Health on Delivery: The Rollout of Antiretroviral Therapy in Malawi 9781611323504, 9781611323511, 9781315200743

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Health on Delivery

In 2004, Malawi began to offer antiretroviral therapy to anyone who needed it. This undertaking would have been ambitious for any nation, but it was unprecedented coming from one of the poorest countries in the world. Health on Delivery examines this introduction of state-provided antiretroviral therapy from an ethnographic perspective. Moving from World Health Organization boardrooms in Geneva to clinics held under trees in rural Malawi, it studies the patients, healthcare providers, and policymakers involved, considering how the rollout has impacted their lives and professions. In doing so, it examines both the challenges and successes of an ambitious attempt to provide universal HIV treatment with limited money, infrastructure, and human resources. As well as an important case study, the book also offers an analytic framework to address the processes by which global policy is made and implemented. Engagingly written, Health on Delivery will be interesting reading for students and scholars of both anthropology and public health, as well as related disciplines such as geography, international politics and world development. It will also appeal to the general reader interested in global health policies and world development. Anat Rosenthal is a lecturer in the Department of Health Systems Management and the Tamar Golan Africa Centre at Ben-Gurion University of the Negev, Israel. A medical anthropologist, she studies global health policy and healthcare delivery in resource-limited settings.

Anthropology and Global Public Health Series editors: Emily Mendenhall and Peter Brown This series publishes books at the intersection of medical anthropology and global public health that use robust theoretical and ethnographic insights to develop practical public health solutions. Using accessible language to communicate complex global health problems, they examine concrete failures and successes in global health through an anthropological lens emphasizing historical, ecological, political, and sociocultural contexts. They also showcase leading methodological approaches, both qualitative and quantitative. The series publishes books in two formats: tightly orchestrated edited volumes of original writing, and short, single-­ authored books focused on a particular global health problem. The edited volumes advance major themes and methods and provide instructors with important new tools for integrating medical anthropology and global public health into the curricula of both disciplines. The single-authored books provide an introduction to a problem and literature to date; a case study illustrating key issues and methods; and an analysis of constructive solutions, including broader implications for application in public health programs.

Titles in series Global Mental Health Anthropological Perspectives Edited by Brandon A Kohrt and Emily Mendenhall Pesticides and Global Health Understanding Agrochemical Dependence and Investing in Sustainable Solutions Courtney Marie Dowdall and Ryan J. Klotz The Lives of Community Health Workers Local Labor and Global Health in Urban Ethiopia Kenneth Maes Health on Delivery The Rollout of Antiretroviral Therapy in Malawi Anat Rosenthal

Health on Delivery The Rollout of Antiretroviral Therapy in Malawi

Anat Rosenthal

First published 2017 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 711 Third Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2017 Anat Rosenthal The right of Anat Rosenthal to be identified as author of this work has been asserted by her in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging in Publication Data A catalog record for this book has been requested ISBN: 978-1-61132-350-4 (hbk) ISBN: 978-1-61132-351-1 (pbk) ISBN: 978-1-315-20074-3 (ebk) Typeset in Bembo by codeMantra

To my parents, Miriam (z”l) and Asher David Rosenthal

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Contents

Acknowledgments ix List of Abbreviations xiii 1 Introduction 1 2 Hierarchies of Emergency: Global Policy and the ART Rollout in Malawi 18 3 Stretched Too Thin: Malawi’s National Shortage of Healthcare Workers 44 4 Relationship Matters: Patient and Healthcare Provider Experiences in an Antiretroviral Clinic 72 5 Reaching Out for Health: Strategies to Improve HIV Care in Village Settings 97 6 Conclusion: A Lesson in Healthcare Delivery: How Global Policy Translates into HIV Care, and What We Can Learn From It 112 Index

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Acknowledgments

Many people took part in the work that became this book, and it would be impossible to name them all. None of my fieldwork would have been possible without the openness and support of people in Malawi who were willing to share their thoughts, experiences and daily lives. Although their real names do not appear in this book, their spirits, thoughts, and words are present. I am enormously grateful for their observations, generosity and kindness. In hospitals, clinics, offices, towns, and villages around the country, I could not have been more welcomed. Conducting research in institutional settings provided an opportunity to observe, listen, and discuss the rollout of antiretroviral therapy with a variety of stakeholders. Thanks to the patients, family members, nurses, clinical officers, physicians, lab technicians, hospital cleaners, and administrators for their ­patience with my persistent shadowing and endless questions. Throughout, I was amazed by their dedication and generosity to their loved ones, patients and fellow health workers. Although I promised to protect their privacy, and thus cannot name them here, I am truly grateful. Joyce and Hans Andersen gave me a home to come back to in the central region of Malawi, and more good advice than I could have ever wished for. In the southern region, the Zomba home was much more than a house, and for that I thank Peter Fleming and his remarkable generosity, Andy Fleming, Niall ­Keleher, Sara Yeatman, Crystal Biruk, and Kim Yi Dionne. Keith Joseph gave me an indispensable introduction to the intricacies of providing healthcare services in Malawi. The Department of Sociology and Anthropology, the Faculty of Social Sciences and the Joseph Levy Post-Doctoral Fellowship, at the ­Hebrew ­University of Jerusalem, supported fieldwork in Malawi. Vered ­Vinitzky-­Seroussi and Guy Stecklov provided helpful support. I am forever grateful to Susan W ­ atkins and Alexander Weinreb for bringing me to Malawi in the

x Acknowledgments

first place, and for their continuing advice. Agnes Chimbiri, Alister ­Munthali, Esnat ­Sanudi, and Memory Phiri were the best teachers and guides one can ask for in the field—Zikomo Kwambiri. The first stages of analysis for this book were conducted while I was a F ­ ulbright Postdoctoral Fellow at the Department of Global Health and Social Medicine at Harvard Medical School. I am grateful for the invitation extended to me by Jim Yong Kim and Paul Farmer to come to Harvard to think about issues of healthcare delivery, and to Bill Rodriguez for getting the delivery bug into my system. At Harvard, the Global Health Delivery Project provided a great environment to interact with brilliant scholars who were thinking about healthcare delivery. Erin Sullivan, Rebecca Weintraub, Aaron Beals, Joaquin Blaya, Sophie Beauvais, and many others were wonderful partners for conversations about the challenges of healthcare delivery in resource-limited settings. These conversations planted many seeds for ideas developed in this book. I developed this book further with the help of supportive colleagues at the Montreal Health Equity Research Consortium, and the Institute for Health and Social Policy at McGill University. I thank Daniel Weinstock and Nicholas King for recognizing the promise this book held before I did, and also for providing the perfect environment to think about global health policy and its implementation. Vardit Ravitsky and the Centre de recherche en éthique (CRÉ) at Université de Montréal introduced clarity (and French) into la vie Montréalaise. Montreal was the home of one of the best intellectual communities I have ever been part of. I am grateful to Kristin Voigt, Leticia Morales, Gry Wester, J­urgen De W ­ ispelaere, ­A rjun Tremblay, Adina Preda, Mark Daku, Andrée-Anne C ­ ormier, Ryoa Chung, Valéry Giroux, Matthew Hunt, Iwao Hirose, Sam Harper, Marc-Antoine Dilhac, Christine Tappolet, Mauro Rossi, Marie-Noëlle Carré, Jean-Philippe Royer, Jon Huang, Pippa Bird, Zinzi Bailey, Yael Peled, Tarik Benmarhnia, Heather Whipps, and Laura Bisaillon for their friendship, help, and support. This book would not have been possible without my brilliant colleagues and mentors in medical anthropology, global public health, and medicine. I am fortunate to be a part of a vibrant community of scholars that is a constant source of inspiration. I am grateful to Sarah Willen (for more things than I could ever list), Svea Closser, Peter Brown, Deogratias Niyizonkiza, Erin Finley, Emily Mendenhall, Dziwe Ntaba, Jenny Trinitapoli, Anika Wilson, Kenneth Maes, Tsipy Ivry, Ezra Gabbay, Mira Levinson, Victor Azarya, Peter Shulman, Melino ­Ndayizigiye, Don Seeman, Elly Teman, Amy Rosenberg-Weinreb, James ­Levinson, Heide Castañeda, Mark Katz, Maureen Malowany, David K ­ atzenstein, Caroline Maposhere, Dani Filc and Tobin Greensweig for numerous conversations on theory and practice. Colleagues outside medical anthropology also showed endless patience as they were dragged into this project. Nir Gazit, Yael Maoz-Shai, and Karen Stern provided essential comments and feedback on the manuscript, even though health was never the focus of their own studies. Their friendship, as well as their analytical brilliance and sharp eye, are a gift.

Acknowledgments  xi

My new home at Ben-Gurion University of the Negev is a source of joy and pride. The Department of Health Systems Management provided me with the perfect environment for work, financial support, and the belief that I could finish this book. I am grateful to Nadav Davidovitch, Dan Greenberg, Gabi Bin Nun, Paula Feder-Bubis, Avishai Goldberg, Tuvia Horev, Jacob Moran-Gilad, Joseph Pliskin, Tzahit Simon-Tuval, Dina Van Dijk, Malka Meirson, Vered Ofek, and Yuval Yermiahu. On the other side of campus, the Tamar Golan Africa Centre provided critical support for this book, while Lynn Schler and Ruth Ginio took me on as a friend and a colleague without hesitation. You are the best. Thanks to Ben-Gurion University’s President Rivka Carmi, the Rector, Zvi HaCohen, and the Dean of Health Sciences, Amos Katz, for generously supporting the last stages of the publication of this book. On a more personal note, I thank my extended Rosenthal-Chen family for being my support network. In the past I had thanked my parents, Miriam (z”l) and Asher Rosenthal, for giving me "a room of my own", but I had no idea how important their support was until I traveled far and beyond. I will always be grateful for the home you built for us, and for your unbounded love. Tal Tocker, Guy Rosenthal, and Amir Tocker are role models and an inspiration to me. Yuli, Tomer, and Itay Tocker are a source of pride and hope for the next generation. I am grateful to Galia Chen for her endless wisdom, and to Haviva Eyal for her friendship. My grandparents Anya and Joseph Rosenthal and Mordechai and ­Nechama Chen are always with me in spirit. Being embraced by the Levinson-­ Peris family made me feel at home even across the Atlantic. Two writing retreats provided the perfect environments for the completion of this book. Yael, Yair, Alma and Iftach Shai created a magical world for me in Andorra, and Svea Closser, Kaif Rehman, and Matt Luck did the same in Vermont. This book would have never been written without you. Your wonderful cooking also helped. The idea to write a whole book about healthcare delivery was first floated by Peter Brown and Emily Mendenhall. Their commitment to this project left me speechless and overwhelmed, and I am forever grateful for that. Routledge and the anonymous reviewers helped push this book to the next level. Svea Closser provided more support than words can describe, and I can never thank her enough. My editor Kristin Harper is not only a miracle worker, but also one of the brightest and kindest people I have ever met. It was a real pleasure transforming ideas into a book under her care. While I was fortunate to be surrounded by many people during the writing of this book, the errors and mistakes in it are all mine. Much like healthcare delivery, life is a work in progress, and we can only aspire to do better next time.

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List of Abbreviations

AIDS Acquired Immune Deficiency Syndrome ART Antiretroviral therapy ARV Antiretroviral drugs CHAM Christian Health Association of Malawi DAH Development Assistance for Health DFID UK Department for International Development EHRP Emergency Human Resource Program EMR Electronic Medical Records GFATM The Global Fund to Fight AIDS, TB, and Malaria HIV Human Immunodeficiency Virus Health Surveillance Assistants HSA International Monetary Fund IMF Ministry of Health MoH National AIDS Commission NAC Non-Governmental Organization NGO Orphans and Vulnerable Children OVCs The U.S. President's Emergency Plan for AIDS Relief PEPFAR Prevention of Mother to Child Transmission PMTCT Treatment Action Campaign TAC TB Tuberculosis UNAIDS The Joint United Nations Programme on HIV/AIDS UNDP United Nations Development Program UNICEF The United Nations Children's Fund VCT Voluntary Counseling and Testing WHO World Health Organization

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1 Introduction

Mphatso learned she had HIV when she was admitted to the district hospital with pneumonia. Lying in a bed she shared with another patient in an overcrowded female ward, with dozens of patients’ relatives standing and sitting on every available surface in the ward’s hall, Mphatso realized that her frequent illness and exhaustion were the signs of the disease she feared the most. The nurses rushing by and stopping haphazardly by her bed every few hours were almost always too busy to answer her questions, and even if they had had time to talk, Mphatso was not sure what to ask. She had seen many people with HIV, she had heard the rumors in the village about them, and she knew that many of them died at home without treatment. So, she was adamant about finding the care she needed, especially after the nurses told her of the new HIV clinic that had opened at the hospital. A slim, soft-spoken woman in her late twenties and the mother of three young children, Mphatso lived in a village in the central district of Malawi. Although she had moved to her husband’s village after she married, her home village—where her parents and sister lived—was relatively close, and they all came to help care for her in the hospital. Mphatso’s sister and mother stayed at her bedside and cooked her food in the hospital’s courtyard with other patients’ family members. Although Mphatso was too weak to eat, she was grateful for their presence, knowing that patients without family members were left to fend for themselves in a ward short of nurses and support staff. After a week of recovery from the pneumonia, she was released, but the doctors told her to return to the hospital’s HIV clinic as soon as possible— she needed to get a CD4 count, which would determine how far her infection had progressed and whether she was eligible for HIV treatment. (Continued)

2 Introduction

Returning to the hospital was not an easy task, however. It was more than a 6-mile trek from her home in the village, and Mphatso could not afford to pay for a ride on a minibus or a rental bicycle. This was a long walk for a woman still weak from a bout with pneumonia. Several weeks passed before she felt strong enough to make the journey. Finally, one morning she left her children with her sisters-in-law and made her way to the HIV clinic. Although the staff at the hospital had told Mphatso about the new HIV clinic, she was not sure what to expect. She had heard of people being treated for HIV, but these stories were vague and unclear because most people were reluctant to talk about their illness, fearing gossip and stigma. Now, Mphatso was one of them, even though she was not sure what “them” meant. When Mphatso arrived at the clinic in the early hours of the morning, it was already crowded. People were sitting on the stone benches in the waiting room, on the front balcony, and on the grass outside the clinic. The quiet hum of conversation surrounded her, interrupted by bursts of laughter or a crying baby. Although she was nervous, it seemed like other people in the waiting room were calm, as if they knew what to expect and were not worried about it. Mphatso noticed that although some people looked very sick and were leaning on family members or lying on the benches, others looked healthy and were chatting happily. Many looked tired and frustrated as they waited to be seen by the clinic’s staff. It was 3 hours ­before Mphatso was invited to come into the nurse’s office. After a short conversation and a quick look at the documents she had brought from the ward after her hospitalization for pneumonia, the nurse told her that the test she had come for could not be performed at the clinic after all. The nurse was kind and apologetic when she informed Mphatso that the lab was having equipment problems. Instead of being tested at the hospital, she would need to go to a mission hospital, a half-an-hour ride on the bus away, to have the test done—but there, the test was not provided free of charge. By this time, Mphatso’s head was pounding, as it often did when she was sick, but the nurse was unable to offer her anything for her headache because the clinic was out of painkillers. Instead, the nurse suggested she buy some medicine at a local kiosk in the small market outside the hospital. Before Mphatso left the clinic, the nurse told her about life with HIV, encouraged her to convince her husband to get tested, invited her to join a support group in the clinic or find one in her village, and reminded her to get the CD4 count from the mission hospital before her next appointment at the clinic. Mphatso left empty-handed, stopping at a kiosk outside the hospital and spending what little money she had on some Panadol1 for her headache. She began the long walk home knowing that there was no way she could afford to travel to the mission hospital, much less pay for a CD4 count there. Mphatso knew that the nurse knew this as well. Exhausted and with a pounding headache, she made her way back to her village, unsure of what would happen next.

Introduction  3

A few weeks later, Mphatso heard a rumor that the lab at the clinic was up and running again. Having missed her scheduled appointment—which seemed pointless without the CD4 count the nurse had requested—she made another trip to the clinic. Happily, the rumor was correct. The nurse she had seen on her first visit drew her blood and told her to return in 2 days with a companion, someone to act as her treatment supporter, to receive the results. Of course, she was not able to make the long journey again in 2 days, especially because it required her to ask the relatives who had already been watching her children quite a bit to watch them yet again—and this time, she also had to find a treatment supporter to join her on the trip. It was a week before she returned to the clinic with her sister. Although Mphatso’s diagnosis confirmed her fears, Mphatso’s sister found the months of unexplained illness worse and was happy to stand by her sister. When Mphatso arrived at the clinic, she was told that she was ineligible for HIV treatment because her CD4 count was just over the treatment cutoff. Instead, she was prescribed cotrimoxazole preventive therapy, which staves off some of the opportunistic infections to which people with HIV are susceptible. The nurse’s explanation left Mphatso confused. She had made three long journeys to the clinic and back, only to find that she was not eligible for the antiretrovirals she needed. Eventually, Mphatso did start antiretroviral treatment, but it was not until months later, when she was hospitalized again for pneumonia. Mphatso’s health improved quickly. The first thing she noticed was her appetite returning; she was no longer nauseous at the sight of food and could actually hold it in. Then, she started feeling stronger, her headaches and dizziness subsided, and she started gaining weight. Mphatso was grateful to enjoy the fruits of medical science. She was well aware that only a few years ago, obtaining this life-saving treatment free of charge in Malawi would have been unimaginable. But, receiving treatment did not mean that all was resolved for Mphatso. First, now that she was feeling better, and hungry again, she struggled to find enough food to sustain her and her children. Second, although she was stronger, the monthly walk to the hospital to top up on antiretrovirals was still long and often futile, due to drug stock-outs. With no transportation money, each walk to the clinic and back, combined with the long wait there, meant Mphatso was away for the whole day. By the time she returned home from the clinic, she was tired and impatient and her children were restless. No less important, Mphatso was trying hard to keep her illness private for fear of comments she might get from her family and neighbors, but the frequent daylong visits to the clinic made it difficult for her to keep her HIV status a secret. Lastly, when Mphatso needed medicine for the side effects caused by the antiretrovirals, none were available at the clinic. Treatment may have saved Mphatso’s life, but it did not necessarily make it easy.

4 Introduction

The Antiretroviral Rollout in Malawi Mphatso’s story illustrates everything good and bad about being a patient with HIV in Malawi. On the one hand, Mphatso is a citizen of a country that did something amazing. In 2004, it began to offer antiretroviral therapy (ART) to anyone in need. And, there was a great deal of need in this small, sub-Saharan African country. By 2004, an estimated 1 million of Malawi’s 12 million inhabitants were living with HIV; this translated to nearly 15% of adults (UNAIDS/ WHO 2004; WHO 2005). The AIDS crisis was noticeable wherever one went in Malawi. Hospital wards were overcrowded with patients who were dying without treatment, and overworked healthcare providers were frustrated by their inability to assist their patients. In the villages, families and communities were devastated by the disease; in almost every household, someone was sick or dying. Classrooms were overcrowded because so many teachers had been lost to AIDS; shops were closing as shopkeepers died; and carpentry shops converted from making furniture to making coffins, a change that became evident as signs for coffin shops started to replace other advertisements on the side of the road. Although many people were reluctant to openly talk about AIDS, the word was whispered in numerous conversations and its effects were visible everywhere. In the face of this need, Malawi decided to make treatment free of charge in all public facilities—and to limit fees in private ones (Makombe et al. 2007; Muula et al. 2007). To say that Malawi was facing an uphill battle is an understatement. Malawi is one of the least developed countries in the world. According to the 2004 Human Development Report published by the United Nations Development Program (UNDP), life expectancy at birth was 37.8 years, GDP per capita was $580, and 40% of the population did not have consistent access to clean water. In the same year, 76% of the population was reported to have an income of under $2 a day (UNDP 2004), and the country was heavily dependent on international aid. For the 82% of Malawians living in rural areas (WHO 2005), access to clean water was not the only challenge. Most rural communities were not connected to the electrical grid or to sanitation systems, and they had little to offer in terms of quality education or employment opportunities. In addition, rural residents were mostly small-scale farmers in a region that suffered from droughts and floods. These small-scale farmers suffered under economic policies that supported the removal of agricultural subsidies in the name of market liberalization, and they had only limited access to subsidized fertilizers and farm inputs. For the small proportion of the population living in cities, electricity was more accessible, but access to clean water was still an issue. Furthermore, city life limited the possibility to farm, which meant that food required participating in a cash economy when jobs were scarce and low paid. Life in both rural and urban areas was made worse by the AIDS crisis. Rural farmers were unable to cultivate their fields, and urban laborers were too sick to work and found life in the city increasingly expensive without employment.

Introduction  5

In addition, when the ART rollout began, Malawi’s healthcare system was severely underfunded, with total annual expenditures on health a mere $17 per capita (McCoy et al. 2008). Translated to people’s everyday lives, these data meant that health services were very limited in scope. Clinics and hospitals were understaffed, and even when a patient got to see a healthcare provider, medications were often unavailable. This meant that patients and their families had to purchase drugs in private pharmacies. For a population living on less than $2 a day, medications from private pharmacies were unattainable, especially when chronic or complex diseases were involved. In addition, only 50% of the population in the country lived within 5 km (over 3 miles) of a health center (Ministry of Health 2004); health services were, de facto, inaccessible for most of the country’s residents, who were living in rural communities and too poor to pay bus fares. Furthermore, the HIV crisis hit healthcare workers particularly hard, magnifying an already severe shortage of personnel (Kober and Van Damme 2004; ­McCoy et al. 2008; Muula et al. 2007; Palmer 2006; Van Damme et al. 2008). Even within the context of sub-Saharan Africa, the epicenter of the crisis, ­Malawi’s healthcare workforce shortage was striking (McCoy et al. 2008; Van Damme et al. 2008). A study conducted in 2007, based on data from the Ministry of Health and the National AIDS Commission, revealed that only 610 clinicians (clinical officers and physicians), 44 pharmacists, 98 pharmacy technicians, and 7264 nurses were registered in all of Malawi. In a country of over 12 million people, these numbers meant that the current health workforce was unable to serve the needs of the population even without the growing needs created by the AIDS crisis. Providing ART to the 170,000 HIV-positive patients estimated to be eligible for treatment inside Malawi—people whose HIV status met the criteria defined by the Ministry of Health—would require 16% of all nurses, 454.2% of all pharmacists and pharmacy technicians, and 55% of all clinicians to dedicate themselves solely to the care of people with HIV/AIDS (Muula et al. 2007). Clearly, this was not possible. Especially in a country with many competing health concerns, and where many healthcare professionals were already overworked, finding the healthcare workers to deliver therapy was a grinding challenge. This shortage meant that, just prior to the rollout, there were simply not enough healthcare providers to staff hospitals, clinics, and health centers. District hospitals serving catchment areas of over 100,000 people were staffed with single physicians, and the clinical officers and nurses the physicians relied on were also in short supply. Just one or two nurses treated wards that were overflowing with patients. Hospital labs were practically shut down without technicians available to staff them or the electricity needed to operate their equipment. In the more remote rural areas, services were even sparser. Physicians and clinical officers could only be found in towns and cities; so, rural health centers were staffed by lone nurses or health workers. To see a physician or a clinical officer, people living in rural areas had to make the costly trip to the nearest town or city. As a result,

6 Introduction

problems that could not be addressed by the local nurse often went untreated. To make things worse, these needs were constantly growing with the AIDS crisis. HIV/AIDS care is an expensive and complex endeavor by any means. Finding the resources to pay for medications, chronic care, and management and to train healthcare providers specializing in long-term AIDS care requires a concerted effort. Even rich countries, among them the USA, shy away from providing free, universally accessible AIDS care, citing costs and the structure of their health systems as the rationale for failing to provide treatment. Consider for a moment that in 2003, fewer than 1 million people in all low- and middle-income countries combined received ART (WHO 2006). Malawi was proposing to screen and provide ART to a similar number of patients—just within its borders. How was this small, poor country to deliver ART to everyone who needed it?

A Country Transforming: Malawi, 2004–2009 My work in Malawi, which started in 2004, bracketed the ART rollout. I was thus privileged to witness this ambitious plan for healthcare delivery as it played out. During repeat visits to the country, focusing on various research projects, I went back to the same rural communities, health centers, hospitals, and non-­ governmental organizations (NGOs) and was able to observe changes occurring over time. These changes transformed the face of AIDS in Malawi. When I first arrived, in February 2004, AIDS treatment was a privilege enjoyed only by the super-affluent, who could afford to fly to South Africa, and a few lucky urbanites, who had access to services provided by international NGOs for high out-of-pocket payments. In rural communities, the existence of HIV treatment was only a rumor. Although the government decided to provide universal access to HIV treatment in 2004, things did not change overnight. On my visits to Malawi in 2005 and 2006, the situation in most rural areas remained unaltered: No ART was provided. Most facilities offering therapy were located in Lilongwe, M ­ alawi’s capital, and Blantyre, its commercial center, and they were part of big government hospitals or private NGOs. Moreover, treatment almost always still ­required some payment. In rural district hospitals, word about ART was spreading, however, and some hospitals were even opening new clinics, although their operations were very limited. When I returned in August 2007, a brand-new AIDS clinic was operating in a rural district hospital where I had worked in the past. Its staff and facilities may have been limited, but it offered treatment to patients with HIV in the surrounding communities. It also continued to offer mobile counseling and testing clinics, services available in the days before treatment was available. In addition, the staff at the ART clinic met monthly with clients receiving ART and held support group meetings and nutritional support sessions. However, although the staff was eager to recruit new patients, the clinic was unable to reach many potential clients. Many of its “regulars” were hospital employees or people living in the little

Introduction  7

town surrounding the hospital. Rumors of a new HIV clinic were spreading in the villages, but people were reluctant to come. The service was new, and years without available treatment had created distrust, not to mention the fear of unwanted disclosure that was still associated with HIV care in Malawi. When I returned to that clinic in 2008, it had transformed. Now, it staggered under the weight of over 2000 registered patients; the nurses and clinical officers grumbled about being underpaid and overworked. However, the crowd in the waiting room spoke to the demand for testing and treatment in the surrounding communities. This particular clinic, though close to my heart, was in no way unique. Its experience of struggling under such a heavy patient load was shared by many other health facilities around the country. In early 2004, just after the initiation of the new treatment policy in Malawi, 4000 new patients were put on ART countrywide. By the end of 2005, the cumulative number of new patients receiving ART in the public sector was 37,840, representing 47% of the national target at the time (Libamba et al. 2007). By the end of 2006, approximately 60,000 people were on treatment (McCoy et al. 2008). In 2008–2009, I spent 4 months embedded at the clinic. On the 3 days a week that the clinic was open, I shadowed providers or patients to learn about the challenges they faced. When I shadowed a nurse, for example, I would start the day by arranging the treatment room with her, and then I would stay by her side as she saw patients, ran errands, and updated patients’ logbooks. I would also join the staff at lunchtime and the team meetings at the end of the day. When I shadowed a patient, I would stand with them outside, waiting for the clinic to open, follow them to the waiting room, and accompany them to their appointment. These experiences gave me insight into the interactions that took place in and around the clinic. On the days when the clinic was closed, I visited other departments in the hospital to learn about their relationship with the HIV clinic and also conducted, with the help of a research assistant, in-depth interviews with the clinic’s healthcare providers and patients, who talked about their lives, their work, and their thoughts about the past, present, and future of healthcare in Malawi. I conducted over 40 of these open-ended interviews with patients, family and community members, healthcare providers, and local officials. Mphatso’s story and many of the other stories I will share show that there are significant challenges inherent to providing universal access to these important medications in one of the poorest countries on Earth. If, on the one hand, Mphatso is lucky to live in a country that has pioneered the provision of universal ART, on the other hand, she suffers from ingrained problems in health delivery as her resource-poor country attempts to provide free HIV care to all of its citizens. These challenges—the impediments to delivering HIV care in Malawi— are the focus of this book. Using the ART rollout as a case study, I draw on the experiences of patients and healthcare providers to explore the forces that shape healthcare delivery, moving from policy, crafted by healthcare leaders in Geneva and Washington, all the way to practice, as policy from on high is translated into action in the dusty villages of rural Malawi.

8 Introduction

What Is Healthcare Delivery and Why Is It Important? “Imagine you had the cure for HIV, and it was as simple as drinking a glass of water,” commanded the guest speaker. It was late in the fall of 2007, and we were all seated in a university seminar room overlooking the medical school’s finely groomed quad. The seminar, “Challenges to global delivery of HIV treatment,” was packed with medical students, graduate students, and fellows, and everyone was trying to understand where the speaker, a physician working on various HIV treatment projects overseas, was going with his example. The air buzzed with excitement, a combination of the speaker’s wit and passion and the students’ attentiveness as they sat on the edge of their seats. “Imagine all you had to do is let sick people drink your water. How long would it take you to cure AIDS?”

Healthcare delivery is the process by which this imaginary glass of water gets to the people who need it. In public health, we tend to focus on advances. We spend much money and effort trying to develop cures and treatments for diseases. For example, the US National Cancer Institute alone spends almost $5 billion every year seeking to develop insight into cures and better treatments for cancer (National Cancer Institute 2015). The hope is that the next big discovery will revolutionize treatment and save lives. The truth, though, is that we fail to deliver many of the inexpensive and effective cures and treatments that we already have to the people who need them. We have effective and inexpensive vaccines for polio, for example, and have spent $10 billion on a global eradication campaign that began in 1988. Even so, the virus remains stubbornly rooted in Nigeria, Afghanistan, and Pakistan, and it re-emerges in the wake of chaos in places such as Syria and Ukraine. Similarly, we have known for decades that the disfiguring, tropical disease yaws can be cured by a single dose of antibiotics, yet after one failed eradication campaign and in the midst of a new one, the infection is still endemic in 13 countries around the world (WHO 2015b). It would be almost banal to add that humans have known for thousands of years that food is the cure for malnutrition, yet millions still suffer from hunger. The speaker’s point, then, was that even if the cure for AIDS were as simple as delivering a glass of water to a patient, many sufferers would remain. As we know, the treatment for AIDS—and for many other diseases—is substantially more difficult than providing a single glass of water. This failure to deliver a “glass of water” is a failure of healthcare delivery— and healthcare delivery is something we do much less research on, especially in low-income countries. Although the HIV Vaccines and Microbicides Resource Tracking Working Group (2012) estimates that approximately $800 million is spent annually on HIV vaccine development, expenditure on healthcare delivery research has been minimal. Our knowledge of healthcare delivery, especially the

Introduction  9

delivery of health services to the poor, is fragmented at best (Kim et al. 2013). The funds allocated for health systems strengthening, of which delivery research is one part, account for only a small fraction of global health spending, and the actual money spent for this purpose is often even lower than earmarked (Ravishankar et al. 2009). A constructive way to think of challenges to healthcare delivery is to imagine the barriers one encounters when trying to deliver a shipment of HIV medicine from a pharmaceutical company in Switzerland or India to patients in the rural clinic where I worked in Malawi. First, of course, the barrier of drug prices had to be overcome, which involved lengthy struggles involving governments and NGOs around the world and the creation of treaties and partnerships that lowered costs for poor countries. With this done, however, the first leg of the trip is easy enough. In Switzerland, for example, reliable electrical grids keep laboratories and refrigerators cool, refrigerated trucks transport temperature-sensitive medicines, and good roads allow drugs to be transported to functioning airports. Although India’s overall infrastructure may be less reliable than Switzerland’s, its pharmaceutical industry is also equipped with the logistics required to supply the needs of international markets. It is once the medicine reaches a runway in Malawi that the trouble begins. First, the medicine must be stored in a central location and allocated to various health facilities around the country. This is an easy enough task when sophisticated, computerized systems are in place, but, without them, getting pills where they need to go becomes a logistical nightmare. Next, medicine must be transported to clinics, some of which are many miles away, on trucks that may or may not be refrigerated. Many of the clinics are located off the main roads, and some are hard to access on old and under-maintained roads and paths. In addition, the trucks and fuel needed for transport are often in short supply. Once the medicine arrives at the clinic, healthcare workers must rely on undependable electrical grids and generators to keep it cold; although most drugs routinely used in ART do not need to be refrigerated, many other medicines necessary for treating side effects or infections do. A broken cold chain may result in ineffective drugs or delay a shipment of medicines altogether. Indeed, this very last leg of the journey is typically the most difficult. That imaginary glass of water can easily spill, become contaminated, or go missing before it reaches its destination. Moreover, as Mphatso’s story illustrates, even when medicine arrives safely at a clinic, getting patients to the clinic as well represents another considerable hurdle. Roads, airports, electrical grids, refrigerated trucks, refrigerators in clinics and hospitals, and laboratory equipment all are part of the delivery chain. So are trained nurses, clinical officers, community health workers, administrators, laboratory technicians, logistics specialists, and, of course, patients. To make things even more complicated, the delivery chain reflects decisions made at multiple levels, from the global to the national to the district and even the individual, in the form of the providers charged with dispensing care on the ground.

10 Introduction

An Ethnographic Approach How do we begin to address challenges in such a complicated system? I argue that ethnography is a powerful way to probe where and why healthcare delivery fails and succeeds. Healthcare delivery happens where policy, patients, and providers meet. To understand processes of delivery, especially in developing countries, we should explore this intersection, and ethnography provides us with the perfect tools to do that. Because it is context-oriented and builds on small-scale interactions while remaining aware of broad social and cultural processes, the ethnography of healthcare delivery inquires about the agendas, intentions, stakes, and backgrounds that coalesce at that unique meeting point. Using ethnographic evidence, we can observe these processes play out and we can map their effects on people, but we can also develop solutions; ethnography’s split perspective, attending to both the individual and broader contexts, offers a unique frame for thinking creatively about potential answers to the questions raised by delivery failures. Challenges are not seen as purely clinical, economic, or political; instead, each problem is viewed as a complex interplay between multiple factors. Based on my observations and interviews, I share glimpses of what the ART rollout in Malawi has been like for those on the ground: the patients in need of life-­ saving drugs and the healthcare workers charged with providing them. I hope to convince you that, from their stories, we can develop some practical solutions to common pitfalls of healthcare delivery in settings with few resources. One way for anthropologists to approach problems in the delivery of ART in places such as Malawi is to think about what stands in the way of patients with HIV approaching “chronic normalcy.” In high-income nations, HIV infection has become part of everyday life for many patients, as opposed to the death sentence it once represented. However, individuals with few resources to draw upon struggle with negotiating such normalcy. Patients like Mphatso must contend with extreme poverty, stigma, food insecurity, poor or no transportation, unwanted disclosure to those in the community, unstable employment, treatment adherence, and what could be described as the everyday challenges of life in an unsecure and poorly resourced environment (Biehl 2007; Fassin 2007; ­K alofonos 2010; Mattes 2011, 2012, 2014; McGrath et al. 2014; Niehaus 2013; Russell and Seeley 2010; Wilhelm-Solomon 2012). For these patients, the transition to “chronic normalcy” is not a smooth one, if it occurs at all. Patients’ experiences are ruled by “continuous uncertainty” (Moyer and Hardon 2014) or a state of “permanent transition” (Mattes 2014). Ethnographic studies of patients’ experiences help us understand what the rollout of ART in resource-poor settings looks like for patients and how global health policy is translated into the lives of people. This understanding can be helpful in figuring out what can be done better. For example, addressing the discrepancy between the goal of “chronic normalcy” and the reality of “continuous uncertainty” and “permanent transition” allows us to think of ways to provide more stability for patients on ART, while acknowledging that the mere provision of HIV medications is not enough.

Introduction  11

Patients’ experiences have also been explored through ethnographies that focus on defining the rules governing ART in resource-limited settings. This work has investigated various definitions of access to care (Fassin 2007); the role of participation in “therapeutic citizenship,” which recognizes individuals and their rights through their medical conditions and needs (Nguyen 2010); “systems of adherence production,” in which providers enforce constant surveillance on patients to impose external definitions of treatment adherence (Mattes 2011); and the promotion of “treatment literacy” as the underlying factor that explains the success or failure of people as patients (Niehaus 2013). These parameters shape the landscape of treatment, and the experiences of patients operating in it, by determining who is worthy of treatment, the rules of engagement that shape the relationships between patients and providers, and the extent to which patients have to submit their personal lives to constant surveillance and scrutiny, manifested in adherence counseling and “positive living” training sessions. We can develop solutions to delivery challenges by using ethnography to map out the relationships surrounding ART provision, including the relationships between patients and providers, and the nature of policies including and excluding patients from care. For example, rather than requiring patients to submit to a therapeutic regime in which they must subject themselves to a specific treatment environment, how can we create a more inclusive landscape of care that will retain more patients? Ethnographies that explore the context of the ART rollout point us toward not only the important questions, but also potential answers. Exploring the perspective of ART providers is also essential to understanding healthcare delivery challenges, as providers are a no less important component of the delivery equation than patients. Addressing the challenges of healthcare delivery in general, and the rollout of ART in resource-limited settings in particular, requires a deep understanding of everyday realities on the ground, as these are the circumstances in which programs fail or succeed. Current ethnographies of the ART rollout, focusing on providers’ perspectives, address the ethical and practical dilemmas surrounding issues of patient confidentiality that have been part of AIDS care from its first days. Anthropologists have explored these issues not only from the legal perspective of state action (Fombad 2001), but also from the perspective of ART providers struggling with confidentiality in specific cultural contexts (Eaton 2008); the practical challenges of managing confidentiality in suboptimal conditions make privacy near impossible (Whyte et al. 2013). Explorations of issues of confidentiality are part of a broader conversation about patient-provider relationships and the ways in which they shape landscapes of care (Milligan and Wiles 2010), both symbolically and practically (Nguyen 2010; Sullivan 2011, 2012; Whyte et al. 2013). By understanding these landscapes of care, we can address some of the challenges of delivery. For example, the fear of HIV status disclosure is a major deterrent for patients. Understanding the conditions under which ART is provided, and the associated risks to patients’ privacy that result from these conditions, is important in finding ways to create safer care environments that are more welcoming to patients and are more manageable to providers.

12 Introduction

Finally, anthropologists have investigated the ways that providers experience the relationships between local health systems and transnational actors (Beckmann et al. 2014; Nguyen 2010; Sullivan 2011). For example, the global health community is increasingly reliant on community health workers to meet the needs of the growing HIV/AIDS patient population, but all too often these providers go hungry and unpaid (Closser and Jooma 2013; Maes 2012; Maes and Kalofonos 2013). This failure illustrates the breadth of successful healthcare delivery—it not only puts medicines in the hands of the sick, but it also supports and empowers healthcare workers to thrive in their jobs by creating appropriate work environments. A healthcare delivery chain that keeps its workers satisfied and enthusiastic is a successful one in both ethical and practical terms. In the case of community health workers, exploration of this new underclass of health providers is crucial for understanding the consequences of global health programs whose sustainability relies on unpaid labor. Identifying unfair labor practices is helpful in developing truly sustainable solutions for improving the delivery of services, solutions that account for the health and welfare of both patients and providers. Building on these ethnographic studies, this book seeks to move a step forward by providing an account of the process of the ART rollout as a whole. Many current ethnographic accounts focus on a specific policy, an implementation attempt, or a certain level of analysis. These ethnographies provide brilliant eye-opening analyses of various aspects of the global ART rollout, but their multifocal perspectives on different countries or levels of analysis have left the field with a somewhat fragmented picture of the process overall. Although I focus here on one country, Malawi, I employ its experience as a case study for learning more about the rollout of ART in resource-limited settings generally, probing it to explore multiple angles of the rollout process and subjecting it to various levels of analysis. In this single country’s experience, we can see how global policies are translated into national- and district-level practices, how landscapes of care are shaped and transformed by these policies and practices, and what impact these policies and practices have on the everyday lives of people. The stories of the patients and providers that I share reveal how the broad strokes of policy decisions made in World Health Organization (WHO) boardrooms in Geneva interact with the nitty-gritty details of practice to impact individual patients and providers in rural Malawi, pointing to possible areas of intervention. Indeed, this analysis of the delivery system as a whole provides an opportunity to think of alternatives. With the goal of “chronic normalcy” in mind, this case study offers us an opportunity to understand a whole chain of events and the moments when things go awry.

The ART Rollout in Malawi: A Case Study of Healthcare Delivery, from Policy to Practice There are plenty of books about HIV in sub-Saharan Africa. Why write another? My answer is twofold. First, in 2015, the WHO recommended extending

Introduction  13

treatment to all diagnosed with HIV. These guidelines, issued in the spirit of “test and treat” (WHO 2015a), were greeted with approval from around the world, but they are now challenging healthcare systems worldwide. In many regions, the new inclusion criteria will double the size of the patient population. In healthcare systems already burdened by limited resources, these new recommendations will require tremendous effort—effort that could benefit from the experience of countries such as Malawi. Second, in addition to approaching this topic in a unique way that yields new insights into this particular subject, as described above, this book also uses the ART rollout in Malawi to illustrate some universal problems in healthcare delivery. The lessons that emerge from the single rural HIV clinic that I got to know so well, the reasons behind the ART rollout’s successes and failures, stretch well beyond Malawi’s borders. The delivery failures present in this system are essentially the same delivery failures that plague other locations and other diseases. They are failures of what Paul Farmer has deemed “staff, stuff, and systems” (Farmer 2014). Consider what happened in the sunset of 2013, when a small child contracted the Ebola virus in Guinea. For months, the virus moved from village to village, infecting people far from roads, hospitals, and international surveillance. The outbreak did not appear in the international news until March of 2014, when a desperate Médecins sans Frontières, battling the epidemic alongside beleaguered local health systems in virtual isolation, sounded the alarm about the impending threat. At this point, the WHO reported 112 confirmed and suspected cases and 70 deaths due to Ebola (WHO 2014a). Although the Centers for Disease Control and Prevention (CDC) sent a small team to assist, the outbreak was not taken seriously until World Bank President Jim Y. Kim wired billions of dollars to the affected countries of Liberia, Sierra Leone, and Guinea in the August of that year. Two weeks later, the WHO officially acknowledged the devastation of the Ebola epidemic, announcing, “The Ebola epidemic ravaging parts of West Africa is the most severe acute public health emergency seen in modern times. Never before in recorded history has a biosafety level four pathogen infected so many people so quickly, over such a broad geographical area, for so long” (WHO 2014b). At the time of this writing, the outbreak appears to have been stemmed, but the infection left nearly 30,000 people stricken and killed over 10,000 (CDC 2015). It is widely agreed that Ebola’s rapid spread in these poverty-stricken, post-conflict settings reflects not only the international community’s lethargy or, as Joanne Liu, President of Médecins sans Frontières put it, “a coalition of inaction” (Médecins sans Frontières 2014), but also a failure of local health systems. Decades of disinvestment in the public sector as a result of neoliberal aid policies, years of focusing on disease-specific vertical programs while neglecting to develop strong horizontal health systems with effective primary health and surveillance capabilities, and a massive ongoing and unresolved shortage of healthcare workers provided the fertile soil in which the Ebola virus planted its seed. When Ebola broke in West Africa, no surveillance system was in place to

14 Introduction

warn against it, health facilities were ill equipped to treat the patients presenting at their gates, and effective contact tracing was all but impossible. To make matters worse, many local healthcare workers, lacking basic protective equipment and forced to work around the clock as a result of perennial short-staffing and the state of emergency, contracted the virus themselves and died, devastating their families and friends, as well as the already precarious healthcare systems in which they worked. From a healthcare delivery perspective, the West African Ebola outbreak was not an isolated occurrence, but a result of international policy decisions that prioritized funding for vertical programs and left innovation in health infrastructure and treatment in the hands of market forces that were, until very recently, uninterested in emerging infectious diseases such as Ebola (Hooker et al. 2014). Although the AIDS epidemic is the target of one of the vertical programs popular with donors, the response to it, as to the Ebola outbreak, has been hampered by problems of staff, stuff, and systems. And, the scope of these problems reaches far beyond AIDS and Ebola. Our failure to eradicate polio, to overcome malnutrition, to reduce maternal and child deaths, and to provide strong primary healthcare services to people living in the poor areas of the world, when seemingly simple solutions already exist, are all problems related to healthcare delivery. Although solving health problems necessitates technological and pharmaceutical advances, we will always have to find ways to overcome the implementation gap and bring innovations to the people who need them. Thus, although every public health problem is “unhappy in its own way,” to borrow from Tolstoy, many of the lessons emerging from Malawi are widely applicable elsewhere—even, perhaps, to seemingly insoluble problems in high-income nations. So, I invite you to join me on a journey through the landscape of the ARV rollout in Malawi. This book begins at the policy level: the view from 30,000 ft. With each chapter, we will move down the chain—from the global to the national to the district—until we finally reach the outreach practice level: the view from the ground. Individual stories will demonstrate the challenges inherent in delivering healthcare in resource-limited settings; we will also explore the broader context in which these stories take place to gain insight into the factors underlying these challenges at the intersection of policy, patients, and providers. In the last chapter, I pull together the evidence—from policy all the way down to practice—to ask how we can do better. I offer some practical suggestions for how we can improve healthcare delivery to better realize Malawi’s ambitious dream—and to better realize the other audacious global health goals that have been springing up in recent decades, such as measles and polio eradication and the ongoing fight against malnutrition and maternal and child deaths. I argue that with a better understanding of how healthcare delivery succeeds and fails, we can do a better job at delivering the “glasses of water” that not only save lives, but also deliver a feeling of normalcy to millions of people like Mphatso around the world.

Introduction  15

Note 1 Panadol is one of the most common paracetamol-based painkillers in southern ­A frica. Often available in tablets at private pharmacies and kiosks, Panadol is employed to treat many aches and pains, and is often used as a generic term for all painkillers.

References Beckmann, N., A. Gusman, and C. Shroff. 2014. Strings Attached: AIDS and the Rise of Transnational Connections in Africa. Oxford, UK: Oxford University Press. Biehl, J. 2007. Will to Live: AIDS Therapies and the Politics of Survival. Princeton, NJ: Princeton University Press. CDC. 2015. 2014 Ebola Outbreak in West Africa—Case Counts. Atlanta, GA: Centers for Disease Control and Prevention. Closser, S., and R. Jooma. 2013. Why we must provide better support for Pakistan’s ­female frontline health workers. PLoS Medicine 10(10):e1001528. Eaton, D. 2008. Ambivalent Inquiry: Dilemmas of AIDS in the Republic of Congo. In Postcolonial Disorders. M.-J. DelVecchio-Good, S.T. Hyde, S. Pinto, and B.J. Good, eds. Berkeley, CA: University of California Press. Farmer, P. 2014. Dr. Paul Farmer on African Ebola Outbreak: Growing Inequality in Global Healthcare at Root of Crisis. In Democracy Now! J. González and A. Goddman, eds. Interview at an online news website: https://www.democracynow. org/2014/8/22/dr_paul_farmer_on_african_ebola. Fassin, D. 2007. When Bodies Remember: Experiences and Politics of AIDS in South Africa. Berkeley, CA: California University Press. Fombad, C. M. 2001. The crisis of confidentiality in the control of the HIV/AIDS pandemic in Botswana. International Social Science Journal 53(170):643–656. HIV Vaccines and Microbicides Resource Tracking Working Group. 2012. Investing to End the AIDS Epidemic: A New Era for HIV Prevention Research and Development. HIV Vaccines and Microbicides Resource Tracking Working Group. Hooker, L. C., C. Mayes, C. Degeling, G. L. Gilbert, and I. H. Kerridge. 2014. Don’t be scared, be angry: The politics and ethics of ebola. The Medical Journal of Australia 201(6):352–354. Kalofonos, I. A. 2010. “All I eat is ARVs”: The paradox of AIDS treatment interventions in Central Mozambique. Medical Anthropology Quarterly 24(3):363–380. Kim, J. Y., P. Farmer, and M. E. Porter. 2013. Redefining global health-care delivery. The Lancet 382(9897):1060–1069. Kober, K., and W. Van Damme. 2004. Scaling up access to antiretroviral treatment in southern Africa: Who will do the job? The Lancet 364(9428):103–107. Libamba, E., S. D. Makombe, A. D. Harries, E. J. Schouten, J. K. Yu, O. Pasulani, E. Mhango, J. Aberle-Grasse, M. Hochgesang, E. Limbambala, and D. Lungu. 2007. Malawi’s contribution to “3 by 5”: Achievements and challenges. Bulletin of the World Health Organization 85(2):156–160. Maes, K. 2012. Voluntarism or labor exploitation? Harnessing the volunteer spirit to sustain AIDS treatment programs in urban Ethiopia. Human Organization 71(1):54–64. Maes, K., and I. Kalofonos. 2013. Becoming and remaining community health workers: Perspectives from Ethiopia and Mozambique. Social Science & Medicine 87:52–59. Makombe, S. D., A. Jahn, H. Tweya, S. Chuka, J. K. L. Yu, M. Hochgesang, J. Aberle-­ Grasse, O. Pasulani, E. J. Schouten, K. Kamoto, and A. D. Harries. 2007. A national survey of the impact of rapid scale-up of antiretroviral therapy on health-care workers

16 Introduction

in Malawi: Effects on human resources and survival. Bulletin of the World Health Organization 85(11):851–857. Mattes, D. 2011. “We are just supposed to be quiet”: The production of adherence to antiretroviral treatment in urban Tanzania. Medical Anthropology 30(2):158–182. ———. 2012. “I am also a human being!” Antiretroviral treatment in local moral worlds. Anthropology & Medicine 19(1):75–84. ———. 2014. Caught in transition: The struggle to live a “normal” life with HIV in Tanzania. Medical Anthropology 33(4):270–287. McCoy, D., B. McPake, and V. Mwapasa. 2008. The double burden of human resource and HIV crises: A case study of Malawi. Human Resources for Health 6(1):16. McGrath, J. W., M. S. Winchester, D. Kaawa-Mafigiri, E. Walakira, F. Namutiibwa, J. Birungi, G. Ssendegye, A. Nalwoga, E. Kyarikunda, S. Kisakye, N. Ayebazibwe, and C. B. Rwabukwali. 2014. Challenging the paradigm: Anthropological perspectives on HIV as a chronic disease. Medical Anthropology 33(4):303–317. Médecins sans Frontières. 2014. Global bio-disaster response urgently needed in Ebola fight. Médecins sans Frontières. Milligan, C., and J. Wiles. 2010. Landscapes of care. Progress in Human Geography 34(6):736–754. Ministry of Health. 2004. A Joint Programme of Work for a Health Sector-wide ­Approach (SWAp) 2004–2010. Moyer, E., and A. Hardon. 2014. A disease unlike any other? Why HIV remains exceptional in the age of treatment. Medical Anthropology 33(4):263–269. Muula, A., J. Chipeta, S. Siziya, E. Rudatsikira, R. Mataya, and E. Kataika. 2007. ­Human resources requirements for highly active antiretroviral therapy scale-up in Malawi. BMC Health Services Research 7(1):208. National Cancer Institute. 2015. NCI Budget and Appropriations. National Cancer Institute. Nguyen, V.-K. 2010. The Republic of Theraphy: Triage and Sovereignty in West Africa’s Time of AIDS. Durham, NC: Duke University Press. Niehaus, I. 2013. Treatment literacy, therapeutic efficacy, and antiretroviral drugs: Notes from Bushbuckridge, South Africa. Medical Anthropology 33(4):351–366. Palmer, D. 2006. Tackling Malawi’s human resources crisis. Reproductive Health Matters 14(27):27–39. Ravishankar, N., P. Gubbins, R. J. Cooley, K. Leach-Kemon, C. M. Michaud, D. T. Jamison, and C. J. L. Murray. 2009. Financing of global health: tracking development assistance for health from 1990 to 2007. The Lancet 373(9681):2113–2124. Russell, S., and J. Seeley. 2010. The transition to living with HIV as a chronic condition in rural Uganda: Working to create order and control when on antiretroviral therapy. Social Science & Medicine 70(3):375–382. Sullivan, N. 2011. Mediating abundance and scarcity: Implementing an HIV/AIDS-­ targeted project within a government hospital in Tanzania. Medical Anthropology 30(2):202–221. ———. 2012. Enacting spaces of inequality: Placing global/state governance within a Tanzanian hospital. Space and Culture 15(1):57–67. UNAIDS/WHO. 2004. Malawi: Epidemiological Fact Sheets on HIV/AIDS and Sexually Transmitted Infections. UNAIDS and World Health Organization. UNDP. 2004. Human Development Report 2004. United Nations Development Programme.

Introduction  17

Van Damme, W., K. Kober, and G. Kegels. 2008. Scaling-up antiretroviral treatment in Southern African countries with human resource shortage: How will health systems adapt? Social Science & Medicine 66(10):2108–2121. WHO. 2005. Malawi: Summary Country Profile for HIV/AIDS and Treatment Scale-Up. World Health Organization. ———. 2006. Progress in Global Access to HIV Antiretroviral Therapy: A Report on “3 by 5” and beyond, March 2006. Geneva: World Health Organization. ———. 2014a. Ebola Virus Disease in Guinea—Update, 30 March 2014. World Health Organization. ———. 2014b. Experimental Therapies: Growing Interest in the Use of Whole Blood or Plasma from Recovered Ebola Patients (Convalescent Therapies)—Ebola Situation Assessment, 26 September 2014. World Health Organization. ———. 2015a. Guideline on When to Start Antiretroviral Therapy and on Pre-exposure Prophylaxis for HIV. World Health Organization. ———. 2015b. Yaws: Fact Sheet. World Health Organization. Whyte, S. R., M. A. Whyte, and D. Kyaddondo. 2013. Health Workers Entangled: ­Confidentiality and Certification. In Morality, Hope And Grief: Anthropologies of AIDS in Africa. H. Dilger and U. Luig, eds. pp. 80–101. Oxford, UK: Berghahn Books. Wilhelm-Solomon, M. 2012. The priest’s soldiers: HIV therapies, health identities, and forced encampment in northern Uganda. Medical Anthropology 32(3):227–246.

2 Hierarchies of Emergency Global Policy and the ART Rollout in Malawi

Nurse Anna, Dr. Jonathan, and Dr. Pierre were huddled around a desk in the nurses’ room of the HIV clinic, reviewing the new amendments to the guidelines for pediatric HIV care before the first patients arrived. Lit by the morning sun glaring through the big window, the room was unassumingly furnished with a desk, two chairs, and a small cart on which lay a box of sanitary gloves and a bottle of disinfectant. The walls of the room were sparsely covered with posters issued by the Malawian Ministry of Health and the National AIDS Commission explaining ART care or reminding patients to get tested, and a filing cabinet exploding with binders was hidden behind the door marked “ART Nurse.” Outside the clinic, patients were already waiting. They had been gathering since the early hours of the morning, and with opening hour getting close, the buzz of activity penetrated the walls. These were the last few minutes of peace before another hectic day began. Tuesdays were dedicated to pediatric patients, and the staff were hurriedly discussing how to adapt the clinic’s procedures to these new amendments. The changes were meant to support providers caring for children who were HIV positive. They did not represent a shift in treatment procedures but were more a collection of algorithms created by Malawian and American physicians to aid treatment decisions. The benefit of the new algorithms was clear to Nurse Anna, Dr. Jonathan, and Dr. Pierre. With very limited training in pediatric HIV care, and short interaction times with each pediatric patient and their parents, providers at the clinic often experienced difficulties when caring for children, so these new amendments were well received. Unlike many other treatment guideline documents, it seemed like the new amendments would actually resolve some of the confusion surrounding treatment procedures.

Hierarchies of Emergency  19

This small meeting was not just routine preparation for the deluge of patients that would soon swell the waiting room, however; it was also a global gathering of health professionals. Anna was a Malawian nurse trained as an ART provider. She rotated between the HIV clinic and other health services in the district to compensate for shortages in the health workforce. Commanding in her nurses’ uniform, opinionated, and petite, she was one of the “regulars” at the HIV clinic. Even though she often commented about the unreasonable workloads and long hours, she appreciated the opportunity to extend care to people living with HIV. Employed by the Malawian Ministry of Health, Anna was satisfied with her position at the hospital, considering it one of the better assignments a Malawian nurse could ask for. The hospital was situated not too far from the capital, and compared with other district hospitals, it could even be considered well equipped. She was also grateful not to be assigned to a health post in a remote village, where working conditions were minimal and opportunities to escape limited. Notwithstanding the desire to maybe migrate to the UK for work one day, a desire shared by many nurses and one that sometimes came up in conversation, Anna was planning to stay put and continue rotating between the different wards at the hospital. Nurse Anna was passionate about working with children, so she tried to make sure that she would be on the roster every “pediatric Tuesday” at the HIV clinic. Dr. Jonathan was an American pediatrics resident. Posted in Malawi for a year, he was based in the capital and traveled to various districts in the country to assist in establishing their pediatric services. Dr. Jonathan’s work in Malawi was funded by the global health initiative that operated in the US hospital where he was conducting his residency. The global health program offered physicians like Dr. Jonathan the opportunity to join its Malawian branch and considered his time out of the country a part of his training obligations. Every few months, he would travel to the USA, but he always seemed excited to return to Malawi. These hospital-based global health programs seemed to be generating a lot of enthusiasm in American institutions, and he hoped that once his training was complete, he would be able to find a hospital in the USA with a similar program that would allow him to continue his international work. Maybe someday, he would even lead one. But, for now, he did his best to be at the clinic most Tuesdays, to support its providers in pediatric care. Ideally, he said, very soon, the staff in the clinic would not need him anymore. Dr. Pierre was a Congolese surgeon hired by the United Nations (UN) to serve a limited-time contract in the hospital to augment the almost non-existent surgical services in the district, but he also took on medical tasks outside the operating room. Trained in the Democratic Republic (Continued)

20  Hierarchies of Emergency

of Congo (DRC) and in France, Dr. Pierre was in no rush to return to his war-ravaged home country, and he often took on international UN contracts to serve in other countries in Africa. In conversations with Dr. Pierre, he often mentioned his admiration for the Malawian ART rollout. “Ambitious,” “brave,” and “challenging” were the words he used to describe the process he was now a part of. In French-infused English, Dr. Pierre loved talking about the differences between Malawi and the DRC, two African nations so similar and yet, so different. He often compared the ART rollout process he witnessed in Malawi with HIV care in other African countries in which he had worked. Trying to assess the situation in Malawi, he would recall how treatment policies in different countries had adapted global HIV treatment policies to local conditions. Hospital staff gossiped about the long hours Dr. Pierre spent in the operating theater and how the surgical teams struggled to keep up with his pace. But, when asked about his work, Dr. Pierre was excited about a study he was conducting at the hospital to assess patients’ reliance on traditional medicine, and opportunities to combine traditional healing and biomedical HIV care. Dr. Pierre’s training and international experience were valued at the HIV clinic, and the staff were thrilled when he would sometimes join them, especially when difficult cases presented at the clinic, and, of course, on “pediatric Tuesday.” The three had been working together for a few months, and their little group was friendly and supportive. Although Anna was probably going to spend the rest of her career in Malawi, whereas Dr. Jonathan and Dr. Pierre were merely passersby who would be elsewhere in a year’s time, they were all committed to the work of the clinic. They were also committed to each other. Anna helped Dr. Pierre find his way in this rural district, and both enthusiastically supported the attempts of Dr. Jonathan, the American resident, to master the Chichewa language—or, as he called it jokingly, “my pediatric Chichewa,” as it was of no use for real adult conversation. The hope was that, by working together, when the time came for Dr. Jonathan to leave, his help and expertise would become less needed and Anna could take over. Thus, on this Tuesday morning, the three healthcare workers reviewed the amendments to the guidelines for pediatric ART dosage and then started repackaging pills to expedite later clinical interactions with parents and children. A routine occurrence at the clinic, this moment was a snapshot of global health as it is practiced today. Three health professionals from three different countries, funded by different institutions and agencies, meeting at a rural clinic in Africa to discuss new guidelines adapted by the national Ministry of Health from the latest recommendations by the World Health Organization in a fight against a disease that had become the number one priority in health worldwide.

Hierarchies of Emergency  21

Just as global health policies created thousands of miles away from Malawi brought Nurse Anna, Dr. Jonathan, and Dr. Pierre to the same HIV clinic, they are now determining how AIDS care is provided throughout that country and others. This chapter explores how such policies are a double-edged sword: On the one hand, they have prioritized AIDS care, allowing Malawi’s ART rollout to occur and saving countless lives. On the other hand, these policies—often created by distant policymakers and thus, sometimes unsynchronized with conditions on the ground—constrain the shape that AIDS care can take, with very real consequences for patients and providers. The stories of the end users these policies seek to help illustrate the far-reaching effects of the top-down policies prioritizing AIDS as a health concern. But, these policies also denote the ­t remendous changes that have shaped how we address the health of the poor.

Establishing Hierarchies of Emergency: How AIDS Came to Be a Global Health Priority One brisk evening in the spring of 2009, a TV crew parked on the sidewalk across from the Harvard medical campus where I worked. Earlier that day, nine dental students had been diagnosed with what were suspected to be mild cases of H1N1 influenza. Having rapidly spread from Asia to distant cities and towns, including Boston, the infection had inspired widespread fear in the USA. At Harvard, classes were canceled, emails announced a semi-shutdown of the ­medical school, and all personnel working in the medical area were given special emergency instructions. The Boston Globe was also on the case with first-page headlines, photo essays from around the world, and advice for concerned readers. And thus, we embarked on what felt like a state of emergency. Some of these initial cases were indeed identified as H1N1, and the affiliated hospitals later implemented a vaccination campaign for all their employees. The university, much like other institutions in the city, launched a flu-control campaign and made hand sanitizers available in every office and washroom. A few months later, the excitement about H1N1 had puttered away, however, and by the time I fell sick during what was called the “second wave” in the fall of 2009, no one at the university’s health services office seemed to get excited. In fact, I could not even get a doctor’s appointment and was ordered over the phone to stay in bed and keep hydrated. Clearly, the H1N1 outbreak of 2009 was considered important, both by the city of Boston and by the world. In the April of 2009, the Director-General of the WHO declared the H1N1 outbreak a Public Health Emergency of International Concern, and the US Government determined that a nationwide public health emergency was present (CDC 2010). The US government alone bought 229 million doses of H1N1 vaccine, of which at least roughly 71 million were later discarded, unused (Drummond 2010). By the time the pandemic had fizzled out, the Centers for Disease Control and Prevention (CDC) estimated that approximately 12,500 deaths had occurred in the USA as a result of the H1N1 strain (CDC 2011; Shrestha et al. 2011). This is certainly a substantial toll, but

22  Hierarchies of Emergency

in any given year, flu-related deaths in the USA number anywhere from 3000 to 49,000 (CDC 2015). In the aftermath of the billions spent on the response to H1N1 (CIDRAP 2011), much of it too late to avert new cases, the WHO prepared an independent review investigating, in part, whether it had overreacted (Fineberg 2014; WHO 2011). These events raise the question: What makes some health emergencies more important than others? The specter of H1N1 was enough to spur the global health machinery into action, but diseases known to claim many more lives per year receive much less attention. AIDS, the subject of this book, was not always at the top of the disease priority list. In sub-Saharan Africa, the AIDS crisis was already beginning to unfold in the late 1980s, and by the following decade, it was engulfing millions of people, with over 2 million new infections annually (UNAIDS 2010), devastating families and communities in eastern and southern Africa. Even so, antiretroviral treatment for AIDS, introduced in the late 1990s, was initially only available to patients in affluent countries. Indeed, the 1990s were characterized by an extremely hostile anti-aid environment, led by the US government. Policymakers believed that providing expensive treatment in low-resource settings was impossible because it required complex infrastructures that did not exist in most developing countries, and in their eyes, it was definitely not cost-effective (Irwin et al. 2003). Thus, the consensus was that prevention should be the focus of AIDS work in developing countries. The American government’s position regarding the impossibility of AIDS treatment in poor countries was articulated in a statement made by a high-ranking US government official claiming that Africans were unable to deal with such complex medical treatment: [Many Africans] don’t know what Western time is. You have to take these [AIDS] drugs a certain number of hours each day, or they don’t work. Many people in Africa have never seen a clock or a watch their entire lives. And if you say, one o’clock in the afternoon, they do not know what you are talking about. They known morning, they know noon, they know evening, they know the darkness as night. (Donnelly 2001) However, the course toward the provision of HIV treatment worldwide was already being charted by two movements. The first was the AIDS Coalition to Unleash Power, more commonly known as ACT UP, in the USA (1987), which was the first to tie AIDS with gay rights and the right to health. The second movement was the Treatment Action Campaign, or TAC, in South Africa (1998), which promoted access to HIV treatment for all as a right, while using direct action and protest tactics established during the fight against apartheid. The historical post-Apartheid context, as well as the profile of AIDS in South Africa, shaped the rights language that was at the heart of TAC’s action. Both ACT UP and TAC represent the conversion of broader social and political agendas (gay

Hierarchies of Emergency  23

rights in the case of ACT UP, and the anti-Apartheid movement in the case of TAC) into the struggle to secure HIV treatment, and therefore, they should be understood in these social and political contexts. However, they both introduced the discourse of AIDS treatment for all as a social justice issue. In the late 1990s and early 2000s, the activists of ACT UP and TAC were involved in advocating for HIV treatment in poor countries within this context. This global coalition included activists, NGOs, and politicians from both the countries, most affected, and more affluent regions of the world. Against this background, AIDS activists, physicians, nurses, and politicians articulated arguments for and against providing treatment in developing countries, navigating the tension between the focus on prevention and the focus on treatment (Bell et al. 2004; Binswanger 2003; Creese et al. 2002; Farmer et al. 2001; Koenig et al. 2004; Marseille et al. 2002; Moatti et al. 2003; Nattrass 2006; Nattrass and Geffen 2005; Steinberg 2008). After advocates shamed politicians and pharmaceutical companies in protests, public relations campaigns, and legal actions and revealed that the international community was withholding treatment from some of the poorest people most afflicted by the HIV/AIDS epidemic, ART was finally introduced to sub-Saharan Africa in the early 2000s. This was nearly two decades after the epidemic took hold there, stifling the growth and health of the people and their communities. Eventually, grants were provided to countries such as Malawi to establish mechanisms of treatment. Although limited in scope and resources, these grants kick-started a process that would have been unimaginable even a few years earlier.1 The American President’s Emergency Plan for AIDS Relief (PEPFAR), joined by the Bill and Melinda Gates Foundation; the Global Fund to Fight AIDS, TB, and Malaria (GFATM); the World Bank; and the IMF have largely been responsible for allocating aid to ART ­programs in the developing world (Messac and Prabhu 2013). The catalyst for many of the changes in policy and donor allocation was the WHO’s announcement in 2003 of the 3 by 5 Initiative, which set the goal of providing 3 million people in low- and middle-income countries with HIV treatment by 2005 (Messac and Prabhu 2013). The announcement of the initiative followed a statement made in September 2003 by the then Director-General of the WHO, Dr. Jong-wook Lee; the Executive Director of UNAIDS, Dr. Peter Piot; and the Executive Director of the GFATM, Dr. Richard Feachem, declaring the lack of access to AIDS treatment a global health emergency. The 3 by 5 Initiative was the WHO’s coordinated response to this emergency. Its ambitious goals were to increase the number of people on ART in low- and middle-income countries, strengthen health systems, and intensify prevention efforts linked to HIV care (Battistella Nemes et al. 2006). These goals were to be achieved by supporting countries in establishing new treatment programs and scaling up existing ones, simplifying and standardizing treatment regimens and guidelines, encouraging donor support and partnerships in building funding mechanisms for treatment programs, and supporting in-country training and capacity-building activities (Battistella Nemes et al. 2006; WHO 2003).

24  Hierarchies of Emergency

Although the 3 by 5 Initiative failed to reach its original goals, it did bring about a substantial increase in the number of people on ART in low- and middle-­income countries. At the launch of the program in 2003, only 400,000 people in low- and middle-income countries were receiving treatment. By the end of 2005, 1.3 million people in those target regions were on ART (Battistella Nemes et al. 2006). No less important, the 3 by 5 Initiative has forever changed the conversation about HIV treatment by recognizing the right of people in poor countries to access care. After the 3 by 5 Initiative, the question was no longer “Should treatment be provided?” but rather “How should we provide treatment?” Not only did AIDS become an international priority, which seemed unlikely only a decade earlier, but it has also generated innovative responses and new alliances between activists, international agencies, and private philanthropists. By breaking down boundaries between public health and clinical medicine, AIDS was a major player in the framing of a new discipline. As stated by Brandt (2013:2149), “…the HIV epidemic and the responses it generated have been crucial forces in ‘inventing’ the new ‘global health.’” Furthermore, AIDS helped place global health at the center of the international development agenda. No longer understood as a private matter, and largely based on the understanding that health is an important factor in economic growth, health became one of the most discussed topics in the fields of economic development and international aid. This development, of course, served as a precursor to controversy over the right strategies to achieve economic growth (Easterly 2007; Sachs 2004). Global health and AIDS have become interwoven in every conversation about development and poverty eradication, especially where the African continent is concerned. The growing global attention to the developing world is not limited to policy wonks; it extends to the leaders of nations, such as President Bill Clinton, and pop stars, such as Bono. In a sort of positive feedback loop, this wave of attention has brought with it a surge in development interventions from the international community, including organizations such as The Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM), the President’s Emergency Plan for AIDS Relief (PEPFAR), and a growing number of private and religious foundations and organizations in Africa and around the world. Indeed, global development assistance for health (DAH)2 grew from $5.6 billion in 1990 to $21.8 billion in 2007. Sharp increases in DAH after 2002 reflected donor funds channeled from public funding (mostly from the USA), philanthropic donations, and in-kind corporate contributions. A breakdown of the available 2007 donor data shows that of the $14.5 billion DAH, $5.1 billion was dedicated to HIV/AIDS alone, whereas $0.7 billion was dedicated to tuberculosis, $0.8 billion to malaria, and only $0.9 billion for health systems support (Ravishankar et al. 2009). However, this uptake of funding for global health in general and for HIV/AIDS in particular was not unlimited. The global financial crisis of 2008–2009 led to a slowdown in the growth of DAH and a scale-back in funding on the part of some funding agencies, among them GFATM (Chatterjee 2009; Dieleman et al.

Hierarchies of Emergency  25

2014; Leach-Kemon et al. 2012; Zarocostas 2012). Of note, the sheer amount of aid has placed new demands on underdeveloped health delivery systems in the low-income countries most affected by HIV/AIDS.

From Geneva to Malawi: The Events That Made the ART Rollout Possible Despite the weakness of its health system, Malawi responded to these shifts in global health policy with a number of new health policies of its own. These policies were aimed at leveraging this new international interest and political will, and the funding opportunities that came with it, to address both the AIDS crisis in the country and the overall weakness of its health system (Libamba et al. 2007; NAC 2003). Led with a public health approach, as part of a broader Essential Health Package, and spearheaded by the public sector, with the support of the international donor community, Malawi was a pioneer in providing universal access to ART (Bemelmans et al. 2010; Libamba et al. 2007; McCoy et al. 2008a; Muula et al. 2007; Palmer 2006; Rasschaert et al. 2011). The public health approach to the scale-up of services occurred in tandem with the development of the 3 by 5 Initiative and thus was based on the same strategies: simplified clinical decision-making processes, standardized treatment protocols, and the integration of non-physician clinicians into the treatment process. This approach acknowledged limited access to laboratory support and incorporated other mechanisms to enable clinicians to provide care (such as clinical staging). Monitoring and evaluation were centralized to streamline and improve data collection (Lowrance et al. 2008). ART delivery procedures led by the Ministry of Health were streamlined and unified across the private and public sectors, according to the new scale-up policy, and all were based on the same principle: Treatment was free of charge in all public facilities, and fees were limited in private ones (Makombe et al. 2007; Muula et al. 2007). Cadres of clinical officers and physicians provided initial assessment, treatment initiation, and follow-up prescribing. Nurses, in turn, were in charge of follow-up assessments, refilling medications, and adherence counseling (Muula et al. 2007). As was mentioned earlier in this book, the Malawian healthcare system at this time suffered from an overwhelming shortage in the health workforce. Several factors were responsible. First, a shortage of resources limited the government’s ability to invest in the training of new healthcare professionals. Second, high rates of HIV morbidity and mortality within the health workforce, as well as shortages in the supplies necessary to maintain universal medical precautions, contributed to loss of staff. Third, the public sector lost trained professionals to the private and NGO sectors, as well as to international migration, due to the devaluation of salaries and poor working conditions (McCoy et al. 2008b). As a labor-intensive practice, ART required a reassessment and realignment of the available health workforce in order to scale up services. Solutions to these

26  Hierarchies of Emergency

challenges had to be based on both top-down and bottom-up approaches to be effective (Lancet 2008). This process resulted in a sector-wide Emergency Human Resource Program (EHRP) focused on training and retaining health professionals (Palmer 2006; WHO 2009). The EHRP included incentives for recruiting and retaining health professionals, made use of international volunteering physicians, and provided support for human resources planning within the Ministry of Health, as well as establishing human resources monitoring and evaluation mechanisms (McCoy et al. 2008b). Following its implementation, the EHRP generated an increase in the health workforce, with a major impact on the numbers of community health workers introduced into the health system. The new training programs resulted in a 12% increase in new medical doctors and a 72% increase in newly trained nurses, and it more than doubled the number of community health workers. As hoped, the increase in workforce contributed to an overall increase in the delivery of primary care services and their utilization, as well as a decrease in the late diagnosis of HIV and late initiation into ART programs (Rasschaert et al. 2011). The Essential Health Package and the EHRP required a massive transfusion of funding and a commitment by the Malawian government, as well as by various donors, to support the scale-up of ART and the necessary expansion of the health workforce. The cost of the EHRP was US$272 million, with funding allocated by the Malawian government, GFATM, and the UK Department for International Development (DFID) (Palmer 2006). With its strong emphasis on government leadership and broad accessibility, the Malawian scale-up was indeed aligned with the goals and strategies of the 3 by 5 Initiative (Libamba et al. 2007). The ART scale-up in Malawi represented, in many ways, a combination of bottom-up and top-down processes; the Malawian government was a full participant in the process and did not just adopt guidelines handed down by international organizations; moreover, local health professionals, policy makers, and other stakeholders were the leading forces in the design of the Malawian response. This process created an opportunity to change health policy and bring together various local and international stakeholders and funders. It also provided an opportunity to create a vertical program that could provide a substantial contribution to the health system as a whole. It is difficult to overstate the effects of the ART rollout on Malawians living with HIV/AIDS. Take Agnes, a 31-year-old woman living in a village in the central district of Malawi. She was married and had had two children, but both of them had died, the oldest when he was 2 years old and the younger one immediately after birth. After being hospitalized in Lilongwe, Agnes was diagnosed with HIV, but, reluctant to believe the results, she did not act on them. Instead, she went back to her life in the village, with the knowledge of her positive diagnosis eating away at her. By the time she decided to seek help from a Voluntary Counseling and Testing (VCT) center near her village, she was on death’s doorstep: dizzy and unable to walk, much less work. Desperate to recover, she began ART at the clinic. With 3 months of antiretrovirals and nutritional support

Hierarchies of Emergency  27

in the form of Plumpy’nut, a peanut-based food supplement, she was a woman transformed. She no longer needed the help of a cane to walk and was back to farming with her family and cooking. After several months of treatment, Agnes was also strong enough to reflect on her life and plan for the future. For many months after her diagnosis, she explained, she had been unable to imagine what her life would be like. Cheerful and healthy looking, Agnes spoke softly about the children she lost. Feeling stronger again, she said that she would like to try and have more children now that she was on treatment. The thought of children seemed to light up her eyes. But, as much as she wanted more children, Agnes said, like many other women I have interviewed, that she would receive anything coming from God. Agnes is a rural, HIV-positive woman in a low-income country who until very recently was unable to imagine a future. It is people like her that the architects of the 3 by 5 Initiative and the Malawian policymakers had in mind when they designed and executed the ART scale-up. Commenting on her life after ART, Agnes told me, “I am a person.” “You are a person? Who were you before?” I asked. “I was death,” she answered laughing. “I was already finished because when the wind was blowing I could not take balance.”

ART in Malawi and Beyond: An Imperfect Health Delivery System By any reckoning, the ART rollout in sub-Saharan Africa is a tremendous achievement. In Malawi, as in many other low-income countries, it has been life changing for hundreds of thousands of people. However, incredible amounts of aid, linked to ambitious goals, have magnified weaknesses in already stressed health delivery systems. The public health infrastructure in a country can be thought of like the complicated network of underground pipes that carry water to our homes; when it works, this system is largely invisible, and we receive water on demand. However, if the system falls into disrepair, large amounts of water leak out before it can reach our faucets, resulting in a great deal of waste, and water fails to reach us, the end users. Similarly, without a functioning healthcare delivery system, aid money enters a healthcare system, but much of it leaks out before being translated into essential goods and services. In Malawi, as in many other countries, a great deal of funding for a single disease has been dropped into a setting with little healthcare infrastructure, making it difficult to achieve healthcare delivery goals. For example, although ART clinics have been established, no money exists for transportation to those clinics; unable to afford a monthly bicycle or cart ride to the clinic, Agnes must leave her house at 3 a.m. to arrive at the clinic by 6 a.m. and be assured a “good spot in line.” A 3-hour walk starting in the middle of the night is a lot to ask of patients who may be so ill that they are unable to walk at all. As ART providers have said over and over again during interviews: We have the drugs, but the patients don’t have the money for the bus to come here, and we don’t have money for fuel to go to them.

28  Hierarchies of Emergency

Similarly, if a patient makes it to the clinic, they can gain access to antiretroviral drugs (assuming there are no stock-outs), but little else. “I treat AIDS, I can’t help with anything else,” an ART nurse once lamented to me. Healthcare providers and patients are well aware that recovery entails much more than antiretrovirals. For example, food insecurity is an overwhelming problem in rural Malawi, and has been throughout Malawian history (Mandala 2005; Vaughan 1987). Malnutrition impedes the recovery process, as well as stands between a patient and their health of its own accord. As early as the 1990s, it was evident that AIDS was increasing household food insecurity in Malawi (Mtika 2001), and later studies have shown that food insecurity is also a major barrier in accessing treatment and adhering to it (Munthali 2002; Young et al. 2014). Yet, when ART clinics can provide food aid at all, it tends to be short term and is only directed to those in direst need; Agnes received Plumpy’nut for 3 months, but when she began gaining weight, the staff told her, “We have done enough for you, you will be doing it on your own now.” Similarly, a patient might leave a clinic with thousands of dollars worth of HIV drugs without being able to gain access to treatment for the opportunistic infections that are very common in HIV-positive people—from oral thrush and herpes to pneumonia and Kaposi’s sarcoma. These secondary infections slow recovery and can even take lives. The food to address malnutrition and many of the medications needed to cure opportunistic infections are inexpensive relative to antiretrovirals, but they have largely failed to capture the imagination of policymakers and donors, who do not see them as an integral part of HIV care. ART is delivered to some of the poorest communities in the world, but, in some places, it is the only health service provided. In essence, the global hierarchies of emergency that emphasize AIDS while deemphasizing other conditions have not only placed HIV/AIDS patients in a social and medical echelon above patients with other health conditions (had Agnes had cancer instead of AIDS, she would have been out of luck), but it has also neglected to provide HIV/AIDS patients with services critical to their care. In addition, critics charge that the push for ART access has diverted resources from other pressing health needs in settings plagued by both shortages of healthcare “staff” and “stuff.” Faced with both limited material resources and an inadequate workforce, providing HIV care in designated clinics requires the diversion of precious resources from already underfunded and understaffed services. The most important resource that must be “shared” is the workforce, and health providers find themselves endlessly “floating” between already understaffed wards and the HIV clinics, sometimes pulling double and triple shifts and skipping their days off. Furthermore, the special resources channeled to ART clinics create tension between the clinic’s needs and those of other services operating with even fewer resources. In Malawi, unlike in other cases reported in the region, these tensions are not primarily centered on better pay at the ART clinics (Sullivan 2011), but rather focus on the attention given the ART clinic by the hospital’s administration, the Ministry of Health, and the international community.

Hierarchies of Emergency  29

These tensions between the HIV clinic and other wards at the hospital are critical to the clinic’s ability to provide care. Unlike ART services that operate independently through the support of international NGOs, making them de facto enclaves of higher-end medical services (Sullivan 2011), HIV clinics in public health facilities in Malawi are an integral part of hospitals and rely heavily on other services at the hospital, from the pharmacy to the other wards. When the pharmacy is understocked, or the male ward is overcrowded, the staff at the ART clinic must find short-term solutions for their patients. At the same time, the ART clinic does receive more attention as the newest service at the hospital, attention that is not always appreciated by other services, which struggle under the burden of sharing their resources. Thus, the fragmentation of services caused by vertical programming is not theoretical, but it actually affects the delivery of services. These problems highlight a persistent problem in public health: the tension between vertical health programs and horizontal health programs. In 1965, ­Gonzalez outlined both strategies: The first [approach], generally known as the ‘horizontal approach,’ seeks to tackle the over-all health problems in a wide front and on a long term basis through the creation of a system of permanent institutions…[whereas a] ‘vertical approach’ calls for solutions of a given health problem by means of single-purpose machinery. (Gonzalez 1965: 9) Tensions between vertical and horizontal approaches and single-disease ­versus ­primary healthcare are rooted in global health policy and practice. ­Horizontal primary healthcare was prioritized by the signing of the Alma-Ata Declaration of Primary Health Care in 1978, with its “Health for all by 2000” goal. This strategy was based on a comprehensive approach and argued for broad community participation as well as multidimensional and intersectorial involvement (Brown et al. 2006). Nevertheless, this horizontal perspective was replaced by ­selective models that suggested narrowing the broad definitions of primary healthcare and focusing on vertical, localized interventions such as providing selected vaccinations, malaria treatment, and oral rehydration therapies. Less ambitious in their goals, albeit more cost-effective according to their supporters, vertical health interventions were designed to circumvent what was seen as Alma-­ Ata’s unattainable scope and high costs and contribute to improvements in the health of poor populations worldwide (Walsh and Warren 1979). Although Gonzalez maintained that the two strategies should not be mutually exclusive, as they serve different goals, years of international health work with limited funding have resulted in heated arguments over the strengths and weaknesses of each strategy and accusations of inefficiency and resource drainage. The most common accusation made against vertical programs centers on their single-­purpose resource allocation, which drains resources and workforce

30  Hierarchies of Emergency

capacity from other health programs by duplicating efforts (De Maeseneer et al. 2008). At the same time, proponents of vertical programing point not only to the potential efficacy of single-purpose action, but also to potential spillover effects from vertical programs that should benefit the health system as a whole. The legacy of selective models of care, or vertical programming, stands at the heart of some of the largest global health initiatives, such as malaria and polio eradication. And, although many of these programs do see health systems improvements as one of their goals, there is evidence to suggest that, in contradiction to the rhetoric sometimes dedicated to the support of health systems expansion, funds transferred to general systems improvement are only a small fraction of overall donor assistance support, while the focus of the support, both practically and financially, remains on single-disease programming (Ravishankar et al. 2009). Although much of the new global health funding focuses on vertical programming, especially where AIDS is concerned, after decades of experience, policymakers are starting to draw lessons from the limitations of previous vertical programs. In some places, vertical programs have not pulled resources from other programs simply because no other functioning programs exist. In other places, however, it has become clear that the large sums of donor money invested in vertical health programs have not been used effectively due to infrastructure and human resource constraints. Such challenges are evident in the polio eradication efforts. Three decades into the global eradication campaign, the impact of the program on local healthcare systems still varies between countries (Closser et al. 2014). In some regions of Pakistan, for example, polio eradication activities are often the only health service provided regularly, and in both Pakistan and Nigeria, health workers and community members express frustration with the single focus of these programs (Closser et al. 2014, 2016). These experiences in global health programming have drummed up support for programs that bridge the vertical-horizontal divide. Julio Frenk (2010:2) describes such programs, in which “explicit intervention priorities are used to drive improvements of health systems,” as diagonal. The diagonal approach is in many ways similar to the integration of vertical-­ horizontal programming advocated by Gonzalez in the mid-1960s (1965). However, it represents the current stage of evolution of the global health system (Ooms et al. 2008) in the ways it recognizes current challenges, such as the AIDS epidemic, as well as the multiple institutional actors involved in health programming and funding. It also provides an opportunity to see how HIV/AIDS funding can be leveraged to strengthen the healthcare delivery system and the services provided to patients. One example of the use of AIDS funding to create a more diagonal system is the Academic Model for Prevention and Treatment of HIV/ AIDS (AMPATH) operating in Kenya. A collaboration between Moi University in Kenya and Indiana University in the USA, AMPATH has developed a comprehensive model of clinical AIDS care integrating nutritional support, welfare services, and primary health services (Mamlin et al. 2009).3 Since its inception,

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AMPATH has not only broadened its network of services to people with HIV and their families, but it has also introduced agricultural components, in the form of food-producing farms, and technological innovations, such as electronic medical record systems that enhance the abilities of health facilities to decentralize and synchronize care. The scale-up of ART in Malawi represents the best and the worst of vertical programming. The focus on a single disease has allowed the Malawian government to harness international attention and political will to strengthen an almost non-existent service to its citizens. By channeling local and international funding sources into AIDS care, and establishing strategic partnerships, the Malawian Ministry of Health was able to scale up treatment for a disease that was a major cause of morbidity and mortality. At the same time, the single-­ disease focus has left many other health needs by the side of the road, even those closely related to AIDS care. In a country lacking a stable and systematic health infrastructure, the investment in AIDS means a generally weak and under-­ resourced health system may remain that way, even with the massive infusion of health-­related funding. Indeed, because of its poor health system and reliance on donor aid, Malawi has long been the target of vertical programs, from vaccinations and under-five clinics to antenatal care, malaria eradication, and now AIDS. One of the common features of every health facility in the country is the plethora of infrastructure for vertical programs. A stroll through the grounds of the district hospital where Agnes is a patient and Nurse Anna, Dr. Pierre, and Dr. Jonathan practice reveals an antenatal clinic focusing solely on the care of pregnant women, an under-five clinic separated from other pediatric services, and the AIDS clinic charged with HIV care. Each of these facilities is single-purposed, each is funded by a different program, and all struggle to provide services with limited material and human resources. And, in each of these services, patients and providers sometimes find themselves falling between the cracks. A diagonal approach offers an opportunity to leverage the resources available to these various programs, not only to enhance their ability to achieve their separate goals, but also to support services that are not included in these programs but are important to the health of the target populations. Such an approach to health programming would seal the proverbial cracks between the various vertical programs and protect patients and health professionals from falling between them.

Who Sets Global Health Priorities? In a conversation about global health priorities, a physician friend working in Malawi once mentioned: “Medicine is always about priorities. That’s what you do when you see the patient in front of you; think of the whole idea of triage. Don’t you think it’s the same thing?” This raises the question: If doctors are responsible for performing triage for their patients, who is responsible for performing triage for the world? We have already explored how AIDS came to be a

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global priority; here, we turn to a more in-depth treatment of the global health decision-making infrastructure. The answer to the question of who performs triage for the world has changed quite a bit in recent decades. Until recently, the WHO played a central role in intergovernmental coordination and cooperation, with a broad mandate to improve the world’s health (Lee 2009). Under the WHO’s guidance and influence, national actors worked together to stop the spread of pathogens across borders. However, with the growing interdependence between different regions of the world, as well as the global nature of many health challenges, this old institutional architecture was ill-equipped to address health emergencies that went beyond the nation state and required a global response in both action and funding (Frenk and Moon 2013). For example, the SARS outbreak of 2002, with its rapid global spread, required not only a global mechanism of surveillance, but also wide collaboration across states and research institutions. Under these new circumstances, a new mechanism was needed, one that would be able to support collaborations beyond nation states, respond to health needs across boundaries, and allow non-state actors to assume official roles in health policy and funding. The new mechanism had to transcend the inter-national to become truly global. The current global health system has a far less defined structure than the former international health system. It demands a far more inclusive architecture that is relational and flexible (Lee 2009). For example, although the WHO and nation states participate in partnerships such as Stop TB or GFATM, the partnerships comprise many more institutional actors. In defining the global health system, Szlezák et al. (2010) describe a reality of organizational pluralism, in which the system is composed of actors operating at the community, national, and global levels to promote, restore, or maintain health. Although such diversity in the levels of operation may have existed in the past, in the new global health system, various actors have a greater role in leadership and funding. The new global health system architecture is based on the collaboration of a complicated mix of actors. At the core of this group of policymakers are the nation states and the national ministries of health. They are the actors officially responsible for making and executing health policies in their respective countries. The WHO, of course, maintains some power from its universal membership of all sovereign states. The UN and multilateral agencies with interests in health activities, including UNICEF and the World Bank, also maintain some power. Indeed, the power of the World Bank was clearly demonstrated in the recent Ebola outbreak; its response preceded the response of the WHO, and it was the first to allocate considerable amounts of aid to fight the outbreak. In addition to these multilateral powers, civil society organizations, foundations, multinational corporations, and academic institutions play a role in this system and have an influential voice. Hybrid organizations have also emerged, representing partnerships between actors inside and outside governments. Such organizations include Stop TB, GAVI, the Vaccine Alliance, and GFATM (Frenk and Moon 2013). These organizations wield unprecedented power, especially when they are

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matched with private donors, including the Bill and Melinda Gates Foundation. As such, there has been enormous growth in public-private partnerships between corporations, foundations, and intergovernmental organizations. In this “era of partnerships,” these links shape many of the policy decisions made in global health today (Walt et al. 2009). Although the structure of the modern global health system does allow for a greater plurality of participants, and it is better equipped to confront health challenges on a global scale, this new institutional architecture is not without failings. First, as might be anticipated, motivations and agendas may come into conflict when various actors must work together to set priorities and practices. Second, the diffuse structure of the system can cause an imbalance of power that may serve some actors while not necessarily considering the needs of others. For example, with funding for major global health programs resting in the hands of private philanthropic organizations in rich countries, states may find themselves pushed, or even bullied, to follow the guidelines set by said organizations. Lastly, this multilayered structure can result in delivery failures, as health systems find themselves serving multiple masters. The new global health architecture is not only evident at high-profile, ­international global health meetings; landscapes of care in many areas are shaped by various organizations and agencies working in concert to provide medical and welfare services. For example, in the small meeting between Nurse Anna, Dr. Jonathan, and Dr. Pierre described at the beginning of the chapter, providers funded by the Malawian Ministry of Health, an American hospital, and the UN were working together, providing care according to guidelines issued by the WHO. In addition, many patients at that clinic were referred to a community-­ based NGO for peer support, and the toughest cases were referred to the central hospital in the city, where Malawian and foreign physicians were conducting clinical trials funded by North American and European universities and research foundations. This new global health system architecture, with its diffuse structure and multiple power cores, has had a tremendous impact on the Malawian health system in general and the ART rollout in particular. As an aid-receiving country that took on the challenge of joining the 3 by 5 Initiative, Malawi has borne the fruits of the new global health system. After Malawi’s government joined this international effort, multiple partners emerged to support the country’s rollout, including GFATM, DFID, and various international NGOs operating in the country, among them Partners in Health and Médecins sans Frontières. Although the Ministry of Health was the central authority making policy decisions and setting guidelines for practice, new policies relied heavily on international guidelines and experts, and no less important, international funding. Thus, although the Ministry of Health established all local treatment policies, guidelines followed the recommendations made by the WHO and other international organizations. Unfortunately, these recommendations do not always take into consideration the reality on the ground. In addition, all the guidelines include

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surveillance measures required by donor organizations; however, neither donors nor the government provides health professionals with adequate surveillance infrastructure. As a result, health professionals are constantly engaged in endless paperwork that takes up much of their already limited clinical interaction time. The tensions between local and global centers of power and decision-­m aking, as well as the overall weakness of the health system, have created a reality in which these new structures have simultaneously strengthened the health system and burdened it.

How Do Global Health Priorities Get Set? Above, we discussed how some diseases, such as AIDS and H1N1, are accorded high-priority status. We have also discussed who sets the priorities. But, how do such health priorities get set generally? How does the process of triage at the global level work? It is certainly not purely on the basis of the distribution of the burden of disease (Hanlon et al. 2014). Consider that 1.5 million people died of AIDS-related causes in 2013, and the annual mortality for seasonal influenza is estimated at about 250,000 to 500,000 people (WHO 2014). However, 4.9 million children under the age of 5 died from infections or neonatal or nutritional conditions in 2015, and 800 women died every day from complications of pregnancy and childbirth in 2013 (WHO 2015). Why aren’t these causes of death afforded greater priority? When it comes to hierarchies of emergency, it is as much about the “who” as the “how much.” Diseases that affect the affluent tend to garner more attention than those, like diarrheal diseases, that affect primarily the poor. AIDS might seem an important exception. After all, 25 million people with HIV, roughly 70% of the global total, live in sub-Saharan Africa (WHO 2015), yet it is at the top of the global health priority list. Indeed, in 2013, nearly $20 billion supported the HIV/AIDS response in low- and middle-income countries (Kates et al. 2014). The campaign to provide HIV treatment to people in poor countries was not simply rooted in the discourse of a right to health and led by AIDS organizations. It captured the imagination of the public in Western countries. Commercial campaigns led by fashion companies, artists, and celebrity activists brought the topic of AIDS treatment into affluent homes in the northern hemisphere through concerts, talk shows, and t-shirts. The change in this infection’s priority status was not only occurring in the halls of governments and global health organizations. Changes in public discourse were part of the political environment, enabling major policy changes in global health to happen. It is hard to pinpoint the exact reasons for this change: Potential contributors include a confluence of political circumstances, a sense of the old world order collapsing after the events of 9/11, a general fatigue of the hardline anti-aid trend, and the mere whims of fashion. Although the AIDS epidemic has been exceptional from its first days, it is clear that the shifts that the global response underwent over the years have been caused by converging and complex social, political, and cultural forces.

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Terminology and language, priorities in resource allocation, and the desire for a good cost-benefit impact are at the heart of many decisions in the halls of global health organizations. Global health actors are not without good intentions and do not lack well-informed agendas. However, this process of triage has yielded some clear winners and some clear losers. Besides AIDS, winners include infections such as TB and malaria, which are all a part of a long-lasting battle to eradicate major infectious diseases. Clear losers, despite the considerable burden of morbidity and mortality they inflict, include respiratory infections, childhood diarrhea, maternal health, and non-communicable diseases, which are either seen as too complex to eliminate or designated as less critical in resource-limited settings. As a result, the only way individuals and local organizations have to gain support for their non-AIDS problems, health and otherwise, is often to harness their cause to the fight against AIDS. Although AIDS cannot be separated from other problems affecting many of the nations of the developing world, such as extreme poverty and the abuse of human rights, the language of AIDS has become the best way to get assistance. This focus on AIDS has brought attention to the state of health and health services in sub-Saharan Africa like never before. In effect, interest in health in Africa is so pervasive in both international and local arenas that it has become an all-encompassing narrative. Paraphrasing Appadurai’s (2002) observations on the attributes of global life, AIDS had turned the environment in which many people in Africa live into a healthscape: a landscape marked, monitored, and assisted by needs and understandings of health and disease. In this healthscape, reality is understood in terms of health problems and needs, and all decisions and policies, as well as interpretations of reality, are made through the prism of health. The creation of this healthscape is problematic not only because it blinds us to other needs and to the interrelations between them and the AIDS epidemic, but also because it strengthens First–Third World power relations that post-development thinkers have brought to our attention (Escobar 1995). Seeing the developing world, in general, and ­A frica, in particular, through this healthscape reinforces notions of helplessness. Finally, there is the lurking concern that surges of attention are quick to change when something more interesting appears on the horizon; passing fancies go against the essence of productive and effective healthcare delivery, which requires long-term, considered commitment. Is it possible that the global passion for AIDS intervention will eventually wane, and with it, developmental assistance for health? In the case of Malawi, the focus on AIDS created an opportunity to scale up treatment for a disease that was shattering the nation. However, when a frustrated nurse says at an interview that “I treat AIDS, I can’t help with anything else,” she is addressing the everyday price of global priority setting. Similarly, when Agnes the patient is pulled off the nutritional support program after 3 months, even though she is still struggling with malnutrition, these global ­priorities are at play.

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Global Priorities and OVC Tours Global priorities and agenda setting are also evident in the ways that AIDS and AIDS discourses have penetrated everyday life in Malawi. The extent of the penetration of global health priorities and agendas was made clear to me in late 2006, as I was walking around one of the villages in the northern region of Malawi with Dave, a friend and community officer for an NGO working with children in that district. At some point, we came across a few people who invited us to join them and go look at OVCs. Slightly confused, I assumed I misunderstood the invitation. To my bewilderment, I ­realized I was right, and we were indeed invited to look at Orphans and Vulnerable Children living in the village. Much has been said about Slum Tours in Nairobi and Rio de Janeiro, in which tourists are invited on site-seeing tours of the poor (Chege and Mwisukha 2013; Frenzel et al. 2012; Meschkank 2011; Rolfes 2010; Selinger and Outterson 2010). Even so, the invitation to go on an “OVC Tour” caught me by surprise. The use of the term OVCs (and their desirability as the subject of a tour) is one marker of the infiltration of concepts representing global health priorities and agendas, or a global health language, into the everyday lives of people in Malawi. The 1990s marked the initial discourse on the plight of children in the age of AIDS. During the first years, “AIDS orphans” were the focus of major debates: What happens to them? Do they deserve priority over other affected children? Are they HIV positive? As years passed, discourse emerged not only around the fact that they exist and require care, but also about what they should be called. The term “AIDS orphans,” it was argued, was stigmatizing and inaccurate, as in many cases, the parents’ cause of death was unknown (Madhavan 2004). Shortly after the term “AIDS orphans” was deliberately changed to the generic term “orphans,” activists, as well as researchers, began to argue that children who still had parents were vulnerable as well. With rising levels of AIDS-related morbidity and mortality, and their impact on kinship systems and social institutions, the AIDS epidemic increased poverty and weakened families, making many children vulnerable. Following this recognition, a new term was born: “Orphans and Vulnerable Children.” And, like every good international agency catchphrase, the term received an acronym: OVCs.4 And so, we found ourselves following our hosts, peeking into households where children who were orphaned lived with extended family members; playing with kids who were part of a local initiative to support the children of chronically ill members of the community; and talking to a group of elderly women who cared for orphaned children or children from very poor households by providing them with meals or washing their school uniforms (a prerequisite for attending school). These elderly women introduced themselves as women who take care of OVCs, of whom some were Single-Orphans and some Double-­ Orphans. The women used the terms Single-Orphans and Double-Orphans, exactly as used in international reports, to indicate whether a child had lost either

Hierarchies of Emergency  37

one or both parents. And, they did so in English and not in any of the local ­languages. Some of the women explained that one’s work with OVCs often starts in one’s own household, by caring for children from one’s extended family, and grows into an NGO by attaining financial support from the district authorities or from international NGOs. I was surprised to see how common the use of the term OVC was in the community. However, the term Orphans and Vulnerable Children hides more than it reveals. Although children affected by AIDS are a global priority, there are no clear definitions as to who these children are. There are no unified criteria for determining the vulnerability of a child, nor for distinguishing children whose rights we should be protecting from those to whom these rights do not extend. This ambiguity is not a product of the adaptation of a foreign term. According to the World Bank (2005), “The concept generally refers to orphans and other groups of children who are more exposed to risks than their peers,” and according to PEPFAR (2012), “A vulnerable child is one who is living in circumstances with high risks and whose prospects for continued growth and development are seriously threatened.” What the World Bank and PEPFAR definitions have in common is the fact that they are non-definitions. In an effort to be accurate and refrain from stigmatizing children, the term Orphans and Vulnerable Children and its useful acronym have turned into a very clean catchall phrase. And thus, OVCs are indeed a priority in the global AIDS response, although we cannot definitively say who they are. The wide adoption of the term OVCs, like many other similar terms,5 might be understood as an expression of the broader themes that buzz around development and humanitarian agencies (Gatter 1993) and trickle down as key idioms in the daily use of health workers and community activists alike. Nevertheless, the use of these buzzwords by non-health workers and non-activists does not necessarily imply a deep engagement with their original meaning, but rather participation in the prevailing discourse. The use of buzzwords resembles the use of other forms of symbolic capital (Bourdieu 1984, 1985, 1989), enabling the speaker to position himself or herself in a social interaction by declaring both knowledge and authority over others. But, the ability to speak the global health language can also be a critical tool of empowerment to the elderly woman in the village who is able to care for OVCs and access OVC funding to support herself and the children under her care, and to the village man hosting an OVC Tour to the anthropologist and the NGO worker visiting his village. By speaking the global health language, they both are part of the architecture of the new global health system. The complex, flexible, and ever-changing architecture of the new global health system and its multiple actors, as well as the adaptive language and meanings it creates, reflect one of its most important features: the link between the global and the local. Such links are far more intricate than a top-down, unidirectional influence going from the global level to shape local reaction and practices. In truth, although many global health decisions are top-down by nature, a constant

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feedback loop of practices and meanings, as well as the actual architecture of the global health system, which is constructed from local community organizations, nation states, local and international NGOs, UN agencies, and various partnerships and stakeholders, tie the local and the global in unbreakable bonds. The OVCs defined by global actors as a priority in AIDS response are translated into the needs of village everyday life, and these uses echo back into the global response as they impact the ways in which global health policy is practiced on the ground.

Conclusion Major players in the new world of global health set the stage for the ART rollout in Malawi, saving countless lives. A virtual flood of development assistance for health, and particularly AIDS, began flowing into sub-Saharan Africa in the early 2000s, and although this support represents a tremendous financial investment in global health, the sheer magnitude of the demands being placed on low-resource health systems highlights important healthcare delivery problems. During the years of the 3 by 5 Initiative, 1.3 million people in low- and middle-income counties gained access to ART. Although the program’s goal of reaching 50% of all those in need of treatment was not reached, the Initiative was a turning point. The scale-up of HIV care that followed brought ART to 11.7 million people in low- and middle-income countries. However, in Malawi, the estimated ART coverage among people living with HIV is still just 46%, which means that over half of the people in need of treatment cannot access it (WHO 2015). The new global health system was the catalyst for tremendous changes, but there is still a long way to go. The decision by global policymakers to support ART continues to shape the lives of both Malawians who rely on ART and those who do not. The scale-up of ART in the country not only saved the lives of people who were dying of AIDS and improved the lives of those living with HIV, but it also changed the fate of communities struggling with AIDS-related morbidity and mortality. These new policies enabled the creation of new ART clinics and provided the basis for the standardized guidelines under which these clinics operate; they provided the infrastructure for the creation of funding mechanisms and brought together funders from various international agencies, NGOs, and private philanthropists. Policy decisions supported by the global health system not only brought Nurse Anna, Dr. Jonathan, and Dr. Pierre to the same clinic, but they also created the environment in which Agnes could accept her HIV diagnosis and start to live again. And, of course, these changes are not just occurring in Malawi, but they are occurring in low-resource settings all over the world as well. Despite the indisputable progress seen in recent years, it is important to critically examine the processes by which global triage occurs and hierarchies of emergency are decided. As discussed in this chapter, the experiences of the Malawians affected by these decisions highlight the need to bridge the vertical-horizontal

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divide to better achieve long-term improvements in the health of populations around the world. These people are not only the faces of the new global health policies—the beneficiaries of new therapies and services—but also, in some cases, the victims of new hierarchies of emergency. Continued attention to their stories may help lead the way forward to more effective and compassionate forms of healthcare delivery.

Notes 1 The everyday meanings of this shift from prevention to treatment, and the rollout of massive voluntary counseling and testing services without the promise of reliable care, have been explored not only from a scientific perspective, but also from a more journalistic one (Steinberg 2008). 2 Ravishankar et al. (2009:2113) define development assistance for health (DAH) as “all flows for health from public and private institutions whose primary purpose is to provide development assistance to low-income and middle-income countries.” 3 Patients registered for AMPATH’s HIV services undergo an evaluation for various welfare services, including food security measures and additional family assistance, such as microenterprise and agricultural training, in addition to the clinical evaluations determining the course of their HIV treatment (Mamlin et al. 2009). 4 Following the transformation of “orphans” into “orphans and vulnerable children,” “orphanages” transformed into “children’s homes.” 5 Terms like “psychosocial support,” “holistic approaches,” and “empowerment” are no longer limited to international reports, but are now commonly used by practitioners, activists, and community members and environments saturated with development and aid projects.

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Frenk, J. 2010. The global system: Strengthening national health systems as the next step for global progress. PLoS Medicine 7(1):e1000089. Frenk, J., and S. Moon. 2013. Governance challenges in global health. New England ­Journal of Medicine 368(10):936–942. Frenzel, F., K. Koens, and M. Steinbrink, eds. 2012. Slum Turism: Poverty, Power and ­Ethics. London and New York: Routledge. Gatter, P. 1993. Anthropology in Farming Systems Research: A Participant Observer in Zambia. In Practising Development. J. Pottier, ed. pp. 153–186. London: Routledge. Gonzalez, C.L. 1965. Mass Campaigns and General Health Services. World Health Organization. Hanlon, M., C. Graves, B. Brooks, A. Haakenstad, R. Lavado, K. Leach-Kemon, and J. Dieleman. 2014. Regional variation in the allocation of development assistance for health. Globalization and Health 10(1):8. Irwin, A., J. V. Millen, and D. Fallows. 2003. Global AIDS: Myths and Facts. Cambridge, MA: South End Press. Kates, J., A. Wexler, and E. Lief. 2014. Financing the Response to HIV in Low- and Middle-Income Countries: International Assistance from Donor Governments in 2013. Kaiser Family Foundation and UNAIDS. Koenig, S. P., F. Léandre, and P. E. Farmer. 2004. Scaling-up HIV treatment programmes in resource-limited settings: The rural Haiti experience. AIDS 18:S21–S25. Lancet. 2008. Finding solutions to the human resources for health crisis. The Lancet 371(9613):623. Leach-Kemon, K., D. P. Chou, M. T. Schneider, A. Tardif, J. L. Dieleman, B. P. C. Brooks, M. Hanlon, and C. J. L. Murray. 2012. The global financial crisis has led to a slowdown in growth of funding to improve health in many developing countries. Health Affairs 31(1):228–235. Lee, K. 2009. World Health Organization (WHO). New York: Routledge. Libamba, E., S. D. Makombe, A. D. Harries, E. J. Schouten, J. K. Yu, O. Pasulani, E. Mhango, J. Aberle-Grasse, M. Hochgesang, E. Limbambala, and D. Lungu. 2007. Malawi’s contribution to “3 by 5”: Achievements and challenges. Bulletin of the World Health Organization 85(2):156–160. Lowrance, D. W, S. Makombe, A. D. Harries, R. W. Shiraishi, M. Hochgesang, J. ­Aberle-Grasse, E. Libamba, E. Schouten, T. Ellerbrock, and K. Kamoto. 2008. A public health approach to rapid scale-up of antiretroviral treatment in Malawi during 2004–2006. Journal of Acquired Immune Deficiency Syndromes 49(3):287–293. doi:10.1097/QAI.0b013e3181893ef0. Madhavan, S. 2004. Fosterage patterns in the age of AIDS: Continuity and change. Social Science & Medicine 58(7):1443–1454. Makombe, S. D., A. Jahn, H. Tweya, S. Chuka, J. K.-L. Yu, H. Mindy, J. Aberle-Grasse, O. Pasulani, E. J. Schouten, K. Kamoto, and A. D. Harries. 2007. A national survey of the impact of rapid scale-up of antiretroviral therapy on health-care workers in ­Malawi: Effects on human resources and survival. Bulletin of the World Health Organization 85(11):851–857. Mamlin, J., S. Kimaiyo, S. Lewis, H. Tadayo, F. K. Jerop, C. Gichunge, T. Petersen, Y. Yih, P. Braitstein, and R. Einterz. 2009. Integrating nutrition support for food-­ insecure patients and their dependents into an HIV care and treatment program in western Kenya. American Journal of Public Health 99(2):215–220. Mandala, E. C. 2005. The End of Chidyerano: A History of Food and Everyday Life in Malawi, 1860–2004. Portsmouth, UK: Heinemann.

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Marseille, E., P. B. Hofmann, and J. G. Kahn. 2002. HIV prevention before HAART in sub-Saharan Africa. The Lancet 359(9320):1851–1856. McCoy, D., S. Bennett, S. Witter, B. Pond, B. Baker, J. Gow, S. Chand, T. Ensor, and B. McPake. 2008a. Salaries and incomes of health workers in sub-Saharan Africa. The Lancet 371(9613):675–681. McCoy, D., B. McPake, and V. Mwapasa. 2008b. The double burden of human resource and HIV crises: A case study of Malawi. Human Resources for Health 6(1):16. Meschkank, J. 2011. Investigations into slum tourism in Mumbai: Poverty tourism and the tensions between different constructions of reality. GeoJournal 76(1):47–62. Messac, L., and K. Prabhu. 2013. Redefining the Possible: The Global AIDS Response. In Reimagining Global Health: An Introduction. P. Farmer, J.Y. Kim, A. Kleinman, and M. Basilico, eds. pp. 111–132. Berkeley, CA: California University Press. Moatti, J. P., I. N'Doye, S. M. Hammer, P. Hale, and M. Kazatchkine. 2003. Antiretroviral treatment for HIV infection in developing countries: An attainable new paradigm. Nature Medicine 9(12):1449–1452. Mtika, M. M. 2001. The AIDS epidemic in Malawi and its threat to household food security. Human Organization 60(2):178–188. Munthali, A. C. 2002. Adaptive Strategies and Coping Mechanisms of Families and Communities Affected by HIV/AIDS in Malawi. United Nations Research Institute for Social Development (UNRISD). Muula, A., J. Chipeta, S. Siziya, E. Rudatsikira, R. Mataya, and E. Kataika. 2007. ­Human resources requirements for highly active antiretroviral therapy scale-up in Malawi. BMC Health Services Research 7(1):208. NAC. 2003. National AIDS Commission: National Estimates of HIV/AIDS in Malawi. National AIDS Commission. Nattrass, N. 2006. What determines cross-country access to antiretroviral treatment? Development Policy Review 24(3):321–337. Nattrass, N., and N. Geffen. 2005. The impact of reduced drug prices on the cost-­ effectiveness of HAART in South Africa. African Journal of AIDS Research 4(1):65–67. Ooms, G., W. Van Damme, B. Baker, P. Zeitz, and T. Schrecker. 2008. The ‘diagonal’ approach to Global Fund financing: A cure for the broader malaise of health systems? Globalization and Health 4(1):6. Palmer, D. 2006. Tackling Malawi’s human resources crisis. Reproductive Health Matters 14(27):27–39. PEPFAR. 2012. Guidance for Orphans and Vulnerable Children Programming. Rasschaert, F., M. Pirard, M. Philips, R. Atun, E. Wouters, Y. Assefa, B. Criel, E. Schouten, and W. Van Damme. 2011. Positive spill-over effects of ART scale up on wider health systems development: Evidence from Ethiopia and Malawi. Journal of the International AIDS Society 14(1):1–10. Ravishankar, N., P. Gubbins, R. J. Cooley, K. Leach-Kemon, C. M. Michaud, D. T. Jamison, and C. J. L. Murray. 2009. Financing of global health: Tracking development assistance for health from 1990 to 2007. The Lancet 373(9681):2113–2124. Rolfes, M. 2010. Poverty tourism: Theoretical reflections and empirical findings regarding an extraordinary form of tourism. GeoJournal 75(5):421–442. Sachs, J. D. 2004. The End of Poverty: How We Can Make It Happen in Our Lifetime. New York: Penguin. Selinger, E., and K. Outterson. 2010. The ethics of poverty tourism. Environmental ­Philosophy 7(2):93–114.

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Shrestha, S. S., D. L. Swerdlow, R. H. Borse, V. S. Prabhu, L. Finelli, C. Y. Atkins, K. Owusu-Edusei, B. Bell, P. S. Mead, M. Biggerstaff, L. Brammer, H. Davidson, D. Jernigan, M. A. Jhung, L. A. Kamimoto, T. L. Merlin, M. Nowell, S. C. Redd, C. Reed, A. Schuchat, and M. I. Meltzer. 2011. Estimating the burden of 2009 pandemic influenza A (H1N1) in the United States (April 2009–April 2010). Clinical Infectious Diseases 52(suppl 1):S75–S82. Steinberg, J. 2008. Sizwe’s Test: A Young Man’s Journey through Africa’s AIDS Epidemic. New York: Simon & Schuster. Sullivan, N. 2011. Mediating abundance and scarcity: Implementing an HIV/AIDS-­ targeted project within a government hospital in Tanzania. Medical Anthropology 30(2):202–221. Szlezák, N. A., B. R. Bloom, D. T. Jamison, G. T. Keusch, C. M. Michaud, S. Moon, and W. C. Clark. 2010. The global health system: Actors, norms, and expectations in transition. PLoS Medicine 7(1):e1000183. UNAIDS. 2010. Global Report: Number of people newly infected with HIV. Vaughan, M. 1987. The Story of an African Famine: Gender and Famine in Twentieth-Century Malawi. Cambridge, MA: Cambridge University Press. Walsh, J. A., and K. S. Warren. 1979. Selective primary health care. New England Journal of Medicine 301(18):967–974. Walt, G., N. Spicer, and K. Buse. 2009. Mapping the Global Health Architecture. In Making Sense of Global Health Governance: A Policy Perspective. K. Buse, W. Hein, and N. Drager, eds. pp. 47–71. New York: Palgrave MacMillan. WHO. 2003. Treating 3 million by 2005: Making it happen: The WHO Strategy. World Health Organization. ———. 2009. Human Resources for Health Country Profile: Malawi. Global Health Workforce Alliance. ———. 2011. Implementation of the International Health Regulations (2005): Report of the Review Committee on the Functioning of the International Health Regulations (2005) in relation to Pandemic (H1N1) 2009 World Health Organization. ———. 2014. Influenza (Seasonal). World Health Organization. ———. 2015. Global Health Observatory (GHO) data. World Health Organization. World Bank. 2005. Orphans and Vulnerable Children Toolkit for sub-Saharan Africa. Young, S., A. Wheeler, S. McCoy, and S. Weiser. 2014. A review of the role of food insecurity in adherence to care and treatment among adult and pediatric populations living with HIV and AIDS. AIDS and Behavior 18(5):505–515. Zarocostas, J. 2012. Funding crisis threatens global fight against HIV/AIDS. The Lancet Infectious Diseases 12(1):13–14.

3 Stretched Too Thin Malawi’s National Shortage of Healthcare Workers

A Tour of the District Hospital The Maternity Ward During the months of fieldwork at the district hospital, I took some time to explore other health facilities and stayed at an NGO hospital in a remote rural area of Malawi. The staff there would often remark that their hospital was small and only served a tiny portion of the population. Supported by private donors, it was the absolute opposite of public hospitals in Malawi. Most people, they said, were treated at the local district hospital; these patients were the unfortunate ones. And, without visiting a public hospital, the NGO staff said, I would never understand why. One day, the medical director of the NGO hospital, who had once worked in the public system, invited me to see the maternity ward of the local district hospital. Even though I had spent months there doing the research for this book, after a few weeks at this small private NGO hospital, I had gotten used to the more comfortable facilities and the relatively large number of staff. Thus, I knew that visiting a public hospital was an opportunity to see it again with fresh eyes. Once we entered the district hospital, the differences were obvious. In the maternity ward, women were lying on beds and floors, and the delivery units were in a dim corner at the back of a hallway. The ward had very few windows and was mostly dark. The heavy humid heat of the rainy season was magnified by the absence of ventilation. We were hoping to speak with some of the providers, but it was nearly impossible to talk to the nurses. They were running around between the delivery area and the other wards. After walking through the ward and talking to some of the women very briefly about their newborns and how they felt, the classic maternity ward small talk, we left quickly.

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Even though my friend had worked in that public hospital in the past, and knew it very well, he was clearly uncomfortable. We walked out and sat in the shade. Neither of us could speak. In the car, going back to his NGO hospital, my usually kind, good-hearted, and mild-mannered friend said sharply, “Sometimes I think all these big policy people should be required to have their babies in a place like this.”

The Female Ward During the time I worked at the district hospital, a friend I knew from my previous visits to the country was hospitalized with an acute infection. Learning my friend was ill, I hurried to the hospital to see her. But this time was different— this time, I was walking through the gates of the hospital as a friend. When I showed up in the female ward to visit her and bring food, I saw things with fresh eyes. To my surprise, I was once again struck by the conditions at the hospital. A nurse I knew told me that the female ward was even more overcrowded than usual that day. Women were lying on the floor due to the lack of available beds. Family members, who were there to assist in the care of their loved ones, were congregating next to the overflowing bathrooms, which were the only unoccupied area in the ward. Only one nurse was covering the ward that day. However, that single nurse squatting on the floor listening patiently to a woman who was sitting on a mat, for lack of beds, stuck with me. Responding to my overwhelmed expression, my friend, who was affluent by rural standards, said, “This is what it is like here for those who can’t go to a private hospital in the city.”

The HIV Clinic Fieldwork at the antiretroviral therapy (ART) clinic sometimes felt like a fast-forward clip. The silent early morning hours before the doors were unlocked ended as soon as the staff arrived; the buzz of activity reached a crescendo with the midday rush of patients. The sounds of the clinic at midday were a mélange of conversation, the cries of a baby, a truck driving by, and the chickens in the hospital yard that congregated at the window. Amid this turmoil, the clinic’s staff seemed to be in constant motion. The clerk signed patients in and escorted them through the waiting room, sharing the task of weighing every new arrival with the cleaner. A nurse and a clinical officer sat in their respective rooms, across the hallway from each other, their doors opening and closing every few minutes. In the afternoon, the rhythm of the clinic would slow down until the last patient walked out the door. Three days a week, from 7:30 a.m. to 5:00 p.m., one never saw nurses chatting or a clinical officer drinking tea. More often than not, you wouldn’t even find the staff in the lunchroom. The food brought from the hospital’s staff kitchen usually sat for hours in the small kitchen at the clinic, waiting for the staff to rotate through. Living through this fast-forward clip exhausted

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the clinic’s staff. Yet, they were there every clinic day. And, when they were not at the clinic, they were working in the wards. As you may have noticed, the common theme in this tour of the district hospital is Malawi’s severe shortage of healthcare workers. This shortage shapes the face of healthcare delivery in every ward of a Malawian hospital. Although the shortage is not unique to HIV care, it does represent one of the biggest barriers to the ART rollout. In the previous chapter, we investigated the effects of global health policy on HIV care in Malawi. In this chapter, we turn to one of the biggest problems at the national level, the healthcare worker shortage. We investigate the policies that Malawi has crafted to address this problem, as well as the effects that these policies have had on healthcare workers and their patients.

Three Strategies to Address the Shortage of Healthcare Workers The crisis in the health workforce was evident in the Malawian healthcare system long before the ART scale-up. Hospitals and clinics around the country were overwhelmed by the needs of patients suffering from chronic and acute diseases, and the constant needs relating to primary care. However, the demands that the AIDS crisis put on the already weak healthcare system made it clear that any response would require an organized and coordinated effort in terms of the health workforce. It was estimated that a national ART rollout would require 16% of all nurses, 454.2% of all pharmacists and pharmacy technicians, and 55% of all clinicians to dedicate themselves solely to the care of people with HIV/ AIDS (Muula et al. 2007). In an already overburdened healthcare system, this was obviously impossible. As discussed in the previous chapter, in adopting the goals and strategies of the 3 by 5 Initiative to roll out HIV care, the Malawian government’s response included a health workforce-strengthening component from its first stages. Developed by the Malawian Ministry of Health with the support of international consultants, the Emergency Human Resource Program (EHRP) was created to respond to the needs of a national Essential Health Package, which included the ART scale-up. The goal was to create a comprehensive program that would tackle the issue of workforce shortages from multiple angles. From dedicating more funding to training new cadres of health professionals to creating mechanisms to support human resource management countrywide, the EHPR was understood as one of the essential building blocks of the ART scale-up (Palmer 2006). However, in Malawi as in many other developing countries, the reality of healthcare delivery became a mix of planned and unplanned policies and consequences. A more thorough look at the way the health workforce shortage was tackled on the ground reveals a combination of strategies that have had varied effects on the delivery of health services, some good and some bad.

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Strategy 1: Task Shifting to Non-physicians The standard of ART care requires a minimum of one or two physicians and seven nurses for the provision of services to every 1000 patients. In Malawi, as in many other countries in the region, it was immediately clear that this standard could not be achieved (Lancet 2008). Under these circumstances, programs across the country started promoting task shifting as a strategy to scale up ART. Task shifting is described by the WHO as follows: A process whereby specific tasks are moved, where appropriate, to health workers with shorter training and fewer qualifications. By reorganizing the workforce in this way, task shifting can make more efficient use of existing human resources and ease bottlenecks in service delivery. Where further additional human resources are needed, task shifting may also involve the delegation of some clearly delineated tasks to newly created cadres of health workers who receive specific, competency-based training. (WHO 2008b:7) Delegating tasks to cohorts of health workers with lower qualifications, or lay workers, and incorporating non-physicians into treatment programs, enabled Malawi to scale up ART services in areas suffering from severe workforce shortages (Bemelmans et al. 2010; McCollum et al. 2010; Zachariah et al. 2009). In most of Malawi’s hospitals and clinics, physicians are a rare commodity, and even the nurses who perform most of the clinical work are in short supply. Since many of the clinical decisions regarding treatment initiation and changes are traditionally made by physicians, in the absence of task shifting, these important decisions would need to be delayed until a trained, certified physician could be found. By shifting the responsibility for ART treatment initiation from physicians to nurses, and the responsibility for ART adherence support from nurses to counselors and lay workers, however, programs can make better use of the available human resources. Instead of waiting for appointments with physicians, which are few and far between, patients can now see nurses to initiate treatment. The idea of task shifting was not foreign to the Malawian healthcare system at the beginning of the rollout. Dating back to the period preceding the ART scale-up, Malawi had already trained cadres of clinical officers, medical assistants, and health surveillance assistants (HSAs) who were employed as general health practitioners in health facilities and as community health workers in under-five clinics and vaccination programs (McCoy et al. 2008). However, the expansion of task shifting, and the specialization of task shifting to ART services, allowed for increased access to HIV care. A massive effort was needed to train new healthcare professionals to take over the delivery of ART. The EHRP training programs resulted in a 12% increase in new medical doctors and a 72% increase in newly trained nurses, and it more than doubled the number of community health workers (Rasschaert et al. 2011).

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These newly trained health workers were rapidly integrated into the healthcare system and augmented its efforts to provide universal access to ART. These new health workers came from various backgrounds: They included graduates of the country’s top secondary schools who aimed to become physicians, clinical officers, and nurses, as well as graduates of less prestigious rural institutions who were training to become HSAs. Yet, they were united in working toward an ambitious goal. Although contested and criticized, and by no means free from complications, task shifting, enabled by the simplification of treatment protocols ­(discussed later), has measurable positive outcomes in terms of the volume of patients treated and their health outcomes (Bemelmans et al. 2010; Callaghan et al. 2010; Ferradini et al. 2006; Lowrance et al. 2008; McCollum et al. 2010; Rasschaert et al. 2011; Zachariah et al. 2009). Obviously, after task shifting, facilities were better equipped in terms of human resources and thus were able to initiate treatment for and to follow up on more patients. As intended, task shifting allowed programs to reach more potential patients with more services. Margaret was one of the nurses to whom many tasks in the HIV clinic had been shifted. We first met when she was a nurse-in-training temporarily assigned to the clinic for 2 weeks before being given her permanent assignment. She was a city girl from a relatively affluent home outside the district, and the differences between her and most of the patients, who were often rural and very poor, were evident. Yet, her affluent upbringing and education never seemed to impact her interactions with patients. In her early 20s, Margaret was tall and slender and quick to smile, and she quickly became loved by both patients and staff. Although she was primarily shadowing the clinic’s nurses during her nursein-training assignment, after a few days, she began to show initiative far beyond her official role as a student nurse. It was not just that she would support the nurses by taking over some of their tasks, such as filling out forms and stocking medication, but very soon into her assignment, Margaret felt comfortable talking to patients about their health status, and keeping track of changes in treatments or side effects. One day, as we were organizing patients’ files at the end of the day, I asked her about her future plans. Because the government funded their training, young nurses did not have much control over their first assignments. Like many nurses who were raised in the city, Margaret was hesitant about moving to a rural area, especially a remote one. But to my surprise, it was not the lack of running water or electricity that worried her, nor was it the distance from her family. Margaret’s concern was the standard of health facilities in rural areas. She was worried that she might find herself unsupported and ill-equipped to adequately care for her patients. The hospital we were in, she explained, was actually not too bad. It was indeed in a rural district, but not a remote one. And, it was a real hospital, with wards and an operating theater, and nurses and clinical officers. It even had two physicians. Surprisingly, when I asked Margaret what her ideal assignment would

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be, she talked about another rural district hospital. Remote and inaccessible, the hospital she talked about could have been any young nurse’s nightmare. But, a few years prior to our conversation, an American NGO had established its site there and started working with the Ministry of Health to change that hospital’s fate. New facilities, new services, and an influx of healthcare professionals from Malawi and abroad had changed that hospital from one of the least desired in the country to one that attracted young professionals. When asked why she would want to work there, Margaret answered without hesitation: “Because you can actually do medicine there.” Margaret, like many other health professionals, was passionate about her work, but she knew very well that without the appropriate working conditions and support, she would not be able to perform the job she was trained to do. Much to the ART clinic’s satisfaction, Margaret returned a few weeks after her nurse-in-training assignment ended. Soon enough, she joined the nurse’s rotation. Unlike previous generations of nurses, she had already been trained as an ART provider in nursing school, and thus, she did not require additional training. Margaret was even somewhat surprised when I asked her about her ART training. Of course, she was certified as an ART provider; everyone in her cohort was! Margaret’s story is not only the story of one young nurse. It also illustrates what task shifting has to offer the new cadres of health professionals: more responsibilities, better training in the newest treatment regimes, and opportunities for specialization and promotion, not to mention the personal fulfillment that comes from seeing a growing volume of patients receiving the care they need. However, as Margaret and her peers clearly stated, none of these opportunities could come to fruition without the appropriate infrastructure or a well-­ functioning healthcare system. Positive outcomes and personal fulfillment notwithstanding, it is clear that task shifting should not be a stand-alone solution. Instead, it should be applied as part of an overall strategy focused on training and retaining health professionals, as well as creating productive work environments to suit their professional training and aspirations (Philips et al. 2008). For many health workers, the gap between their hopes as health professionals in training and the reality of working in the healthcare system is incredibly discouraging.1 In practice, even the incorporation of clinical officers and other health professionals does not shield healthcare workers from immense pressure—or their patients from the effects of being cared for by harried and overworked clinicians. Take the experience of Jonas, one of the clinical officers at the ART clinic where I worked. By the time I arrived at the clinic, Jonas was already one of its most prominent figures. Smartly dressed, with a white clinician’s coat, he seemed to be everywhere at once and the embodiment of an ART provider. His original clinical officer training did not include modules on HIV care, so after graduating and completing his internship, he was sent to a special Ministry of Health training program. With his additional certification, Jonas was assigned to the ART

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clinic. Three years out of training, two of them spent at the clinic, Jonas was comfortable in his role and was often assigned managerial tasks and the supervision of new clinical officers. His work at the ART clinic helped compensate for the lack of trained physicians.2 Jonas treated the clinic’s endless stream of patients with infinite care. Friendly and warm, he never showed a hint of impatience while talking with a patient, even when a dozen more waited outside his door. The younger clinical officers often approached him with questions, and so did many of the nurses. In fact, Jonas was so used to his role as a mentor, he would often pause during a clinical interaction to make sure that I, the non-clinician, was on top of what was going on. But, Jonas’ easy-going appearance did not mean that he was oblivious to the pressures of providing HIV care at the clinic. The clinic was preparing to expand, and under the Ministry of Health, it was training clinical officers and nurses to become ART providers for future sites to be opened in the district. Until those sites were prepared to provide care, however, and not just voluntary counseling and testing, the burden of provisioning ART was still on the clinic, and the new providers were still only providers in waiting. As an experienced clinical officer certified in HIV care, Jonas was doing shifts at the ART clinic while also rotating in other wards at the hospital. As he explained, I am a general practitioner, okay, so I also take care of other patients. We are maybe 45 [clinicians at the hospital], we are sort of divided in medical departments. So medical, we are talking about the female ward, male ward, and the TB ward okay. So during the time that I am not here, I am also taking care of the wards there. I am supposed to do the ward rounds. We alternate the days, so maybe today I will be in the female ward, and the other day I will be at the TB ward. That’s how we do it. Having to constantly move between wards and clinics meant that Jonas and his colleagues were not only physically running around the hospital, but they were also required to alternate specialties and were often unable to follow up on patients. When the wards did not have enough clinical officers, Jonas and his colleagues would be called back from the ART clinic to support rounds in the wards. This constant movement left some of them breathless, especially since this was not a temporary situation or part of their training, but their everyday reality. Although aware of the shortcomings of the care he was able to provide to his patients, Jonas was always industrious and dedicated. He said of the benefits of his role as a clinical officer at an ART clinic: “Personally, myself, I would like to see somebody who was not working previously, was very ill before, starting the treatment and recovering. At least go back to work. For me it’s an achievement, for me it is good.” Jonas’ excitement about the results of the care he provided was his motivating force. As we know from other studies in Malawi, burnout was a real threat for many of his colleagues in the healthcare system (Brugha et al. 2010; Thorsen et al. 2011); the experience of being a part of this new process

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of care that made an extraordinary difference in so many lives was one of the reasons he kept showing up. Dedicated staff like Jonas and Margaret are toiling away across Malawi. At the onset of the rollout, 60 facilities in the public sector were chosen as scale-up sites and accredited by the HIV Unit and the Ministry of Health (Libamba et al. 2007). Other facilities, both in the public and private sectors, became ART providers over the next few years. In addition, health facilities that had provided ART services before the initiation of the national policy followed suit and joined the standardized program (Libamba et al. 2007; Van Oosterhout et al. 2007). In this way, the number of facilities providing ART kept growing. By December 2013, 689 health facilities providing ART were staffed primarily with clinical officers like Jonas and nurses like Margaret (Government of Malawi 2014). It is fair to assume that most of these facilities struggle with the same understaffing problems described by Jonas. Gift, another clinical officer at the AIDS clinic, explained to me the improvements to the system he thinks are necessary: Train more health workers and decentralize this program to health centers. I think that can create…that can be good for us… Because some people they sit at the top but they don’t have the daily experiences like you have, and you are here every day. They don’t understand the concerns. What concerns? That we work under pressure, so we ask that maybe they should employ more, so that there will be a bigger list of employees of health workers, to match up the already big number of patients. When you started to work here, or when you got the training for ART, did you know that there was going to be so much pressure? Yes I did, because… [laughing] nobody told me, but I knew because of the magnitude of the problem. Is it more pressure or less pressure than what you thought it would be? More pressure… There is a need to train more. Gift’s experience of delivering care in a short-staffed environment and his call to train more healthcare professionals to address what he saw as the “magnitude of the problem” underscore some of the issues that will determine whether the ART rollout meets its goals. The need for an increased health workforce to effectively tackle the AIDS epidemic, as well as other health problems, is a challenge faced by many counties. Yet, any solution that addresses the need for more health professionals must grapple with the small pool of candidates available to draw on and the meager funding available to pay for training and salaries. Given this bind, other workforce solutions have taken root.

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Strategy 2: The Volunteer Solution Clearly, task shifting has relieved some of the pressure on Malawian physicians, but not nearly enough professional healthcare workers are employed to meet the needs of patients with HIV. Malawi, like many other countries struggling with the same problem, has increasingly responded to this void with a new strategy. At the district hospital HIV clinic where I was embedded, healthcare professionals paid by the Ministry of Health provided care. However, as a result of the massive shortage in the health workforce paired with budgetary limitations, volunteers delivered many of the health services offered by NGOs, as well as the government. This was true not only of remote rural communities, but of urban centers as well. Reliance on unpaid labor to care for the sick is hardly new. Family and community members have been involved in the care of sick loved ones since time immemorial. However, in recent decades, the scope of the phenomenon has changed. Unpaid care has turned from an informal social obligation into a formal mechanism that underlies many of the basic functions of global health systems. The incorporation of non-health professionals into healthcare was established with the Declaration of Primary Health Care in Alma-Ata. The comprehensive approach spearheaded by the declaration argued for broad community participation, as well as multidimensional and intersectorial involvement (Brown et al. 2006). Emphasizing preventative services such as sanitation and immunization, and promoting maternal and child health services administered by cadres of paraprofessionals backed by a strong referral system, the declaration envisioned primary healthcare systems based on models of socialized healthcare ( Janes 2004). However, the notion of broad cadres of paraprofessional community health workers took an unexpected turn in ensuing decades; the reliance on paraprofessionals remained, but the focus shifted from formal employees to unpaid volunteers. As global health programs have grown exponentially, those involved in international health work have been “socialized for scarcity,” trained to accept as a given that this type of work will always be under-resourced (Greene et al. 2013). As a result, global health interventions are almost always designed with the expectation of limited budgets, and with an extreme focus on cost-benefit considerations. Health programs have responded to workforce shortages and skimpy budgets by recruiting unpaid volunteers to serve as health workers. Under the guise of limited resources and the need to rapidly expand the health workforce in order to provide care, as well as an increasingly popular ideology of participation that encourages local communities to take responsibility for the health of their members, volunteer health workers have become a common phenomenon in many countries.3 To get a sense of the extent of the global phenomenon of volunteers, a survey conducted in 36 countries exploring whether participants had volunteered in some capacity for voluntary organizations (not necessarily in healthcare) during the prior 3 months, indicated that “volunteers comprised 44

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per cent of the work force of civil society organizations representing the equivalent of 20.8 million full-time workers” (United Nations Volunteers 2011:20). In fact, in many cases, the pervasive reliance on unpaid volunteers as health workers represents the financial basis for program sustainability, as it allows programs to save on the costs of labor (Maes 2012). The practice of using unpaid, or underpaid, volunteers as health workers has become so pervasive that it is one of the most common ways that health organizations expand their reach in many communities. NGOs often send volunteers into new communities and also recruit volunteers from these communities. Volunteerism has also become an acceptable form of engagement between programs and communities, and a potential stepping-stone for many rural residents seeking employment (Swidler and Watkins 2009). The role of volunteers in AIDS care delivery in Malawi is complicated. Although all health providers in ART clinics are formal employees of the Ministry of Health, many of the closely linked networks involved in patient support and welfare rely heavily on the work of volunteers. In general, volunteers carry out the services offered by community support organizations working with patients, as well as those provided by many of the NGOs providing home-based care and orphan care in the villages (Rosenthal 2012). Furthermore, much community health education, including education on HIV/AIDS prevention, is delivered by HSAs, who represent the lowest echelon of health worker and suffer from low pay and limited job security (Nyirenda and Flikke 2012). Thus, although the formal network of care is a professional one, it relies on the support of organizations that use volunteers or underpaid employees to augment the services it provides; the role of volunteers cannot be completely separated from the work of formal health services. In the African context, as written by Swidler, Turning informal obligations to family, clans or neighbors into more organizationally distinct clubs, projects or programs—as many development projects from micro-lending organizations to women’s cooperatives to community health projects do—has proven surprisingly successful. (Swidler 2006:276) However, as Swidler argues, the apparent success of harnessing unpaid labor to supply a workforce for health and welfare programming does not necessarily imply that international organizations and local volunteers understand the meaning and motivations of volunteering in the same way (2006). In fact, the term “volunteer” seems to hide all manner of sins in global health work, as volunteering in this context is not necessarily voluntary, as is discussed below, and the term itself has contradictory meanings. Thus, what is assumed to be a benign activity might actually be harmful to some participants. As Maes (2012:62) explains, “The loaded label of ‘volunteer’ obscures the complexity of volunteers’ motivations and the political-economic context.” Volunteering in this setting is very

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different from the Western form of volunteering, which is often a leisure activity of well-fed men and women. Thus, it is instructive to examine the motivations of the individuals participating in this system. How can organizations count on such a large pool of volunteers? In an environment of limited employment possibilities, volunteer work provides an opportunity to build a relationship with local and international organizations; occasional resources such as money for transportation, staff lunches, and per-diems; and hope for an opportunity to one day join the organization as a full-time, paid employee (Maes 2012; Maes and Kalofonos 2013; Swidler 2006). Unfortunately, these expectations, although encouraged by the discourse of many of the organizations, are not necessarily based in reality (Maes 2012). In many cases, the rhetoric of the importance of volunteer work hides the fact that the programs’ sustainability is based on unpaid labor and that hiring volunteers is unreasonable in the eyes of programmers. Furthermore, the threshold set by many programs for volunteer work is much lower than the bar for employment. Thus, an NGO might view a high school-educated rural candidate as a perfect candidate for a volunteer, but too uneducated for employment (Swidler and Watkins 2009). The motivations and needs of volunteers and semi-volunteers are similar throughout sub-Saharan Africa. The complexity of volunteer motivation, as well as the difficulties that arise from working with and relying on very poor volunteers, was articulated by David, a community worker for an international NGO that supports vulnerable children in the northern region of Malawi. David was, in many ways, the classic NGO worker: a professional welfare worker, city educated, and highly connected to the local and international NGO community. Based in a city, but working with both urban teenagers and rural children, David had a very sobering perspective on the work of NGOs in Malawi. His years of employment with various local and international NGOs left him very comfortable in the company of international aid workers and policymakers, but his view of these NGOs was not at all admiring or naive. He was never cynical and truly believed in the possibility of a better future. Yet, this did not mean that he had not experienced his share of disappointments from NGOs or was not frustrated with the system in which he worked. In one of our many conversations about working with volunteers, David told me: The community volunteers don’t get paid anything, nothing, not even a token of appreciation for anything. I would say [this is] one more thing that I would wish would change…I mean here you have somebody who is bearing gifts from one place to another and he has nothing. I believe that that is a tempting thing, because for example [if ] I am a volunteer, I have a child myself and then maybe he or she doesn’t have a school bag and then every other time I’m getting a school bag from this [NGO] to give it to this other child and yet in the process I benefit nothing. So I wish the program would have incentives, not necessarily money, but maybe once in a while you give a T-shirt to the volunteer or a T-shirt to the child of the

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volunteer. It’s good that they [community volunteers] are committed because they are doing work for their communities, but you shouldn’t forget that even the volunteers are [poor]…they have children who are as vulnerable as the children we are assisting. And later in the same conversation, David continued: I can’t go to the volunteer and make him stop cultivating his garden and make him write the letter [for the donors], yet he benefits nothing. Not like me, because I am going to get paid at the end of the month, but him, he has to stop doing his own work. Like now it’s the rainy season and they have to plant maize, and I can’t make him stop and do my letters.4 I mean it’s unfair, so what I am saying is [that] if I give him something, at least I would have some strength to act because he benefits from the whole process. … Basically I mean we are all individuals at the end of the day. David’s volunteers, and their children, were as hungry and as poor as the children they supported. Nevertheless, they were expected by the international NGO they worked for and its local office to volunteer their time and energy in service to the community and to the individuals singled out by the NGO as the most in need. Critiques of these practices by local community workers and volunteers are silenced on many occasions, as the language of volunteerism still rules much of the NGO discourse. Even David, who was critical of the reliance on very poor unpaid volunteers, concluded his critique of his NGO by saying: “I’m telling you, but I don’t have much of a voice, I am still doing my probation [as a new employee of the NGO]…” When volunteers’ expectations of compensation are articulated, or when community workers, such as David, demand remuneration for the work of their volunteers, there is a tendency to see their expectation of return as a form of corruption. To high-level staff and policymakers who take for granted the Western notion of volunteering as an unpaid practice and embrace the ideology of involving local communities in the care of their members, any expectation of benefits other than the Western idea of self-fulfillment seems distasteful. Indeed, this is one of the scenarios recognized by researchers in which local interpretations of global health programs differ from those of international policymakers (Smith 2001; Swidler 2006). In a Western context, expecting pay for volunteer work might seem problematic. To a poor rural volunteer in Malawi, the expectation of pay for work is central to survival. The ethical problems stemming from this reliance on volunteers in global health work, and the various motivations that volunteers express as driving their work, point to the conflicting, and sometimes unethical, actions of many health programs: On the one hand, their mission is to help people, but on the other hand, their practices may lead to the exploitation of members of the very communities they seek to serve. Framing health workers as volunteers is indeed more

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palatable to the international donor community, where the idea of community involvement has taken root as a sign of local ownership. It also allows programs to remain financially sustainable by not paying for most of the labor they employ. But, the term “volunteers” conflicts with many volunteers’ conception of themselves as professionals in search of employment opportunities. The use of volunteers frequently serves the agenda of international agencies and programs far better than it serves the local actors they rely on. In Malawi and beyond, the daily practice of volunteerism, as well as the idea of relying on unpaid labor to administer essential health services, is a double-edged sword. Reliance on volunteers creates a space for exploitative practices at the same time as it may provide opportunities, such as access to per diems and transport allowances, unattainable under any other circumstances. A cursory examination of health delivery in these settings underscores the precarious position of many volunteers, who are recruited from extremely poor communities that lack the resources to support their inhabitants, as part of the effort to save lives (Maes 2012; Maes and Kalofonos 2013; Swidler 2006). I argue that a healthcare system’s success, as well as a healthcare delivery infrastructure’s sustainability, is jeopardized by the conflicting positions of healthcare programs and their staff. The construction of a system that is based on the exploitation of this new underclass of health providers may be a short-term solution to the health workforce shortage. However, an ethical healthcare system that keeps its workers satisfied and enthusiastic will be a more successful long-term solution in both ethical and practical terms. Workers’ satisfaction is important not only to the workforce, but also to patients. A professional and committed workforce is the backbone of a stronger health system. Creating such a system in the current funding climate while maintaining (or improving) current levels of service represents one of the great challenges facing global health at present.

Strategy 3: Simplified Protocols Simplified protocols were at the heart of the global ART scale-up effort as envisioned by the 3 by 5 Initiative. Simplified procedures allow cadres of health workers with less training to perform essential tasks in shorter clinical interactions; therefore, strategy 3 goes hand in hand with strategy 1. International policymakers designed these clear and easy-to-follow protocols to assist countries in simplifying and standardizing local treatment regimes (Battistella Nemes et al. 2006). In Malawi, as in many other countries, these simplified and standardized treatment protocols provide the basis for HIV treatment. At the time of my research, in addition to the protocol defining first-line drugs, one of the most important simplified protocols, which will be discussed at length in the next chapter, was the one defining the parameters for treatment initiation. By basing the decision to initiate treatment on clinical presentation (i.e., the symptoms an HIV-positive patient presents), providers circumvented the need for expensive, and often unavailable, blood tests or specialized clinical expertise. Freeing

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healthcare providers of the need to rely on laboratory testing and specialists when making treatment decisions was probably the most important facilitator of the rollout process, making treatment accessible to a large population in a system that lacked the infrastructure and workforce needed to make test-based decisions.

Simplified Protocols: Not So Simple in Practice In the contested and ever-changing world of HIV treatment guidelines, following an algorithm is not always easy. One area in which standards of care and guidelines were in flux at the time I was at the clinic was the identification and treatment of newborns and babies who might be HIV positive, and the recommended feeding practices for this vulnerable group. In this less-than-ideal treatment environment, decisions made by the staff about the care of newborns and babies were often impaired by the movement of patients between different providers, lack of access to medication or supporting provisions (such as baby formula), and ever-changing international guidelines. For example, as a rule, care for HIV-positive pregnant women through delivery was overseen by the antenatal clinic, as part of its Prevention of MotherTo-Child Transmission (PMTCT) program. During prenatal visits, expectant mothers were encouraged to get tested for HIV. If the results of the test were positive, they were treated during pregnancy and delivery according to the general treatment protocols. After delivery, which was monitored and included a course of single-dose nevirapine to both mother and child (WHO 2004), women were referred to the ART clinic for continuing care and follow-up.5 The care transition between clinics was not always smooth. First, the mother had to schedule an appointment and actually show up at the ART clinic. At the time, it was completely up to mothers to continue treatment. Given the long distances and large amounts of time involved in clinic visits, many new mothers are understandably lost to follow-up. Second, a mother’s status did not necessarily determine the HIV status of and appropriate course of treatment for her baby. Whether a baby is born HIV positive or not, blood tests show the presence of HIV antibodies acquired through the mother’s immune system. Therefore, without virological testing, a baby’s HIV status cannot be determined during the first months of his or her life. As a result, when it comes to testing, treatment, and feeding, babies born to HIV-positive mothers are assigned to a category known as “exposed infants.” Exposed infants are defined as “infants and children born to mothers living with HIV until HIV infection in the infant or child is reliably excluded and the infant or child is no longer exposed through breastfeeding” (WHO 2006b:5). Infants leave this category either when HIV infection is diagnosed by a positive virological test conducted 6 weeks after complete cessation of breastfeeding or when HIV infection is excluded by negative HIV antibody testing after the age of 18 months, and at least 6 weeks after the complete cessation of breastfeeding (WHO 2006b). When virological testing is unavailable, or when the mother’s

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HIV status is unknown or unclear, care for babies and infants relies heavily on clinical follow-up and strict adherence to clinical guidelines. These somewhat confusing protocols are difficult to manage for short-staffed clinics. Both the PMTCT team at the antenatal clinic and the ART clinic team suffered from short staffing; nurses found it hard to follow all new HIV-positive mothers and their exposed babies. Limited staff and funding precluded the possibility of developing a specialized team to focus on exposed babies, and under these conditions, active case finding was impossible. Every woman who arrived at the clinic with a referral from the prenatal clinic was simultaneously a small victory and a cause for concern. On the one hand, the nurses were aware of the loss to follow-up that occurs between the antenatal clinic and the ART clinic; thus, every woman who made it to the clinic was cause for celebration. However, these women also presented a challenge for the clinic: With virological testing unavailable, nurses had to usher these women into a period of uncertainty about their baby’s HIV status, a painful experience for both mothers and providers. This common feeling was voiced by one of the nurses who said, after examining a mother and an exposed baby, “I’m not sure I helped her.” These guidelines, intended to be simple, did not necessarily help clinicians deliver care they were satisfied with. Another example of simplified guidelines that are not simple to use in practice focuses on infant feeding. Because of the risk of HIV being transmitted from mother to child through breastfeeding, the most appropriate feeding practice for babies with HIV-positive mothers has been the center of debate for many years. In areas with scarce resources and limited access to baby formula and clean water, providers and parents must “balance the risk of infants acquiring HIV through breast milk with the higher risk of death from causes other than HIV, in particular malnutrition and serious illnesses such as diarrhoea, among non-breastfed infants” (WHO 2010:16). In 2008–2009, feeding recommendations in the HIV clinic I worked in followed the guidelines published by the WHO in 2006 (WHO 2006b). The feeding recommendations acknowledged the risk of a mother transmitting HIV to her child through breastfeeding. As a result, health providers were encouraged to focus on the individual circumstances of the mother; they were told to explain all the available options and the risk associated with each. These international guidelines did not encourage countries to follow a set feeding strategy, but exclusive breastfeeding up to the age of 6 months was recommended for cases in which baby formula was not feasible. Moreover, the 2006 guidelines recommended providing ARVs to pregnant women and new mothers only on the basis of maternal clinical need and local availability; the guidelines for initiating treatment did not differ for pregnant or breastfeeding women, and the benefits of ART for the prevention of vertical transmission from mother to child did not enter into the treatment algorithm. Because baby formula was not available to most mothers, and when it was the issue of unclean water was a real risk, an alternative to breastfeeding did not

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really exist for most women at the clinic. At the same time, these women were not prescribed ART unless their own HIV status, as evidenced by their clinical presentation, met initiation guidelines. Moreover, the recommendation that health providers should explain all of the available options and the risk associated with each to mothers who were mostly uneducated, in a very brief interaction dictated by the long lines waiting outside the treatment room, posed a real difficulty to most providers. Thus, this simplified protocol was not so simple in practice. By the end of 2008 and the beginning of 2009, new evidence made it clear that the current guidelines did not necessarily protect babies, and the medical community knew that new and improved guidelines were right around the corner. The most important update to the new guidelines was the call to balance HIV prevention with other causes of infant mortality, such as malnutrition and diarrheal infections. While acknowledging the risks of HIV transmission through breastfeeding, the new guidelines addressed the concern that replacement feeding could put children at risk for other, no less prevalent, causes of death. As a result, although health providers were encouraged to provide patients with all of the relevant information, exclusive breastfeeding for the first 6 months was recommended whether the mother was on ART or not. Importantly, the new guidelines focused on providing ART to pregnant women and nursing mothers, not only based on their own clinical needs, but also as a measure to prevent vertical transmission. In addition, the new guidelines recommended that countries create specific national and subnational guidelines accounting for local variation in practice and available resources such as baby formula, clean water, and access to ART (WHO 2010). Aware of the new international policy changes underway, as well as the new national guidelines that would follow, nurses and clinical officers found themselves practicing in anticipation of them. Although they now knew better, they were still saddled with old guidelines and confusing definitions of exposure and levels of risk in newborns. They were ordered to continue to follow the old guidelines, even though they knew these guidelines put their patients at risk. This led to a situation that was demoralizing for providers and dangerous for mother-infant pairs. In addition, since the old guidelines did not include country-­specific recommendations, the instruction to focus on the individual circumstances of the mother made the clinical interaction even more complicated, especially with limited staff and time. Thus, when a mother and newborn duo appeared at the clinic, the nurse or clinical officer had to determine if the baby was HIV exposed—or, in older babies, HIV positive—and what was the most appropriate feeding recommendation for the mother. To make things even more complicated, mothers did not always arrive at the clinic directly after delivery, continuity of care was questionable at best, and the clinic did not have formula to give mothers who were not breastfeeding. On more than one occasion, as we were updating clinic logbooks and organizing the treatment room at the end of the day, nurses shared their concerns about

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treatment decisions they had made regarding the care of an exposed baby; they were not really sure what should have been done. They had to make decisions quickly, more often than not without supervision or advice, and with long lines of patients waiting outside the door. The complicated demands of the feeding guidelines, when applied to a short clinical interaction, put added stress on both the mothers and the providers. Thus, staffing shortages exacerbated the problems caused by imperfect guidelines. As in other countries, simplified and standardized treatment protocols have been essential for the rollout of ART in Malawi. Without these procedures, it would have been impossible to extend care to hundreds of thousands of people in a system that does not have the infrastructure to rely on laboratory testing and complex procedures. However, simplified and standardized treatment protocols are not a magic bullet, and healthcare workers find following the current guidelines challenging and difficult. As the cases of treating and feeding exposed babies have shown, protocols are especially hard to follow when special (and especially vulnerable) patient populations are concerned. Some of these challenges are inherent to the use of treatment protocols. Take, for example, the frequent changes in protocols that frustrate clinicians. As scientific data accumulate, protocols must change to improve treatment outcomes; these changes are crucial to healthcare delivery, part of the inevitable progress in care. That said, some of the difficulty in following guidelines could be avoided by providing adequate staff and funding or revising recommendations to better reflect practice conditions. Confusing definitions, looming changes that take a long time to come into effect, and the sheer pressure under which many healthcare providers in resource-limited settings practice—all represent obstacles that make even simplified and standardized protocols hard to follow at times. Clearly, simplified and standardized protocols benefit healthcare delivery, but for maximum effect, such protocols should reflect the realities of the settings in which they are practiced.

National Strategies to Deal with the Healthcare Shortage: Pediatric HIV Having discussed the strengths and limitations of the three strategies that Malawi has employed to address the national shortage of healthcare workers, we now examine how these strategies play out in the daily HIV care delivered by clinics to a special group of patients: children. At the time of this study, the available data indicated that 2.3 million children were living with HIV worldwide. In sub-­Saharan Africa, HIV/AIDS deaths accounted for 6% of all deaths of children under the age of 5 years. In most cases, HIV was acquired from the mother; many of the cases could have been prevented if mothers had had access to PMTCT programs (WHO 2006a). Without treatment, HIV in children is aggressive; 50% of infected infants die before reaching the age of 2 years, and 80% die before reaching the age of 5 years. By contrast, when treatment is timely, children usually enjoy positive outcomes. In high-income countries where treatment is readily

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available, more than 80% of infected children survive. In Malawi, at the time of the study, an estimated 140,000 children between the ages of 0 and 14 were HIV positive, representing over 10% of the HIV-positive population in the country (WHO 2015a). However, children represented only 5% of the treated population in Malawi, indicating that many of them were not being served by the healthcare system (WHO 2006c). The staff at the HIV clinic were thrilled to begin offering and developing pediatric services, and although it took 3 years from the time the clinic opened before a more structured program was in place, every visit from an international specialist (such as Dr. Jonathan, in the previous chapter) was gratefully acknowledged as an opportunity to improve the pediatric care the clinic provided. Commenting on her feelings toward pediatric care at the clinic, Grace, a senior nurse, said: You know children, they do respond quite well to treatment if there are no other complications. I like this place because you see that maybe somebody wasn’t moving, wasn’t walking, wasn’t talking, but after taking maybe the starter pack [the first phase of treatment] he comes the second time and you see that he is stable and he can talk. And usually when we meet, maybe in the marketplace, they are very happy when they see you. Even when you meet them in the villages they are very happy, and they can greet you in a way that people would wonder “What’s that? What is going on?” [laughing]. In a clinic that saw mostly adult patients, many of them very ill, the staff embraced the presence of children. Although the care of sick children is always heartbreaking for healthcare professionals, the children who were doing well on treatment were often a treat for the staff. Growing, gaining weight, starting school, and running around-all the things that children do, lightened the atmosphere at the clinic. However, in rural Malawi, providing pediatric ART is a challenge. Summarizing the difficulties, a WHO report published in 2006 noted: Significant obstacles to scaling up paediatric care remain, including limited screening for HIV, a lack of affordable simple diagnostic testing technologies, a lack of human capacity, insufficient advocacy and understanding that ART is efficacious in children, limited experience with simplified standardized treatment guidelines, and a lack of affordable practicable paediatric antiretroviral (ARV) formulations. Consequently, far too few ­children have been started on ART in resource-limited settings. (WHO 2006a:1) As in other countries in the region, every step involved in a comprehensive pediatric ART rollout, from screening to diagnostic capacity to pediatric specialists to

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pediatric ART formulations, presents a problem. Shortages in the health workforce exacerbate these challenges. In addition to the overall staff shortage, the clinic where I worked, like many other ART clinics, lacked healthcare workers with the training required for specialized pediatric HIV care. To support pediatric care, a team of American pediatricians, including Dr. Jonathan, visited the clinic periodically and established “pediatric Tuesdays.” On Tuesdays, priority was given to pediatric patients, and the foreign physicians provided training and support to the local nurses and clinical officers. However, because of the volume of patients at the clinic, it was impossible to limit “pediatric Tuesdays” to children only or to avoid seeing children on days when the American pediatricians were not present.6 Thus, although the clinic’s staff were attempting to improve pediatric care, they were unable to address the many unique considerations inherent in treating children, and they felt they did not receive enough guidance from international recommendations. In many cases, when it came to children, clinicians had to figure things out on their own.

Diagnosing HIV Late In 2005, there were 2.3 million children living with HIV worldwide, and each day, 1500 more children under the age of 15 years become HIV positive. It has been estimated that 90% of these children live in sub-Saharan Africa, in countries such as Malawi. For children, the most common way of contracting HIV is vertical, from mother to child; thus, most of these infections could have been prevented if their mothers had received appropriate care in time (WHO 2006c). However, preventing vertical transmission is not the only challenge associated with delivering HIV care to children. Screening and diagnosing children also poses major difficulties. It has been estimated that 70% of the children who are HIV positive do not receive the treatment they require. Causes for late diagnosis in children vary from loss to follow-up after birth to limited infrastructure and staff at clinics to a lack of tools to support active case finding (Ahmed et al. 2013). The late diagnosis of HIV in children is not unique to a specific clinic—it is common throughout Africa (WHO 2006c). It is not a sign of neglect or malpractice, but a result of difficult working conditions: long hours, short-staffed health facilities, and a lack of resources dedicated to community follow-up and active case finding. At the clinic where I worked, for example, providers did not always find the time during short appointments to talk to adult patients about their untested children, especially as such conversations often require lengthy and sensitive negotiations. The only “automatic” procedure regarding child diagnosis was the post-delivery follow-up, in which mothers were told to report to the HIV clinic for future care. Even in those visits, providers did not always ask about other children in the family, tending to focus on the newborn in front of them. At times, nurses would conclude a clinical interaction with a child by reminding his or her parents to bring their other children to get tested. An appointment would be set up, and the parents would assure the nurse that they would follow

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through. But, when the parents walked out of the room, the nurses would comment on the numerous times they have had the same exact conversation to no avail. This was not because the parents did not care for or love their children, but, as the nurses assured me, it was because the clinic was far from their homes, transportation to the clinic was expensive, and the thought of another sick child was terrifying. The clinic’s limited resources prevented nurses and clinical officers from following up with frightened and exhausted parents to make sure that they brought their children on future visits. The clinic was also unable to support these parents by paying for their transportation fees or conducting home visits.

Math under Pressure When vertical transmission of HIV between mother and child is not averted through the PMTCT program, a child must receive ART—but ensuring that this happens is a challenge. ART is highly effective in children, especially when initiated in a timely manner, allowing them to grow normally, with a functioning immune system (WHO 2006c). However, the streamlined protocols and fixed-dose pill combinations that simplify treatment in adults are not commonly available for children. Efforts to simplify pediatric HIV care and promote the development of fixed-dose combinations for children (WHO 2008a) have lagged, partly because the small potential pediatric market is unattractive to drug manufacturers (WHO 2006c). When pediatric fixed-dose combinations did exist, they were largely unaffordable to both private consumers and the public sector. The streamlined guidelines available for pediatric care regarded children simply as patients of a smaller size and did not necessarily attend to their special needs. Clinical interactions with children are inherently different from interactions with adults and tend to require more time and effort. In these cases, the standardized clinical interaction designed for adult patients is not necessarily helpful. For example, one morning in the clinic, a nurse had a hard time getting 5-yearold Leoni to sit in one place long enough to examine a wound that seemed to be healing slowly. Leoni was just not the kind of girl who sits still. Similarly, another patient, 2-year-old Joel, did not want any of the nurses to touch him to examine what his mother thought might be an unusual rash. He was very vocal about his displeasure, holding tightly to his mother and refusing any attempt by a nurse to get close. Care for pediatric patients did not just involve running around after feisty little girls or convincing crying babies to let a nurse approach them, however; it was also about providing the correct dosage of medications. With adult patients, the standard was one pill twice a day—a relatively easy regimen. With pediatric patients, nurses had to consult the guidelines to calculate the required dosage according to weight. With doses measured in quarters and halves of pills, and different dosages for different times of the day, prescribing for children required quite a bit of math under pressure. For example, according to the guidelines, a child between 5 and 8 kg should receive half a pill in the morning and a quarter

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of a pill in the evening. In the absence of a syrup form or another delivery mechanism suited for children, adult pills had to be broken according to need. Furthermore, as the guidelines instructed clinicians to provide enough pills for 4 weeks, nurses had to calculate how many pills should be given to the parents at each visit. In the case of a 5–8 kg child, 21 pills were required. After talking to the parents or guardians, examining a child who was often not happy about being trapped in an exam room after a stressful journey, updating the records, and doing rapid dosage calculations and arranging pills in little plastic bags, nurses had to advise the guardians, many of whom were illiterate and had limited numeracy skills and little understanding of pharmacology, about the importance of differentiating between a quarter and a half of a pill. However, limited in number, the staff at the clinic could spend very little time with each parent and child, and were under constant pressure to maximize the number of patients they saw. As a result, this elaborate process of pediatric care could not take more than a few minutes. After these dense and intense interactions, nurses could not be blamed for forgetting to ask if a child had siblings who should be brought to the clinic to get tested or attend to any of a child’s less pressing medical and emotional needs. As in the other scenarios described above, the clinic’s staff had to provide the best care possible under less than optimal circumstances. The guidelines were confusing, the clinic short-staffed, and even the most basic tasks were made cumbersome by inadequate resources. Importantly, with the scale-up of ART services, the pediatric patient population will continue to grow in the immediate future. Thus, appropriate measures for improving HIV care for children should be considered. In addition to extra staff and more pediatric training, a move to pediatric-specific medications would reduce the need for calculating under pressure, easing pediatric visits, and improving patient outcomes.

The Teenage Challenge Flora was the quintessential 13-year-old girl. She was clever and lively, and would look away embarrassed when asked if she had a boyfriend. Flora was also a patient at the HIV clinic where I worked. In many ways, she represented one of the important challenges of the future of pediatric care. As a teenage patient, she was part of a rare cohort; most children are diagnosed at birth or at an early age, and until recently, they rarely received the care they needed to survive. As pediatric care expands as a result of the rollout, however, more and more children will reach Flora’s age, confronting providers and parents with a new set of challenges. Like other teenagers, Flora was preoccupied with her friends and social circle. She was undecided about disclosing her HIV status to her friends, and she was on the verge of being old enough to ignore adult advice on the matter. The nurses at the clinic knew that complicated questions about sex and HIV were looming in the near future. This was a conversation Flora’s parents were dreading, and the nurses were somewhat hesitant about it as well, as they did not have much

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experience with children Flora’s age. They could converse with an adult about safe sex in their sleep, but a similar conversation with a teenager was a whole different animal. Flora and her peers pose a new set of challenges to health professionals. ­A lthough the growth of this cohort of teenagers on ART represents a measure of success in the rollout of treatment, it also means that their unique needs must be addressed. However, shortages in the health workforce mean that little or no training focuses on the needs of this patient population. In addition, staff shortages mean that little time is dedicated to the social, emotional, and behavioral wellness of adolescents. Flora and her peers could be the first generation of children treated for HIV, a generation that will grow up in a society that is not devastated by death. But, as things stand, lack of attention to their needs, HIV-related and otherwise, might represent a missed opportunity to give them the start in life they need to begin to repair the fractured world they have inherited. Leoni, Joel, and Flora are only three examples of pediatric patients. They are alive due to the ART rollout, which was made possible by Malawi’s strategies for delivering care with a limited number of health professionals. Thanks to their treatment, they are growing and developing like the children around them. However, as discussed, pediatric HIV care suffers from some very basic challenges. First, children need to get to the clinic. Unable to do it on their own, any service aimed at children must address the needs of their caregivers. Second, pediatric patients have different needs than adults, and these needs change as they grow up. Lastly, children lack the intellectual and emotional maturity to adhere to treatment on their own. Current pediatric care guidelines often address the clinical and technical procedures required for effective treatment, but these processes are typically much more challenging when applied to children than they are when applied to adults. The complex social and psychological needs of children are harder to address than the needs of adults as part of a large-scale, national rollout. All of these challenges are exacerbated by a staffing shortage that limits providers’ ability to spend time with each child, support parents, and receive the training needed to provide better pediatric HIV care.

Conclusion The scale-up of ART services in Malawi has triggered policies aimed at expanding the capacity of the health workforce. This increase in the workforce has facilitated access to ART by expanding the services provided to patients. However, the need to cope with an ever-growing patient population, including the HIV-positive patients being treated now, who will require care for the rest of their lives, as well as all those patients diagnosed in the future, will be a major challenge faced by the Malawian healthcare system in the future (Rasschaert et al. 2011). Supplying adequate care with a limited number of healthcare providers is a problem that is not going to go away. Most healthcare workers feel that they are giving more than their all, and most national policymakers have thrown

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themselves into the ART rollout as well—even so, the size of the patient population will continue to grow, and with it, the pressure they feel. As for any massive scale-up of services, the biggest challenge will continue to be balancing the goal of access, in this case universal access, with quality of care (Lowrance et al. 2008). Based on my observations and conversations with healthcare workers, I would like to propose a few suggestions for lightening the load of healthcare providers and improving the care that patients receive.

Better Systems of Support Global health policy might be on the right track when it comes to solving health workforce shortages with task shifting and simplified protocols, and policymakers are currently exploring more creative strategies for task shifting, such as turning volunteers into formally employed paid community health workers (Mukherjee and Eustache 2007; Zachariah et al. 2009). Nevertheless, it may be beneficial to consider what can be done in the short term to support healthcare providers until new policy developments catch up with everyday life. One short-term strategy could be to provide healthcare professionals practicing in poorly resourced areas with formal structures of support. From a senior provider who can help a junior provider navigate treatment protocols, to specialized training that provides a better understanding of the global context of international policies, such support could help providers cope with the stresses caused by an under-resourced and understaffed health system. The team of American pediatricians promoting the “pediatric Tuesdays” initiative at the ART clinic is one such example. This initiative was a recent development at the clinic, and it was limited in scope. However, even in the short period that the program had been operating, providers were already feeling better equipped to deal with pediatric patients. They were less stressed, and they approached the visiting physicians for help even for cases that were presented outside of “pediatric Tuesdays.” As described, the providers at the clinic still felt overwhelmed when faced with the demands of pediatric care, but the preliminary success of this program could inspire its expansion or the institution of similar programs at other clinics.

Better, Less Confusing Protocols In the cases of both newborn and pediatric HIV care, up-to-date guidelines were much desired, as healthcare providers were aware of new evidence that had accumulated and the unmet needs of their patient population. Yet, because the guidelines were not clear and because there was a lack of support, providers struggled to adapt to the new protocols. For example, the feeding recommendations that avoided providing area-specific recommendations left providers with vague and unrealistic instructions to discuss all available possibilities and their associated risks with patients. More localized guidelines attuned to the needs and resources of local populations might have been more helpful. Moreover, standardized

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clinical guidelines that were structured to streamline treatment and allow for the scale-up of ART services in the country were often met with a lack of adequate resources at the clinic level, such as baby formula. Without the resources and support needed to implement protocols effectively, much of the promise that simplified protocols hold for improving healthcare delivery remains unfulfilled.

A Critical Look at Volunteerism As efforts to roll out ART in extremely resource-poor environments have gained momentum, the need to create new cadres of health professionals has led to the development of an underclass of volunteer healthcare providers. Given the resources of the multibillion-dollar global health industry, we should ask why the people who provide much of the HIV care in Malawi and many other countries go hungry and unpaid by the global health programs that depend on them. Although task shifting may relieve some of the stress on the health system, the problem of enlisting volunteers instead of paid workers should be addressed. Volunteerism is a double-edged sword: On the one hand, it relies on exploitative practices without providing sustainable employment, and on the other hand, it provides volunteers with access to material resources such as per diem payments and lunch allowances that are otherwise unattainable. In resource-limited ­settings, volunteerism allows programs to claim sustainable practices with limited budgets: They offload much of the financial brunt of their programming on unpaid volunteers (Maes 2012). A more just system would recognize the monetary worth of the work that “volunteers” do and incorporate compensation into its programming. Acknowledging the hidden costs of the workforce would force programs to plan more ethically and account for the real cost of the work being done. In truth, compensating workers for their time and effort is likely to benefit the programs that employ them, and the patients they serve, as much as the workers themselves. A formal employment arrangement would solidify the professional expectations that organizations have of their workforce, potentially reducing absenteeism and improving the quality of employees’ work. Although some organizations may find the idea of paying for the labor that they now get for free unappealing, compensating all employees and formalizing their responsibilities would contribute to economic stability in the communities the organizations serve, a cause that many programs ostensibly support. A shift toward paid labor will require financial reorganization on the part of health programs and a shift in attitudes and behaviors on the part of donors. However, a departure from the “socialization of scarcity,” in which only the lower echelons of health workers are expected to bear the brunt of scarcity, is long overdue. Clearly, national policies are forced to contend with realities created by global policies and forces. Decisions made at the national level then join with these global forces to determine what healthcare delivery is like on the ground. Malawi has been remarkably progressive in not only establishing universal access to

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ART, but also acknowledging the importance to this effort of strengthening the national health workforce. In confronting a severe staffing shortage, it has developed a number of strategies to play the hand it has been dealt by global forces, and these strategies have allowed expansion of HIV services across the country. However, further improving staffing availability and training has the potential to dramatically change the quality of AIDS care in Malawi. According to the WHO, the ART rollout in Malawi has reached over 500,000 patients in 2015, with a 12-month retention rate of 77% (WHO 2015a). This is undoubtedly a tremendous achievement, especially when considering Malawi’s starting point in the early 2000s, when only a handful of people were on treatment (Ministry of Health 2005).7 However, these impressive figures represent only 50% of the Malawians in need of ART (WHO 2015a). Furthermore, the latest scientific evidence is pointing to the clinical benefits of shifting toward a “test and treat” strategy in which antiretroviral treatment is initiated as soon as a patient is diagnosed, regardless of CD4 count. A shift to a “test and treat” regime, which is now the official goal of the WHO (WHO 2015b), would designate all HIV-positive people eligible for treatment, thus increasing the size of the potential patient population. Such an increase will require more healthcare workers, not only to initiate and support treatment, but also to actively find cases and provide adequate follow-up. Moreover, these healthcare workers will have to be well trained and supported by the appropriate treatment protocols. Any future programming must therefore sustain and augment current efforts in order to face the challenges to come. Although the government of Malawi has been able to capitalize on funding for HIV to improve the health of its people, it is also concerned with improving the healthcare system overall. As we know from other regions of the world, even with the new policies and support for service expansion, spillover effects (i.e., those that affect the healthcare system as a whole) are not automatic and require intentional effort (Closser et al. 2014). Positive spillover effects from the scale-up of ART will require training new cadres of health workers to deliver a broad range of services that go beyond ART. Promising possibilities include expanding PMTCT programs to include services to siblings, using surveillance systems built for ART to monitor other health conditions, and retooling hospital laboratories to support more than just HIV/AIDS care. These are all expensive suggestions, but without them, the opportunity to leverage ART to improve the health of the general population will be missed. With the tremendous investments already being made, we cannot afford to miss such an opportunity.

Notes 1 Claire Wendland’s ethnography (2010) provides insight into the process of medical training for physicians in Malawi. It explores not only the contradictions arising from medical training in resource-limited settings, but also the challenges of imagining and planning a professional future as physicians under such circumstances. 2 In fact, in this rural district hospital, only two MDs roamed the halls; one of them was the hospital director and district medical officer, and the other a surgeon. Considering

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the extreme shortage of physicians in the country, however, having two physicians at a rural district hospital was considered a huge victory by both patients and healthcare providers. 3 The extent of the volunteer phenomenon in global health is widespread; however, since many of the volunteers are not officially employed or registered, it would be almost impossible to accurately estimate their numbers. 4 Children who are the beneficiaries of international donations delivered through NGOs are often prompted to write thank-you notes to donors abroad with the help of community volunteers. In many programs, international donors are “assigned” a child they follow over the years, with whom they communicate through letters. Although the funds raised from a specific international donor may not necessarily benefit a specific child, such letter writing is widely practiced in NGOs. 5 In 2011, this policy changed from traditional PMTCT initiation and treatment, based on clinical staging or CD4 counts as described in this book, to a “test and treat” approach (Option B+), in which treatment is initiated without a CD4 count, solely on the basis of the mother’s HIV diagnosis. 6 Children were often seen at the clinic, not necessarily on “pediatric Tuesdays.” However, given the long travel time to the clinic and the lack of childcare available to parents, it was not always clear to the staff if the children present were potential patients. Parents were often reluctant to have their children tested. Without the training required for such interactions with parents and children, the staff had to find ways to receive parental consent in a non-confrontational manner, which could be a complicated task in and of itself. 7 In the early 2000s, access to ART was so limited and fragmented that no accurate statistics exist to capture the number of people who were receiving treatment in private and public facilities. However, a Ministry of Health report published in 2005 estimated that in 2004 between 3000 and 4000 people were treated in public-sector facilities countywide (Ministry of Health 2005).

References Ahmed, S., M. H. Kim, N. Sugandhi, B. R. Phelps, R. Sabelli, M. O. Diallo, P. Young, D. Duncan, and S. E. Kellerman. 2013. Beyond early infant diagnosis: Case finding strategies for identification of HIV-infected infants and children. AIDS 27(02):S235–S245. Battistella Nemes, M. I., J. Beaudoin, S. Conway, G. W. Kivumbi, A. Skjelmerud, and U. Vogel. 2006. Evaluation of WHO’s Contribution to “3 by 5”: Main Report World Health Organization. Bemelmans, M., T. Van Den Akker, N. Ford, M. Philips, R. Zachariah, A. D. Harries, E. J. Schouten, K. Hermann, B. Mwagomba, and M. Massaquoi. 2010. Providing universal access to antiretroviral therapy in Thyolo, Malawi through task shifting and decentralization of HIV/AIDS care. Tropical Medicine & International Health 15(12):1413–1420. Brown, T. M., M. Cueto, and E. Fee. 2006. The World Health Organization and the transition from “International” to “Global” Public Health. American Journal of Public Health 96(1):62–72. Brugha, R., J. Kadzandira, J. Simbaya, P. Dicker, V. Mwapasa, and A. Walsh. 2010. Health workforce responses to global health initiatives funding: A comparison of ­Malawi and Zambia. Human Resources for Health 8(1):19. Callaghan, M., N. Ford, and H. Schneider. 2010. A systematic review of task-shifting for HIV treatment and care in Africa. Human Resources for Health 8(1):8. Closser, S., K. Cox, T. M. Parris, R. M. Landis, J. Justice, R. Gopinath, K. Maes, H. B. Amaha, I. Z. Mohammed, A. M. Dukku, P. A. Omidian, E. Varley, P. Tedoff,

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A. D. Koon, L. Nyirazinyoye, M. A. Luck, W. F. Pont, V. Neergheen, A. Rosenthal, P. Nsubuga, N. Thacker, R. Jomma, and E. Nuttall. 2014. The impact of polio eradication on routine immunization and primary health care: A mixed-methods study. Journal of Infectious Diseases. doi: 10.1093/infdis/jit232. Ferradini, L., A. Jeannin, L. Pinoges, J. Izopet, D. Odhiambo, L. Mankhambo, G. Karungi, E. Szumilin, S. Balandine, G. Fedida, M. P. Carrieri, B. Spire, N. Ford, J.-M. Tassie, P. J. Guerin, and C. Brasher. 2006. Scaling up of highly active antiretroviral therapy in a rural district of Malawi: An effectiveness assessment. The Lancet 367(9519):1335–1342. Government of Malawi. 2014. Global AIDS Response Progress Report (GARPR): ­Malawi Progress Report for 2013. Greene, J., M. Thorp Basilico, H. Kim, and P. Farmer. 2013. Colonial Medicine and Its Legacies. In Reimagining Global Health: An Introduction. P. Farmer, J.Y. Kim, A. Kleinman, and M. Basilico, eds. Berkeley, CA: University of California Press. Janes, C. R. 2004. Going global in century XXI: Medical anthropology and the new primary health care. Human Organization 63(4):457–471. Lancet. 2008. Task shifting may prove key to tackling infectious diseases. The Lancet Infectious Diseases 8(2):81. Libamba, E., S. D. Makombe, A. D. Harries, E. J. Schouten, J. K. Yu, O. Pasulani, E. Mhango, J. Aberle-Grasse, M. Hochgesang, E. Limbambala, and D. Lungu. 2007. Malawi’s contribution to “3 by 5”: Achievements and challenges. Bulletin of the World Health Organization 85(2):156–160. Lowrance, D. W., S. Makombe, A. D. Harries, R. W. Shiraishi, M. Hochgesang, J. Aberle-Grasse, E. Libamba, E. Schouten, T. Ellerbrock, and K. Kamoto. 2008. A public health approach to rapid scale-up of antiretroviral treatment in Malawi during 2004–2006. Journal of Acquired Immune Deficiency Syndromes 49(3):287–293. doi:10.1097/QAI.0b013e3181893ef0. Maes, K. 2012. Voluntarism or labor exploitation? Harnessing the volunteer spirit to sustain AIDS treatment programs in urban Ethiopia. Human Organization 71(1):54–64. Maes, K., and I. Kalofonos. 2013. Becoming and remaining community health workers: Perspectives from Ethiopia and Mozambique. Social Science & Medicine 87:52–59. McCollum, E. D., G. A. Preidis, M. M. Kabue, E. B. M. Singogo, C. Mwansambo, P. N. Kazembe, and M. W. Kline. 2010. Task shifting routine inpatient pediatric HIV testing improves program outcomes in urban Malawi: A retrospective observational study. PLoS One 5(3):e9626. McCoy, D., B. McPake, and V. Mwapasa. 2008. The double burden of human resource and HIV crises: A case study of Malawi. Human Resources for Health 6(1):16. Ministry of Health. 2005. Treatment of AIDS: A five-year plan for provision of antiretroviral therapy and good management of HIV-related diseases to HIV-infected patients in Malawi 2006–2010. Mukherjee, J. S., and F. E. Eustache. 2007. Community health workers as a cornerstone for integrating HIV and primary healthcare. AIDS Care 19(Suppl. 1):73–82. Muula, A., J. Chipeta, S. Siziya, E. Rudatsikira, R. Mataya, and E. Kataika. 2007. ­Human resources requirements for highly active antiretroviral therapy scale-up in Malawi. BMC Health Services Research 7(1):208. Nyirenda, L., and R. Flikke. 2012. Frontline vaccinators and immunisation coverage in Malawi. Forum for Development Studies. doi:10.1080/08039410.2012.725676. Palmer, D. 2006. Tackling Malawi’s human resources crisis. Reproductive Health Matters 14(27):27–39.

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Philips, M., R. Zachariah, and S. Venis. 2008. Task shifting for antiretroviral treatment delivery in sub-Saharan Africa: Not a panacea. The Lancet 371(9613):682–684. Rasschaert, F., M. Pirard, M. Philips, R. Atun, E. Wouters, Y. Assefa, B. Criel, E. Schouten, and W. Van Damme. 2011. Positive spill-over effects of ART scale up on wider health systems development: Evidence from Ethiopia and Malawi. Journal of the International AIDS Society 14(1):1–10. Rosenthal, A. 2012. Weaving networks of responsibility: Community work in development programs in rural Malawi. Medical Anthropology 31(5):420–437. Smith, D. J. 2001. Kinship and corruption in contemporary Nigeria. Ethnos 66(3):344–364. Swidler, A. 2006. Syncretism and subversion in AIDS governance: How locals cope with global demands. International Affairs 82(2):269–284. Swidler, A., and S. C. Watkins. 2009. “Teach a man to fish”: The sustainability doctrine and its social consequences. World Development 37(7):1182–1196. Thorsen, V., A. Tharp, and T. Meguid. 2011. High rates of burnout among maternal health staff at a referral hospital in Malawi: A cross-sectional study. BMC Nursing 10(1):9. United Nations Volunteers. 2011. State of the World’s Volunteerism Report 2011: ­Universal Values for Global Well-being. United Nations. Van Oosterhout, J. J. G., J. K. Kumwenda, T. Hartung, B. Mhango, and E. E. ­Zijlstra. 2007. Can the initial success of the Malawi ART scale-up programme be s­ ustained? The example of Queen Elizabeth Central Hospital, Blantyre. AIDS Care 19(10):1241–1246. Wendland, C. L. 2010. A Heart for the Work: Journeys through an African Medical School. Chicago, IL: Chicago University Press. WHO. 2004. Antiretroviral Drugs for Treating Pregnant Women and Preventing HIV Infection in Infants: Guidelines on Care, Treatment and Support for Women Living with HIV/AIDS and Their Children in Resource-Constrained Settings. World Health Organization. ———. 2006a. Antiretroviral Therapy of HIV Infection in Infant and Children towards a Universal Access: Recommendations for a Public Health Approach. World Health Organization. ———. 2006b. Guidelines on Co-trimoxazol Prophylaxis for HIV-Related Infections among Children, Adolescents and Adults in Resource-Limited Settings: Recommendations for a Public Health Approach. World Health Organization. ———. 2006c. HIV in Children: The State of Affairs. Geneva: World Health Organization. ———. 2008a. Preferred Antiretroviral Medicines for Treating and Preventing HIV Infection in Younger Children: Report of the WHO Paediatric Antiretroviral Working Group. Geneva: World Health Organization. ———. 2008b. Task Shifting: Global Recommendations and Guidelines. World Health Organization. ———. 2010. Guidelines on HIV and Infant Feeding: Principles and Recommendations for Infant Feeding in the Context of HIV and a Summary of Evidence. World Health Organization. ———. 2015a. Global Health Observatory (GHO) Data. World Health Organization. ———. 2015b. Guideline on When to Start Antiretroviral Therapy and on Pre-exposure Prophylaxis for HIV. World Health Organization. Zachariah, R., N. Ford, M. Philips, S.Lynch, M. Massaquoi, V. Janssens, and A. D. Harries. 2009. Task shifting in HIV/AIDS: Opportunities, challenges and proposed actions for sub-Saharan Africa. Transactions of The Royal Society of Tropical Medicine and Hygiene 103(6):549–558.

4 Relationship Matters Patient and Healthcare Provider Experiences in an Antiretroviral Clinic

It was 10 a.m. on a Monday, and the clinic’s waiting room was overcrowded with patients and family members sitting on the benches, the floor, and the front balcony. The nurses and clinical officers were seeing patients in the treatment rooms, and Johnston, the clinic’s clerk, was issuing treatment cards (master-cards) to restless patients and answering their questions. Mrs. Phiri, a soft-spoken woman in her 50s who was always dressed in ­v illage attire,1 was helping Johnston orchestrate the seemingly disorganized mass of people in the waiting room. In her official capacity, Mrs. Phiri was the clinic’s cleaner, but, as everyone knew, her role at the clinic extended much further than mopping floors or arranging the waiting room. Mrs. Phiri had joined the clinic soon after it opened, when the previous cleaner moved away. She had also been one of the clinic’s first patients, at a time when the clinic was primarily serving hospital employees for lack of other patients. Before joining the clinic, she had been a cleaner in the pediatric ward, and the move to the ART clinic was overwhelming at the beginning; the volume of patients and the long hours were very different from what she was used to. After 3 months, however, she became used to the work at the clinic and started to see all the benefits it had. Although her official duties included cleaning the clinic and helping Johnston weigh patients and distribute master-cards, Mrs. Phiri also spent much of her day talking to patients, explaining procedures, discussing their fears and concerns, and guiding family members through the process of care. Very often, Mrs. Phiri took on the role of a mediator between ­patients and providers. Patients arrived mostly from the surrounding villages, whereas healthcare professionals were not only educated, but also

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often city-raised and of higher socioeconomic status. The divide between ­patients and providers was sometimes hard to overcome; often, patients were hesitant to directly address the nurses and clinical officers. Mrs. Phiri occupied a unique niche: She was not only a rural woman like many of the patients; she was also a healthcare professional working at the hospital. As Mrs. Phiri explained, Patients sometimes tell me their problems. What problems do patients tell you about? Most of the time, it’s those who missed their date of coming here. So before going there [the nurse’s room], they fear. So when they come to me, I tell them, “You should not fear, go and get the medication. If they [the nurses] ask you some questions or shout at you, 2 don’t worry, just receive medication and continue taking it.” In addition to her unofficial role as a connector and mediator in the clinic, Mrs. Phiri was closely linked to HIV-related activities outside its doors. She was also a fountain of knowledge when it came to support groups operating in various areas around the district. Indeed, as a patient herself, Mrs. Phiri was an activist in HIV support groups. Thus, patients at the clinic and in the surrounding villages approached Mrs. Phiri when they wanted to join a support group for people living with HIV. Explaining this role, she said: If there is a group that I know, and people that I know, I will tell the group that there are these people who want to form a group. So the existing group should tell the patients what to do, and then the new group should go to the District Commission [for financial support]. Mrs. Phiri’s activities were acknowledged by many of the patients we interviewed, who mentioned her as their first point of contact at the clinic. For many patients, Mrs. Phiri was the first provider they turned to and the one they trusted to help them navigate the world of treatment. Thus, although Mrs. Phiri’s official capacity was “just” a cleaner, in reality, she served as a translator between rural patients and upper-middle-class, ­often urban, providers. In her interactions with patients, Mrs. Phiri turned the waiting room into an informal consultation opportunity, providing patients an extra service and providers a bridge to their patients. With Mrs. Phiri around, the patients not only had a spotless clinic, but they also had an extended psychosocial support network that went well beyond the drugs they received.

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In this chapter, we shift from focusing on national policy to the daily facts of healthcare delivery in a district hospital.3 The daily interactions between patients and providers at the clinic captured the moments when global and national health policies, discussed in previous chapters, were distilled into human relationships. In those moments, healthcare providers’ desire to follow World Health Organization (WHO) recommendations and Ministry of Health guidelines was complicated by the need to provide ART within the constraints that shaped everyday life at the clinic. To watch this phenomenon in action, we return to the ART clinic we visited earlier in the book. Describing and analyzing not only the daily routines of the clinic and the people surrounding it, but also the interactions and clashes between the clinic and global and national institutions, this chapter touches upon the nitty-gritty, and sometimes unpleasant, details of healthcare delivery in a resource-limited setting and seeks to understand the practices, routines, and risks associated with providing and receiving treatment. Throughout, we document how healthcare is delivered through a dense network of relationships. These relationships are important to understand, because all directives from above filter through this network, sometimes for better, sometimes for worse. Figuring out how to strengthen the weak links in the network represents an important component of improving the delivery of HIV care in Malawi.

“What will you do when they stop?” Relationships at the clinic from the patients’ perspective Each clinic day was an ordeal for patients. They began lining up outside the locked clinic doors in the darkness of the early morning and waited hours for the clinic to open. Once inside, they waited some more, until the nurse could question them about their health and whether they were experiencing any side effects. On an easy day, the visit might end there, the patient leaving with a prescription for 30 or 60 days of drugs; on a hard day, however, the patient might need to wait still longer, for a blood test or an exam by a clinical officer. If the patient was lucky, the blood test could be performed in-house and he or she would make the return journey to the clinic in 2–4 days. If the patient was not lucky, he or she would be told to visit the mission hospital for the blood test, such a difficult and expensive proposition that few patients actually had the test done (see figure on p. 75). What made this exhausting ritual even more difficult for patients were the many uncertainties surrounding HIV care. Would the treatment they got at the clinic be ­successful—or would they be better off relying on religious healing or traditional medicine? If the treatment was successful, would the life-giving services last, or would they be withdrawn as soon as funding dried up? Would seeking treatment result in unwanted disclosure, with the patient’s whole village gossiping about his or her HIV status? Going through these processes of care every month, clinic day was an exhausting experience for patients, one that was full of uncertainties. Furthermore, these exhausting clinic days were always offset by the constant waves of conflicting messages

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Patient Flow Chart Get in line to sign up

Get mastercard and wait for the scales

Wait in line to see the nurse

See the nurse

Wait in line to see clinical officer

Schedule new appointment

See clinical officer

Top up on ARVs and go home Blood test for CD4 count

Sorry, CD4 count equipment not working. Go to mission hospital

Come again for results in 2–4 days

patients were exposed to when it came to HIV care. First, the invitation to receive care at the clinic followed years when no care was offered, and so the first question on everyone’s mind was “is this really true?” Second, and as was true elsewhere in the region, access to ART did not necessarily imply successful treatment or even access to food (Kalofonos 2010), so even the offer of care was not automatically accepted by patients well aware of its limitations. Third, the invitation to receive care sometimes conflicted with religious messages advocating for religious healing instead of biomedical solutions, or messages coming from trusted traditional healers opposing ART. And lastly, fears of HIV status disclosure, village gossip about the clinic, and sheer disinformation bombarded potential and active patients. As a result of this uncertainty, patients were constantly comparing the messages received at the clinic with those surrounding them in their communities. The new HIV clinics were discussed in homes, markets, churches, and bars, and conflicting messages were abundant. Many of the tensions surrounding treatment played out in the relationships between patients and providers. In those relationships, patients had to decide which messages to trust. James, a patient in his 40s who was traveling to the district hospital clinic from one of the more remote villages in the area, experienced this need to navigate conflicting messages about ART. Addressing these conflicts, he said: In the village, people who are not on treatment are saying, “What will you do when they stop giving this treatment of ARVs? You will suffer.” So when we come here, we ask the nurses if it’s true that this treatment will stop. So they say, “Who told you?” Then we say “People in the village who are not on treatment say so.” And the nurses say, “Just concentrate on taking treatment and don’t listen to what people say.”4

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The tensions described by James were not alleviated by the nurse’s answer, however, as the nurse did not address his fears or help him resolve conflicting messages. Furthermore, for many patients, difficulty trusting in the process of ART was compounded by years of conflicting messages from religious institutions regarding HIV and AIDS (Trinitapoli 2006; Trinitapoli and Weinreb 2012). With treatment now available, James and many other patients had to chart their own paths and decide which messages to trust. The lack of trust described by James and other patients was not necessarily unwarranted; ART services were new and had yet to prove sustainable. In Malawi, HIV-positive patients who had been left untreated for many years were now suddenly encouraged to get tested and treated. However, even following shifts in AIDS care policy and resource allocation, the healthcare system struggled to provide adequate services, exposing patients to the risk of intermittent care. Over the years, Malawians had not only seen the state pulling resources out of the healthcare system as a result of structural adjustment programs and market liberalization, but they had also seen clinics abandoned by international NGOs that had lost funding and left the country. Under such circumstances, why should the new ART programs be trusted? However, the dramatic effects of treatment led many patients to take a chance on HIV care. First documented in Europe and North America in the late 1990s, “the Lazarus effect” describes the well-known phenomenon in which patients receiving ART virtually “come back from the dead.” In the case of Malawi, potential patients saw their ill neighbors going back to work in their gardens and taking care of their families. Thus, over time, demand for ART care grew in the communities around the clinic, despite lingering suspicion. Patients interested in treatment had to grapple with another fear as well. As in many other HIV clinics in the region (Whyte et al. 2013), the busy hallways of the clinic precluded any chance of anonymity and made status disclosure almost inevitable, especially in very small communities. The fear of disclosure, given the stigma still associated with HIV, was a major deterrent for potential patients and their family members. Around the globe, HIV status disclosure has been recognized as a sensitive issue, and studies in Malawi have shown that fear of stigma in the community, as well as in the household, have an impact on willingness to disclose one’s HIV status (Anglewicz and Chintsanya 2011; Dlamini et al. 2007; Greeff et al. 2008). Naturally, fear of disclosure may lead to underutilization of services (Dlamini et al. 2007). Thus, part of the initial challenge facing the clinic was getting potential patients to come. Managing issues of disclosure was a cornerstone of the relationship between patients and providers, around which trust was built or destroyed. The clinic had experienced massive growth during its 3 years of operation, going from a dozen patients who were mostly hospital workers to over 2000 patients in 2009, and given the crowds in the waiting room, disclosure was a topic around which patients and providers had to collaborate. Patients and providers worked together to prevent unwanted disclosure, a difficult task with a large patient population. Nurses and clinical officers shared numerous stories of worried patients providing

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false names and addresses or seeking the staff’s help in hiding their disease from family members and neighbors. More than once during the process of updating master-cards, nurses pointed to personal information columns and commented off handedly about the name of the patient being fake, or the village address non-existent. Moreover, since many of the providers lived in the communities they served, their potential relationships with patients, whether casual or noncasual, extended beyond the clinic, making the pressure surrounding their relationships even more important to manage. Providers were not only entrusted with guarding the HIV status of their patients, but they were also involved in patients’ efforts to prevent, or control, HIV status disclosure in their families and communities. Even had disclosure at the clinic not been a worry, having the word get around their community that they were being treated—whether because they trusted the wrong person or someone saw their pills—was enough to scare some potential patients away from visiting the clinic. Mrs. Phiri explained patients’ fear of unwanted status disclosure in the community thus: The most common thing that happens in the village is that when you tell one person, that one will tell the other one, and the other one will tell the other one. In the end, the whole village will know that you are on ARV. This is what causes people not to reveal. Patients also recounted to me, and the staff, the techniques they used to hide their pills from relatives in the household—not an easy task when living in an extended family compound. Justina, a patient at the clinic, explained the logic behind HIV status disclosure management: People in my house don’t know anything. I just told my husband that I am going to the clinic to take [this] medicine. When we are taking this medicine, we don’t tell a lot of people; the fear is that they will publicize the news to many people. But if you are married, you can tell your husband and some of your relatives, so that maybe [if ] you will get sick they can go to the clinic and collect your pills. Not your neighbor or friend, unless she is your best friend, and only if she can keep the secret. As a result, Justina had to partner with the clinic’s staff to make sure that only her husband was included in her treatment. For many of the patients, the clinic’s staff served as not only the center of a very small circle of people who were aware of their HIV status, but also people to confide in when deciding who should be added to the circle of people in the know. Of note, in the consultations that preceded treatment initiation, patients were instructed to choose a treatment partner, with whom they would come to the clinic for adherence counseling and treatment introduction. The rationale behind the use of a treatment partner was to assure that the patient had some support, both emotional and practical, and that the clinic had another way of

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communicating with the patient in case their health status deteriorated. Treatment partners were not only invited to accompany patients on the monthly visits to the clinic, but they were also received on their own if the patient was not doing well. In these circumstances, some disclosure was unavoidable, but as Justina explained, the choice had to be made wisely. The decisions regarding the choice of treatment partners, or the people to whom the patients would disclose their HIV status, were often made in consultation with the nurses. Even healthcare workers were not immune from concerns about accidental disclosure. First, a repeated narrative among ART providers was the need to handle stigma by association, or courtesy stigma (Goffman 1963): whispered accusations that their work with HIV-positive patients was a result of their own HIV-positive status. Although providers tended to dismiss these rumors as meaningless village gossip, the sheer mention of them was indicative of their importance. Second, these concerns became real when providers found themselves in the role of patients, a relatively common position in a country with a 14% HIV prevalence. Although many hospitals invited their employees to be treated “inhouse,” both to ease the burden of traveling to other clinics and as a show of normalcy and the desire to lead by example, many healthcare providers preferred to be treated separately from their patients. One day, when I was accompanying Grace, one of the nurses at the clinic, in the treatment room, she said: This one, the last one I was seeing, she is a health worker in the health center. But she is taking ARVs here because she doesn’t want to take at her own center. Is it the same with hospital staff ? Yeah. The ones working here? Exactly. Some of them are taking [their ART] in Lilongwe. Very far… Just not to be in their own area? Just not to be known … Patients’ fear of unwanted disclosure at the clinic was not unjustified. Such disclosure could result from interactions with other members of the community at the hospital or from breaches of confidence at the clinic. The latter possibility was brought up by patients and denied by the staff, although other studies have addressed breaches of confidentiality in clinics and hospitals in Malawi (Greeff et al. 2008). Fear of disclosure led to complex relationships between the clinic’s staff and the patients. Openly thankful for the treatment and support they received at the clinic, as well as the staff’s help in managing issues of disclosure, patients were noticeably grateful within the clinic walls. Moreover, during clinical interactions, while waiting to be seen, and in passing conversations, patients acknowledged the hard work done by the clinic’s staff and expressed their trust in the

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staff. Talking about her relationship with the clinic’s staff, and the trust that was built over time, Wema, a 31-year-old patient at the clinic said: I feel most comfortable with Johnston, Mrs. Phiri, and with the nurse with the black complexion, the one who was teaching us [at the training meetings for new patients]. They are the ones who welcomed me when I started, and they are the ones who work here most of the time (laugh)…. I told them that I feel nausea each time I take the pills, so they told me to eat before taking the pills. So I saw that it was true. They told me that if you take [pills] without eating you will fall down. Do you feel comfortable coming to the clinic? Yes. Why? I know that I am going to our “house” where we chat. I can say our place [the ART clinic] is a house where [I can] be a person, not have doubts when coming, and no one can ask, “What are you doing here?”… They keep our privacy. How do you know that they keep your privacy? They put chains here,5 so that when we come here we should sit there. Even if we meet [the clinic’s staff ] out there [outside the hospital] they don’t say “Ahh, look at her, you receive such and such things (ARVs).” We know ourselves. However, as mentioned in Wema’s quote, patients’ expressions of gratitude inside the clinic did not always translate to their interactions with providers outside the treatment room. Concerned about the clinic staff’s visibility in town and the surrounding villages, patients were sometimes uncomfortable interacting with the nurses and clinical officers outside of the clinic. Many staff members recounted stories of awkward interactions with patients when meeting in the market or on the road. Indeed, some said that they never initiated conversation when meeting patients outside the clinic and instead waited to be approached. The staff did not seem to be offended—this was all part of their work at the clinic. And, knowing the communities in which they worked, staff members understood very well why patients did not want to be associated with them. Grace, who was also a pediatric nurse, once said she thought that some patients talked to her in public because she was still associated with the pediatric ward, and thus she could always be introduced as the nurse who took care of someone’s child. Yet, it was still very common for patients to ignore her in the boma (town center) or the market and then apologize for their behavior when sitting in the treatment room.6 As long as they kept coming to the clinic, she was happy. Clearly, unwanted disclosure of HIV status has many harmful effects. However, HIV status disclosure can also have positive effects. It can lead to more support from social networks, religious and otherwise (Trinitapoli 2006; Trinitapoli and Weinreb 2012), and reduce the stress associated with keeping a secret

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(Greeff et al. 2008). It has been argued that the high levels of adherence to ART in sub-Saharan Africa are the result of active social networks and the support gained from accessing social capital (Mills et al. 2006; Ware et al. 2009). Thus, disclosure, when managed appropriately and at the behest of the individual, can help patients tap into their communities for support. Patients’ conversations with the providers at the clinic about the choice of treatment partners, or the possibility of disclosure to family members and friends, were not only important in building trust between patients and providers. They were also a significant step in helping patients weave a strong support network that would go beyond the patient-­provider relationship and help normalize treatment for patients in an environment still ripe with stigma, a reality of which patients were painfully aware. Some evidence suggests that access to care may be reducing AIDS-related stigma (Farmer et al. 2001). For example, Castro and Farmer (2005:57) write: “The transformation of AIDS from an inevitably fatal disease to a chronic and manageable one has decreased stigma dramatically in Haiti.” A similar process seems to be underway in Malawi. When talking about the relationship between treatment availability and its acceptance among patients, Chisulo, a clinical officer at the clinic, observed: People now disclose [their HIV status] because they know that at the end they will have at least something. In the previous years, once you disclosed your status there was nothing to be given to you, but now there is ART and people want them,7 so they come… After the coming of the ARTs people realized that these ARTs are helping people. That started in about 2005 and 2006. Elaborating on the changes that treatment has brought to communities, and the acceptance of HIV treatment that came with it, Chisulo continued: People are getting the drugs, and it is a big change because those who were sick and not working, now they can go back to work and they can take care of their families. So I think they appreciate it, and this is also why we have an increase [in clients] and we are reaching our targets. So yes, they are welcoming the idea of ARV. Similarly, on the effect of treatment on stigma in the patients’ communities, Grace said: Treatment changed the stigma in the communities. Yeah, exactly, people can talk about ARVs in public these days, unlike in the past. It was like, yeah, it was an abomination—to mention about HIV/AIDS and to say “I’m HIV positive.” In the past, it was as if you were mentioning something that is not accepted in the communities, but these days people are mentioning it publicly.

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Finally, although the fear of disclosure may have been decreasing somewhat by the time of my research, the difficulty of receiving care at the clinic, caused by common healthcare delivery problems, still threatened the relationship between clinic staff and patients, and kept stigma alive. Effective and efficient clinical services have positive effects not only on the health of patients, but also on prevention efforts, AIDS-related stigma, and staff morale (Castro and Farmer 2005). However, the process of accepting treatment, as well as the reduction in stigma that accompanies it and allows for easier HIV status disclosure, is only possible when treatment is available and effective. Patients’ ability to benefit from ART, as well as the changes it brings to their communities, is tied to patients’ ability to build strong and trusting relationships with healthcare providers over time, and to enjoy quality, sustainable healthcare. Without successful and sustainable services, stigma is a strong deterrent; Chisulo, for example, was not oblivious to the shortcomings of the care his clinic provided and was frustrated by the quality and accessibility of the clinic’s services: We have three testing clinics in [rural] health centers, but maybe in 3 months we can have two more clinics open…as of now, they are operating only for VCT [Voluntary Consulting and Testing] because of the limited resources…8 The personnel is too small and also the drugs… People complain that the clinic is very far and you need to have transport money to come here every month and it is very difficult to them. Let’s say that if they are coming from the villages they will have to pay at least 600 kwacha in order to come here and to go back. We need to do all the work around here.9 Maybe if we had more people full time at the rural health centers, and more drugs we could manage… Maybe in the future that will happen. Maybe in 10 or 20 years [laughing]. The common barriers to access to care that Chisulo mentioned were critical factors in determining both the rate at which services were utilized and the rate at which trust was built between patients and providers. In terms of treatment normalization, these barriers increased patients’ experiences of “continuous uncertainty” (Moyer and Hardon 2014) and “permanent transition” (Mattes 2014), making the “chronic normalcy” that is needed to reduce stigma and ­a llow safe HIV status disclosure near impossible. Notably, although from time to time patients would wonder aloud what had happened to missing medications or nutritional support items, hinting that the staff was responsible, most patients acknowledged the tireless work done by the nurses and clinical officers who provided care at the clinic. As we have seen, although the benefits of treatment were recognized in the communities served by the clinic, the implications of care were not necessarily all positive. International and national forces had suddenly provided a huge influx of money for HIV care, but AIDS care clinics still struggled with privacy and quality of care issues. By accepting the invitation to come to the clinic, individuals bore

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the risk of exposing their HIV status, receiving substandard care, and putting their trust in a system that, unlike traditional medicine, was new and unproven. These factors shaped the relationship between providers and patients, and thus the experience of patients. As patients and providers have said repeatedly in interviews, the provision of care, even if imperfect, is a great improvement over no care. However, better, more consistent care would go a long way toward increasing levels of trust, which could in turn have positive effects on treatment outcomes and reduce stigma in patients’ communities. Healthcare delivery depends on strong relationships to function properly, yet, without a strong healthcare delivery infrastructure, it is difficult to build the robust relationships required to engage patients. Through steady support for HIV care, the web of relationships that underlies quality patient care can be cultivated. This process will necessarily be a slow one that develops with time, as patients learn to trust a healthcare system that has long disappointed.

“Being pressurized”: Relationships at the clinic from the providers’ perspective

Grace, a 36-year-old pediatric nurse, was married to a teacher, had three children, and lived in a nice house on the hospital grounds. She was an ART provider and worked at the hospital’s HIV clinic most days it was open. Although she was only in her mid-30s, she was older and more experienced than most of the providers at the ART clinic and had an air of confidence. She knew the hospital like the palm of her hand, had years of experience in the pediatric ward, and could spot a child with malaria a mile away. Grace’s experience and professionalism won her a position of respect at the hospital, one she never seemed to take advantage of, but instead used to mentor young nurses. Grace’s experience as a healthcare provider in Malawi also situated her as both an observer of changes and an active participant in those changes. Grace was in the first cohort of Malawian nurses trained to provide ART in the early 2000s, back when free ART clinics were still a distant dream in most of Malawi. Indeed, she was one of the first staff members at the clinic when it opened, back in the days when it only had a handful of patients, most of them hospital employees. Grace told me that, even then, she knew that things would change and that the empty waiting room would soon fill up. She was right, of course. Over the years, she was able to observe the changes in HIV care in Malawi, especially the shift from prevention efforts and testing to actual care. As Grace once noted in an interview: People are interested in going and getting tested now. Yeah, people are very interested to be tested, so they should know their status.

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Do you think more people are getting tested now than before? Yes, exactly. Because in the past, people were feeling that once you go for testing you know your status, and what’s next? But now they know that once you are found to be HIV positive, there is hope. You go for ART and at least you can live a longer life. And you feel there is a difference between counseling when there is no treatment and counseling when there is? Mmm, yeah. In fact I should say it was worse sometime in the past. There was no care. We were doing counseling, and they would go for testing in the lab, and they would come back to get the results. We had problems with the results when someone was positive. But these days you can tell somebody he is HIV positive and he laughs, smiling. But in the past it didn’t used to be like that. People were crying and some would say, “I am going to commit suicide.” But with the coming of the ART… people know that there is hope. That changed everything. Although the clinic’s roster of patients in 2009 spoke volumes about the need for HIV care and the success of the rollout, the provision of ART in these ­resource-limited circumstances brought new sets of healthcare delivery ­challenges to bear on providers. From managing the consequences of initiating treatment without accurate clinical information to the temporary closing of understaffed clinics10 to an inability to monitor patients’ medication adherence to the inadequate provision of treatment for ARV side effects or AIDS-associated infections, healthcare providers constantly struggled with healthcare dilemmas that affected their relationships with their patients. First, the physical landscape of care (Milligan and Wiles 2010), shaped by patient needs and guidelines, served as the backdrop for the relationships providers had with their patients and often complicated them. In the cramped hallways of the clinic, which were always bursting at the seams with patients waiting to be seen, providers at this clinic, as at many other clinics in the region (Whyte et al. 2013), had to navigate the practical challenges of managing confidentiality in conditions that made privacy near impossible. As previously discussed in this chapter, disclosure and privacy issues were the cornerstone in building trust between patients and providers. Within the confines of the physical landscape of care in which providers worked, their role as secret keepers was almost impossible to play. Second, given the clinic’s limited resources and problematic physical environment, difficulties stemming from the provision of substandard care confronted healthcare providers with complex ethical dilemmas on a daily basis. This affected their relationship with their patients and their view of themselves as good healthcare professionals. Specifically, forces external to the clinic and its everyday life played an important role in shaping the relationship between providers and their patients. Consider the international guidelines created to cope with the growing number of patients recruited into ART programs. These guidelines acknowledge

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the limited resources available to many ARV clinics operating in sub-Saharan African countries. In the absence of accessible laboratory testing to determine viral load and HIV’s impact on a patient’s immune system (CD4 counts), these guidelines for treatment initiation and continuation focus on clinical staging. Developed by the WHO for treatment programs in resource-limited areas, clinical staging relies on standardized clinical parameters to enable providers to make treatment decisions based solely on clinical presentation (Weinberg and Kovarik 2010). The Interim WHO Clinical Staging of HIV/AIDS and HIV/AIDS Case Definitions for Surveillance: African Region, published in 2005, states that In response to the changing landscape of HIV/AIDS, particularly in r­ esource limited settings, and specifically to support scale up of anti-­ retroviral ­treatment, revisions and harmonization of the clinical staging and case definitions for surveillance are required… The revisions were designed to strengthen clinical staging and the AIDS case definitions for both adults and children, and to simplify and standardize definitions for use by a cross-­ section of health providers, programme managers and surveillance officers. They were also intended to harmonize paediatric and adult clinical staging and AIDS case definitions so as to improve patient management, patient monitoring and surveillance efforts. (WHO 2005:2–3) In clinics like this one all over Africa, WHO clinical staging guidelines were used to determine when to initiate treatment and whether a patient was responding to treatment. Thus, these guidelines were at the heart of the clinic’s work. Despite being meticulously developed and tested, clinical staging guidelines put a substantial burden on the providers who bore the responsibility for making tough decisions without the support of laboratory testing, especially when the clinical presentation of some patients was not as clear as indicated in the guidelines.11 The guidelines acknowledged that some cases might fit the standardized clinical parameters poorly and that those would require a different course of action. However, what that course of action might be was not specified, leaving many clinicians at a loss. With an ever growing number of patients in the waiting room, nurses and clinical officers had to make decisions about treatment hundreds of times a week based only on short interactions with each patient. In a relationship that was based on trust, making the right decision was extremely important; failure to make the right call could risk a patient losing trust not only in a specific individual provider, but also in the whole process of care. These decisions made under pressure not only shaped the relationships between providers and their patients, but they also shaped the way providers saw themselves in those relationships. Acknowledging the importance of strengthening their patients’ trust in them as providers, and in the treatment process as a whole, providers worked to give the best and most reliable care they could offer. Providing substandard care, either due to lack of infrastructure or equipment, or due to the need to make clinical decisions with insufficient information, was experienced by providers as not only a barrier to their relationships with their patients, but also a personal failure to reach their own professional goals. This

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frustration became a fact of life that providers struggled to overcome as they sought to build trust with their patients. Reflecting on her experiences at the clinic, Grace pointed out: Unlike the young nurses, I know how important our work is. But this is hard, and I am exhausted all the time… It was not hard to understand why. On one of those hectic clinic days, with the constant buzz of activity filtering in from the waiting room, Grace redressed a patient’s leg while saying to me: His immune system is very weak. He suffers from a lot of infections. And look at his chronic sores and his KS [Kaposi’s sarcoma]—the smell is awful, isn’t it? But we haven’t had any vincristine in the pharmacy for months now, and even our supply of antibiotics is limited, so what can I do? According to Grace, the patient was doing so poorly that most days he could not even travel to the district hospital. But that day, he had managed the trip. Grace continued: The clinical officer gave him a prescription for a private pharmacy, but we all know there’s no way he can afford it. All I can do is give him the [ART] refill and hope for the best… Later that day, across the dark hallway from the nurse’s room, John, a young clinical officer still in training, commented on the growing volume of patients at the clinic and the challenge of treating them all. Looking at the overcrowded waiting room and then at me, John said: As you already know, this program is screening a lot of people, so a lot of them are seeking help. So if I am alone, it means I will have pressure, so I will be pressurized not to give adequate care as I would have liked to give. Does it mean you spend less time with each patient? Yeah, less time… And in the end of the process, they can’t get enough information about their ARVs, and also how to take the medication. You just do a brief conversation with them and see how they can be managed. When exploring the relationships between patients and providers at the ART clinic from the providers’ perspective, one is struck by the fact that providers feel many of the same tensions that shape patients’ experiences of ART. The precarious states of “continuous uncertainty” (Moyer and Hardon 2014) or “permanent transition” (Mattes 2014) were clearly not limited to the patients at the clinic, but also extended to the ART providers (Rosenthal 2016). The uncertainty surrounding the sustainability of the services they provided, the constant need to negotiate work in an understaffed and undersupplied environment, and the tensions surrounding provider-patients relationships at the clinic made the

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process of care feel like a constant transition into a much desired normality that never came. These states of uncertainty and transition may undermine providers’ ability to deliver reliable services over time, and thus erode the foundations of the normalization processes necessary to move forward in AIDS care. The limiting physical environment of care, the pressure to care for as many patients as possible even when drugs and equipment were unavailable, and the responsibility to build sustainable relationships of trust with patients in such trying conditions were anything but normalizing for healthcare providers. Indeed, the ART rollout campaign in Malawi is currently characterized by a tension between AIDS normalization and AIDS exceptionality, and there is a need to account for the experiences of both patients and healthcare providers to gain a broad perspective on service delivery. Situated at the heart of the ART delivery process, healthcare providers are tasked with negotiating relationships with their patients, relationships created with the goal of HIV normalization, while navigating global regulatory regimes in a system created by AIDS exceptionalism. Special treatment protocols, and a system of care based on donor aid that is earmarked for HIV treatment without addressing other needs of patients and providers, exacerbate rooted notions of AIDS exceptionalism (Benton 2011; Smith and Whiteside 2010) and make the goal of normalizing care all but impossible. To be fair, the guidelines governing the work of providers like Grace and John were not totally detached from the everyday realities of providing care in rural Malawi. The ART clinic in this rural Malawian hospital was operating with the support, and under the watchful eye, of the local and international health community. However, the pressure on district providers and their relationships with patients that emerged from international and national policies was still immense. Any attempt to relieve such pressures and promote the normalization of HIV care will require an investment in strengthening staff, stuff, and systems to help foster a network of trust through which ART can be delivered efficiently.

“I make my blunders, and off I go”: The relationship between the district clinic and the world of global health On the left of the entrance to the clinic’s waiting room, three cabinets told the story of the relationship between the clinic and the world of global health. These cabinets held a few dozen folders filled with paper cards, each covered in a plastic bag. Each of these cards corresponded to a patient at the clinic, representing the low-tech version of a patient’s medical record. When a patient presented at the clinic for the first time, a staffer would issue a new master-card to record the patient’s personal information, their health status, and the details of the clinical interaction in shorthand. Written on each master-card was a serial number, which would follow a patient throughout treatment. When the clinic opened, the first patient was assigned the number 1. By 2009, the new serial numbers being given out were greater than 2000. Every morning the clinic was in session, Johnston the clerk would unlock the cabinets and make sure that all the folders were in place. When he greeted

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the patients as they lined up to see the nurses or clinical officers, Johnston would hand each of them their master-card, to be updated by the clinical staff. At the end of each clinical interaction, the staff would update the master-card and keep it to be filed. At the end of each clinic day, after the last patient walked out the door, the clinicians would return the pile of updated master-cards to Johnston, who would file them away back in their folders. Once all of the master-cards were back in place, Johnston would lock the cabinets until the next clinic day. The paper master-cards filed carefully in the three locked cabinets were joined by several clinic ledgers, as well as pharmacy logbooks and printed clinical guidelines. These records, treated carefully, did not include all the unused, outdated, and crumbled reams of paper piled in a small, hardly accessed storage room in the back of the clinic. Indeed, one of the most noticeable features of the clinic was the papers one encountered in each room and at each stage in the care process. Piles and piles of papers, including master-cards, logging journals, treatment record journals, and pharmacy journals, littered the clinic and contributed to the feeling of chaos. All were in paper form, all were filled with scribbles, and all were waiting to be reported to a higher authority: the district health office, the ministry of health, or international donors. In light of the emphasis on these records, recordkeeping played a major part in everyday clinical interactions. Indeed, these reams and reams of paperwork were the everyday manifestation of the relationship between the district clinic, and national and global institutions. Although anthropologists have addressed many facets of the ART rollout in many areas of the developing world, due to their mundane nature and the distain they provoke in healthcare providers, recordkeeping, paperwork, and the red tape associated with healthcare services are rarely discussed. However, recordkeeping occupies much of healthcare providers’ time and thoughts, and it is often considered both a challenge and the key to providing quality care in resource-limited settings. Unfortunately, in the absence of an electronic medical record (EMR) system, recordkeeping was manual and time consuming. Nurses, clinical officers, and physicians were required to perform these tasks without secretarial assistance and with long lines of patients waiting outside their doors. After a short clinical interview, providers were required to record a patient’s status in his or her “master-­ card”: the latest entry detailed whether the patient was A (alive), D (dead), DF (defaulted), STOP (stopped treatment), or TO (transferred out to another clinic). In addition, clinicians were required to note whether the patient was active: The master-card noted whether they were ambulatory or in bed and whether they were attending school or work. Clinicians also recorded whether a patient was experiencing side effects, and the level of adherence to treatment. Finally, comments were entered in the patient’s health passport12 to ensure continuity of care in case the patient decided to seek treatment elsewhere in the future. The information recorded during the clinical encounter represented only the beginning of the paperwork process, however. After seeing a patient, or at the end of the day, all master-card information was copied to the clinic’s ledger, named the “Ministry of Health ART register for first-line regimen,” for

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follow-up and reporting to district- and national-level institutions. Once every 3 months, all master-cards and ledgers were reviewed in preparation for a quarterly clinic report submitted to the district health office and the Ministry of Health. Once again, in the absence of an EMR system, the report was prepared manually, requiring clinical staff to go over thousands of master-cards and ledger entries. In order to review all the master-cards and ledgers and update the reports, all of the staff were recruited and the clinic was shut down for several days. No doubt, the time and energy spent on going through thousands of master-cards and ledger line-items could have been spent on other activities. Given the tremendous burden that recordkeeping places on already overextended healthcare providers, it is easy to dismiss the required paperwork as excessive and unnecessary. However, the guidelines created by the Malawian Ministry of Health that govern treatment procedures, adherence follow-up, and recordkeeping result from an international push to strengthen health systems by accumulating health data and health systems performance information. The rationale behind the international move toward data-driven activities in health is not unfounded. With billions of dollars channeled to health programs around the globe, the need to keep a record of activities, the number of patients treated, and patients’ reaction to treatment is essential to the continuation of those programs. Furthermore, the development of large-scale resistance to first-line medications is a real threat to the ART rollout. The only way to ensure that the scale-up of treatment does not cause a surge in resistance, a development that would risk the whole campaign by making affordable drugs ineffective, is to carefully follow up on adherence to treatment and document cases of drug resistance. ­A lthough the importance of data is widely accepted in health systems worldwide, in health systems supported by international agencies and donors, the push toward ­evidence-based performance is felt even more acutely on a daily basis. Drawing on the WHO’s framework on health systems (WHO 2007), and its initiative to support the creation and analysis of data relating to health services worldwide (and especially in developing countries), all donor-lead health initiatives now include a data collection component. Understandably, this data collection component is entrusted to the hands of aid-receiving programs. Explaining the importance of data collection in health, and the WHO’s role in it, Murray and Frenk, both global health leaders and champions of data-driven decision-making in health policy, explain: A critical mandate of WHO is to provide meaningful comparable information on outcomes to the world, to empower people with information that is central to their wellbeing. (Murray and Frenk 2011:1170) In referring to the importance of evidence in improving healthcare delivery, Frenk, the former Mexican Minister of Health, Dean of the Harvard School of Public Health, and a public health leader, says:

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Health systems are the main instrumentality to close the knowledge-action gap. To realize this potential, it will be necessary to mobilize the power of evidence to promote change …. For this reason, the current surge of ­initiatives on health systems strengthening must be accompanied, from the outset, by an effort to generate a process of shared learning among countries. (Frenk 2010:2) Finally, emphasizing the importance of health-related evidence, and the imperative to make it public, internationally funded, and accessible, Frenk concludes: This type of evidence is a global public good. Therefore, its funding and coordination requires international action with far more attention than it has received so far. (Frenk 2010:3) This push toward evidence-based programming in health cannot be understood as a stand-alone phenomenon in international development. Development economics has long been the slave of country-driven data and the subject of struggles over the best ways to accurately represent various aspects of poverty, wealth, and economic development. Nevertheless, the meaning of much of the data generated worldwide (and especially in the developing world) is often contested. Limited by the less-than-ideal settings in which data are collected, much of what we know is based on information whose accuracy is questionable. Furthermore, weak local governments often have limited information about their citizens. In many countries, the inability to perform an accurate census results in the lack of very basic data, such as the number of citizens, births, and deaths. This severely hampers our understanding of a disease’s impact on a population or the number of people served by a treatment center. In addition, weak surveillance systems in many countries make disease prevalence information sketchy at best. One famous consequence of this uncertainty in health is the gap between various estimates of the number of people living with HIV worldwide: millions separate the highest estimate from the lowest one (WHO 2015). Yet, these data drive much of the policy in the field of health and development. Addressing the limitations of development statistics, Morten Jerven (2009, 2012a,b) has argued that African development statistics tell us less than we would like to think about income, poverty, and growth on the continent… The system currently causes more confusion than enlightenment. ( Jerven 2012b:147) And yet, contested as the data may be, healthcare providers must document “performance,” recording it and reporting it. Indeed, this is one of the main ­features of the current world of global health. The march of letters in the master-­ cards and the piles and piles of papers teetering on every flat surface in the clinic

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represent the endpoints of decisions made by forces operating far beyond the hospital gates. One example of a recordkeeping task that has a solid rationale, but demands an inordinate amount of clinician time—and thus may result in unreliable data— is pill counting. To encourage adherence to treatment and to assess a patient’s self-reported adherence, nurses are required to perform a pill count every time a patient arrives at the clinic to receive his or her refill for the coming months. Typically, the nurse asks the patient to open her/his pill bottle and show how many pills are left.13 Knowing the date of the last refill and the number of pills in each bottle allows the nurse to determine the level of a patient’s adherence (by calculating the number of missed doses). Under optimal conditions, this process is relatively straightforward. A standard pill bottle issued by the Malawian government contains 60 pills. Veteran patients are usually provided with two bottles and are asked to come to the clinic every 2 months. With one pill taken twice a day, the instructions from the Ministry of Health state that If patient comes at 4 weeks, count number of pills in the bottle (8 pills or less = 95% adherence). So, the math is simple: If a patient comes every 2 months, and the nurse counts fewer than 16 pills, adherence meets the target, 95%. When patients come at other times or have more leftover pills, however, the math gets complicated. And, when the math gets complicated, it is sometimes “simplified.” In the clinic, I observed, sometimes the patient would be warned about the risks associated with intermittent care, but the number of pills left in the bottle would not necessarily get recorded, in an attempt to avoid staining both the patient and the provider with a record of bad practice. The inaccuracies that entered the records did not end there. Recordkeeping was part of an already cumbersome process of patient care, so it was no surprise that the nurses and clinical officers found it not only tedious, but also sometimes harmful for the patients. Because the clinic was short-staffed and relied on rotating nurses and clinical officers, maintaining accurate records became even harder. As Grace explained, You see there are a lot of mistakes. Why? Because this one comes, as I have come—I make my blunders, and off I go. That one will come and see a lot of blunders. At least one nurse should be permanently here. Maybe the other ones could be alternating, but we need to have at least a permanent nurse here for continuation of everything. A lot of nurses don’t enter the numbers of the register… and the feeling is you do whatever you feel like, and you go. There is no continuity of whatever has been done. Grace’s frustration with how often blunders were made was warranted, given the importance of recordkeeping. As one of the more permanent providers at the

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clinic, Grace was often more aware of these mistakes than other providers. She was also concerned about continuity of care, and in this case, she was addressing not only the impact on recordkeeping, but also the very tangible impact on the treatment provided to patients. If side effects were not documented, for example, providers would be unaware of previous adverse reactions to medications. Even less life-threatening occasions, such as missed appointments, could disrupt care if providers were unaware of a history of missed appointments. And lastly, accurate recordkeeping was important in supporting the team’s efforts in maintaining routines of care at the clinic. Messy recordkeeping exacerbated the sense of disorder at the clinic that was already felt due to the need to rely on rotating staff. Grace was not alone in her appreciation of the rationale for recordkeeping. Nurses and clinical officers were quick to explain that it was important to know whether patients were adherent. They also explained that by tracking patients’ adherence, they could prevent resistance to first-line drugs, which is a risk that threatens every massive service rollout aimed at an infectious disease. In a sense, providers were “fighting resistance with records,” although with the long lines in the waiting room, the short time allocated for every clinical interaction, and the massive amounts of paperwork, their “weapons” were exhausting to employ and were thus, on many occasions, overlooked. However, these rituals were still being performed, even if symbolically by some, and each clinic day would end with all the master-cards filed according to their serial numbers in the locked cabinets in the waiting room, and all the clinic journals piled at the corner of the desk in the nurses’ room. However cumbersome, challenging, and inefficient recordkeeping was, it would be a mistake to overlook the role that it played in the relationships between providers and patients. Pill counts were more than just a measure of accountability mandated by the donor community; they were also an activity used to support patient management. In these encounters, providers’ encouragement and support were not only “systems of adherence production” used to control patient behaviors (Mattes 2011); the ritual of the pill count also provided the underlying rules of engagement in a very short clinical interaction. Pill counts and form filling took up much of the clinical encounter, and only rarely did patients contest these interactions, but they also allowed both patients and providers to ascertain their relationships as they provided the structure of the clinical interaction. As the local interpretation of the guidelines for adherence monitoring, pill counts became the cornerstone for a structured clinical interaction. This structure was made even more important with the limited time allowed for each provider-patient interaction. With so much time, effort, and energy spent on recordkeeping, it was easy for providers to lose sight of the important link they themselves represented in the chain connecting global and national institutions to patients. The records the clinic’s staff kept provided the data that improved care for individual patients and patients as a group. Since the clinic staff practiced far away from the locations where global health decisions were made, the master-cards, clinic journals, and quarterly reports they filled out were one of the most important links in their relationship with the global health community. However, this global-local

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relationship was not necessarily experienced as mutually beneficial, as the demand for collecting data without supporting infrastructure placed stress on providers. These providers were already struggling to build relationships based on trust with their patients, an aim made difficult by very limited interaction time and the offer of imperfect care. The provider-patient relationship is the very bond that global policies were hoping to encourage as part of the successful ART rollout; therefore, it is important to continually revisit the balance between the need for data and the ability of healthcare workers to collect that data, given their primary responsibility to patient care.

Conclusion There are no words to describe the effects of a timely and appropriate course of ARV therapy on a patient with HIV, and those of us who have witnessed the Lazarus effect know how it feels to see patients literally come back from the dead. Thus, it is impossible to stress enough how pressing, important, and morally necessary the imperative to provide ART in developing countries is. The ART clinic is the place where global health policy, national guidelines, and history meet to enable all of it to happen. That said, we can still ask how the new services provided at ART clinics around the world affect the lives of patients and providers, and we can still explore what courses are charted from the meeting rooms in Geneva and Washington, DC, where policy decisions are made, to the nurse’s room in a public district hospital in Malawi. What is at stake for a patient whose status is accidentally disclosed due to the crowded conditions at the hospital? Or, for a provider whose hours of paperwork prevent her from comforting the patient with a new HIV diagnosis the way she would like? The clinic is the place where all directives from above are filtered through a dense network of relationships linking patients, providers, the clinic, and the world of global health. Any attempt to improve healthcare delivery and bring services to the people who need them requires our attention to these relationships, their strengths and weaknesses, and their impact on the lives of the people entangled in them. In a sub-Saharan African setting, the focus on the importance of interpersonal relationships in healthcare is hardly new (Livingston 2012; Maes and Kalofonos 2013; Ware et al. 2009; Wendland 2010). But, in a time when most funding and political will is focused on the mechanics of treatment, medications, and protocols, the role of the relationships created during the process of healthcare is sometimes neglected. In the ART clinic described above, as in healthcare stations worldwide, patients want to be able to trust their providers, and providers want to know that they provide quality care that makes them worthy of trust. Both want to be a part of a global system that addresses their actual needs, not their needs as imagined by others. The donor community, whose dedication to improving health is measured by the magnitude of its financial investment, inadvertently contributes to the

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everyday challenges of healthcare delivery, and these everyday challenges manifest in the complicated relationships between patients and providers at the clinic. These relationships are where improvements in healthcare delivery can happen. Strengthening relationships between patients and providers is key to successful healthcare delivery, and it can be done by adding more staff to share the burden of an overcrowded clinic in which no one has time to talk or the option of keeping their HIV status private, and by providing the support needed to deliver the consistent, reliable, and inclusive services that foster an atmosphere of mutual trust. These relationships would also benefit from an improved physical infrastructure and technological innovations. The replacement of paper-based medical records with EMRs is only one example of how a technological solution will not only improve healthcare and reporting, but will also have a positive effect on the relationships at the clinic by freeing up provider time for actual provider-­ patient interactions. The adoption of technological solutions for patient record management is already occurring in many low-resource sites of healthcare delivery. In these healthcare settings, specially designed EMR systems are being used with positive outcomes for patients and providers (Blaya et al. 2010; Mamalin and ­Biondich 2005; Williams and Boren 2008; Wools-Kaloustian and Kimaiyo 2006).14 The use of EMRs could also improve the relationship between the clinic, and the national and global community, by helping healthcare providers supply accurate data that do not come at the expense of patient care. The ART rollout is already a tremendous achievement, and the changes it has brought into the lives of people and communities are not to be denied. Many of these changes are centered on relationships, and these relationships are at the heart of the normalization of ART. This is not to say that relationships should be instrumentally manipulated to improve care, but policies can emphasize support for relationships that already exist and play a crucial role in the healthcare delivery process. Given the effort that patients and providers already expend on making these relationships work under difficult conditions, any added support is likely to be a worthwhile investment. When leaving the ART clinic on one of my earlier visits, I asked a clinical officer for his take, and I’ve been quoting him ever since. He said: “Most of the time I’m optimistic. Because there is a change and it is better than nothing. At least it seems like progress, so I am optimistic.”

Notes 1 Female healthcare professionals at the clinic were always in uniform, either a white dress or a white pant suit, and when seen outside the clinic would wear “western-­ style” clothes, including pants. However, most female patients at the clinic were rural and usually wore a Chitenje, a colorful cloth, over their skirts. 2 Although patients were “shouted at” very rarely, nurses did sometimes use sharp tones with some of the patients (especially the ones who missed appointments, did not adhere to the treatment, neglected to report side effects, or did not follow the instructions on how to treat side effects). The fear of being “shouted at” thus represented both the fear of actual harsh tones and also the intimidating prospect of facing healthcare professionals who were much more educated and of higher socioeconomic status.

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3 Parts of this chapter have been adapted and revised from Rosenthal (2016). 4 Nurses and patients often deferred to religious leaders and institutions to promote patients’ adherence to treatment. However, religious leaders were also sometimes the cause of conflict, advising their parishes to forgo treatment and believe in God’s healing powers. For more on the role of religious institutions in the reaction to the AIDS crisis and new treatment opportunities, see Trinitapoli (2006) and Trinitapoli and Weinreb (2012). 5 Unlike other wards at the hospital, the ART clinic was locked at night and on its days off. 6 In Malawi, it is common practice for strangers and acquaintances to stop and exchange elaborate greetings when meeting. Thus, ignoring a person one knows in a public setting is out of character and is likely to cause discomfort for both the person who fails to greet and the person who fails to be greeted. 7 Chisulo, like many others at the clinic, refers to antiretroviral therapy in the plural thus emphasizing the relationships between the actual pills provided to patients and the services surrounding them at the clinic. 8 Operating with very limited resources and unable to reach remote communities, the staff at the ART clinic used outreach VCT clinics not only for testing, but also to find cases and as an entry point to communities. 9 Because the clinic was not funded for outreach work, all its services were provided at the hospital. 10 During my fieldwork, unexpected shutdowns of the clinic rarely occurred. However, staff still remembered the early days, when it was never clear whether the clinic would open, due to shortages in staff and drugs. The threat of unexpected shutdowns still loomed heavy on every occasion in which staffers were dragged from their work in the wards to cover for missing staff at the ART clinic. Staffers would often refer to the threat of shutdowns to explain why they were willing to work a triple shift or skip their day off. 11 Clinical staging is based on an accumulation of clinical signs and symptoms that indicate deterioration of a patient’s immune system. However, some patients may not present according to the guidelines, while still showing signs of progressive illness. For example, a patient may present with substantial weight loss while not necessarily showing other signs of decreased immune function. In other cases, patients do not show signs and symptoms of decreased immunity, although later tests reveal that their CD4 levels are deteriorating. 12 The patient health passport is a document issued by the Malawian Ministry of Health, in which healthcare providers record treatment. Health passports are kept by the patient; they are passed to providers only for the purpose of updates. Shaped like little notebooks, and often replaced by actual notebooks, health passports are possessed by everyone in Malawi, from newborns to the elderly. Health passports are so common in Malawi that an American physician once commented to me that this was what she loved about working in Malawi—the strong sense of order even amid absolute chaos. 13 Most nurses at my clinic asked the patients to hold the remaining pills in the palm of their hand, and they counted the pills together. 14 EMR systems developed for low-resource settings are designed to function in environments with intermittent electricity, no Internet access, and users with limited computer literacy skills.

References Anglewicz, P., and J. Chintsanya. 2011. Disclosure of HIV status between spouses in rural Malawi. AIDS Care 23(8):998–1005. Benton, A. 2011. Exceptional suffering? Enumeration and vernacular accounting in the HIV-positive experience. Medical Anthropology 31(4):310–328. Blaya, J. A., H. S. F. Fraser, and B. Holt. 2010. E-health technologies show promise in developing countries. Health Affairs 29(2):244–251.

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Castro, A., and P. Farmer. 2005. Understanding and addressing AIDS-related stigma: From anthropological theory to clinical practice in Haiti. American Journal of Public Health 95(1):53–59. Dlamini, P. S., T. W. Kohi, L. R. Uys, R. D. Phetlhu, M. L. Chirwa, J. R. Naidoo, W. L. Holzemer, M. Greeff, and L. N. Makoae. 2007. Verbal and physical abuse and neglect as manifistations of HIV/AIDS stigma in five African countries. Public Health Nursing 24(5):389–399. Farmer, P., F. Leandre, J. S. Mukherjee, M. S. Claude, P. Nevil, M. C. Smith-Fawzi, S. P. Koeing, A. Castro, M. C. Becerra, J. Sachs, A. Attaran, and J. Y. Kim. 2001. Community-based approaches to HIV treatment in resource-poor settings. The Lancet 358:404–409. Frenk, J. 2010. The global system: strengthening national health systems as the next step for global progress. PLoS Medicine 7(1):e1000089. Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall. Greeff, M., R. D. Phetlhu, L. N. Makoae, P. S. Dlamini, W. L. Holzemer, J. R. Naidoo, T. W. Kohi, L. R. Uys, and M. L. Chirwa. 2008. Disclosure of HIV status: Experiences and perceptions of persons living with HIV/AIDS and nurses involved in their care in Africa. Qualitative Health Research 18(3):311–324. Jerven, M. 2009. The relativity of poverty and income: How reliable are African ­economic statistics? African Affairs 109(434):77–96. ———. 2012a. Comparability of GDP estimates in sub-Saharan Africa: The effect of revisions in sources and methods since structural adjustments. The Review of Income and Wealth. doi:10.111/roiw.12006. ———. 2012b. For richer, for poorer: GDP revisions and Africa’s statistical tragedy. ­African Affairs 112(446):138–174. Kalofonos, I. A. 2010. “All I eat is ARVs”. Medical Anthropology Quarterly 24(3):363–380. Livingston, J. 2012. Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham, NC: Duke University Press. Maes, K., and I. Kalofonos. 2013. Becoming and remaining community health workers: Perspectives from Ethiopia and Mozambique. Social Science & Medicine 87:52–59. Mamalin, B. W., and P. G. Biondich. 2005. AMPATH Medical Record System (AMRS): Collaborating Toward An EMR for Developing Countries. AMIA 2005 Symposium Proceedings. Mattes, D. 2011. “We are just supposed to be quiet”: The production of adherence to antiretroviral treatment in urban Tanzania. Medical Anthropology 30(2):158–182. ———. 2014. Caught in transition: The struggle to live a ‘normal’ life with HIV in ­Tanzania. Medical Anthropology 33(4):270–287. Milligan, C., and J. Wiles. 2010. Landscapes of care. Progress in Human Geography 34(6):736–754. Mills, E. J., J. B. Nachega, I. Buchan, J. Orbinski, A. Attaran, S. Singh, B. Rachlis, P. Wu, C. Cooper, L. Thabane, K. Wilson, G. H. Guyatt, and D. R. Bangsberg. 2006. Adherence to antiretroviral therapy: A meta-analysis. Journal of American the Medical Association 296(6):679–690. Moyer, E., and A. Hardon. 2014. A disease unlike any other? Why HIV remains exceptional in the age of treatment. Medical Anthropology 33(4):263–269. Murray, C., and J. Frenk. 2011. World Health Report: A step toward evidence-based health policy. The Lancet 357:1698–1700. Rosenthal, A. 2016. “Doing the best we can”: Providing care in a Malawian antiretroviral clinic. Medical Anthropology 35(2):132–146.

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Smith, J. H., and A. Whiteside. 2010. The history of AIDS exceptionalism. Journal of the International AIDS Society 13:47. Trinitapoli, J. 2006. Religious responses to AIDS in sub-Saharan Africa: An examination of religious congregations in rural Malawi. Review of Religious Research 47(3):253–270. Trinitapoli, J., and A. Weinreb. 2012. Religion and AIDS in Africa. Oxford, UK: Oxford University Press. Ware, N. C., J. Idoko, S. Kaaya, I. A. Biraro, M. A. Wyatt, O. Agbaji, G. Chalamilla, and D. R. Bangsberg. 2009. Explaining adherence success in sub-Saharan Africa: An ethnographic study. PLoS Medicine 6(1):e1000011. Weinberg, J. L., and C. L. Kovarik. 2010. The WHO clinical staging system for HIV/ AIDS. American Medical Association Journal of Ethics 12(3):202–206. Wendland, C. L. 2010. A Heart for the Work: Journeys through an African Medical School. Chicago, IL: Chicago University Press. WHO. 2005. Interim WHO Clinical Staging of HIV/AIDS and HIV/AIDS Case Definitions for Surveillance: African Region. Geneva: World Health Organization. ———. 2007. Everybody’s Business: Strengthening Health Systems to Improve Health Outcomes. Geneva: World Health Organization. ———. 2015. Global Health Observatory (GHO) data. World Health Organization. Whyte, S. R., M. A. Whyte, and D. Kyaddondo. 2013. Health Workers Entangled: Confidentiality and Certification. In Morality, Hope And Grief: Anthropologies of AIDS in Africa. H. Dilger and U. Luig, eds. pp. 80–101. Oxford, UK: Berghahn Books. Williams, F., and S. A. Boren. 2008. The role of the electronic medical record (EMR) in care delivery development in developing countries: A systematic review. Informatics in Primary Care 16(2):139–145. Wools-Kaloustian, K., and S. Kimaiyo. 2006. Extending HIV care in resource-limited settings. Current HIV/AIDS Reports 3(4):182–186.

5 Reaching Out for Health Strategies to Improve HIV Care in Village Settings

I never met Blessings; instead, I heard his story from his neighbor in a village in the central region. Blessings was born in the village, went to school, worked in the city for a few years as a laborer, and then returned to the village and married a local woman. Like many rural men, he spent his days farming his land. However, Blessings began to feel ill frequently, and one day, it became particularly bad. His family reached out to all their relatives and friends, and collected the money to take him to the district hospital. There, Blessings was diagnosed with pneumonia and advanced AIDS, and he was released after a few weeks. These were the days before the new universal access treatment policy, and there was no ART to give him. At home, Blessings was still weak and unable to work, and although he recovered from the pneumonia, many other illnesses started to arise. As months went by, his family’s debt to their neighbors grew, and the ability of his loved ones to travel with him to the hospital became limited. Blessings spent the last of his days on a mat outside his house, cared for by his family and with little in the way of medicine. Blessings was only one of many in that village, my friend had said. People in numerous households were severely ill, and it was whispered that many of these people were dying of AIDS. They were dying at home surrounded by their families, without any treatment. There was nothing to be done. The ART rollout announced in 2004 was supposed to represent a dramatic change in the fate of people like Blessings. However, his story remains common in many rural communities. Because the rollout has unfolded slowly in remote areas, access to care has remained tantalizingly out of reach. For Malawians living too far from an ART clinic, or those unable to pay the transportation costs to the hospital, ART was no more accessible after 2004 than it was before the rollout begun.

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Out of the Hospital and into the Village: Rural HIV Care At the time of this study, antiretroviral therapy (ART) was provided primarily in hospital settings, and, due to the limited resources available, the decentralization of care was slow and ongoing. This was a real problem, as only 18% of the population of Malawi lived in urban areas (WHO 2005). The vast majority of ­Malawians live in rural communities, from peri-urban settlements on the outskirts of Lilongwe and Blantyre, to the villages surrounding district towns, to remote areas accessible only by a four-wheel drive vehicle, bicycle, or mule— and only during the dry season. Many of the mobile services were very limited and focused mainly on voluntary counseling and testing (VCT), leaving large ­expanses of rural Malawi with little access to HIV care. As only 54% of ­Malawians lived within 5 km of a health center, and travel was often difficult—if not impossible—the absence of rural services was a major challenge for the ART rollout (Ministry of Health 2004). Moreover, the rural health centers that were scattered throughout the country were minimally staffed and equipped, designed to handle only minor health needs and not HIV care. The problem of reaching HIV-positive patients in rural communities persists today. Malawian policymakers and healthcare providers are well aware of the limitations of hospital-based services and often express the need to expand HIV care by creating more outreach mechanisms. Although data comparing outcomes in rural and urban patients in Malawi are sparse, we know that limited access to centralized treatment locations in rural areas is a barrier to care. For example, one study in a centralized treatment location showed that only 13% of TB patients accepted the invitation to initiate ART (Zachariah et al. 2005, 2006b). Why? The researchers conducting the study found that transportation fees would account for at least 25% of the weekly revenue of most rural patients (Zachariah et al. 2005), making travel to the treatment center a major barrier for most, if not all, rural patients. Not surprisingly, the mortality rates of ART patients at district hospitals serving rural communities are higher than in central city hospitals (Weigel et al. 2012), with early mortality associated with delayed presentation at a health facility or late initiation of ART (Zachariah et al. 2006a). Thus, timely access to care is crucial for the success of ART in rural populations. Recognizing this need early, Malawi put a plan in place to roll out services in remote health centers and posts in 2004, when the universal access policy was announced. Whereas Round 1 of the rollout was focused on central health facilities, big hospitals, and NGO and private clinics that were already providing ART, Rounds 2 and 3 of the national plan were designed to promote decentralization of ART services, to improve accessibility in rural communities. During Round 2, scheduled for the first years of the scale-up and continuing into 2005–2006, new ART locations were to be set up in 38 facilities, most of which were large district hospitals, health centers, and NGO and mission clinics. Round 3 was scheduled to start in 2006 and would expand services at new sites (Ministry of Health 2005). During the process of decentralization, the 60

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public-sector facilities accredited as scale-up sites in 2004 (Libamba et al. 2007) were joined by other public- and private-sector facilities, resulting in a staggering 689 participating health facilities by the end of 2013 (Government of Malawi 2014). However, as often happens in large service rollouts, things did not always go according to plan. ART sites did not always materialize, and the training of healthcare providers has often lagged behind schedule—as might be expected considering the limited resources available to the Ministry of Health. At the time of my work, many challenges stood between rural patients with HIV and regular visits to the district hospital for follow-up and medications. In a country where 76% of the population is reported to survive on an income of under $2 a day (UNDP 2004), long walks, travel costs, and the need to spend a whole day traveling to the clinic and seeing a healthcare provider were some of the major barriers to care mentioned by both patients and providers. Florence, a patient from a remote village who traveled for several hours with her husband to reach the clinic where I worked, talked about the financial considerations that made planning visits to the clinic difficult: Coming every 2 months to take the medications is better than every month, because sometimes we lack transport money. That way we have enough time to find money for transport. If we do not have transport money, we come on foot and there is a distance. As of now I don’t have any business. I am a farmer, and it’s through farming that I find transport money. But if I don’t find the money, I borrow a bicycle from my parents so that someone can ride me. Most of the dates I come with my husband, but it is far. Transport can be difficult because maybe it rains throughout the night. It can be difficult for me to come because the road is bad with the rain. The crowd at the clinic and the possibility of the clinic opening late compounded the difficulty of the long and time-consuming trip for patients. Chikondi, a man in his 40s who made sure to arrive at the clinic before it opened to secure a good spot in line and return home before nightfall, commented: Some people come from long distances when we come here, and they [the workers at the clinic] start working very late, and we go back home late. So maybe you don’t have money so that you can buy food while here, but if they can help us at a good time and go back at a good time it can be good. Both Florence and Chikondi traveled long distances to arrive at their appointments at the ART clinic, and both had to navigate a lack of funds for transport, as well as the need to travel on poorly maintained roads, especially during the rainy season. Furthermore, their financial difficulty was not only limited to the need to find money for transportation to the hospital. The long days of traveling and waiting at the clinic required patients to secure funds for food on the road or at the hospital, and also prevented them from working. Collectively, these costs

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could make accessing free treatment at the district hospital quite expensive, and they represented a deterrent for many patients. Thus, the demand for village-level care was definitely present. Charity, a patient at the same ART clinic, explained: I heard that in another area, which is far from here, they have started sending treatment to [outreach] clinics. It’s good to start ART treatments in these [outreach] clinics. People from remote villages are coming here, and this clinic is small, so because of congestion some people were waiting outside. Also, an outreach clinic can help save on transport money. We need to have ART treatments close to home. Yeah, so I can walk on foot. However, for most of the period described in this book, rural decentralized ART clinics were few and far in between. In locations where rural health centers were starting to provide ART, patients were rumored to shift their care to the new closer facilities. As noted in the previous chapter, though, care close to home bore the risk of unwanted HIV status disclosure; thus, both patients and providers emphasized that new rural HIV clinics had to be not only accessible, but also reliable in terms of protecting patient confidentiality and providing consistent, quality care.

Local Networks of Care: How Village Communities Help Themselves In the absence of formal medical care in most rural communities, other sources of support sprang up in the villages.1 These sources of care and support were crucial to people living with HIV and their families. Because many of these organizations were informal, they were not necessarily registered as service providers; thus, it was difficult to assess the extent of their activities or the number of clients benefiting from their services. Nevertheless, with one or more of these groups in nearly every village, these organizations undoubtedly reached a large proportion of residents suffering from HIV and were an important part in the rural landscape of care. Whether organized as communal initiatives or based on the work of NGOs, many of their activities had a financial component involving microfinance schemes, either between members or with outside organizations.2 However, even community-based initiatives without financial components—­ organizations that provided after-school lunches to orphans living with poor or elderly relatives, or that cared for the chronically ill in the village, for example— were sometimes supported by government grants. Many initiatives were founded by community members, with the hope that their organizations would attract either government or international NGO funding in the future. Mary, a woman who established a support group for people living with HIV/ AIDS that eventually gained support from an NGO, recalled:

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This community-based organization started as a result of the HIV/AIDS impact that was afflicting the community. I became HIV positive. I knew of my secret in 2002, but because we lacked any support system in the community, I had a very difficult time accessing any assistance or maybe getting into an antiretroviral program. When I started recovering, getting better, I thought of coming together with some of my friends to start a support system so that we can support all the other people having this problem in the community. She continued: So this club’s primary objective is to look after those who are clinically ill, and the bed ridden, by providing support in the homes. But also by providing psychosocial support to children, especially orphans, because when children lose one of their parents, it becomes very difficult for them. We started from basically four of us, me and my sister and two others who are also HIV positive, and then we talked to some other women. Then the group kept on growing, until we were about 40 women, and since we had no money to do anything we started contributing our own money. These organizations operated alongside the government-sponsored ART programs, and in many cases, they preceded the government’s treatment initiative; however, the mechanisms of support they provided did not include treatment. Instead, they offered support services that the government clinics were unable, or were not designed, to provide. In many ways, these organizations can be seen as taking on the role of the non-existent welfare system in Malawi, by drawing on family and community ties to strengthen the network of support for patients and their families. Although some community-based care organizations were lucky to receive financial support for their work, most were self-funded and operated independently from the government or NGOs. Almost all community activists acted on a volunteer basis. Some care groups built on the model of women’s self-help groups (Zithandizeni), which have existed in the villages for some time. Self-help groups offer women opportunities to gain social support and to learn trades and expand their social networks by participating in microlending schemes or small business ventures with other women. Many of these groups are initiated by NGOs—­local, national, or international—and participation has become common in rural Malawi. Grace, a widow in her 50s and a leader of a rural women’s group in the central region of the country, explained: We have a group of women and we teach each other different things. The women coming here go back to their villages and teach other women, and that’s how we reach hundreds of women with information on health and work. AIDS changed everything, and women and children are hurting the most. In the group we help each other.

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Moreover, women describe their participation in such groups as part of their role as providers in a time of poverty and disease. According to Grace, People don’t appreciate women’s work. It’s not that a man can’t be a good provider, but still the woman is in charge of raising children and feeding [the children], and if a mother is not doing the job then the children will not be healthy in the body and the head. I fed 15 children from my garden. That’s why women need to help themselves, and that’s what we try to do in the group. The ubiquity of these groups and the dedication of their members show that rural communities have tried to respond to the AIDS epidemic as best they can by drawing on existing support structures, and some individuals have gone to heroic lengths to keep the fabric of their communities intact. However, a care vacuum clearly persists and must be addressed if the 82% of Malawians who live in rural areas are to receive access to ART. Although village-based organizations should be supported, and even expanded, in their quest to provide patients with welfare and care support, they cannot and will not replace the local treatment programs that are currently missing in many rural areas.

A Possible Model for Rural HIV Care: The Under-Five Clinic

It was not yet noon, but the sun was already heavy in the sky as David, a health surveillance assistant (HSA), stood in front of the women sitting under the big tree outside the village headman’s house. Many of the women were holding their young children, their babies secured safely on their backs. It was under-five clinic day, and some of the women had walked long distances to see the healthcare workers at the clinic. For most of these women, the under-five clinics—which take place not only at central rural health centers, but also in various locations in remote rural communities— were the most accessible health service available. That day, David was talking to the mothers who attended the clinic about family planning, or “child spacing,” as it is more commonly known. David asked the women to name the various forms of contraceptives they knew, and he reminded them of the importance of spacing their pregnancies. This contradicted a phrase echoed by many women: “I will receive what comes from God.” David talked about the difficulty of feeding and taking care of many young children at the same time. He also urged the women to think about the future and their inability to pay school fees for many children simultaneously.3 Because many of the women attending the clinic had multiple young babies and toddlers with them, one might predict that David’s message would be controversial. However, the

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atmosphere remained light and friendly. After a short pause, David looked at the women in front of him with a big smile and said: “If you women continue to be pregnant all the time, we, men, will leave you and look for younger women because you will not be pretty anymore.” The women and the health workers burst into laughter. Later, David would say to me: “It is important to joke when you are talking about family planning, though some women will tell you it is not really a joke.” David and the women and children attending his clinic were taking part in a regular ritual in Malawi: the under-five clinic. At under-five clinics, staff vaccinate and monitor the weight of children under the age of 5; indeed, HSAs in outreach clinics deliver 60–80% of vaccinations in the country (Richardson et al. 2009). Clinic staff also provide health education to the children’s mothers. Here, I argue that although there are not many models for outreach-based HIV care in Malawi, the under-five clinic offers a model to potentially emulate. It is true that HIV care differs in important ways from maternal and child health services. However, both services must operate with extremely limited resources in a fragmented health system. Thus, the under-five clinic—a model of outreach care that has been operating in the country for decades and has gone through numerous ­iterations—may be helpful in framing some aspects of outreach care for HIV. As is true of the HIV rollout, under-five clinics are made possible by task shifting. The clinics are run by HSAs like David, high school graduates trained by district health authorities and the Ministry of Health. Their training includes nutrition, vaccine handling, and basic public health education in the areas of sexually transmitted infections, family planning, malaria prevention, clean water maintenance, and children’s health.4 Although HSAs are part of Malawi’s health workforce, they represent the lower echelon of health professionals and suffer from the employment instability, lack of advancement opportunities, and low pay discussed in previous chapters. At the same time, their weak position within the healthcare system makes them ideally situated to provide care in remote rural communities, as they are part of those communities and thus more accepted by potential patients (Nyirenda and Flikke 2012). Nurses do not, in most cases, take part in the outreach under-five clinics; instead, HSAs represent the highest professional authority. In addition, like much HIV care, under-five clinics rely heavily on the work of volunteers. HSAs collaborate with “village coordinators,” male community elders appointed by village headmen or an elders’ council to assist in managing and coordinating the clinic’s activities. Village coordinators inform all village households about the clinics and ensure the participation of all mothers of young children. In most cases, male HSAs and village coordinators are the only men present at the clinics. The under-five outreach clinics that target more remote communities are held approximately once a month in every village or cluster of villages. Village

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clinics are held at the same location every month, usually in a central area near the headman’s house, the school, or another known meeting point. The clinic’s schedule is also routine. Women and their children gather at a designated hour, generally in the morning. Many women bring more than one child to the clinic, including older daughters who help carry their younger siblings. Women frequently arrive long before the HSAs and form a line by placing their belongings in the area where the weighing will take place. Meetings start with a prayer, led by one of the women with the HSA’s encouragement and joined wholeheartedly by the women attending the clinic. After the prayer, the women sing a few songs with messages involving children’s health, nutrition, and family planning. The cheerful singing often involves clapping and bursts of laughter, which often return during the clinics’ proceedings. After singing, a class is given by a senior HSA. The content of the classes usually involves messages regarding nutrition and children’s health, with special attention to malaria prevention and family planning. The class is run as a series of questions and answers, and ends by summarizing the main messages of the day. Many of the questions asked during the class are cloaked in humor and are answered in laughter. In one family planning class, the message was that animals keep having babies, but people should remember child spacing for the benefit of their family and themselves, a frequent theme in classes discussing family planning. When the class is over, the women form a line in front of the mobile scales hung by the HSAs to have their children weighed. Although the process of weighing may be a lengthy one, and not very pleasing to some of the babies, the line is well preserved by the women, who chat happily while they wait. The clinic’s soundtrack is a mélange of conversation, laughter, and children’s chirps and cries. Children suffering from malnutrition are identified at this stage. If mild malnutrition is diagnosed, the mother is advised what foods to provide, and if donations are available, she may receive some food items from the clinic’s staff. In the case of a severe case of malnutrition, the mother is advised to go to the district hospital. In addition, the HSA in charge of surveillance refers women with children in need of vaccinations to the HSA in charge of vaccinations. After all of the children are weighed and vaccinated, the HSAs gather their equipment and head back to the clinic, where they will update their surveillance books and store the remaining vaccines. On occasion, they hold a meeting to discuss problems encountered during the clinic, such as supply shortages or a lack of cooperation from village coordinators. Finally, the tallies from the clinic are reported to the district and national health authorities.

The History of Under-Five Clinics in Malawi Under-five clinics in Malawi were established in the early 1970s on the basis of calls from David Morley (1973a), a British physician, to provide “comprehensive child care” that combined preventive and curative services and was administered

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by auxiliary health professionals. The clinics were intended to reduce malnutrition and improve nutrition-related knowledge, prevent infectious diseases, and raise the quality and quantity of health services in the country. Although health services at the time suffered from limited resources, overcrowding, and shortages in the health workforce, the Malawian government prioritized the development of pediatric health programs. With similar programs already operating successfully in neighboring Zambia, it was assumed that such programs would work well in Malawi as well (Cole-King 1975). International aid organizations operating in the country supported the programs financially and professionally, and provided training to local health workers. Although these services were initiated as development and aid projects, the under-five clinics are currently integrated into healthcare delivery chains as pediatric and immunizations services. Under-five clinics have historically served remote populations and provided services both inside and outside health centers (Ministry of Health 2004). Information on vaccinations and nutrition that is collected in the clinics is recorded and submitted monthly to the health authorities charged with district and national surveillance of health efforts and outcomes (Pelletier and Johnson 1994). As a result, these outreach services not only provide immunizations and nutritional monitoring, but they are also a much-needed source of health data that would otherwise go unrecorded. Although the quality of these data has sometimes been contested, even by the health providers themselves, the under-five clinics have unequivocally yielded more and better data than existed before. The nature and proven record of under-five clinics in Malawi make them an attractive model to emulate. First, HSAs in outreach clinics provide most of the immunization services in the country (Nyirenda and Flikke 2012). Although national immunizations fluctuate from year to year (Chee et al. 2008; National Statistical Office and ICF Macro 2011; Nyirenda and Flikke 2012), they have been on the rise since the 1970s, when the clinics began. Thus, the clinics have demonstrated effectiveness at their core task. Second, both the ideology of service integration, based on Morley’s notions of “comprehensive child care” comprising preventive and curative services, and the idea of reaching out to ­remote communities and providing services at patients’ doorstep are helpful models when thinking about the next step of the ART rollout.

The Strengths and Weaknesses of Under-Five Clinics Under-five clinics are not perfect. Clinics may last the whole morning, depending on the number of women and children and the duration of the vaccination process. Moreover, because clinics are held at the center of the village, or in a central village in a cluster of villages, women’s attendance often involves very long walks, up to 10 or 15 km, with one or more babies and toddlers. These babies and toddlers may grow impatient as the day unfolds. Moreover, mothers may feel pressure to return to the household chores they left behind; a morning spent in the clinic is a morning in which no work is done in the household and other

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children must be entrusted to neighbors and relatives. Thus, attendance demands that women take an active role and place the clinics at the top of a never-ending list of chores and obligations. As if that is not enough, the outreach locations are often outside, due to a lack of available buildings, so the clinic experience may include heat, rain, and insects. It is difficult to estimate the attendance rate at under-five clinics, as no countrywide census of health service use is available. However, village volunteers are tasked with informing all households of the clinics’ dates and location. In addition, community leaders, as well as HSAs, have talked to me about the importance of peer pressure in clinic attendance and mentioned the role of community elders, as well as other mothers, in encouraging attendance. Thus, it is likely that all village members are aware of the clinic times and that most eligible families participate. However, as for many other activities, marginalized members of the community are less likely to participate, as are households in which the primary caregivers are elderly women caring for multiple children (Rosenthal 2012). ­A lthough the methods of promoting attendance at under-five clinics appear relatively thorough and effective, they could be improved further by facilitating the attendance of the most vulnerable in the village. In addition, linkage to care for problems too complex to be dealt with at the clinic is weak. For example, in reference to the standard practice of advising the mothers of severely malnourished children to seek help at the district hospital, one HSA remarked: “Many of these people are so poor that they can’t afford the fares to the hospital, and they would probably just take the child home, and we don’t have a car to take [the child] there.” Similarly, when a child is suspected to suffer from a severe illness, or a developmental problem, parents who are too poor to pay for transportation or medications may be unable to pursue a referral to a more central health facility. The clinic’s limited resources stand in the way of linking children and their parents to care that goes beyond the under-five ­service’s capacity, and many patients are too poor to secure those services on their own. Perhaps it is not surprising, then, that although under-five ­clinics have clearly improved vaccination rates, evidence that they have improved other ­outcomes—outcomes that require more concerted effort from the medical system—is harder to pin down. For example, malnutrition and stunting are still common in Malawian children, and maternal deaths remain frequent, even though clinics address issues such as the risk of frequent pregnancies and the importance of prenatal care (WHO 2015a). Importantly, immunization coverage alone is not sufficient to improve health, given the other health challenges present (Bowie et al. 2006), and available data from rural Malawi do not necessarily point to an improvement in women and children’s general health status over the life of the under-five program (National Statistical Office and ORC Macro 2005). Finally, as mentioned above, the model for under-five clinics, which relies on HSAs with insecure professional status and volunteers, may be viewed as exploitative, similar to the structure of the ART rollout, discussed in Chapter 3. HSAs undoubtedly occupy the lower echelon of health workers (Nyirenda and

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Flikke 2012) and are a part of the social strata that Swidler and Watkins (2009) call the “aspiring elites”: young, secondary school-educated villagers trying to use their education as a stepping-stone from the lives of subsistence farmers to those of formal employees. For example, after David, the HSA mentioned at the beginning of this section, secured a position as an HSA, the life he led with his schoolteacher wife, Chifundo, improved relative to when they had lived in a village. Unfortunately, many HSAs find themselves in a precarious social position in which “by village standards, they are educated elite; by the standards of the elites who work for NGOs in the capital, they are not sufficiently educated…” (Swidler and Watkins 2009:1188). The dream of a better job often fails to materialize, as HSAs’ training is very limited, conscribing the opportunities open to them in the health system. Their limited training also means that they can easily be replaced by more broadly trained healthcare professionals (Nyirenda and Flikke 2012). Thus, the bright future that many HSAs hope this government job will deliver frequently remains forever out of reach. Similarly, the elders acting as volunteer village coordinators must balance their appreciation of the benefits of the clinics with the time required to help run them. The benefits of the clinic for the coordinators go beyond ensuring that the children in their community are immunized. Community care activities like these are a channel through which leaders can maintain and enhance their social standing. Thus, leaders who play a role in responding to people’s needs, initiating activities, and regulating behaviors are able to assert their leadership and secure their position in their communities. Village coordination is therefore a triple opportunity for a village elder to better the health of the village’s children, reinforce his leadership, and attain a unique social standing and authority over other members of the community. This convergence of the interests of the elders and the under-five clinic can be one of the clinic’s major strengths. However, relying on such convergence for service delivery can be a weakness if it fails to materialize. On clinic days, for example, the coordinators cannot cultivate their fields and must remain in the village to oversee clinic procedures, providing one compelling reason for them to opt out. Moreover, this structure can reconstruct social patterns of exclusion when interests are not aligned. The weakest members of the communities, and the ones who are already marginalized for social and economic reasons, may be overlooked when health processes are led by the same local leaders who are responsible for their marginalization in the first place (Rosenthal 2012, 2015). Why do mothers come to the clinics, in spite of the clinics’ limitations? First, the clinics present an opportunity to secure healthcare services for their young children. Second, the clinics are an opportunity for women to broaden their social networks, interact with other women, and foster broader social relationships outside their kinship group. And third, when donations are available, the clinics provide women with much needed material assistance, such as maize flour, cooking oil, and beans. “I come here to be a good mother and to learn, so I will know more,” one woman said to me.

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The under-five clinic’s status as one of the only services provided in rural communities, and the convergence of interests that stands at the heart of the clinic’s operation—each of these factors represents both the greatest strengths and weaknesses of this model. When interests are aligned, the clinic can be a hub of health and welfare activities; however, the reliance on this convergence of interest between mothers, health workers, and village elders may severely limit clinic activity when cooperation fails to materialize. In many ways, the under-five clinics strike a fine balance between making a service available in remote rural communities and requiring some real effort on the part of clients, health workers, and other community members.

Applying the Under-Five Model to HIV Care Delivering services to rural communities is the next step of the rollout (Ministry of Health 2005). Extending ART services to rural communities, especially the remote ones, will help patients initiate and adhere to treatment by eliminating transportation costs, one of the major barriers to care. The history and application of under-five clinics, as well as their relative success, may offer a few valuable lessons for the ART rollout. Morley’s (1973a,b) notion of comprehensive preventive and curative care has the potential to reap benefits well beyond the pediatric population. For example, outreach clinics that provided HIV prevention services, testing, and treatment, as well as nutritional support and care for the other health needs of people living with HIV, would not only improve patient adherence and outcomes, but they would also improve the overall health of the population they serve. Several of the practices employed by the under-five clinics may work well for outreach ART clinics as well. Building on the commitment of community health workers and other auxiliary workers, and their strong relationships with communities, would benefit services far beyond under-five health. Incorporating more options for task shifting, such as the inclusion of lay health workers as counselors and treatment supporters, would allow outreach ART clinics to offer services to more patients. In addition, adopting the reliable “same day, same place” arrangement of the under-five clinics would help nurture long-term, trusting relationships between the clinics and the communities they serve. This is not to say that the adoption of this model would be easy, or without faults. Funding, staffing, and physical inaccessibility are major barriers and should not be minimized. However, because Malawi’s universal access policy envisioned decentralization as part of the ART rollout from its inception, it is helpful to think of operational models that support this aim. Using trained health workers to bring services to the patients may be the inevitable next step in the massive rollout of health services planned. And, the methods by which a central health facility sends its outreach staff to provide services in remote areas, as is done in under-five clinics, may be helpful in thinking about decentralization.

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However, should this model of healthcare delivery be adapted to HIV care, we should be wary of its potential pitfalls, the better to avoid them. For those ART patients who are doing well and only need to fill a prescription, the outreach clinic could serve as a point of delivery that is simple and direct, without the complexities of unnecessary services. However, outreach HIV clinics must also provide good linkage to care, to prevent patients with complex needs from falling between the cracks. In addition, the health workforce operating the service should be trained to provide more than a minimal basket of services. For example, community health workers could be employed as adherence counselors responsible for tracing individuals who have defaulted from care (Zachariah et al. 2009). Finally, these services should be professionalized, minimizing the reliance on untrained workers and volunteers. It will be crucial to provide all health workers, including HSAs and other community health workers, with quality training, stable employment, and advancement opportunities. With careful planning and continued commitment, a reliable and professional outreach service could be one of the solutions to expanding Malawi’s national rollout of ART.

Conclusion Malawi’s massive ART rollout not only brought treatment to hundreds of thousands of people, but it also revealed major healthcare delivery challenges. No other effort in the field of health in sub-Saharan Africa has been as ambitious or as expensive as the goal of extending HIV care. The goal of universal access to care that was enshrined in the Malawian national treatment policy demanded a shift in focus to areas often neglected by health policies, namely remote rural communities. The success of the new treatment policy thus far has been unprecedented: The number of ART centers has increased from 60 public-sector facilities at the program’s initiation to 689 health facilities by the end of 2013 (Government of Malawi 2014), and ART centers went from serving a few thousand patients in 2004 (Ministry of Health 2005) to over 500,000 patients in 2015 (WHO 2015a). However, with only 50% of Malawians in need able to access services (WHO 2015a), the war on AIDS is far from over, and the next front requires a new weapon: decentralization. The 2015 WHO recommendations to treat all persons who are HIV positive, regardless of their disease progression (WHO 2015b), will create an even larger patient population than the one that Malawi is currently struggling to serve. This makes decentralized ART service delivery even more pressing, and existing models of healthcare delivery in rural settings, such as the under-five clinics, should be explored and exploited. The past experiences of immunization, nutrition, and eradication programs in delivering services to rural patients may point the way for the next steps in Malawi’s ART rollout—and similar rollouts in other countries. Using every bit of knowledge that we can glean to reach out to patients in remote communities is not only just, but it is the only way to achieve the goal of universal access as well.

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Notes 1 Parts of this chapter were adapted and revised from Rosenthal (2015). 2 Over the years, the struggle against HIV became linked with the fight against poverty. Thus, various programs have encouraged financial independence to support both people living with HIV and members of rural populations living in extreme poverty. In many of these programs, patient support involves promoting microfinance schemes as income-generating activities for people living with HIV, and their families. Thus, these two big passions of international development (microfinance and AIDS) have been co-opted by the same programs. 3 Although primary education in Malawi is public and free of charge, secondary ­education requires school fees. Even primary education carries some costs, in the form of school uniforms and equipment. 4 Although the under-five clinics were established in the 1970s and predate the age of global health policy, they were quickly adopted into new structures of health, both in the service of pediatric health and as a strategy to disseminate other health messages and opportunities that would not otherwise reach remote communities. Over the years, the clinics’ programs started addressing not only pediatric health, nutrition, and vaccinations, but also messages concerning family planning and HIV prevention.

References Bowie, C., D. Mathanga, and H. Misiri. 2006. Poverty, access and immunization in Malawi. Malawi Medical Journal 18(1):19–27. Chee, G., V. Moldrem, N. Hsi, and S. Chankova. 2008. Evaluation of GAVI Phase 1 Performance. Bethesda, MD: Abt Associates Inc. Cole-King, S. M. 1975. Under-fives clinic in Malawi: The development of a national programme. Journal of Tropical Pediatrics 21(4):183–191. Government of Malawi. 2014. Global AIDS Response Progress Report (GARPR): ­Malawi Progress Report for 2013. Libamba, E., S. D. Makombe, A. D. Harries, E. J. Schouten, J. K. Yu, O. Pasulani, E. Mhango, J. Aberle-Grasse, M. Hochgesang, E. Limbambala, and D. Lungu. 2007. Malawi’s contribution to “3 by 5”: Achievements and challenges. Bulletin of the World Health Organization 85(2):156–160. Ministry of Health. 2004. A Joint Programme of Work for a Health Sector-Wide ­Approach (SWAp) 2004–2010. ———. 2005. Treatment of AIDS: A Five-Year Plan for Provision of Antiretroviral Therapy and Good Management of HIV-Related Diseases to HIV-Infected Patients in Malawi 2006–2010. Morley, D. 1973a. Paediatric Priorities in the Developing World. London: Butterworth & Co. ———. 1973b. The spread of comprehensive care through under-fives’ clinics. Transactions of the Royal Society of Tropical Medicine and Hygiene 67(2):155–164. National Statistical Office, and ICF Macro. 2011. Malawi Demographic and Health ­Survey 2010. National Statistical Office, and ORC Macro. 2005. Malawi Demographic and Health Survey 2004. Calverton, MD: NSO and ORC Macro. Nyirenda, L., and R. Flikke. 2012. Frontline vaccinators and immunisation coverage in Malawi. Forum for Development Studies. doi:10.1080/08039410.2012.725676. Pelletier, D. L., and C. F. Johnson. 1994. The validity of clinic-based nutrition surveillance data: A study from selected sites in northern Malawi. Food and Nutrition Bulletin 15(4):308–319.

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Richardson, F., M. Chirwa, M. Fahnestock, M. Bishop, P. Emmart, and B. McHenry. 2009. Community-based Distribution of Injectable Contraceptives in Malawi. ­Futures Group International, Health Policy Initiative, Task Order 1. Rosenthal, A. 2012. Weaving networks of responsibility: Community work in development programs in rural Malawi. Medical Anthropology 31(5):420–437. ———. 2015. Mother, child and community in rural Malawi: Security-seeking behavior and the role of under-five clinics. Anthropologica 57:511–523. Swidler, A., and S. C. Watkins. 2009. “Teach a man to fish”: The sustainability doctrine and its social consequences. World Development 37(7):1182–1196. UNDP. 2004. Human Development Report 2004. United Nations Development Programme. Weigel, R., J. Estill, M. Egger, A. Harries, S. Makombe, H. Tweya, A. Jahn, and O. Keiser. 2012. Mortality and loss to follow-up in the first year of ART: Malawi National ART Programme. AIDS (London, England) 26(3). doi:10.1097/QAD.0b013e32834ed814. WHO. 2005. Malawi: Summary Country Profile for HIV/AIDS and Treatment Scale-Up. World Health Organization. ———. 2015a. Global Health Observatory (GHO) Data. World Health Organization. ———. 2015b. Guideline on When to Start Antiretroviral Therapy and on Pre-exposure Prophylaxis for HIV. World Health Organization. Zachariah, R., M. Fitzgerald, M. Massaquoi, O. Pasulani, L. Arnould, S. Makombe, and A. D. Harries. 2006a. Risk factors for high early mortality in patients on antiretroviral treatment in a rural district of Malawi. AIDS 20(18):2355–2360. Zachariah, R., N. Ford, M. Philips, S. Lynch, M. Massaquoi, V. Janssens, and A. D. Harries. 2009. Task shifting in HIV/AIDS: Opportunities, challenges and proposed actions for sub-Saharan Africa. Transactions of The Royal Society of Tropical Medicine and Hygiene 103(6):549–558. Zachariah, R., A. D. Harries, M. Manzi, P. Gomani, R. Teck, M. Phillips, and P. Firmenich. 2006b. Acceptance of anti-retroviral therapy among patients infected with hiv and tuberculosis in rural Malawi is low and associated with cost of transport. PLoS One 1(1):e121. Zachariah, R., R. Teck, O. Ascurra, P. Gomani, M. Manzi, P. Humblet, P. Nunn, F. M. L. Salaniponi, and A. D. Harries. 2005. Can we get more HIV-positive tuberculosis patients on antiretroviral treatment in a rural district of Malawi? The International Journal of Tuberculosis and Lung Disease 9(3):238–247.

6 Conclusion A Lesson in Healthcare Delivery: How Global Policy Translates into HIV Care, and What We Can Learn From It

I was on a flight from Boston to San Francisco when I realized the ART rollout in Malawi was a story worth telling. As often happens on flights, the passenger next to me was trying to strike a friendly non-committal conversation by asking what business was I in, and since “the business of medical anthropology” doesn’t really compete with banking or insurance, I found myself talking about ART in Malawi. Trying not to sound overly dramatic, I told my fellow passenger of AIDS in a country that had no treatment. I spoke about crumbling hospitals and people living in poverty. And, I spoke of the hope that was kindled with the rollout of HIV treatment. When the conversation died down (the guy was, after all, a banker…), I went back to my laptop, but I was no longer reading the article in front of me. I was thinking about this book. After this conversation, I started talking to people about what I have seen in Malawi in an attempt to figure out what this book would be about. How does one tell the story of a massive national ART rollout? How can one do justice to the experiences of patients like Mphatso and Justina? Or, the thoughts and ideas expressed by healthcare professionals like Grace the nurse, and Dr. Pierre? And, no less important, what kind of framework would allow me to include all these narratives, as well as information about historical moments and shifts in policy? I started testing out my ideas on the people I met. Some of them wanted to know why Malawi was hit so hard by AIDS. Others wondered why it was so difficult to treat people, now that the drugs were available. More than once, I encountered prejudices about corrupt African politicians and lazy health workers, and I found myself trying to stay calm as I recounted the hardships that came along with being a health worker in rural Malawi.

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But, not all conversations were frustrating. Colleagues from sub-­ Saharan Africa and beyond told me about their experiences providing ART in resource-limited settings. They recounted endless lines of patients in the waiting room, they explained the effects of drug stock-outs on patients’ trust, and they joked bitterly about broken-down clinic buildings and impassible roads and retold their patients’ stories with passion and compassion. These stories came from various countries and counties, but one theme was weaved throughout—hope. These conversations, both the frustrating ones and the heartwarming ones, emphasized the importance of understanding the story of Malawi’s ART rollout in its broader context: the persistent challenges of healthcare delivery. They also stressed how valuable such an analysis could be, not only to achieve a better understanding of this particular moment in Malawian history, but also to understand how global health policy works— from the global, to the national, to the district, to the village, and even to the individual patient. Such an analysis was also an opportunity to look closely at the moments when these policies fall apart. Those moments were all too familiar: the nurse in the rural clinic standing in front of a patient with no medications, the hospital laboratory that lacked the sophisticated equipment needed to perform routine tests, or the sick village man who just would not go to the doctor. But, on the flipside, there were all the eureka moments: the new medications, the remarkable discoveries, and the thousands of people in labs and libraries worldwide coming up with innovations unthinkable a decade ago. And, there was one more thing, unthinkable only a decade ago; there was money. Not enough money, it is true, and the supply was definitely not stable; but finally, there was a promise and a belief that the lives and health of people living, and dying, in poor countries were worth the effort. This book is about all the things I wanted to tell the banker on the flight to San Francisco. Framing the ART rollout in Malawi as an issue of global health policy and healthcare delivery allowed me to invite Mphatso, Justina, Grace the nurse, Dr. Pierre, and many others to tell their stories. In these pages, they share their experiences of living and working in an environment shaped by changing policies, historical decisions, and everyday life challenges. This book is the story of an amazing success, and the challenges that reveal themselves when we start doing what was recently considered impossible. But, more than anything, this is a story about hope and action.

In 2003, a year before the ART rollout was announced, the World Health ­Organization (WHO 2015a) estimated that over a million Malawians, roughly 10% of the adult population, were HIV positive. Virtually none of them was receiving treatment. Massive campaigns run by the government, local non-­governmental organizations (NGOs), and international agencies spread the gospel of prevention

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while remaining silent about the treatment options available to people in affluent countries. Although voluntary consulting and testing clinics encouraged Malawians to get tested for HIV, only advice was dispensed to those with positive results, and that advice was often of little use. People were simply told to take care not to pass HIV to their sexual partners and to pay attention to their diet and general health. In a country suffering from extreme poverty and very limited health infrastructure, people like Blessings, mentioned in Chapter 5, died at home surrounded by family, with very limited, if any, medical care. For Blessings, and hundreds of thousands of others, AIDS was a death sentence. The launch of the ART rollout in 2004 transformed HIV care in Malawi. New government-sponsored HIV clinics joined the very limited pool of health outlets that had been providing HIV care for a hefty price. In addition, treatment was free of charge in all public facilities, and fees were limited in private ones (Makombe et al. 2007; Muula et al. 2007). By the end of 2013, nearly 700 health facilities were providing HIV care (Government of Malawi 2014). For many of the people who appear in this book, the new HIV treatment policy was a lifesaver. Mphatso realized that the disease she feared the most was not the death sentence she had dreaded, and she was able to go back to her family and her maize garden. Children like Leoni and Joel were diagnosed and treated at a young age, so they were able to live lives much like their peers. Teenagers like Flora came of age in a world in which HIV treatment was a fact of life. The tragic fate of Blessings, who died untreated, was no longer the only possibility for people living with HIV in Malawi. And, this change did not only occur in Malawi. In 2013, 11.7 million people in low- and middle-income countries secured access to ART (WHO 2015a), a shift into care unparalleled by any other public health intervention in sub-­ Saharan Africa. Indeed, as discussed in previous chapters, the groundbreaking financial commitment and political will forthcoming from both the international donor community and the countries receiving aid led to shifts in global health policy that have forever changed the global health system and its modus operandi. This unity in the face of the HIV epidemic represents a remarkable achievement. No less remarkable is the commitment shown by healthcare professionals in Malawi and worldwide. The dedicated individuals who allowed me to shadow them during their exhausting workdays and who shared their thoughts and experiences in this book are only a few examples. Around the country, experienced nurses like Grace and young nurses like Margaret are managing unimaginable caseloads, while clinical officers like John and surgeons like Dr. Pierre are treating complicated illnesses in less-than-ideal circumstances. Their work is remarkable, and this book is, in many ways, an ode to their commitment. However, even though we have come a long way from the days of prevention-­ only programs, we still have a long way to go. The infrastructure and human resources for providing ART are still lacking, and treatment is still unavailable to 50% of Malawians (WHO 2015a). And, the challenge of providing ART to all

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in need is about to get more challenging, as the WHO (2015b) has recommended a shift to “test and treat” policies in which ART is provided to all HIV-positive patients instead of only those who meet certain criteria, such as a very low CD4 count. By analyzing and reflecting on the experiences of recent years, we can prepare for a future in which HIV infection is treated efficiently and becomes a chronic and manageable condition. In this book, I used ethnography to investigate the ART rollout in Malawi. Ethnography is a means of investigating the intersections of scientific innovation, healthcare policy, daily practices, and personal lived experiences; here, I have used it to explore the various forces shaping the rollout, from the global to the national to the district to the village. Going back to the metaphor discussed in the Introduction, I have employed ethnography to follow the glass of water, from its origin as an idea in policymakers’ minds, to its physical journey from a river or spring, through a maze of pipes, to a tap, into a glass, and finally to a person’s mouth. By exploring people’s stories at each point along the journey, I have tried to learn something about how a glass of water makes its way to the thirsty person who needs it—or how it fails to do so. The personal narratives and experiences of patients and healthcare providers woven throughout this book tell the story of crisis and change in AIDS-stricken Malawi. They are also an invitation for practitioners and policymakers in other countries to think about the promises and challenges of ART rollouts in their own nations. Here, in the Conclusion, I reflect on these stories and venture to draw out a few important lessons. In particular, I use the ethnographic perspective to ask three broad questions: (1) What are the challenges of HIV care delivery in resource-limited settings, (2) How can we understand HIV care delivery successes in these settings, and (3) How can we do better?

The Challenge of HIV Care Delivery in Resource-Limited Settings I will start with the challenges of HIV care delivery in resource-limited settings, as these challenges were numerous and featured prominently in the stories of both patients and providers. Here, I discuss these challenges in the context of four themes: human resources, infrastructure, policy problems, and trust. These themes operate in concert, of course, and although they are discussed separately, they should be understood as related components in the same healthcare delivery chain.

All Hands on Deck: The Human Resources Challenge One of the most obvious challenges facing healthcare delivery in Malawi is the shortage in the health work force, which was the subject of Chapter 3 and also an overriding theme of the subsequent chapters. This shortage has several causes, many of which apply to other resource-poor countries as well. Malawi’s low resource base limits the government’s ability to invest in training new healthcare

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professionals. In addition, high rates of HIV morbidity and mortality, exacerbated by shortages of the supplies necessary to protect against infection, have decimated existing staff. Finally, poor working conditions and low salaries in the public sector lead to both internal and international brain drain (McCoy et al. 2008). Think back to Chapter 3, in which we met Gift, the overworked clinical officer, and Margaret, the young nurse who joined the ART clinic immediately after completing her training. They are both young health professionals dealing with immense pressure to provide services in substandard conditions. Their presence at the clinic is already a huge victory in a country struggling to find, train, and retain health professionals, but how much longer will they persist despite the exhausting conditions in which they work? Will they resist the temptation to leave the public hospital for a private clinic in Malawi, or to migrate out of the country altogether? In addition to limiting the supply of new health workers, Malawi’s limited resources make it difficult to provide current workers with adequate support and supervision. In Chapters 3 and 4, I described how healthcare professionals struggle to provide quality care and find it especially difficult to adapt to changing guidelines and to the needs of special patient populations, such as children. These challenges are magnified by limited training, a lack of supervision, and scarce support by specialists. Faced with these challenges, even experienced nurses like Grace struggled to adhere to the complex guidelines defining “­ exposed ­infants” and to perform the endless, complicated pill counts required for pediatric patients. Some of the strategies implemented to deal with health workforce shortages in Malawi and elsewhere, although necessary and timely, have had unintended and undesirable consequences. For example, relying on volunteers and unpaid community health workers, as discussed in Chapter 3, broadens the human resource base and is palatable to the international donor community—but it may promote unjust labor practices. As described in Chapter 3, community volunteers like the ones who worked with David are as poor as their clients, but are nonetheless asked to provide their services for free, and many of the health surveillance assistants (HSAs) introduced in Chapter 5 are underpaid health workers who lack job security. The pervasive use of the term volunteer, as well as disregard for the political-economic context in which volunteers operate, disguises their vulnerability in an environment severely lacking in employment and other advancement opportunities. Even leaving aside the question of ethics, it is unlikely that strategies to augment the workforce by exploiting desperate and vulnerable people will be sustainable over the long term (Closser and Jooma 2013; Maes 2012). Therefore, solutions to the health workforce shortage must acknowledge the wellbeing of staff as well as patients. Shortages in the workforce, limited supervision and support, and exploitative staffing policies have a cumulative effect on the stress felt by healthcare providers. Chapter 4’s focus on the district clinic revealed the magnitude of the challenge faced by healthcare professionals seeking to provide quality care in a trying environment, one characterized by an ever-growing number of patients

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and an ever-constricting amount of clinical interaction time. The feeling this severe stress causes in providers, characterized by John the clinical officer as “being pressurized,” takes its toll. The price paid by providers is not only harmful to themselves, but also to patients, when quality of care is compromised, and to the trust between providers and patients that is so desperately needed to provide good patient care. Thus, it is essential that we develop approaches to increase the number of staff qualified to provide ART and provide these health ­workers with appropriate supervision and support. In terms of investments and rewards, high-quality training for medical staff is the gift that keeps giving—it is an investment in healthcare and a way to provide reliable jobs for professionally trained workers.

The Road Not Built: The Infrastructure Challenge To consider the role of infrastructure in the ART rollout, one must take a broad view of what the term actually entails. Although roads, hospital buildings, laboratories, and power grids are obvious elements, so are food and social safety nets. Consider Agnes, the 31-year-old woman from Chapter 3 who ignored her positive diagnosis until it was almost too late: Although she clearly suffered from food insecurity, Agnes’s ART was not coupled with food. The ART clinic initially provided Agnes with food supplements (Plumpy’nut), but withdrew this support when her health improved—a blow that certainly jeopardized her chances of a full recovery. Food insecurity is a recognized barrier to HIV care and adherence (Munthali 2002; Young et al. 2014), and it is a real concern in Malawi past and present (Mandala 2005; Vaughan 1987). As such, it constitutes part of the infrastructure needed to provide effective HIV care. The same goes for welfare support and social safety nets, both of which have long been insufficient in Malawi due to years of coping with extreme poverty and a devastating AIDS epidemic. The lack of a strong welfare system means that much of the burden of care for the sick falls on families. However, these families, which for many years represented AIDS patients’ sole safety nets, are the same families struggling with poverty due to the illness of their loved ones, as well as the risk of being socially marginalized because of their association with a disease that is still highly stigmatized. Social safety nets and welfare support are often the first victims of poverty and ill health, since they are hard to build and sustain. Yet, without them, no fundamental change in the health and welfare of the population will occur. The more obvious infrastructure challenges that limit HIV-positive patients’ ART access must be addressed as well, of course. As described in Chapter 5, nonexistent roads, the absence of transportation options, and the lack of proper buildings to house services severely curtail the ability of rural Malawians to obtain treatment. For example, the ART clinic in which I was embedded is located in the center of a small district town and is thus considered rural by ART clinic standards; even so, it was inaccessible to many potential patients living in more

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remote villages in the district. The great distance between Mphatso’s home and the clinic (described in the Introduction), Florence’s unreliable access to a bicycle and a functional roadway (described in Chapter 5), and Chikondi’s worries that he might not make it back home from the clinic before nightfall (discussed in Chapter 5) are only a few examples of the barriers to treatment that patients experienced. For patients like these, arriving at the clinic doors is a substantial physical challenge. Thus, although many patients in Malawi are grappling with the implications of newly available, life-saving treatment regimens, far too many rural patients do not even have the option of beginning ART. Think back to the Introduction, in which we imagined the delivery chain linking a Swiss pharmaceutical company warehouse to a patient in rural Malawi. Many areas of rural Malawi, and indeed of the world, lack almost every link in this chain: roads, airports, warehouses, power grids, refrigeration, buildings, and more. Indeed, drug stock-outs severely hinder access to care—and make patients less likely to risk the long and trying trip to the clinic. Walking 10 miles to a clinic only to find that no drugs are available is a major deterrent to continuity of care. But, ART stock-outs are only one aspect of the breaks in the HIV care delivery chain. Recall Mphatso, who traveled 6 miles over poor roads to the clinic, only to discover that her CD4 count could not be tested that day. The nurse on duty could not even help relieve her headache, instead sending her to the market to buy Panadol. A whole system of infrastructure was missing that day for this rural patient in need of care. In Chapter 5, I described a potential model for reaching out to rural patients despite poor infrastructure: the under-five clinics. A combined preventive and curative service that is administered by auxiliary health professionals, the under-­ five clinics provide services for children under the age of 5 years and their mothers. Under-five clinics have historically served remote populations and provided services both inside and outside of health centers (Ministry of Health 2004), and as such, they have been able to reach out to people unable to access more centralized health facilities. This model’s reliance on community involvement and rural health workers may account for some of its successes: The health professionals operating the clinics often have stronger relationships with local communities than outsiders. Thus, they are able to maintain long-term services. The under-five clinics are not perfect. They do a good job at reaching more central rural areas, but residents from more remote, isolated communities have a difficult time reaching even these services. Thus, although outreach clinics are designed to bring services to patients’ doorsteps, the HSAs running the clinic must contend with the same physical barriers to transportation that stymie their patients. From the HSA’s perspective, cycling for 10 miles with heavy equipment to an outreach clinic only to discover that the clients are not there due to a flooded bridge or road is yet another challenge to the reliability of the services they are trying to provide. In other words, although the under-five clinic model is a promising approach for serving rural clients, it is no substitute for functional infrastructure.

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When we think about providing healthcare services, especially when a complicated disease such as HIV/AIDS is concerned, we often focus on expensive drugs or the importance of a qualified health workforce; we rarely think about investing in basic infrastructure. However, roads, power grids, and buildings are essential for any health service. Moreover, the payout for building and maintaining basic infrastructure goes far beyond the mere provision of ART, benefitting health, education, commerce, and quality of life. Unfortunately, garnering support for such projects is a tough sell in the donor world: Roads and electricity are not only essential, but also unexciting. In addition, big infrastructure projects, with their huge operating budgets, are often an invitation for mismanagement, and many organizations have had bad experiences with corrupt politicians, inefficiency, and projects that were never completed. Not surprisingly, many organizations shy away from such investments. However, although building roads, sanitation systems, and courthouses may not seem as rewarding as treating sick babies, and although these projects are often challenging to complete, they are just as important for the health and welfare of populations as health services. Thus, we must develop strategies to support basic infrastructure in ways amenable to both donors and recipient countries.

Between Rhetoric and Reality: The Policy Challenge Global health policymakers are usually well intentioned, well informed, and committed to basing policies on the best available evidence. However, adapting the policies they carefully craft to local contexts—contexts characterized by a health workforce stretched too thin and a lack of basic infrastructure—often poses difficulties. Consider the policy of expanding ART to children, explored in Chapter 3. Although this policy was timely and important for promoting and protecting the health of HIV-positive children, it failed to provide clinicians with adequate tools to address the unique needs of this specific patient population. Navigating changing guidelines and busy with endless pill counts, healthcare professionals struggled to provide adequate care to these children. In addition, the growing number of teenage patients with their own special needs challenged providers who had little to go on when providing care. Better systems of professional support for providers, as well as guidelines that are more sensitive to conditions on the ground, will go a long way to relieving some of the pressures associated with providing ART in resource-limited settings. Another example of the trouble with implementing well-intentioned policies comes from the changes in guidelines for ART initiation for pregnant women and breastfeeding, also discussed in Chapter 3. During the time of the study, the clinic I worked at was operating based on the WHO’s 2006 guidelines, which emphasized the risk of vertical transmission from mother to child: Exclusive breastfeeding up to 6 months was recommended when baby formula was not accessible, but the WHO avoided recommending national or regional practices and advocated focusing on the individual circumstances of the mother. Moreover,

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new mothers were only treated on the basis of maternal clinical need and local ART availability, and the mother’s treatment was not seen as part of the PMTCT process (WHO 2006). Not only were these guidelines hard to follow with shortstaffed teams and limited training, but the staff at the clinic also knew that new country-specific guidelines were on their way, guidelines that would recommend breastfeeding and prioritize ART to prevent HIV transmission to the child (WHO 2010). This situation was confusing and demoralizing to providers who had to continue for months to focus on every woman’s individual circumstances (a challenge in and of itself in a short clinical interaction) and could not offer preventive ART to all mothers, despite knowing its value as the best practice and that improved guidelines were immanent. Having evidence-based guidelines attuned to the needs and resources of local populations from the beginning might have helped ART providers follow treatment policies more successfully. Another pitfall, not exclusive to ART, is the expectation that a given policy will have an overarching impact on areas that are not directly addressed by it. A common assumption among policymakers is that service expansion will have spillover effects that do not require special attention. For example, it was assumed even among the ART providers I met that training new health professionals to provide ART therapy would suffice to support other, unrelated, health services for which the health workers were not trained. In many ways, policies focusing on the expansion of the health workforce were based on the same assumption: that more workforces would mean a broader basis for health services. Similarly, policymakers often had the unrealistic expectation that planning and coordination would see to themselves. However, as we saw throughout this book, opening an ART clinic does not necessarily mean that the hospital’s lab will be operational, or that there will be power at the hospital to maintain refrigeration for medication—both were missing in the hospital in which I worked. Nor does the construction of a new clinic mean that a road leading to it will appear out of nowhere. In addition, countless broken-down hospitals and impassable roads across Africa are a testament to the wishful thinking that breeds infrastructure without maintenance. Thus, every step toward a health goal should be plotted, to understand not only the need but also what it will take to address it. A treatment program will not be successful without a clinic to house it, electricity to support its laboratory, trained health professionals to provide care, a road that eases transportation, and a setup that allows potential patients to access it. Policymakers who fail to see the whole picture will fail to reach the desired outcomes. Another policy pitfall is the expectation that programs will instantly coordinate. Take, for example, the assumption that launching the ART rollout would not damage the delivery of existing prevention of mother to child transmission (PMTCT) services, and that they would operate independently and effectively. PMTCT programs, which predated the ART rollout, continued to be delivered as part of prenatal services in many health facilities, rather than being provided by ART clinics. This dual structure was expected to maintain itself and serve patients well; however, as seen in this book, it created a break between the care

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provided during and after pregnancy. The inability of the programs to coordinate and transition patients seamlessly had negative effects on continuity of care and treatment outcomes. In their daily efforts to implement global and national policies, health workers often found themselves frustrated by their inability to provide quality care, as described in Chapter 4; however, hope for improved conditions may be at hand. In 2011, the Malawian Ministry of Health replaced the traditional approach of basing PMTCT on clinical staging or CD4 counts with a “test and treat” ­approach (Option B+), in which treatment is based solely on an HIV diagnosis (Kieffer et al. 2014). And, this shift to a “test and treat” regime, in which ART is initiated as soon as a patient is diagnosed, regardless of CD4 count, has not been unique to pregnant women—it is now the official goal of the WHO (2015b) for all patients. “Test and treat” policies will improve access to ART by removing the barriers created by a lack of laboratory testing and monitoring capabilities; soon, patients like Mphatso will never have to return home, empty-handed, ­because of an inability to get their CD4 count. Of course, this new treatment strategy is only as good as its implementation, and we have yet to gauge its long-term effect on loss to follow-up, outside of a few well-resourced demonstration sites. Furthermore, HIV treatment will still be limited by non-ARV drug stock-outs, inadequate information management, and difficulties in integrating new training into existing platforms (WHO 2014b). However, even if the “test and treat” approach is limited by scarce ­resources and weak healthcare systems, this represents an important change in global health policy. This is the first time in the history of HIV/AIDS that treatment guidelines do not separate rich health systems from poor, but draw on the newest ­evidence to benefit patients everywhere. In that sense, the new recommendations are true to their call to “treat all.” Initiating treatment as soon as a patient is ­d iagnosed HIV positive, regardless of CD4 count, may require a leap of faith— that the drugs will materialize, that the staff to deliver them will be available— but reflecting on the lessons of the 3 by 5 Initiative discussed in Chapter 2, we already know that leaps of faith are how big things happen; the leaps just have to be as well planned as possible.

Together for Better or Worse: The Trust Challenge The last challenge discussed, trust, is one of the most abstract, but also one of the most crucial in the delivery of ART. It is intertwined with the reliability of the various actors in the ART rollout. For example, trust between patients and providers allows positive clinical interactions that lead to successful treatment. When patients lack this trust and suspect their providers of stealing food intended for their nutritional support, for example, they are unlikely to commit themselves to treatment. Similarly, trust between providers, government officials, and policymakers allows all to proceed under the necessary assumption that support for ART will continue. When the trust between providers and the “system”

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(the government and the donor community) breaks down due to substandard working conditions, low pay, and heavy workloads, providers are less committed to their work. The outcomes of these breaks in provider trust may vary from low motivation to high dropout rates and even migration, all of which have negative implications for patients’ health outcomes. Finally, trust is the bedrock of many of the partnerships described in Chapter 2; the relationships between governments, international agencies, and NGOs are part of the new global health architecture and require commitment on the part of all parties. In Chapter 2, the productive relationship between Anna, the nurse; Dr. Pierre, the Congolese surgeon; and Dr. Jonathan, the American physician, reflected a broader relationship between the Malawian Ministry of Health, the United Nations, and an American academic hospital—and all of these relationships were made possible by trust. Although both personal and institutional relationships are anchored in contracts and strict procedures, they also rely on state institutions and organizational mechanisms that require trust and trustworthiness: not only of local heads of state and ministries of health, but also of healthcare providers and patients. In sum, each link in the delivery chain must be fortified by trust, or the success of the ART rollout will suffer. When a patient in Chapter 4 asked “What will I do when the treatment stops?” the question was directed not only at his nurse, but at the government and the international donor community as well. As discussed, patients’ fear of the stigma associated with HIV, as well as their need to manage relationships in tightly knit communities, is a deterrent to accessing care. The success of the ART rollout relies on patients showing up at clinic doors, and this will only happen when the fear of stigma is outweighed by trust in the benefits of treatment, trust that providers will do their best to minimize unwanted disclosure, and trust that ART will continue to be available long into the future. In other words, patients must believe that treatment can bestow the chronic normalcy that they seek and that has so far eluded them.

Successes in ART Delivery The second question posed earlier in this chapter was how we can understand successful healthcare delivery. One way to answer this question is to go back to the narratives, stories, and ethnography presented in previous chapters to understand what worked in the process of the ART rollout. Although it is hard to classify any of the narratives, practices, or policies presented as stories of absolute success or failure, it is important to recognize degrees of accomplishment and acceptability. Delving deeper into successful practices, I propose to examine the programs in this book in the light of the four principles for effective global health delivery identified by Kim et al. (2013a,b): adapting to local context, constructing a care delivery value chain, leveraging shared delivery infrastructure, and improving health delivery and economic development. The rollout itself exemplifies the first principle: adapting to local context. Though based on the 3 by 5 efforts, it was designed to fit the Malawian historical,

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geographical, and political landscape. Consolidating local political structures and will, as well as collaborators, was the first step in adapting the program to the local context: The ART rollout was built on the existing health system and with the support of leaders in the Malawian healthcare community. In addition, the rollout was implemented with existing health professionals, like Grace the nurse and Jonas the clinical officer (Chapter 3), who received additional training to deliver ART. Although the rollout may not be perfectly adapted to its environment, as illustrated by the lapses in delivery highlighted throughout the book, its architects clearly recognized the unique environment in which it would be operating. One example of this forethought is Malawi’s investment in the health workforce, an investment that was immediately recognized as a necessity given the local landscape. One of the most basic decisions in the design of the ART rollout was to leverage the shared delivery infrastructure of the existing health system. As a result, ART services in Malawi are not provided in de facto enclaves of higher-end medical care, in which ART clinics are open to the public, but HIV care is provided completely separately from all other healthcare services (Sullivan 2011). Instead, they are part of the national public health system. This reliance on the existing health system can be problematic, as we saw in Chapters 2–4, since many resources, such as laboratories and the workforce, are already in short supply. However, providing care through the existing health system capitalizes on systems already in place and may help policymakers and practitioners avoid a silo-ed, single-disease perspective, thus avoiding some of the pitfalls of vertical programming. Finally, various aspects of the ART rollout have the potential to contribute to the much-needed process of economic development in the country. Malawi’s HIV care has improved patients’ health and economic productivity, and its investment in a trained workforce has provided gainful employment to thousands of eager workers, increasing the size of the local health workforce (McCoy et al. 2008). Think back not only to all the patients who were able to go back to work, but also to Margaret, the young nurse in Chapter 3 who talked excitedly about the renovated district hospital, with its new facilities and extra staff; the Emergency Human Resource Program has offered new training and employment opportunities to talented people like her around the nation. Margaret is, in many ways, the voice of a new generation of health workers, one that Malawi will have to find a way to retain if its investments in patients and providers are to continue to pay dividends.

How Can We Do Better? This discussion of challenges and successes naturally leads to the question: What can we do better? What can we do to improve ART delivery, both in Malawi and throughout the world? And, how can we better respond to challenges similar to HIV when they emerge? Here, I offer some ideas for ensuring that “the glass

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of water” is delivered to people in need, based on the observations recounted in this book, as well as the health delivery literature.

Harness the Power of Partnerships (between International Organizations, NGOs, and Nation States) The SARS outbreak of 2002 and the AIDS epidemic taught the international health community a painful lesson about global epidemics requiring global collaboration, and recent changes in global health architecture and policy, described in Chapter 2, have the potential to usher in new healthcare strategies that are more sensitive to target areas’ changing needs and contexts. The new global health system architecture is based on collaboration between a complicated mix of actors; nation states and national ministries of health occupy its core and are orbited by various multilateral agencies, NGOs, research institutions, and partnerships. This new system is far more inclusive, relationship-based, and flexible than the past system (Lee 2009). However, the system’s ability to respond to changing circumstances depends on the strength of the actors and the flexibility of the links between them. Thus, any relationship between various actors within the global health system is simultaneously enabling and limiting. Dr. Jonathan’s hospital employer, for example, made it possible for him to assist at the ART clinic, but by limiting the number of visits he could make to it, prevented him from providing as much hands-on support as he would have liked to give; similarly, the guidelines drafted by the Ministry of Health provided the clinic’s team with essential guidance, but also sometimes limited its ability to provide optimal care for patients. The partnerships that emerge in this new system can be powerful forces in the service of health. Anna, Dr. Pierre, and Dr. Jonathan, for example, were part of an institutionalized mechanism established to support the ART rollout in Malawi, one that benefited all parties. In this partnership, Malawian health professionals benefitted from the experience of the American physician, Dr. Jonathan, whereas Dr. Jonathan benefitted from the learning opportunity this collaboration provided as part of his medical residency. The same, of course, goes for the UN-contracted Congolese surgeon Dr. Pierre, who appreciated this opportunity to share his expertise. Although their partnership’s success was very much a product of their efforts, it would have been impossible without strong institutionalized backing. Strong institutionalized backing, as well as shared goals, stand at the heart of productive partnerships; however, as discussed in Chapter 2, the goals and interests of various actors are not always synchronized, and huge differences in power make it easy for some actors to promote their goals at the expense of others. Successful long-term partnerships address the needs of all participants and do not just bully the weak into adopting the goals of the strong. Thus, although partnerships hold great benefits, the global health community should beware of blindly supporting partnerships that prioritize the needs of rich nations and corporations

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over the needs of vulnerable populations. For example, the practice of using experimental drugs or conducting clinical trials in vulnerable populations should be scrutinized, to assure that actions serve the needs of all involved, and not just those who stand to profit from them. Productive partnerships exist all over the world, and once they are identified, they can be reproduced and applied at new sites. For example, the transnational partnership to support pediatric HIV care at the ART clinic that I worked at is a model that could benefit other limited-resource ART clinics, in Malawi and beyond, struggling with a growing pediatric population. Models of care cannot be directly adapted from one context to another (Wools-Kaloustian and Kimaiyo 2006); what worked at the HIV clinic in Malawi may not necessarily work elsewhere. However, there is much to be said for thoughtfully adapting programs and reproducing successful partnerships in a manner sensitive to local contexts. The global ART rollout is, in many ways, a testament to this strategy.

Stop Shaping Programs Based on Resource Scarcity and the Pursuit of Sustainability A program must be realistic about finances to succeed, but I argue that when crafting interventions such as the ART rollout, we should beware of relying too heavily on notions of resource scarcity and sustainability. These themes are prominent in the global health discourse, but many in public health are unaware of the results: an underclass of low-paid and unpaid health workers (Maes 2012). Consider David, the NGO worker in Chapter 3, and his sobering perspective on the practice of using poor volunteers as community workers: “The community volunteers don’t get paid anything, nothing, not even a token of appreciation for anything. I would say [this is] one more thing that I would wish would change.” David recognized what global health policymakers often ­ignore—that the ­volunteers are as poor and vulnerable as their clients, yet they are required to work without pay. Similarly, the HSAs in the under-five ­clinics described in Chapter 5 are underpaid, overworked, and enjoy very little in the way of employment security or advancement opportunities. The stories presented here join a much broader conversation on the role of community health workers in limited-­resource settings (Closser and Jooma 2013; Maes 2012; Maes and ­K alofonos 2013), and collectively, the available evidence suggests that new health programs should carefully consider the implications of unpaid and underpaid work for the health professionals, or paraprofessionals, they engage. The challenges caused by the shortage in the health workforce are not limited to Malawi: Many limited-resource health systems worldwide face the same problem. Rethinking the role of volunteers in health programming and engaging all healthcare providers as formal employees should be part of a broader strategy to strengthen the health workforce and develop avenues for training and retaining health workers. Building mechanisms for task shifting, when appropriate,

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is also key to this effort. Malawi’s sector-wide EHRP, and the development of task-shifting opportunities, which did just these things (McCoy et al. 2008; Palmer 2006; Zachariah et al. 2009), are examples of attempts to find systematic solutions to a national health worker shortage. As was seen in Chapters 3–5, the EHRP has not been a perfect solution, and implementing it has taken much time and effort. Even under the EHRP, HSAs like David (Chapter 5) are overworked, underpaid, and enjoy virtually no job security. However, even with its flaws, the EHRP could serve as a model to other countries considering an ART rollout, as it demonstrates that governments must go beyond simple “Band-Aid solutions” to embrace systematic changes and improvements that will result in true sustainability. As long as the culture of global health keeps glorifying volunteer work as an expression of community responsibility while neglecting to address the political economy of volunteerism in low-income countries or the motives of desperately poor volunteers (discussed in Chapter 3), systematic efforts to strengthen and professionalize the health workforce will always lag behind the use of free labor. In global health, operating in resource-scarce conditions is the norm. Exploiting the new underclass of health providers is only a short-term solution to the health workforce shortage, however, and a morally questionable one at best.

Take the Broad View: Health Requires More Than Just Health Care Again and again in the narratives in this book, patients spoke about how their recovery was compromised by food insecurity and social instability. Agnes in Chapter 2 talked about her reliance on the Plumpy’nut she received from the ART clinic and Chikondi shared his concern about the need to buy food at the hospital in Chapter 5. Both patients raised an issue that stands at the heart of the ART rollout, but is hardly discussed: Without stable access to food, ART will fail to save lives. On the same note, HIV treatment unaccompanied by other accessible health services has less chance of improving overall health outcomes. Programs that address non-strictly HIV-related needs will better serve their clients. For example, programs such as the Academic Model for Prevention and Treatment of HIV/AIDS (AMPATH) in Kenya are already integrating food security and social welfare programs into their HIV care, and positive patient and community outcomes have been documented, including improved patient health and also household food security (Mamlin et al. 2009). Patients registered for AMPATH’s HIV services are evaluated to see whether they could benefit from various welfare services, including food security measures, the opportunity to participate in microenterprise, and agricultural training. Incidentally, ­A MPATH, a collaboration between Moi University in Kenya and Indiana University in the USA, is also an example of a productive partnership. The program has already undergone several phases of scale-up, in which the circle of beneficiaries, the range of services, and the logistical infrastructure were expanded.

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This collaborative model that goes far beyond strictly clinical services for HIV care could be adapted successfully to other countries, given the right attention to local circumstances and needs.

Prepare for a Better Future: Electronic Medical Records Given the WHO’s recent recommendation to treat all HIV-positive individuals, the number of patients in Malawi and other settings will continue to grow, and with it the volume of medical records. In Chapter 4, we witnessed paper medical records teetering on shelves, covering desks, bursting from file cabinets, and crowding back rooms—the sheer volume of paper represents a managerial nightmare, and this problem of paperwork must be tamed. One strategy that has proved beneficial in developing countries is electronic medical record (EMR) systems (Blaya et al. 2010; Mamalin and Biondich 2005; Williams and Boren 2008; Wools-Kaloustian and Kimaiyo 2006).1 In projects such as AMPATH and the Partners in Health (PIH) clinics, EMRs have allowed clinics to develop better surveillance systems to prevent loss to follow-up and have helped clinicians provide better care by presenting them with all available treatment options and by warning them against errors. In addition, EMRs can connect clinics to pharmacies and laboratories and facilitate surveillance of stocks and needs. Establishing EMRs will require resources, both human and financial, but NGOs and other nonprofits are already designing low-cost, resource-appropriate systems to rescue health workers from drowning in paperwork.

Making It Happen Of course, all of these suggestions require funding, lots of it. If it were not for funding, many of the strategies discussed would have already been implemented. I argue, however, that the costs of inefficiently treating patients with HIV are insufficiently appreciated. We must begin to think about cost effectiveness in terms of delivery value chains (Kim et al. 2013b), one of the four principles of ­effective global health delivery, rather than in terms of isolated interventions. In this approach, we estimate the cost of a chain of connected interventions needed to achieve positive health outcomes for a condition; we then consider not only the cost effectiveness of that bundle, but also its contribution to broader health outcomes, the value of that bundle to the patient, and the cost of inaction. Such a scheme acknowledges patients’ needs as a whole and treats care delivery as an interconnected system, rather than an inflexible matrix of independent interventions. From this perspective, preventing HIV, diagnosing HIV, and the various interventions required for effective treatment (from drug provision to drug stocking) are all part of the same system of care. These more comprehensive models of care provide the framework for successful programming in resource-poor settings. From a technical perspective, diagonal approaches (Frenk 2010; Ooms et al. 2008) that take a broad view of health

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provide the best service integration in environments characterized by limited resources and in populations suffering from multiple vulnerabilities, including extreme poverty. Diagonal programs use explicit intervention priorities, such as the health workforce, health financing, or infrastructure, to improve health systems and achieve disease-specific results (Ooms et al. 2008). For example, AMPATH’s expansion of its food security program helps small farmers (many of them ART patients) join the program’s agricultural support network, and EMRs allow the program to ensure the drug stocks necessary to decentralize treatment centers. These improvements were planned into the DNA of AMPATH—they were not expected to happen “on their own.” Past experiences with the expansion of HIV/AIDS and food security programs (Reddi et al. 2012) demonstrate that expanding healthcare services in resource-limited settings can, and should, be an opportunity to contribute to improvements in various fields, from education and infrastructure to governance. By assessing the needs of the whole patient, considering delivery value chains, carefully planning, and continually assessing progress, we should be able to improve HIV outcomes while simultaneously addressing other important societal problems.

Looking at Healthcare Delivery through Ethnographic Eyes Many of these observations would not be possible without the ethnographic study on which this book is based. Although there are many ways to find answers to some of the burning questions of healthcare delivery, questions about individual motives and experiences are usually hard to answer using traditional public health tools, such as data from surveys and randomized controlled trials. However, participant observation and in-depth interviews can teach us what it is like to be a patient at a rural HIV clinic, from concerns about long walks to the clinic and being exposed as HIV positive to the strategies used to navigate confidential treatment in a small community. Similarly, ethnographic research can teach us what goes on in the hearts and minds of ART providers, as they struggle with broken systems, professional frustrations, and their sense of duty and fulfillment. I argue that anthropology is uniquely situated to inquire about the agendas, intentions, and personal stakes of everyone involved in ART provision. Moreover, the discipline’s interest in both broad global contexts and narrow local ones allows us to move from the global arena to healthcare at the national, district, and village levels. In this book, ethnography demonstrates the strong ties that bind policy decisions made in Geneva and New York to the lives of people thousands of miles away in Malawi. It also shows how ideas move and adapt to various contexts. Finally, it highlights the importance of personal relationships even in processes that initially seem neutral and clinical, and the preeminence of trust in a process that might, at first glance, seem to be based on the flow of money and medications alone. Most importantly, anthropology’s focus on people—their experiences, thoughts, and personal histories—in contexts as narrow as their immediate family and as wide as the global community, reminds us over and

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over again that no man or woman is an island. Much like a productive healthcare delivery chain, we are all connected.

Broader Implications So, how are these lessons applicable outside of the setting of Malawi from the years 2004–2009? First, there is the obvious fact that the number of patients around the world eligible for HIV care is going to skyrocket in the coming years. As mentioned above, while this book was being written, the WHO recommended for the first time that all patients with HIV be treated. This is a tremendous achievement for the global health community. However, healthcare delivery systems in many low-income countries are already strained to the breaking point by attempting to treat the much narrower swathe of patients eligible for ART under the older recommendations. Uganda, for example, ran out of its 2015 drug supply a full 3 months before the end of the year, requiring an advance supply from the Global Fund (Honan 2015). Clearly, we need to figure out how to make ART delivery more efficient. In addition, the lessons we learn from the rollout of HIV treatment in ­Malawi, and worldwide, will be applicable to many other diseases in resource-poor settings. Where deficiencies in staff, stuff, and systems (Farmer 2014), impede the fight against one infection, another can easily take its place. The 2014–2015 West African Ebola outbreak, for example, signified more than a localized infectious disease spinning out of control: It represented a failure of health systems. This outbreak was not an isolated occurrence, but a result of neoliberal economic policies that focused on the free market as the driver of growth and innovations. A focus on explaining outbreaks in developing countries in terms of exotic customs and irrational native traditions often overshadows the role of sociopolitical and economic factors (Hooker et al. 2014; Jones 2011). All of the countries that struggled with the Ebola outbreak have long been saddled with failing health systems. In these nations, some key medical innovations, as well as investment in public health infrastructure, were deemed financially unworthy, sowing the seeds for this epidemic (Hooker et al. 2014). For example, Liberia, one of the hardest-hit countries, had only one physician per 100,000 people (WHO 2014a) before the outbreak. For comparison, the USA has a ratio of 250 physicians per 100,000 people, and Norway has a ratio of 370 physicians per 100,000 people (WHO 2011). Improving healthcare systems is the only way to prevent the next major epidemic and end the suffering of millions of people. As discussed throughout this book, bringing interventions to the people who need them, in a system that can support them, will require international commitment, appropriate funding, a better understanding of people’s needs and how to meet them, and winning strategies for improving staff, stuff, and systems. The last decades have witnessed unprecedented scientific advances and a tremendous financial investment in global health. Many of the people appearing in the pages of this book are alive due to these changes. They are a reminder of the large gains that we have already made,

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but also a reminder that we can still do much better when it comes to protecting the residents of low-income countries from preventable and treatable infections. Finally, I’d like to propose that the lessons emerging from the ART rollout in Malawi, a small, poor, sub-Saharan African country, are valuable not only in the context of other low-income countries, but increasingly in the context of the Global North. Traditionally, we apply lessons from the Global North to the Global South, but we should consider what lessons can be exported in reverse. Although the circumstances in many countries in the Global South vary dramatically from those in the Global North, some similarities do exist and are important to acknowledge; the failure to draw more valuable lessons from the Global South may result in part from a sort of arrogance on the part of the Global North, which may imagine it has little to learn. Since the recession of 2007, austerity programs have been gaining popularity in countries such as Greece, the UK, and the USA. It behooves policymakers in these countries to think carefully about the toll that lack of investment in health infrastructure and resources takes on healthcare delivery. To learn about the effects of such disinvestment, it might be helpful to investigate the state of healthcare in countries such as Malawi, which have long underfunded healthcare, often due more to a lack of resources than bad decision making. Limited privatized services, non-functioning public services, growing health disparities, and a total inability to quickly respond to emerging infectious diseases characterize these crumbling systems, which have been starved of resources for decades. It would be a mistake to disqualify what we know about Malawi’s past when considering Greece’s future. Recent evidence from Europe and the USA is already pointing to the unbearable human costs that austerity measures have on the health of individuals and societies facing financial downturns. Examples from the USA, the UK, and Greece show that austerity measures have devastating effects on public health and do not necessarily contribute to economic recovery (Stuckler and Basu 2013). Furthermore, other examples from parts of the USA and Iceland show that increased investments in health and other safety net services can shield societies from negative health outcomes during financial recessions, while at the same time contributing to recovery (Stuckler and Basu 2013). Of course, people living in developing countries that have undergone austerity measures and structural adjustment programs already know these lessons. Most of them have not had the fortune of the Icelandic and American citizens whose governments decided to buck the conventional wisdom of international financial institutions and reject austerity as an automatic response to the most recent financial crisis. And yet, although austerity has failed repeatedly and is based more on ideology than evidence (Stuckler and Basu 2013), it is the strategy that prevails in most ­resource-poor areas of the world. There is no denying that economic recessions are bound to impact health systems, as they affect spending on all public goods, and the difficult decisions necessitated by reduced government funding require creative solutions. To this

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end, models designed for resource-poor settings may be helpful in thinking about solutions in more affluent parts of the world as well. For example, conditional cash transfers are common in developed countries: Almost every welfare benefit program, including programs that support health, relies on income tests. In this context, preliminary data from sub-Saharan Africa about the impact of unconditional cash transfers might be worth considering. In Malawi, for example, unconditional cash transfers have had a positive impact on HIV prevention, as have interventions not directly related to health, such as those focused on school attendance and educational opportunities (Baird et al. 2012). The scarce data we have so far from high-income countries indicate that this approach could have similar benefits in the Global North. Data from the Canadian Guaranteed Annual Income (MINCOME) field experiment, although limited in scope, point to reduced hospitalization rates (mostly for mental health problems and accidents) and improved population health (Forget 2011). In 2015, the government of ­Finland announced a similar basic income experiment, and results will be forthcoming. Thus, based on the data we possess about the benefits of unconditional cash transfers, which are being experimented with in many low-income nations and attracting increasing interest in high-income nations, I suggest challenging ourselves to use lessons from the Global South to think more creatively about health during times of financial crisis, and taking a step back from austerity as a default reaction. Similar to recessions, shortages in the health workforce are global phenomena (Crisp and Chen 2014). The USA alone expects a shortage of 91,500 doctors (45,400 primary care physicians and 46,100 specialists) to result from the expansion of health services mandated by the Affordable Care Act (Kirch et al. 2012). Just as in Malawi, workforce shortages and access to healthcare are especially acute in rural areas of wealthy Northern countries; challenges with treatment adherence are not unique to the developing world either. Models of care focusing on nurse-managed services are already being explored in the USA to mitigate shortages in primary care physicians (Auerbach et al. 2013). Does the idea of incorporating more non-physicians into the healthcare system sounds familiar? It might be because the Malawian versions of non-physician clinicians (i.e., clinical officers) and the strategy of shifting clinical tasks from physicians to nurses were introduced in various chapters of this book. In addition, employing more community health workers and using task shifting to a greater degree are two strategies that have proven essential to the rollout in Malawi and have already been adopted into American healthcare models by NGOs operating around the country. For example, PIH, an NGO based in Boston that operates a network of health organizations in countries such as Haiti, Rwanda, Malawi, and Peru, has exported its model of patient accompaniment by community health workers (accompagnateurs)2 to the work of PACT/USA, an American NGO supporting high-risk HIV patients in the Boston area (Behforouz et al. 2004). PACT/USA teams community health workers with patients who have suffered treatment failures, often due to poverty, drug use, and social marginalization. Modeled on

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the directly observed therapy for tuberculosis (DOT-TB) program,3 community health workers support patients in daily activities such as grocery shopping, as well as medical activities, releasing other clinicians from such tasks. So far, the program has improved both adherence to care and health status (Behforouz et al. 2004). Thus, strategies from the Global South to deal with healthcare workforce shortages are already being implemented in the Global North, and high-income countries will no doubt continue to learn much in this area from lower-income nations. It would be a mistake to assume that models effective in one area of the world are automatically transferrable to other contexts. That said, the developed world stands to benefit from the knowledge and expertise of countries such as Malawi, which have spent years coping with poverty, ill health, and limited resources. Experience shows that a lesson learned in one place has the potential to benefit patients far beyond its area of origin. The path of learning should not run only from north to south.

Conclusion (The Gist) Malawi’s rollout program is not perfect. As seen in these pages, it still struggles with effectiveness, equity, and efficiency. However, it is an unprecedented effort by a low-income country to address its citizens’ health needs. Millions of people are alive because of the rollout, including many of the people who appear in the pages of this book. To end the AIDS epidemic in Malawi and elsewhere, the international community will have to make a commitment equal in size to that of the affected nations—this commitment can’t end at a designated date, and it can’t be limited only to HIV services. The need to improve staff, stuff and systems is staggering. Failing to see the HIV outbreak as an opportunity to strengthen health systems and prevent future suffering puts us all at risk of more than a health systems failure—it puts us at risk of a failure of humanity. The ART rollout in sub-Saharan Africa offers a unique opportunity to study how healthcare delivery succeeds and fails. The lessons we learn will pay dividends for improving HIV care and ending an epidemic that has devastated entire countries for far too long. However, probing the transformation of HIV policy to practice, especially by listening to patients, providers, and the other people at the center of one of the 21st century’s biggest health crises, will also provide knowledge valuable in improving healthcare delivery more generally, so that we can combat other important diseases—both those that currently threaten us and those that are bound to emerge in the future.

Notes 1 An important aspect of EMR development in resource-limited settings is the ability to function in environments with intermittent electricity, no Internet access, and users with limited computer literacy skills. In fact, strong EMR systems actually strengthen computer literacy skills.

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2 For more on the social value of accompagnateurs in both Haiti and Boston, see Behforouz et al. (2004). 3 Directly observed short-course chemotherapy has been used in tuberculosis control worldwide with much success. Based on supervised adherence and standardized protocols, the DOT program has simplified TB care and enhanced patient adherence (Behforouz et al. 2004).

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WHO. 2006. Guidelines on Co-Trimoxazol Prophylaxis for HIV-Related Infections among Children, Adolescents and Adults in Resource-Limited Settings: Recommendations for a Public Health Approach. World Health Organization. ———. 2010. Guidelines on HIV and Infant Feeding: Principles and Recommendations for Infant Feeding in the Cintext of HIV and a Summary of Evidence. World Health Organization. ———. 2011. Global Health Observatory Data Repository. ———. 2014a. Ebola situation in Liberia: Non-conventional interventions needed. ­Situation assessment, 8 September 2014. ———. 2014b. Implementation of Option B+ for Prevention of Mother-To-Child Transmission of HIV: The Malawi Experience. World Health Organization. ———. 2015a. Global Health Observatory (GHO) data. World Health Organization. ———. 2015b. Guideline on when to start antiretroviral therapy and on pre-exposure prophylaxis for HIV. World Health Organization. Williams, F., and S. A. Boren. 2008. The role of the electronic medical record (EMR) in care delivery development in developing countries: A systematic review. Informatics in Primary Care 16(2):139–145. Wools-Kaloustian, K., and S. Kimaiyo. 2006. Extending HIV care in resource-limited settings. Current HIV/AIDS Reports 3(4):182–186. Young, S., A. Wheeler, S. McCoy, and S. Weiser. 2014. A review of the role of food insecurity in adherence to care and treatment Among adult and pediatric populations living with HIV and AIDS. AIDS and Behavior 18(5):505–515. Zachariah, R., N. Ford, M. Philips, S. Lynch, M. Massaquoi, V. Janssens, and A. D. Harries. 2009. Task shifting in HIV/AIDS: Opportunities, challenges and proposed actions for sub-Saharan Africa. Transactions of The Royal Society of Tropical Medicine and Hygiene 103(6):549–558.

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Index

Academic Model for Prevention and Treatment of HIV/AIDS (AMPATH) 30–31, 126, 127 ACT UP 22–23 Africa. See Malawi; sub-Saharan Africa AIDS. See also HIV: activism 23–24, 34–37, 73, 101; becoming a global health priority 21–25; change in priority status 34–35; not prioritized as a disease at first 22 AIDS Coalition to Unleash Power. See ACT UP AIDS exceptionality 86 AIDS normalization 86 AIDS orphans 36 AIDS-related stigma 2, 10, 11, 36–37, 75–82, 122 AIDS treatment. See also antiretroviral therapy: advocating for in developing countries 22–23; grants and goals for 23–24 Alma-Ata Declaration of Primary Health Care 29, 52; critique of 29–30, 52–56 American President’s Emergency Plan for AIDS Relief (PEPFAR) 23, 24, 37 AMPATH. See Academic Model for Prevention and Treatment of HIV/AIDS (AMPATH) anthropological theory 10–12, 128 anti-Apartheid movement 22–23 antiretroviral therapy. See also AIDS treatment: for children 60–65; deficits in delivery of 27–31; events leading to therapy in Malawi 25–27; improving

123–8; ineligibility for 3; for pregnant and nursing mothers 57–59, 119; responsibility for initiation and support shifted to non-physicians 47–51, 125–6, 131; rollout in Malawi 4–6, 12–14, 18–39, 114; successes in 122–3; in village settings 97–109; volunteers delivering healthcare 52–56, 67–68, 116, 125 Appadurai, A. 35 ART. See antiretroviral therapy austerity measures in healthcare 130–1 babies and simplified protocols for treating HIV positive 57–58 basic income 131 Bill and Melinda Gates Foundation 23, 33 Blantyre 6, 98 Bono 24 Brandt, A. M. 24 breastfeeding and possible HIV transmission 58–59, 119 buzzwords 37 3 by 5 Initiative 23–24, 38 Canadian Guaranteed Annual Income (MINCOME) 131 Castro, A. 80 CD4 count as treatment indicator 1, 2, 3, 68, 115, 121 Centers for Disease Control and Prevention (CDC) 13, 21 children: calculating correct medication dosage 63–64; late diagnosis of HIV in 62–63; treatment of HIV positive 18–19

138 Index

chronic normalcy 10–11, 81 clinical staging guidelines 83–84, 119–21 clinic and barriers to visiting 1–3, 62–63, 77–78, 98–100, 117–19 Clinton, Bill 24 community health workers 9, 12, 26, 47, 52–53, 66, 108–9, 116, 125, 131–2 compensation for volunteers 67–68 conditional cash transfers 131 confidentiality of patients 11, 78, 83, 100, 128 continuous uncertainty: of healthcare provider 85–86; of HIV patient 10, 81 data collection in health initiatives 88–89 delivery value chains 127 developing countries advocating for AIDS treatment 22–23 development assistance for health (DAH) 24 diagonal approach to healthcare delivery 30–31 district hospital 44–46 donor community 25, 56, 91–93, 114, 116, 122 Double-Orphans 36–37 Ebola epidemic 13–14, 129 electronic medical records (EMR) 93, 127 emergency, hierarchies of 21–25 Emergency Human Resource Program (EHRP) 26, 46, 126 Essential Health Package 25, 46 ethnography 10–12, 115, 122, 128–9 ethnography of healthcare delivery 10–12, 115, 128–9 evidence-based programming in health 88–89, 120 exposed infants 57–58 Farmer, Paul 13, 80 Feachem, Richard 23 fear of disclosing HIV status 3, 11, 75, 76–81 feeding protocols 57–60, 119–20 food insecurity of patients 117, 126 Frenk, Julio 30, 88–89 GAVI 32 Global Fund to Fight AIDS, TB, and Malaria (GFATM) 23, 24, 26, 32 global health: AIDS and 24; funding for 24; hospital based programs 19; setting priorities 31–35 global health language 36, 37

global health system: new flexible organization of 32–33; public-private partnerships in 32–33 global policy: antiretroviral therapy rollout in Malawi and 4–6, 12–14, 18–39, 114, 119–21; translated into HIV care 112–32 Gonzalez, C. L. 29, 30 guidelines for testing and treatment 83–84, 119–21 Guinea’s ebola epidemic 13–14, 129 healthcare delivery: case study 12–14; deficits in 27–31; diagonal programs in 127–8; ethnography of 10–12, 115, 128–9; human resources challenge in 115–17; importance of 8–10; integrating non-HIV needs 126–7; relationships in 72–93; translating global policy into HIV care 112–32; trust and 121–2; universal problems in 13–14; in village settings 97–109 healthcare workers: community 12; gap in training and working 49–51; increasing 26; recordkeeping by 86–93, 127; relationship with patients at clinic 82–85 healthcare workers shortage in Malawi 4, 44–68, 115–17, 125–6; providing formal structures of support 66; strategies to address 46–60; strategy dealing with pediatric HIV 60–65; strategy to have simplified protocols 56–60, 66–67; strategy to have volunteers deliver healthcare 52–56, 67–68, 116, 125; strategy to shift tasks to non-physicians 47–51, 66, 67, 103, 108, 125–6, 131 health delivery system: diagonal approach to 30–31; divesting resources for other needs 28; failures of local 13–14; horizontal approach to 29–31; vertical approach to 29–30, 119 health surveillance assistants. See HSAs hierarchies of emergency 18–39 HIV. See also AIDS: access to treatment in Africa 22–23; care in village settings 97–109; in children 60–65; diagonal approach for healthcare delivery 30–31; fear of disclosing status 3, 11, 75, 76–81; late diagnosis in children 62–63; obstacles in getting treatment for 1–3; in teenagers 64–65; transmission from mother to child through breastfeeding 58–59, 119

Index  139

HIV care delivery: challenges in resourcelimited settings 10–14, 28–31, 44–68, 84, 87, 115–22; infrastructure challenges in 117–19; using under-five model 108–9, 118 HIV clinics 45–46; lack of trust in 75–76; patient experiences in 72–93; tension with other hospital wards 29 HIV positive children and treatment 18–19 HIV positive newborns and babies and simplified protocols for treating 57–58 HIV Vaccines and Microbicides Resource Tracking Working Group 8 H1N1 influenza outbreak of 2009, 21–22 horizontal health programs and tension with vertical health programs 29–30 horizontal programming 13, 29–30, 38 hospital, district 44–46 HSAs 47, 53, 103–4, 106–7, 116, 118, 125 2004 Human Development Report 4 human resources challenge in healthcare delivery 115–17 IMF 23 Indiana University 30, 126 infants: exposed to HIV 57–58; feeding and possible HIV transmission to 58–59 infrastructures 9, 14, 22, 27, 30–34, 38, 49, 56–57, 60, 82, 84, 92–93, 114–15, 117–19 Interim WHO Clinical Staging of HIV/AIDS and HIV/AIDS Case Definitions for Surveillance: African Region 84 Jerven, Morten 89 Kaposi’s sarcoma 28, 85 Kenya 30, 126 Kim, Jim Y. 13 landscapes of care 11–12, 33 Lazarus effect 76 Lee, Jong-wook 23 Liberia 129 Lilongwe 6, 98 Liu, Joanne 13 Maes, K. 53 Malawi: antiretroviral rollout in 4–6, 12–14, 18–39, 114; deficits in health delivery system in 4–6, 27–31; events leading to antiretroviral therapy in 25–27; history of under-five clinics in 104–5; improving universal access to

HIV treatment 6–8; increasing number of health workforce in 26; number of HIV positive individuals 113; shortage of healthcare workers 5, 25, 44–68, 115–17, 125–6; strategies to address shortage of healthcare works 46–60; universal access to HIV treatment 4–6 Malawian Ministry of Health 18–20, 25, 26, 28, 31, 33, 46, 88 malnutrition 8, 14, 28, 35, 58–59, 104–6 master-cards 72, 75, 77, 86–91 maternity ward in a district hospital 44–46 measles 14 Médecins sans Frontières 13, 33 mediator between patients and healthcare providers 72–73 mission hospitals 2, 74–75, 98 Moi University 30 Morley, David 104 mothers, treating HIV-positive 57–58, 119 Murray, C. 88 National AIDS Commission (NAC) 5, 18 nation states partnering with NGOs and organizations 124–5 newborns and simplified protocols for treating HIV positive 57–58 NGOs 33; initiating self-help groups 101–2; partnering with nation states and organizations 124–5; use of volunteers 53 Nigeria and polio eradication 30 nongovernmental organizations. See NGOs non-physicians performing tasks 47–51, 66, 67, 103, 108, 125–6, 131 nutritional support 34–35, 81, 104–5, 108–9 Option B+ 121 organizational pluralism 32 Orphans and Vulnerable Children 36–38 OVCs. See Orphans and Vulnerable Children PACT/USA 131–2 Pakistan and polio eradication 30 participant observation 128 partnerships between organizations, NGOs, and nation states 124–5 Partners in Health 33, 127 patients: adherence to taking medicine 90–91; experiences in an antiretroviral clinic 72–93; food insecurity of 117, 126; lack of trust in HIV clinics 75–76;

140 Index

maintaining their confidentiality 11, 78, 83, 100, 128; success or failure factors of 11; trusting the healthcare providers 121–2; trying to transition to chronic normalcy 10–11, 81 pediatric HIV 18–19, 60–65 permanent transition: of healthcare provider 85–86; of HIV patient 10, 81 pill counting 90–91, 119 Piot, Peter 23 plumpy’nut 27, 28, 117, 126 pneumonia 1–3, 28, 97 polio eradication 30 poverty 10, 13, 35, 36, 89, 112, 114, 117, 128; rural 4–6, 28, 45, 48, 55, 98–100, 117–18; urban 4, 98 pressure for healthcare providers 82–85, 117 Prevention of Mother-To-Child Transmission (PMTCT) program 57, 120–1 Public Health Emergency of International Concern 21 public hospital 44–46 public-private partnerships in world health 32–33 recordkeeping of healthcare providers 86–93, 127 relationships in healthcare delivery 72–93 religion and HIV 24, 74–76, 79 religious leaders 94 resource-limited settings and challenges in healthcare delivery 10–14, 28–31, 44–68, 84, 87, 115–22 resource scarcity 125–6 right to health 22, 34 rural HIV care 97–109; under-five clinic 102–9 SARS outbreak of 2002, 32 self-help groups 101–2 simplified protocols in delivering healthcare 56–60, 66–67 Single-Orphans 36–37 Slum Tours 36 socialization of scarcity 67 South Africa and access to HIV treatment 22 stock-outs 3, 28, 113, 118, 121 Stop TB 32 structural adjustment programs (SAP) 76, 130

sub-Saharan Africa: antiretroviral therapy rollout in 114; HIV treatment in 22–23, 35; prevalence of AIDS 22 support: groups for HIV 73; from local village communities 100–2; systems for healthcare workers 66 sustainability of healthcare delivery systems 124–5 Swidler, A. 53 system of adherence production 11 Szlezák, N. A. 32 TAC 22–23 task shifting 47–51, 66, 67, 103, 108, 125–6, 131 teenagers and challenges of having HIV 64–65 test and treat policies 13, 68, 115, 121 therapeutic citizenship 11 traditional healers 75 traditional medicine 20, 74, 82 treatment: adherence 11; availability and its acceptance 80 Treatment Action Campaign. See TAC treatment initiation parameters 56–57, 84 treatment partner 77–78 treatment side effects 3, 9, 83, 87, 91 trust in the global health system 76, 81–82, 86, 88–89, 91–92, 121–2, 128 tuberculosis 24, 98, 132 Uganda 129 UK Department for International Development (DFID) 26 UN 32 unconditional cash transfers 131 under-five clinic 102–9; applied to HIV care 108–9, 118; history in Malawi 104–5; strengths and weaknesses of 105–8 UNDP Human Development Report 4, 99 UNICEF 32 United Nations. See UN United Nations Development Program (UNDP) 4 U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) 23, 24, 37 vaccinations 21, 29, 31, 47, 103–6 Vaccine Alliance 32 vertical programming 13–14, 26, 29–31, 123 village coordinators 103, 107 village settings and healthcare delivery 97–109

Index  141

voluntary consulting and testing (VCT) 26, 81, 98, 114 volunteer health workers 52–56, 67–68, 116, 125; ethical problems of 55–56; motivations of 54–55; under-five clinic 103, 107

welfare support 117 WHO 21, 22, 23, 47, 74, 84, 113; role in intergovernmental coordination 32, 120 women’s self-help groups 101 World Bank 13, 23, 32, 37 World Health Organization. See WHO