicaid, Congress brought formal equality to the program, extending benefits based solely on income, without regard to age, gender, disability, or other individualized criteria. As noted above, Medicaid is an especially important source of health insurance coverage for women. Moreover, women are especially likely to suffer not only physically but financially due to lack of health insurance. See H.R. Rep. 111-388 at 84 (37% of women, compared to 29% of men, report problems paying medical bills); id. at 70 (over half of medical bankruptcies impact a woman); Elizabeth Warren et al., Medical Problems and Bankruptcy Filings, Norton’s Bankr. Adviser 1, 10 (2000) (noting that “the number of women filing alone who identify a medical reason for their bankruptcies is nearly double that of men filing alone”). Extending Medicaid based on the sole criterion of indigency, rather than on other categories of eligibility, corrects the association of welfare with weakness and dependency. According to the Chief Justice, “old” Medicaid drew the line at the “neediest among us;” his opinion notes that “[t]he original program was designed to cover medical services for four particular categories of the needy: the disabled, the blind, the elderly, and needy families with dependent children,” and further urged that “[p]revious amendments to Medicaid eligibility merely altered and expanded the boundaries of these categories.” NFIB, 567 U.S. at 583 (citing 42 U.S.C. § 1396a(a)(10)). Note that those categories were limited to those unable to work due to age (either too young or too old), disability, maternity, or, in much more limited cases, adults caring for minor dependents. The Chief Justice asserts that by covering all low-income, nonelderly individuals up to 133% of the federal poverty line, Medicaid no longer

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“care[s] for the neediest among us.” Id. This is the fatal “shift in kind, not merely degree,” id., on which the Chief Justice justifies striking down this particular amendment to the Medicaid program. The implicit assumption behind the Chief Justice’s characterization is that a person is “needy” and thus deserving of government assistance if she cannot provide for herself due to being afflicted with a particular disability or condition but no longer is “needy” if she merely is poor. As Justice Ginsburg observed, surely an individual earning $14,856 per year (133% of the current federal poverty level) is “needy.” Perhaps needy, but the unspoken question seems to be whether she is “deserving” of government assistance. For women, this historical distinction between the deserving and undeserving poor allowed the government to support women who hewed traditional family roles, such as marriage, childbearing, and caretaking, while excluding single adults who failed to secure sustainable income or who “chose” motherhood outside of marriage. See Johana Brenner, Towards a Feminist Perspective on Welfare Reform, 2 Yale J.L. & Feminism 99, 103 (1989). Women who were widowed or caring for injured husbands were especially deserving. Id. At the same time, women who cared for their parents or elderly relatives, or other families, were not eligible because they did not fit within the specified categories. As a result, welfare policy historically fueled a market for lowwaged, semi-skilled caretaker services. Denying public benefits to those who were able to work ensured a steady workforce for those and other low-wage jobs in domestic or other service industries, to the benefit of local economies. Those jobs, however, often came with limited benefits or job security, thus forcing women back into the dependency of marriage. Id. at 103. Extending public benefits to able-bodied yet low-income individuals recognizes the societal value of those services and liberates women – and men – to work in those positions. Public welfare programs have drawn criticism as merely redistributing wealth rather than growing the economy. See, for example, Elisabeth Bumiller, McCain Embraces a G.O.P. Theme: No More Taxes, N.Y. Times (Oct. 29, 2008), [https://perma.cc/9AJC-ZM4S]. But, as feminist scholar, Martha McClusky has asserted, “[f]eminist policies such as paid family leave, public childcare, and government health insurance are no more ‘redistributive’ than conservative-backed policies of economic development subsidies, trade regulation, or intellectual property rights.” Martha McClusky, Transcending the Boundaries of Law: Generations of Feminism and Legal Theory 357 (Martha Albertson Fineman ed., 2011). Extending benefits to those who engage in caretaking – even if outside of marriage – recognizes the value of those roles to society and the economy.

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Nothing in the history of Medicaid limits Congress’ conception of the “neediest among us” to the traditional categories of eligibility. Indeed, as noted above, Congress formally severed Medicaid eligibility from eligibility for AFDC and TANF. With the ACA, Congress again, under its statutory authority to amend, untethered Medicaid from constrained categories that no longer accurately capture the program’s aim. Defining “need” by reference to income does not create a new program but rather recognizes evolving views of the various ways that individuals participate in and contribute to society. B The first part of my separate opinion on Medicaid tracks and buttresses Justice Ginsburg’s arguments regarding the errors in the Chief Justice’s conclusion that Medicaid expansion is unconstitutionally coercive. Conceding defeat on that point, Justice Ginsburg then joins the Chief Justice on the question of the remedy. Rather than striking down Medicaid expansion in its entirety, the Chief Justice allows states the option to expand, as the statute provides, or to continue limiting Medicaid benefits to the traditional categories of eligibility. In either case, the state’s federal funding is conditional on compliance with the degree of participation it elects. That is, a state that declines to extend eligibility to low-income adults outside of the categorically eligible will not lose federal funding for those existing Medicaid beneficiaries. At the same time, a state that opts into expansion is required to comply with all federal requirements – both “old” and “new” Medicaid, to use the Chief Justice’s labels – to receive federal funding. The dissenters would have struck down the ACA in its entirety upon finding both the individual mandate and Medicaid expansion unconstitutional. The Chief Justice, however, concluded that the flawed Medicaid expansion could be severed, allowing the rest of the statute to stand. It bears emphasis that the Chief Justice applies the Medicaid Act’s severability provision, 42 U.S.C. § 1303, to remedy the constitutional deficiency. Applying a long-standing provision of “old” Medicaid to the Chief Justice’s recharacterized “new” Medicaid expansion program, belies the apparent separateness of the programs. In any event, while I applaud the preservation of the remainder of the statute, I maintain that the severability remedy is a second-best solution. Allowing states to opt in or out of core conception of “need” for public insurance risks eroding the nationwide regulation of health care markets, already recognized as a valid exercise of congressional authority in the discussion of the individual mandate above.

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The Chief Justice’s remedy to the unconstitutionality of Medicaid expansion under the ACA is to allow states the option to expand their state programs to cover the new population of beneficiaries, thereby gleaning the much more generous federal match (including full federal coverage for the first three years), 42 U.S.C. § 1396d(y)(1), or to decline to expand coverage and continue providing Medicaid to the existing categories of eligibility. NFIB, 567 U.S. at 585. While admittedly preferable to striking down the entire statute, the Chief Justice’s approach fragments core elements of the Medicaid program and the ACA’s overall design. State diversity and experimentation is a hallmark of programs implemented through the conditional spending power. See Oregon v. Ice, 555 U.S. 160 (2009); United States v. Lopez, 514 U.S. 549 (1995) (Kennedy, J., concurring) (“[T]he States may perform their role as laboratories for experimentation to devise various solutions where the best solution is far from clear.”); New State Ice Co. v. Liebmann, 285 U.S. 262 (1932) (Brandeis, J., dissenting) (“It is one of the happy incidents of the federal system that a single courageous State may, if its citizens choose, serve as a laboratory; and try novel social and economic experiments without risk to the rest of the country.”); see also Bond v. United States, 564 U.S. 211, 221, (2011) (noting that deference to state lawmaking “allows local policies ‘more sensitive to the diverse needs of a heterogeneous society,’ permits ‘innovation and experimentation,’ enables greater citizen ‘involvement in democratic processes,’ and makes government ‘more responsive by putting the States in competition for a mobile citizenry.’” (quoting Gregory v. Ashcroft, 501 U.S. 452, 458 [1991]). While those federalism policies are laudable in the abstract, applied here, the Chief Justice’s approach likely will deny significant numbers of individuals access to any form of health insurance. Women will be especially impacted by the coverage gap that optional Medicaid expansion promises to leave in its wake. As noted above, Medicaid is an especially important source of coverage for women; more than half of the newly eligible Medicaid population are women; and women are especially at risk for medical bankruptcy. Having enacted the ACA, Congress recognized that increasing access to meaningful, affordable health insurance is a nationwide issue calling for a nationwide solution. The Chief Justice’s Medicaid holding, however, fragments the solution and exacerbates the problems that necessitated congressional response in the first place. In states that opt out of Medicaid expansion, those individuals who would have been newly eligible under the statute as enacted, but who are denied coverage by the state’s decision to decline expansion, likely will have no affordable option for coverage. It is hard to image a state opting to cover their expansion population entirely with state dollars, given the dire financial effects

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outlined by the plaintiffs here in opposition to the expansion. Thus, public insurance almost surely would be unavailable. A subset of the expansion population denied coverage might qualify for federal subsidies to purchase private insurance. Namely, individuals earning between 100% and 400% of federal poverty level may be eligible for federal premium assistance and/or cost sharing reduction subsidies to help them purchase private insurance through the exchanges. See 42 U.S.C. § 18071 (including cost sharing reduction payments to individuals with household incomes between 100% and 250% of federal poverty level); 26 U.S.C. § 36B (providing premium assistance tax credit for purchase of qualified health plan for individuals with household incomes between 100% and 400% of federal poverty level). But those below 100% of federal poverty level would qualify for neither subsidy nor, in opt-out states, Medicaid. Any private insurance plan, if available, would almost surely be unaffordable. Given that Medicaid operates in the nature of a contract between the federal government and the participating states, it is easy to imagine that states will strike individual deals with the federal government, further fragmenting the program design. Medicaid allows waivers of federal requirements, if federally approved. 42 U.S.C. § 1315(a) (Demonstration Projects); 42 CFR subpart G (Section 1115 Waivers). Assuming those “old” Medicaid options apply to “new” Medicaid, it is conceivable that states might request waivers to expand to only a portion of the newly eligible population (such as those under 100% of federal poverty level who are ineligible for government subsidies for exchange plans); borrow a page from TANF, 42 U.S.C. § 607, and impose additional requirements (such as work activities); follow the model of many private employers, Amy Rossi, Wellness Programs on the Rise, 7 Biotechnology Healthcare 29–30 (2010), and encourage wellness program participation; or combine a Medicaid waiver with the ACA’s provision for state waiver of other new federal requirements. 42 U.S.C. § 18052 (Waiver for State Innovation). The array of responses that states may propose as they evaluate whether to expand Medicaid promises to be a study in federalism but a failure of social justice. The issue will be a political lightning rod, creating tiers of beneficiaries, contrary to the Medicaid program’s long-standing commitment to equality. See, for example, 42 U.S.C. § 1396a(a)(1) (providing that a “State plan for medical assistance must . . . be in effect in all political subdivisions of the State. . .” [statewideness requirement]). Work and wellness requirements are significant policy choices that Congress did not include in the ACA’s Medicaid provisions when crafting a federal response to the nationwide problem of lack of access to health insurance. The Chief Justice’s optional Medicaid expansion remedy erodes the congressional findings and aim

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underlying the ACA and invites stratification and stigmatization of public insurance beneficiaries, further undermining the law’s civil rights objectives. *** For the reasons stated, I agree with the Chief Justice that the judgment of the Court of Appeals for the Eleventh Circuit that the individual mandate is unconstitutional should be reversed. In my view, the provision is valid under both the commerce and taxing powers. Further, I would affirm the Eleventh Circuit’s decision that the Medicaid expansion is within Congress’ spending power.

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13 Commentary on Means v. United States Conference of Catholic Bishops maya manian

introduction Tamesha Means was eighteen weeks pregnant when she rushed to her local hospital, suffering from a miscarriage. Similar to many women living outside of major metropolitan areas, the only hospital within a reasonable distance of Means’ residence in Muskegon, Michigan was a Catholic-owned hospital, Mercy Health Partners (MHP).1 Instead of giving her accurate information and providing treatment consistent with the appropriate medical standard of care for miscarriage management, MHP sent Means home repeatedly – despite evidence that she was sick from a potentially life-threatening infection – until she finally miscarried at the hospital on her third visit. As Means later explained: They sent me home with no answers. I was begging, ‘You guys have to help me. I am in a lot of pain. I can’t keep going home like this. Please help me.’ After we were sent home the second time, I knew the baby wasn’t going to make it. I felt alone. I can’t even put into words. I felt confused, in pain and devastated.2

An executive at the hospital later explained that the hospital’s mistreatment of Means was mandated by religious policies governing Catholic hospitals’ provision of health care.3 Means ultimately sued the Catholic entities responsible for issuing the religious directives that limit reproductive and other health care at Catholic

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Kira Sheperd et al., Bearing Faith: The Limits of Catholic Health Care for Women of Color 27 (2018). See Nina Martin, In Healthcare Suit against Catholic Bishops, the Specter of an Early Defeat, Pro Publica (Mar. 20, 2014), www.propublica.org/article/in-healthcare-suit-against-catholicbishops-the-specter-of-an-early-defeat. Means v. U.S. Conference of Catholic Bishops, 836 F.3d 643, 647 (6th Cir. 2016).

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hospitals. Despite evidence of the mistreatment she endured as a result of the Catholic entities’ health care directives, two federal courts dismissed Means’ lawsuit outright without even proceeding to a trial.4 Among other arguments, the defendants asserted immunity from the suit based on Michigan statutes providing legal protection to hospitals and doctors who refuse to provide abortion care – commonly known as “refusal statutes” or “conscience clauses.”5 Both federal and state refusal laws protect institutions and individuals who refuse to provide reproductive health care and other medical care to which they conscientiously object.6 Refusal laws may shield hospitals and health care providers from liability for their refusal to provide care even if the refusal contravenes accepted medical standards.7 Although some refusal laws and policies claim to protect only conscientious objection to abortion provision, the refusal policies of many privately owned sectarian hospitals impede physicians’ ability to provide a much wider range of health care.8 In particular, pregnant women with emergent conditions, such as miscarriage, face risks to their health due to refusal provisions, as Tamesha Means’ story makes clear. Means v. United States Conference of Catholic Bishops9 sharply illustrates the injuries patients suffer when the law allows religious objections to trump patient health. Moreover, Means also highlights how religious refusals in health care exacerbate health disparities.10 Health care refusals disproportionately impact women, pregnant people, people of color, and LGBTQ+ people seeking a range of health care services.11 Professor Leslie Griffin, writing as Judge Griffin, brings a feminist perspective to bear on the broader 4

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See Means v. U.S. Conference of Catholic Bishops, No. 1:15-CV-353, 2015 WL 3970046 (W.D. Mich. June 30, 2015), aff’d 836 F.3d 643 (6th Cir. 2016). Means, 2015 WL 3970046, at *12. See generally Elizabeth Sepper, Taking Conscience Seriously, 98 Va. L. Rev. 1501, 1503 (2012) (describing and critiquing refusal legislation). See Sepper, supra note 5, at 1503. See id.; Nadia N. Sawicki, The Conscience Defense to Malpractice, 108 Calif. L. Rev. 1255 (2020); Holly Fernandez Lynch, Conflicts of Conscience in Health Care: An Institutional Compromise (2010). See Leslie C. Griffin, Conscience and Emergency Contraception, 6 Hous. J. Health L. & Pol’y 299 (2006) (analyzing claims of conscience-based exemptions to providing emergency contraception). No. 1:15-CV-353, 2015 WL 3970046 (W.D. Mich. June 30, 2015), aff’d 836 F.3d 643, 647 (6th Cir. 2016). See Seema Mohapatra & Lindsay F. Wiley, Feminist Perspectives in Health Law, 47 J. L. Med. & Ethics 103 (2019) (describing feminist critiques that inform analysis of social determinants of health and health disparities along lines of gender, race, and class). See, e.g., Debra B. Stulberg et al., Referrals for Services Prohibited in Catholic Health Care Facilities, 48 Persp. On Sexual & Reprod. Health 111, 116 (2016) (finding that some physicians “had to hide” these referrals for reproductive health care at Catholic hospitals).

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problem of increasingly widespread assertions that objections based on “conscience” entitle health care providers to depart from appropriate standards of medical care and impose harms on vulnerable third parties.12 Unlike the original opinion, Griffin’s feminist judgment recognizes that the entities dictating religiously motivated health care policies bear responsibility for the injuries those policies inflict on unwitting patients. The feminist judgment also ensures equitable access to health care for all patients in ways that have implications far beyond Catholic hospitals. For example, the Trump administration sought to expand “conscience” protection for health care workers across the board, seeking to aggressively implement more than thirty statutory provisions that would limit health care access in the contexts of abortion, sterilization, and assisted suicide, among others.13 The feminist revision of Means not only exposes the harmful impact on patient well-being of sectarian institutions’ medical care restrictions,14 but it also insists that the law more broadly must safeguard the health of patients. While religious freedom remains an important principle, Griffin’s feminist judgment underscores that in any health care setting, freedom of conscience does not justify exemptions from legal and ethical standards of medical care that would inflict harm on patients.

original opinion In Means v. United States Conference of Catholic Bishops, the Sixth Circuit dismissed Means’ tort law claims against the defendants, the US Conference of Catholic Bishops (USCCB), three individuals who served as chair of the Catholic Health Ministries (CHM), and the entities that adopted and enforced the religious policies that impacted Means’ health care.15 The court held that it lacked personal jurisdiction over USCCB and that Means failed to state a claim for negligence under Michigan law against the CHM defendants.16 12

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National Women’s Law Center, Below the Radar: Health Care Provider’s Religious Refusals Can Endanger Pregnant Women’s Lives and Health 7 (2011) (finding that “some doctors do not disclose certain treatment options to their patients” due to religious directives). See New York v. U.S. Dep’t of Health & Hum. Servs., 414 F. Supp. 3d 475 (S.D.N.Y. 2019). Lois Uttley, Sheila Reynertson, Lorraine Kenny, & Louise Melling, Miscarriage of Medicine: The Growth of Catholic Hospitals and the Threat to Reproductive Health Care (2013). Means v. U.S. Conference of Catholic Bishops, 836 F.3d 643, 646 (6th Cir. 2016). See id. at 646. The court also held that the USCCB did not waive its personal jurisdiction defense and the district court did not abuse its discretion in transferring venue to the Western District of Michigan. See id. at 648–652.

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The original opinion described the health risks and physical and emotional harms that Means suffered in detail, but it ultimately denied her a remedy for her injuries. On December 1, 2010, Means went into labor at eighteen weeks of pregnancy, well before viability.17 Means sought treatment at MHP, “the only hospital within thirty minutes of her residence.”18 The treating physicians at MHP diagnosed Means with preterm premature rupture of membranes, a condition that results in a miscarriage.19 At the time Means sought treatment at the hospital, “the unborn baby still had a heartbeat.”20 The court uses the term “unborn baby,” as does Ms. Means in her later descriptions of her ordeal.21 The amicus brief of obstetrician-gynecologists in the Means case uses the term “fetus” and “pregnancy termination” to describe miscarriage management and abortion care.22 This commentary uses the terminology of the court and the plaintiff in describing the Means case, recognizing that choice of terminology in this context is highly politicized.23 In recounting Means’ experience at the hospital, the Sixth Circuit described the mistreatment that Means endured in detail: Despite the gravity of Means’s condition, which created serious risks to herself and her baby, Mercy Health sent her home with some pain medication and told her to return the following week for her regularly scheduled appointment. Although Means was told that her baby was not yet viable, no one told her that the baby would likely not survive or that continuing her pregnancy could endanger her own health. Mercy Health did not give Means the option of artificially completing the miscarriage or terminating the pregnancy.24

Means’ saga did not end there, but it continued with two more visits to the hospital. As the Sixth Circuit explained, Means returned to the hospital the next morning “with a fever, excruciating pain, and bleeding.”25 Once again, MHP failed to give her additional treatment options, even though Means’ 17

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See id. at 646–647; Br. of Amici Curiae Obstetrician-Gynecologists Supporting PlaintiffAppellant, at 7–8, Means v. U.S. Conference of Catholic Bishops, 836 F.3d 643 (6th Cir. 2016) (noting “there is no chance of neonatal survival” for “such unequivocally previable deliveries”). Means, 863 F.3d at 646. See Br. of Amici Curiae, supra note 18, at 6–9 (explaining medical standards of diagnosis and care for preterm premature rupture of membranes). Means, 836 F.3d at 646. See Martin, supra note 2 (interview with Tamesha Means). See Br. of Amici Curiae, supra note 18. See Katie Watson, Why We Should Stop Using the Term “Elective Abortion,” 20 Am. Med. Assoc. J. of Ethics 1175–1180 (2018). Means, 836 F.3d at 646–647. Id. at 647.

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treating physician suspected she had a serious infection that could “cause infertility and even death.”26 Instead, as soon as Means’ fever decreased, the hospital discharged her and told her to return only if the fever came back or if her contractions worsened.27 Finally, on her third attempt to obtain appropriate care, Means returned to the hospital that same night with extremely painful contractions. The hospital was preparing to discharge her yet again when, shortly after midnight, Means delivered her baby breech. The baby died within three hours, and the pathology report confirmed that Means had two acute bacterial infections at the time she gave birth.28 Despite acknowledging that Means faced serious risks to her health and unnecessarily suffered extended physical and emotional pain, the Sixth Circuit refused to allow Means to pursue her claims for relief against the USCCB and CHM defendants. Two years passed before a public health educator happened to discover medical records regarding Means’ case. The educator was the first person to inform Means that she had suffered substandard medical care due to religious directives. By that time, the statute of limitations had expired for any medical malpractice claims Means might have pursued against the hospital and her treating physicians. Joseph O’Meara, MHP’s Vice President of Mission Services, explained to the public health educator that the hospital’s mistreatment of Means was a result of the ethical guidelines issued by the USCCB.29 The USCCB, a non-profit entity established by the Roman Catholic Bishops of the United States, promulgates and enforces the Ethical and Religious Directives for Catholic Health Care Services (the Directives). The USCCB requires all Catholic hospitals to adopt and comply with the Directives.30 O’Meara stated that “the Directives prohibited the hospital from inducing labor or taking similar action in Means’s situation.”31 Thus, Means sued the USCCB and the CHM defendants on a theory of negligence – rather than malpractice – as the actors responsible for affirmatively adopting and enforcing the religious policies that directed her mistreatment at MHP. Although O’Meara’s statement explicitly linked the hospital’s mistreatment of Means to the USCCB-promulgated Directives, the Sixth Circuit concluded

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Id. Id. Id. Id. See id. at 650 n.5 (“Catholic health care services adopt the Directives as policy, require adherence to them within the institution as a condition for medical privileges and employment, and provide appropriate instruction regarding the Directives for administration . . . .”). Id. at 647.

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that it lacked personal jurisdiction over the USCCB. To establish personal jurisdiction, Means had to satisfy a three-prong test, including proof that the defendant “purposefully avail[ed] himself of the privilege of acting in the forum state or causing a consequence in the forum state.”32 The Sixth Circuit concluded that the USCCB’s actions in mandating the Directives did not amount to purposeful availment of the forum in Michigan. According to the court, USCCB’s connection to Michigan was too attenuated to create personal jurisdiction because all USCCB did was “simply set forth the ethical standards necessary for an institution to call itself ‘Catholic.’”33 In particular, the court found that, even though USCCB “does intend the Directives to be implemented by all Catholic healthcare institutions,” USCCB “has not required Trinity Health [the operators of MHP] or Mercy Health to affiliate with the Catholic Church.”34 Rather, the court declared that it was the actions of CHM, Trinity Health, and MHP that connected the USCCB to Michigan since those entities chose to operate Catholic hospitals in Michigan and therefore to adopt the Directives. Furthermore, the court asserted that USCCB’s act of publishing the Directives does not display an intent to establish contacts in Michigan, even though the USCCB intended that Catholic hospitals – including those in Michigan – must follow its Directives since the USCCB itself must confirm to the IRS the tax-exempt status of Catholic health care entities nationwide.35 Second, the Sixth Circuit held that Means failed to state a valid claim for negligence against the CHM defendants, Stanley Urban, Robert Ladenburger, and Mary Mollison. The CHM defendants were current and former chairs of Catholic Health Ministries, the Catholic entity that sponsors Trinity Health, which is the health care system that operates MHP and other hospitals.36 CHM’s bylaws provide that CHM “will adhere to [the Directives] promulgated by [USCCB].”37 Therefore, Trinity Health’s Amended Articles of Incorporation provide that its “activities . . . shall be carried out in a manner consistent with” the “directives promulgated from time to time by [CHM] and the values and principles inherent in the

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Id. at 649. Id. at 650. Id. See id. at 650–651. Id. at 647. See generally Elizabeth Sepper, Zombie Religious Institutions, 112 Nw. U. L. Rev. 929 (2018) (explaining complexity of hospital systems with respect to religious affiliations and mandates). Means, 836 F.3d at 647.

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medical-moral teachings of the Church (such as the [Directives]) as promulgated from time to time by [USCCB].”38 In order to state a claim for negligence, Means had to prove that: (1) defendants owed her a duty of care; (2) defendants breached that duty; (3) plaintiff was injured; and (4) defendants’ breach caused the plaintiff’s injuries.39 The Sixth Circuit characterized Means’ position as advocating for the recognition of a duty under Michigan law on the part of religious organizations to adopt ethical directives that do not contradict the medical standard of care. The court avoided acknowledging that the defendants’ affirmative activities of promulgating policies intended to limit medical care triggered the well-established duty to exercise due care. Due care required the defendants to prevent unreasonable harm to those who might be foreseeably harmed by the defendants’ affirmative undertakings. Instead, the Sixth Circuit concluded that even if the CHM defendants had a duty of due care, “Means’s factual allegations do not create the plausible inference that any breach of that duty proximately caused any injury to Means within the strictures of Michigan negligence law.”40 First, in the original opinion, the court noted that the defendants’ relevant actions were the adoption of the USCCB’s religious Directives. However, it asserted that it was unclear whether the Directives restricted MHP from giving Means the information it withheld from her – such as information about the health risks of continuing her pregnancy, the likelihood that her baby would not survive, and the option to terminate the pregnancy before discharging her.41 Second, the court held that even if it accepted Means’ allegation that the Directives caused MHP’s restriction of information and substandard provision of health care, her complaint suffered from a deficiency under Michigan negligence law. The court emphasized that it did not doubt Means’ allegations that “she suffered physical and mental pain, emotional injuries, a riskier delivery, shock and emotional trauma from making funeral arrangements for her dead child, and other ‘discomforts and pain.’”42 Nevertheless, the court held that Michigan law requires “present physical injury” to state a claim for negligence.43 The original opinion concluded that without further physical manifestations of her emotional distress Means’ physical distress – including from bacterial infections and emotional trauma – did not suffice to state a claim for negligence. The court held that 38 39 40 41 42 43

Id. (internal quotations omitted). See id. at 652. Id. See id. at 652–653. Id. at 653. Id.

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despite her bacterial infections and riskier delivery, without an allegation of long-term physical effects Means had failed to state a claim that the defendants, by adopting the Directives, caused her a cognizable injury under a negligence theory.44 The Sixth Circuit did not discuss the district court’s holding that the Directives are religious documents that the district court could not interpret and, therefore, Means’ lawsuit must be dismissed on ecclesiastical abstention grounds.45 In sum, the original opinion refused to acknowledge the USCCB’s power and national reach in dictating health care treatment policies at Catholic hospitals around the country. Furthermore, the court failed to hold to account local Catholic health care entities that directly and negligently harm the health of patients who often remain unaware that they have received substandard care.

the feminist judgment Griffin’s rewritten opinion responds to the crabbed logic of the original opinion in several ways that reflect a feminist approach. The original opinion’s exceedingly narrow and formalistic interpretation of personal jurisdiction ignored the reality that, by mandating and enforcing the Directives nationwide, the USCCB seeks to control the delivery of health care within every forum that has a Catholic hospital. In contrast, Griffin’s feminist judgment holds the USCCB accountable for issuing and enforcing health care policies that place its religious interests above that of patient health. Furthermore, the original opinion failed to recognize the seriousness of the harms pregnant people46 suffer when seeking health care at sectarian hospitals that prioritize religious beliefs over patient health. This comment uses the term “pregnant people” to recognize that trans and gender non-binary people also experience pregnancy and pregnancy-related health care needs, while also at times referring to impacts of policies on “women’s” health to acknowledge the gendered impacts of regulation on women as traditionally defined.47 44 45

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See id. at 654. See Means v. U.S. Conference of Catholic Bishops, No. 1:15-CV-353, 2015 WL 3970046 at *12–14 (W.D. Mich. June 30, 2015). See Jessica A. Clarke, They, Them, and Theirs, 132 harv. l. rev. 894, 954 (2019) (discussing gender identity and pregnancy discrimination). Loretta J. Ross & Rickie Solinger, Reproductive Justice: An Introduction 6–8 (2017) (noting the struggle to both be inclusive of trans and gender non-binary people while also recognizing disproportionate impacts on women as that category has traditionally been defined).

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The original opinion refused to hold accountable the entities responsible for issuing the religion-driven health care policies that are the root cause of hospitals’ departures from medical standards of care. In contrast, the revised opinion recognizes that the law should properly compensate patients for reproductive health injuries and deter future injuries by moving up the chain of command and targeting the source of substandard health care. By acknowledging that the Directives ultimately motivate hospitals’ departures from appropriate standards of medical care, perhaps based on a fear of being censured,48 the feminist judgment allows the law to hold religious entities responsible for negligently issuing policies that incite medical malpractice. Griffin’s feminist judgment also takes seriously Means’ suffering, rather than dismissing her physical and emotional injuries as insufficient. Feminist legal scholars have long criticized the numerous ways in which courts have ignored or devalued the tort law claims of marginalized groups, particularly women and people of color.49 Tort law has often failed to provide full compensation for injuries that disproportionately affect women and pregnant people, such as harms related to pregnancy and childbirth.50 As Martha Chamallas has argued, the “unstated norms in tort doctrines still tend to be based on men’s life experiences.”51 This implicit male bias in tort law especially affects health care claims in the realm of reproductive health, resulting in a lack of compensation for devastating wrongs such as in cases of miscarriage and stillbirth caused by medical negligence.52 Griffin’s revised opinion corrects male bias in tort law by framing reproductive harms as properly fitting within routine analysis of due care in negligence law. Finally, and most critically, the feminist judgment emphasizes that religious refusal laws do not and should not give health care entities and health care providers “an absolute legal right to deny women’s health and well-being.” Particularly in the context of emergency medical treatment, the feminist judgment recognizes that patients must be able to make their own fully

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See, e.g., Nat’l Women’s Law Center, Diagnosing Discrimination: Barriers Facing Health Care Providers Who Support and Perform Abortion (2018) at 8 (describing stories of physicians at sectarian institutions penalized for providing appropriate care). See generally Martha Chamallas & Jennifer Wriggins, The Measure of Injury: Race, Gender, and Tort Law (2010). See, e.g., Jamie R. Abrams, Distorted and Diminished Tort Claims for Women, 34 Cardozo L. Rev. 1955 (2013); Carol Sanger, The Lopsided Harms of Reproductive Negligence, 118 Colum. L. Rev. Online 29 (2017). Martha Chamallas, Feminist Legal Theory and Tort Law 3 (Ohio St. Pub. L. Working Paper No. 448, 2018), https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3198115. See id. at 29–32.

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informed medical choices, including relating to pregnancy termination.53 Even if Catholic hospitals will not generally provide pregnancy termination care, the feminist judgment demands that “conscience provisions at the very least require that medical personnel give [a patient] full information about her health status and her options.” While hospitals and health care providers should certainly be held to the standard requirements of informed consent law, tort law should also hold religious entities accountable for promulgating policies governing the delivery of health care that instigate hospitals and health care providers to make decisions that violate medical standards of care. In sum, the revised opinion ensures that the law demands what medical ethics already requires – to put patient health first.54 As the feminist judgment succinctly and pointedly emphasizes: “Means’s health matters.”

implications Griffin’s feminist judgment, if it were adopted, would potentially lay the foundation for protecting patient health nationwide at Catholic hospitals and other institutions with policies or providers asserting personal belief exemptions from standard medical care. Catholic-owned hospitals are of special concern since they represent the largest percentage of religiously affiliated hospitals, “operating 15.2% of the nation’s hospital beds, and increasingly they are the only hospitals in certain regions within the United States.”55 This market share results in both Catholic and nonCatholic patients depending on Catholic hospitals for their care. However, patients often remain unaware of how Catholic hospitals curtail their health care options.56 While execution of Catholic doctrines at hospitals throughout the United States varies at both the institutional and individual level,57 the standards of medical care at some Catholic hospitals “are at variance with those generally 53

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See Maya Manian, The Irrational Woman: Informed Consent and Abortion Decision-Making, 16 Duke J. Gender L. & Pol’y 223 (2009) (discussing the general principles of informed consent law and how law related to abortion deviates from those legal norms). See Br. of Amici Curiae, supra note 18; Am. College of Obstetricians & Gynecologists, Committee Opinion No. 385: The Limits of Conscientious Refusal in Reproductive Medicine 1 (2015) (highlighting conflicts of conscience in reproductive medicine). Lori R. Freedman et al., When There’s a Heartbeat: Miscarriage Management in CatholicOwned Hospitals, 98 Am. J. Pub. Health 1774, 1774 (2008); see also Lori R. Freedman, Willing and Unable: Doctors’ Constraints in Abortion Care 119–120 (2010). See Freedman et al., supra note 56, at 1774. Id. at 1776.

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recognized in other medical settings, particularly regarding care at the beginning and ending of life.”58 Research indicates that pregnant women who are miscarrying, even well before viability, may face serious risks to their health due to anti-abortion policies at some hospitals. Physicians in one study reported that “Catholic doctrine, as interpreted by their hospital administrations, interfered with their medical judgment.”59 For example, “Catholicowned hospital ethics committees [have] denied approval of uterine evacuation while fetal heart tones were still present, forcing physicians to delay care or transport miscarrying patients to non-Catholic-owned facilities.”60 In a few cases, physicians even admitted to intentionally violating protocol “because they felt patient safety was compromised.”61 As the Means case illustrates, Catholic hospitals neither inform pregnant people of the full extent of the limits of their care, nor do they leave the decision of whether and when to terminate the pregnancy to the patient, even in the context of an emergency hospital visit.62 Similar deviations from standards of medical care may also occur in the context of ectopic pregnancies. An ectopic pregnancy occurs when a fertilized egg implants outside the uterus, such as in the fallopian tube. An ectopic pregnancy has no chance of survival and threatens the life of the pregnant woman.63 The generally accepted standard of care dictates termination of the pregnancy, which can be done directly with medication that ends the pregnancy but preserves the fallopian tube. However, strict interpretation of Catholic doctrine would require the entire fallopian tube be removed so the physician only indirectly kills the fetus. Assuming she had two functioning fallopian tubes, the woman would lose fifty percent of her fertility.64 In sum, research indicates that the health care refusal policies of at least some Catholic hospitals, which are sheltered by refusal legislation, “require 58

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Id. at 1775; see also Lori R. Freedman & Debra B. Stulberg, Conflicts in Care for Obstetric Complications in Catholic Hospitals, 4 Am. J. on Bioethics Primary Rsch. 1 (2013) (noting the impact on physicians’ ability to provide the standard of care in obstetric emergencies). Freedman et al., supra note 56, at 1774; see also Steph Sterling & Jessica L. Waters, Beyond Religious Refusals: The Case for Protecting Health Care Workers’ Provision of Abortion Care, 34 Harv. J.L. & Gender 463, 472–474 (2011). Freedman et al., supra note 56, at 1774. Id. See id. See Nat’l Health Law Program, Health Care Refusals: Undermining Quality Care for Women 15, 40, 57 (2010) (discussing conscience clauses and restrictions on the use of emergency contraception and certain treatments for ectopic pregnancies). See Freedman, supra note 56, at 170 n.5; see also Angel M. Foster et al., Do Religious Restrictions Influence Ectopic Pregnancy Management? A National Qualitative Study, 21 Women’s Health Issues 104, 106–107 (2011).

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physicians to act contrary to the current standard of care” and therefore compromise “the private patient-physician relationship, patient safety, and patient comfort.”65 The findings in these studies do not indicate how widespread the problem of delay and transport in miscarriage management is in Catholic hospitals; they do indicate that “Catholic medical practices reflect confusion and disagreement about how far to extend the Catholic Church’s prohibition of abortion.”66 In the context of miscarriage, the manual relied upon by Catholic hospital ethics committees declares: “The mere rupture of membranes, without infection, is not serious enough to sanction interventions that will lead to the death of the child.”67 In other words, the authoritative source of medical guidance at Catholic hospitals approves of uterine evacuation “only after a woman becomes sick,” even in cases of inevitable miscarriage.68 In contrast, standard medical practice advises against delay during a miscarriage or if the pregnancy presents health risks, although ultimately the decision is left to the woman through a process of informed consent.69 Given the market share of sectarian hospitals and their dominance in some regions, as well as the protection from liability granted by federal and state conscience legislation, refusal policies affect more than a population that believes in religious doctrine on reproductive healthcare. Although patients may be aware that they cannot obtain abortion care at certain sectarian hospitals, “few prenatal patients conceive of themselves as potential abortion patients and therefore they are not aware of the risks involved in being treated there,” including the risks of physical and psychological trauma due to delayed care.70 These risks and harms are disproportionately felt by rural women and women of color, who have more limited options in seeking care.71 The feminist judgment would have limited these harms at hospitals nationwide by holding the USCCB and subsidiary entities like CHM responsible for issuing policies that negligently require or encourage deviations from standard medical care. 65

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Freedman et al., supra note 56, at 1778; see also Freedman, supra note 56, at 128–137 (further examining miscarriage management at Catholic-owned hospitals). Freedman, supra note 56, at 136. Nat’l Catholic Bioethics Ctr., Catholic Health Care Ethics: A Manual for Ethics Committees 10A/2 (Peter J. Cataldo & Albert S. Moraczewski eds., 2001); see also Freedman et al., supra note 56, at 1775. Freedman et al., supra note 56, at 1776. See id. at 1775 (describing informed consent process “which requires that the patient understand all appropriate medical options, as well as the relevant risks and benefits of each, before choosing and consenting to a course of management”). Id. at 1778. See Kira Sheperd et al., supra note 1.

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The feminist judgment also challenges the widely held but false assumption that abortion care can be segregated from women’s medical care and targeted for special restrictions without any ripple effects on women’s health more broadly. When most people think about legal restrictions on abortion, they likely do not think about stories like that of Tamesha Means. People think of abortion legislation as regulations that prevent pregnant people from receiving abortion care, not as regulations that affect physicians’ decisions about how to treat a patient suffering a miscarriage. The feminist judgment highlights how refusal laws apparently restricting abortion care in fact impact all women’s health care across a wide span of medical issues, even for people not actively seeking abortion care. Anti-abortion refusal laws and policies limit treatment options not only for miscarriage management, but also potentially for prenatal care, pregnancy-related emergent conditions, such as ectopic pregnancies, contraceptive services, and end-of-life care.72 In recent years, anti-abortion legislation has become exceedingly popular across the country, in part due to the rightward political shift in many state legislatures. From 2011 through 2013 alone, legislatures in thirty states enacted over two hundred abortion restrictions – more than the total number of antiabortion laws enacted in the entire previous decade.73 Justice Kennedy’s retirement in 2018, followed by the contentious appointment of Justice Kavanaugh, further emboldened state legislators to pass increasingly extreme restrictions on access to abortion care in the hopes of encouraging the Supreme Court to overturn Roe v. Wade.74 Support for these restrictive laws rests at least in part on the faulty belief that anti-abortion legislation impacts only pregnant people actively seeking abortion care – people who are highly stigmatized for that choice.75 This belief in the supposedly narrowly targeted impact of anti-abortion laws relies on the false assumption that abortion can be isolated from other aspects of women’s health. The feminist judgment points out that abortion cannot be isolated from the continuum of women’s health 72

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See Maya Manian, The Consequences of Abortion Restrictions for Women’s Healthcare, 71 Wash. & Lee L. Rev. 1317 (2014); Maya Manian, Lessons from Personhood’s Defeat: Abortion Restrictions and Side Effects on Women’s Health, 74 Ohio St. L.J. 75 (2013). Heather D. Boonstra & Elizabeth Nash, A Surge of State Abortion Restrictions Puts Providers and the Women They Serve – in the Crosshairs, 17 Guttmacher Pol’y Rev. 9, 9 (2014). See Dov Fox, The Legal Challenge of Abortion Stigma – and Government Restrictions on the Practice of Medicine, 50 Hastings Ctr. Rep. 13 (2020) (positing that the Supreme Court granted certiorari for June Medical Services because of the political shift of the Court). Note that this chapter was written before Roe v. Wade was overturned in June 2022. There is extensive literature on abortion stigma. See generally Jenny O’Donnell et al., Resistance and Vulnerability to Stigmatization in Abortion Work, 73 Soc. Sci. & Med. 1357 (2011) (discussing stigma surrounding abortion for both patients and providers).

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care since pregnancy termination is a necessary option in the context of miscarriage management. The rewritten opinion thus illuminates how religious or conscience-based refusal statutes supposedly targeting abortion lead to degraded health care across a wide range of medical issues. By holding sectarian entities responsible for issuing health care directives that impel health care providers to put religion before patient health, the feminist judgment also has implications for refusal legislation in the context of access to health care more broadly. Refusal laws impact not only a wide range of reproductive health care, but also end-of-life care and health care for LBGTQ+ individuals in settings beyond sectarian hospitals.76 For example, in 2018, the Trump administration promulgated a rule entitled “Protecting Statutory Conscience Rights in Health Care; Delegations of Authority” that purported to implement more than thirty statutory provisions that would allow a broad range of individuals and entities to abstain from providing medical care based on their religious or moral objection.77 Such health care refusals would cover objections including but not limited to abortion care, sterilization, and assisted suicide, as well as counseling and referrals related to those areas of care, in a wide variety of settings ranging from hospitals, pharmacies, and medical laboratories to medical training programs, health maintenance organizations, health insurance issuers, and third-party administrators.78 The 2019 federal rule makes no exception for emergency medical treatment either. For example, under the 2019 rule, an ambulance driver could cease driving while en route to a hospital upon learning the patient sought emergency care for an ectopic pregnancy based on a protected moral objection to pregnancy termination.79 The 2019 Trump administration rule is but one example of larger efforts to weaponize claims of religious freedom or conscientious objection to excuse discrimination in health care.80 The Trump administration also announced a new “Conscience and Religious Freedom” division in the US Department of Health and Human Services (HHS) Office for Civil Rights.81 In the face of 76

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See Douglas NeJaime & Reva B. Siegel, Conscience Wars: Complicity-Based Conscience Claims in Religion and Politics, 124 Yale L.J. 2516, 2535–2536 (2015). Protecting Statutory Conscience Rights in Health Care; Delegations of Authority, 84 Fed. Reg. 23,170 (May 21, 2018) (codified at 45 C.F.R. pt. 88). See New York v. U.S. Dep’t of Health & Hum. Servs., 414 F. Supp. 3d 475 (S.D.N.Y. 2019) (describing the Trump administration’s 2019 health care conscience protection rule and enjoining the rule as violating various statutory and constitutional provisions). See id. at 539. See Elizabeth Sepper, Free Exercise Lochnerism, 115 Colum. L. Rev. 1453 (2015). See HHS Announces New Conscience and Religious Freedom Division, U.S. Dep’t of Health & Human Servs. (Jan. 18, 2018), www.hhs.gov/about/news/2018/01/18/hhs-ocr-announces-newconscience-and-religious-freedom-division.html.

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these attempts to justify inequitable and harmful restrictions on health care, Griffin’s feminist judgment would set an important precedent bolstering protection for patients’ health and equitable access to care.

conclusion Laws and court decisions shielding health care providers and the entities that govern those providers when they refuse to provide appropriate medical care – including providing informed consent and emergency medical treatment – cause harm to patient health. Health care refusal protections disproportionately impact marginalized groups and contribute to health disparities, particularly in the context of reproductive and LGBTQ+ health care. The feminist judgment provides a much needed corrective to the ongoing regressive push to permit numerous entities, from hospitals to pharmacists to employers, to refuse to provide equal access to health care for all patients.82

M E A N S V. UNITED STATES CONFERENCE OF CATHOLIC BISHOPS, 836 F.3D 643 (6TH CIR. 2016)

leslie c. griffin, circuit judge, delivered the opinion of the court We reverse the judgment of the district court, which dismissed this case, and remand for proceedings consistent with this opinion, thereby allowing Tamisha Means’ negligence lawsuit against the United States Conference of Catholic Bishops (USCCB) and the Catholic Health Ministries (CHM) to proceed.

i Tamesha Means was eighteen weeks pregnant when her waters broke and she became a patient at Mercy Health Partners (MHP), a Catholic hospital in western Michigan. MHP is the only hospital within thirty minutes of Means’ home. Means’ doctors gave her pain medication and sent her home, telling her to return a week later. 82

See, e.g., Elizabeth Sepper & Jessica L. Roberts, Sex, Religion, and Politics, or the Future of Healthcare Antidiscrimination Law, 19 Marq. Benefits & Soc. Welfare L. Rev. 217 (2018).

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Instead, Means returned to the hospital the next morning, suffering from a fever, pain, and bleeding. The hospital sent her home again, as soon as her fever dropped. She arrived at the hospital for a third time that same night. Three hospital visits in two days. While the hospital was preparing yet again to discharge her, Means gave birth to her baby, who died within three hours. Means also had two acute bacterial infections when she gave birth, related to her earlier mistreatment in the hospital. She suffered extreme pain and suffering from the medical mistreatment and from the hospital’s request that she make plans to bury her child. According to Means’ complaint: After MHP staff examined her, Plaintiff alleges she was not informed that her fetus would either not be born alive or would be born alive and die shortly thereafter. Compl. } 20. Further, Plaintiff alleges that MHP did not inform her about the serious risks to her health if she attempted to continue the pregnancy, nor did MHP raise or discuss the option of terminating her pregnancy and that the fetus she was carrying had almost no chance of survival. Compl. } 22. Additionally, Plaintiff alleges that MHP did not inform her that MHP’s policy does not permit it to help Plaintiff complete the miscarriage as long as there is a fetal heartbeat or that if she desired to terminate her pregnancy she would have to go to another hospital. Compl. }} 23–24. Plaintiff claims MHP did not give her any other options for treatment. Comp. } 29. Again, [on the second day] Plaintiff alleges that MHP did not inform her of the extremely low likelihood that the fetus would survive or of the risks of injury or death that she faced if she attempted to continue her pregnancy, nor explain the option of ending the pregnancy. Compl. }} 34–36. Plaintiff alleges that at the time MHP sent her home, Plaintiff’s treating physician suspected she had chorioamnionitis but MHP did not inform her of this possible infection. Compl. } 38. [On the third visit], Plaintiff returned to MHP. Compl. } 41. Plaintiff alleges that MHP did not inform her of the very low chance that the fetus would survive, the risks to her health of continuing her pregnancy, or the medically appropriate treatment of terminating her pregnancy; instead, MHP prepared to discharge her. Compl. } 42. While Plaintiff was waiting to be discharged, she began to deliver and the feet exited the cervix. Compl. } 43. Plaintiff gave birth at approximately 12:13 a.m. on December 3, 2010. The baby died after only about two and a half hours. Compl. } 44; Means v. United States Conference of Catholic Bishops, 2015 WL 13035285, at *1 (E.D. Mich. Mar. 31, 2015).

Means alleged that the USCCB was negligent for promulgating MHP’s health-limiting decisions, and that the CHM was negligent for adopting the bishops’ policies to set the medical standard at MHP.

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Under the medical standard of care, Means should have been told on her first visit what the doctors discovered about her. She should have been told that her fetus would probably not survive, that her health was at risk, and that inducing labor or having an abortion was a sound medical choice for her to make. She should have been told that she should consider a number of options, including early delivery or an abortion, a medical procedure that is protected by the US Constitution. See Planned Parenthood of Se. Pa. v. Casey, 505 U.S. 833 (1992). Instead of allowing Means to make her own, fully informed medical choices, her doctors made their own choices for her. Instead of following the medical standard of care, they obeyed the Ethical and Religious Directives for Catholic Health Care Services (5th ed., 2009) (ERD). The ERD are Catholic rules, required for a Catholic hospital to keep its Catholic identity, that prohibit hospital personnel from giving full reproductive care to women and men. The rules encourage doctors not to give patients their full medical picture about a pregnancy or its possible success or failure. In this lawsuit, Means sued two groups of people responsible for establishing the ERD as the guiding principles at MHP. The first is the USCCB, who wrote the ERD and required that their writings provide the “medical” goals for every Catholic hospital. Means alleges the USCCB were negligent in requiring the ERDs for her hospital, which prevented Means from receiving standard medical care at MHP. The second group is the CHM, whose three board chairs, Stanley Urban, Robert Ladenburger, and Mary Mollison, adopted the ERD for MHP and fifteen other Michigan Catholic hospitals. Means alleges that they were negligent when they adopted the ERDs as policy at MHP, a policy that was not health or life-protective. The district court concluded that the tort lawsuit against CHM did not state a legal claim under Rule 12(b)(6) and was blocked by ecclesiastical abstention. It also ruled that it lacked personal jurisdiction over USCCB. See Means v. U.S. Conference of Catholic Bishops, 2015 WL 3970046 (W.D. Mich. June 30, 2015). We reverse the judgment of the district court and remand the case for further proceedings consistent with this opinion, meaning that Means can litigate her case in court. This case is about the legal protection of an injured patient’s health through tort law. Our courts give Means the right to sue for her damages; she “is not left without recourse to vindicate her rights to appropriate and necessary medical care” against these two defendants. Id. at 14. Her negligence lawsuit may proceed. Religious freedom does not block its litigation. CHM’s adoption of the ERD confirmed the hospital’s commitment that MHP would obey these rules, no matter what. The court has personal jurisdiction over the USCCB,

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who drafted the ERD and insisted that every Catholic hospital must obey them or lose its Catholic identity. By their actions, USCCB and CHM allegedly restricted sound medical care and harmed Means’ health. They can be sued under secular legal standards that protect women’s health and well-being.

ii The district court dismissed Means’ lawsuit against CHM for failure to state a claim upon which relief could be granted. The court concluded the defendants owed no duty of due care to Means. We reverse because Means has alleged a valid tort claim against CHM and USCCB. In contrast to the district court, we find that Michigan tort law gives both defendants a duty to protect and preserve the plaintiff’s health. The lawsuit against USCCB can proceed because we have reversed the trial court’s personal jurisdiction conclusion. The courts have explained that “[t]o establish a prima facie case of negligence, a plaintiff must prove that ‘(1) the defendant owed the plaintiff a legal duty, (2) the defendant breached the legal duty, (3) the plaintiff suffered damages, and (4) the defendant’s breach was a proximate cause of the plaintiff’s damages.’” Hill v. Sears, Roebuck & Co., 822 N.W.2d 190, 195 (Mich. 2012) (quoting Loweke v. Ann Arbor Ceiling & Partition Co., 809 N.W.2d 553 [Mich. 2011]). “Every person engaged in the performance of an undertaking has a duty to use due care or to not unreasonably endanger the person or property of others.” Hill, 822 N.W.2d at 196; see also Murdock v. Higgins, 559 N.W.2d 639 (Mich. 1997) (citing Buczkowski v. McKay, 490 N.W.2d 330 (Mich. 1992) [“In determining whether to impose a duty, this Court evaluates factors such as: the relationship of the parties, the foreseeability of the harm, the burden on the defendant, and the nature of the risk presented.”]). The Plaintiff’s allegations argue that the defendants did not exercise due care toward her and unreasonably endangered her health and life. In contrast, the defendants argue that Means is only pursuing a tort claim against them because she is unable to pursue a medical malpractice claim against the doctors who treated her, due to the fact that the statute of limitations has already passed for her medical malpractice claim. Means responds that this is a non-malpractice, independent tort lawsuit. We agree with Means that she has alleged an independent, nonmalpractice cause of action against both defendants in this lawsuit. Michigan law protects such a lawsuit. In Dyer v. Trachtman, 679 N.W.2d 311, 315 (Mich. 2004), the court recognized that a plaintiff could pursue a nonmalpractice tort claim against an independent medical examiner (IME), who

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was not the patient’s doctor. It recognized that such physicians have a tort law duty “to conduct the examination in a manner not to cause harm to the person being examined,” even though they were not the plaintiff’s personal physicians. Michigan has also recognized that hospital policymakers can be sued in negligence. See Theophelis v. Lansing Gen. Hosp., 424 N.W.2d 478 (Mich. 1988) (internal quotation marks and citation omitted). Plaintiffs may pursue independent tort suits against non-physician medical actors like the defendants here. A tort duty is owed by the defendants to the plaintiff in this case. Both defendants undertook affirmative activities to promulgate and adopt policies governing medical personnel at MHP, which were intended to dictate medical treatment decisions for patients at MHP. When they engaged in the active promulgation and adoption of these standards, they undertook an obligation to exercise due care in doing so, in order to avoid unreasonable harm to patients who might foreseeably be harmed by their affirmative conduct. Therefore the defendants owed Means a duty to care for her health. Means’ lawsuit alleges that MHP personnel failed to fully and accurately inform her of her medical diagnosis and failed to provide appropriate medical treatment consistent with medical standards of care and that they did so because MHP personnel were following the dictates promulgated by USCCB and adopted by CHM. Hospital staff repeatedly sent Means home, rather than providing standard treatments for medical management of her ongoing miscarriage. They failed to provide accurate information about the risks to Means’ health if she followed their advice. These actions may have been carried out by MHP staff, but they were directed by USCCB and CHM. Means argues that the defendants blocked her from receiving appropriate medical care. In her words: The standard of medical care required MHP to: a. inform Plaintiff about her treatment options prior to discharge on December 1 and December 2, 2010 including termination of her pregnancy; b. inform Plaintiff about the health risks associated with continuing her pregnancy after her waters broke; c. inform Plaintiff that even if she continued her pregnancy despite the associated health risks, there was virtually no chance that the fetus she was carrying would survive; and d. provide appropriate medical care to Plaintiff.

Compl. at 8. Means did not receive that medical care, however, because the ERD, promulgated and adopted by the defendants in this case, prohibited her medical caretakers from taking the appropriate medical steps that would

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protect her health. USCCB and CHM blocked the staff from giving her complete and accurate health-protective information. The lessons from amici curiae obstetricians and gynecologists in this case explain in more detail the defendants’ alleged failure to meet the medical standard of care: No one at MHP informed Ms. Means that this diagnosis represented a significant risk to her health and the near certainty that her fetus would not survive, much less explained that pregnancy termination was a standard treatment option in such circumstances. . . In repeatedly discharging Ms. Means without raising even the possibility of pregnancy termination, the care provided at MHP fell short of the clear standard of practice for previable PROM [premature rupture of membranes].

Br. of Amici Curiae Obstetrician-Gynecologists Supporting Plaintiff-Appellant at 6, 9. The defendants arguably breached the duty of medical care when they ordered that their religious rules be obeyed instead of paying attention to Means’ health. They authorized her medical personnel to ignore the medical considerations connected to her pregnancy. Medical personnel repeatedly sent her home instead of offering her information, care, or even a referral to a doctor who would help. Because they set in motion the policies that limited Means’ health care, the defendants could be found by the jury to be the cause of the damages she suffered. The injuries alleged by Means – severe pain, mental pain and anguish, emotional injuries, a riskier and more painful breech delivery, shock and emotional trauma connected with funeral arrangements for the child, and other discomforts and pain associated with those procedures – are tort injuries that can be pursued in this lawsuit because they could have been proximately caused by the defendants’ negligence in pursuing religious goals instead of medical ones.

iii Means argues that hospitals are not authorized to violate the medical standard of care for women. The defendants respond that both Michigan’s statutes granting a right to health care providers to refuse to participate in an abortion for reasons of conscience and the First Amendment to the US Constitution require dismissal of this lawsuit. The district court dismissed the lawsuit against CHM on ecclesiastical abstention grounds, concluding that the ERD were religious documents that it could not interpret. See Means,

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2015 WL 3970046, at *12. Although the district court did not reach conclusions about the Michigan refusal clauses or about the role of the federal health care statute, the Emergency Medical Treatment and Active Labor Act (EMTALA), 42 U.S.C. § 1395dd, in this case, it did comment on both of them. We agree with Means that her lawsuit can be litigated. In hospitals, as in other medical settings, health always comes first. Tamesha Means’ health must be considered in this litigation, which means the treatment of her physical well-being can be litigated in court. USCCB can be sued, as well as CHM, because we reject the district court’s decision not to take jurisdiction over them. Health is the starting point of all medical care. It explains why the patient’s right to give informed consent to treatment has been central to medical ethics. See, for example, Shuler v. Garrett, 743 F.3d 170, 173 (6th Cir. 2014). Nonetheless, on three consecutive hospital visits in two days, hospital officials obeyed the ERD and refused to tell Means about her health or the status of her pregnancy. Means could have been provided with full information about her health status and information about appropriate and available medical procedures, even if the hospital itself would not provide those procedures. USCCB and CHM argue that the First Amendment’s Free Exercise Clause frees them to disobey the law and to follow their own religion over legal standards intended to protect Means’ health. This is not the courts’ teaching. The Supreme Court has stated quite clearly that the First Amendment does not justify illegality. As the Court explained in its well-known Smith decision: “Can a man excuse his practices to the contrary because of his religious belief? To permit this would be to make the professed doctrines of religious belief superior to the law of the land, and in effect to permit every citizen to become a law unto himself.” Emp. Div. v. Smith, 494 U.S. 872, 879 (1990); see also Stormans, Inc. v. Wiesman, 794 F.3d 1064 (9th Cir. 2015) (neutral and general health law must be obeyed by religious institutions). The law, including the First Amendment, tells medical personnel to care for the health of their patients. It does not authorize illegal and harmful acts. Religious belief must not become superior to the health law of the land. Religious personnel must not become a law unto themselves. Means’ health matters and is protected by the courts of law. The district court relied on the Supreme Court’s property cases, which address theological disputes among members of a religion, to dismiss this case. See, for example, Means, 2015 WL 3970046, at *12 (citing Watson v. Jones, 80 U.S. 679 [1871]; Serbian E. Orthodox Diocese v. Milivojevich, 426 U.S. 696 [1976]; Kedroff v. St. Nicholas Cathedral of Russian Orthodox Church in N. Am., 344 U.S. 94 [1952]). We agree with Means, however, that this is a

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dispute about health care, not religion, because she is asking the court “to determine whether the imposition of the Directives on MHP caused her harm.” Id. at *13. As Plaintiff noted, this court has held that, in religious settings, the “laws of defamation and intentional infliction of emotional distress . . . can be applied based solely on secular rules.” Ogle v. Hocker, 279 F. App’x 391, 395 (6th Cir. 2008). As in Ogle, the secular rules of health law can and should be applied to this case. The defendants also argued that Michigan law grants them immunity from the charges in this negligence lawsuit. See Reply in Support of Defendants Stanley Urban, Robert Ladenburger, and Mary Mollison’s Motion to Dismiss 6–8 (W.D. Mich. June 4, 2015). They cite section 333.20181, which holds: A hospital, clinic, institution, teaching institution, or other health facility is not required to admit a patient for the purpose of performing an abortion. A hospital, clinic, institution, teaching institution, or other health facility or a physician, member, or associate of the staff, or other person connected therewith, may refuse to perform, participate in, or allow to be performed on its premises an abortion. The refusal shall be with immunity from any civil or criminal liability or penalty.

MCL § 333.20181. The defendants also cite section 333.20183, which states: (1) A physician who informs a patient that he or she refuses to give advice concerning, or participate in, an abortion is not liable to the hospital, clinic, institution, teaching institution, health facility, or patient for the refusal. (2) A civil action for negligence or malpractice or a disciplinary or discriminatory action may not be maintained against a person refusing to give advice as to, or participating in, an abortion based on the refusal. MCL § 333.20183. Means is protected under a different section of Michigan law, § MCL 333.20201, which is known as the Patient Bill of Rights. Included among rights that should have applied to Means in this situation are “to receive adequate and appropriate care, and to receive, from the appropriate individual within the health facility or agency, information about his or her medical condition, proposed course of treatment, and prospects for recovery, . . . to receive information concerning his or her continuing health needs and alternatives for meeting those needs, . . . the right to independent personal decisions and the right to knowledge of available choices, [and] adequate and appropriate pain and symptom management.” MCL § 333.20201(2).

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The district court noted that Plaintiff Means argued that the statutes cited by the defendants “are circumscribed by laws that require hospitals to provide proper treatment to women seeking emergency treatment for miscarriages.” Pl.’s Br. at 16. The court also noted that the defendants “have not demonstrated that the refusal statutes, which cover a ‘hospital, clinic, institution, teaching institution, or other health facility,’ covers them as individuals who comprise a board that establishes hospital policy.” See Means, 2015 WL 3970046, at *12 (citing MCL § 333.20181). The district court then refused to rule on the refusal clause issue, citing “the lack of discovery and briefing on this issue.” Id. The district court should not grant immunity to the defendants upon remand. The refusal clauses do not bar a lawsuit on the facts and circumstances of the present case. They do not require pretrial dismissal of this lawsuit. Together, the USCCB, CHM, and MHP adopted and enforced policies that kept women from getting full information about the state of their health, their medical needs, and treatment possibilities. Conscience or refusal protections do not give medical personnel an absolute legal right to inflict harms on women’s health and well-being. The trial court also mentioned EMTALA, noting that Means had cited it “for the proposition that a hospital may not refuse to take action if a patient would be endangered, even when the action involves abortion.” Id. at *12. The court then concluded that Plaintiff had “not alleged a violation of EMTALA, not shown that MHP or any CHM-affiliated hospital is covered by EMTALA.” Id. Should Means allege that, however, her health is protected by the federal statute. See Romine v. St. Joseph Health Sys., 541 F. App’x 614, 618 (6th Cir. 2013). That statute requires that a patient who comes to a hospital with an emergency, as Means did, be given stabilizing treatment until she can be transferred or discharged. Stabilizing treatment requires that “no material deterioration of the condition is likely to result” by sending the patient home. EMTALA, 42 U.S.C. § 1395dd(e)(3)(A). Hospital staff hid the full consequences of Means’ pregnancy-related illness from their patient instead of fully caring for her. They sent her home without adequate treatment three times in a row. She arguably suffered “material deterioration” of her health, which she can litigate in court. EMTALA does not include any religious exemptions. Under that statute, Means was entitled to the hospital’s protection without religious exception. She can argue in her lawsuit that she did not get that treatment. Under the allegations of this lawsuit, due to the active direction of USCCB and CHM, MHP personnel provided substandard care that failed to comply

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with state and federal law. The USCCB and CHM had a duty to care for Means’ health, which they arguably did not satisfy. Religion does not place an absolute ban on this lawsuit. In the ensuing litigation, the parties should argue about Means’ health. The court should ensure this is a secular lawsuit that can be resolved according to “neutral principles of law,” and not by religious doctrine. See Jones v. Wolf, 443 U.S. 595, 597 (1979); Gen. Conference Corp. of Seventh-Day Adventists v. McGill, 617 F.3d 402, 408 (6th Cir. 2010).

iv The district court wrongly concluded that it lacked jurisdiction over USCCB. We review de novo a dismissal for lack of personal jurisdiction pursuant to Rule 12(b)(2) of the Federal Rules of Civil Procedure. Thomson ex rel. Rakestraw v. Toyota Motor Corp. Worldwide, 545 F.3d 357, 360 (6th Cir. 2008). To establish personal jurisdiction over a defendant, plaintiff must prove two things. First, that Michigan state law accords personal jurisdiction over a defendant. Second, that extending jurisdiction is consistent with the due process guarantees of the Fourteenth Amendment to the US Constitution. See, for example, Beydoun v. Wataniya Rests. Holding, Q.S.C., 768 F.3d 499, 504 (6th Cir. 2014) (quoting Neogen Corp. v. Neo Gen Screening, Inc., 282 F.3d 883, 888 (6th Cir. 2002) (“A federal court’s exercise of personal jurisdiction in a diversity of citizenship case must be both (1) authorized by the law of the state in which it sits and (2) in accordance with the Due Process Clause of the Fourteenth Amendment.”). The Michigan long arm statute gives the Court jurisdiction over this case. Mich. Comp. Laws § 600.715 gives jurisdiction to defendant’s activities that “were either within Michigan or had an in-state effect.” Neogen, 282 F.3d at 888. The Michigan statute gives jurisdiction to the “doing or causing any act to be done, or consequences to occur, in the state resulting in an action for tort.” Mich. Comp. Laws § 600.715(2). USCCB’s affirmative activity of promulgating policies dictating the medical treatment to be provided by Catholic hospitals – in Michigan and elsewhere – caused the harm to Means by requiring that MHP pursue religion-based, anti-health policies within Michigan. That puts its conduct within jurisdiction of Michigan’s laws. The Supreme Court has observed that the exercise of jurisdiction must not offend “traditional notions of fair play and substantial justice.” Neogen, 282 F.3d at 889 (quoting Int’l Shoe Co. v. Washington, 326 U.S. 310, 316 [1945]).

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This court has held that plaintiffs must meet the three criteria used for establishing due process under the Fourteenth Amendment: First, the defendant must purposefully avail himself of the privilege of acting in the forum state or causing a consequence in the forum state. Second, the cause of action must arise from the defendant’s activities there. Finally, the acts of the defendant or consequences caused by the defendant must have a substantial enough connection with the forum state to make the exercise of jurisdiction over the defendant reasonable.

S. Mach. Co. v. Mohasco Indus., Inc., 401 F.2d 374, 381 (6th Cir. 1968); Neogen, 282 F.3d at 890; Beydoun, 768 F.3d at 505. The plaintiff has proved all three requirements in this case. Moreover, allowing jurisdiction over USCCB would not offend “traditional notions of fair play and substantial justice.” Int’l Shoe Co., 326 U.S. at 316. First, the defendants purposefully availed themselves of the privilege of acting in Michigan. The ERD specifically mandates “Catholic health care services [to] adopt the[] Directives as policy, require adherence to them within the institution as a condition for medical privileges and employment, and provide appropriate instruction regarding the Directives for administration, medical and nursing staff, and other personnel.” ERD Dir. 5, p. 12 (2009). If a hospital is to be defined as Catholic, it must subscribe to and obey the ERD. If the hospital does not do so, it is no longer Catholic. For example, when Bishop Thomas J. Olmsted of Phoenix, Arizona, revoked St. Joseph’s Hospital and Medical Center’s Catholic status, he criticized the hospital’s actions on “contraceptive counseling, provision of various forms of contraception, voluntary sterilization and abortions” as inconsistent with the ERD. See Bishop Olmsted Revokes Phoenix Hospital’s Status as Catholic Facility, Catholic Review (Jan. 19, 2012), www.archbalt.org/bishop-olmsted-revokes-phoenix-hos pitals-status-as-catholic-facility/. The USCCB has set the ERD rules for all its hospitals. During the 1960s, disagreement about Catholic health care arose in different institutions around the country. The bishops opposed such “geographic morality,” instead believing that all Catholic institutions must follow the same Catholic rules. Therefore, the National Conference of Catholic Bishops (NCCB), who today are known as the USCCB, “compose[d] and promulgate[d] a set of Directives that would be uniform for the entire country,” thus ending geographic morality. See Kevin D. O’Rourke, Thomas Kopfensteiner, & Ron Hamel, A Brief History: A Summary of the Development of the Ethical and Religious Directives for Catholic Health Care Services, Health Progress 18, 19 (Nov.– Dec. 2001). The rules themselves require the USCCB to review them

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“periodically.” ERD at 4. The bishops wrote and approved the ERD text with the understanding that their directives would dictate the medical treatment received by patients in Catholic hospitals, including those in Michigan. In doing so, they could reasonably expect to be haled into court in the jurisdictions, including Michigan, where patients’ medical treatment is dictated by the directives they have promulgated. Our cases have held that defendants do not have to be physically present within the state for jurisdiction to occur. Instead, the “soliciting of insurance by mail, the transmission of radio broadcasts into a state, [] the sending of magazines and newspapers into a state,” and interactive websites constitute business within a state even though the defendants were not physically present there. S. Mach., 401 F.2d at 382; Neogen, 282 F.3d at 890. The USCCB vigorously promoted the reign of its directives in Michigan. As expected, CHM adopted them in Michigan, just as other hospital associations did throughout the country. The vigor of the USCCB’s affirmative activities meets the first, purposeful availment requirement of our due process law. Second, Means’s court action arose from USCCB’s actions in Michigan. The bishops’ promulgation of and teachings about the ERD emphasized that they must be adopted and obeyed by Michigan Catholic hospitals. The documents themselves require all Catholic institutions to obey them. The USCCB insisted that all Catholic hospitals, including the Michigan ones, must follow the ERD. Therefore, Means’s injuries arose from the effects of USCCB’s activities in Michigan. Third, USCCB’s activities requiring the ERD to be adopted by Catholic hospitals had a substantial connection with Michigan. The ERD set the policy for all the Catholic institutions in that state. According to ERD’s Directive 45: Abortion (that is, the directly intended termination of pregnancy before viability or the directly intended destruction of a viable fetus) is never permitted. Every procedure whose sole immediate effect is the termination of pregnancy before viability is an abortion, . . .Catholic health care institutions are not to provide abortion services, even based upon the principle of material cooperation. In this context, Catholic health care institutions need to be concerned about the danger of scandal in any association with abortion providers.

ERD, Dir. 45, at 26. It was because of the ERD policy that Means was not provided medically appropriate reproductive care, including abortion-related health care. Moreover, the Directives require that USCCB retain constant control over the Directives’ teaching. See id. at 4 (“the Directives will be reviewed

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periodically by the United States Conference of Catholic Bishops. . ., in the light of authoritative church teaching, in order to address new insights from theological and medical research or new requirements of public policy.”) As in Neogen, USCCB “reasonably expect[] to conduct a given level of business in Michigan year after year.” Neogen, 282 F.3d at 891. By setting hospitals’ policies through the ERD, USCCB exercised “substantial control” over the medical conduct that occurred in Michigan’s Catholic hospitals, including MHP. S. Mach., 401 F.2d at 385. This is not a situation where distant foreigners had no real contact with the state because their action occurred overseas. See, for example, Beydoun; See, Inc. v. Imago Eyewear Pty, Limited, 167 Fed. Appx. 518 (2006). Instead, USCCB had substantial connection with Michigan for the courts to have jurisdiction over them. Thus, Means’ negligence lawsuit may proceed against both USCCB and CHM.

v The district court mistakenly dismissed this lawsuit, arguing that tort law did not protect Means against the harms that occurred to her, and dismissing the case for jurisdictional reasons and on ecclesiastical abstention grounds. In contrast, we conclude that this lawsuit can proceed to trial. The trial is not a religious dispute. It should focus on the alleged medical harm caused to Means by these religious policies, which may not take absolute priority over women’s health. The parties’ lawsuit should focus on the defendants’ decisions about the plaintiff’s health care and plaintiff’s health status. That is not a religious dispute, but one that can be resolved according to neutral principles of law.

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14 Commentary on Does v. Gillespie elizabeth kukura

background In their rewritten opinion of Does v. Gillespie,1 Professors Jennifer Oliva and Melissa Alexander, writing as Judges Oliva and Alexander, tackle the flawed reasoning of the original decision, which made the Eighth Circuit an outlier in approving Arkansas’ termination of Planned Parenthood from the state’s Medicaid program. At issue in this case – and others like it winding their way through the federal courts in recent years – is a provision in the Medicaid Act that guarantees an enrollee the right to obtain medical care from any provider “qualified to perform the service or services required . . . who undertakes to provide [the beneficiary] such services.”2 Known as the “free-choice-of-provider” provision, Section 23(A) of the statute protects Medicaid beneficiaries from government interference with their decision regarding where to seek care. Medicaid is the largest public health insurance program for low-income people in the United States.3 Covering one in five low-income Americans, Medicaid serves individuals who lack access to other affordable coverage, limiting out-of-pocket costs to enrollees and serving as the primary source of long-term care coverage.4 The joint federal state program initially focused on low-income parents and children, as well as poor elderly and blind people, and people living with disabilities. Eligibility categories have expanded over time with significant variation among states, in part because only some states opted to extend Medicaid coverage to more low-income nonelderly adults 1 2 3 4

867 F.3d 1034 (8th Cir. 2017). 42 U.S.C. § 1396a(a)(23)(A). 42 U.S.C. §§ 1396 et seq. Robin Rudowitz et al., 10 Things to Know about Medicaid: Setting the Facts Straight, Kaiser Family Found. (Mar. 6, 2019), [https://perma.cc/VQH2-PVV2].

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under the ACA.5 The elderly and people with disabilities represent approximately one in four enrollees, while children account for more than forty percent of all Medicaid beneficiaries.6 Medicaid enables access to important lifesaving and health-promoting care to people for whom private health insurance is prohibitively expensive, including covering almost half of all births in the United States.7 At its core, Medicaid serves the health needs of stigmatized and vulnerable populations. The US health care system relies on privatized forms of delivering care and paying for medical services out-of-pocket is unaffordable to many. The Medicaid-enrolled population represents people who would otherwise be excluded from the health care system. This includes people who experience significant health disparities due to poverty, racism, disability, and other forms of marginalization – some of which are compounded by generations of poverty within a family having led to neglect of basic health care needs. The Medicaid-enrolled population includes those with the fewest resources in American society and those who are underrepresented in democratically elected government and face barriers to justice through the court system. Against this backdrop, Planned Parenthood affiliates around the country operate clinics that specialize in family planning and reproductive health care, contracting with state Medicaid programs to provide low-cost services to individuals covered by public health insurance. Specialized family planning clinics, such as those operated by Planned Parenthood affiliates, play a critical role in serving the health care needs of Medicaid enrollees. Research suggests that six in ten women receiving contraceptive care at a family planning clinic rely on the clinic as their usual source of health care, while four in ten women report it is their sole source of care.8 Arkansas is no exception. As of July 2020, Planned Parenthood serves women, men, and teens at only one location in Little Rock. When there were two locations open, it was providing 1,000 health care visits and more than 1,100 prescriptions for over 500 Medicaid patients annually.9 Those clinics offer physical exams, cancer screenings, STI testing and treatment, and contraception and contraceptive counseling10 – critical health care services in a state where 5 6 7 8

9

10

Id. Id. Id. Amicus Br. of National Health Law Program et al. at 3, Does v. Gillespie, 867 F.3d 1034 (8th Cir. 2016) (“Amicus Brief”). Planned Parenthood Ark. & E. Okla. v. Selig, 2015 U.S. Dist. LEXIS 146466, at *4 (E.D. Ark. 2015). Appellees’ Br. at 3, Gillespie, 867 F.3d 1034 (8th Cir. 2016) (“Appellee Brief”).

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fifty-five percent of pregnancies are unintended.11 Although Planned Parenthood is not the only provider of publicly funded reproductive health care in the state, it offers a broader array of contraceptive methods than other clinics, enabling people to find and secure the method that works best for their health and personal circumstances, including highly effective forms of long-acting reversible contraceptives (LARCs).12 Some – but not all – Planned Parenthood clinics provide abortion care. However, where abortion services are available, they are excluded from Medicaid coverage under a federal law first enacted in 1977 and known as the Hyde Amendment, unless the covered patient falls into one of the law’s narrow exceptions or the state allocates its own funds to pay for Medicaid coverage of abortion.13 Identifying an opportunity to advance an anti-abortion political agenda, some states have used participation in their Medicaid program to strike an economic blow at Planned Parenthood by attempting to end public funding that pays for all health care services provided at Planned Parenthood clinics. In August 2015, Arkansas Governor Asa Hutchinson directed the Arkansas Department of Human Services (ADHS) to terminate its Medicaid provider agreements with Planned Parenthood of Arkansas & Eastern Oklahoma, doing business as Planned Parenthood of the Heartland (PPH). In response, PPH and three patients turned to the courts to force the state to abide by the free-choice-of-provider requirement under the Medicaid Act and maintain PPH as an option for Arkansan Medicaid recipients seeking contraception and other reproductive health care.

original opinion In the original Gillespie decision, the court allowed Arkansas to proceed with its exclusion of Planned Parenthood despite the free-choice-of-provider provision. The patients had sued ADHS under 42 U.S.C. § 1983, claiming that ADHS had violated the patients’ federal right under the Medicaid Act to choose any “qualified” provider offering the relevant health care services. In order to prevail on their § 1983 claim, the Plaintiffs had to show that Congress

11 12

13

Amicus Brief, supra note 12, at 4. Amicus Brief, supra note 12, at 5–6 (noting that 95% of Planned Parenthood clinics offer LARCs, compared to 59% of health departments and FQHCs, and 70% of other publicly funded centers). See Alina Sagalnicoff et al., The Hyde Amendment and Coverage for Abortion Services, Kaiser Family Found. (Jan. 24, 2020), [https://perma.cc/GL6D-9CCF] (explaining that the Hyde Amendment is a temporary budget rider that Congress has renewed every year since 1977).

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clearly intended to create an individual right to enforce the free-choice-ofprovider provision. The court viewed the Plaintiffs’ claim skeptically, finding that because the statutory language calls on the Department of Health and Human Services (HHS) to approve any state plan that complies with Section 23(A), the Medicaid Act concerns itself with the federal agency and not with the program beneficiaries for whom the entire statutory regime is designed. Framing the statutory language in this way, the court concluded that “the focus of the Act is two steps removed from the interests of the patients who seek services from a Medicaid provider” and thus the statute does not create an enforceable federal right for individuals.14 In addition, the court held that the existence of other mechanisms for enforcing a state’s compliance with the Medicaid Act means Congress did not intend for individuals to be able to bring § 1983 claims to vindicate their rights as Medicaid beneficiaries.15 In particular, the court was satisfied that the ability of providers to appeal an exclusion from the program and the ability of the Secretary of HHS to withhold federal funds entirely from a noncompliant state would protect individual beneficiaries, even though such solutions would leave protection of beneficiaries’ rights at the discretion of providers or the Secretary – actors whose interests may not align perfectly with individual Medicaid recipients seeking reproductive health care services.16 Ultimately, the court concluded that Section 23(A) did not enable individual Medicaid beneficiaries to sue to enforce their rights under federal law, making the plaintiffs unlikely to prevail in their lawsuit and thus insulating the state from a legal challenge to its termination decision. In reaching this decision, the court engaged in a cramped reading of the statutory language and faulted PPH for not appealing the termination decision before suing – even though a plaintiff is not required to exhaust administrative remedies before filing this type of lawsuit (and an administrative appeal would provide no path for the individual plaintiffs to seek recourse).

feminist judgment The rewritten majority opinion corrects the original court’s mistakes by faithfully applying the test laid out in the controlling authority and using the underlying purpose of the Medicaid Act to guide its interpretation. Oliva and 14 15 16

Gillespie, 867 F.3d at 1041. Id. Id. at 1046.

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Alexander conclude that Section 23(A) unambiguously confers an individual right on Medicaid beneficiaries to select any “qualified” provider, thus enabling plaintiffs to sue to enforce their rights under the Act, and then finds that PPH is likely to prevail in its claim that ADHS unlawfully terminated PPH from the state Medicaid program. In doing so, the authors rely not only on the clear language of the statute itself, but also on the Medicaid program’s goal of providing access to health insurance for vulnerable individuals. In light of the fact that Medicaid’s role as a health care safety net for low-income and marginalized populations is reflected in both the original 1965 legislation and reaffirmed in the ACA’s 2010 Medicaid expansion, the rewritten opinion takes a clear-eyed view of why a private right of enforcement under Section 23 (A) ensures state accountability and is essential to fulfilling the program’s goals. In short, a private right of enforcement is fundamental to the broader statutory scheme that provides access to health care for those who are marginalized due to poverty or disability. The Medicaid Act reflects lawmakers’ recognition of structural factors that sustain health inequities and contribute to the inequality experienced by lowincome people, people of color, people with disabilities, sexual minorities, and other marginalized populations. By rewriting Gillespie through a feminist lens, the authors consider the substantive implications of the court’s decision on the procedural question, drawing on critical tools provided by feminist legal theory for analyzing inequality and fairness. They recognize the critical safety net Medicaid provides for individual beneficiaries, along with secondary impacts on enrollees’ families and the broader population. And, ultimately, the authors conclude that eviscerating the free-choice-of-provider provision by foreclosing a private right of enforcement for Medicaid enrollees further perpetuates the health disparities and inequality experienced by vulnerable and marginalized populations.

discussion The feminist reimagining of Gillespie invites readers to consider both the immediate impact and potential future implications of a decision to exclude Planned Parenthood from participation in Medicaid in violation of the statute. First, Oliva and Alexander emphasize the lived experience of Medicaid beneficiaries who rely on Planned Parenthood for basic health care needs. Second, by engaging more deeply – and honestly –with the facts of the case than the original opinion, Oliva and Alexander offer a lesson about the importance of applying an intersectional lens to efforts to increase access to health care and address health inequities. Third, they make visible the

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influence of politics and ideology behind the state’s exercise of power in targeting Planned Parenthood for exclusion, showing how anti-abortion political power can exacerbate structural discrimination through state health care policymaking. Finally, they open the door to consideration of how these concepts apply in other areas of reproductive health care policy.

Feminism and the Power of Lived Experience One noticeable difference between the original Gillespie opinion and the feminist rewrite is the attention directed to the actual experiences of Medicaid beneficiaries, especially those patients who rely on Planned Parenthood for basic health care needs. This approach reflects one of the critical contributions of feminism: to build power by listening to the stories of those impacted by injustice and learning from their experiences. In the late 1960s and early 1970s, consciousness-raising groups encouraged women to share their personal stories of living in a society with restrictive gender roles.17 The sharing of stories led participants to articulate a political critique that cut across individual experiences, spurring the development of critical theories and practical strategies for resistance to gender-based oppression.18 Feminist legal theory demands that society pay attention to how the law impacts people’s lives differently depending on their identities and circumstances, including factors such as gender and sexuality, as well as racial and ethnic background, geography, wealth, age, and disability. Under a feminist analysis, lived experience is an essential source of information and power.19 In their rewritten opinion, Oliva and Alexander shine a light on the experiences of Planned Parenthood patients, articulating the reasons why people seek care there and how their health care needs are not met elsewhere. They recognize that it is imperative to understand the individual experiences of Medicaid recipients when seeking health care – particularly reproductive health care – in order to determine whether the court’s decision effectuates the broader purpose of the statute. This recognition prompts the authors to ask what health care access for Medicaid beneficiaries would look like if ADHS’s termination of Planned Parenthood is allowed to stand unchallenged by the people most directly affected. 17

18 19

Brian Norman, The Consciousness-Raising Document, Feminist Anthologies, and Black Women in Sisterhood Is Powerful, 27 Frontiers: J. Women Stud. 38 (2006) (noting the consciousnessraising group “is a hallmark in the rise of the modern feminist movement”). Id. See Patricia A. Cain, Feminist Legal Scholarship, 77 Iowa L. Rev. 19, 20 (1991).

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Examining the realities of health care access for typical Medicaid beneficiaries reveals how practical challenges – such as lack of transportation, inconvenient clinic hours, long waits for appointment times, the need to make separate trips to fill prescriptions, and language barriers – interfere with people’s ability to care for their reproductive health. The district court in Gillespie found that patients prefer PPH as their reproductive health care provider due to the ease of scheduling appointments, a welcoming atmosphere and nonjudgmental staff, their positive experiences receiving the information they need, and the availability of walk-in services, which makes care available for patients with inflexible work schedules and childcare constraints.20 In the universe of publicly funded clinics, Planned Parenthood is distinguished for the accessibility and convenience of its services. Planned Parenthood clinics are more likely to dispense contraceptives on-site rather than require patients to make a separate visit to a pharmacy, typically have shorter wait times than other providers, and are also more likely than other publicly funded clinics to offer same day, evening, and weekend appointments.21 In addition, PPH provides care in English and makes interpretation available for other languages.22 For people who have to travel long distances to a clinic, who rely on public transportation, or who work unpredictable schedules in the retail and service industries, the fact that Planned Parenthood prioritizes accessibility means that low-income patients are more likely to get the care they need. By focusing on how Planned Parenthood eases barriers to accessing care, the rewritten opinion centers the experiences of Medicaid beneficiaries, illustrating why it is important that such individuals retain the right to hold the state accountable for violating the statute. Planned Parenthood also serves the Medicaid Act’s goal of addressing the health needs of marginalized populations by welcoming transgender patients, acknowledging that transgender people have the same basic health care needs as cisgender people, including STI testing, birth control, physical exams, and other sexual and reproductive health services.23 Although PPH is not one of the Planned Parenthood affiliates that provides hormone treatment for transitioning patients, the fact that its staff is trained to understand the needs of transgender patients and can help connect patients in need of 20

21 22 23

Planned Parenthood Ark. & E. Okla. v. Selig, 2015 U.S. Dist. LEXIS 146466, at *8 (E.D. Ark. 2015). Amicus Brief, supra note 12, at 6–8. About This Health Center, Planned Parenthood, [https://perma.cc/QAE4–77QY]. What Do I Need to Know about Trans Health Care?, Planned Parenthood, [https://perma .cc/SNF7-WRER].

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gender-affirming treatment with competent physicians removes a tremendous barrier to care for a population that faces high rates of health care discrimination and under-treatment.24 By examining the conditions under which individual Medicaid beneficiaries obtain care and the accessibility of reproductive health care services available at non-PPH clinics, the rewritten opinion highlights what will be lost if the state is permitted to whittle away at the concept of provider choice enshrined in the Medicaid Act. This focus also reveals that other avenues of enforcement provided by the statute – such as HHS defunding of the entire state plan – do not actually vindicate the right provided by Section 23(A). In this way, Oliva and Alexander expose the flimsiness of the alternative approach on which the legal reasoning of the original opinion rested, instead modeling legal reasoning that properly considers the practical impact of allowing the state’s decision to stand.

Intersectionality and Compounding Barriers to Health Care By grappling with the actual experiences of Medicaid beneficiaries when seeking services, the rewritten opinion implicitly invites an intersectional analysis of the barriers to accessing health care. Intersectionality theory offers a framework for understanding how individuals and groups are affected by multiple forms of discrimination and disadvantage that compound the inequality they face in society.25 When people live with overlapping and intersecting systems of privilege and oppression, attempts to advance equality and justice by intervening in only one area – for example, by attacking patriarchal structures that sustain gender-based oppression without accounting for the role of racism and white supremacy in reinforcing patriarchy – mean that the strategy is likely to fall short. In the Medicaid context, the multiple forms of disadvantage and vulnerability many beneficiaries experience can compound barriers to health care access. Although the architects of the Medicaid Act and the ACA did not explicitly use the language of intersectionality, the creation and expansion of this critical safety net health insurance program reflect clear recognition of how health inequities become further entrenched for populations dealing with multiple 24

25

See Safer et al., Barriers to Health Care for Transgender Individuals, 23 Curr. Opin. Endocrinol. Obes. 168 (2016) (noting that lack of providers with expertise relating to transgender patients represents the single largest barrier to accessing health care). See Kimberlé Williams Crenshaw, Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color, 43 Stanford L. Rev. 1241 (1991).

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forms of oppression based on their marginalized identities and life circumstances. For example, many adolescents face obstacles obtaining evidencebased information about contraception, and that task may be even harder for a teen from a poor family whose school has eliminated any meaningful sex education and who lacks a regular doctor.26 Maintaining sexual health and avoiding pregnancy may be even harder still if that person identifies as LGBTQ+, given existing gaps in the provision of competent health care for sexual minority and gender-nonconforming patients.27 When an individual’s identity includes multiple axes of stigma or marginalization, the barriers to health care access are compounded. Society is evolving to recognize how intersectionality shapes the needs of vulnerable populations, but we are far from a legal and policy landscape in the health care arena that adequately accounts for intersecting and layered forms of oppression. Therefore, it is imperative that judges preserve access to the courts for individual Medicaid beneficiaries to hold the state and federal government accountable for fulfilling the goals of the Medicaid Act. As Oliva and Alexander recognize, without a private right of enforcement, people whose intersectional identities shape their health care needs in unique ways will be unable to voice their objections to changes that degrade their access to health care.

Politics, Power and Structural Discrimination A central insight of feminist legal theory is that examining differences in society’s treatment of women and men reveals the extent to which society’s norms adopt default male perspectives and this bias is embedded within legal systems that shape everyday life.28 Left unchecked, gender bias in the exercise of political and legal power creates and reinforces structural discrimination that causes social goods to be distributed inequitably and perpetuates the oppression of vulnerable and disfavored groups. In their rewritten opinion, Oliva and Alexander challenge the role of anti-abortion politics in prompting ADHS’s decision to terminate PPH as a Medicaid provider, prohibiting state

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See, e.g., American Adolescents’ Sources of Health Information, Guttmacher Inst. (Dec. 2017), [https://perma.cc/583F-RQAH] (reporting significant decline in the number of adolescents who reported having received formal instruction about birth control). Kevin L. Ard et al., Improving the Health Care of Lesbian, Gay, Bisexual and Transgender People: Understanding and Eliminating Health Disparities, Fenway Inst., [https://perma.cc/ E73R-EMQ5]. Martha Chamallas, Introduction to Feminist Legal Theory 6–8 (2003).

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leaders from infusing Medicaid policy with a political ideology that harms women and all those who rely on Medicaid as a health care safety net. The decision to exclude PPH followed the release of deceptively edited and subsequently discredited videos by anti-abortion activists purporting to show other Planned Parenthood affiliates engaging in unlawful fetal tissue donation after performing abortions.29 The Arkansas Governor’s press release refers to “the recent revelations on the actions of Planned Parenthood” as the inspiration for ending PPH’s Medicaid contract, stating that PPH “does not represent the values of the people of our state and Arkansas is better served by terminating any and all existing contracts with them.”30 At no point did the state explain or justify the termination on the basis of the quality of services PPH provides; in fact, the quality of care provided and PPH’s ability to continue providing health care to non-Medicaid patients were never in question as the dispute over the Medicaid contract unfolded. The pretextual nature of the Arkansas Governor’s justification for precluding PPH from serving Medicaid enrollees is underscored by the fact that PPH operates completely independently of Planned Parenthoods in other states31 and has itself never participated in fetal tissue donation,32 as well as the fact that multiple state investigations found no wrongdoing by any Planned Parenthood affiliate.33 The original decision apparently ignored all of these facts, simply noting—in the absence of any actual evidence offered by ADHS—that the parties “dispute” whether the videos represent any unlawful or unethical conduct.34 The Eighth Circuit’s actual opinion took Governor Hutchinson’s justifications at face value, avoiding explicit acknowledgment of the anti-abortion politics driving the Medicaid termination while allowing them to drive the legal reasoning permitting the termination to stand. In contrast, the rewritten opinion refuses to allow anti-abortion animus to supplant reasoned decisionmaking about health care quality in the state’s governance of the Medicaid program. By exposing the improper basis for ADHS’s termination, Oliva and Alexander reject a form of structural discrimination – preventing political

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Jackie Calmes, With Planned Parenthood Videos, Activist Ignites Abortion Issue, N.Y. Times (July 21, 2015), [https://perma.cc/5TSY-6KXC]. Press Release, “Governor Asa Hutchinson Directs DHS to End Contract with Planned Parenthood” (Aug. 14, 2015), [https://perma.cc/9P5K-FRUS]. Appellee Brief, supra note 14, at 4–5. Planned Parenthood Ark. & E. Okla. v. Selig, 2015 U.S. Dist. LEXIS 146466, at *11 (E.D. Ark. 2015). Id. at *12. Does v. Gillespie, 867 F.3d 1034, 1038 (8th Cir. 2017).

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leaders from using their power to effectuate policies that further discriminate against disfavored groups, such as those who seek abortion services from Planned Parenthood or individuals who rely on Planned Parenthood for Medicaid-covered reproductive health care more broadly. Structural discrimination has long been a feature of reproductive health policy, especially within the Medicaid program. In 1976, Representative Henry Hyde highlighted his contribution to embedding discriminatory policies within the law when he acknowledged publicly that although he would prefer to prohibit abortion access entirely, he would settle for restricting abortion coverage for low-income women reliant on Medicaid because he was powerless to curtail abortion more broadly.35 Hyde’s strategy illustrates the phenomenon of abortion exceptionalism, where abortion services are segregated from other forms of routine reproductive health care and treated distinctly – and more harshly – as a matter of a law and policy.36 Abortion exceptionalism perpetuates stigma, conveying a powerful social message that people who seek abortions should be ashamed and deserve condemnation. Likewise, the disparate treatment of abortion as a disfavored form of health care means that Planned Parenthood is tainted by its association with abortion provision, despite its long-standing record of providing a range of high quality, affordable, and accessible health care services. Although not all Planned Parenthood affiliates provide abortion and abortion represents less than four percent of the services provided,37 its status as an abortion provider has made Planned Parenthood and Planned Parenthood patients targets for discriminatory treatment. The original opinion represented an extension of the discriminatory logic of Harris v. McRae,38 the Supreme Court’s decision upholding the Hyde Amendment. In Harris, the Court recognized the right of Medicaid recipients to receive Medicaid benefits but allowed the federal government to exclude one particular form of reproductive health care – abortion. Similarly, by rejecting a private right of enforcement under Section 23(A), the Eighth Circuit recognized the Medicaid Act’s free-choice-of-provider provision but allowed the state to exclude one particular provider from the program without

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See Jill E. Adam et al., A Travesty of Justice: Revisiting Harris v. McRae, 21 Wm. & Mary J. Women & L. 5, 41–42 (2014). Caitlin E. Borgmann, Abortion Exceptionalism and Undue Burden Preemption, 71 Wash. & Lee L. Rev. 1047, 1048 (2014) (describing “abortion exceptionalism” as the “tendency of legislatures and courts to subject abortion to unique, and uniquely burdensome, rules”). Planned Parenthood, Planned Parenthood Annual Report 2017-–2018 23 (reporting abortion services comprised 3.4% of medical services provided by affiliates). 448 U.S. 297 (1980).

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accountability to the program’s beneficiaries, who are granted rights under the statute. Ultimately, ADHS’s action constitutes a bias-infused decision – a way for state leaders to advance their regressive political vision on the backs of women, poor people, and other vulnerable populations. By sanctioning the state’s conduct, the Eighth Circuit invited further use of Medicaid policy as a blunt instrument to accomplish unrelated political goals, whether antiimmigrant, anti-trans, or targeting other marginalized minorities in the future. But Oliva and Alexander envision a different world, one where vulnerable people are protected from becoming collateral damage in broader social and political fights. This vision requires that Medicaid beneficiaries have access to judicial oversight to ensure states are using federal funds in compliance with the Medicaid Act, preventing creation of a gap between rights guaranteed on paper and rights attainable in practice. The rewritten opinion recognizes that a private right of enforcement under Section 23(A) is an essential tool against forms of structural discrimination that enable the powerful to erode the rights of the disfavored and dependent in service of a broader political agenda.

Implications of a Feminist Gillespie for Other Reproductive Health Restrictions The rewritten opinion recognizes that in order to prevent powerful actors from infusing their biases into the structures and programs we use to distribute collective social goods, we must empower affected individuals to influence policymaking and provide a check on abuses of power. In this case, the private right of enforcement under Section 23(A) is a tool to empower affected individuals, and the authors present an approach to effectuating the purpose of the Medicaid Act that is shielded from anti-abortion politics masquerading as neutral interpretation. But the legal reasoning Oliva and Alexander undertake in the rewritten Gillespie opinion has broader implications beyond Arkansan Medicaid participants. The need for bold judicial decision-making that reflects feminist values of equality, autonomy, and justice continues in the face of new forms of abortion exceptionalism. For example, in March 2019, the Trump administration published new federal regulations that require coercive counseling for people seeking health care from Title X-funded family planning providers.39 Known as a “domestic gag rule,” the regulations eliminated the 39

Compliance with Statutory Program Integrity Requirements, 84 Fed. Reg. 42, 7714 (Mar. 4, 2019). In February 2020, the Ninth Circuit Court of Appeals rejected legal challenges to implementation of these rules. California v. Azar, 950 F.3d 1067 (9th Cir. 2020).

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program’s long-standing requirement that all pregnant patients seeking care be offered non-directive pregnancy options counseling, which includes information about parenting, adoption, and abortion.40 The new rules also prohibit referral for abortion services, contrary to existing evidence-based clinical recommendations for providing care under Title X, and contain other detailed restrictions governing how providers may communicate health care information to patients.41 In fact, the regulations prohibit “any counseling . . . as an indirect means of encouraging or promoting abortion as a method of family planning.”42 Adopted to serve the Trump administration’s anti-abortion agenda, these regulations have the potential to inflict significant damage. They interfere with autonomy and patient decision-making, coercing people into carrying pregnancies they do not want by eliminating access to abortion-related information, counseling, and referrals for people receiving care at Title X-funded clinics. By placing legal restrictions on how providers interact with their patients, the regulations also undermine trust in health care providers. Furthermore, fortyone percent of patients receiving Title X-funded contraceptive care obtain that care from Planned Parenthood affiliates, making this another attack on Planned Parenthood with significant additional collateral damage.43 Judicial intervention is necessary to protect low-income people reliant on publicly funded clinics for their reproductive health care from government interference with their constitutional right to terminate a pregnancy. Elsewhere, courts are providing an important guardrail against conservative attempts to institute further restrictions on Medicaid beneficiaries with the ultimate political goal of reducing the size of the Medicaid program. For example, in March 2019, in Stewart v. Azar,44 a federal district court rejected – for the second time – a waiver that the HHS granted Kentucky to implement a work requirement for Medicaid recipients. Rules that require that Medicaid recipients to provide evidence they are employed, preparing for a job, or volunteering in order to obtain coverage represent a new attack on the health

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Kinsey Hasstedt, What the Trump Administration’s Final Regulatory Changes Mean for Title X, Health Affairs Blog (Mar. 5, 2019), [https://perma.cc/VDX3-Y7JE] (noting that referrals must include prenatal care providers but must not indicate which sites offer abortion services). Id. 42 C.F.R. § 59.14 (2019). In addition, the new rules no longer require providers to offer the full range of contraceptive options, regardless of patient preference or evidence about effectiveness. Hasstedt, supra, note 40. Jennifer J. Frost et al., Publicly Funded Contraceptive Services at US Clinics, 2015, Guttmacher Inst. (Apr. 2017), [https://perma.cc/SE2L-6NYX]. 366 F. Supp. 3d 125 (D.D.C. 2019).

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care social safety net mounted by ideological conservatives who seek to shrink the amount of government support available to low-income people. The Stewart court faulted the federal government for failing to consider whether the waiver served the Medicaid Act’s purpose of providing affordable health coverage to vulnerable populations.45 In particular, the court found that HHS failed to offer evidence it had weighed the consequences of lost coverage for at least 95,000 people against measurable gains in coverage, care, or sustainability of the program.46 Subsequently, federal district courts have struck down several other Medicaid waivers allowing states to implement a work requirement,47 and the court’s rejection of Arkansas’ waiver was affirmed on appeal.48 Other states that have received a waiver have delayed implementation of the new rules pending the outcome of these lawsuits.49 The Stewart court prevented the government from undermining the central purpose of the Medicaid Act when enacting new rules or making policy changes. Such judicial oversight protects Medicaid as a meaningful safety net and ensures equal treatment of all categories of beneficiaries under the statute. Similarly, Oliva and Alexander’s rewritten Gillespie opinion offers a model of well-reasoned legal decision-making that prevents government exercise of power at the expense of vulnerable and marginalized populations – serving the broader goals of advancing substantive equality and justice.

DOES V. GILLESPIE, 867 F.3D 1034 (8TH CIR. 2017)

jennifer oliva, circuit judge, and melissa alexander, circuit judge, delivered the opinion of the court The question presented is whether to affirm an injunction prohibiting a state department of health from suspending Medicaid payments to Planned Parenthood of the Heartland (PPH) when the department based its suspension on PPH’s “values” and/or association with distinct entities. The injunction rests on beneficiaries’ 42 U.S.C. § 1983 claim that the Arkansas Department of 45 46 47

48 49

Id. at 143–146. Id. at 142, 149–150. Order, Philbrick v. Azar, 397 F. Supp. 3d 11 (D.D.C. 2019) (striking down New Hampshire’s work requirement); Order, Young v. Azar, No. 19-3526 (D.D.C. Mar. 4, 2020) (striking down Michigan’s work requirement). Gresham v. Azar, 950 F.3d 93 (D.C. Cir. 2020). Medicaid Waiver Tracker: Approved and Pending Section 1115 Waivers by State, Kaiser Family Found., (last visited May 29, 2020) [https://perma.cc/VA9M-E37Q].

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Human Services (ADHS) violated the Medicaid Act’s free-choice-of-provider provision, 42 U.S.C. § 1396a(a)(23)(A) (Section 23(A)). Accordingly, we must first resolve whether beneficiaries have standing to bring such a claim. The free-choice-of-provider provision guarantees Medicaid beneficiaries the right to choose any willing and qualified provider. Congress included this provision in the Medicaid Act to ensure that beneficiaries have the freedom to choose among available providers, just as individuals with private insurance do. Ctrs. for Medicare & Medicaid Servs., CMS Manuals Pub. No. 45 The State Medicaid Manual, § 2100 (last modified Sept. 8, 2005). Practically speaking, beneficiaries’ choices remain limited because many providers choose not to participate in Medicaid due to low reimbursement rates. Nonetheless, the Supreme Court has held that Section 23(A) gives beneficiaries the “absolute right” to choose among willing and qualified providers “without governmental interference.” O’Bannon v. Town Ct. Nursing Ctr., 447 U.S. 773, 785 (1980). Today, this Court joins the Fifth, Sixth, Seventh and Ninth Circuits in holding that, when a state abridges the free-choice-of-provider right, beneficiaries may challenge that state action under 42 U.S.C. § 1983. Recognizing a private right of enforcement for beneficiaries is essential to fulfill the purposes of the Medicaid Act. Congress enacted Medicaid to provide health care to individuals of limited means and “to help [such individuals] attain or retain capability for independence and self-care.” 42 U.S.C. § 1396-1. Unfortunately, this great country has an ignoble history of advancing laws and policies that relegate traditionally marginalized populations to inequitable health outcomes. See, for example, Sec’y Advisory Comm. on Nat’l Health Promotion & Disease Prevention Objectives for 2020, U.S. Dep’t of Health & Hum. Servs., Phase I Reports: Recommendations for the Framework and Format of Healthy People 2020, 28 (2008). “Health disparities adversely affect [those] who have systematically experienced greater social or economic obstacles to health based on their racial or ethnic group, religion, socioeconomic status, gender, mental health, cognitive, sensory, or physical disability, sexual orientation, geographic location, or other characteristic historically linked to discrimination or exclusion.” Id.; see also Angela K. McGowan et. al, Civil Rights Laws as Tools to Advance Health in the Twenty-First Century, 37 Ann. Rev. Pub. Health 185, 188 (2016) (“[H]ealth disparities and discrimination are still pervasive in the United States”). ADHS’s politically motivated termination of PPH from its Medicaid program appears to fit within this inglorious tradition. PPH’s termination jeopardizes the health of many historically disadvantaged, low-income individuals. It unjustly eliminates beneficiaries’ option to seek services from a unique, preferred provider in order to make a value-based statement against abortion.

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ADHS contends that those sacrificed should not have access to the courts, that is, the power to vindicate their free-choice-of-provider rights. We disagree. Accountability offers an essential tool to counter marginalization and to combat health disparities. Denying beneficiaries a private right of action would perpetuate structural violence. In light of the Medicaid Act’s purposes and Section 23(A)’s unambiguous rights-conferring language, we affirm the district court’s determination that beneficiaries have standing to bring 42 U.S.C. § 1983 claims to enforce their free-choice-of-provider right. We likewise affirm the district court’s grant of a preliminary injunction enjoining ADHS from suspending Medicaid payments to PPH for covered services rendered to Medicaid beneficiaries. See Dataphase Sys. Inc. v. CL Sys., 640 F.2d 109, 114 (8th Cir. 1981) (providing the four-factor test for injunctive relief ); Winter v. Nat. Res. Def. Council, Inc., 555 U.S. 7, 20 (2008) (same). Without such an injunction, Arkansas beneficiaries are likely to suffer irreparable harm. Eliminating PPH as a Medicaid provider will disrupt provider-patient relationships and unjustifiably decrease the quantity of available providers. It also would abolish beneficiary access to a unique provider that offers nonjudgmental, culturally competent care as well as a wider range of services, significantly shorter wait times, and more patientcentered practices relative to other providers. Depriving Medicaid beneficiaries of provider choice undervalues these individuals and runs counter to Medicaid’s goal of available, accessible, acceptable, and quality health care. Beneficiaries have established a likelihood of success on the merits. ADHS’s termination of PPH from Arkansas Medicaid for reasons unrelated to PPH’s competency to provide medical services constitutes unlawful governmental interference with beneficiaries’ free-choice-of-provider right. Under the circumstances, the balance of the equities and hardships favor the beneficiaries, and the injunction is in the public interest. The district court properly granted an injunction, safeguarding Medicaid beneficiaries’ federally conferred freechoice-of-provider right.

i factual and procedural background This appeal arises from a class action brought by Planned Parenthood of Arkansas & Eastern Oklahoma, doing business as Planned Parenthood of the Heartland (PPH), Jane Does 1–3, and other similarly situated, Medicaid-insured Plaintiffs against Cindy Gillespie in her capacity as Director of ADHS. PPH is a not-for-profit corporation that operates health centers in Little Rock and Fayetteville, Arkansas. PPH has provided family planning and preventative

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health care services in Arkansas for more than thirty years. Those services include, among other things, breast and cervical cancer screening, physical examinations, contraceptive counseling, smoking cessation assistance, diabetes, high cholesterol, high blood pressure, and anemia screening, and sexually transmitted infection (STI) testing and treatment. PPH also operates a pharmacy on-site that permits patients to automatically refill their birth control prescriptions. PPH participates in the Arkansas Medicaid program and, thereby, delivers medical services to hundreds of low-income Medicaid enrollees each year. During fiscal year 2015, PPH conducted approximately 1,000 health care visits and filled in excess of 1,000 prescriptions for over 500 men, women, and teens enrolled in Arkansas Medicaid. While PPH provides early medication abortions, Arkansas Medicaid does not cover them in virtually all circumstances, and payment for abortion is not at issue in this case. The Plaintiff class includes members who are insured through Arkansas Medicaid and have selected PPH as their preferred provider for Medicaid-covered preventative treatment and reproductive health services. In a letter dated August 14, 2015, ADHS notified PPH that it was terminating PPH’s Medicaid provider agreements effective September 13, 2015. ADHS’s notice letter provided no basis for PPH’s termination. However, Arkansas Governor Asa Hutchinson issued a press release that same day announcing that he had directed ADHS to terminate PPH’s provider agreements because “recent revelations” made it “apparent” that PPH “does not represent the values of the people of our state and Arkansas is better served by terminating any and all existing contracts with them.” Docket No. 12, } 35; Docket No. 45, } 29 (emphasis added). ADHS admits that it issued the termination letter at the direction of Governor Hutchinson, who also ordered the agency to review videos published by an anti-abortion organization, the Center for Medical Progress (CMP). ADHS sent a second notice letter to PPH dated September 1, 2015, which purported to terminate PPH’s Medicaid provider agreements for cause. ADHS based this “for cause” termination on the CMP videos. According to ADHS, those videos constitute “evidence that [PPH] and/or its affiliates are acting in an unethical manner and engaging in what appears to be wrongful conduct.” Docket No. 45, } 39 (emphasis added). PPH has complied with all federal and state laws. The CMP videos neither depict nor discuss PPH. The videos only evidence conduct and statements by other Planned Parenthood providers located in other states. Moreover, governmental investigations in response to the videos have fully vindicated the distinct Planned Parenthood entities actually portrayed in the videos in Georgia, South Dakota, Indiana, Pennsylvania, and Massachusetts. In light

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of these facts, Arkansas’ conduct appears to be provoked by the Governor’s desire to demonize Planned Parenthood and to punish PPH for its association with the organization. PPH remains licensed to provide all health care services at issue to Arkansan citizens. ADHS simply refuses to reimburse PPH for such services when rendered to Medicaid-insured Arkansans. So, despite being labeled “for cause,” ADHS’ affiliation or value-based termination of PPH is not reasonably related to PPH’s professional competency and lacks any credible basis. On September 11, 2015, PPH and Jane Does 1–3 moved for a preliminary injunction preventing ADHS from terminating PPH’s Medicaid provider agreements. While the Complaint also asserts First and Fourteenth Amendment claims, Plaintiffs based their request for injunctive relief on their allegation that ADHS was in violation of the Medicaid Act. Specifically, Plaintiffs argued that ADHS’s termination of PPH, a qualified provider, violates the Act’s free-choiceof-provider provision. After an evidentiary hearing, the district court granted the motion for preliminary injunction but only with regard to Jane Does 1–3. Thereafter, Plaintiffs sought – and the court granted – a motion to certify an Arkansas Medicaid-insured patient class. Then, on September 29, 2016, the court granted the patient class’ motion to expand the preliminary injunction to enjoin ADHS from suspending Medicaid payments to PPH for covered services provided to any class member. In granting the injunctions, the court first held that Medicaid beneficiaries have standing to enforce Section 23(A)’s free-choice-of-provider provision pursuant to 42 U.S.C. § 1983. Then, the court found that Plaintiffs met their burden for the issuance of a preliminary injunction. The district court held that the class is likely to suffer irreparable harm absent injunctive relief because terminating PPH from Arkansas Medicaid would disrupt providerpatient relationships and reduce the class’ access to health care. Even if a sufficient number of alternative providers are available, the court recognized that beneficiaries would be irreparably harmed by losing their choice of provider and by the limited scope of services, less convenient scheduling, referral requirements, and other hurdles imposed by alternative providers. The court also concluded that the class is likely to succeed on the merits of its claim. ADHS’s termination of PPH from Arkansas Medicaid for reasons unrelated to PPH’s fitness to provide covered services constitutes unlawful governmental interference with the class’ free-choice-of-provider rights. Similarly, the balance of the equities favors the Plaintiffs, and the public interest is served by an injunction. ADHS appealed the district court’s grant of injunctive relief. On appeal, we review the district court’s decision to grant the injunction for abuse of discretion. Watkins, Inc. v. Lewis, 346 F.3d 841, 844 (8th Cir. 2003). We review the

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district court’s findings of fact for clear error and questions of law, including the standing issue presented, de novo. Walker v. Maschner, 270 F.3d 573, 576 (8th Cir. 2001). For the reasons set forth below, we affirm.

ii application of law Nearly seventy million low-income Americans rely on Medicaid for affordable access to health care services. Julia Paradise, Medicaid Moving Forward, Henry J. Kaiser Found. (2015). The Medicaid program covers roughly one in five Americans, one in four Arkansans, and nearly half of all births nationwide. Henry J. Kaiser Found., Health Insurance Coverage of the Total Population (2017); Anne Rossier Markus et al., Medicaid Covered Births, 2008 Through 2010, in the Context of Implementation of Health Reform, 23 Women’s Health Issues e273, e275 (2013). The majority of Medicaid-insured patients identify as female (58%) and non-white (60%). U.S. Dep’t Health & Hum. Servs., 2016 CMS Statistics 12 (2016). Twenty-eight percent of individuals who self-identify as lesbian, gay, bisexual or transgender (LGBTQ+) rely on Medicaid coverage, as do more than ten million individuals who identify as having a disability. Id. at 11; Kellan E. Baker et al., The Medicaid Program and LGBT Communities, Ctr. for Am. Progress (Aug. 9, 2016). And at least eleven percent of individuals who self-identify as gender nonconforming rely on public health insurance. Jaime M. Grant et al., Injustice at Every Turn: A Report of the National Transgender Discrimination Survey 77 , Nat’l Ctr. for Transgender Equality and Nat’l Gay & Lesbian Task Force (2011). Medicaid “is a cooperative federal-state program through which the Federal Government provides financial assistance to States so that they may furnish medical care to needy individuals.” Wilder v. Va. Hosp. Ass’n, 496 U.S. 498, 502 (1990). While states enjoy considerable flexibility in developing and administering their Medicaid plans, that latitude is not without bounds. As a condition of receiving federal funds, states must comply with the Medicaid Act’s specifically enumerated requirements. Frew ex rel. Frew v. Hawkins, 540 U.S. 431, 433 (2004) (explaining that “once a State elects to join the program, it must administer a state plan that meets federal requirements”). A The Class Has Standing: Section 23(A) Confers a Private Right of Action on Medicaid Beneficiaries The threshold issue in this case is whether Congress intended to create a federal right for Medicaid beneficiaries to privately enforce one such federal

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condition, the free-choice-of-provider provision. Here, the class seeks to enforce their free-choice-of-provider rights under 42 U.S.C. § 1983, as the Medicaid Act does not specifically include a private remedy. Section 1983 confers a private right of action against anyone who deprives “any citizen of the United States . . . of any rights, privileges, or immunities secured by the Constitution and laws” under the color of state law. 42 U.S.C. § 1983. The statute “authorizes suits to enforce individual rights under federal statutes as well as the Constitution.” City of Rancho Palos Verdes v. Abrams, 544 U.S. 113, 119 (2005). Section 1983’s enforcement authority, however, extends only to “rights” and “not [to] broader or vaguer ‘benefits’ or ‘interests.’” Gonzaga Univ. v. Doe, 536 U.S. 273, 283 (2002). 1 Section 23(A) Satisfies All Three Prongs of the Gonzaga/Blessing Test To determine whether Section 1983 confers a private right on Medicaid beneficiaries to challenge an alleged Section 23(A) violation, we must evaluate whether: (1) Congress intended to create an enforceable federal right; (2) that right “is not so vague and amorphous that its enforcement would strain judicial competence;” and (3) the statutory provision at issue “impose[s] a binding obligation on the States.” Blessing v. Freestone, 520 U.S. 329, 340–341 (1997) (internal quotations marks and citations omitted); Gonzaga, 536 U.S. at 283, 284 n.3 (narrowing the first factor of the Blessing test from Congressional “intent that the provision in question benefit the plaintiff” to unambiguous Congressional intent to create an “individual entitlement” by the use of “rights-creating language”). Every one of our sister circuits has held that the Medicaid Act’s free-choice-ofprovider requirement unambiguously vests in Medicaid beneficiaries a private right of action under 42 U.S.C. § 1983. See, for example, Planned Parenthood of Gulf Coast, Inc. v. Gee, 862 F.3d 445, 458 (5th Cir. 2017); Betlach, 727 F.3d at 967; Planned Parenthood of Ind., Inc. v. Comm’r of Ind. St. Dep’t Health, 669 F.3d 962, 968 (7th Cir. 2012); Harris v. Olszewski, 442 F.3d 456, 459, 461–462 (6th Cir. 2006). For the reasons provided below, we concur. a section 23(a)’s statutory language evidences an unambiguous intent to confer an enforceable right. The first factor of the Gonzaga/Blessing test requires us to evaluate whether the Medicaid Act’s freechoice-of-provider provision reflects Congress’ unambiguous intent to extend a federal enforcement right to Medicaid-eligible patients. Pursuant to Section 23(A), a state Medicaid plan: “must . . . provide that . . . any individual eligible

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for medical assistance . . . may obtain such assistance from any institution . . . qualified to perform the service or services required . . . who undertakes to provide [] such services.” 42 U.S.C. § 1396a(a)(23)(A). Notably, the Medicaid Act applies heightened freedom-of-choice protection to Medicaid-eligible family planning services. 42 U.S.C. § 1396a(a)(23)(B); (4)(C). The Medicaid statute, therefore, “adds an additional more specific layer of protection for patients seeking family planning services.” Betlach, 727 F.3d at 964. As this statutory language illustrates, Congress explicitly drafted Section 23(A) “in terms of the person benefitted” using “individually focused terminology.” Gonzaga, 536 U.S. at 284, 287 (quoting Cannon v. Univ. of Chicago, 441 U.S. 677, 692 n.13 [1979]). Congress’ employment of the phrase “any individual eligible for medical assistance” demonstrates its intent to establish an individual right for an identifiable class: Medicaid beneficiaries. See O’Bannon, 447 U.S. at 785; Gee, 862 F.3d at 459; Betlach, 727 F.3d at 966–967; Planned Parenthood of Ind., 699 F.3d at 974; Harris, 442 F.3d at 461–462. The Supreme Court has held that Section 23(A) “confers an absolute right to be free from government interference with the choice to [receive covered services from a provider] that continues to be qualified.” O’Bannon, 447 U.S. at 785. Section 23(A) also contains “rights-creating” “mandatory language.” Westside Mothers v. Haveman, 289 F.3d 852, 863 (6th Cir. 2002). The freechoice-of-provider provision asserts that “[a] State plan . . . must provide” freedom-of-provider choice to Medicaid enrollees. 42 U.S.C. § 1396a(a)(23) (A) (emphasis added). It further specifies that states “shall not restrict the choice of the qualified person from whom the individual may receive,” id. § 1396a(a)(23)(A) & (B) (emphasis added), “family planning services and supplies . . . .” Id. § 1396d(a)(4)(C). Section 23(A), therefore, is easy to distinguish from the statutory language that the Supreme Court found inadequate to confer an enforceable individual right in Gonzaga and Armstrong. Gonzaga, 536 U.S. at 287–288; Armstrong v. Exceptional Child Ctr., Inc., 135 S. Ct. 1378, 1385 (2015). Neither the Family Educational Rights and Privacy Act of 1974 (FERPA) nondisclosure provision at issue in Gonzaga nor the Medicaid rate-setting provision under review in Armstrong contain “individually focused terminology” or “rights-creating language.” 20 U.S.C. § 1232g (2013); 42 U.S.C. § 1396a(a)(30)(A). Instead, and unlike here, the controlling statutory language in Gonzaga and Armstrong does little more than define system-wide benchmarks and is directed exclusively at federal or state administrators, with no reference to any identifiable class of individuals. 20 U.S.C. § 1232g; 42 U.S.C. § 1396a(a)(30)(A). Section 23(A) suffers no such shortcomings. Similar to Title VI of the Civil Rights Act of 1964 and Title IX of the Education Amendments of 1972, both

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of which confer private enforcement rights, the free-choice-of-provider provision is phrased “with an unmistakable focus on the benefited class.” Cannon, 441 U.S. at 691 (emphasis added). Accordingly, Section 23(A)’s explicit and mandatory rights-creating language satisfies the first prong of the Blessing/Gonzaga test. b section 23(a)’s free choice of provider is a specific right that courts can easily administer. Section 23(A) likewise meets the second prong of Blessing/Gonzaga. The free-choice-of-provider provision grants Medicaid enrollees a relatively narrow and specific right that courts have ample competence to administer. Whether a provider is “willing” and “qualified” is not “so vague and amorphous that its enforcement would strain judicial competence.” Blessing, 520 U.S. at 340–341. Enforcing such a right only requires courts to determine whether a Medicaid-eligible individual was denied the choice of a willing and qualified provider. As several courts have recognized, answers to these “factual yes-or-no questions” are likely to be “readily apparent” and do not demand “any balancing of competing concerns.” Betlach, 727 F.3d at 967 (quoting Harris, 442 F.3d at 462). Adjudicating whether a health care provider is qualified to provide Medicaid-eligible services is not a particularly complex task nor one that raises the kind of vagueness concerns that would counsel against judicial enforcement. Planned Parenthood of Ind., 699 F.3d at 974 (ruling that Section 23(A) “is administrable and falls comfortably within the judiciary’s core interpretive competence”); Harris, 442 F.3d at 462 (concluding that Section 23(A) “does not contain the kind of vagueness that would push the limits of judicial enforcement”); 42 U.S.C. § 1396a(p)(1) (allowing a state to exclude a provider from Medicaid “for any reason for which the Secretary could exclude the individual or entity from participation”). For example here, the Arkansas Medical Practices Acts and Regulations define qualifications to provide health care services. See A.C.A. §§ 17-80-101 et seq. ADHS has not alleged that PPH fails to meet these qualifications. If it had, a court could easily apply the facts to the statutory and regulatory qualification requirements. In this regard, Section 23(A) differs markedly from Section 30(A) of the Medicaid Act, the rate-setting provision at issue in Armstrong, 135 S. Ct. at 1385. As the Court explained, “[i]t is difficult to imagine a requirement broader and less specific than [Section] 30(A)’s mandate that state plans provide for payments that are consistent with efficiency, economy, and quality of care, all the while safeguard[ing] against unnecessary utilization of . . . care and services.” Id. (quoting 42 U.S.C. § 1396a(a)(30)(A) [internal quotations omitted]). As the Armstrong Court held, the “sheer complexity” of Section 30(A) enforcement

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paired with the need for uniform ratemaking suggested that Congress did not intend Section 30(A) to confer a private right of action. Id. (majority opinion); see also id. at 1388 (Breyer, J., concurring) (emphasizing the “nonjudicial nature” of ratemaking and contending that “[t]he history of ratemaking demonstrates that administrative agencies are far better suited to this task than judges”). Private enforcement of Medicaid’s free-choice-of-provider provision does not implicate any of the administrability concerns articulated in Armstrong. Reaching a determination whether a health care provider is qualified to provide Medicaid-covered services is both straightforward and well within the competence of the courts. See, for example, Ball v. Rodgers, 492 F.3d 1094, 1115 (9th Cir. 2007). It is a particularly uncomplicated task where, as here, the state has made no effort to disqualify the provider from serving its non-Medicaid population and appears to have based its decision to terminate the provider from its Medicaid program on a value-laden pretext divorced from quality-related concerns. Moreover, because the qualification of one Medicaid provider has no impact on the qualification of other providers, freedom-of-choice enforcement neither risks the creation of competing claims nor demands the level of uniformity called for in the rate-setting context. For these reasons, we conclude that Section 23(A) confers on Medicaid beneficiaries a sufficiently defined individual right capable of judicial enforcement. c section 23(a) imposes a binding obligation on the states. Section 23 (A) also fulfills the third prong of the Blessing/Gonzaga test because it creates a requirement for participating states. Blessing, 520 U.S. at 341. The free-choice-ofprovider provision is “couched in mandatory, rather than precatory terms.” Id. at 341; See also Ball, 492 F.3d at 1116. It expressly stipulates that “[a] State plan . . . must provide” freedom-of-provider choice to Medicaid enrollees. 42 U.S.C. § 1396a(a)(23)(A) (emphasis added). The Medicaid Act equally emphatically provides that states “shall not restrict the choice of the qualified person from whom the individual may receive” “family planning services and supplies . . . .” 42 U.S.C. § 1396a(a)(23)(A) & (B); id. § 1396d(a)(4)(C) (emphasis added). This language unequivocally requires states to permit Medicaid-eligible individuals to choose any qualified provider that willingly participates in the Medicaid program, without government interference. O’Bannon, 447 U.S. at 785. Here, the unjustified interference of Arkansas’ Governor and ADHS in the patient-provider relationship between class members and PPH unfairly deprives Medicaid beneficiaries of choice and jeopardizes their health. This sort of pretextual termination, designed to vilify and punish PPH for its

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association with Planned Parenthood and/or for its “values,” sacrifices traditionally marginalized individuals and perpetuates decades of health inequity. The Medicaid Act does not tolerate such a result. In light of the language of Section 23(A), and the purposes of the Medicaid Act, we join our sister circuits in holding that Congress has unambiguously extended to Medicaid beneficiaries an individual right under Section 23(A) of the Medicaid Act.

2 Plaintiffs Can Enforce Section 23(A) Pursuant to 42 U.S.C. § 1983 Once a plaintiff establishes that a statute confers an individual right under Blessing/Gonzaga, “the right is presumptively enforceable by § 1983.” Gonzaga, 536 U.S. at 284; see also Maine v. Thiboutot, 448 U.S. 1, 4 (1980). The state may only rebut this presumption if it shows that “Congress specifically foreclosed a remedy under § 1983.” Gonzaga, 536 U.S. at 284 n.4 (internal quotation marks omitted). There are two paths by which Congress can foreclose Section 1983 enforcement notwithstanding the statutory establishment of an individual right. First, Congress can “shut the door to private enforcement . . . expressly, through specific evidence of the statute itself.” Id. The Medicaid Act does not contain any such express exclusionary language. 42 U.S.C. §§ 1396a et seq. ADHS appears to concede as much. See, for example, Br. for Appellant at 20–21, Does v. Gillespie, 867 F.3d 1034 (8th Cir. 2017) (No. 15-3271). Congress can also foreclose a private right “by creating a comprehensive enforcement scheme that is incompatible with individual enforcement under § 1983.” Blessing, 520 U.S. at 341. However, establishing that a § 1983 action is impliedly foreclosed constitutes a “difficult showing.” Id. at 346. ADHS argues that the Medicaid Act’s general administrative scheme evidences that Congress impliedly foreclosed Section 1983 enforcement of the free-choiceof-provider provision. We disagree. The Medicaid Act’s rudimentary enforcement scheme authorizes HHS to withhold a state’s federal Medicaid funding if the state is not in “substantial compliance” with requirements of the statute. 42 U.S.C. §§ 1316(a), 1396c. However, the Supreme Court has repeatedly “stressed that a plaintiff’s ability to invoke § 1983 cannot be defeated simply by the availability of administrative mechanisms to protect the plaintiff’s interests.” Blessing, 520 U.S. at 347 (quoting Golden St. Transit Corp. v. City of Los Angeles, 493 U.S. 103, 106) (internal quotation marks omitted). The Medicaid Act’s circumscribed regulatory enforcement scheme is neither “comprehensive” nor inconsistent with private enforcement. Blessing, 520 U.S. at 341.

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The Supreme Court has defined a “comprehensive” regulatory scheme as one that is “carefully tailored” and comprised of “unusually elaborate enforcement provisions.” Id. at 347; Middlesex Cnty. Sewerage Auth. v. Nat’l Sea Clammers Ass’n, 453 U.S. 1, 13 (1981). For example, in holding that the Federal Water Pollution Control Act (FWPCA) contained a “comprehensive” administrative scheme in Sea Clammers, the Court emphasized the statute’s panoply of enforcement remedies, which include express citizen-suit provisions, noncompliance orders, civil penalties, and criminal penalties. Id. at 1314. In Smith v. Robinson, the Court similarly held that the Education of the Handicapped Act precluded Section 1983 enforcement because it included a “comprehensive scheme” with “an elaborate procedural mechanism” to protect the rights of children with disabilities followed by a “right to [private] judicial review” for aggrieved individuals. 468 U.S. 992, 1009–1012 (1984). Quite unlike the robust regulatory regimes at issue in Sea Clammers and Robinson, the Medicaid Act’s administrative enforcement scheme provides no private remedy for a Medicaid-eligible individual whose Section 23(A) rights have been violated by a state Medicaid agency. As the Supreme Court recognized in Blessing, the ability of HHS to cut federal funding is not enough when the administrative remedy available provides no private remedy for an aggrieved individual to bring a claim through federal administrative proceedings. Blessing, 520 U.S. at 348; see also Wright v. Roanoke Redevelopment & Hous. Auth., 479 U.S. 418, 428 (1987) (rejecting the argument that an agency’s “generalized powers” to cut off state federal funding amounted to a demonstration of Congressional intent to prevent private enforcement under Section 1983). The same result follows here. It is uncontested that, in more than a half a century since the enactment of the Medicaid Act, HHS has never deployed the singularly blunt enforcement tool conferred on it by the statute’s general administrative scheme and for good reason. Defunding a state’s Medicaid program, the exclusive health care safety net provider to one in five Americans, to enforce compliance with Section 23(A) would have a devastating effect on the health of the vulnerable populations served by such programs. While the Medicaid Act authorizes HHS to withhold funding from state programs that fail to “substantially comply” with federal Medicaid requirements, the crudeness of this remedial structure and its potentially devastating downstream harms must be acknowledged. In fact, the Supreme Court recently ruminated on the Medicaid Act’s enforcement regime in the context of the Affordable Care Act’s Medicaid expansion mandate and, in so doing, characterized the federal government’s statutory right to withhold state Medicaid funds as “a gun to the head” remedy.

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Nat’l Fed’n. of Indep. Bus. v. Sebelius, 576 U.S. 519, 581 (2012). This is because defunding a state Medicaid plan risks that the non-compliant state’s Medicaiddependent individuals will be denied critical and potentially lifesaving health care services. As a group of former HHS officials explained: [A Medicaid Act] compliance action is an effective mechanism only in theory . . . . In practice, a state’s noncompliance creates a damned-if-youdo, damned-if-you-don’t scenario where the withholding of state funds will lead to depriving the poor of medical assistance . . . . The “stick” of withholding funds that accompanies a compliance action ultimately does not punish the state, but the very people the Medicaid Act is meant to benefit.

Br. for Former HHS Officials as Amici Curiae Supporting Resp’t at 18–19, Armstrong v. Exceptional Child Ctr., Inc., 135 S. Ct. 1378 (2015) (No. 14-15). “Consequently, compliance proceedings are a drastic remedy that HHS rarely pursues. Instead, HHS has historically relied on private enforcement as a central means of ensuring compliance with various Medicaid provisions.” Id. at 2. The important health care delivery concerns that strongly disincentivize from defunding a state Medicaid’s program reinforce the importance of recognizing Section 23(A)’s provision of a private right of action to Medicaid enrollees. As the former HHS officials submitted and history makes clear, private enforcement of the free-choice-of-provider provision is the only viable vehicle to hold states accountable for Section 23(A) violations. Courts also must be cognizant that, while the interests of HHS and Medicaid-eligible individuals may overlap in certain circumstances, they are virtually always distinct. HHS shoulders the enormous burden of administering the complex and resource-intensive Medicaid system across fifty-six disparate jurisdictions. HHS has neither the time nor the resources to police individual rights violations. Id. at 6 (explaining that the federal government “lacks the logistical and financial resources necessary to be the exclusive [Medicaid Act] enforcer”). HHS focuses its limited assets on the promotion of cost-savings and efficiency. Id. Given these regulatory priorities, “charging HHS with the sole responsibility of ensuring quality of care and availability of access – factors that increase the program’s costs – makes no sense as a matter of practice or policy.” Id. HHS, therefore, has “not only . . . historically understood and accepted that the Medicaid Act is privately enforceable, it has come to rely on that fact.” Id. Perhaps well aware of HHS’s statutory and resource-related enforcement constraints, ADHS contends instead that an Arkansas Medicaid provider’s

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right to a state administrative appeal to challenge program termination precludes an individual Medicaid enrollee’s right to private enforcement of Section 23(A). Br. for Appellant at 11, Does v. Gillespie, 867 F.3d 1034 (8th Cir. 2017) (No. 15-3271). We emphatically disagree. First, it is not clear that providers have standing to enforce Section 23(A) in administrative proceedings under Section 23(A)’s plain language. Gee, 862 F.3d at 460 (acknowledging that Section 23(A) “speaks only in terms of recipient’s rights rather than provider’s rights”). Second, even with regard to its own claims, PPH’s administrative remedies may be limited. ADHS has taken the position that it may unilaterally terminate a presumably qualified Medicaid provider without cause and for no reason because of the language of its provider agreements. Br. for Appellant at 6–9, 16–17, 23, Does v. Gillespie, 867 F.3d 1034 (8th Cir. 2017) (No. 15-3271). If ADHS is correct, it would be difficult for PPH to successfully challenge its not-for-cause termination on any basis other than a procedural or constitutional claim. Third, even assuming, arguendo, that PPH could effectively challenge ADHS’s termination decision in a state administrative proceeding, there is insufficient alignment between PPH’s interest in participating in Arkansas Medicaid and Medicaid beneficiaries’ right to choose any qualified provider. Simply stated, neither the limited and historically unenforceable Medicaid Act general administrative scheme nor the Arkansas administrative proceeding rights that attend exclusively to Medicaid providers constitute the sort of “comprehensive” scheme that either protects Medicaid beneficiaries’ freechoice-of-provider rights or precludes individual judicial enforcement of Section 23(A). Accordingly, we hold that Medicaid beneficiaries may enforce their Section 23(A) rights pursuant to 42 U.S.C. § 1983. B The Class Is Entitled to Injunctive Relief Enjoining ADHS from Suspending Payment to PPH for Covered Services Provided to Medicaid Beneficiaries Having determined that the class has standing to bring a Section 1983 claim to enforce its rights pursuant to Section 23(A), we turn now to consideration of the district court’s grant of preliminary injunction. In determining whether to grant injunctive relief, a district court should consider: (1) whether the movant is likely to suffer irreparable harm without the injunction, (2) whether the movant is likely to succeed on the merits, (3) the balance of the equities and hardships between the movant and other parties in granting the injunction, and (4) the public interest. Dataphase Sys. Inc. v. CL Sys., 640 F.2d 109, 114 (8th Cir. 1981); Winter v. Nat. Res. Def. Council, Inc., 555 U.S. 7, 20 (2008).

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1 Arkansas Medicaid Patients Are Likely to Suffer Irreparable Harm If PPH Is Terminated from the State Medicaid Program Consistent with every circuit court that has considered the issue, the district court correctly found that being denied free-choice-of-provider is likely to cause irreparable harm. Gee, 862 F.3d at 471–472; Planned Parenthood of Ind., 699 F.3d. at 912. Eliminating PPH from the Medicaid program will disrupt the provider-patient relationship for hundreds of Arkansas Medicaid beneficiaries who have selected PPH as their preferred provider and reduce beneficiary access to health care. It will unjustifiably deprive beneficiaries of their choice of provider, decrease the number of Medicaid providers available, and eliminate a unique provider who offers nonjudgmental, gender-sensitive care along with a broader range of services, specialized family planning, greater convenience, and fewer barriers to care. While there are many ways to articulate the destruction likely to follow from ADHS’s value-based elimination of PPH, we organize our discussion around harms to availability, accessibility, acceptability, and quality of care. U.N., Econ. & Soc. Council, General Comment No. 14: The Right to the Highest Attainable Standard of Health, U.N. Doc. E/C.12/2000/4 (2000) (describing same as “interrelated and essential elements” of the right to health). In doing so, we intentionally highlight connections between the Medicaid Act and a human right to health. Across the globe, governments, policy makers, and courts have recognized that realization of the right to health, especially among traditional marginalized populations, requires not only that enough services are available but also that such services are accessible, acceptable, and of quality. While the United States has been slow to embrace this principle, we read the free-choice-of-provider provision to reflect such wisdom. a pph’s termination is likely to impair the availability of medicaid health care services to the class. Turning first to availability, AHDS’s termination of PPH unnecessarily jeopardizes the quantity of providers available to Arkansas Medicaid beneficiaries. At least in part due to less generous reimbursement rates, Medicaid has long-suffered lower provider participation rates compared with private health plans and Medicare. See, for example, Peter J. Cunningham & Ann S. O’Malley, Do Reimbursement Rates Discourage Medicaid Participation by Physicians?, 28 Health Affs. 17, 17 (2009). Because qualified and willing Medicaid providers are already in short supply and PPH provides services to many Arkansas Medicaid enrollees,

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PPH’s termination threatens to result in an insufficient number of service providers to meet the needs of the state’s Medicaid population. Id. As a result, the class is likely to experience difficulty finding alternative, comparable health care providers and could be forced to forego critical medical care if PPH’s provider agreements are terminated. Even if not forced to forego care, Medicaid beneficiaries are likely to experience prolonged wait times without PPH as an option. Arkansas’ “own documents reflect that long wait times and [scheduling] delays . . . are commonplace among county health clinics that offer family planning services and other preventive care.” Long wait times can endanger health, especially when family planning and reproductive health care needs are at issue. Delayed family planning appointments exacerbate unintended pregnancies, substantially increasing both shortterm and long-term risks of harm to women and babies. Adam Thomas & Emily Monea, The High Cost of Unintended Pregnancy, 45 CCF Br. 2–3 (2011) (unintended pregnancy correlates with a higher likelihood of domestic violence, mental health issues, and lower educational and income attainment). Similarly, delays in prenatal care increase the risk of maternal mortality and pregnancy complications, and longer wait times for STI testing and treatment can increase the rate and severity of STIs. See generally Institute of Medicine Comm. On Improving Birth Outcomes, Reducing Maternal Mortality and Morbidity, Improving Birth Outcomes: Meeting the Challenge of the Developing World (2003); Ctrs. for Disease Control & Prevention Fact Sheet, Incidence, Prevalence, and Cost of Sexually Transmitted Infections in the United States (2013) (demonstrating that STIs that remain untreated for an extended period of time are more likely to result in more severe and chronic negative health consequences for women and their children). Longer wait times for care can also lead to delayed cancer diagnoses – delays that can cause beneficiaries to suffer more aggressive, expensive, and invasive treatment or, worse, render the beneficiary’s cancer untreatable. For all of these reasons, unnecessarily eliminating PPH and, thereby, subjecting Medicaid beneficiaries to longer waits for care, is likely to have a materially adverse impact on beneficiary health outcomes and exacerbate already troubling healthy disparities. b pph’s termination is likely to exacerbate the class’ accessibility challenges. PPH’s termination from Arkansas Medicaid is also likely to compound health care accessibility barriers for Medicaid recipients. Arkansas Medicaid recipients already face significant choice limitations as a result of status-centric health inequities and social determinants. Practical realities often make it difficult to utilize health care that requires

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multiple trips, is not accessible via public transportation, or operates only when the beneficiary is unavailable due to childcare related obligations, work schedules, or other constraints. As the district court recognized, ADHS’s termination of PPH, a patient-centered provider, is likely to magnify the vacuum of viable treatment services accessible to Medicaid enrollees. PPH offers important and unique conveniences that assist Medicaid beneficiaries in realizing their family planning and health goals. Unlike many other Medicaid providers, PPH has routine walk-in and same day appointments, which are critical options for enrollees with inflexible schedules, childcare demands, or transportation challenges. Br. for Appellant, Planned Parenthood Ark. & Eastern Okla. v. Selig, 313 F.R.D 81 (2016) (No. 4:15–cv–00566-KGB) 2016 WL 703411, at *7. PPH also provides family planning services without the barriers imposed by other Medicaid providers. For example, PPH offers birth control services without requiring a referral and allows patients to obtain hormonal contraceptives without requiring a Pap smear or pelvic exam. PPH also provides one-stop contraceptive shopping, enabling cis-women and transmen to both obtain and fill a prescription in a single location. Given the challenges of everyday life for many low-income and otherwise stigmatized individuals, these unique provider attributes are essential for effective access to care. Removing PPH as a Medicaid provider is likely to cause the class irreparable harm by decreasing the accessibility of care. c pph’s termination is likely to undermine the acceptability of care to the class. Even if it were possible for availability and accessibility challenges to be overcome with “alternate” providers, ADHS’s termination of PPH is likely to cause irreparable harm because of its impact on the acceptability of care. Congress conferred an “absolute right” to free-choice-of-provider on Medicaid beneficiaries because it recognized the importance of allowing patients to choose the provider who they believe best meets their needs and conforms to their values. O’Bannon, 447 U.S. at 785. Patients who have experienced discrimination or choice condemnation often delay critical care services and, sometimes, opt out of the health care system entirely. Bruce Link & Mark L. Hatzenbuehler, Stigma as an Unrecognized Determinant of Population Health: Research and Policy Implication, 41 J. Health Pol., Pol’y & L. 653 (2016). This is especially true for patients who identify as LGBTQ+, seek STI or contraceptive counseling or services, or have had an abortion. Stigma and Discrimination, CDC [https:// perma.cc/HLS4-GN55]. Medicaid recipients with stigmatized conditions, choices, or identities often fear being forced to request services and counseling from a new and unknown provider, who may not deliver services to them in a

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respectful and affirming manner. Disrupting established provider-patient relationships entails new vulnerabilities, loss of privacy, loss of trust, and emotional costs that will almost certainly exacerbate preexisting disparate health outcomes of Arkansas’ Medicaid enrollees. See Baptist Health v. Murphy, 226 S.W.3d 800, 813 (Ark. 2006) (disruption of doctor-patient relationship can constitute irreparable harm). Even for new patients, the inability to choose a willing and qualified provider rises to the level of irreparable harm. Here, class members have selected PPH as their preferred provider because they perceive PPH to offer unique benefits. Some seek PPH’s specialized family planning expertise. Jennifer Frost, Rachel Benson Gold & Amelia Bucek, Specialized Family Planning Clinics in the United States: Why Women Choose Them and Their Role in Meeting Women’s Health Care Needs, 22 Women’s Health Issues e519, e524 (2012) (finding six in ten women who access contraceptive care from a specialized family planning provider chose the provider based on this expertise). In addition to convenience, others reference PPH’s treatment atmosphere. PPH offers nonjudgmental, culturally and gender-sensitive care that caters to the needs of a diverse population. For a multitude of reasons, Medicaid beneficiaries trust PPH to deliver accurate information and quality care without judgment based on sexual orientation, gender identity, socioeconomic background, or lifestyle choices. Id. ADHS’s termination would rob them of that choice. Depriving the class of its choice of provider is likely to result in irreparable harm by rendering available care less acceptable. d pph’s termination is likely to decrease quality of care for the class. In addition to imposing new availability, accessibility, and acceptability hurdles, PPH’s termination from Arkansas Medicaid raises significant quality concerns for the state’s Medicaid recipients. PPH provides safe and effective care that is evidence-based and adheres to national and state practice guidelines. Docket No. 3, at 8, de Baca Decl. } 13. The record reflects that PPH offers the most effective forms of birth control, intrauterine devices and hormonal implants. Br. for Appellant, Does v. Gillespe, 867 F.3d 1034 (No. 15-3271, No. 16-4068) 2016 WL 703411, at *4-5. Moreover, ADHS concedes that it is unlikely that Medicaid enrollees can obtain the same range of quality services from any other individual Medicaid provider in the state. Docket No. 39, at 31–33. In sum and for the reasons provided above, PPH’s termination from Arkansas Medicaid is highly likely to impair the availability, accessibility, acceptability, and quality of health care extended to Arkansas beneficiaries. As a result, the class has met its burden of demonstrating that it will suffer irreparable harm in the absence of a preliminary injunction.

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2 The Class Is Likely to Succeed on the Merits a the class has established a strong section 1983 claim based on violation of section 23(a) of the medicaid act. We also hold that the class has demonstrated a likelihood of success on the merits. Arkansas’ value-based termination of PPH’s provider agreements almost certainly violates Medicaid’s free-choice-of-provider provision. Section 23(A) obligates states to offer beneficiaries a choice of any “qualified” provider willing to render Medicaid-covered services. 42 U.S.C. § 1396a(a)(23)(A). As every other circuit court confronting this issue has concluded, “the term ‘qualified’ as used in § 1396a(a)(23) unambiguously refers to the provider’s fitness to render the medical services required.” Planned Parenthood of Ind., 699 F.3d at 978; Betlach, 727 F.3d at 969. Without question, PPH is “qualified” under such criteria. PPH remains qualified under Arkansas law to render all the services at issue to nonMedicaid-eligible individuals and is willing to provide Medicaid beneficiaries the same. Docket No. 45, } 45; Docket No. 127, }} 4–5; see also ACA §§ 17-80101 et seq. Yet, ADHS refuses to reimburse PPH for Medicaid-beneficiarycovered services because of PPH’s “values” and/or its association with distinct entities. Docket No. 127, } 2; Docket No. 45, }} 28, 29, and 39. Because PPH is willing and medically qualified, ADHS’s refusal violates beneficiaries’ freechoice-of-provider rights. Planned Parenthood of Ind., 699 F.3d at 962. ADHS argues that it has unfettered authority to disqualify a Medicaid provider and, once it does so, Medicaid beneficiaries are precluded from raising Section 23(A) challenges because their free-choice-of-provider rights extend only to providers ADHS deems Medicaid-“qualified.” Docket No. 16, Aff. 1. We disagree. As our sister courts have held, “the free-choice-of-provider requirement would be self-eviscerating” if read as ADHS suggests. Betlach, 727 F.3d at 970; see also Planned Parenthood of Ind., 699 F.3d at 978. While states enjoy some latitude in setting provider qualification standards, Medicaid’s specifically enumerated participation requirements, like the freechoice-of-provider provision, limit state flexibility. As judges, we must enforce such limits faithfully to ensure that state flexibility does not swallow state accountability for federally defined program requirements. The free-choice-of-provider provision mandates that state qualification standards reasonably relate to the provider’s fitness to perform covered medical services in a professionally competent manner. Ctrs. for Medicare & Medicaid Servs., State Medicaid Director Letter, No. 16-005 (Apr. 19, 2016); 42 C.F.R. § 431.51(c)(2) & 1396a(p)(1). States have no authority to terminate provider

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contracts for reasons unrelated to provider competency. Id. Congress included the free-choice-of-provider provision to give Medicaid beneficiaries the same freedom to choose between providers that non-Medicaid-insured Americans enjoy. Ctrs. for Medicare and Medicaid Servs., CMS Manuals Pub. No. 45 The State Medicaid Manual, § 2100. In so doing, Congress sought to empower beneficiaries and ensure that political fights did not impede access to health care. Because there is no dispute that PPH is willing and medically qualified to provide Medicaid-covered services, the class has demonstrated that it is likely to succeed on its claim that ADHS violated Section 23(A). b pph’s unconstitutional conditions claim is also likely to succeed. PPH is also likely to succeed on its unconstitutional conditions claim. While we ordinarily do not consider issues not raised on appeal, we retain discretion to do so where injustice might otherwise result or the argument is purely legal. Gap, Inc. v. GK Dev., Inc., 843 F.3d 744, 748–749 (8th Cir. 2016); U.S. Dep’t of Lab. v. Rapid Robert’s Inc., 130 F.3d 345, 348 (8th Cir. 1997). Given the significance of the constitutional rights at stake here and the importance of protecting low-income Arkansans’ health, we exercise our discretion to offer guidance. The unconstitutional conditions doctrine prohibits state and federal governments from conditioning receipt of a government contract or other benefit on the relinquishment of a constitutional right outside the scope of the government program. Agency for Int’l Dev. v. All. for Open Soc’y Int’l., Inc., 570 U.S. 205, 214–215 (2013). The doctrine prevents governments from utilizing benefits conferment to “manipulate[] constitutional rights out of existence.” Frost v. R.R. Comm’n, 271 U.S. 583, 594 (1926) (internal quotation marks omitted). In order for the doctrine to apply, the imposed condition must be one the government could not directly institute under the Constitution. Koontz v. St. Johns River Water Mgmt. Dist., 570 U.S. 595, 612 (2013). The doctrine reflects a compromise. It allows the government to impose conditions on the use of its funds but prohibits the government from imposing a funding condition that seeks “to leverage funding to regulate [the exercise of constitutional rights] outside the contours of the program itself.” Agency for Int’l Dev., 570 U.S. at 214–215 (emphasis added); FCC v. League of Women Voters of Cal., 468 U.S. 364, 399–400 (1984). Where a condition provides no way for a potential contractor to both limit its use of government funds and proceed to use private funds to engage in constitutionally protected activity outside the government program, the condition likely runs afoul of the Constitution. Id. Here, ADHS’s termination of PPH from Arkansas Medicaid due to PPH’s “values” or “affiliation” with distinct entities, rather than on PPH’s use of

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program funds, appears to violate PPH’s First Amendment rights. The First Amendment prohibits the government from compelling an entity to endorse the state’s beliefs or speech. Turner Broadcasting Sys., Inc. v. FCC, 512 U.S. 622, 641 (1994); Rumsfeld v. Forum for Aca. & Inst. Rights, Inc., 547 U.S. 47, 61 (2006). It also bars a state from requiring an entity to refrain from associating with other entities to satisfy the state’s preferences. NAACP v. Ala. ex rel. Patterson, 357 U.S. 449, 460–461 (1958); see also Agency for Int’l Dev., 570 U.S. at 218–219. Arkansas, therefore, cannot directly order PPH to abandon its abortion-related values or its association with Planned Parenthood without violating the First Amendment. The question then becomes whether Arkansas can do so indirectly through its Medicaid provider agreements. That is to say, can Arkansas condition PPH’s participation in its Medicaid program on PPH’s adoption of the state’s values and associations? Under existing precedent, the answer is clearly no. This Court and the Fifth Circuit have previously held that a state condition prohibiting association with an independent Planned Parenthood affiliate runs afoul of the unconstitutional conditions doctrine. Planned Parenthood of Mid-Missouri & Eastern Kansas v. Dempsey, 167 F.3d 458 (8th Cir. 1999) (holding that a statute must be interpreted to allow grantee to affiliate freely with independent entities to avoid imposing an unconstitutional condition); Planned Parenthood Ass’n. of Hidalgo Cnty Tex., Inc. v. Suehs, 692 F.3d 343, 351 (5th Cir. 2012) (holding that “[t]he regulations’ restriction on affiliation is problematic because it is not a direct regulation of the content of a government program”); see also Rust v. Sullivan, 500 U.S. 173, 197 (1991). Likewise, the Supreme Court has found a funding condition requiring certain values or beliefs unconstitutional. Agency for Int’l Dev., 570 U.S. at 218. Accordingly, so long as PPH complies with ADHS’ use restrictions, ADHS is prohibited from terminating PPH’s Medicaid provider agreement due to PPH’s values or associations “outside the scope of the [government] funded program.” Rust, 500 U.S. at 197; see also Dempsey, 167 F.3d at 462–464; Suehs, 692 F.3d at 351; Agency for Int’l Dev., 570 U.S. at 218; League of Women Voters, 468 U.S. at 399–400. ADHS’s value and affiliations conditions go well beyond ensuring that Arkansas Medicaid funds are used for their intended purpose. They are not reasonably necessary to ensure the effective provision of quality medical care. In fact, they appear entirely unrelated to the same. Moreover, ADHS has provided no mechanism by which PPH can both limit its use of government funds to their intended purpose and utilize private funds to exercise the organization’s constitutionally protected rights outside the scope of the government program. Rust, 500 U.S. at 197; see also Dempsey, 167 F.3d at

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462–464; Suehs, 692 F.3d at 351; Agency for Int’l Dev., 570 U.S. at 218; League of Women Voters, 468 U.S. at 399–400. This case is easily distinguishable from the government funding condition upheld in Rust v. Sullivan. There, the Supreme Court ruled constitutional a funding regulation, which required that abortion advocacy be “physically and financially separate” from Title X projects, because the condition applied to the project but not to the grantee itself. Rust, 500 U.S. at 197–198. The Rust Court reasoned that the grantee remained free to engage in abortion advocacy outside the scope of the government program and, thereby, distinguished the government’s program condition from a government grantee condition. Id. at 196–197. In sharp contrast to Rust, ADHS’ funding conditions apply to the grantee and not to the Medicaid program. Unlike permissible conditions, value and affiliation conditions compel grantees to adopt the state’s views outside the scope of the government program. Id. at 197; Agency for Int’l Dev., 570 U.S. at 218. These conditions leave no room for PPH to retain pro-choice beliefs and to associate with Planned Parenthood outside the program while continuing to receive Arkansas Medicaid funding. This is precisely the sort of government-coerced relinquishment of constitutional rights that the unconstitutional conditions doctrine prohibits. Accordingly, PPH is likely to succeed on the merits of its claim that ADHS’ funding conditions violate PPH’s First Amendment rights under the unconstitutional conditions doctrine.

3 The Balance of Equities and Public Interest Weigh in Favor of the Class We also agree with the district court’s conclusion that the balance of equities and public interest weigh in favor of the class. We discussed the significant availability, accessibility, acceptability, and quality of health care harms that the class is highly likely to suffer should AHDS terminate PPH from Arkansan Medicaid in detail above. As the named Plaintiffs contended in the district court, the state, by contrast, “will suffer no harm at all.” Rather, Arkansas will continue to reimburse [PPH] for providing Medicaid services as it has for years . . . and patients will continue “to receive high-quality reproductive health care.” Br. for Appellant, Planned Parenthood Ark. & Eastern Okla. v. Selig 313 F.R.D 81 (2016) (No. 4:15–cv–00566-KGB) 2015 WL 13710046, at *15. Because we find that: [A]ny suspension of Medicaid payments would result in threatened irreparable harm to the [class] and because the quality of [PPH’s] care rendered to

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Arkansas patients does not appear to be questioned by ADHS or other officials . . . , the resulting harm to the [class], who are [PPH’s] patients, is greater than the potential harm to ADHS’ pursuit of its stated public policy objectives.

Id. We, therefore, hold that the risk of irreparable harm to the class and the public interest outweighs any potential harm that would inure to ADHS.

iii conclusion For the reasons provided above, we affirm the district court’s holding that the Medicaid Act’s free-choice-of-provider provision vests in the Medicaid beneficiary class a private right of action enforceable under Section 1983 and its order precluding ADHS from suspending payments to PPH for covered services provided to Arkansas Medicaid enrollees. We further recognize that PPH is likely to succeed on its First Amendment claims under the unconstitutional conditions doctrine.

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15 Commentary on National Institute of Family and Life Advocates v. Becerra brietta r. clark

introduction Imagine reading a book review that hardly mentions the central character and ignores a critical struggle driving the story arc. This is what it feels like reading Justice Thomas’ majority opinion in National Institute of Family and Life Advocates v. Becerra1 (NIFLA). NIFLA deals with a free speech challenge to state disclosure requirements designed to facilitate women’s access to a full range of pregnancy-related services, including abortion. Although the legal question was whether the First Amendment bars government-compelled disclosures imposed on limited-scope pregnancy centers – or crisis pregnancy centers as they are more commonly known – women’s reproductive health and autonomy interests were at the heart of this dispute. NIFLA was closely watched because of its implications for government speech as a tool of reproductive regulation. Yet the original opinion virtually erased women’s interests from the analysis, making NIFLA ripe for a reconceptualization of the constitutional question from a feminist perspective. In her feminist rewrite, Professor Sonia Suter, writing as Justice Suter, exposes and engages the significant health and reproductive autonomy interests at stake. By doing so, she not only provides a more coherent and principled test for free speech challenges to government regulation of health providers, but she advances reproductive justice and gender equity more broadly.

background Women’s bodies, especially their reproductive capacity, have long been co-opted for political and social ends. While some of the most extreme 1

138 S. Ct. 2361 (2018).

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examples of this are no longer viewed as legally or morally acceptable, women’s bodies continue to be treated as legitimate sites of social and legal contests for procreative control. Much attention has been paid to the proliferation of legal constraints on women’s reproductive choices through heightened regulatory and information disclosure requirements targeting abortion providers (i.e., TRAP laws)2 and increasingly restrictive abortion bans designed to force a revisiting of the fundamental right to abortion announced in Roe v. Wade.3 But an arguably more subtle attempt to control women’s decision-making has been underway since before Roe, and it has been gaining steam since the early 2000s.4 Crisis Pregnancy Centers (CPCs) are facilities that may or may not be licensed by the state and may be staffed by licensed and unlicensed individuals. Although they often project the image of a typical women’s health center, they provide only a limited scope of pregnancy-related care and counseling, with the goal of discouraging abortion.5 CPCs have been around for decades, but they have expanded significantly since the 1990s. Their growth coincided with a shift in the anti-abortion movement’s strategy. Rather than explicitly championing fetal life over women’s health and attacking women for choosing abortion, CPCs helped to usher in a different strategy, adopting a more caring tone focused on concern for women’s health and employing therapeutic rhetoric designed to convince women that abortion is harmful to them, physically and psychologically.6 Some CPCs connect poor women who want to choose childbirth with social and emotional support that may enable women to make this choice and try to counter troubling cultural messages that poor women are undeserving of or unfit for motherhood7 – both salutary actions on the part of CPCs that can advance reproductive justice.8 Unfortunately, investigations reveal that many 2

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5 6

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Targeted Regulation of Abortion Providers, Guttmacher Inst., [https://perma.cc/QQW5– 6REH] (last updated June 1, 2019). Jenny Jarvie, Conservative States Enact Abortion Bans in Hope of Overturning Roe v. Wade, L.A. Times (May 11, 2019), [https://perma.cc/7ZLK-8TRP]. See Aziza Ahmed, Informed Decision Making and Abortion: Crisis Pregnancy Centers, Informed Consent, and the First Amendment, 43 J. L. Med. & Ethics 51, 51 (2015). Id.; see also About NIFLA, NIFLA [https://perma.cc/9GDP-4U6J] (last visited June 22, 2019). See Reva B. Siegel, The New Politics of Abortion: An Equality Analysis of Woman-Protective Abortion Restrictions, 2007 U. Ill. L. Rev. 991, 1014–1023, 1022 n.131 (2007). See Michelle Oberman, The Women the Abortion War Leaves Out, N.Y. Times (Jan. 11, 2018), [https://perma.cc/P66C-EJ3B]. See Loretta J. Ross & Rickie Solinger, Reproductive Justice: An Introduction 9 (2017) (“[R]eproductive justice . . . has three primary principles: (1) the right not to have a child; (2) the right to have a child; and (3) the right to parent children in safe and healthy environments.”).

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CPCs employ techniques that undermine women’s reproductive freedom and health. They project misleading images of themselves as comprehensive reproductive health care providers in order to lure in women who are in crisis because of an unintended pregnancy and want an abortion, for the sole purpose of changing their minds.9 They give wrong or misleading information about abortion risks to make women fearful, and they use language such as “unborn children,” along with other fetal information, to try to elicit an emotional rejection of abortion.10 Such practices disregard patients’ needs for balanced and accurate information about the risks of pregnancy and abortion and they prioritize providers’ anti-abortion goals over medical need and women’s own judgment about which option will promote their wellbeing. Not only is this unethical, because it creates a coercive environment that constrains reproductive choice, but it can have serious health consequences if it causes women to delay care until it becomes more dangerous or difficult to get. This exacerbates harm experienced by women already vulnerable to informational and access barriers due to poverty, education level, age, geographic and social isolation, lack of regular provider, health status, and discrimination – the very women targeted by CPCs.11 Targeting the health care encounter to constrain or direct women’s reproductive choices stands in stark contrast to the way health care regulation can empower women with the medical, financial, and informational tools to choose a path consistent with their own needs and values. We see this reflected in California’s overall current approach to reproductive regulation.12 California prohibits discrimination based on reproductive choice, preventing exclusions of reproductive health care from public and private insurance. Licensing reforms have increased the supply of professionals providing reproductive health care, expanding access for those experiencing barriers due to poverty and geography. California leads the nation in reforming obstetric practice to improve the care and health outcomes for pregnancy and childbirth. And it goes further than most states in connecting poor pregnant women with vital financial and social resources to support childbirth and parenting, as well as to promote overall health and well-being.

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10 11 12

See About NIFLA, supra note 5 (admitting to targeting “abortion-vulnerable” or “abortionminded” women and using ultrasound to discourage abortion); see also Unmasking Fake Clinics, NARAL Pro-Choice California (Apr. 2, 2015), [https://perma.cc/Z5DR-2M4M]. See About NIFLA, supra note 5; Unmasking Fake Clinics, supra note 9. See Unmasking Fake Clinics, supra note 9. Admittedly, California has room for improvement. See, e.g., Priscilla A. Ocen, Incapacitating Motherhood, 51 U.C. Davis L. Rev. 2191 (2018) (identifying reproductive injustices committed against incarcerated pregnant women, including in California).

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Despite this comprehensive approach to ensuring reproductive health and choice, concerns persisted about whether pregnant women were timely informed about where and how they could get care, including women seeking care at CPCs.13 This led California to enact the California Reproductive Freedom, Accountability, Comprehensive Care, and Transparency (FACT) Act,14 which contained two resource disclosure requirements. The Licensed Facility Disclosure (LFD) applied to licensed facilities providing pregnancy-related care and required them to post information about state programs providing “immediate free or low-cost access to comprehensive family planning services . . . prenatal care, and abortion.”15 It exempted facilities participating in these state programs, presumably because of the direct link patients already had to subsidized services by virtue of their relationship with the facility.16 The Unlicensed Facility Disclosure applied to unlicensed facilities providing certain pregnancy-related services without a licensed medical provider on site, requiring disclosure that they were not licensed as medical facilities.17 In NIFLA, two CPCs (one licensed and one unlicensed) and NIFLA (an organization representing over 1,400 CPCs nationwide) challenged the FACT Act.18 These petitioners argued that the law was an unconstitutional infringement on their freedom of speech under the First Amendment.19 After the district court and Ninth Circuit denied the petitioners’ request for a preliminary injunction, they appealed to the US Supreme Court, which granted certiorari.20 The stakes in NIFLA were significant and centered primarily on the LFD. Most immediately, the outcome would shape pregnant women’s health care encounters in California and states with similar laws: Upholding the Act would enhance women’s ability to make informed reproductive health decisions, potentially in conflict with CPCs’ anti-abortion goals. But there were potentially more far-reaching implications for speech as a tool of reproductive regulation. This was because the challenge to California’s disclosure 13

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Hrg on Reproductive FACT Act AB-775 before the Assemb. Comm. on Health, 3–4, 2015–2016 Leg. Sess. (Cal. 2015). Cal. Health & Safety Code § 123470–123473; see also Hearing on Reproductive FACT Act AB775 before the Assemb. Comm. on Judiciary, 4, 2015–2016 Leg. Sess. (Cal. 2015) (noting the need for “women [to be] fully informed of the rights and services available to them”). Cal. Health & Safety Code § 123472(a)(1). Id. § 123471(c). Id. § 123472(b)(1). NIFLA v. Becerra, 138 S. Ct. 2361, 2370 (2018). Id. Id.

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provisions targeting providers of pregnancy services seemed to implicate the Supreme Court’s holding in an earlier free speech challenge to disclosure requirements targeting abortion providers, Planned Parenthood of Southeastern Pennsylvania v. Casey.21 In Casey, the Court upheld several disclosures mandated by the Pennsylvania Abortion Control Act.22 Although characterized by several members of the Court as furthering informed consent, the law included disclosures unrelated to the risks and benefits of the abortion procedure, such as nonmedical information about child support and adoption services intended to discourage abortion.23 Despite this ideological motivation, Casey has been interpreted as establishing a deferential standard for anti-abortion disclosures, a standard many believed applied more generally to disclosure requirements in health care.24 Casey has also been credited with seeding the proliferation of increasingly extreme anti-abortion disclosure laws.25 These laws are testing the limits of Casey’s deference, but lower courts are struggling because Casey’s plurality opinion devoted a mere two sentences to the free speech analysis and never articulated a clear standard for review.26 A simmering demand for clarification of Casey, and the parallels between NIFLA and Casey, resulted in Casey becoming a focal point for those making predictions about NIFLA or seeking to shape its outcome.27 Many viewed Casey’s legacy as linked to the LFD’s fate: On the one hand, Casey would seem to require upholding the disclosure; on the other, applying a higher level of scrutiny to strike down the LFD could render vulnerable Casey’s apparently deferential approach and the proliferation of anti-abortion laws it spawned. This possibility led some to conclude that either outcome could be considered a “win” for abortion rights.28 It also likely shaped CPCs’ strategy to try to distinguish Casey while arguing for heightened review of the LFD. CPCs claimed strict scrutiny should apply to California’s law requiring resource

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505 U.S. 833 (1992). Id. at 882–885. Id. at 935–936 (Blackmun, J., concurring in part and dissenting in part). See Ahmed, supra note 4, at 54–55. Id. See Sonia M. Suter, The First Amendment and Physician Speech in Reproductive Decision Making, 43 J. L. Med. & Ethics 22, 22–25 (2015). See, e.g., Scott W. Gaylord, A Matter of Context: Casey and the Constitutionality of Compelled Physician Speech, 43 J. L. Med. & Ethics 35, 45–47 (2015); B. Jessie Hill, Casey Meets the Crisis Pregnancy Centers, 43(1) J.L. Med. & Ethics 59. See, e.g., Mark Joseph Stern, A Pro-Life Puzzler, Slate (Mar. 20, 2018), [https://perma.cc/F23EX5WM] (“[I]f [the Court] uses NIFLA to announce broad new First Amendment protections for all clinics – including abortion providers – it will be a net benefit for choice.”).

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information supporting all reproductive options, while preserving deferential review for anti-abortion disclosures.29 This approach – allowing compelled disclosures discouraging women’s reproductive choice, but invalidating speech empowering women’s reproductive decision-making – was ultimately embraced by a majority of the Court.

original opinion In June 2018, a divided US Supreme Court held that both FACT Act disclosures likely violated the First Amendment and thus reversed the Ninth Circuit’s decision affirming the district court’s denial of the plaintiff’s motion for a preliminary injunction.30 Most of the opinion focused on the required disclosure for licensed facilities (the LFD). Writing for the majority, Justice Thomas declined to address the petitioners’ claims that the FACT Act targeted them based on their “pro-life” views.31 Instead, he focused on the petitioners’ claims that the required disclosures were content-based laws that unconstitutionally infringed on their speech. From the outset, Thomas established a tone that was skeptical of government regulation of speech and of California’s law in particular. After a recitation of the facts that gave short shrift to the interests underlying the challenged law, Thomas began his overview of First Amendment jurisprudence, characterizing the vast realm of content-based disclosure laws as “presumptively unconstitutional” and subject to strict scrutiny.32 Eventually, he identified two exceptions where content-based laws would receive only intermediate scrutiny, but concluded that neither applied in this case.33 The first exception involved laws regulating commercial advertising that require disclosure of factual, noncontroversial information about the terms of service.34 Although the LFD mandated accurate and objective information about where women could get subsidized pregnancy-related care and applied only to facilities offering pregnancy-related care, Thomas held that the LFD could not satisfy this test because of its inclusion of abortion. He viewed abortion as inherently controversial and “in no way relat[ing] to the services” CPCs provide,35 ignoring both the objectivity of the information disclosed and 29 30 31 32 33 34 35

See Br. for Pet’rs at 46–50, NIFLA v. Becerra, 138 S. Ct. 2361 (2018). NIFLA, 138 S. Ct at 2378. Id. at 2370–2371 n2. Id. at 2368, 2371. Id. at 2372. Id. Id.

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the function of abortion as pregnancy-related medical care. It is not clear from the opinion if he was unaware of or simply indifferent to the paradoxical result that his approach would render constitutionally suspect disclosure laws informing women how to access a safe, highly regulated, and constitutionally protected procedure. Thomas defined the second exception as involving regulations of professional conduct that incidentally burden speech, including informed consent disclosures.36 He pointed to the anti-abortion disclosures upheld in Casey as an example of when a more deferential standard should apply, but then attempted to distinguish Casey in holding that the LFD did not satisfy this exception. He concluded the LFD was “not an informed-consent requirement or any other regulation of professional conduct,” in part because it was “not tied to a medical procedure” and “provide[d] no information about the risks or benefits of those procedures.”37 This conclusion was confounding for a few reasons. First, both NIFLA and Casey involved challenges to resource disclosures that did not provide medical risk/benefit information. Indeed, Casey upheld disclosures with even less connection to a medical procedure – child support and adoption information38 – than the LFD, which provided resource information to help women access pregnancy-related medical care. Second, Thomas’ narrow focus on whether the LFD was tied to a particular medical procedure ignored the fact that CPCs target poor women seeking pregnancy-related care, and that the LFD provided essential information to help them access timely medical care and make an informed reproductive choice. Finally, Thomas’ reasoning was inconsistent with long-standing deference to disclosure laws promoting patients’ health and safety broadly.39 Although holding that the LFD should be subject to strict scrutiny, Thomas concluded it could not even survive intermediate scrutiny. He first employed a familiar technique of seeming to account for the strength of women’s health interests advanced by the LFD by assuming away any need to discuss them.40 Thomas then concluded the law would fail anyway, based on his view of the LFD as “wildly underinclusive” and the communication alternatives available to state officials.41 Thomas’s inability to grasp the strong nexus between the 36 37 38

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Id. at 2373. Id. Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833, 881–884 (1992) (rejecting a “narrow” definition of “informed choice”). NIFLA, 138 S. Ct at 2386–2897 (Breyer, J., dissenting). Id. at 2375. Id. at 2375–2376.

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LFD and women’s health is unsurprising given his failure to acknowledge the barriers confronting poor pregnant women or the interests at stake when such women rely on CPCs in seeking abortion care. Thomas’ neglect of the health and reproductive autonomy interests also shaped his conclusion that the unlicensed facility disclosure could not satisfy any level of scrutiny. In finding that this disclosure requirement could not even satisfy rational basis review, he emphasized the state’s failure to show actual harm caused by unlicensed facilities.42 Once again, in striking down a disclosure intended to protect women’s reproductive health choices, Thomas was willing to ignore the long-standing practice of allowing similar statusbased disclosures in other areas of health to reduce consumer confusion and potential harm.43 As a result of Thomas’ jurisprudential contortions and utter disregard of women’s interests, the original opinion produced an illogical result: It invalidated an ideologically neutral information law designed to protect women’s access to the full scope of reproductive health care, while taking the opportunity to solidify a First Amendment exception for ideological laws forcing providers to deliver anti-abortion messaging.

feminist judgment One need not embrace a feminist perspective to find troubling Thomas’ neglect of women’s reproductive health throughout the opinion or his uneven treatment of speech related to reproduction. Indeed, Justice Breyer touched upon both in his dissent. Nonetheless, it takes a feminist-inspired rewrite of the majority opinion by Justice Suter to explain what more is at stake in this case. She renders visible that which is invisible in the majority opinion, and even largely obscured in the dissent: the “significant implications for women’s ability to exercise their constitutionally protected reproductive rights and participate as equal members of society.” Suter reveals not only how the free speech challenge in NIFLA implicates reproductive autonomy interests that should be considered if we care about gender equality and reproductive justice, but she demonstrates that such interests must be considered if we are to be faithful to fundamental principles of free speech used to balance competing interests in health care relationships. Suter does this by employing two classic methodologies of feminist legal reasoning: “(1) identifying and challenging those elements of existing legal doctrine that leave out or disadvantage women and members of other excluded groups (asking the ‘woman 42 43

Id. at 2377. Id. at 2389–2390 (Breyer, J., dissenting).

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question’) [and] (2) reasoning from an ideal in which legal resolutions are pragmatic responses to concrete dilemmas rather than static choices between opposing, often mismatched perspectives.”44 The latter, also referred to as feminist practical reasoning, “reason[s] from context [that] allows a greater respect for difference and for the perspectives of the powerless.”45 Unlike the original opinion, which effectively ignored women’s interests, Suter centers women in her opinion. At the outset, Suter describes the conflict by presenting a vivid picture of the women in crisis seeking pregnancy-related care, explaining the relationship between their reproductive health needs, CPC practices, and the FACT Act disclosures. She accounts for the overlapping systems of oppression that contribute to women’s hidden subordination, such as informational and structural barriers that make these women unlikely to know how to access care and particularly vulnerable to health problems if care is delayed. Suter’s rewritten opinion provides a stark contrast to the original majority opinion and dissent, which framed the conflict primarily as a clash of views between two powerful entities: the “pro-choice” state and “pro-life” CPCs. For example, in his opening framing of the conflict, Thomas used selective quotes from the FACT Act’s author highlighting CPCs’ anti-abortion views, referring to this as the “perceived problem” the Act was intended to address.46 Not until the end of his description does Thomas mention the stated purpose of the Act – to ensure women are aware of services available to them in making reproductive decisions – and he never connected this to CPC practices or the informational barriers women faced. Context also plays a crucial role in Suter’s more nuanced approach to defining the proper level of scrutiny. She articulates a tiered standard of review for content-based laws based on both the “nature of the compelled speech” and “its role in serving the medical needs of patients.” At one end of the spectrum, strict scrutiny applies where law impacts public dialogue or is based on viewpoint or ideology; at the other end, where law regulates conduct and only incidentally burdens speech, rational basis applies. Between these two extremes lies speech “integral to the professional relationship and delivery of medical services,” such as informed consent disclosures, which gets intermediate scrutiny. She explains that this level of scrutiny reflects the reality that “factually accurate and medically relevant disclosures . . . help patients make informed medical decisions consistent with their values and circumstances” and “‘affect the[ir] wellbeing.’” 44 45 46

Katharine T. Bartlett, Feminist Legal Methods, 103 Harv. L. Rev. 829, 831 (1990). Id. at 849. NIFLA, 138 S. Ct. at 2368.

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Suter employs context in a more explicitly feminist way in the application of this standard to the FACT Act. Rather than allowing women’s interests to be obscured by an abstract reference to the state’s “informational interest,”47 as it was in the original opinion, Suter reveals the full scope of women’s interests at stake. Using an anti-subordination feminist lens, Suter demonstrates how the LFD could satisfy even the highest scrutiny: It serves a compelling interest because it provides factually accurate, nonmisleading, and non-ideological information that helps women overcome informational and structural barriers to reproductive health care, and it is narrowly tailored to achieve these ends because it tries to reach women vulnerable to the harmful effects of these barriers at the point where it is still possible to help them get timely, comprehensive care. Like the original opinion, the rewrite does not spend as much time on the unlicensed facility disclosure requirement. But, consistent with Suter’s contextualized approach throughout, her centering of women’s health and autonomy interests yields a richer analysis of this requirement that demonstrates persuasively why it survives any level of scrutiny.

implications Reproductive Justice The most obvious implication of Suter’s reimagined majority opinion is that it preserves states’ broad regulatory power in the service of reproductive justice. Reproductive justice demands “a positive right to government action in creating conditions of social justice and human flourishing,”48 such as actively working to eliminate the informational and other structural barriers women face. The original opinion limits states’ power to address this injustice by undermining their ability to prevent reproductive health harms before they occur. By contrast, Suter’s opinion would preserve this power, subject to important First Amendment principles. States could reduce impediments to reproductive health care by focusing supportive interventions at the moment and site where they could make the most difference. Ideological Speech Suter rejects CPCs’ characterization of the FACT Act as ideological speech or viewpoint discrimination yet takes the opportunity to clarify how courts should 47 48

Id. at 2377. Zakiya Luna & Kristin Luker, Reproductive Justice, 9 Ann. Rev. L & Soc. Sci. 327, 328 (2013).

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deal with such speech. She insists that had the LFD described abortion as preferable to childbirth, this would be ideological speech subject to strict scrutiny and likely unconstitutional. Because this is in direct tension with Casey’s holding that government can force providers to promote childbirth over abortion in communications with patients, Suter’s opinion strikes at the heart of Casey’s anti-abortion speech legacy. From a feminist perspective, compelled speech to persuade a woman to make a particular reproductive choice is troubling, because it co-opts a woman’s relationship with her physician and her decision-making process as a site for public control over her reproduction. Although judicial restraint prevents Suter from formally overturning the part of Casey that allows states to express preference for childbirth through compelled speech, she plants seeds the Court could use to revisit this in the future. Suter makes clear that disclosures designed to discourage abortion violate principles of informed consent that animate First Amendment balancing when health care speech is involved. Suter’s opinion provides much needed clarification on the limits of the government’s power to shape healthcare conversations between providers and patients – an issue that has been vexing lower courts since Casey.49 Suter insists that compelled speech couched in terms of “informed consent” – that is, speech justified as helping women make informed decisions – be scrutinized according to whether it actually furthers or undermines informed consent principles. Such principles demand that patients receive accurate, medically relevant, and balanced information that helps them make decisions consistent with their values and circumstances. This would empower lower courts to invalidate the kind of misleading and emotionally coercive anti-abortion disclosures that have survived under Casey, because Suter makes clear that reproductive decision-making should not be an exception to these principles.

Abortion Exceptionalism “Abortion exceptionalism” is the practice of imposing special or heightened regulatory burdens on women’s decision-making and access to care when abortion is involved, burdens that cannot be justified on medical or ethical grounds.50 Suter shows how the Court’s treatment of such laws when 49 50

See Suter, supra note 26, at 22. See, e.g., Ian Vandewalker, Abortion and Informed Consent: How Biased Counseling Laws Mandate Violations of Medical Ethics, 19 Mich. J. Gender & L. 1, 6–8 (2012). Skeptics of abortion rights use the term to call out what they consider unjustified privileging of abortion.

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challenged can further exceptionalize abortion in troubling ways, such as Casey’s apparently deferential approach to compelled ideological speech that discourages abortion. She also identifies this problem in CPCs’ demand for more favorable treatment of anti-abortion disclosures than ideologically neutral reproductive speech. Justice Breyer seems to share Justice Suter’s concern when, in his dissent from the original opinion, he criticizes Thomas’ treatment of speech as uneven because it provides greater protection for compelled speech promoting alternatives to abortion than for government laws requiring women to receive information that include alternatives to pregnancy.51 But while Breyer’s criticism focuses on the conservative majority’s apparent favoritism toward states with “pro-life” as opposed to “pro-choice” views, Suter suggests that another type of discrimination is at work. Heightened regulatory burdens on abortion, including anti-abortion disclosures, are typically characterized as “woman-protective” measures; yet similar impediments are not placed on procedures that pose much greater risk to women, such as childbirth, or on procedures of comparable or greater risk to men.52 This leads Suter to ponder whether, if medical risk cannot justify this intervention, it must be the belief that women “need extra assistance” in deciding whether to pursue abortion. By naming this paternalism, Suter forces us to confront the gender-bias typically invisible in courts’ review of purportedly “objective” informed consent laws targeting women seeking abortion. Although courts and legislatures tend not to articulate the gender-based assumptions motivating their exceptional treatment of abortion, scholars have presented compelling evidence that sex-stereotyping shapes these decisions. Examinations of the social and legal context of anti-abortion laws characterized as “woman-protective” reveal that such laws are rooted in assumptions about women’s essential nature as maternal: Because abortion is contrary to women’s nature, abortion inevitably causes serious emotional harm to women, and women seeking abortion are either being coerced or are in need of help to fully comprehend the significance of terminating a life.53 Such assumptions reflect precisely the kind of sex-stereotyping long understood to violate equal protection law in other contexts; yet the Supreme Court has refused to acknowledge the connection between reproductive health

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NIFLA, 138 S. Ct at 2385, 2388 (Breyer, J., dissenting). See id. at 2386. See, e.g., Siegel, supra note 6, at 1009–1014; Kristin Luker, Abortion and the Politics of Motherhood (1984).

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regulation and sex discrimination.54 By shining a light on the gender equity implications of abortion, Suter’s rewrite would pave the way for the Court to treat laws regulating reproductive health as sex-based classifications that deserve closer scrutiny under equal protection principles. Free Speech Suter’s feminist rewrite is undeniably valuable for its illumination of the reproductive autonomy and gender equity interests ignored in the original opinions. But Suter’s approach is also notable for producing a more coherent and principled test for free speech generally. In addition to applying a level of scrutiny more consistent with Casey and other health-related precedent, Suter’s framing of the issue as one that must attend to informed consent, reproductive autonomy, and gender equity interests better accounts for the dynamic character of free speech and its bi-directional relationship with other constitutional interests. This approach is not uniquely feminist nor specific to reproductive rights.55 It does, however, illustrate the benefits feminist legal method can yield beyond issues traditionally understood as feminist. Indeed, in comparing Suter’s rewrite to the original, one cannot help but wonder whether Thomas’ anti-feminist approach and desire to achieve a particular result were what led him to unnecessarily complicate the First Amendment analysis, sowing confusion for future regulation of health speech.

NATIONAL INSTITUTE OF FAMILY AND LIFE A D V O C A T E S V. BECERRA, 138 S. CT. 2361 (2018)

justice sonia suter delivered the opinion of the court This case asks the Court to consider the constitutionality of California’s Reproductive Freedom, Accountability, Comprehensive Care, and Transparency FACT) Act, Cal. Health & Safety Code Ann. § 123470– 123473, which requires specific notices for clinics that primarily provide services for pregnant women. Under the statute, licensed clinics are required 54

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See Reva Siegel, Reasoning from the Body: A Historical Perspective on Abortion Regulation and Questions of Equal Protection, 44 Stan. L. Rev. 261 (1992) (noting the jurisprudential impediments to analyzing abortion restrictions through an equal protection framework). See, e.g., Timothy Zick, The Dynamic Relationship between Freedom of Expression and Equality, 12 Duke J. Const. L. & Pub. Pol’y 13 (2016) (examining this bidirectional relationship with a focus on race and LGBT equality).

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to notify women about the availability of California programs that provide “free or low-cost access to comprehensive family planning services . . . prenatal care, and abortion.” § 123472(a)(1). Unlicensed clinics must provide notices stating they are “not licensed as a medical facility.” § 123472(b)(1). The Petitioners ask us to consider whether these notice requirements violate the First Amendment. We conclude that they likely do not, and therefore we should not require the district court to issue a preliminary injunction forbidding enforcement of the statute. At the outset, we emphasize that the issues at stake in this case implicate more than the First Amendment. Because the statute regulates speech related to pregnancy, a condition that uniquely affects women, we recognize that our decision has significant implications for women’s ability to exercise their constitutionally protected reproductive rights and to participate as equal members of society. We are of course cognizant of the fact that advances in medicine allow some transgender men to become pregnant, and therefore pregnancy no longer affects only women. See June Obedin-Maliver & Harvey J. Makadon, Transgender Men and Pregnancy, 9 Obstetric Med. 5 (2016). Until recently, however, only women could become pregnant and, even today, the vast majority of individuals who are pregnant are women. For that reason, our focus throughout this opinion is on women. We also note that how we rule in this case has implications for the consistency of First Amendment jurisprudence regarding reproduction-related disclosure requirements. In Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833 (1992), we held that an informed consent requirement for abortion did not violate the First Amendment. We must therefore consider today whether there is something special about abortion as opposed to other reproductive decisions. In short, we must decide whether to be evenhanded in our rulings with respect to compelled speech in the context of reproduction.

i A In 2015, the California legislature enacted the FACT Act to supplement existing legislation concerning maternal health and further its priorities by ensuring that women receive “comprehensive perinatal care,” including preand postnatal care. Cal. Health & Safety Code Ann. § 123475. Specifically, the statute addresses pregnant women’s informational needs with regard to all of their medical options in pregnancy. As various medical organizations have noted, “a crucial aspect of women’s health care” is comprehensive

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prenatal care for pregnant women, Br. for the Am. Acad. of Pediatrics, Cal. et al. as Amici Curiae Supporting Resp’ts at 8, and access to “accurate and unbiased information about [their] medical options.” Am. Coll. of Obstetricians & Gynecologists (ACOG), Committee Opinion No. 439: Informed Consent, 114 Obstetrics & Gynecology 401, 407 (2009). Moreover, timely and adequate prenatal care is necessary to reduce risks to maternal and fetal health. Br. for the Am. Acad. of Pediatrics, Cal. et al. as Amici Curiae Supporting Resp’ts at 8–25. Certain groups of women are at higher risk of receiving delayed prenatal care – women whose pregnancies are unintended, Cheng et al., Unintended Pregnancy and Associated Maternal Preconception, Prenatal and Postpartum Behaviors, 79 Contraception 194, 196 (2009), and poor women, Nothnagle et al., Risk Factors for Late or No Prenatal Care Following Medicaid Expansions in California, 4 Maternal & Child Health J. 251, 254 (2000). Indeed, half of pregnancies in California are unintended. Appendix to Petition for Writ of Certiorari 76a. Other factors, such as low socioeconomic status, immigrant status, low levels of education, lack of insurance, minority status, unemployment, and lack of existing reproductive care, can contribute to such delays. In addition, while they are declining, unintended pregnancies make up nearly half of all pregnancies and disproportionately affect lower socioeconomic groups, including poor women, women of color, women with low levels of education, Lawrence B. Finer & Mia R. Zolner, Declines in Unintended Pregnancy in the United States, 2008–2011, 374 N. Eng. J. Med. 843 (2016), and women facing barriers to family planning services, Guttmacher Inst., State Facts about Unintended Pregnancy: California (2017). To fulfill the needs of women at risk for delayed prenatal care, California provides free or low-cost family planning services, including contraception services and education, preconception counseling, prenatal care and delivery, and abortion services. As the California legislature found, “[m]illions of California women are in need of [such] publicly funded” services. J.A. to Pet. for Writ of Cert. 76a. Unfortunately, in spite of California’s active efforts to publicize the availability of these programs, many women remain unaware of them. Br. for St. Resp’ts at 5–6. Timing, however, is of the essence with prenatal care because delayed prenatal care can threaten a woman’s health due to pregnancy-related risks, conditions aggravated by pregnancy, or delayed abortions. Br. for the Am. Acad. of Pediatrics, Cal. et al. as Amici Curiae Supporting Resp’ts at 9–11. It can also pose risks to the fetus through complications associated with maternal sexually transmitted infections and delayed detection of treatable conditions. Id. at 8. As a result, it is crucial for pregnant, and especially

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low-income, women to learn about such publicly funded family planning programs as early as possible. Regrettably, the very circumstances associated with poverty may make it even harder for poor women to discover the availability of these public health services. These informational barriers can be exacerbated when clinics that provide only limited prenatal services or that have no licensed medical providers “actively seek out” pregnant women, especially those with unintended pregnancies. Id. at 6. While some pregnancy centers help women obtain publicly funded health care, others “use deception to lure pregnant women who may be seeking abortions.” Maura Dolan, California’s Anti-Abortion Pregnancy Centers Want the Supreme Court to Overturn State Notice Law, L.A. Times (Mar. 18, 2018). Some falsely advertise that they provide an array of prenatal care, including abortions, Hayley Tsukayama, Google Removes “Deceptive” Pregnancy Center Ads, Wash. Post (Apr. 28, 2014), when they provide “almost no medical services” and refuse to provide referrals to providers who will offer “unbiased counseling, contraceptives, and abortions.” Br. for Equal Rights Advocates et al., as Amici Curiae Supporting Resp’ts at 5–6. Others “provide false or misleading information.” H. Comm. On Gov’t Reform – Minority Staff, 109th Cong., False and Misleading Health Information Provided by Federally Funded Pregnancy Resource Centers 7 (2006) (finding such misstatements in 87% of surveyed clinics), including inaccurate claims that abortion is linked to breast cancer and mental illness, Dolan, supra. All of these factors can prevent or delay some pregnant women from receiving access to comprehensive prenatal care and accurate information about the full range of their medical options, with potentially negative health consequences. See Br. for St. Resp’ts at 8. To try to overcome some of the barriers to pregnant women’s timely access to comprehensive reproductive care, California enacted the Reproductive FACT Act, which imposes two disclosure requirements: the Licensed Facility Disclosure and the Unlicensed Facility Disclosure. B The Licensed Facility Disclosure was intended to supplement California’s “efforts to advise women of its reproductive health programs.” App. to Pet. for Writ of Cert. 77a. The legislature concluded that “[t]he most effective way to ensure that women quickly obtain the information and services they need” is to have licensed medical facilities that focus on pregnancy and family planning notify women about the existence of public, full-service programs and how to access information about eligibility. Id.

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The statute defines a “licensed covered facility” as a licensed clinic whose “primary purpose” is to “provide family planning or pregnancy-related services” and that provides certain related services such as prenatal care, contraceptive care or counseling, pregnancy diagnosis, or abortion services. Cal. Health & Safety Code Ann. § 123471(a). Licensed covered facilities must provide patients with a two-sentence notice stating that: California has public programs that provide immediate free or low-cost access to comprehensive family planning services (including all FDA-approved, methods of contraception), prenatal care, and abortion for eligible women. To determine whether you qualify, contact the county social services at [insert the telephone number].

Id. § 123472(a)(1). Clinics may choose to post the notice in one of three ways: (1) as a “digital notice distributed to all clients” during check-in or arrival; (2) as a public sign in the waiting room, at least 8.5 inches by 11 inches, using at least 22-point font; or (3) as a printed notice distributed to all clients in at least 14-point font. Id. § 123472(a)(2). In addition, the notice must be in English and the county’s “primary threshold languages” for Medi-Cal beneficiaries. Id. C The second disclosure provision, the Unlicensed Facility Disclosure, was also motivated by concerns that pregnant women receive information about access to comprehensive pregnancy-related care as soon as possible. This provision aims to ensure that pregnant women are informed whether pregnancy-related services are provided by licensed medical professionals or facilities. App. to Pet. for Writ of Cert. 77a. The statute applies to facilities that (1) are not licensed or that have no licensed health care provider who provides or supervises the clinic’s services and (2) whose “primary purpose is providing pregnancy-related services.” Id. § 123471(b). In addition, covered facilities are those which also meet at least two of the following requirements: (1) [they] offer obstetric ultrasounds or “prenatal care to pregnant women,” (2) “offer[] pregnancy testing or . . . diagnosis,” (3) “advertise[] or solicit[] patrons with offers to provide prenatal sonography, pregnancy tests, or pregnancy option counseling,” or (4) have “staff or volunteers who collect health information from clients.” Id. Clinics that fall within the statute must “disseminate to clients on site and in any print and digital advertising materials” a disclosure that states: “This

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facility is not licensed as a medical facility by the State of California and has no licensed medical provider who provides or directly supervises the provision of services.” Id. § 123472(b). The on-site notice must be in at least 48-point font, measure at least 8.5 by 11 inches. Id. § 123472(b)(2). Like the disclosure for licensed clinics, it must also be in English and in the county’s “primary threshold languages for Medi-Cal beneficiaries.” Id. § 123472(b).

ii The Petitioners are an organization of crisis pregnancy centers, a licensed pregnancy center, and an unlicensed pregnancy center. After Governor Brown signed the FACT Act into law, the Petitioners filed a complaint alleging that the statute violated their First Amendment rights to free speech and free exercise of religion. The District Court denied their motion for a preliminary injunction. Nat’l Inst. of Family Life & Life Advocs. v. Harris, No. 15CV2277 JAH(DHB), 2016 WL 3627327 (S.D. Cal. Feb. 9, 2016). The Ninth Circuit affirmed on the grounds that the Petitioners could not show a likelihood of success on the merits. Nat’l Inst. of Family Life & Life Advocs. v. Harris, 839 F.3d 823, 845 (9th Cir. 2016). It found that the licensed notice survives intermediate scrutiny, id. at 833–842, and that the unlicensed notice would survive any level of scrutiny. Id. at 843–844. We affirm the Ninth Circuit’s holdings with respect to both notice requirements.

iii We begin with our analysis of the Licensed Facility Disclosure (LFD). Petitioners assert that this provision not only compels speech, but it is also content-based and viewpoint discriminatory in its “purpose and actual effect.” Br. for Pet’rs at 18. Accordingly, they argue that the appropriate standard of review is strict scrutiny and that the statute fails to meet that stringent test. While we concede that the disclosure provision compels speech and is content-based, we disagree that it discriminates based on viewpoint. Given that the speech at issue arises in the context of a health care relationship, we conclude that intermediate, rather than strict, scrutiny is appropriate. A The Petitioners assert that any content-based regulation of speech “is subject to strict scrutiny.” Br. for Pet’rs at 28 (citing Reed v. Town of Gilbert, 576

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U.S. 155, 166 [2015]; Sorrell v. IMS Health, Inc., 564 U.S. 552, 565 [2011]). This view, however, oversimplifies our First Amendment jurisprudence. Specifically, our standard of review with respect to content-based regulations has varied. See, for example, Zauderer v. Off. of Disciplinary Couns. of Supreme Ct. of Ohio, 471 U.S. 626, 650–651 (1985) (applying rational basis review to compelled speech); Sorrell, 564 U.S. at 563 (heightened scrutiny for speech restrictions); Wooley v. Maynard, 430 U.S. 705 (1977) (strict scrutiny for compelled speech). Thus, the analysis is not as black and white as Petitioners suggest. The case most on point for the issue before us is Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833 (1992), which examined whether the First Amendment prohibited a Pennsylvania law that compelled disclosures in the context of health care generally and reproductive care specifically. The statute required any physician whose patient seeks abortion care to “inform the woman of the nature of the procedure, the health risks of the abortion and of childbirth, and the ‘probable gestational age of the unborn child.’” It also required “the physician or a qualified nonphysician” to inform the pregnant person “of the availability of printed materials published by the State describing the fetus and providing information about medical assistance for childbirth [and] child support from the father, and a list of agencies which provide adoption and other services as alternatives to abortion.” Id. at 881. While our plurality opinion unequivocally found “no constitutional infirmity” in these disclosure requirements under the First Amendment, id. at 884, our rationale was opaque (and, as we discuss below in Part II B, also flawed). We said nothing about the appropriate standard of review. Instead, we merely stated “[t]o be sure, the physician’s First Amendment rights not to speak are implicated, see Wooley v. Maynard, 430 U.S. 705 (1977), but only as part of the practice of medicine, subject to reasonable licensing and regulation by the state, cf. Whalen v. Roe, 429 U.S. 589, 603 (1977).” Id. at 884. The only First Amendment case we used in our analysis was Wooley, which applied strict scrutiny to invalidate under the First Amendment a criminal prosecution for covering up the logo “Live Free or Die” on New Hampshire license plates. Some lower courts have concluded that the citation to Wooley implied that our plurality opinion in Casey applied strict scrutiny. See Tex. Med. Providers Performing Abortion Servs. v. Lakey, 806 F. Supp. 2d 942, 969–970 (W.D. Tex. 2011) vacated in part by Tex. Med. Providers Performing Abortion Servs. v. Lakey, 667 F.3d 570, 575 (5th Cir. 2012). Others concluded that our analysis in Casey was the “antithesis of strict scrutiny” because we also cited to Whalen to emphasize that the compelled speech was within the state’s power to regulate medicine. See Lakey, 667 F.3d at 575.

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In other words, our one-sentence First Amendment analysis offered little guidance to lower courts in evaluating the constitutionality of mandated disclosures in health care, especially with respect to abortion and reproduction. Instead, it has functioned like a Rorschach test, revealing the various outlooks of the lower courts as they interpret Casey’s standard of review variously. See Stuart v. Camnitz, 774 F.3d 238, 248–249 (4th Cir. 2014) (applying intermediate scrutiny); Lakey, 667 F.3d at 576 (applying a rational basis/ reasonableness test); Planned Parenthood Minn., N.D., S.D. v. Rounds, 530 F.3d 724, 734–735 (8th Cir. 2008) (seeming to apply a rational basis/reasonableness test). It is time to resolve the confusion regarding our sphinxlike statement and to clarify how to evaluate content-based regulations of speech in the context of health care. To discern the appropriate standard of review, we must determine the nature of the regulated speech, Bd. of Trs. of State Univ. of N.Y. v. Fox, 492 U.S. 469, 473 (1989) (noting that the Court assesses this as “the first question”), and the context in which it is regulated. We have applied heightened scrutiny to regulations compelling speech that included ideological messages or that discriminated based on viewpoint. West Va. State Bd. of Educ. v. Barnette, 319 U.S. 624, 631–633 (1943) (seeming to apply strict scrutiny to a law requiring students to pledge allegiance to the flag and to the United States because it effectively compelled them to “declare a belief,” endorse a “slogan,” and “communicate . . . the acceptance of the political ideas” expressed in the allegiance); Wooley, 430 U.S. at 707, 713 (applying strict scrutiny to a law requiring the display of New Hampshire’s state motto “‘Live Free or Die’” because it compelled drivers to display an “ideological message”); Sorrell, 564 U.S. at 563–565 (applying heightened scrutiny to “a content- and speakerbased restriction” that disfavored particular content, i.e. marketing, and a particular speaker, i.e. manufacturers). But our standard of review has been less stringent for content-based regulations concerning “purely factual and uncontroversial information.” Zauderer, 471 U.S. at 651. For example, we applied rational basis review to regulations of commercial speech of lawyers in advertising. Id. at 628 (upholding disclosure requirements for advertisers if “reasonably related to the State’s interest in preventing deception of consumers”); Milavetz, Gallop & Milavetz, P.A. v. United States, 559 U.S. 229, 250–253 (2010) (same). Additionally, we (incorrectly) upheld a law imposing informed consent requirements for abortion, on the grounds that the required disclosures were “truthful and nonmisleading,” without clarifying the standard of review. Casey, 505 U.S. at 882. Thus, we must consider whether state regulation of speech imposes, or discriminates

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based on, a particular viewpoint or ideology, and whether it provides “truthful, nonmisleading” information. Also relevant in evaluating the standard of review is the context in which the speech is regulated. Central to our decision to uphold the compelled speech in Casey was the fact that the disclosure was intended to be part of the informed consent process. Our opinion correctly noted that informed consent requirements are “part of the practice of medicine, subject to reasonable licensing and regulation by the State.” Id. at 884. We erred, however, in finding that some of the disclosures required “as part of obtaining [a woman’s] consent to an abortion [were], for constitutional purposes, no different from a requirement that a doctor give certain specific information about any medical procedure.” Id. As we argue below, the disclosure mandate at issue in Casey exceeded typical informed consent requirements by requiring disclosure of nonmedical information intended to persuade women not to terminate their pregnancies. See infra Section III. Nevertheless, we were right in Casey to ask whether disclosure requirements in the context of health care are consistent with common-law and statutory informed consent requirements. See Sonia M. Suter, The First Amendment and Physician Speech in Reproductive Decision Making, 43 J. L. Med. & Ethics 22, 26, n.67 (2015). Regulating speech in the context of health care, however, is complicated by the fact that an inherent tension exists “between the state’s [clear] authority to regulate health care and the First Amendment interests of doctor and patient in the communications that shape” their relationship. Id. at 25–26; Br. for Planned Parenthood Fed’n of America and Physicians for Reproductive Health as Amici Curiae Supporting Resp’ts at 4–5 (“Professional speech creates a First Amendment dilemma.”) The state’s power to regulate medicine and the informed consent process is not unlimited and must be balanced against health care providers’ First Amendment interests, which are not lost simply because they engage in the practice of medicine. This tension also exists in other contexts associated with regulation of professional speech. See Zauderer, 471 U.S. 626 (1985) (regulating advertising of attorneys); Ohralik v. Ohio State Bar Ass’n, 436 U.S. 447 (1978) (regulating attorneys’ solicitation of clients); Va. State Bd. of Pharmacy v. Va. Citizens Consumer Council, 425 U.S. 748 (1976) (regulating speech of pharmacists). Although much of the regulated speech in these contexts is commercial, the key is that that the regulated speech is integral to the services that the professionals, in this case health care professionals, provide. As the Ninth Circuit observed, speech requirements with respect to health care providers are not all alike. We articulate a standard of review today that

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depends on both the nature of the compelled speech and its role in serving the medical needs of patients. Therefore, the stringency of review of speech regulation of health care professionals will vary with the nature of the speech regulation, see In re Primus, 436 U.S. 412, 432 (1978) (strict scrutiny review of regulation of associational activity to further political and ideological goals and advising individuals of the legal rights); NAACP v. Button, 371 U.S. 415, 438 (1963) (strict scrutiny for regulation of attorneys’ solicitation of business); Zauderer, 471 U.S. at 628 (rational basis review in regulating attorney advertising), and its relationship to the delivery of health care. B Our scrutiny must be greatest when regulations affect a provider’s participation in “public dialogue,” see Harris, 839 F.3d at 839, or advocacy, see McIntyre v. Ohio Elections Comm’n, 514 U.S. 334, 347 (1995) (“handing out leaflets in the advocacy of a politically controversial viewpoint . . . is the essence of First Amendment expression”; “[n]o form of speech is entitled to greater constitutional protection”); see also Schenck v. Pro-Choice Network of Western N.Y., 519 U.S. 357, 377 (“Leafletting and commenting on matters of public concern are classic forms of speech that lie at the heart of the First Amendment.”). Strict scrutiny should apply in those instances because such regulations are based on viewpoint or ideology. For example, laws that require physicians to state that the fetus has personhood status when women seek abortions, see, for example, S.D. Codified Laws § 34-23A-10.1(1)(b)–(c), compel ideological statements, even though legislatures describe them as informed consent provisions. Id. Such regulations require the professional to be the mouthpiece for the political views of the state. Even if they arise in a health care context, they compel speech that is not objective, factual, or medically informative, nor is it material to the decisionmaking of the reasonable patient. See Canterbury v. Spence, 464 F.2d 772, 786–788 (D.C. Cir. 1972) (“The scope of the physician’s communications to the patient . . . must be measured by the [reasonable] patient’s need, and that need is the information material to the decision.”). As a result, such laws demean rather than promote informed consent, and they go beyond the state’s authority to regulate medicine. Moreover, they represent the kind of policing of professional speech that threatens the “uninhibited marketplace of ideas in which truth will ultimately prevail.” FCC v. League of Women Voters of Cal., 468 U.S. 364, 377 (1984). Additionally, they force some physicians to “be an instrument for fostering public adherence to an ideological view [they might] fin[d] unacceptable.” Wooley, 430 U.S. at 715 (1977). As a result, strict scrutiny

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must apply in these instances. But see Rounds, 530 F.3d at 735–736, 738 (8th Cir. 2008) (en banc) (rejecting strict scrutiny for such a statute). C At the opposite end of the continuum is regulation that has an “‘incidental effect on speech.’” Harris, 839 F.3d at 839 (quoting Pickup v. Brown, 740 F.3d 1209, 1229 [9th Cir. 2014]). Such regulation might occur in instances in which the regulated speech is a form of clinical treatment. See Pickup, 740 F.3d at 1229–1231 (applying rational basis review to a law banning a form of therapy because it regulated “therapeutic treatment, not expressive speech”). Given the state’s “significant role . . . in regulating the medical profession,” Gonzales v. Carhart, 550 U.S. 124, 157 (2007), the state’s power to regulate speech in health care is greatest in these instances. As a result, rational basis review should apply in such scenarios. D Speech that is integral to the professional relationship and delivery of medical services, such as speech necessary for true informed consent, lies between these two extremes. It is neither speech associated with advocacy or ideology, nor a form of treatment. Therefore, the standard of review – intermediate scrutiny – appropriately falls between the more stringent strict scrutiny and the more lenient rational basis review. Communication is integral to the delivery of health care, and informed consent is an essential part of this process. Factually accurate and medically relevant disclosures offered as part of informed consent are important to the doctor-patient relationship and help patients make informed medical decisions consistent with their values and circumstances. Health care information can “alleviat[e] physical pain,” Va. State Board of Pharmacy, 425 U.S. at 764, “save lives,” Sorrell, 564 U.S. at 566, and assist women in making medical decisions related to reproduction, which are “intimate and personal choices . . . central to personal dignity and autonomy,” Casey, 505 U.S. at 851. Not only do patients have an interest in “autonomous, informed decision-making in their care,” Swartz, supra, at 123, their informed choices also lead to better health outcomes, see, for example, Yves Longtin et al., Patient Participation: Current Knowledge and Applicability to Patient Safety, 85 Mayo Clin. Proc. 53 (2010). Compelled speech that truly serves the informed consent process, therefore, is the kind of speech “that can truly affect the wellbeing of patients.” Suter, supra, at 29. Not surprisingly, “the informed consent doctrine has become firmly entrenched in

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American tort law.” Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261, 269 (1990). As a result, we have upheld speech regulations in the health care context because of the patient’s or consumer’s interest in such speech. See Casey, 505 U.S. at 833; Va. State Bd. of Pharmacy, 425 U.S. at 750 (1976). One reason for this intermediate standard of review is that medical professionals themselves have particular expertise about the medical issues associated with health care. While we have shown considerable deference with respect to legislative findings when medical opinions differ, Suter, supra, at 29 (citing Gonzales, 550 U.S. at 164), we should be cautious about undue interference with speech associated with medical care or conduct, see id. (citing Pickup, 728 F.3d 1042, amended by 740 F.3d 1208 [2014]). Laws that require physicians to disclose medically inaccurate or imbalanced information, see Rachel B. Gold & Elizabeth Nash, State Abortion Counseling Policies and the Fundamental Principles of Informed Consent, 10 Guttmacher Pol’y Rev. 6, 11–12 (2007) (describing informed consent laws, including those that require factually incorrect or medically unsubstantiated claims regarding risks associated with abortion), interfere with the professional obligations of health care providers to give patients accurate and balanced medical information. These laws would undoubtedly fail intermediate scrutiny analysis because they are both misleading and untruthful and “negatively interfere with the important and sometimes delicate process” of obtaining informed consent. Suter, supra, at 26. In short, they undermine the goals of informed consent. When informed consent requirements are factually accurate and clinically relevant, however, they do not demand the strict scrutiny review that regulations of the health care provider’s political speech or advocacy require. Although the state has “a significant role to play in regulating the medical profession,” Gonzales, 550 U.S. at 157, the compelled speech in such instances is entitled to more protection than regulation of speech that is incidental to health care treatment. Therefore, a rational basis test is not appropriate in this context either. Because informed consent requirements derive from the state’s authority to regulate health care, Dent v. West Virginia, 129 U.S. 114 (1889) (upholding medical licensing), but also implicate the First Amendment interests of health care providers, an intermediate standard of review appropriately addresses the tensions between these two interests. As a result, regulations of speech in this interim category must survive heightened intermediate scrutiny.

iv Our reasoning in Casey was that the speech at issue fell within this interim category of speech as “truthful and nonmisleading information” associated

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with informed consent. 505 U.S. at 882 (plurality opinion). The LFD notice requirement even more clearly fits into that category. Petitioners claim, however, that the LFD requirement imposes viewpoint discrimination for two reasons. First, petitioners argue that the exemptions have the “operational effect” of targeting certain speakers with views the state disfavors, namely “prolife pregnancy centers.” Br. for Pet’rs at 31. They point out that the exempted categories include primary care physicians and obstetricians-gynecologists in private practice, facilities that offer women the full range of reproductive options and services, clinics licensed under other provisions, and abortion clinics. Id. at 31–32 (citing to Cal. Health & Safety Code §§ 1204, 1206(h)). Their claim, in essence, is that the required notice imposes a disproportionate burden on clinics that share their views with regard to abortion. Because this case concerns a motion for preliminary injunction, however, the record below is limited, and we, like the district court, find it insufficient to support these assertions. Harris, 2016 WL 3627327 at *10. Petitioners also argue that the LFD compels licensed clinics to “mouth ideas that contradict their own convictions,” by requiring them “to facilitate the spread of pro-abortion information and . . . to encourage the very act they exist to help women avoid.” Br. for Pet’rs at 24. Were their characterization of the disclosure requirements accurate, the statute would be constitutionally problematic and strict scrutiny would apply for the reasons discussed above. But the FACT Act does not compel the communication or endorsement of a belief, political statement, or ideological message. Instead, it requires disclosure of factual and neutral information about the availability of state resources with respect to family planning and information about how to determine one’s eligibility for such programs. It easily falls within the state’s police powers to ensure that women have access to and receive timely and comprehensive reproductive health care as part of their general medical well-being. Moreover, it is “truthful and not misleading.” 505 U.S. at 882 (plurality opinion). We have noted that “[m]en and women of good conscience can disagree, and we suppose some always shall disagree, about the profound moral and spiritual implications of terminating a pregnancy.” Id. at 850. Nevertheless, the mere mention of the word “abortion” as part of a description of the “comprehensive family planning services” that the public programs provide does not in and of itself make the notice ideological. The notice does not endorse abortion (or any form of contraception). Nor does it describe abortion as preferable to childbirth. It simply makes the factually true, and medically relevant, statement that abortion, in addition to prenatal care, is among the various reproductive services that the public programs offer. And

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it ensures that this reaches women, particularly low-income women, in a timely fashion, which is so essential to maximizing women’s reproductive health and autonomy. Moreover, the LFD does not preclude clinics that oppose abortion from making their views clear. A clinic could post a larger sign next to the notice declaring its “pro-life” stance in bold and unequivocal language. Staff members could greet patients with that message, or providers could share their views with patients. Even if the clinics do not expressly articulate their views against abortion, patients are unlikely to construe the notice as an expression of the clinic’s views regarding abortion, one way or another. The LFD is consistent with the many notices the government requires medical facilities to display, such as notices providing information about a medical facility’s health care professionals, their obligations to the patients, patients’ rights, and warnings regarding “dangerous substances used in treatments.” Br. for State Resp’ts at 42–43. Further, the LFD requirement is entirely consistent with the disclosure mandates we upheld in Casey in that the information required in both cases is “truthful, nonmisleading information.” 505 U.S. at 882 (plurality opinion). The Casey disclosure mandate, however, included not only medical information about the risks associated with childbirth and abortion, but also information about fetal development, child support, assistance for pregnancies carried to term, and adoption that has “no direct relation to [the woman’s] health.” Id. Part of the justification for our holding in Casey was grounded in the erroneous conclusion that the informed consent mandate was “no different from a requirement that a doctor give specific information about any medical procedure.” Id. at 884. In fact, our decision in Casey was in direct conflict with prior decisions invalidating similar disclosure mandates as “outright attempt[s] to wedge the [state’s] message discouraging abortion into the privacy of the informed consent dialogue between the woman and her physician.” Thornburgh v. Am. Coll. of Obstetricians & Gynecologists, 476 U.S. 747, 794 (1986). For example, in Akron v. Akron Ctr. for Reprod. Health, 462 U.S. 416 (1983), we examined a city ordinance requiring physicians to inform women about not only medical risks of abortion and pregnancy, but also nonmedical information. The ordinance required statements about “‘the availability of agencies to provide . . . assistance and information with respect to birth control, adoption, and childbirth.’” Id. at 442 (quoting Akron Codified Ordinances § 1870.06(C) [1978]). It also required a declaration that “‘the unborn child is a human life from the moment of conception.’” Id. at 444 (quoting same). Although we reasoned the state may require disclosure of “‘all attendant

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circumstances – psychological and emotional as well as physical – that might be relevant to the well-being of the patient,’” id. at 443 (quoting Colautti v. Franklin, 439 U.S. 379, 394 [1979]), we deemed the ordinance unconstitutional because the state may not enact “abortion regulations designed to influence the woman’s informed choice between abortion or childbirth,” id. at 444. Similarly, in Thornburgh, a Pennsylvania statute imposed detailed informed consent requirements for abortion, including statements about the potential availability of benefits for prenatal care, childbirth, and neonatal care, as well as the father’s potential liability for child support. 476 U.S. at 760–761. It also required the physician to provide printed materials informing the woman about agencies that could assist her in carrying her “child to term,” seeking adoption, or raising her child. Id. at 761 (citing 18 Pa. Cons. Stat. § 3208(a)(a) [1982]). Because many of the mandated disclosures were “‘designed not to inform the woman’s consent, but rather to persuade her to withhold it altogether,’” id. at 762 (quoting Akron, 462 U.S. at 444), we found the statute unconstitutional. Specifically, we viewed the required statements about medical assistance benefits or child support obligations as “poorly disguised elements of discouragement for the abortion decision,” and therefore the “antithesis of informed consent.” Id. at 763–764. Our plurality opinion in Casey essentially overturned these decisions. Although the issue of whether we erred in reversing Akron and Thornburgh is not before us today, we highlight two reasons Casey was improperly decided and how the LFD differs. First, Casey incorrectly declared that the statute at issue was “no different from a requirement that a doctor give specific information about any medical procedure.” Id. at 884. In requiring disclosure of nonmedical information, such as information about child support and adoption, which is not medically relevant, it went beyond, and was inconsistent with, what informed consent typically requires. Nadia N. Saiwicki, The Abortion Informed Consent Debate: More Light, Less Heat, 21 Cornell J.L. & Pub. Pol’y 1, 32 (2011); Rebecca Dresser, From Double Standard to Double Bind: Informed Choice in Abortion Law, 76 Geo. Wash. L. Rev. 1599, 1614–1615 (2008); Arato v. Avedon, 858 P.2d 598, 609 (Cal. 1993) (describing a “therapeutic limitation inherent in informed consent” that does not obligate the physician to disclose nonmedical information that goes beyond the “therapeutic focus”). In contrast, the LFD requirement at issue here is truly consistent with informed consent principles. It is directly and medically relevant to the patients that enter the clinic. It provides time-sensitive information to women regarding clinics that will not only inform them of all of their medical options but will also give them the opportunity to pursue any legal, medical option. In

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addition, it provides contact information for women to find out if they qualify for free or low-cost care. In short, it aims to ensure that pregnant women, in accord with the goals of informed consent, can make decisions consistent with their medical needs, personal circumstances, and beliefs. Second, in Casey, we wrongly suggested that, as long as the information required is “truthful, nonmisleading information,” 505 U.S. at 882, the state can “further its legitimate goal of protecting the life of the unborn by enacting legislation aimed at ensuring a decision that is mature and informed, even when in so doing the State expresses a preference for childbirth over abortion.” Id. at 883. Disclosure mandates, even if truthful and not misleading, intended to promote the state’s interest in discouraging abortion by trying to persuade women not to have them are the “antithesis of informed consent.” Thornburgh, 476 U.S. at 763–764. Indeed, the mandated disclosures about nonmedical information regarding adoption and child support upheld in Casey potentially raise viewpoint discrimination concerns. In contrast, the LFD requirement has no goals to further the state’s agenda other than to encourage women to have access to information related to all their health care (as opposed to nonmedical) options. Therefore, no issues of viewpoint discrimination arise with respect to it. Given that Casey did uphold mandated disclosures, however, Petitioners try to distinguish the First Amendment issue in Casey from the issue in this case. They emphasized in their brief and oral arguments that Casey was limited to informed consent requirements associated with a medical procedure, specifically abortion, whereas the requirements of disclosure in this case are not based on a particular procedure. Br. for Pet’rs at 47–49; Tr. of Oral Arg. at 8–9 (Kagan, J. noting that the petitioner’s attorney suggested that “everything turned on whether a medical procedure was going to be performed.”) That is too narrow an understanding of informed consent. Access to “accurate and unbiased information about [a patient’s] medical options” is an essential part of the informed consent process, ACOG, supra, at 407, whether or not a particular procedure is being considered. See Truman v. Thomas, 611 P.2d 902 (Cal. 1980) (requiring informed consent for patients choosing not to undergo a medical procedure). In clinics that screen for breast cancer in some states, for example, physicians must provide patients who have received a breast cancer diagnosis with “a written summary of alternative efficacious methods of treatment,” whether or not a procedure was requested. See, for example, Cal. Health & Safety Code Ann. § 109277. Informed consent obligations can apply even when no diagnosis has been made. See Truman, 611 P.2d at 902 (requiring informed consent for a screening test before a diagnosis was made). The general standard of care in medicine encompasses the obligation

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to disclose information about a patient’s condition, instructions for self-care, precautionary therapy for the future, alternative therapies, limitations and risks of treatment, etc. “when the exigencies of reasonable care call for it.” Canterbury v. Spence, 464 F.2d 772, 781 (D.C. Cir. 1972). In the case before us, the medical condition at issue is pregnancy. This condition presents even greater risks than the procedure (abortion) that Petitioners believe distinguishes the informed obligations in Casey from this case. As a result, because the required disclosure here involves “truthful, nonmisleading information” as part of the informed consent process, intermediate, not strict, scrutiny applies. A Having concluded that the Licensed Facility Disclosure (LFD) falls within this interim category of speech, we turn to the intermediate scrutiny analysis. Under this test, “the State must show . . . that the statute directly advances a governmental interest and that the measure is drawn to achieve that interest.” Sorrell, 564 U.S. at 572. In the case before us, California has a substantial, if not compelling, interest in the health of its citizens and, more specifically, in ensuring that women receive timely access to comprehensive reproductive health care. All women require such care, but women with unintended pregnancies and low-income women are especially vulnerable to delays in receiving such care. Delayed or inadequate prenatal care can threaten the health of the woman because of risks associated with pregnancy; health-related conditions exacerbated by pregnancy; or failure to screen for sexually transmitted infections (STI), substance abuse, domestic violence, perinatal depression, and the like. Br. for the Am. Acad. Of Pediatrics et al., as Amici Curiae Supporting Resp’ts at 9–11. It can also pose risks to the fetus or future child through complications associated with maternal STIs and delayed detection of treatable conditions. Id. at 8. And it can delay abortions, which itself poses health risks for women. Women who have decided to terminate a pregnancy face greater risks if the abortion is delayed, simply because the abortion-related risks and burdens increase as the pregnancy advances. In addition, women who decide to terminate a pregnancy because of pregnancy complications or concomitant health conditions face additional health risks associated with the prolonged pregnancy if abortions are delayed. Id. at 19–23. Finally, delays in access to adequate prenatal care increase health care costs. Id. at 23. The statute, therefore, is directed toward overcoming some of the barriers to receiving timely prenatal care for all pregnant women, but especially those who face the greatest obstacles to receiving such care. Although California provides

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and has publicized the availability of public programs that offer free or low-cost reproductive care, many women, most especially women eligible for these programs, remain unaware of them. The State’s efforts to address these informational and access barriers is therefore easily a substantial, if not compelling, governmental interest. See Posadas de P.R. Associates v. Tourism of P.R., 478 U.S. 328, 341 (concluding that the state’s interest in “the health, safety, and welfare of its citizens constitutes a ‘substantial’ governmental interest”). We also find the LFD sufficiently narrowly drawn to survive intermediate scrutiny because the State’s interests are “proportional to the resulting burdens placed on speech” and the law does not “seek to suppress a disfavored message.” Sorell, 564 U.S. at 572. In this case, the law was enacted to address a problem unsolved by prior State efforts to advertise the availability of public programs that offer family planning services. It was not intended to make the Petitioners, or clinics like them, offer reproductive care to which they are morally opposed. The law simply requires a statement about the availability of such programs with contact information for interested women to learn about their eligibility. The compelled disclosure is factual and limited to the least amount of speech necessary to convey the information. Its message is neutral and non-ideological. Moreover, the Petitioners are free to express their views about abortion, contraception, or any other controversial matter or issue. All that is required is that the clinics post information that ensures that women understand the full scope of their constitutionally protected, Casey, 505 U.S. at 846, and time-sensitive reproductive options, including abortion. Some, or maybe many, women will be happy to receive only the services provided by the clinics that post these notices. Others may be eager to learn about and access the public programs. Petitioners argue that California has not used the “least restrictive means of advancing” its governmental interest. Br. for Pet’rs at 50. They suggest alternative methods for the State to promote its message, such as state publications, television advertisements, postings in county health departments, etc. Id. at 55–56. We note first that, because the appropriate test is intermediate scrutiny, the State is not obligated to use the least restrictive means. What is required is “‘a fit that is not necessarily perfect, but reasonable; that represents not necessarily the single best disposition, but one whose scope is “in proportion to the interest serviced,”. . . that employs not necessarily the least restrictive means, but . . . a means narrowly tailored to achieve the desired objective.’” McCutcheon v. Fed. Election Comm’n, 572 U.S. 185, 218 (2014) (quoting Bd. of Trustees of State Univ. of N.Y. v. Fox, 492 U.S. 469, 480 [1989]). Thus, although there are arguably other approaches the State could have taken to try to inform women about the public programs, that alone does not make the LFD provision statute invalid.

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More importantly, the alternatives the Petitioners propose are not likely to be as effective as the LFD in ensuring that women, particularly pregnant women, receive information about and access to all their reproductive options in a timely fashion. California’s statute achieves this goal by directing its requirements toward “free clinic[s] or community clinics” most likely to see low-income women, Br. for State Resp’ts at 28, the very women in greatest need of the required message and most vulnerable to limited information. Indeed, many of the clinics to which the LFD applies actively seek out lowincome women and women with unintended pregnancies. Id.; Alice X. Chen, Crisis Pregnancy Centers: Impeding the Right to Informed Decision Making, 19 Cardozo J.L. & Gend. 933, 934, 951 (2013); Vicki Saporta, Targeting the Vulnerable: Crisis Pregnancy Centers Deceive, Rewire News, (Apr. 1, 2008), [https://perma.cc/8G58-YYBU]. Moreover, the statute requires the notice in clinics where women may not realize the scope of health care services is limited because in many ways they resemble full-service medical clinics. Chen, supra, at 951–953. Given the time-sensitive nature of reproductive care, there is urgency in women receiving factually accurate and neutral information about the full scope of health care available to them as soon as possible. One would expect the LFD to reach these women far earlier than would be possible had the State adopted Petitioners’ suggestion of posting notices in county health departments. Thus, there is clearly a good “‘fit between the legislature’s ends and the means chosen to accomplish those ends.’” Sorell, 564 U.S. at 572 (quoting Fox, 492 U.S. at 480). Our decision in Casey only underscores the fact that any burdens on the Petitioners’ speech are proportional to the interests served. The statute challenged in Casey was actually more burdensome, yet it survived First Amendment scrutiny. That statute required physicians themselves to deliver information about gestational age, health risks of abortion and childbirth, as well as the availability of printed information regarding medical assistance for childbirth, child support, and adoption. In contrast, under the FACT Act, no provider must utter a word. Instead, the clinics have the option to convey the message via a sign in the waiting room, distribution of a printed notice, or distribution of a digital notice upon arrival or check-in. Cal. Health & Safety Code Ann. § 123472(a). B Finally, we take a moment to address the broader and troubling implications of the Petitioners’ attempt to distinguish Casey from this case. If the State can, under the First Amendment, require disclosure of factually accurate,

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nonmedical information intended to push women toward a particular decision regarding a matter as personal and controversial as abortion, then surely the State can mandate notices about public programs that offer the full spectrum of reproductive medical care in the context of offering reproductive health services with no government objective to try to persuade women to choose any particular reproductive decision. Any other conclusion is simply inconsistent. “[W]hat is sauce for the goose is normally sauce for the gander.” Heffernan v. City of Paterson, 136 S. Ct. 1412, 1418 (2016). At stake in our ruling today, however, is more than just consistency and evenhandedness. Treating Casey differently from this case, when both scenarios concern information provided as part of medical and reproductive care, would signal that there is something special or exceptional about abortion, a procedure that uniquely affects women. Indeed, it would perpetuate the exceptionalization of abortion that Casey exhibited when it reversed the holdings in Thornburgh and Akron that the state cannot intrude on the informed consent process to try to persuade women not to have abortions. In so doing, Casey sanctioned state efforts to require disclosures with respect to abortion that go beyond, and are inconsistent with, what informed consent doctrine requires in other medical scenarios. Dresser, supra, at 1614–1615; Sawicki, supra, at 32; Tr. of Oral Arg. at 23–24 (Kagan, J., noting that disclosure about paternal liability for child support doesn’t “have much to do with informed consent.”) It was also paternalistic in its “woman-protective approach,” Dresser, supra, at 1616. Most troubling, it allowed states to use informed consent principles as a mechanism to put its thumb on the scale of a deeply personal decision, faced only by women, particularly when the public is deeply divided over this issue. To now hold, as Petitioner’s request, that the LFD violates the First Amendment, when we previously held that the Pennsylvania statute did not, would further exceptionalize abortion and the women who seek abortions. It would treat disclosure obligations regarding medical options with respect to pregnancy as less important than disclosure obligations regarding abortion, even though the former presents more risks than the latter. Worse, it would signal that women seeking abortions need extra assistance in the decisionmaking process, whereas women pursuing other reproductive choices do not. There is no evidence, and none was offered, however, to support that view. If anything impedes the decision-making process with respect to reproduction, it is not the nature of the procedure a woman seeks or the fact that only women can undergo that procedure. Instead, it is societal and structural obstacles that make it difficult for women, especially low-income women, to access comprehensive reproductive care and to do so early enough to act on any medically

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and legally legitimate option they choose. The LFD requirement attempts to address some of the barriers to care that poverty or unintended pregnancies can present. As a result, we find its aims far less paternalistic that those of the disclosure requirements at issue in Casey. Ultimately, our holding influences whether women have access to the full spectrum of reproductive options, which is a vital aspect of “a woman’s autonomy to determine her life’s course, and thus to enjoy equal citizenship stature.” Gonzales, 550 U.S. at 171 (Ginsburg, J., dissenting). Therefore, evenhandedness and consistency in upholding the disclosure requirements of the LFD after our ruling in Casey is essential to promote equality and to avoid exceptionalizing the women who seek abortions and the health care of women, generally. For all of these reasons, we conclude that the LFD easily meets the intermediate scrutiny test and does not violate the Petitioners’ First Amendment interests.

v We turn next to the Unlicensed Facility Disclosure (UFD), which requires unlicensed clinics to provide notices indicating that they are not licensed and have no licensed medical providers to perform or supervise any medical services they provide. Again, the Petitioners assert that the requirement not only compels speech, but is both content-based and viewpoint discriminatory in its “purpose and actual effect.” Br. for Pet’rs at 18. We find that, like the LFD, the UFD notice provision does compel speech and is content-based, but it is not viewpoint discriminatory. In addition, although strong arguments justify a rational basis test, we conclude that the statute survives any, even the highest, standard of review – strict scrutiny. A Because the UFD requires a statement indicating that the applicable clinics are not licensed, it compels speech and is content-based. But, like the LFD requirement, the information that must be disclosed in the notice is neutral and factual. The Petitioners’ challenge is not that the statement is false, but that the law requires them to speak the “government’s message” and requires them to “mouth ideas that contradict their own convictions.” Id. at 24. We disagree. It is impossible to find anything ideological in the required statement that a clinic is not “licensed as a medical facility” and does not have a “licensed

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medical provider who provides or directly supervises the provisions of services.” Cal. Health & Safety Code Ann. § 124372(b). Moreover, the notice about the absence of a license does not in any way contradict any convictions the Petitioners or any other unlicensed clinic might hold. It does not compel the speaker to express an opinion, ideological position, or adopt a viewpoint of any kind, let alone one contrary to their beliefs. Indeed, it does not ask these clinics to express a statement with which they do not agree. It does not even reference the very procedure to which the Petitioners are opposed – abortion. Again, part of the clinic’s claim of viewpoint discrimination is that they believe the notice was created with the ‘“express purpose’ of burdening particular speakers,” Br. for Pet’rs at 34 (quoting Sorrell, 564 U.S. at 565), namely groups like them, who hold an anti-abortion view and who try to encourage women with unplanned pregnancies to choose birth over abortion. Id. at 5. It certainly does not do so on its face. Nor does the limited record support the conclusion that this was the goal of the UFD. Even if many of the unlicensed clinics to whom the notice requirement applies hold these views, it does not mean the purpose of the Act is to target those clinics at all, let alone for their views. Were other unlicensed clinics motivated by different ethical or political reasons to offer the same services as the typical crisis pregnancy center – ultrasounds, pregnancy testing, pregnancy counseling, and the collection of health information —the state interest in their disclosing their unlicensed status would be just as great. Women should not be denied this vital, time-sensitive information, whatever the moral or religious views of unlicensed facilities that offer medical services. We would rule the same way if all of the unlicensed clinics to which the law applied offered such services to encourage women to have abortions. The notice targets groups based on the fact that they offer medical services as unlicensed entities, not because of their political, religious, or moral views. In other words, the restriction is not based on viewpoint, but based on the State’s interest in regulating health care. Whereas the LFD implicates speech integral to the doctor-patient relationship, the UFD does not. In fact, the very point of the latter notice requirement is to make clear that the interactions are not part of such a relationship so that women are not confused or misled into believing they are going to receive medical care from licensed professionals. Thus, our analysis of the constitutionality of this notice requirement differs from our analysis of the LFD, which regulates speech in the context of the delivery of professional services, like health care. Instead, the UFD law is consistent with many requirements we have upheld where the state regulates speech to ensure that individuals understand the nature of the relationships into which they enter. See

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Zauderer, 471 U.S. at 651 (upholding requirement that an attorney describes “the terms under which his services will be available”); Riley v. Nat’l Fed’n of Blind, 487 U.S. 781, 799 & n.11 (1988) (noting that the First Amendment would allow requirements that professional fundraisers “disclose their professional status”). Further, this legislation falls within the well-established police powers of the State that justify the very licensing the notice discusses. The State has the authority to require licenses for the practice of medicine to protect its citizens “against the consequences of ignorance and incapacity as well as deception and fraud.” Dent, 129 U.S. at 122 (upholding medical licensing requirements). If the State has authority to require licensing, surely it is entitled to require disclosures about the fact that entities that provide medical services and resemble medical facilities are not actually licensed. In fact, we find this notice requirement similar to the many kinds of content-based disclosure requirements that the government imposes to protect consumers in all contexts, such as securities disclosure requirements or consumer protections, like signs at petting zoos. See Reed, 135 U.S. at 2235 (Breyer, J., concurring in judgment). Were we to find the UFD notice constitutionally invalid, it would be difficult to justify allowing related kinds of notices intended to protect the public like the cancer risks of cigarettes, the threats to pregnancy of alcohol use, or any side effects associated with pharmaceutical drugs. Nothing about the UFD notice requirement distinguishes it from notices like those, which are intended to protect the public. We have previously applied a rational basis test to requirements that attorneys disclose the terms of their services, Zauderer, 471 U.S. at 651; Milavetz, 559 U.S. at 250–253 (same). However, we have also implied that strict scrutiny applies to disclosure requirements regarding the professional status of professional fundraisers. Riley, 487 U.S. at 799 n. 11. Because the UFD requirement does not entail viewpoint discrimination restrictions, and because disclosures about the licensure status of those who provide medical services is so directly tied to the police powers that allow the State to regulate health care, we believe the statute need only be reasonably related to a State interest. Nevertheless, we find that this statute survives even under strict scrutiny analysis. B To demonstrate both that the UFD satisfies even strict scrutiny and to guide lower courts in cases in which strict scrutiny would be the correct standard, we offer our analysis. Strict scrutiny requires a showing that the statute is narrowly

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tailored to a compelling state interest. See, for example, Boos v. Barry, 485 U.S. 312, 319, 324 (1988) (striking down a law restricting political speech because it was not narrowly tailored to serve a compelling interest and thus violated strict scrutiny). C In this case, contrary to Petitioners’ claims, the State has a compelling interest in ensuring that pregnant women understand whether or not they are receiving medical services from licensed providers or clinics and, in particular, that they learn this information quickly to ensure they receive essential prenatal care from licensed providers as soon as possible. The state interests here are twofold. First, the State has a strong interest in ensuring that women have information about and access to all their constitutionally protected options regarding their pregnancy, whether it be carrying the pregnancy to term or choosing pregnancy termination. Timing is of the essence with pregnancy so that women have all options before them. Second, the State has a strong interest in ensuring that any health risks related to the pregnancy are identified as soon as possible for the well-being of the woman and of the fetus, if she plans to carry her pregnancy to term. Without question, these are compelling state interests. See Posadas de P.R. Associates v. Tourism of P.R., 478 U.S. 328, 341 (concluding that the state’s interest in “the health, safety, and welfare of its citizens constitutes a ‘substantial’ governmental interest”). In fact, Petitioners offer little to show that the State interest is not compelling here. They merely argue there is no “evidence of any confusion about what these centers do and do not provide,” and that the State has not identified “‘an “actual problem” in need of solving.’” Br. for Pet’rs at 51 (quoting Brown v. Entm’t Merchs. Ass’n, 564 U.S. 786, 799). We note that this case involves a preliminary injunction, and therefore the record is not as well-developed as it would be if the procedural posture were different. Even without a full record, we are persuaded that the State enacted the FACT Act to address a serious problem that is “potentially real not purely hypothetical.” Ibanez v. Fla. Dept. of Bus. & Prof’l Regul., Bd. of Accountancy, 512 U.S. 136, 146 (1994). The very nature of the services the unlicensed clinics provide could easily lead to confusion about the scope of their services and whether they can attend to all of the health care needs of a pregnant woman, whatever her choices regarding the pregnancy. Not all clinics indicate that their prenatal care is not comprehensive. Moreover, many of the clinics to which the FACT Act applies have features resembling what a woman might expect when seeking prenatal care. For example, the statute applies to

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unlicensed clinics that provide medical services like ultrasound, pregnancy testing, and pregnancy diagnosis; that advertise or solicit pregnant women with the offer to provide such services as well as pregnancy counseling; and/or that collect health information from their clients. Cal. Health & Safety Code Ann. § 123471(b); Chen, supra, at 935–936; Br. for State Resp’ts at 6 (citing NARAL Pro-Choice America, Crisis Pregnancy Centers Lie: The Insidious Threat to Reproductive Freedom, 15 (2015), [https://perma.cc/GZ83–4D7K)]. Some may even mislead, intentionally or not, through advertising that falsely suggests they provide full options or by using names similar to those of nearby abortion clinics. Chen, supra, at 950–952. Unintentionally or not, they may also give the false impression that they are licensed medical facilities if their staff members wear lab coats, their physical spaces look like medical clinics, and they provide medical services, such as ultrasounds and pregnancy testing, that health care providers typically offer. Id. at 934; NARAL ProChoice America, supra, at 15. If they provide medically or legally incorrect information or refuse to answer questions that would reveal the limits of the clinic’s services, they only compound the potential confusion. NARAL ProChoice America, supra, at 12. Finally, because these clinics “seek to provide help and information to women with unplanned pregnancies,” Br. for Pet’rs at 5, the clientele they serve may be under significant stress and therefore uniquely vulnerable to confusion as to whether these clinics offer fully comprehensive health care by licensed professionals. Women’s misplaced reliance on these pregnancy centers could cause them to forego other sources of care, just as reliance on alternative medicine in health care delivery can cause “delays in more appropriate treatment.” Dan J. Tennenhouse, Liability Issues Relating to Alternative Medicine, 1 Attorneys Medical Deskbook § 7:12 (2018); see also Charell v. Gonzalez, 673 N.Y.S.2d 685 (N.Y. App. Div. 1998) (upholding jury verdict finding practitioner of alternative medicine liable for negligence and failure to obtain informed consent following a patient’s recurrence of cancer after the practitioner persuaded her to forego chemotherapy and radiation after a hysterectomy). Even if most women would ultimately discover that the services of these unlicensed clinics are limited, the State has a compelling interest in ensuring that such awareness occurs as early as possible so that pregnant women can receive whatever reproductive medical care they need right away. As the testimony by experts before the State legislature indicated, delays in obtaining health care can have significant negative effects for women who want to end their pregnancies. Sen. Health Comm. Hrg. At 54:16 (June 24, 2015). Such delays can also have serious health impacts on women who want to continue their pregnancies and can potentially present lifelong problems for their future

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infants. Id. (statement of physician who described pregnant woman whose diabetes was untreated at a crisis pregnancy center). Petitioners seem to believe there must be demonstration of fraud and deception to show the law will solve a problem. Br. for Pet’rs at 54. We need not establish whether fraud or deception exists in some or all of the clinics. The mere fact that there can be confusion and the necessity that women receive this information as soon as they enter these clinics in search of prenatal care eliminates any need to demonstrate fraud or deception. Given that the issue before us concerns a motion for a preliminary injunction, the strong possibility of confusion among pregnant women is sufficient to find a compelling state interest. D Finally, we find that the statute is narrowly tailored to this state interest. “[T]o satisfy narrow tailoring, the State ‘must demonstrate that . . . the regulation will in fact alleviate these harms in a direct and material way.’” Br. for Pet’rs at 54 (quoting Turner Broad Sys. v. FCC, 512 U.S. at 664). In this instance, it is hard to think of an alternative approach to achieve the State’s goal of informing pregnant women who attend unlicensed facilities as quickly as possible that they will not receive health care from, or under the supervision of, licensed health care providers. Indeed, the Petitioners provide no suggestions for how this goal might be otherwise be achieved. We emphasize that the notice compels the least amount of speech – only a sentence – necessary to provide factually accurate, medically relevant information. And it does so at the precise moment pregnant women need such information – when they enter these clinics in search of pregnancy-related health care. In fulfilling the compelling nature of the state interest in the least burdensome, most effective and efficient manner, we find, without question, that the UFD notice provision is narrowly tailored to a compelling interest. Thus, it easily survives strict scrutiny. Moreover, we believe such a notice requirement need only survive rational basis, which it surely does given that it satisfies strict scrutiny. The rational basis test requires that the law serves “a legitimate state interest” and that there is “a rational connection between the statute’s/ordinance’s means and goals.” Legal Info. Inst., Rational Basis Test, [https://perma.cc/3RU6-A9NF]; see also Lyng v. Int’l Union, United Auto., Aerospace & Agr. Implement Workers of Am., UAW, 485 U.S. 360, 370 n.8 (describing the test as requiring a statute to be “rationally related to [a] legitimate government objective”). Because the UFD serves a compelling state interest in ensuring that pregnant women

https://doi.org/10.1017/9781108860901.015 Published online by Cambridge University Press

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understand whether or not they are receiving medical services from licensed providers in a timely manner to ensure they receive medically supervised prenatal care as soon as possible, see supra, it clearly also serves “a legitimate state interest.” And in being narrowly tailored to that interest, see supra, a “rational connection” certainly exists between the UFD’s “means and goals.” Thus, the UFD disclosure requirement is unquestionably constitutional under the First Amendment. We hold that Petitioners are not likely to succeed on the merits of their claim that the FACT Act violates the First Amendment. We therefore affirm the judgment of the Court of Appeals.

https://doi.org/10.1017/9781108860901.015 Published online by Cambridge University Press

https://doi.org/10.1017/9781108860901.015 Published online by Cambridge University Press