The Global Politics of AIDS 9781626370166

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The Global Politics of AIDS

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The Global Politics of AIDS edited by

Paul G. Harris Patricia D. Siplon

b o u l d e r l o n d o n

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Published in the United States of America in 2007 by Lynne Rienner Publishers, Inc. 1800 30th Street, Boulder, Colorado 80301 www.rienner.com and in the United Kingdom by Lynne Rienner Publishers, Inc. 3 Henrietta Street, Covent Garden, London WC2E 8LU © 2007 by Lynne Rienner Publishers, Inc. All rights reserved Library of Congress Cataloging-in-Publication Data The global politics of AIDS / edited by Paul G. Harris and Patricia D. Siplon. p. cm. Includes bibliographical references. ISBN-13: 978-1-58826-467-1 (hardcover : alk. paper) 1. AIDS (Disease)—Political aspects. I. Harris, Paul G. II. Siplon, Patricia D. RA643.8.G567 2006 362.196’9792—dc22 2006027913 British Cataloguing in Publication Data A Cataloguing in Publication record for this book is available from the British Library. Printed and bound in the United States of America ∞

The paper used in this publication meets the requirements of the American National Standard for Permanence of Paper for Printed Library Materials Z39.48-1992. 5

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Contents

Preface

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1 Global Politics and HIV/AIDS: Local, National, and International Perspectives Paul G. Harris 2 Power and the Politics of HIV/AIDS Patricia D. Siplon

Part 1

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Domestic Politics and Policy

3 Defying Globalization: Effective Self-Reliance in Brazil André de Mello e Souza

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4 The Government-NGO Disconnect: AIDS Policy in Ghana Bernard Haven and Amy S. Patterson

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5 Overcoming the Contradictions: Women, Autonomy, and AIDS in Tanzania Patricia D. Siplon and Kristin M. Novotny

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6 The Political Economy of HIV/AIDS in India Marika Vicziany

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7 Law Enforcement, Public Health, and HIV/AIDS in China Susanne Y.P. Choi and Roman David

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CONTENTS

8 Guilty as Charged: Accountability and the Politics of AIDS in France Michael J. Bosia 9 Shifting Priorities in US AIDS Policy Benjamin Heim Shepard

Part 2

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International Politics

10 The UN and the Fight Against HIV/AIDS Amy S. Patterson

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11 Trading Life and Death: AIDS and the Global Economy Asia Russell

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12 Rhetoric and Reality: HIV/AIDS as a Human Rights Issue Joanne Csete

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13 International Relations and the Global Ethics of HIV/AIDS Paul G. Harris and Patricia D. Siplon

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List of Acronyms Selected Bibliography The Contributors Index About the Book

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Preface

This book is a small effort to contribute to the world’s understanding of the global public health crises arising from the spread of the human immunodeficiency virus (HIV) and the resulting pandemic of acquired immunodeficiency syndrome (AIDS). Rarely is it possible to compose a book that requires no justification at all owing to the profundity of its subject matter. If there is such a subject, the one to which this book is devoted may be it. Already, some 25 million people have died from AIDS—an average of one million people per year since the disease was first identified. The HIV/AIDS pandemic is a public health crisis of the greatest magnitude, albeit one that is taking place in a sort of slow motion that has resulted in halting and, all too often, inadequate policy responses. Like so many other observers, we are humbled by the scale of suffering brought on by the spread of HIV/AIDS around the world. The stories of the people affected by the pandemic, and the efforts of those who seek to help them and to bring this scourge to an end, are frequently painful reminders that we have an obligation to do all that we can to fully understand this problem. Here, a small group of concerned scholars and practitioners seek to further that understanding. Ours is an attempt to give power to people living with HIV/AIDS, others affected by it, and those who wish to help to reduce and one day end the pandemic. We hope that the book will lead to positive results that build on and assist the efforts of enlightened individuals, organizations, and governments. In a tiny effort to increase the benefits that the book might bring to those who suffer from HIV/AIDS, all royalties will be used to help people living with AIDS. *

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The editors and contributors are grateful for very helpful comments and suggestions from anonymous referees. The editors wish to thank the contributors for joining this project and for persisting with it through peer review and revivii

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PREFACE

sions. Our hearty thanks also go to Marilyn Grobschmidt of Lynne Rienner Publishers, who (along with her colleagues) saw the importance of this project and ushered it to final publication. The editors gratefully acknowledge funding from the International Joint-Research Program of the Centre for Asian Pacific Studies and the Centre for Public Policy Studies at Lingnan University, the Faculty Development Fund of Saint Michael’s College, Rotary International University Teacher’s Program, and the Fulbright Scholar Africa Regional Research Program. We also benefited from the able assistance of Kwok Kin Chan in preparing the index. Most of all, the editors would like to thank Kwok Kin Chan and Todd M. Watkins for their support and patience during the long period spent working on this project. —Paul G. Harris and Patricia D. Siplon

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1 Global Politics and HIV/AIDS: Local, National, and International Perspectives Paul G. Harris

We’re now marking the 25th anniversary of the detection of AIDS, and it has been a sad chapter in the history of humanity. —Nicholas D. Kristof1

A sad chapter indeed. Despite tens of millions of deaths from AIDS and widespread suffering by countless other people indirectly affected by the disease, the global response to this monumental pandemic has been slow and halting. The lack of power among most of those directly affected by AIDS has been a signature factor exacerbating it, but in some places the weakness of those with HIV/AIDS has started to shift in their favor, resulting in new policies that are finally starting to slow the pace of new infections and increase the number receiving effective treatments. This book explores this nascent change by examining the politics and power of HIV/AIDS at multiple levels of human activity, from individual sexual relations to corporate boardrooms to the centers of international power in Washington, Brussels, United Nations headquarters, and beyond. At present, about 40 million people worldwide are living with the human immunodeficiency virus (HIV), the virus that causes acquired immunodeficiency syndrome (AIDS).2 More than 25 million people, predominantly in the poorest parts of the world, have died from AIDS-related diseases since the pandemic was first recognized in the early 1980s, most of them in the developing world, particularly the hard-hit countries of sub-Saharan Africa.3 More than three million people, including half a million children, perished as a consequence of AIDS in 2005 alone.4 About five million people (including threequarters of a million children) were infected with HIV in 2005,5 with millions 1

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of people expected to be infected in the future as the virus increasingly spreads in regions where prevalence was relatively low until recently (e.g., the former Soviet states and south, southeast, and east Asian countries). Consequently, AIDS will almost certainly kill tens of millions more people in coming decades. Antiretroviral (ARV) therapy, the only effective means of treating HIV/AIDS (by preventing HIV from leading to full AIDS or reversing the infections that arise from it), is reaching barely more than one of every ten people who need it.6 This is a public health crisis of monumental proportions; it is a personal tragedy for its victims, their families, and caregivers; and it is a monumental challenge for people, businesses, and governments almost everywhere but especially in the most vulnerable communities and societies across the globe. The need to understand the HIV/AIDS pandemic is utterly manifest. Even though there is much that is remarkable about this crisis, two glaring attributes of the HIV/AIDS pandemic are clear—one frustratingly obvious, the other quite apparent when we examine the issue. The first is the depressingly slow response of governments (as compared to the much more rapid response, within their capabilities, of many affected groups of people), arising from what the Joint United Nations Program on HIV/AIDS (UNAIDS) has bluntly called “social discrimination and political indifference.”7 The second is the related degree to which power relationships, and power disparities and imbalances in particular, have defined this problem. In the first case, for too long governments turned a blind eye to HIV/AIDS, and in most cases continue to do too little, either because they lack the capability to act or the willingness to do so. In the case of power relationships, it is now clear that, as a general rule, those most adversely affected by HIV/AIDS are those individuals, groups, communities, and nations that lack power. Indeed, where there have been successes in resisting the spread of HIV and treating people with AIDS, it is very often those with power who have rallied support, either through self-help or by doggedly breaking down the barriers that still, in too many places, are preventing the implementation of solutions. This book is a group effort to look at these two (and many related) attributes of the HIV/AIDS pandemic. We ask, what explains the slow response of governments? What explains the reactions of other actors? Which groups have been most affected and why? How have power relationships and disparities in power in particular led to and perpetuated this problem, and what is their role in ongoing and potential efforts to relieve and perhaps one day end the associated human suffering? We attempt to answer these and similar questions by adopting a global perspective on the politics and power of HIV/AIDS. We are interested in the pandemic’s causes, impacts, and solutions at all levels of human activity, from individual people to global institutions and forces. HIV/AIDS predominantly exists because of behavior almost universal to people everywhere, notably sex and reproduction. It has been exacerbated by other vectors,

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such as intravenous drug use, but most of all it has been spread—indirectly, but only barely so—by poverty and despair, discrimination, and the subservient position in which some groups, countless women, and even entire countries find themselves. The characteristics of the pandemic are not consistent globally, however; they are very much shaped by particular cultural, social, and political forces. For this reason, governmental and nongovernmental actors that want to help those infected—and affected—by HIV/AIDS must first address its local causes and consequences. At the same time, both the spread and containment of HIV/AIDS are international phenomena. Like all viruses, HIV does not respect national borders. The problem is also international because the world’s rich countries have resources that can be, and slowly are being, mobilized to address the problems of HIV/AIDS that are disproportionately borne by poor countries and peoples. Bearing these considerations in mind, this book brings under one cover a collection of sometimes provocative case studies of the local, national, and international politics of the HIV/AIDS pandemic. We seek to understand how particular affected communities and countries have dealt with HIV/AIDS; to compare these experiences in search of lessons that are (and are not) transferable to other groups, countries, and regions; and to examine how diplomacy and international relations affect, and are affected by, this extremely pressing global problem. It is important to note that the chapters highlight many key domestic and transnational actors, institutions, and forces (e.g., civil society actors, people and organizations affected by AIDS, state officials, transnational corporations, and other stakeholders) influencing responses to the pandemic. The book’s overall approach to this issue is one that combines scholarship and analysis with sensitivity to, and awareness of, the suffering of those afflicted and the frustration felt by those seeking to bring about meaningful change that will mitigate this suffering and prevent its spread. Toward this end, contributors to the book include academics, practitioners, and activists who hope and expect that it will be a valuable resource for governments, stakeholders, nongovernmental organizations (NGOs), activists, and students interested in public health and HIV/AIDS in particular. The chapters that follow can also be informative for concerned global citizens seeking to understand the world’s inadequate responses to the most deadly pandemic ever to face humankind—and the possible ways to provide more help to those suffering from it and to ultimately bring it to an end. The book is divided into two parts that follow the introductory chapters. Each chapter examines the HIV/AIDS policy process, including key actors, institutions, and forces, and many of the power relationships among them. As a prelude to the case studies in Parts 1 and 2 of the book, in Chapter 2 Patricia D. Siplon highlights the absolutely central, crosscutting, and often determinative role that is played by power, power relationships, and power disparities and imbalances in the spread of HIV and the resulting scourge of

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AIDS. As Siplon reminds us, at its most fundamental level, politics is about who gets what, when, and how; it is about power. Like politics generally, HIV and AIDS are also fundamentally about power. Siplon’s chapter shows how, at all of the levels that we analyze—individual, group, community, state, or international—power relationships can strongly influence and even dictate the spread of HIV/AIDS. Power, or the lack of it, often dictates who engages voluntarily or, as often happens, involuntarily in risky behaviors, and when. It is important to note that lack of power also contributes to the compromised overall health status of individuals within many risk groups, particularly the very poor, which makes infection upon exposure more likely. Groups within countries compete for power to shape the rules of society that structure human relationships and in turn the pandemic, and they fight for control of scarce national resources that impact the course of HIV and AIDS. Power also matters at the international level, where strong states often dictate to weaker ones and where powerful states at least have sway over how the human, technological, and financial resources of international organizations are or, quite often, are not deployed to address the causes and consequences of HIV/AIDS. As Siplon puts it, “in all of these cases, it is power—whether the ability to make one’s own choices or the ability to make other actors behave in accordance with one’s wishes—that determines what will and will not happen and whether HIV/AIDS will take hold and spread human suffering.” All of the case studies that follow, to varying degrees, are demonstrations of the power relationships highlighted by Siplon. Often the stories are sad demonstrations of what we might call the “failures of politics” to allocate resources and remedies as we might normally desire. Sometimes, however, especially in depictions of more recent events, there are success stories, examples of things changing for the better. It is to understanding both these failures and these successes, and how we might see more of the latter, that the following chapters turn.

Part 1: Domestic Politics and Policy The chapters in Part 1 describe and analyze HIV/AIDS in domestic and comparative perspective. Here we are interested in highlighting and understanding experiences by people and groups within specific countries, in the process garnering lessons that may be transferable to other local and national circumstances or, alternatively, understanding experiences that clearly are not transferable to other countries (so that governments and other actors can avoid wasting time on them). Although HIV can infect anyone, certain populations have disproportionately borne the virus and its impacts. Some of these groups have been affected by certain risky behaviors common to the group, such as

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illicit injection-drug users. Others have suffered the effects that HIV/AIDS has had on those closest to them, such as widows and orphans. Some proactive groups have been empowered by organizing and engaging in activism, whereas others have been held back, hampered by cultural and economic obstacles, overpowering discrimination, or a shortfall in information and skills. To better understand the global pandemic, we look at some of these groups in order to understand the internal power dynamics that affect the spread of and the suffering caused by HIV/AIDS. Many of the dynamics working at the local level also affect interactions at the national and international levels (as the case studies in Part 2 of the book show). We examine cases from both developed and developing countries, including those considered to have successfully addressed HIV/AIDS and others regarded as having undertaken inadequate or even counterproductive efforts. By looking carefully at country cases and comparing their experiences, we highlight valuable lessons that can help those formulating HIV/AIDS-related public health policies in other countries not specifically analyzed in this book. Our case studies of domestic politics and policy begin in Chapter 3 with André de Mello e Souza’s analysis of Brazil’s successful effort to “defy” the forces of globalization through HIV/AIDS policies premised on self-reliance. He examines Brazil’s National HIV/AIDS Program and its antiretroviral treatment program. This ARV program, which was among the first to give free AIDS therapies to all patients, has been successful but also highly controversial. It was controversial because it defied conventional wisdom regarding public health policy and international agreements intended to protect the patents of multinational pharmaceutical companies. De Mello e Souza shows that Brazil’s ARV policy grew out of changes in the country’s political system in the 1980s, notably a new conception of health care as a constitutionally protected right that was at odds with prevailing neoliberal approaches to public policy. He argues that the ARV program resulted from the emergence of AIDS NGOs as Brazil democratized and as government officials subsequently took the demands of these organizations seriously. The program’s success relied on Brazilian manufacture of generic ARV medicines in order to make the cost of treatment affordable for the government. This capability to produce generic medications also allowed Brazil to credibly negotiate with major multinational pharmaceutical companies, which gave it substantial discounts on patented drugs, although the companies—with the backing of the US government— strongly protested. By mobilizing all of its diplomatic resources and by having the backing of transnational advocacy networks, Brazil was able to resist those pressures. In so doing it also “defied established health policy beliefs upheld by authoritative and politically influential international organizations, funding agencies, and health research centers, according to which antiretroviral treatment [was considered to be] unfeasible in developing countries.” Chapter 3 is

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thus a case study of how developing countries can, through determination at the national level, defy international political and economic forces to effectively respond to HIV/AIDS. Brazil has been hit hard by HIV/AIDS, to be sure, as have other countries in Latin America. Their suffering is surpassed, however, by that experienced in sub-Saharan Africa, the epicenter of the pandemic. We devote two chapters to this important region. In Chapter 4, Bernard Haven and Amy S. Patterson explore the relationship—which they refer to as the “disconnect”—between the public health objectives of government and those of NGOs in Ghana: Haven and Patterson analyze how civil society organizations, specifically local HIV/AIDS-specific NGOs, have faced difficulties in influencing public health policy. Their case study highlights several major obstacles confronting HIV/AIDS organizations in Ghana. They have limited resources, they find it difficult to coordinate their activities with one another, and they are excluded from most national institutions that design and implement HIV/AIDS policy. More generally, Ghana’s social and political environments are not amenable to the work of AIDS-related organizations, and their work lacks widespread support from the public. The case study in Chapter 4 shows that NGOs that are institutionalized into the policy process can have greater impact, albeit at the expense of their own public health objectives. The HIV/AIDS-specific NGOs have assets—their passion and direct experience with the pandemic— but they also have problems inherent in their membership. When the people with AIDS who make up the NGOs see activists and members die, it saps their morale and institutional memory and also poses profound practical problems for their operations. Overall, Haven and Patterson’s case study demonstrates, sadly, that stigma, poverty, and marginalization can severely limit the power of AIDS organizations to influence public health policy and that efforts to address HIV/AIDS must simultaneously reduce these weaknesses if those efforts are to be successful. Our second chapter dedicated to sub-Saharan Africa is by Patricia D. Siplon and Kristin M. Novotny. In Chapter 5, Siplon and Novotny look at the goals of and solutions to an HIV/AIDS epidemic sought by a “triply oppressed group”: widows of AIDS victims who themselves have HIV/AIDS. The authors interviewed women in Tanzania suffering simultaneously from severe resource deprivation, discrimination, and HIV/AIDS. One key concept underlying Siplon and Novotny’s case study is that of autonomy, especially personal autonomy, which can potentially enable women in Tanzania to effectively confront the difficulties and challenges they have been forced to face as a consequence of HIV/AIDS. The chapter traces the conceptual development of autonomy in Western (particularly feminist) political thought, showing how a lack of it, combined with gender discrimination, has increased the already disproportionate burden that AIDS has created for women and girls. The disease has not only infected the women studied in this chapter, but it has made them widows as

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well. A bitter brew of personal tragedy, anger, and a total lack of resources to meet their own and their children’s material needs has motivated these women to collectively mobilize in the hope that doing so might enable them to survive the epidemic in their communities. Siplon and Novotny look at how these Tanzanian women have attempted to overcome tremendous adversity to increase their personal autonomy, in the process challenging Western assumptions about autonomy and offering African perspectives as an alternative. In their words, these women “strive to realize control over their lives in a way that invokes Western conceptions of autonomy but without (1) the resources that are necessary to realize these goals and (2) stereotypical Western assumptions that autonomy is the product of an isolated self.” They note that these women, despite the multiple obstacles in their paths, have remarkable clarity in their visions of their own autonomy goals and now are collectively seeking empowerment, in the form of resources and opportunities, in an attempt to realize these visions. With a population of those living with HIV/AIDS exceeding five million,8 India has the unfortunate distinction of joining South Africa as the two countries worst affected by the pandemic, although so far India’s per capita exposure is much lower than in a number of African countries. Millions of Indians have already died from AIDS, and many millions more will do so at an increasing rate unless urgent action is taken very soon. In Chapter 6, Marika Vicziany looks at one aspect of India’s pandemic: HIV and AIDS resulting from heterosexual intercourse, the predominant means of transmission there (although there are other important vectors in India, notably through the sharing of contaminated drug-injection needles). Vicziany argues that HIV has entered India’s general population due to the universal practice—and even duty—that all Indians enter marriages, meaning that men who have sex with men will usually marry and “become family men.” These same men, with a new sexual revolution in India, will seek out sex (usually unprotected) that is not available in their premarital social groups, thereby further spreading the virus. Much as has happened in other countries, the government’s attitude toward HIV/AIDS has been characterized by indifference followed by a “coercive response that victimizes sexual minorities who continue to be falsely regarded as the root cause for India’s epidemic.” It was only in late 2003 that the government’s AIDS body, the National AIDS Control Organization (NACO), recognized this problem. But HIV infection rates continue to rise, showing, according to Vicziany, that the Indian government’s policies have “failed dramatically.” The official response to the pandemic in India has been simplistic, focusing on high-risk groups (e.g., homosexuals) rather than stressing high-risk behavior and conditions that foster transmission. The chapter shows that, unless public health policy in India is refocused, the prospect for controlling HIV/AIDS there “looks grim.” Vicziany’s case study also suggests that NACO, despite being “generously funded” by the World Bank, has been grossly incompetent, wasting money and failing to effectively create and utilize an infrastructure for addressing HIV/

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AIDS. This has been manifested by the continued difficulty most people face in acquiring condoms and the woeful lack of education about HIV/AIDS, especially in rural areas. Indeed, NGOs fighting HIV/AIDS at the grassroots are still subject to attacks by India’s police forces, which see even the possession of condoms as evidence of illicit prostitution. These policies are largely a result of social stigma and bureaucratic sclerosis, although it is possible that India’s current, more secular, government could eventually make a difference, especially if there is additional funding, antidiscrimination legislation, educational reform, and improvements in the healthcare infrastructure. Turning from southern to eastern Asia, in Chapter 7 Susanne Y.P. Choi and Roman David present a case study of law, public health, and AIDS prevention in China. Choi and David note how HIV/AIDS has become—very slowly at first, but much more rapidly recently—a major public health issue within China. As they point out, according to a joint survey conducted by the Chinese government, the World Health Organization, and UNAIDS, China officially had about 650,000 people infected with HIV and about 75,000 people living with AIDS. The actual number of people infected with HIV by January 2006 in China was widely assumed to be much higher, however, with the UN predicting that it could reach 10 million by the end of this decade.9 Despite the Chinese government’s very slow response to the pandemic, recently the government and the country’s top political leaders have publicly acknowledged the problem, and they have shown a greater commitment to combat it, as evidenced by official issuance of “China’s Action Plan for Reducing and Preventing the Spread of HIV/AIDS (2001–2005).” Ethnographic research, as described in Chapter 7, suggests, however, that the central government’s efforts to address the HIV/AIDS pandemic may be seriously undermined by the strategies of law enforcement officials at the local level. Using data collected from in-depth interviews and focus group sessions with intravenous drug users in Sichuan Province, Choi and David show how tactics employed by the police may prevent high-risk populations from practicing harm reduction, such as minimizing the exchange of contaminated needles and increasing their use of condoms during sexual intercourse. Mirroring some of the lessons learned from the case study of India in Chapter 6, Choi and David highlight the importance of finding a balance between law enforcement and public health needs. Because those populations most vulnerable to HIV/AIDS are often lacking in power, socially marginalized, and subject to serious discrimination, Choi and David argue that this task must be accomplished through collaboration of many government agencies at the central, provincial, and local levels, accompanied by assistance from international donors and the active participation of NGOs (heretofore frowned upon in China). Moving on from our case studies of HIV/AIDS policy in the economically developing world, Part 1 concludes with two chapters looking at HIV/AIDS

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policy in France and the United States. France is the subject of Michael J. Bosia’s case study in Chapter 8. The major themes in Bosia’s chapter include activism of NGOs, namely the group Act Up Paris (which was inspired by the AIDS Coalition to Unleash Power [ACT UP] in the United States); the politics of identity; and the notion of accountability for those who exacerbated the epidemic in France. Bosia argues that a battle over who is responsible for AIDS there is what defines activism and shapes the identities of those people affected by it. Going further than the aggressive rhetoric of its counterparts in the United States (see Chapter 9), Act Up Paris lodged criminal complaints against government officials, accusing them of allowing HIV to spread in France, particularly through infected blood products used by hemophiliacs. Some government ministers were in fact tried in special courts, although they were condemned less by those courts than by public opinion. What is more, AIDS NGOs in France worked to overcome labels that associated HIV/AIDS with homosexuality, forging a common identity with all affected groups and using narratives “that reinvented many established values associated with French citizenship,” thereby showing that people with HIV/AIDS are “members of the national community.” According to Bosia, French activists were able to unite identities based on race, class, gender, and sexuality, thereby resisting the political marginalization previously experienced by affected groups. Bosia describes this strategy as having been successful, with “a large and growing segment of the public and the establishment accept[ing] the transformation of homosexual and AIDS activists into legitimate citizens through concerns framed as common interests with a strong commitment to solidarity,” in the process making the politics of identity surrounding HIV/AIDS compatible with a “popular [French] republicanism”—even to the point at which a gay socialist was able to win the race for mayor of Paris. From a power perspective, this case also demonstrates how activists may be able to use coalition building and linking of issues to commonly held values to increase the power of affected groups. Ultimately, French activists were able to transform HIV/AIDS from a question of government policy alone to one of national values and government responsibility as well, resulting in more accountability for those responsible for exacerbating the pandemic in France, and more effective policies for combating it. In Chapter 9, Benjamin Heim Shepard describes and assesses the history of HIV/AIDS policy in the United States, which he portrays as transitioning through three identifiable stages: “gay plague,” “national priority,” and “social control.” Shepard’s chapter describes a history of HIV/AIDS advocacy in the United States, particularly (1) community organization and mobilization during the 1980s, (2) breakthroughs in treatment and legislation achieved in the 1990s, and (3) the “imposition of social control” that followed “in which people with HIV/AIDS and community-based service providers struggle for autonomy while attempting to preserve the remains of a US social

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safety net and welfare state.” He points out that owing to breakthroughs in the 1990s, such as the availability of highly active ARV therapy, the story of AIDS in the United States changed from one of tolerance to one of intolerance. Shepard argues that HIV/AIDS policy in the United States can be understood only by bearing in mind social and economic macrotrends that affect the allocation of public funds and other resources. Despite conservative politics in the United States, AIDS activists have been surprisingly successful in garnering public resources for their cause even when other interest groups have suffered cuts.10 HIV/AIDS policy has been subject to broader policy trends, however (e.g., privatization of welfare, income inequality, unaffordable health care, and discrimination), and it is “still enacted with a moralizing approach aimed at social control.” This suggests that HIV/AIDS policy continues to be shaped, at least to a substantial degree, by prejudicial attitudes, not yet being part of mainstream health policy—except insofar as it is likely to suffer from future budget cuts as Washington attempts to trim spending on social welfare and public health.

Part 2: International Politics What happens within domestic communities is greatly affected by the policies and actions of other countries, their governments, and the international community. Sometimes suffering at the local or national level has been exacerbated by international politics and the global trade regime; at other times assistance has come from the international community. With this in mind, Part 2 of the book moves beyond individual countries to explore relationships among governments, international organizations, and other transnational actors. It builds on the preceding chapters by exploring the politics of AIDS at the international level. The case studies in Part 2 examine the ways that governments, communities, international institutions, and other actors are interacting across national boundaries to address the problems created by HIV/AIDS. They include studies of specific policy conflicts, such as struggles over the uses of scarce international aid resources and the fight for affordable treatment in developing countries. Part 2 also looks at HIV/AIDS in the context of international trade, national security, and human rights and describes how global institutions are attempting to meet new challenges posed by the AIDS pandemic. HIV threatens those infected with it, and AIDS threatens the very survival of those who suffer from it, particularly in the many places where effective ARV therapies remain out of most people’s reach. The pandemic is also a threat to the security of the societies and even the nation-states in which its sufferers reside. That is, suffering from HIV/AIDS threatens more than those with HIV in their bloodstreams; the impacts of the disease also reverberate throughout

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domestic communities, threatening livelihoods and broader human well-being. HIV/AIDS also threatens the national security of states as it erodes economies and exacerbates existing social and political problems that can lead to domestic conflict, possibly contributing to interstate rivalries. It is not surprising, then, that HIV/AIDS has been a major concern of the United Nations. In Chapter 10, Amy S. Patterson describes the response to the HIV/AIDS pandemic by the UN and affiliated international organizations and their attempts to build an international regime around a global commitment to health. Actions by the UN during the early 1980s, when the world started to recognize the pandemic, were relatively limited; initiatives and actions came mostly from governments and domestic actors, notably groups such as ACT UP in the United States. By the mid-1980s, however, the World Health Organization had formed the Global Program on AIDS, which helped develop standardized diagnoses and promoted international deliberations on HIV/AIDS that emphasized “empowerment and participation.” During this period HIV/AIDS was portrayed as a medical issue requiring technical solutions and involvement of organizations representing people living with HIV/AIDS. By the mid-1990s it became apparent that more cooperation among the UN and other international organizations was needed to effectively address the pandemic. Consequently, in 1996 UNAIDS was created. It went beyond the Global Program’s advocacy (by both governments and NGOs) of national and international responses to the pandemic by prioritizing the building of political commitment to combating the disease. This was manifested in the 2001 UN General Assembly Special Session on HIV/AIDS. It is important to note that, unlike the Global Program, UNAIDS coordinates the HIV/AIDSrelated programs of UN agencies. Its mission “reflects a broader framework . . . in which the disease is linked to concerns over human rights, underdevelopment, and gender empowerment.” The UN also created the Global Fund to Fight AIDS, Tuberculosis, and Malaria, which garners major financial support for national action on HIV/AIDS (along with malaria and tuberculosis). Patterson concludes that a “realization that health and politics are interrelated is crucial not only for policymaking on HIV/AIDS but also for the development of a larger commitment to public health,” with participation of political leaders being crucial, and she points out that there is a need for an international forum where political leaders can work together. The UN is serving as that forum, in the process also helping to coordinate action among governmental and nongovernmental actors. Like so much else in a globalized world, the HIV/AIDS pandemic is intimately connected to and caught up in the global economy. Asia Russell examines these connections in Chapter 11. She points out that one of the factors conspiring to prevent people from getting access to treatment for HIV and AIDS is the prohibitively high cost of medicines. As she portrays it, this has led to one of the greatest preventable health tragedies of modern times, one

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that disproportionately affects people in the poorest parts of the world. The advent of effective ARV treatments in the developed world happened to roughly coincide with the creation in 1995 of the World Trade Organization (WTO). The prices charged for ARV treatment at the time (on the order of $15,000 per year) were unaffordable for the vast majority of people with HIV/AIDS. Russell argues that the inability of these people to get access to ARV treatments resulted from a campaign by wealthy countries (e.g., the United States, Japan, and members of the European Union) to use the WTO to integrate the world economy, in the process imposing patent-protection regimes on poor countries that might otherwise find ways to get access to the medications (see the response of Brazil depicted in Chapter 3). Russell describes the intellectual property protections that were negotiated in the Agreement on Trade-Related Aspects of Intellectual Property Rights that accompanied the creation of the WTO and their impact on HIV/AIDS treatment in the developing world. Her chapter focuses largely on the efforts of the United States and its “allies in the pharmaceutical industry” to exploit bilateral relations and the WTO, thereby preventing or limiting the use of much less expensive generic ARV medicines manufactured in developing countries. Russell takes an important look at the efforts of activists and other civil society actors to highlight the unfairness of the system promoted by the United States and the drug makers, and the recent successful efforts of those activists to place the right to health, and ARVs in particular, on a par with the commercial interests of pharmaceutical producers. Indeed, by mid-2005 the US government was touting its approval of generic ARV combination therapies for use in US-funded programs overseas. All of the chapters in this book highlight moral questions related to HIV/AIDS. In our final two chapters the pandemic is analyzed in the context of normative standards of human rights, cosmopolitan ethics, and international obligations between rich and poor countries. In Chapter 12, Joanne Csete looks at some of the human rights implications of the HIV/AIDS pandemic. One of her arguments is that violations of human rights exacerbate the pandemic, and in turn those people with HIV/AIDS suffer from violations of their human rights, creating a vicious and unjust cycle. As Csete notes, “any disease that started out with the name ‘gay-related immune deficiency’ would be likely to have some human rights challenges built in.” She argues that the history of HIV/AIDS has been substantially shaped by the fact that many of the people most likely to be living with HIV/AIDS, especially in the early years (e.g., sex workers, intravenous drug users, prison inmates, migrant workers, and gay and bisexual men), were politically unpopular and disempowered. This posed a special challenge for those hoping to heighten the political salience of these people’s rights. Although Csete notes that protecting human rights is increasingly recognized by international organizations and many governments as important for fighting HIV/AIDS, human rights considerations and the “stigma

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and discrimination” that underlie HIV/AIDS are nevertheless not adequately considered by policymakers and not sufficiently implemented in public health programs. This is especially true with regard to the ambivalence of many governments (e.g., the United States and Middle Eastern countries) toward protecting the rights of many of those people most vulnerable to HIV/AIDS. Women—women with HIV/AIDS most profoundly—also routinely face discrimination, especially in parts of the world where the pandemic is most severely entrenched (see Chapter 5). Thus, although much lip service is paid to protecting human rights, Csete finds a wide gap between rhetoric and practice. Reinforcing lessons learned in other chapters, she concludes that the pandemic is “unlikely to be turned around until state-sponsored harassment and persecution of persons with AIDS and those at risk are addressed, along with subordination based on gender, repression of information, and discrimination related to HIV/AIDS. . . . As long as people living with, at risk of, and otherwise affected by AIDS are abused and persecuted, this most destructive of epidemics will have the upper hand.” Our final case study looks at HIV/AIDS from the perspective of global ethics. In Chapter 13, Paul G. Harris and Patricia D. Siplon ask what obligations the world’s wealthy countries have to help poor countries and their people to address the HIV/AIDS pandemic, and the extent to which the wealthy countries have fulfilled these obligations. Harris and Siplon highlight some of the ways in which HIV/AIDS presents the world with profound moral challenges. For example, the pandemic is one of the most severe and widespread manifestations of human suffering in history, especially in the poorest countries where the majority of the world’s people live. Despite the extent of this suffering, the global response to HIV/AIDS, notably by the world’s rich countries, which are most capable of taking action, has been severely lacking relative to the scale of the problem. Even though the governments of economically developed countries have acknowledged the problem and started to provide aid to those suffering from it, their actions are far less than they are capable of providing, recent increases in funding and attention (particularly from the United States) notwithstanding. Harris and Siplon argue that this “needs to—and ought to—change.” They provide several ethical justifications (i.e., utilitarian ethics and considerations of responsibility for harm) for demanding that developed countries do more to help poor countries in their efforts to combat HIV/AIDS and to care for those who suffer from it. Harris and Siplon believe that doing so would “dramatically reduce the amount of human suffering caused by AIDS, and it would do so at very little cost to those providing the aid. This alone is enough justification for action.” One important point made in Chapter 13 is that the economically developed countries (some more than others, of course) bear some responsibility for the suffering from HIV/AIDS in the developing world because they ignored the problem and the conditions that foster it for too long. A more direct accusation is that

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at times they actively worked to prevent the worst affected countries from providing treatment for sufferers by keeping ARVs and other medicines unaffordable (see Chapters 3 and 11). According to Harris and Siplon, “this adds to the moral burden of the world’s wealthier countries and peoples.” This is especially the case because in today’s world it is generally assumed that rich countries should provide aid to poor ones when they are in great need (as when aid is provided, often as a matter of routine, during major famines). Harris and Siplon point out that the fact that the world’s poor are in need in this case is undeniable, and provision of aid is possible. Hence, we must conclude that further delay not only runs counter to the interests of all those who suffer from HIV/AIDS, as well as those indirectly affected all over the world, but that it is immoral and contradicts a desirable historical trend toward more care by the world’s wealthy for the world’s suffering poor. The case for denying aid is now very hard to make; the case for doing much more is very strong.

This is not to say that the rich countries have entirely failed to fulfill their obligations. Although their response has been slow, the United States and some other countries have pledged substantial aid and have started to provide it, and some privately funded organizations have teamed with the UN and others to provide more aid for HIV/AIDS prevention and care. What is more, many of the blatant efforts to prevent the spread of affordable (usually generic) ARVs have stopped. Having said that, not only is more aid needed, but conditions on existing aid (e.g., US restrictions on programs that advocate condom use or that fund organizations associated with abortion) diminish its benefits, and obstacles to ARVs remain in the fine print of free-trade agreements. Harris and Siplon thus acknowledge that the willingness to provide aid has increased over time, but they also argue that it has not gone nearly far enough. For reasons of morality (among others), the halting trend toward greater aid from rich to poor in the context of HIV/AIDS ought to be greatly accelerated.

Conclusion Our case studies on local and domestic politics of HIV/AIDS demonstrate how power relationships have been and remain drivers of HIV/AIDS policies in both developing and developed countries. During the early days of recognition of the disease in developed countries, insofar as HIV/AIDS was about homosexuality, the prejudices against gays determined how policy activists mobilized and to what end. In reality, of course, the pandemic is by definition not about gays; it is affecting an increasing number of groups and communi-

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ties, with the most impact and suffering among those people—women, children, the poor, and the world’s many “untouchables”—with the least power in their own national communities. When they have somehow been empowered, whether through their own efforts or with help from domestic and international actors, suffering and the spread of the disease have been lessened. Slowly—very slowly in many countries, including some of those most affected—HIV/AIDS is starting to be seen for what it really is: a scourge on a number of groups in society and upon society itself. If this gradual shift in attitudes continues, more effective policies already practiced in some countries will garner additional support, thereby at least lessening the impact of the disease. Alas, the trend in many places, notably China and especially India, is not very promising, with more people being infected and affected and with human suffering likely to increase on a grand scale unless more action is taken very soon. Our case studies on international dimensions of the HIV/AIDS pandemic show how power relations between and among states, intergovernmental organizations, NGOs, and multinational corporations have material impacts on the scale of the pandemic, affecting whether policies to deal with it are encouraged and implemented and influencing the degree to which those policies are effective. Weak states have sometimes had policies that exacerbated the pandemic (e.g., free-trade patent protections and privatization of health care institutions) imposed upon them. Increasingly they have fought back and asserted their sovereignty, sometimes with beneficial results, as in the case of Brazil. At other times, the very weakness of states has made them reliant on external governmental and nongovernmental actors, which more and more are working with local officials and organizations, with positive outcomes. The case studies show that HIV/AIDS is a profoundly moral issue, bringing into sharp relief the degree to which normative principles are or, too often, are not upheld domestically and internationally. The pandemic is about human security and human rights, suggesting that prerogatives and priorities of governments and businesses do not always comply with the needs of the people they are supposed to benefit. The case studies in Part 2 also point to another conclusion: international ethical norms must be implemented; they are essential to effective practical public health policies and the protection of human, national, and (in the long term, perhaps) even international security. This means that all people and all governments, whether motivated by self-interest or a desire to do good, have the most profound interest in working to stop the spread of HIV/AIDS as soon as possible and to bring comfort to those who already suffer from it. And to be truly effective, these efforts must be animated by the goal of resolving the power inequities—at the individual, societal, and international levels—that have fostered and supported this deadly pandemic since it began.

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Notes I wish to express my heartfelt gratitude to Patricia D. Siplon for her helpful comments on this chapter, her hard work and diligence as coeditor of this book, and especially her efforts as a researcher, teacher, and sometime activist to limit the spread of HIV and to help those living with AIDS. 1. Nicholas D. Kristof, “At 12, a Mother of Two,” New York Times, May 28, 2006, Sec. 4, p. 11. 2. Joint United Nations Program on HIV/AIDS [UNAIDS]/World Health Organization [WHO], AIDS Epidemic Update 2005 (Geneva, Switzerland: UNAIDS, 2005), 1–2. Available at http://www.unaids.org/. 3. UNAIDS, An Exceptional Response to AIDS (Geneva, Switzerland: UNAIDS, n.d.), 1. Available at http://www.unaids. org/ (accessed August 18, 2005). 4. UNAIDS/WHO, AIDS Epidemic Update 2005, 1. 5. Ibid. 6. UNAIDS/WHO, AIDS Epidemic Update 2004 (Geneva, Switzerland: UNAIDS, 2004), 5. Available at http://www.unaids.org/. 7. Ibid., 6. 8. UNAIDS/WHO, AIDS Epidemic Update 2005, 33. 9. Ministry of Health, People’s Republic of China; UNAIDS; and World Health Organization. “2005 Update on the HIV/AIDS Epidemic and Response in China,” January 24, 2006. Available at http://www.unchina.org/unaids/2005-China%20HIV-AIDS %20Estimation-English.pdf. See, for example, “China Can Use Lessons from AntiSARS Battle to Take on AIDS, U.N. Expert Says,” AIDS Weekly (December 1, 2003), 10; Edmund Settle, “AIDS in China: An Annotated Chronology 1985–2003,” China AIDS Survey, November 2003, 101. Available at www.casy.org/chron/AIDSchron_ 111603. pdf. 10. For analysis of HIV/AIDS policy and social activism in the United States, see Patricia D. Siplon, AIDS and the Policy Struggle in the United States (Washington, DC: Georgetown University Press, 2002).

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2 Power and the Politics of HIV/AIDS Patricia D. Siplon

Consider three decisions. In the first, a teenage Tanzanian girl succumbs to demands to become the second wife of a much older man whom she barely knows. She does not want to marry, instead wishing to find a way to return to secondary school. But her father is dead, and her mother has no way to support her. The man that the girl has married is seeking a replacement for his second wife, who has recently died of AIDS—though he does not reveal that to his new bride. The young woman gives birth to two babies consecutively, but both die at three months of age. Only after her husband also dies, and she is chased off his property by his family, does she find out that she also has AIDS. She returns to live with her mother until her death after several years of painful, untreated illness. The second decision is made in France. There the mother of a boy with hemophilia and HIV that he contracted through government-provided HIVcontaminated blood products chooses to join the activist group Act Up Paris.1 There she finds common cause with other AIDS activists—some drawn from the gay community, others looking for ways to protect the rights of immigrants—in targeting the government, which they all believe is responsible for a host of sins of omission and commission leading to their becoming infected with HIV. Together, they are able to use a variety of tactics—from protests to media campaigns—to put pressure on the government and raise the issue of its accountability. Ultimately, high-level members of the French government are even brought to trial—they are acquitted by the legal system but not by the court of public opinion.2 Finally, a third decision is reached by the government of Malawi as to the magnitude of assistance for fighting its HIV/AIDS crisis it should request from a new source of international funding. Burdened with an estimated one million cases of HIV/AIDS—approximately 15 percent of the adult population—the country seeks relief from a new entity, the Global Fund to Fight 17

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AIDS, Tuberculosis, and Malaria (commonly referred to as the Global Fund), which was established as a new funding mechanism at the behest of United Nations Secretary-General Kofi Annan. Malawi, like many of its fellow developing countries, makes its case for funding by submitting a plan created by its Country Coordinating Mechanism (CCM), a collection of domestic stakeholders that are meant to be drawn from government and civil society. Yet the news quickly leaks into the international AIDS community that Malawi’s proposal has been scaled back by its authors at the behest of powerful donor nations and the World Health Organization (WHO), to the obvious detriment of the people and programs most in need of additional funding.3 The trajectory of HIV/AIDS has had an impact on all three of these decisions and the consequent choices that follow, and these decisions in turn have had an impact on HIV/AIDS. The common context of the spreading pandemic of AIDS is apparent. Less apparent is that all of these decisions, and their aftermaths, are consequences of imbalances of power. These actions that lead to or result from HIV/AIDS are not voluntary choices, because the affected individuals lack the power to make alternative choices, as demonstrated by the examples from Tanzania and Malawi. Other cases, such as the decision by the mother in France to join Act Up Paris and the decision of Act Up Paris to target its government, reflect a process of power acquisition, a means of leveraging certain resources, such as information and moral arguments, against an opponent with far greater traditional power resources. And finally, some of the decisions, like the decision of the husband in the first case to pressure a young woman into a marriage that killed her and the decision of powerful governments to pressure the government of Malawi to ratchet downward its own assessment of its citizens’ needs, reflect perhaps our most common conception of power—the ability to force those less powerful to do as the powerful bid. At its most essential level, politics are about power. In this respect AIDS and politics are alike, because AIDS, too, is all too often about power. At every level, power relationships dictate the spread of HIV/AIDS and the ways that individuals, groups, nations, and international organizations cope with its effects. These relationships range from the most fundamental level, where individual transmissions do or do not occur because of power-driven decisions about whether to engage in risky behaviors, to the country level, where various actors compete both for state resources and for the creation of rules distributing power in certain ways, to the international realm, where strong nations often dictate the responses of weak ones as well as dictating the actions of international governing bodies meant to serve all nations. In all of these cases, it is power—whether the ability to make one’s own choices or the ability to make other actors behave in accordance with one’s wishes—that determines what will and will not happen and whether HIV/AIDS will take hold and spread human suffering.

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Dimensions of Power Although everyone would rather have power than be deprived of it, there is a very wide range of thought that varies among and within cultures, as well as academic disciplines, over what, exactly, constitutes power. According to an influential contemporary scholar of international relations, Joseph Nye, “simply put, power is the ability to effect the outcomes you want and, if necessary, to change the behavior of others to make this happen.”4 This definition is quite different from the one that Peter Bachrach and Morton Baratz claimed that American pluralists use to describe power—“participation in decision making”5— which is in turn very different from Srilatha Batliwala’s view of power as “control over material assets, intellectual resources and ideology.”6 Clearly, power means different things to different people. To simplify the task of describing, as well as understanding, the differing visions of power, we can think of it as functioning for different purposes. One major way in which power has been dichotomized along these lines has been to consider the difference between power as a means of controlling the actions of others (power over) and power to control one’s own personal or community destiny and decisions (power to). This distinction is essentially a shorthand way of thinking about external versus personal control. In the first instance, “power over,” we are usually considering an individual’s power as an ability to control the actions or resources of other actors (including but not limited to the state). In order to be able to discern when such control is taking place, C. William Domhoff suggested three indicators: who benefits, who governs, and who wins. Looking specifically at the corporate community within the US political process, he further suggested a theoretical framework of four processes to be examined for signs of the exercise of power: the special interest process, the policy planning process, the candidate-selection process, and the opinion-shaping process.7 Such a multidimensional approach is neither exhaustive nor entirely applicable to other settings of power analysis, since not all nation-states may have the same political processes, and not all power settings are nation-states. But it is suggestive of the need to think about the many ways and spaces in which power is exercised. In the case of the other major function of power listed above (“power to”), we are typically talking about an individual’s ability to control her or his own choices or destiny (or a group or state’s ability to control its destiny). Scholars of this form of power are usually looking at those who do not have power and are thus forced to conform to the will of others. This state of being without power means not only that they cannot exercise power in the sense of controlling the actions of others but also that they are being controlled and thus do not have even self-regarding decisionmaking power. It is this latter condition that is the preoccupation of many scholars and activists dealing with this side of the power dynamic, and thus this conceptualization is closely

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linked to two other concepts: empowerment and autonomy. Srilatha Batliwala defined empowerment as “the process of challenging existing power relations and gaining greater control over the sources of power.”8 But Rekha Datta and Judith Kornberg noted that actually empowerment may be both a process as defined above and an outcome.9 The scope of activities that might constitute empowerment in either the process or outcome sense is wide ranging. It can include finding ways to make one’s own decisions (about, for example, reproductive choices or life plans) or to be included in policymaking groups or the actual decisions of such groups (such as changes in laws regarding property ownership or rights within family structures). Similarly, autonomy has been defined as one of two components that constitute power (the other is capacity) and as “implying the ability to make decisions independently of external forces.”10Autonomy may refer to individuals, as for example when feminists and development scholars speak of increasing the autonomy of impoverished women who have few life choices. In the context that Aili Tripp was describing, her concern was with autonomy at both the societal and state levels. “State co-optation, repression and elimination of independent groups,” she noted, are all signals of a lack of societal autonomy, whereas the presence of interference by “foreign, class, communal or other societal interests” denotes a lack of state autonomy.11 This application of the notion of autonomy to actors operating at different levels suggests a second critical way in which power has been examined: that is, to situate the examination on one of three planes. These are relational (interpersonal power between two people or individuals within small groups), societal (looking at the power dynamics between groups within society or between groups and the state), and global (looking at power relationships between states or states and nonstate actors within the global system). Because of the fractionation that occurs within and between academic disciplines, often different academic fields and subfields have focused on different levels. Thus, the political science subfield of international relations concerns itself with distributions of power at the global level, whether between states (the approach famously employed by the school of thinking known as realism) or between a variety of state and nonstate actors operating in the global system. Meanwhile, sociologists employing theories of elite power and political scientists wrangling over the relative merits of the pluralist approach may differ markedly over who has most power within society, but both sets of scholars train their gaze on the groups within society and their power distributions with respect to each other and to the state itself. Following the adage that “what you see depends upon where you look,” it is not surprising that examinations at different levels have yielded different theoretical insights, although often these insights are applicable to other levels as well. Two of the most important such sets of insights for our purposes are what we may refer to here as the “faces of power” concepts, derived pri-

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marily from studies of power politics conducted at the national level, and the newer body of literature surrounding the concepts of “hard” versus “soft” power derived from research and theorizing focused at the global level. As the following discussion will attempt to demonstrate, both conceptual refinements to the idea of power are of considerable use in helping us to make sense of the ways in which power is intimately involved in the problems and solutions to the global AIDS pandemic. In the early 1960s, Peter Bachrach and Morton Baratz published a pair of articles that famously argued that, by exclusively examining which individuals and groups have influence in controversial decisionmaking processes, both sociologists and political scientists were missing an extraordinarily important exercise of power. That second, hidden “face” could only be seen, they argued, by also considering decisionmaking processes that do not happen. That is, “when the dominant values, the accepted rules of the game, the existing power relations among groups, and the instruments of force, singly or in combination, effectively prevent certain grievances from developing into fullfledged issues which call for decisions, it can be said that a nondecisionmaking-situation exists.”12 And the ability to keep certain issues from ever reaching the point of being decided can reflect just as much, if not more, power than that exercised in defeating an opposing position in a decisionmaking forum. Although the vision of multiple faces of power is concerned with the forms power can take in the decisions (and nondecisions) of the powerful, the conceptualization of hard versus soft power is made by considering how to make the less powerful conform to the will of the powerful. The objective of both hard and soft power is the same: for the powerful to get what they seek by altering the behavior of the less powerful. But the means of achieving these objectives are different. In the more familiar case of hard power, the powerful are able to use tools, such as superior military and economic resources, to coerce the less powerful into compliance. Soft power, conversely, is achieved by “getting others to want what you want.” In doing so, “it coopts people rather than coercing them,” and “it is the ability to entice and attract.”13 One manifestation of soft power has been described by Clawsen, Neustadt, and Weller, who argued that “power is most effective (and least recognized) when it shapes the field of action.”14 This “field of action” is a concept borrowed from Tom Wartenberg, who viewed powerful social agents as being capable of causing others to reorient themselves to the powerful agent. Thus, in the cases that Clawson and his colleagues studied, the power of corporations was not as blatant as “buying votes.” Rather, the mere presence of a corporation in the district forced a member of Congress to orient him- or herself to the interest of that corporation. On a global stage, the hegemonic military, economic, and cultural power of the United States may arguably hold the same “force field” role for other

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nation-states. At this international level, Nye viewed “the universality of a country’s culture and its ability to establish a set of favorable rules and institutions that govern areas of international activity” as key examples of the forms that soft power may take.15 But he was also quick to note that soft power may operate at other levels, giving as examples the cultivation of soft power by popular US-based corporations and nongovernmental groups. This broadening of the applicability of soft power to nonstate actors implies the possibility of an additional application: the use of soft power by weak actors as a means of achieving more parity in situations where they are vulnerable in terms of hard power. When a weaker state is able to convincingly portray to a global audience the moral, ethical, or practical superiority of its policies in defiance of a stronger state, this use of soft power may mean that the weaker state will prevail even in the face of overwhelming military or economic disadvantage.

AIDS and Power as a Multifaceted Relationship Throughout the world, AIDS has worked as a sort of tragic highlighter, rendering visible previously hidden or ignored power inequalities that exist between genders and generations, between stigmatized groups and societies-at-large, between governments and the governed, and between vulnerable states and powerful ones. It is no coincidence that AIDS most frequently occurs among, and most severely affects, the powerless within and among states. AIDS and the devastation it has wrought are the tragic consequences of power inequalities and oppression, though this is not always immediately apparent because of the initial invisibility of many disempowered communities. AIDS, Power, and Individual Vulnerabilities Much analysis has gone into two dimensions of the power inequities that render individuals vulnerable to HIV infection: poverty and human rights abuses. One of the clearest findings of over a decade of research on HIV/AIDS is the correlation between poverty and a positive HIV status.16 Equally compelling is the body of literature, pioneered by the late Jonathan Mann and steadily multiplied over the years by numerous individuals and human rights and advocacy organizations, on the links between the lack of respect for human rights and the raging of epidemics around the world among people, from sex workers to drug users to prisoners to sexual minorities to women denied basic forms of autonomy, who suffer from this lack of respect.17 The link to power in both cases is strong. In the first case, as both economists and political scientists know, money and power are fungible. One can be interchanged for the other, and the person with no money is often, if not

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always, a person with no power. Similarly, the denial of human rights can occur precisely because an individual has no power (and no resources to acquire it), and with this denial a cycle can be perpetuated to keep the oppressed from acquiring other rights or power. In both of these cases, we are speaking mainly of power in the personal sense, what many scholars refer to as empowerment—that is, the power to make decisions to control one’s own life. Poverty and denial of human rights rob people of their personal power by denying them choices. People suffering under the burden of poverty must constantly think about short-term survival. Decisions are economically driven and calculated to provide basic needs today. In this context, the freedom to make choices, such as whether to engage in transactional sex to be able to buy food or to submit to an unfaithful partner to keep him from leaving altogether, becomes meaningless. Information is also a form of power, in that it too may potentially increase choices, but again, when basic human rights are denied, or a person is forced by poverty to make decisions to ensure short-term survival, information can become either irrelevant (such as the knowledge that condoms can prevent HIV transmission to a sex worker or prisoner who does not have the power to negotiate condom use) or inaccessible (such as the pamphlet that is unreadable to the illiterate young woman who was pulled out of school by her impoverished parents who were unable to pay her school fees). Well before AIDS, but certainly reinforced by it, most of the world’s societies dichotomized those who are powerless into two categories: the “innocents” and the “others.” Innocents are those who are seen to have fallen on their ill fortune (in this case, infection with HIV) for reasons not of their own choosing. Although this is the way that innocents are viewed, they are in fact almost always operationally defined by the method of their HIV transmission, which must be nonsexual and not involving injection drug use on the part of the infected. In the context of AIDS, an important “innocent” category has usually included infants and children who were born to infected mothers (though not, as Chapter 5 details, those mothers, even if they had acquired HIV within their marriages). People of all ages who acquired HIV infection from blood transfusions, blood products (as in the case of people with hemophilia), and occupational exposure (as in the case of health workers) have also been labeled as “innocents.” The “others” are the remaining overwhelming majority of the HIV-positive who acquired their infections through sexual activity or injection drug use, which are both considered to be “choices” made by the participants in almost all circumstances (except, perhaps, for rape in some, though by no means all, contexts). Questions of poverty and human rights abuses rarely impact the societal thinking processes where these dichotomies are created. The “noninnocent” are presumed to have had sufficient personal power, or autonomy, to have avoided their infections, even in cases where that presumption is clearly tenuous. Thus the HIV-positive prisoner (rather than the prison system that fails

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to stop sexual coercion and predation) is seen as responsible for his infection. He is viewed as having “decided” to submit to sexual activity, or at the very least to have “brought it on himself” by becoming incarcerated. Similarly, the teenage girl has “decided” to do sex work in any of hundreds of urban areas around the world. In neither case is the context of the decision the issue; rather, the focus is upon supporting the highly suspect assumption that the individual in question had a choice in avoiding the risky behavior. The ways in which societies deal with these two groups offer an interesting facet of the power dynamics of HIV and AIDS. The two groups are dealt with very differently in terms of policies directed at ameliorating the effects of AIDS. Certainly at a rhetorical level, and usually at a policy level as well, societal groups and governments are much more likely to direct resources for care, treatment, and support to “innocents” than to “others.” Recognizing this, savvy groups in the United States have used this innocent face to front their lobbying efforts. This was the case for the major piece of AIDS-specific legislation enacted to provide care, treatment, and support to people living with HIV/AIDS. The title of the legislation, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, was selected in memory of the most famous HIV-positive hemophiliac in the United States. In addition, legislators again and again invoked the memories and stories of people from the “innocent categories” in pushing for passage of the act.18 In a similar action, even now-retired Senator Jesse Helms, one of the most notorious campaigners against most AIDS legislation to come before Congress, chose to end his career in the Senate with an impassioned push for additional funding to prevent mother-to-child transmission of HIV in Africa.19 Yet despite this willingness to provide resources on the behalf of “innocents,” these groups are actually treated remarkably like the “others” when it comes to issues of power. Groups and governments are willing to provide resources and palliative policies for these “victims”; what they are not willing to do, for either side of the affected dichotomy, is to fundamentally alter power balances that would shift control of decisions affecting those resources, or their circumstances of risk, to either group. For example, as hemophiliacs in the United States have discovered, it is difficult but possible to get money from the government (in the form of “relief aid” but not “compensation,” which would have acknowledged guilt on the part of the government), but it has not been possible to achieve legislation pinning future liability to corporate actors (pharmaceutical manufacturers of blood products), an outcome that would require a reshuffling of power relationships among government, corporate actors, and “victims” (who would in such an event become empowered consumers).20 The innocents, in a sense, are caught in a kind of devil’s deal: in order to acquire the resources they seek, they must act the part of “victim,” which is by definition a role of powerlessness.

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AIDS and Power at the Organizational Level The empowerment, or lack thereof, of individuals has direct results at the organizational level as well. One way to keep people from organizing to challenge power relationships among and within societal institutions, including government, is to keep these people constantly struggling against poverty and oppression for sheer survival. Just as these conditions make it impossible, or at least extraordinarily difficult, to think about the long term in personal terms, so too do they often render collective activity a luxury, if the benefits of that collective activity are either not guaranteed or long-term. Scholars of African gender politics have found, for example, that women are kept from organizing not only by cultural norms but also by sheer demands of daily work to survive: organizing work detracts from the extraordinarily time- and labor-intensive tasks of gathering water and fuel, cultivating crops, selling at a market, washing, and taking care of the ill and children that are forced upon women in order to keep their status in families where they cannot own property or control financial resources. One study in Uganda, for instance, found that women worked an average of sixteen hours a day, compared to only five for men.21 This disempowerment is made worse by AIDS. One of the most neglected negative consequences of HIV/AIDS is the additional work burden it has imposed on women and girls. These female household members have no choice but to assume roles as caregivers, usually regardless of their age and other life goals, when AIDS strikes a family. As Noleen Heyzer, head of the United Nations Development Fund for Women (UNIFEM), graphically pointed out, the consequences, in terms of both human misery and the prospects for empowerment, are abysmal: “Fields go untended. Sick and well go hungry. Development is postponed. Girls are pulled out of school. Women remain at home, outside the public sphere, excluded from decision-making, deprived of opportunities to become selfreliant, economically independent, full citizens with power and authority over their own lives, and participatory roles in the world they inhabit.”22 The power to organize or not in turn has enormous implications for power relations among groups within the state and between groups and the state. By organizing, HIVimpacted individuals can compel other actors to either step aside when they are blocking change (for example, when conservative elements of organized religion actively block condom distribution or the individual empowerment of women) or to be a part of the solution (as when activists mount campaigns demanding that multinational corporations such as Coca-Cola and international mining corporations provide treatment and prevention services for all their employees). In addition, the power to organize allows groups to make demands of the state, either as an intermediary among actors to redistribute power, benefits, and burdens (such as forcing the state to regulate employers

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on issues such as AIDS discrimination and the provision of treatment) or as a direct provider of financial resources, treatment, prevention information, research, and a host of other services. In addition, in the case of relatively weak states, organizations can push the direction of their governments’ requests to more powerful states, for example, by promoting the emphasis of treatment rather than merely prevention in the applications that poor countries make to the Global Fund. Even with the ability to organize, groups attempting to challenge the status quo are often stymied from the outset. This is because of the success of opposing groups in keeping AIDS, and certain AIDS policy ideas, as nonissues and therefore not even open to debate and decisionmaking. The Bachrach and Baratz argument outlined previously becomes a very useful explanatory tool. For a disease that shows every sign of reaching proportions not seen since the Black Plague (and in some places it has already reached that stage), the slow speed with which commensurate policies have been undertaken by countries that could effectively address the problem with relatively cheap outlays of resources is quite astounding. As some of the other chapters in this book will further illustrate, the same is true of other AIDS-related policy arenas, such as the changes in international trade regimes discussed in Chapter 11. Consider Bachrach and Baratz’s description of the techniques available for the exercise of elites: “Demands for change in the existing allocation of benefits and privileges in the community can be suffocated before they are even voiced; or kept covert; or killed before they gain access to the relevant decision-making arena; or failing all these things, maimed or destroyed in the decision-implementing stage of the policy process.”23 Although written long before AIDS emerged to become a global health catastrophe, it is hard to imagine a more prescient description of the way that the pharmaceutical industry—powerful as both a domestic actor with tremendous leverage over national governments, particularly that of the United States, and as a highly influential multinational corporate sector on the international level—was able to successfully keep the policy option of medical treatment for the approximately 6 million people living in developing countries who need it off the table as even an item for discussion for approximately fifteen years. (It should be noted that this was not the case for domestic activists in wealthy countries with greater power resources, as illustrated below.) Not until around the year 2000 were global-treatment AIDS activists, together with a less powerful country (Brazil), able to articulate their demands at an audible level. They did this primarily by puncturing the fictional bubble being perpetuated around the supposed cost of supplying these drugs and by insisting on representation of people living with HIV/AIDS in spaces where decisions are made and opinions are influenced. At that point the industry focused on activities designed to thwart the decision-implementing stage of the policy process. For example, it offered its own plan, the so-called Accelerated Access Initiative that would

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create limited country-by-country, medicine-by-medicine time-bound negotiations for access to essential medicines. In those cases where individuals have been able to overcome the multiple faces of power of their opposition, a global hallmark of AIDS activism has been the creative use of alternative forms of power to achieve political victories over opponents with much greater resources. In the United States, the AIDS activist group AIDS Coalition to Unleash Power (ACT UP) was born in 1987 with a successful inaugural protest against pharmaceutical giant Burroughs Wellcome for its (high) pricing of the first specific anti-HIV drug, azidothymidine (AZT). AIDS activists marked the late 1980s and early 1990s by successfully challenging the clinical trials system in which experimental AIDS drugs were tested; the drug pricing and availability policies of pharmaceutical companies; regulatory and other laws set by state, federal, and local government; resources made available by the federal government for prevention, treatment, and services; and other issues. In Brazil, home to an AIDS prevention and treatment program that has been hailed as one of the most successful in the world (perhaps even the most successful), AIDS activists were similarly able to convince their government to set policies against the explicit wishes of both the World Bank and the US government. And in South Africa, the activist group known as the Treatment Action Campaign (TAC) was able to lead the way to a stunning victory when it forced thirty-nine of the largest pharmaceutical companies in the world to withdraw their case against the South African government, an attempt to force the country to invalidate its own Medicines Act, which had been passed to guarantee access to cheaper medications for its citizens. In an unusually frank assessment of the reason for withdrawing the lawsuit, GlaxoSmithKline chief executive J. P. Garner backed up industry analysts who called the situation a “public relations disaster for the companies” with the admission that “we don’t exist in a vacuum. . . . We’re not insensitive to public opinion. That is a factor in our decision-making.”24 AIDS and Power in International Settings The latter two cases of Brazil and South Africa suggest as well that power considerations are critical at the level of international politics. These two examples suggest it is possible for less powerful organizations and states to leverage nontraditional (“soft”) power against more powerful states and international entities such as multinational corporations. This leveraging also suggests an interesting twist on the model of global advocacy suggested by Keck and Sikkink in describing transnational advocacy networks (TANs).25 According to this model, the “boomerang pattern” has become a key mechanism for advocacy networks to use to pursue their goals. The pattern occurs when domestic actors are blocked from directly applying pressure to the state. Thus, they go outside the state and connect with international allies who in turn

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apply pressure to their states (or in some cases, third parties such as international governmental organizations) to apply pressure to the original target state. Keck and Sikkink noted that human and indigenous rights campaigns, as well as locally based environmental campaigns, all frequently involve this dynamic. The addition that the case of AIDS and particularly the country of Brazil suggest for this dynamic is that it is possible for a less-powerful state to use this same pattern, often coordinated with the same types of NGOs that in the first version of the pattern would be working in opposition to it. Thus, for example, when the state of Brazil sought to have the United States drop its active opposition to Brazil’s provision of locally produced generic drugs (a policy developed in part because of pressure by domestic NGOs), it used the ties forged between Brazilian NGOs and international treatment access activists and also forged those ties directly. The international (especially USbased) activists then helped to pressure the US government on Brazil’s behalf. Cumulatively, the Brazil experience suggests two things: first, a weaker state can leverage soft power (in this case, in the form of both the moral argument in favor of providing health as a human right and the efficacy argument that Brazil’s methods were desirable relative to the policies proffered by the United States because they also work) against a stronger one, and second, new configurations of less-powerful actors can be critical in tilting the balance of power. But as with the examples at the individual and organizational levels, these examples are suggestive of possible, but by no means typical, outcomes, in AIDS-related power interactions at the international level. It is worth repeating that the power differentials involved in the dynamics of HIV/AIDS are often very stark, and this is particularly true at the global level. One of the starkest dimensions of this inequality is revealed through even the most cursory examination of the distribution of disease burden relative to the resources for dealing with it. As noted below, HIV/AIDS is heavily concentrated in certain regions of the world, most notably sub-Saharan Africa, which is also the poorest region of the world. Of the nearly 40 million people estimated to be living with HIV on the planet, an estimated 25.4 million of them (almost twothirds) live in sub-Saharan Africa, compared to the estimated 1.7 million (4 percent) living in the high income areas of North America, Western Europe, Japan, Australia, and New Zealand.26 Yet the distribution of resources is almost exactly the inverse. Not only do the latter countries house the bulk of the world’s wealth generally, they also control almost all of the AIDS-specific resources that the world has to offer. In addition to the actual wealth that makes provision of other resources possible, these countries control and have easy access to patented antiretroviral medications (produced primarily by a handful of multinational pharmaceutical giants headquartered in the United States, Great Britain, and Switzerland); extensive health care infrastructures and highly trained medical personnel (including many talented medical pro-

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fessionals who are part of the “brain drain” flowing from developing to developed countries); laboratory and clinical research facilities for development of new drugs, vaccines, diagnostics, and prevention tools; sophisticated communications systems and media firms that both generate and disseminate materials that determine our knowledge and attitudes about HIV/AIDS; and wellfunded (by global standards) state and nongovernmental social service networks that can support people living with and affected by HIV/AIDS. Although many of these resources may not fall into the usual vision of the components of power, in the global AIDS context they most assuredly are. Through their control of both donations and financial policies regarding, for example, the debt of poor countries, the wealthy nations have obvious power advantages. But because so many of the tools for containing and managing the effects of HIV have been developed in, and are owned by, wealthy states or groups within them, these tools constitute a second power advantage akin to the “faces of power” concepts discussed previously. The powerful control the weaker not merely because they control the purse strings: they also control the issue agenda. Their power over, and association with, the drugs and the “experts” and ideas that have shaped the epidemic means that they control the global agenda of HIV/AIDS. They have disproportionate decision power over whether antiretroviral medications are appropriate for poor countries. They determine what types of research should be done (such as whether to focus vaccine research on HIV subtypes more common in developed than developing countries) and not done (such as developing women-controlled microbicides as prevention tools). And to a large extent, through policies such as structural adjustment, they even help determine whether HIV/AIDS will be a spending priority within developing countries. As the next section seeks to illustrate, the magnitude of the global HIV/AIDS crisis makes this power differential all the more important and the need to redistribute not only financial aid but also power itself to countries, groups, and individuals seeking to find ways to prevent and deal with AIDS all the more urgent. Of course, the fact that the great bulk of tools, resources, and professionally trained “experts” dealing with global AIDS is based in Western countries does not mean that these entities are monolithic. Within professional circles, for example, there are debates among individuals with varying degrees of understanding of, and resonance with, developing country activists and experts. And in fact, this diversity within the resource base, and especially the human resource base, offers two other power opportunities that both domestic and global activists have seized to their advantage. The first of these “power opportunities” comes from leveraging the “soft” power (i.e., power of persuasion and influence) of notable individuals who are in alliance with the goals and visions of activists and affected communities. United Nations Special Envoy for AIDS in Africa Stephen Lewis and Jeffrey Sachs, director of the United Nations Millennium Project, are two among numerous examples

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of influential professional experts who have worked in close cooperation with activist communities in using their positions to expand the power resources of activists and their campaigns. The second such power opportunity is derived from the experiences of domestic AIDS activists in several countries, most notably the United States and Brazil. In both countries, mobilization began as an isolated urban phenomenon, in New York City and San Francisco and in São Paolo, respectively. Activists in both places understood that the key to power was not in prevailing in a given controversy but in defining the agenda of decisionmakers. And the key to power over the agenda was representation at the institutions of power, beginning at that time in local city and, eventually, state and national governments. Thus a hallmark of successful AIDS activism is inclusion of people living with HIV/AIDS at all levels of decisionmaking, as exemplified by the demands of the Denver Principles, a declaration made by early organizers of the movement in the United States of people living with HIV/AIDS, which called for inclusion of these people throughout decisionmaking processes.27

Conclusion On an academic level, HIV/AIDS offers us an opportunity to think about power in a truly comprehensive way. AIDS-related interactions at the individual, societal, national, and international levels all occur in ways that allow us to consider power as both the independent variable (as when power determines individual choices available to people, groups, and countries) and the dependent variable (as when HIV/AIDS is used in ways to disempower or to perpetuate unequal power relationships). Yet AIDS also furnishes compelling cases where traditional models of power dynamics fail to predict outcomes of power struggles. Brazil’s successful defiance of stronger national and international actors, the stand-down of the powerful pharmaceutical industry in its unsuccessful attempt to take the South African government and its people to court, and the ability of AIDS activists groups to establish, at least in some countries, a rights-based paradigm for addressing the pandemic are all results that have been achieved by actors with fewer tangible power resources than those they opposed. Clearly, this is one issue area that offers a deeply valuable learning opportunity for scholars of all types seeking to better understand fundamental principles of power and how human beings exercise it. Yet in considering why AIDS and, by extension, this book matter, a far more compelling argument can be made by turning the previous argument on its head. Fascinating though the lessons of AIDS may be for scholars from many disciplines and perspectives, intellectual curiosity should not be the goal of our analyses. Rather, we must remember that the value of scholarship exists in its ability to relieve the great human problems of our world and our

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fellow human beings. AIDS represents one of the greatest human tragedies, possibly the greatest, in centuries. We must never lose sight of the fact that the still-growing AIDS pandemic also represents enormous human failure. Although we do not yet have a cure or a vaccine, we know how AIDS is transmitted and ways to prevent these transmissions. We have antiretroviral medications capable of greatly expanding both the length and quality of life of people living with HIV. And we almost certainly have the scientific capabilities to provide even more powerful tools in the forms of new prevention methods and medications if only the will existed to back these efforts with resources. Thus, the tragedy of AIDS is not that the world is helpless in the face of this crisis. The tragedy is that some people are deliberately being deprived of the forms of power at the individual, societal, national, and international levels that would allow them to implement these solutions while others with power are blocking these solutions at all these levels. It is crucial that we seek to understand these uses and abuses of power so that we can contribute, in whatever ways possible, to reconfigurations of these powers that will help bring an end to this source of human misery. Perhaps one of the most radical conclusions that can be drawn from the foregoing analysis is that a charity-based model cannot solve the crisis explored in this book. In the push to find desperately needed resources for coping with HIV/AIDS, charity-based organizations and individuals have often found common cause with more radical AIDS activists, to the point that often the terms “AIDS charities” and “AIDS activists organizations” are used interchangeably. Yet, from a power perspective, they can be very different. The universe of charities and activists groups is a large and heterogeneous one, but, generally speaking, there are several key differences between the traditional charity-based group and one that is identified as activist. One is in the perceived role of resource transfer. Both types of groups seek to ensure the transfer of resources from rich nations and individuals to poorer ones, but the groups differ on whether they view this as the major goal (charities) or a means to the end of deeper structural changes regarding distributions of power (activist groups). Another is that they also have different underlying motivational emphases, with charities distinguishing among beneficiaries’ levels of deservedness and activist groups operating from a rights-based perspective that rejects these differences. The dangers of predicating a response to this global AIDS crisis on a commitment to charity was clearly spelled out by Barnett and Whiteside: And what is wrong with charity? What is wrong with charity is its personal, fickle nature; its air of dependence of the weak and poor on the will and disposition of the rich and powerful. What is wrong with charity is that it is subject to the vagaries of short-term funding. What is wrong with charity is that it should be a complement to, not a substitute for, concerted social, economic and political commitment and action for common welfare.28

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Although there is a desperate need for the transfer of resources from rich countries and individuals to poorer ones and to projects on their behalf, for the purposes of prevention, treatment, research, and a host of other activities, this is, at best, only half the story. Charity is an inherently flawed approach to the problem of AIDS because it leaves unresolved the fundamental problem of power inequity (see Chapter 13). In other words, charity is a means of transferring resources without altering power relationships. In fact, in many respects, it often reinforces the powerlessness of recipients, rendering them dependent on their benefactors and unable to challenge either the policies dictated to them or the power arrangements that place them in dependent positions.29 It is certainly not coincidental that the strong majority of the “power success stories” described in this book and elsewhere—of AIDS activist groups such as ACT UP and South Africa’s Treatment Action Campaign, for example—have never accepted funds from their governments or from the pharmaceutical industry that funds many AIDS NGOs worldwide. Because of this, they have never been in the position of being judged “worthy” or not by their governments and have had the relative luxury of advocating for transfers not only of resources, but also of power—in the forms of representation, agenda setting, and decisionmaking, among others—at the individual, societal, and global levels. As all the chapters in this book will illustrate in some form, HIV/AIDS has been able to ruin the lives of millions of people around the world because of underlying conditions of inequity and oppression, which are themselves the consequence of unjust distributions of power. From the individuals who have been stripped of the right to make decisions about their own sexual behaviors to groups who cannot petition government for fear of revealing their members’ identities within stigmatized populations to struggling states that are not allowed to commit additional resources to crises within their borders, it is the denial of power that enables HIV/AIDS and the damage it causes to escalate. It will only be through the redistribution of power, at many levels, that it will be brought under control.

Notes I am deeply indebted to my coeditor, Paul G. Harris, for both his insight and wisdom in helping me think through the ideas contained in this chapter and for his superior organizational and editing skills in seeing this project through to completion. I would also like to thank my colleagues at Health GAP for their many insights in helping me to see the profound ways in which power inequities have contributed to the Global AIDS crisis. 1. Unlike the AIDS Coalition to Unleash Power (ACT UP) in the United States, which uses the conventional acronym format of capital letters, Act Up Paris capitalizes only the first letter of each word. We have tried to follow these differing conventions within this book.

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2. This anecdote and the previous one are drawn from Chapters 5 and 8 of this book. 3. See Alan Beattie, “Lack of AIDS Fund Cash Hits Poor Nations’ Bids,” Financial Times (London), April 22, 2002, 9, and Jon Cohen, “HIV/AIDS: Malawi: A Suitable Case for Treatment,” Science 97, no. 9 (August 2002): 927–929. 4. Joseph Nye, “Limits of American Power,” Political Science Quarterly 117, no. 4 (Winter 2002): 548. 5. Harold Lasswell and Abraham Kaplan, Power and Society (New Haven, CT: Yale University Press, 1950), 75, quoted in Peter Bachrach and Morton Baratz, “Two Faces of Power,” American Political Science Review 56, no. 4 (December 1962): 948. 6. Srilatha Batliwala, “The Meaning of Women’s Empowerment: New Concepts for Action,” in Population Policies Reconsidered: Health Empowerment and Rights, ed. Gita Sen et al., 130–131 (Cambridge, MA: Harvard University Press, 1994). 7. G. William Domhoff, Who Rules America? Power and Politics, 4th ed. (Boston: McGraw-Hill, 2002), 10–13. 8. Batliwala, “The Meaning of Women’s Empowerment,” 131. 9. Rekha Datta and Judith Kornberg, “Introduction: Empowerment and Disempowerment,” in Women in Developing Countries: Assessing Strategies for Empowerment, ed. Rekha Datta and Judith Kornberg, 2 (Boulder: Lynne Rienner, 2002). 10. Aili Marie Tripp, Women and Politics in Uganda (Madison: University of Wisconsin Press, 2000), 4. 11. Ibid., 4–5. 12. Peter Bachrach and Morton Baratz, “Decisions and Nondecisions: An Analytical Framework,” American Political Science Review 57, no. 3 (September 1963): 641. This article was preceded by Peter Bachrach and Morton Baratz, “Two Faces of Power,” American Political Science Review 56, no. 4 (December 1962): 947–952. 13. Nye, “Limits of American Power,” 550. 14. Dan Clawson, Alan Neustadtl, and Mark Weller, “Why Does the Air Stink? Corporate Power and Public Policy,” in Voices of Dissent: Critical Readings in American Politics, 5th ed., ed. William Grover and Joseph Peschak, 36 (New York: Pearson Longman, 2004). 15. Nye, “Limits of American Power,” 551. 16. See, for example, Alex Irwin, Joyce Millen, and Dorothy Fallows, Global AIDS: Myths and Facts (Cambridge, MA: South End Press, 2003), especially chap. 2; Tony Barnett and Alan Whiteside, AIDS in the Twenty-First Century: Disease and Globalization (Basingstoke, Hampshire, England: Palgrave Macmillan, 2002); and Gerald Stine, AIDS Update 2001 (Upper Saddle River, NJ: Prentice Hall, 2001), 12. 17. For one of the last articulations of Mann’s views before his death, see Jonathan Mann, “AIDS and Human Rights: Where Do We Go from Here?” Health and Human Rights 3, no. 1 (1998): 143–149. An example of an argument that explicitly links one AIDS-related human right (medical treatment) to others is found in Joanne Csete, “Several for the Price of One: The Right to AIDS Treatment as a Link to Other Human Rights,” Connecticut Journal of Law 17, no. 2 (2002): 263–272. The nongovernmental organization Human Rights Watch has also provided numerous reports on countries around the world, documenting links between specific human rights denials and HIV/AIDS. All of these are available on their Web site at http://www .hrw.org/doc/?t=hivaids_pub. 18. Mark Donovan, “The Politics of Deservedness,” in AIDS: The Politics and Policy of Disease, ed. Stella Theodoulou, 68–87 (Upper Saddle River, NJ: Prentice Hall, 1996).

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19. Adam Clymer, “Helms Reverses Opposition to Help on AIDS,” New York Times, March 25, 2002, 22. 20. For a discussion of the politics surrounding the hemophilia community’s quest for justice in the United States, see Patricia Siplon, AIDS and the Policy Struggle in the United States (Washington, DC: Georgetown University Press, 2002), chap. 3. 21. This study was cited in Tripp, Women and Politics in Uganda, 142. 22. Noleen Heyzer, “Address to the United Nations General Assembly Special Session on HIV/AIDS,” New York, 2001. Available at http://www.un.org/ga.aids/ statements/docs/unifemE.html. 23. Peter Bachrach and Morton Baratz, Power and Poverty: Theory and Practice (New York: Oxford University Press, 1970), 44, quoted in Geoffrey Debnam, “Nondecisions and Power: The Two Faces of Bachrach and Baratz,” American Political Science Review 69, no. 3 (September 1975): 892. 24. Quoted in Rachel Swarns, “Drug Makers Drop South Africa Suit over AIDS Medicine,” New York Times, April 20, 2001, A1. 25. This model is fully described in Margaret E. Keck and Kathryn Sikkink, Activists Beyond Borders: Advocacy Networks in International Politics (Ithaca, NY: Cornell University Press, 1998). 26. These numbers are taken from the report put out annually by UNAIDS on World AIDS Day (December 1). See UNAIDS, AIDS Epidemic Update (Geneva: UNAIDS/WHO, 2004), 3. Available at http://www.unaids.org/wad2004/EPI_1204_ pdf_en/ (accessed August 22, 2004). 27. For an account of the proclamation of the Denver Principles, see Raymond A. Smith and Patricia Siplon, Drugs into Bodies: Global AIDS Treatment Activism (Westport, CT: Praeger, 2006), 17–18. 28. Barnett and Whiteside, AIDS in the Twenty-First Century, 349. 29. An eloquent description of this relationship is offered by Paolo Freire, Pedagogy of the Oppressed (New York: The Seabury Press, 1970), 28–29.

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POLICY

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4 The Government-NGO Disconnect: AIDS Policy in Ghana Bernard Haven and Amy S. Patterson

This chapter analyzes how indigenous NGOs in Ghana have affected the development of AIDS policies in that country. Specifically, we examine the role of NGOs that have as their central issue HIV/AIDS. We do not deny that a variety of groups has developed care, support, and prevention programs for HIV/AIDS. Because we believe that organizations that concentrate on AIDS are the groups most likely to become politically active on the issue, however, we focus on these associations. This chapter argues that there are three reasons that indigenous AIDS NGOs have played a minimal role in the development of AIDS policies in Ghana. First, resource limitations and coordination problems among Ghana’s AIDS NGOs hamper their effectiveness. Second, institutions that design and implement AIDS policies structurally exclude many of these NGOs. Third, Ghana’s social and political context hampers the ability of AIDS NGOs to generate long-term and widespread public support for AIDS programs. This chapter uses the concept of civil society as a lens through which to investigate the role of NGOs in Ghana’s fight against AIDS. We define civil society to be the collection of organizations such as faith-based groups, business organizations, and women’s groups that are autonomous from government, represent their members’ interests in the political process, and hold government accountable. Ideally, civil society organizations may bring issues to the policymaking agenda, push the state to implement policies, and reward or punish elected officials through periodic elections. In Africa, civil society often provides social services such as education and health care that the state cannot (or will not) supply.1 There are two reasons that Ghana is a unique venue in which to study the role of civil society in the development of AIDS policies. First, with an HIVprevalence rate of 2.3 percent in 2005 (down from roughly 4 percent in 2004), Ghana has not suffered from AIDS to the extent that southern African countries 65

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have.2 The highest rates within Ghana are in the Eastern (6.5 percent) and Western (4.6 percent) regions where migration and cross-border trade are heavy; the lowest rate in Ghana is in the rural, isolated Northern Region (1.8 percent).3 Fifty-six percent of those infected in Ghana are women.4 Ghana is at a crucial stage in the AIDS fight: the country may prioritize the disease in hopes of keeping its HIV prevalence relatively low, or it may become complacent about the disease, with the result that HIV may spread. AIDS NGOs, as part of civil society, can play a crucial role in determining which path Ghana takes. On the other hand, because AIDS may not be perceived as a crucial issue, AIDS groups may have a more difficult time mobilizing support than in more highly affected countries such as South Africa. Second, Ghana is also somewhat unusual in sub-Saharan Africa because it has undergone a democratic transition. In 1992, President Jerry Rawlings and his National Democratic Congress (NDC) wrote a new constitution and held a multiparty election that was criticized by international observers and boycotted by the opposition.5 The multiparty elections of 1996 were believed to be free and fair, though Rawlings was reelected, and the NDC kept a majority of seats in the legislature. Barred from running for a third term in 2000, Rawlings stepped aside, and his handpicked successor, Professor John Evans Atta Mills, campaigned as the NDC presidential candidate. In a run-off election, Mills lost by a margin of 57 percent to 43 percent to John Kufour, the candidate of the National Patriotic Party (NPP); the NPP also won 100 of the 200 legislative seats.6 In 2004, Kufour was reelected with 53 percent of the vote, and the NPP won 129 of the 230 legislative seats.7 The democratic transition has meant that Ghanaian society has become more open, with an independent media and active opposition parties.8 Ghana provides an opportunity to examine how the civil society organizations that have emerged in this relatively free society can influence AIDS policies. Research for this chapter is based on media reports and documents from the Ghanaian government and international donors. In addition, in 2003 Bernard Haven conducted twenty in-depth, open-ended interviews in Accra with representatives from government agencies, international donors, and AIDS NGOs; since then, he has engaged in a continuing dialogue with leaders of one AIDS NGO, the Ghana AIDS Treatment Access Group (GATAG). Organizational representatives who were interviewed were chosen based on their association’s representation on AIDS decisionmaking bodies and their organization’s objectives in the fight against AIDS. For example, associations with differing views on the need for government to provide access to treatment with ARVs were included. This chapter is divided into six sections. First, we ground our examination of AIDS NGOs in the literature on civil society in Africa. Second, we outline the basic aspects of AIDS policies in Ghana. In the third, fourth, and fifth sections, we examine the above-mentioned variables that limit the role of AIDS

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NGOs in Ghana: resource constraints, exclusion from decisionmaking institutions, and the larger social and political environment of Ghana. The concluding section raises questions about the role that AIDS NGOs can play in the long-term development and implementation of policies to fight AIDS in Africa.

Civil Society in Sub-Saharan Africa The literature on civil society illustrates the limits that AIDS NGOs may face when lobbying the African state, even in a relatively open and democratic political system such as Ghana’s. Civil society organizations in democracies may influence public health decisions in a variety of ways. On the one hand, democratic societies provide opportunities for civil society to lobby for increased health spending, to publicize health concerns, and to pressure producers to develop health products and services. The watchdog role of civil society groups in promoting public health is one reason that infant mortality rates tend to be lower in democracies than in dictatorships.9 On the other hand, civil society organizations such as labor unions and business groups in countries undergoing transitions to democratic, capitalist systems may pressure state officials to create jobs, bring down inflation, or promote trade. The immediate needs of the population may mean that government cannot or will not invest in health spending.10 This fact may be especially true for investments in AIDS prevention, since the societal impact of the disease is not felt until several years after citizens are infected with HIV. Both of these perspectives assume that civil society associations will lobby for government policies, either to the benefit or the detriment of public health. In the United States, for example, interest groups such as the AIDS Coalition to Unleash Power or the National Hemophilia Foundation played an important role in shaping AIDS policies.11 Although proponents of African civil society argue that these organizations helped push for democracy in the 1990s,12 critics maintain that civil society in Africa lacks the organization to lobby the state for specific policy goals.13 Civil society may be divided along class, gender, ethnic, and religious lines.14 Associations in civil society often lack resources such as leadership, institutional capacity, and finances; the state or international donors also may co-opt these organizations.15 Groups in civil society may need to develop institutional links to the state to receive resources or recognition, but paradoxically, if they do so, then they may not effectively challenge state actions. In contrast, organizations that actively oppose the state may suffer repression. Organizations lacking resources may become dominated by charismatic leaders.16 All of these aspects of civil society affect the creation of AIDS organizations. In addition, the nature of AIDS itself further complicates the formation of groups to represent people living with HIV/AIDS. Throughout sub-Saharan

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Africa, people living with HIV/AIDS face stigma and ostracism. Because potential members and leaders of AIDS groups may not want their sero-status to become public, they may not form organizations.17 If people living with HIV/AIDS do form associations, their precarious health situation may limit the group’s effectiveness. Research from South Africa shows how the loss of HIVpositive personnel in community groups can have a negative effect upon those organizations and their workers.18 Organizations that rely on charismatic leaders may disintegrate when leaders die from AIDS. As we illustrate below, these limitations of African civil society are evident in the development and influence of AIDS NGOs in Ghana.

AIDS Policies in Ghana This section summarizes the predominant institutions involved in the development of Ghana’s AIDS policies, outlines the sources of funding for AIDS programs, and highlights governmental actions to combat AIDS. To begin, though, it is important to note that Ghana’s government policies are not the sole reason that Ghana’s HIV prevalence rate is low in comparison to many southern African countries. Rather, AIDS has not had the same opportunities to spread in the country because transportation links are not as developed and labor migration is not as prevalent as in southern Africa. The country appears to be in the early stages of the epidemic; policy decisions and individual behavior choices will determine if the country reaches infection rates of 20 to 30 percent.19 In such a situation, AIDS NGOs have a unique opportunity to shape how proactively the government addresses AIDS. Currently, policies pay little attention to the potential long-term impacts of the disease, such as the need for more teachers or health-care workers to replace those who die from AIDS.20 AIDS policymaking in Ghana has followed a three-pronged international formula known as the Three Ones policy. This global formula, endorsed by donors in 2004, calls for one AIDS “action framework,” one national, multisectoral coordinating body, and one monitoring and evaluation system.21 Three national groups design, implement, and monitor HIV/AIDS policies in Ghana: UNAIDS, the Ghana AIDS Commission (GAC); and the Country Coordinating Mechanism (CCM), which secures funding for the National AIDS Control Programme (NACP). UNAIDS was instrumental in developing Ghana’s first five-year action framework, known as the National Strategic Framework, which the Ghanaian cabinet endorsed in 2000. UNAIDS operates a Theme Group that has developed technical guidelines for voluntary counseling and testing, ARV treatment, and other procedures outlined in the National Strategic Framework. Members of this Theme Group include heads of various government ministries and select

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international and indigenous NGOs. The Theme Group also works with GAC to mobilize support for AIDS programs.22 GAC, a multisectoral extension of the president’s office, coordinates implementation of the National Strategic Framework and oversees all national AIDS programs. It has representatives from national ministries, international and indigenous NGOs, bilateral and multilateral donors, and AIDS groups. Prior to the formation of GAC in 2000, the government viewed AIDS solely as a health concern and situated policymaking in the ministry of health. Few state resources were channeled to the disease, and high-level political leaders rarely spoke about the issue.23 In addition, GAC disburses money from the Ghana AIDS Response Fund (GARFUND) to NGOs, community-based organizations (CBOs), and ministries, departments, and agencies whose prevention, care, and support projects complement the National Strategic Framework.24 Established as part of the World Bank’s Multi-country HIV/AIDS Program, the GARFUND was initially funded by a $25 million loan from the World Bank in 2000. The UK Department for International Development (DFID) also contributed £20 million over four years to further assist GAC. NGOs and ministries, departments, and agencies apply directly to GAC for their funding for projects. CBOs apply to district assemblies, which in turn apply to GAC for regional funding. As of 2003, the GARFUND had supported more than 2,600 projects in every region and district of the country.25 For organizations without personal wealth or connections, the GARFUND is an essential funding mechanism. In terms of AIDS policies, the government has tried to raise AIDS awareness and challenge the stigma attached to the disease. President Kufour discussed AIDS in his first state of the union address in 2001, urging Ghanaians to speak frankly about sex to prevent the spread of HIV.26 Both the president and the first lady have worked with traditional rulers such as the Okyehene and the Queen Mothers Association to develop prevention messages.27 GAC has opposed any mandatory testing for government jobs or marriage.28 Ghana has worked to educate the population through media campaigns, many designed by Johns Hopkins University, and it has stressed prevention messages such as abstinence, healthy living, and faithfulness.29 The government has sought to secure funding for these initiatives. The third actor in AIDS policymaking—the CCM—was set up to design and write grant proposals to the Global Fund to Fight AIDS, Tuberculosis, and Malaria (GFATM). In 2002, Ghana was granted $15 million to increase the number of sites for voluntary counseling and testing, expand the number of programs for prevention of mother-to-child transmission, establish three centers for care, and include limited access to ARVs at several care sites. In 2006, Ghana’s CCM secured an additional $97 million for a five-year program to scale up treatment access in high-prevalence regions.30 The chapter now examines the role of AIDS NGOs in these government actions and the factors that have shaped the effectiveness of such organizations.

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AIDS NGOs: In Search of Resources, Coordination, and Clout Though there were an estimated 1,500 NGOs and CBOs working on AIDS in Ghana in 2003,31 few had the resources, coordination, or clout to affect national AIDS policies. Limited access to resources is one of the most difficult challenges for these groups. Most local groups are financially, experientially, and bureaucratically incapable of constructing bid proposals for contracts from international development agencies such as USAID or of applying to international bodies such as the GFATM. Further, it is highly unlikely that a group could ask for pledges from an impoverished general public. Instead, startup funding for many NGOs comes from the personal contributions of founding members or the wealthy contacts of leaders. This commitment is often limited in size but fosters careful spending and accountability. A negative aspect is that these resources may encourage personalization of groups because of financial reliance on the founders or their contacts. One such group is the West Africa AIDS Foundation (WAAF), which was originally founded by Americans and Ghanaians in California, where the director lived for many years. Since then, the group has moved to Ghana but still maintains many of its partnerships and financial connections to the United States. As a result, WAAF was able to access money from sympathetic AIDS groups in California in 2003.32 Should there be a change of leadership, however, the future of these personal connections, and the corresponding funds, would be at risk. The largest, most accessible source of funding for indigenous NGOs is the GARFUND. Despite its significance, the GARFUND is not without problems. GAC has called for proposals from any group undertaking HIV/AIDS projects. Applicants to the GARFUND are required to contribute 10 percent of the total project sum themselves, a contribution that can be made in cash or in kind, through the allocation of offices, equipment, or staff.33 This requirement constrains smaller groups that lack resources. Pitted against one another, small rural groups with uneducated members who have no access to technology or information are unlikely to write proposals that can compete with those from urban groups with educated members who have better access to communication and transportation infrastructure. Rural districts have been the last to apply for and receive GARFUND support, delaying HIV/AIDS activities in these areas. Rural NGOs unable to attend GAC capacity-building and proposalwriting workshops have a much lower rate of success in receiving funding than urban NGOs with better access to these events.34 This GAC funding structure, which many AIDS NGOs term the “neostate policy” because of its emphasis on the state, has become an entrenched part of Ghana’s AIDS efforts. Although this may mean that decisions on AIDS resources are becoming more institutionalized into government procedures, it also means that NGOs that have been excluded from GAC funding priorities continue to be left out.35

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This competitive environment has provided opportunities for NGO entrepreneurialism among groups with no prior HIV/AIDS experience. For example, the Multiple Motivation Foundation (MMF), a Ghanaian organization managed by a local pastor, received a grant of $23,000 from the GARFUND. Originally designed to help foreign investors establish businesses in Ghana, MMF intended to use support from these newly established firms to aid rural farmers. For its AIDS efforts, MMF partnered with another NGO to produce an HIV/ AIDS awareness video with subtitles for the hearing-impaired, which it hoped to market to the Ministry of Education.36 The imaginative proposal from this ambitious group illustrates the advantages and disadvantages of the GARFUND process. Although the process can reward innovative projects, it also may leave out smaller groups that are exclusively committed to HIV/AIDS. A broad variety of NGOs including women’s groups and trade organizations can access the GARFUND, a fact that gives them a stake in the AIDS issue. The welldeveloped proposals from these groups may, however, overshadow those of rural, uneducated AIDS NGOs. The MMF raises broader issues about how some African civil society groups may remake their agendas to tap into AIDS funds. These groups are part of what Ann Swidler described as a complex system of AIDS governance, ranging from “world-spanning donors” to “upstart freelancers” and “entrepreneurial actors at all levels inventing (or reinventing) themselves as actors in the AIDS drama.”37 Since funding for the global AIDS pandemic increased from approximately $1.7 billion in 2001 to more than $8 billion in 2005, there are more resources to reward such entrepreneurialism.38 On the positive side, this may mean new groups take an interest in AIDS. A negative aspect is that it may mean groups with no experience in health or development receive money for poorly designed AIDS projects. In the donor rush to fight AIDS, thorough scrutiny of new AIDS groups may not occur.39 NGOs in Ghana also face challenges in mounting a coordinated effort against AIDS. An umbrella organization intended to represent AIDS NGOs, the Ghana HIV/AIDS Network (GHANET), has a seat on GAC, the CCM, and the UNAIDS Technical Working Group. GHANET has received funding from the GARFUND to conduct programs and to provide limited money to its member organizations. GHANET opens avenues of representation and funding for its members. At GAC, CCM, and UNAIDS meetings, GHANET raises many crucial issues. Located in Accra, the group holds monthly meetings, and it has organized members into regional committees to address local concerns. It also coordinates workshops and passes on invitations to AIDS conferences. In return, groups pay a membership fee of about eighteen dollars annually and are expected to attend monthly and yearly meetings.40 Students Against HIV/AIDS (STAIDS) illustrates the benefits of membership in GHANET. Formed in 1998 by eight university students, STAIDS still had no office space five years later and held meetings only sporadically.

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Because its members are unable to work for STAIDS full-time, the group has a limited ability to write proposals or solicit funds. The group held its largest event in 2000 when it received funding from the GARFUND to hold a rally in a transportation hub, mobilizing students to educate thousands of drivers about HIV/AIDS. Although the group received GARFUND financing, it did not come directly from GAC, which would have required a tedious application, months of waiting, and a 10 percent contribution. Instead, STAIDS received money from GHANET.41 Without membership in GHANET, STAIDS would have been unable to access funds for its rally. GHANET’s capacity-building and proposal-writing workshops help its members write better applications to the GARFUND. “The commission has its own guidelines for the proposal, so we take them through the guidelines, so that they understand exactly where, what to write, what not to write,” said Sam Anyimadu-Amaning, chairperson of GHANET.42 Asked if groups previously denied GARFUND support had received funding after attending these workshops, he said, “Yes. . . . And we will be looking at people who actually haven’t got funding and would want to get assisted in getting funding for their programs.”43 Despite these positive attributes, GHANET has suffered from internal dissent, poor communication, undefined relationships with members, and personalization. Started in 1996, the group grew to a membership of about 450 organizations by 2000, but that number decreased when formal membership fees were introduced.44 Coupled with the required dues, the introduction of new leadership also caused several groups to end their membership in GHANET. By 2003, the organization only had 150 AIDS groups that were members. Because of its small membership, only a fraction of all AIDS NGOs in Ghana receive its benefits. Further, less than half of its members regularly attend the monthly meetings and workshops, and still fewer are involved in its leadership.45 Although GHANET has taken steps to open regional offices throughout the country, it lacks funding to carry out this expensive plan. In late 2003, it was housed in a small church office in Accra with an outdated phone number on its sign. The group has had a difficult time maintaining communication with its members, most of whom lack telephones and have difficulty accessing email because of poor training and rural location. With the help of a Canadian volunteer, GHANET established a Web site in late 2003 with basic information and a membership directory, although the Web site has not been updated in subsequent years. In 2003, the group decided to discontinue print mailings and to communicate only via email, a cost-effective move that could isolate its technologically illiterate members. The ambiguous role GHANET plays in speaking for its members further aggravates these problems. At a 2003 monthly meeting, the group’s chair-

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person chastised members for speaking to the press about GAC corruption. Since the discussion with the press resulted in a published news article that cited a GHANET source, GAC then expressed displeasure to the GHANET chairperson for his lack of control over members.46 In addition, we received a stern warning after contacting some GHANET members without the organization’s prior permission, whereas other members warmly invited contact without endorsement. These incidents raise questions about whether GHANET must speak on behalf of its members, or whether members can speak for themselves. They also raise questions about the hierarchical nature of GHANET and the ability of members to fully shape the priorities and direction of the organization. Because of their lack of resources, groups such as GHANET have the potential to become driven by their leaders’ personalities. GHANET has only one paid staff member and thus must rely on volunteers for its leadership. A very limited number of members can financially afford to take on timeconsuming leadership roles. The chairperson, for example, has to live in Accra, where the office is located, and must be available for full-time work, as the position demands. Because the chairperson is unpaid, there is also notable pressure to undertake income-generating activities such as attending conferences that provide stipends that exceed attendance costs. This is not unique to GHANET; the aforementioned STAIDS also uses workshop funding as a means of generating income for members and for the organization.47 This practice may mean, however, that the leadership spends more time at conferences than running the organization. To be successful, leaders of groups such as GHANET also must develop extensive networks of contacts with NGOs, GAC, and international donors. Although regular elections to rotate leaders could foster intragroup accountability and democracy, they also could damage these highly personal networks. Despite the meaningful representation that GHANET provides, most NGOs in Ghana remain unrepresented in AIDS policymaking and lack the benefits of GHANET membership. Unfortunately, the most vulnerable, underfunded, rural organizations are those least likely to belong to GHANET. Difficulty in paying fees, attending meetings, and traveling to workshops has prohibited participation of potential members, and GHANET’s communication, representation, and personalization issues have complicated collaboration among its current members. Groups without enough money for membership have even fewer opportunities to receive essential funding from GAC. Umbrella organizations such as GHANET that are intended to represent the views of all AIDS organizations may be hampered by their urban focus, their lack of infrastructure, the personalization of power, and their limited membership. In Ghana, this has meant that few AIDS NGOs receive the benefits that GHANET was created to provide.

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Exclusion of AIDS NGOs from Decisionmaking Institutions A second problem that AIDS NGOs face in Ghana is that few of them work with the aforementioned policymaking bodies of GAC, the CCM, and UNAIDS. Of GAC’s forty members, only two are indigenous AIDS NGOs: GHANET and the Wisdom Association, a group that supports people living with HIV/AIDS. Similarly, of the forty-one CCM members, thirteen are from government and thirteen are from international donors, whereas six represent NGOs or CBOs, four are from the private sector or professional associations, three are from the education sector, one is from a religious group, and only one represents people living with HIV/AIDS.48 Both GAC and the CCM involve a range of larger organizations to implement policy, such as trade unions and professional associations, but indigenous AIDS NGOs are largely excluded from this role. The lack of representation of AIDS NGOs is distressing for two reasons. First, without the input of these nonstate actors, continuity in AIDS policy could suffer because of turnover on GAC. Because ministers make up the majority of GAC, elections have the potential to devastate the commission’s institutional memory. Even though the NPP was reelected in 2004, because alternation in party control of government is possible in Ghana, a future cabinet shuffle could result in dozens of new commission members with little knowledge or experience on AIDS. The GAC secretariat had no transition plan and did not make any preparations for a change in government before the 2004 election.49 In a broader sense, because of their daily experiences with the disease and their continuous interaction with people living with HIV/AIDS, AIDS NGOs provide an essential voice to any AIDS policymaking institution. Although partisanship, resource competition, and bureaucratic turf wars may distract government officials, AIDS NGOs bring a continuous call for attention to AIDS. Without their presence, this perspective may be lost. Second, the lack of NGO representation, and particularly representation of people living with HIV/AIDS, may harm Ghana’s overall AIDS policies. Mobilizing people living with HIV/AIDS can address the stigma that accompanies AIDS and that prevents individuals from being tested for HIV. Additionally, incorporation of people living with HIV/AIDS into decisionmaking exposes an organization to the unique perspectives of individuals with the disease; people living with HIV/AIDS often provide needed emotional and practical support to those engaged in prevention and education activities.50 The largest of these organizations representing people living with HIV/AIDS on GAC, the CCM, and UNAIDS is the Wisdom Association. Centered in Accra, this group of volunteers provided care and support through nutrition programs and counseling for 1,500 people living with HIV/AIDS in 2003. Wisdom receives most of its funding from the GARFUND, with additional support from the United Nations Development Program.51

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GAC and UNAIDS are quick to display their cooperation with Wisdom as a means to gain legitimacy for incorporating people living with HIV/AIDS into decisionmaking. As of 2003, these two associations also received a disproportionate amount of attention from other international donors. GHANET and Wisdom are considered to be representatives of AIDS NGOs and people living with HIV/AIDS respectively. Attention to the two groups may exclude the involvement of other organizations in decisionmaking. As noted earlier, GHANET represents only a fraction of the country’s many AIDS NGOs, and even fewer groups are involved in its leadership. Furthermore, since these two groups benefit from the all-but-guaranteed support of donors, they have little motivation to challenge donor policies or to upset the status quo. At the same time, groups critical of current AIDS policies and programs face exclusion from decisionmaking bodies. The most vocal of these organizations is GATAG, which advocates for affordable access to ARVs on behalf of people living with HIV/AIDS in Ghana. Headquartered in a small office near Accra, GATAG receives no money from the GARFUND or international donors and must rely on the contributions of its members and leadership to continue operations. GATAG does not sit on any national bodies and is ignored by GAC, UNAIDS, and the CCM, though it has tried to establish partnerships with these organizations. Its members have been unable to receive visas to attend many international conferences, a result, they claim, of being blacklisted by GAC, which is routinely contacted in the visa-application process. GATAG’s president asserted that because of the group’s focus on treatment to control HIV/AIDS, something the government has been slow to provide, GATAG has been excluded from the group of voices GAC chooses to hear.52 Instead, the government has partnered with Wisdom, which has focused its advocacy on care and support efforts for people living with HIV/AIDS.53 Despite this special attention, Wisdom is like other NGOs in that it suffers from the same structural inefficiencies that exist with the GAC funding process. After a three-month application process, if a GARFUND grant is approved, the grant money is channeled through a long stream of accounts. First, GAC alerts the Ministry of Finance of its approval of a project. After the accountant general approves the transaction, funds are transferred to the head office of the NGO’s bank. From there, money is transferred to the local branch of the NGO’s bank and is deposited in the organization’s account. In 2003, this entire process had to be repeated three times for each applicant since GARFUND grants were distributed in three tranches with a financial report for each tranche needed.54 These delays could postpone an NGO’s project by months. In the case of Wisdom, these delays hurt the group’s food distribution program. In 2003, Wisdom had about 600 members in Accra, 250 of whom were actively involved with its programs. When funding for food was available, this number doubled to 500 active members. Yet because of the unreliability of GARFUND money, Wisdom often was unable to retain its members’ interest.55

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A similar problem has occurred at Media Response, a small NGO in Accra that publishes a monthly newspaper that chronicles projects and organizations that work on HIV/AIDS. Because of the inefficient GAC bureaucracy, Media Response has lost regular readers and contributors. The president explained that the group received its first tranche of funding six weeks late and its second tranche fifteen weeks late. At the time when the group should have received the third tranche of funding, it had only recently received the second. These delays prevented timely publication of the organization’s paper.56 Though the delays are somewhat understandable given Ghana’s underdeveloped banking infrastructure, GAC gives applicants little information on the progress of their grants or the reasons for the delays, prompting legitimate concerns on the part of these organizations. Speaking about this banking delay, one NGO leader pointed out that without more information about the process for dispersing money, organizations begin to wonder if their funding has been purposely detained because they have not paid the necessary government official to expedite the process.57 The lack of transparency in the GARFUND process and the limited state capacity to address these banking inefficiencies increase NGO distrust of the state. An additional factor that affects national and international AIDS institutions in Ghana is the fact that these bodies both make policy and allocate money to groups to implement that policy. Because GAC plays this dual role, it is difficult for organizations that receive funding to be critical of the government. For example, because Media Response receives most of its funding from GAC, it is hesitant to oppose government policies in its monthly newspaper. The president explained: “Well, at most, I really tread cautiously; I still go ahead and publish, but I make sure that it is quite balanced, not necessarily against the GAC.”58 This section has illustrated how the structures of AIDS policymaking in Ghana have tended to exclude most AIDS NGOs. This has been particularly true for AIDS NGOs such as GATAG that challenge state and donor policies on ARV treatment. Because select AIDS NGOs such as GHANET and Wisdom are represented on decisionmaking bodies, they are less likely to question state policies. (This fact is often true for organizations that receive grants from GAC.) The inefficiencies within the GARFUND grant dispersal process raise questions about accountability and transparency in the allocation of funding for NGOs. A final point is that limited representation of a wide variety of AIDS NGOs on these institutions may hamper the ability of these structures to develop sustainable, effective AIDS programs.

AIDS NGOs and the Social and Political Environment The third variable that shapes how (or if) AIDS NGOs can affect Ghana’s AIDS policies is the country’s larger political and social environment. Despite

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the 2000 and 2004 elections and Ghana’s relatively free society, civil society remains underdeveloped, with most citizen involvement concentrated in religious groups. Although 57 percent of survey respondents in 2005 described themselves as active members of a religious association, only between 10 and 20 percent reported membership in a professional or business association, trade union, farmers’ group, or community development organization.59 Discomfort with expressing political views after many years of authoritarian rule and concern about meeting immediate material needs may contribute to this low participation. Although some associations have created social capital that bonds members with similar social characteristics together, few organizations have built bridges across religious, regional, ethnic, or class lines to address broad societal challenges.60 Yet AIDS is an issue that cuts across societal cleavages and requires cooperation among people often with little else in common but their sero-status. Africa’s most successful AIDS activist group, South Africa’s Treatment Action Campaign, has illustrated the importance of building ties across social divides.61 In a country such as Ghana, with an underdeveloped civil society, the formation of AIDS NGOs is problematic. Additionally, AIDS NGOs are marginalized by the fact that relatively few Ghanaians have a personal stake in AIDS policies. In 2005, only 16 percent of Ghanaians reported knowing a single relative or friend who had died of the disease. Although 40 percent of survey respondents said that government should spend more money to control the spread of HIV, 55 percent said that the country faces many other pressing problems that first need to be addressed. In particular, citizens prioritized job creation, education, economic management, and infrastructure improvement. 62 Low public support for AIDS programs “betrays evidence of a growing discomfort, among sections of the Ghanaian population, with the culturally inappropriate character of the public commentary on AIDS.”63 Without a personal stake in the issue, with other pressing concerns, and with uneasiness about AIDS prevention messages, citizens may be less likely to join or even support AIDS NGOs. Statements from the GATAG president reflect this social environment. He described the organization: “We are advocates; we didn’t want to use the word ‘activist’ because in Ghana we are, by our nature, we are not an aggressive people.”64 Although the group has hundreds of people living with HIV/AIDS as members, it does not engage in political activism. In 2002, GATAG lobbied Coca-Cola to provide access to treatment for its Ghanaian bottling workers. After GATAG threatened to launch a protest march, one of its executives was detained by the police until pressure from treatment activists around the world secured his release. Instead of pushing ahead with its protest against Coca-Cola, GATAG then called off its march: “The day the pressure came on, as I said, the secretary was under big threat from the police . . . but at the end of the day, we decided to call it off, because we realized that if we should have made any move, it would have cost some people their life, those who may not understand much about it. And so we went in for a press

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conference.”65 Thus, even this group that is excluded from government forums and funding does not display radical opposition to harmful policies and obeyed government orders to end its protest. Although it has chosen to use more conventional means to influence policymaking, GATAG’s criticism of the government’s treatment policies appears to be legitimate. Despite numerous plans, the government has repeatedly failed to provide adequate ARV treatment to its people. The first budget for ARV drugs emerged in 2001, when the minister of health outlined a $45 million AIDS plan that included $30 million for ARVs.66 The administration initially investigated importing generic ARVs but abandoned its plan under pressure from GlaxoSmithKline.67 Though the government announced in 2002 that it would start production of three off-patent ARVs in 2003, it then abandoned the idea to work through the United Nations to obtain cheap drugs.68 Through 2004, the only treatment program in Ghana was a USAIDfunded Family Health International project, in which fewer than 200 individuals received drugs at a reduced cost.69 In 2005, a long-awaited national treatment program funded by the GFATM and managed by the NACP, a unit of Ghana’s Ministry of Health, began providing drugs to approximately 1,300 individuals, using imported patented drugs. In the same year, the government reversed its earlier decision and engaged a domestic pharmaceutical company to produce generic ARVs. In 2006, Ghana’s CCM secured an additional $97 million for a five-year program to scale up treatment access at fifteen hospitals; the plan is to provide 35,000 individuals with ARVs by 2010. Treatment access will be coordinated through the NACP, which will distribute funding and medication to both government and private hospitals.70 Despite these plans, a clear role remains for political activism, as Ghana continues to stumble in providing consistent, reliable treatment access for all people living with HIV/AIDS. Basic services, such as viral load tests, remain unavailable at most treatment centers in Ghana, and treatment sites are still limited to urban areas.71 Even Ghana’s limited supply of ARV drugs proved unreliable in late 2005, as imported pharmaceuticals did not meet health standards and had to be replaced, causing a temporary shortage of drugs.72 Petty corruption at local clinics has also been noted, and some doctors have reportedly refused to provide free government CD4 tests, forcing patients to attend costly private clinics.73 Although many of its HIV-positive members are not receiving ARV therapy, Wisdom Association has not directly confronted the state on the treatment issue. Instead, it has teamed up with the Coalition for Free and Universal Access to Antiretroviral Treatment, a group formed in 2005. GHANET, the official representative of AIDS NGOs on national policymaking bodies, has not demanded treatment access. Instead, groups such as GATAG that lack resources and political connections have emerged to advocate for treatment.

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Yet their organizational weakness and limited links to political networks may harm their legitimacy. For example, on the one hand, the Coalition for Free and Universal Treatment provided a needed voice in criticizing the government shortage of ARVs in 2005. On the other hand, it seemed to lose legitimacy when it challenged the NACP, the Ministry of Health, and the Ghana Food and Drug Board to take seriously research by a Ghanaian lab that showed the efficacy of using goat serum to neutralize the effects of HIV.74 Without strong leadership from NGOs that have links to official decisionmaking bodies, such jumbled messages about treatment are more likely to occur. The current Ghanaian social and political environment does not seem conducive to making HIV/AIDS a top political priority. Yet the experiences of the United States and South Africa illustrate the importance of politicizing the disease for the development of AIDS policies. For example, lobbying by the National Organizations Responding to AIDS pushed the US Congress to pass the 1990 Ryan White CARE Act.75 In South Africa, pressure from the Treatment Action Campaign and the Congress of South African Trade Unions caused the government to announce on November 19, 2003, that it would provide ARVs to 1.5 million people living with HIV/AIDS within a year.76 (By October 2006, only 200,000 South Africans—approximately one-fourth of those needing ARVs—were receiving treatment.77) Placing HIV/AIDS high on Ghana’s political agenda may be essential to continued success in containing the disease, particularly in the long term. Overcoming political apathy, by starting a dialogue between political groups and candidates, can heighten interest in the disease and foster societal engagement around the issue. As a representative from DFID stated: “Politics and HIV/AIDS is not necessarily a bad thing. I mean, Uganda’s success has been primarily because Museveni politicized HIV/AIDS. And we are actually looking for more politicization of HIV/AIDS so that it becomes one of the big things that every political organization talks about in their bid to win power in Ghana.”78 To this end, it appears that international donors are willing to sacrifice NGO representation to involve the top government leadership in HIV/AIDS policymaking. The official from DFID asserted that having high-level leadership on GAC for four years is preferable to putting NGO representatives on the commission who are acceptable to both main parties but who lack any political clout to make AIDS a priority.79 Yet there is a trade-off with trying to politicize AIDS through high-level government structures that are controlled by politicians: Ghana’s NGO community may be inadvertently silenced. To summarize, the larger context in which AIDS NGOs operate influences their ability to shape government policies. Particularly, civil society remains underdeveloped in Ghana, with most citizens participating in religious organizations rather than political, trade, or voluntary groups. The fact that AIDS has yet to impact many citizens hampers AIDS NGOs in their

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efforts to gain members. Finally, since AIDS has yet to become a political issue in Ghana, AIDS NGOs have had difficulty gaining political clout. Yet the structures that international donors have advocated to politicize the disease may marginalize the influence of AIDS NGOs over time.

Lessons from Ghana About NGOs and AIDS Policies NGOs that are specifically focused on AIDS have been relatively absent from policymaking in Ghana. Groups that concentrate on AIDS have tended to lack funding, being forced either to utilize personal resources or connections or to negotiate the complex process of applying to GAC. There is also a lack of coordination among Ghana’s thousands of AIDS NGOs, with only 150 of them represented by GHANET on GAC, the CCM, and UNAIDS. The AIDS organizations that have ties to state and donor-funded decisionmaking bodies tend to reinforce the policies of donors and the state, rather than challenge them. And although there are thousands of village, faith-based, and kinship groups addressing AIDS in Ghana on a daily basis, they tend to lack a strong voice in policymaking and resource allocation. In a country where few people have been directly affected by AIDS, it has been difficult to mobilize individuals to join AIDS organizations. Indeed, the issue of HIV/AIDS in Ghana has remained relatively underpoliticized. Though Ghana is only one country, we believe that this case study demonstrates several problematic aspects of involving NGOs in AIDS policymaking that may be generalized to other African countries. First, Ghana illustrates that NGOs that are institutionalized into the policy process may be able to gain benefits for their members. These benefits may come, however, at the expense of challenging state and donor actions. GHANET and Wisdom are incorporated into decisionmaking on AIDS. GHANET has received GARFUND moneys to distribute to its members, and Wisdom has money from UN agencies and the GARFUND for its care and support programs, but these organizations have a difficult time being independent voices in the AIDS policy process. GHANET has not challenged the government’s policies on treatment, and neither group has sought to encourage more explicit AIDS prevention programs. In contrast, organizations such as GATAG that have tried to raise new issues about AIDS have been marginalized, even to the point of being singled out for state intimidation. If NGOs are to shape state and donor policies on AIDS, they must strike a balance between working closely with established institutions and assertively challenging the status quo. Another problematic aspect of AIDS NGOs is that they, more than any civil society organization, are directly impacted by AIDS. Although this makes their members passionate about the issue, it may also harm their longterm viability. When members and leaders die of AIDS, programmatic conti-

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nuity and institutional memory are harmed. Furthermore, the emotional anguish of those left behind can hurt the organization. The painful and lengthy process of watching a group member die of AIDS can harm organizational morale and detract from achieving the organization’s larger goals.80 The stigma attached to HIV/AIDS makes it more difficult for AIDS organizations to develop. It is no coincidence that so few of the estimated 400,000 HIV-positive Ghanaians are involved in some type of AIDS organization.81 Yet it is precisely through involving people living with HIV/AIDS in all types of organizations that the stigma, and in turn the epidemic, can be addressed. As UNAIDS asserts, “[stigma and discrimination] constitute one of the greatest barriers to preventing further infections, providing adequate care, support, and treatment, and alleviating the epidemic’s impact.”82 Finally, the Ghana case illustrates the difficulty of mobilizing the poorest and most marginalized members of society to influence AIDS policies. GHANET communicates with members via email, a media that directly excludes rural citizens and those without an education. The leadership of Wisdom is urban based and educated. Even small associations such as STAIDS are more likely to emerge among urban, educated individuals than among the rural, isolated poor. The GARFUND process hampers those without skills, education, knowledge, or connections. The complexities of writing an acceptable proposal and understanding the resulting chain of financial transactions may exclude many citizens. Thus, there are few rural AIDS groups, organizations of youth and children fighting AIDS, or women’s associations devoted solely to AIDS. Yet the people who are not incorporated into associations or who cannot easily access resources are also the individuals most vulnerable to HIV infection. For example, in 2005, women were almost 60 percent of all people living with HIV/AIDS in sub-Saharan Africa, and millions of children are infected and affected by AIDS.83 For NGOs to be effective and legitimate players in the fight against AIDS in Ghana, and throughout sub-Saharan Africa, they must better incorporate these most vulnerable groups into their organizations and value their input in decisionmaking.

Notes The Calvin College McGregor Fellowship Program provided funding for this research. 1. Michael Bratton, “Civil Society and Political Transitions,” in Civil Society and the State in Africa, ed. John Harbeson, Donald Rothchild, and Naomi Chazan, 55–56 (Boulder, CO: Lynne Rienner Publishers, 1994). 2. UNAIDS, Report on the Global AIDS Epidemic 2006, 506. Available at http:// data.unaids.org/pub/GlobalReport/2006/2006_GR_ANN2_en.pdf (accessed June 6, 2006). 3. Ghana AIDS Commission, “2004 HIV Sentinel Survey Report.” Available at http://www.ghanaids.gov.gh/main/statistics.asp (accessed May 29, 2006).

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4. UNAIDS, “Ghana: Epidemiological Fact Sheets 2004 Update.” Available at http://www.unaids.org (accessed May 29, 2006). 5. Richard Sandbrook and Jay Oelbaum, “Reforming Dysfunctional Institutions Through Democratization? Reflections on Ghana,” Journal of Modern African Studies 35, no. 4 (1997): 603–646. 6. E. Gyimah-Boadi, “A Peaceful Turnover in Ghana,” Journal of Democracy 12, no. 2 (2001): 103–117; Daniel Smith, “Consolidating Democracy? The Structural Underpinnings of Ghana’s 2000 Elections,” Journal of Modern African Studies 40, no. 2 (2002): 621–650. 7. “Ghana’s ‘Gentle Giant’ Re-elected,” BBC News, December 10, 2004. Available at http://newsvote.bbc.co.uk/mpapps/pagetools/print/news.bbc.co.uk/2/hi/africa/ 4077835.stm. 8. Using Freedom House’s scale of 1 to 7, with 1 being the “most free,” Ghana had a rating of 1 for political rights and 2 for civil liberties in 2006. Ghana had improved its rankings in both areas since 2003. Freedom House, “Freedom in the World 2006: Table of Independent Countries Measures of Comparative Freedom.” Available at http://www.freedomhouse.org/uploads/pdf/Charts2006.pdf (accessed June 6, 2006). 9. Thomas Zweifel and Patricio Navia, “Democracy, Dictatorship, and Infant Mortality,” Journal of Democracy 11, no. 2 (2000): 99–114. 10. Adam Przeworski and Fernando Limongi, “Political Regimes and Economic Growth,” Journal of Economic Perspectives 7, no. 3 (1993): 51–69. 11. Patricia Siplon, AIDS and the Policy Struggle in the United States (Washington, DC: Georgetown University Press, 2002), 55–58. 12. Naomi Chazan, “Africa’s Democratic Challenge,” World Policy Journal 9, no. 2 (1993): 280–311. 13. Nicolas van de Walle, African Economies and the Politics of Permanent Crisis, 1979–1999 (New York: Cambridge University Press, 2001), 26–27. 14. Amy S. Patterson, “A Reappraisal of Democracy in Civil Society: Evidence from Rural Senegal,” Journal of Modern African Studies 36, no. 3 (1998): 423–441; Robert Fatton, “Africa in the Age of Democratization: The Civic Limitations of Civil Society,” African Studies Review 38, no. 2 (1995): 67–110; Patrick Chabal and JeanPascal Daloz, Africa Works: Disorder as Political Instrument (Bloomington: Indiana University Press, 1999), 20. 15. For an illustration of these points in AIDS NGOs, see Jake Batsell, “AIDS, Politics, and NGOs in Zimbabwe,” in The African State and the AIDS Crisis, ed. Amy S. Patterson, 50–77 (Aldershot, England: Ashgate Publishers, 2005). 16. Stephen Ndegwa, The Two Faces of Civil Society: NGOs and Politics in Africa (West Hartford, CT: Kumarian Press, 1996), 1–2, 112. 17. Joviah Musinguzi, “13th ICASA: GIPA—Is It a Reality, an Empty Promise.” Available at http://archives.healthdev.net/af-aids/threads.html (accessed August 1, 2003). 18. Ryann Manning, “The Impact of HIV/AIDS on Civil Society: Assessing and Mitigating Impact,” Report for Health Economics and HIV/AIDS Research Division, University of Natal, Durban. Available at http://www.und.ac.za/und/heard (accessed August 12, 2003). 19. For more on the stages of the AIDS epidemic, see Tony Barnett and Alan Whiteside, AIDS in the Twenty-First Century: Disease and Globalization (New York: Palgrave Macmillan, 2002), 47–48. 20. Ghana AIDS Commission, “Annual Report.” Available at http://www .ghanaids.gov/gh/about/annualreport.asp?subnav=annualreport (accessed September

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29, 2003); Ghana Ministry of Health, HIV/AIDS in Ghana: Background, Projections, Impacts, Interventions, and Policy (Accra: Government of Ghana, 2001); Ghana National AIDS/STDs Control Program, Draft for National HIV/AIDS and STI Policy (Accra: Government of Ghana, 2000). 21. UNAIDS, “The Three Ones.” Available at http://www.unaids.org/en/ Coordination/Initiatives/three_ones.asp (accessed June 3, 2006). 22. Warren Naamara (country coordinator, UNAIDS), interview by Bernard Haven, November 12, 2003, Accra, Ghana. 23. Ghana National AIDS/STDs Control Program, Draft for National HIV/AIDS and STI Policy; Ghana Ministry of Health, HIV/AIDS in Ghana. 24. World Bank, “Project Appraisal Document on a Proposed Credit in the Amount of SDR19.6 Million to the Republic of Ghana for a AIDS Response Project (GARFUND)” (unpublished report, Accra, Ghana, December 8, 2000). 25. Abedi Boafo (director of administration, GAC), interview by Bernard Haven, November 11, 2003, Accra, Ghana. 26. “Ghanaians Assess President’s State of the Union Speech,” February 15, 2001. Available at http://allafrica.com. 27. The Okyehene is the king of the Akyem people, who traditionally inhabit the Eastern Region. “The Fight Against HIV/AIDS: Annan, Okyehene in Battle Gears,” Ghanaian Chronicle, December 5, 2001. Available at http://www.ghanaian-chronicle .com. “Queenmums Must Support Aids Victims—Mother Theresa,” Ghanaian Chronicle, March 31, 2003. Available at http://ghanaian-chronicle.com. 28. “Ghana’s AIDS Commission Says HIV Test Not Mandatory,” PanAfrican News Agency, July 29, 2002. Available at http://allafrica.com. 29. Isaac Essel, “Do Not Worry About Crusade on Condom Use—Churches Told,” Accra Mail, June 10, 2003. Available at http://allafrica.com. 30. Global Fund to Fight AIDS, Tuberculosis, and Malaria, “Grant Performance Report.” Available at http://www.theglobalfund.org/search/docs/5GHNH_1026_0_gpr .pdf (accessed June 3, 2006). 31. United States Agency for International Development, “Ghana Budget Justification, 2003.” Available at http://www.usaid.gov/policy/budget/dbj2004/subsaharan_africa/Ghana.pdf (accessed October 15, 2003). 32. Eddie Donton (director, West Africa AIDS Foundation), interview by Bernard Haven, October 8, 2003, Accra, Ghana. 33. Eileen Murray (senior operations officer, World Bank Ghana), interview by Bernard Haven, October 8, 2003, Accra, Ghana. 34. Sam Anyimadu-Amaning (chairperson, GHANET), interview by Bernard Haven, November 14, 2003, Accra, Ghana. 35. HIV Treatment and Management Advocacy Project, “Low Level of Advocacy in/for HIV Treatment Therapy in Ghana Acknowledged” (report by the Centre for AIDS Information Network, Takoradi, Ghana, May 13, 2006). 36. Rev. Fiifi Khan Agtarkwah (executive director, Multiple Motivation Foundation), interview by Bernard Haven, December 1, 2003, Accra, Ghana. 37. Ann Swidler, “Syncretism and Subversion in AIDS Governance: How Locals Cope with Global Demands,” International Affairs 82, no. 2 (2006): 270–271. 38. United Nations General Assembly, “Declaration of Commitment on HIV/ AIDS: Five Years Later,” Report of the Secretary-General, March 24, 2006, 6. Available at http://data.unaids.org/pub/Report/2006/20060321_SGReport_GA_A60736_en .pdf (accessed May 27, 2006). 39. Amy S. Patterson, The Politics of AIDS in Africa (Boulder, CO: Lynne Rienner Publishers, 2006), 146–147, 152–154.

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40. Sam Anyimadu-Amaning, interview. 41. Theodora Obeng-Asamoa (coordinator, STAIDS), interview by Bernard Haven, September 22, 2003, Accra, Ghana. 42. Sam Anyimadu-Amaning, interview. 43. Ibid. 44. Ibid. 45. GHANET monthly meeting, attended by Bernard Haven, November 28, 2003, Accra, Ghana. 46. Ibid. 47. Theodora Obeng-Asamoa, interview. 48. Ghana Country Coordinating Mechanism, “CCM—Country Coordinating Mechanism.” Available at http://www.theglobalfund.org/programs/CCMMembers .aspx?CountryId=GHN&lang=en (accessed June 4, 2006). 49. Abedi Boafo, interview. 50. UNAIDS, “From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS.” Available at http://www.unaids.org/publictions/ documents/persons/una9943e.pdf (accessed January 20, 2004). 51. Harruna Sanusi (administrative manager, Wisdom Association), interview by Bernard Haven, December 8, 2003, Accra, Ghana. 52. Israel Asamoah (president, GATAG), interview by Bernard Haven, November 19, 2003, Accra, Ghana; Julius Amoako Bekoe (project coordinator, GATAG), phone interview by Bernard Haven, May 27, 2006, Accra, Ghana. 53. Israel Asamoah, interview. 54. Abedi Boafo, interview. 55. Harruna Sanusi, interview. 56. Samuel Dodoo (president, Media Response), interview by Bernard Haven, December 12, 2003, Accra, Ghana. 57. Rev. Fiifi Khan Agtarkwah, interview. 58. Samuel Dodoo, interview. 59. The percentage depended on the type of organization. Edom Selormey, Joseph Asunka, and Daniel Armah-Attoh, “Ghana 2005 Summary of Results,” Afrobarometer Project Report, 11–13. Available at http://www.afrobarometer.org/ghana.htm (accessed June 3, 2006). 60. Michael Bratton, Peter Lewis, and E. Gyimah-Boadi, “Constituencies for Reform in Ghana,” Journal of Modern African Studies 39, no. 2 (2001): 231–259. 61. Steven Friedman and Shauna Mottiar, “A Moral to the Tale: The Treatment Action Campaign and the Politics of HIV/AIDS” (paper for the Centre for Policy Studies, Durban, University of KwaZulu-Natal, 2004), 5–9. 62. Selormey, Asunka, and Armah-Attoh, “Ghana 2005 Summary of Results,” 34–39, 56. 63. E. Gyimah-Boadi and Kwabena Amoah Awuah Mensah, “The Growth of Democracy in Ghana Despite Economic Dissatisfaction: A Power Alternation Bonus?” Afrobarometer Paper no. 28, vi. Available at http://www.afrobarometer.org (accessed July 15, 2003). 64. Israel Asamoah, interview. 65. Ibid. 66. “Health Official Outlines Strategic Plan to Combat HIV/AIDS,” BBC Worldwide Monitoring, June 26, 2001. Available at http://allafrica.com. 67. Caroline Thomas, “Trade Policy and the Politics of Access to Drugs,” Third World Quarterly 23, no. 2 (2002): 251–264; “Glaxo Withdraws Charge,” India Business Insight, April 24, 2001. Available at http://financialtimes.net.

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68. “Government Drops Production of HIV/Aids Drugs for an Order,” UN Integrated Regional Information Networks, July 6, 2003. Available at http://allafrica.com. 69. Dr. Phyllis Antwi (project manager, Family Health International), interview by Bernard Haven, October 6, 2003, Accra, Ghana. 70. Global Fund to Fight AIDS, Tuberculosis, and Malaria, “Grant Performance Report.” 71. Julius Amoako Bekoe, interview. 72. Kent Mensah, “Shortage of Antiretroviral Drugs in Ghana, Say Administrators,” Accra Mail, October 21, 2005. Available at http://web.lexis-nexis.com. 73. Julius Amoako Bekoe, interview. 74. Integrated Social Development Centre, “Do Not Trivialise Goat Serum Findings—UCAART,” press release. Available at http://www.isodec.org/gh/Papers/ UCAARTresponsetogoatserum.PDF (accessed June 6, 2006). 75. Siplon, AIDS and the Policy Struggle, 95. 76. “Drugs in Every District Within a Year,” Financial Times (South Africa), November 19, 2003. Available at http://web.lexis.nexis.com. 77. Craig Timberg, “In South Africa, a Dramatic Shift on AIDS,” Washington Post, October 27, 2006, A1. 78. Dr. Victor Bampoe (HIV/AIDS adviser/deputy health adviser, DFID Ghana), interview by Bernard Haven, December 8, 2003, Accra, Ghana. 79. Ibid. 80. Theodora Obeng-Asamoa, interview. 81. United States Agency for International Development, “Ghana Budget Justification, 2003.” 82. UNAIDS, “AIDS Epidemic Update: December 2003.” Available at http:// www.unaids.org (accessed December 1, 2003). 83. UNAIDS, Report on the Global AIDS Epidemic 2006, 505–506.

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5 Overcoming the Contradictions: Women, Autonomy, and AIDS in Tanzania Patricia D. Siplon and Kristin M. Novotny

The devastating effects of global HIV/AIDS, particularly as they are being experienced in sub-Saharan Africa, have become increasingly difficult for Westerners to ignore. That the pandemic is disproportionately destroying the lives of women and poor people (and that the overlap between these groups is not coincidental) is also increasingly widely acknowledged. But where do we go from this point of recognition? How should we address the multifaceted problems wrought by HIV/AIDS, particularly among people already struggling with severe resource deprivation and discrimination? This chapter seeks to examine the goals and solutions articulated by a group of African women facing exactly these circumstances. In conducting such an examination, the notion of autonomy plays a crucial role. Autonomy serves as a very useful framework for understanding the complex challenges facing poor women affected by HIV/AIDS, since it is a constituent element of the “power to” control one’s personal or community destiny discussed in Chapter 2 of this book. Diana T. Meyers, a feminist philosopher, has identified autonomy as “an individual living in harmony with his or her authentic self.”1 Our study shows that HIV-affected women in sub-Saharan Africa rarely achieve such harmony and consequently are unable to fully exercise control in their lives. Their overall lack of autonomy is largely owing to the social relationships in which they find themselves—particularly the unforgiving nexus of poverty, gender discrimination, and widowhood. At the same time, the disease of HIV/AIDS further undermines the amount of autonomy they are able to exercise. Still, the women in our study exhibit surprising resilience in the face of their circumstances and are taking small, measured but significant steps in the direction of autonomous action. Whether those steps will ultimately result in large-scale societal change is unclear; nevertheless, we hope to show that the

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women are motivated by an understanding of their own needs and authentic selves that society has hitherto ignored. The empirical analysis of this chapter is based primarily upon data obtained from interviews with thirteen HIV-positive widows in Tanzania. These women were recruited by the leadership of the group AIDS Widows of Tanzania (AWITA), and all are members of the organization. Almost all the interviews were conducted in Kiswahili, with a research assistant providing translation for one of the chapter’s authors. The interview format was altered at the request of those interviewed. Initially, the plan was to conduct a focus group interview, but this format was modified to also include individual interviews of the thirteen participants. As a result, each of the participants took part in an open-ended structured interview, followed by a focus group discussion that brought all participants together. In the sections that follow, we use pseudonyms in place of the real names of the women who agreed to be interviewed. In addition to the data gained from interviews, material was gathered through participant observation by one of the authors, who attended several AWITA meetings. The authors have also conducted an analysis of AWITA’s statement of goals and objectives. The women interviewed ranged in age from 26 to 61, with an average age of 44. Although the women all currently live in or near Dar es Salaam, none of them was originally from this area. They came from around the country, in some cases because of marriage, economic, or treatment opportunities; southeastern Tanzania and Zanzibar were not represented, however. One woman came from South Africa. All but two women had been mothers. The number of children they had given birth to ranged from 2 to 10, with an average of 4.3 children born to each mother. Additionally, 5 of the 13 women volunteered information that they were also taking care of additional children orphaned by their husbands or other family members. The number of years that the women were in committed relationships (two had not been legally married and several considered themselves married before legalizing the union) ranged from 4 to 37 years, with an average of 15.7 years. One widow had been divorced and then widowed by a second partner. Periods of widowhood ranged from 1 to 10 years, with an average of 5.2. None had remarried after the death of the spouse they believe had infected them with HIV. The next section of the chapter examines the concept of autonomy, tracing its development in Western political thought. We are especially interested in more recent feminist theories of autonomy and briefly outline the features of Diana Meyers’ competency approach as most applicable to the case we are examining. The third section offers an overview of how HIV/AIDS has combined with already-existing gender discrimination and lack of autonomy to exacerbate the disproportionate burden of AIDS on women and girls. The

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fourth section then narrows our focus on the lives of the women of AWITA, all of whom are HIV-positive widows, and how they are working to create conditions of autonomy in their own lives despite the most unfavorable of circumstances. In the fifth section we argue that the case of the women of AWITA offers important challenges to some of our assumptions about autonomy, but that an incorporation of non-Western perspectives allows a more generalizable and useful conceptualization of autonomy to emerge. We conclude with suggestions designed to change our aid approaches on both a theoretical and a material level for some of the most heavily AIDS-impacted communities in the world.

What Autonomy Is and Why It Matters It is easy to understand why the concept of autonomy, which evokes a decidedly Western ethos of independence and self-sufficiency, might be seen as deeply problematic in a collectivist, multiethnic, multicultural region such as sub-Saharan Africa. This chapter will argue, however, that the concept of autonomy not only makes sense in sub-Saharan Africa but is crucial to understanding the lives of African women who live with HIV/AIDS as well as in beginning to fashion a political response to the pandemic. Primarily because of its Western philosophical baggage, the term autonomy is an unlikely prism through which to view the struggles of African women who raise children while coping with staggering poverty, widowhood, sexism, and the social stigma of an incurable, depleting illness. Yet the concept of autonomy at base refers to the quality of self-government; it is fundamentally about the ability to control one’s life. Situated in a non-Western context, the concept of autonomy can shed important light on African people living with HIV/AIDS: how HIV/AIDS affects a woman’s ability to be selfgoverning, to make her own decisions, to chart her life’s course. A Brief History of the Concept The most prominent and influential discussions of autonomy in Western philosophy have emphasized the quality of solitude; the autonomous person looks primarily to himself, stands on “his own two feet.” (Male pronouns are appropriate given the gendered history of Western philosophy.) The autonomous person has typically been characterized as looking inward, to his own reason, for rules about what he should do. The most influential proponent of this view was Immanuel Kant (1724–1804), whose moral and political theory was grounded in human rationality. Kant maintained that rational beings give themselves the laws of

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morality that emanate from reason. He derived the concept of autonomy from the ability of rational beings to self-legislate: “[W]hat else then can freedom of the will be but autonomy, that is, the property of the will to be a law to itself?”2 Because this capacity is “the basis of the dignity of human and of every rational nature,”3 autonomy renders human beings “above all value,” as entities that “admit of no equivalent.”4 Autonomy, for Kant, was the precondition for individual moral worth. Groups traditionally excluded from social and political power have, understandably, been drawn to elements of the Kantian doctrine. If moral worth is about what is inside of us rather than what people say about us, if rationality is the birthright of every living person, then we all have the ability and the right to govern ourselves. Those who happen to be consigned to the lowest rungs on the social ladder still need to be taken seriously as moral beings who are guided by their own lights—an argument frequently made by abolitionists and suffragists, including Frederick Douglass, Elizabeth Cady Stanton, and Mary Wollstonecraft. Indeed, the concept of self-sovereignty that is embedded in the concept of autonomy is among the highest aspirations of Western liberal thinking.5 More recent arguments on behalf of disenfranchised groups have pointed out limitations in the Kantian view of autonomy, however. Critics argue that the emphasis on individual reason as the site of autonomy betrays an overly individualistic conception of the self, one in which the individual “is disconnected from enduring attachments to others, avoids intimacy, and is essentially an egoistic or self-interested maximizer.”6 Indeed, one frequent theme is that mainstream accounts of autonomy ignore the social nature of the self.7 Instead of acknowledging that humans require relationships of dependency in order to become full adults and citizens,8 Kantian versions of autonomy posit self-reliant individuals as normative.9 In spite of these criticisms, the concept of autonomy is making a comeback in the writings of feminist scholars. Although multiple conceptions of autonomy exist, most feminist accounts agree that “the idea of self-determination or self-government . . . is taken to be the defining characteristic of free moral agents.”10 Catriona Mackenzie and Natalie Stoljar argued that “the notion of autonomy is vital to feminist attempts to understand oppression, subjection, and agency.”11 Linda Barclay similarly maintained that feminists “need and should cherish the capacity to decide and choose”12 that the concept of autonomy implies. Using slightly different wording, Tanzanian feminists speak of “self-reliance and power among the people” being achieved through a process whereby women and other disempowered groups increase their capacities to “analyze and know the world at all levels; act on their own behalf; and increase their power and control over the resources necessary for sustainable and dignified life.”13

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Diana T. Meyers and the Competency Approach to Autonomy This chapter uses Diana T. Meyers’ Self, Society, and Personal Choice (1989) to illuminate the relationship among women, AIDS, and autonomy in subSaharan Africa. As noted above, Meyers wrote that the core of personal autonomy is “an individual living in harmony with his or her authentic self.”14 What does it mean for someone to live in harmony with this authentic self and hence to be autonomous? Meyers argued that autonomous individuals engage, to greater or lesser degrees, in the practices of self-discovery, self-definition, and self-direction. In order to control my life, according to Meyers, I must be able to ascertain what I really want and act accordingly.15 The first step in attaining autonomy, then, is self-discovery.16 Clearly, introspection is an important part of this process: “Autonomous people must be disposed to consult their selves, and they must be equipped to do so. More specifically, they must be able to pose and answer the question ‘What do I really want, need, care about, value, et cetera?’”17 Once my needs, values, and concerns are identified, I must turn toward formulating a life plan. Meyers defined a life plan as “a conception of what a person wants to do in life.” A life plan is not a minute-by-minute itinerary of an entire life; it is always subject to revision and is also largely schematic: “Life plans provide some specific directions and a great deal of general guidance.”18 Life plans are also “relative to the resources of the individuals who adopt them,”19 so that goals—although challenging—should be ones that the individual can realistically hope to attain. According to Meyers, formulation of life plans is a necessary part of the self-definition that autonomy requires. After an individual has discovered what she really wants and has defined her goals, autonomy next requires self-direction. Simply stated, people must act on their life plans to confirm whether they are appropriate or inappropriate,20 and they “must be able to correct themselves when they get the answer wrong.”21 Meyers argued that autonomous people exhibit both resistance and resolve; they are able to resist unwanted pressure from others, and they show resolve by determining to act on their own judgments.22 Meyers’ ultimate goal was the development of autonomy competency— “the repertory of coordinated skills that makes self-discovery, self-definition, and self-direction possible.”23 When autonomy competency is exercised, selfgovernance is a reality; we control our lives by ascertaining what we really want and acting accordingly.24 Our authentic selves emerge.25 Furthermore, we create a stable base for self-respect through the exercise of autonomy skills.26 Under a Kantian view, autonomy is not construed as a skill; instead, it is a quality one either has or one lacks. This either/or construction of autonomy

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has been particularly problematic for individuals (such as women and other political minorities) who were thought to lack an innate ability to reason. Meyers, on the other hand, maintained that the skills that support autonomy admit of degrees. Some people may be more skilled in self-discovery than self-direction, so their degrees of autonomy will vary accordingly. In this way, autonomy is not seen as a quality that one wholly has or wholly lacks, with its attendant implications of personal success or failure. Meyers took pains to point out that lesser degrees of autonomy still imply the exercise of self-governance. In a 1987 article, Meyers wrote that “it must be possible for a life to contain pockets of autonomy and threads of autonomy which do not add up to an autonomous life.”27 If so, we can distinguish autonomous moments and autonomous decisions in the lives of people who might otherwise be characterized as lacking control over the basic direction of their lives.28 In doing so, we are forced to be more careful in our judgments of any social problem. Instead of remaining content with stereotypes (such as dependent/independent, powerful/powerless, self-sufficient/lazy) that obscure the relationship between material resources and autonomy skills, Meyers’ conception of autonomy forces us to confront the circumstances under which self-discovery, self-definition, and self-direction do and do not occur. Applying these concepts to Tanzania, we can look at the circumstances of an individual woman’s life to see why an AIDS widow may lack proficiency in certain skills or how her use of existing skills might be systematically blocked. Recall Meyers’ contention that “the life plans of autonomous people must be relative to the resources of the individuals who adopt them.”29 What kinds of life plans are likely to be adopted by women who, for example, lack education, family-supporting jobs, and adequate nutrition or health care; who have life-threatening illnesses; and who must take care of several minor children? They will not be able to develop the competencies that Meyers indicated are necessary for full autonomy,30 and hence their life plans may look similarly impoverished. In particular, those who suffer the ideological and material effects of social stratification “may be dissuaded from hoping for much of anything.”31 Yet later parts of this chapter also show the “threads of autonomy” that are woven daily by Tanzanian women in the direst, sparest of circumstances. Although this evidence of autonomy is hopeful, it is insufficient given the level of problems these women face. In the fourth section, we make policy recommendations in accordance with Meyers’ view that autonomy is not a state of being—it is an activity. Autonomy skills must be instilled, reinforced, and acted upon, because they atrophy with disuse.32 Tanzanian women who live with AIDS must be given the educational, legal, economic, and health care tools that will enable them to make their own decisions and work toward their own goals.

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A Gendered Perspective on AIDS in Tanzania AIDS in Tanzania has reached crisis proportions. As this section of the chapter seeks to illustrate, the magnitude of the crisis is intensified when we examine the disproportionately negative impacts that have been suffered by women and girls in Tanzania. Even before factoring in the negative effects of gender discrimination, it is clear that Tanzania as a whole is bearing a very heavy burden relating to HIV/AIDS. AIDS analysts have found that among and within regions and countries, poverty and HIV/AIDS prevalence are highly intertwined.33 Thus, it comes as no surprise that Tanzania, where only about half the population has a relatively safe source of water and only 11 percent of households have electricity, suffers from an adult HIV prevalence rate of around 7 percent.34 Additionally, in Tanzania 11 percent of children have been orphaned, a devastating problem whose dimensions have not improved in recent years.35 Tanzania, like many other developing countries, has submitted in the last two decades to structural adjustment programs imposed by international financial institutions. Among the requirements of these programs are decreased government expenditures on social services, including education and health care, and the imposition of user fees on these same services. The impact of these changes can be seen in the drastic decline in the ability of poor people to access these services. Recently, Tanzania has reinstituted a Universal Primary Education Policy. Under this policy, although primary school is nominally free, parents must pay for uniforms, books, and, in many areas where salaries are inadequate, “tutoring” by the public school teacher. The situation regarding secondary school remains dismal. Secondary school enrollment numbers taken from the HIV/AIDS Indicator Survey 2003–4 are appallingly low—in the single digits for both boys and girls.36 The problem is made worse by the fact that girls are forced to drop out at disproportionately higher rates, so that by Form 5 (equivalent to high school in the United States) only one girl is still in school for every three boys.37 As a result of these changes, “adult literacy rates have declined from Tanzania’s previous good record in the 1980s of 90 per cent to the current situation of 57 per cent for women and 80 per cent for men.”38 Given this environment of serious deprivation, the costs posed by AIDS will be felt most at the individual level. And the unequal status of women and girls within Tanzanian society virtually guarantees that the female gender will bear a disproportionate burden. In all aspects of HIV/AIDS, from levels of infections to treatment to the division of the labor created by the needs of the sick, women suffer disproportionately. From a power perspective, the situation is a vicious cycle. Lack of personal empowerment makes it very difficult for women and girls to demand equal access to diminishing resources or to resist demands on them made by more powerful members of their families

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and societies to take on additional work and other burdens. But this unequal treatment often has permanent consequences: it deprives them of future resources such as education and material goods and of opportunities such as time for organizing and skills building, thus making self-empowerment and autonomy still further out of reach. These burdens and problems are necessarily interrelated but will be considered individually below. In contrast to the situation in richer Western nations, women in Tanzania are more likely to be HIV-positive than men. This is true partly because of biological factors. The dominant mode of transmission in sub-Saharan Africa is heterosexual intercourse, and within this mode of transmission women are biologically more vulnerable to infection than men.39 It is possible that female genital mutilation heightens this vulnerability, and within Tanzania an estimated 18 percent of women and girls have undergone such procedures.40 Cultural and social factors also appear to be playing a strong role in the enhanced vulnerability of women and girls to HIV/AIDS; it is here that the intersection with gender-based discrimination becomes very clear. One of the clearest differences in rates of HIV exposure emerges when one compares statistics of HIV prevalence among young Tanzanian men and women. Whereas overall the adult prevalence among women is 8 percent, compared to 6 percent for men, the prevalence of HIV infection among young women is disproportionately higher than that of young men.41 For example, among those 20 to 24 years old, 6 percent of women are infected versus 4.2 percent of men, and these numbers increase to 9.4 percent for women and 6.8 percent for men for those 25–29 years old.42 The reason for this disparity is the sexual partnering that is occurring, which is in turn dictated by unequal power relationships based on gender and age. Bluntly speaking, young women with limited power over their own life choices are having sex with older men who can exercise power in the classic sense of being able to influence the actions of others. Although unemployment is a serious problem for the young of both genders, opportunities for income earning among young women are particularly limited. Thus, it is increasingly common for young women to use sex with older men as a survival strategy: to pay for school fees or basic needs such as food, clothing, and housing. Furthermore, the few income-generating opportunities open to unskilled young women who migrate to the city from rural areas, including work as domestic servants and bar attendants, often require sexual work either as a condition of keeping a job or as a means of supplementing inadequate income. In fact, the path from domestic work often leads into the even-riskier employment as a bar maid and to informal commercial sex work, when girls and young women, driven by overwork and exploitation, attempt to at least move to a potentially more lucrative means of self-support.43 The dilemma caused by attempting to gain economic autonomy through dependence on sex is not lost on advocates for gender equity: “Bar workers prefer their economic

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independence compared to the alternatives of an abusive marriage, dependence on elders, or being overworked in a village; but they are hardly ‘independent’ when they are unable to negotiate condom use with regular partners, even though some claim to demand this with casual partners.”44 The problem of women and girls’ increased risk for HIV infection stems partly from their low economic status and lack of financial opportunities. But these factors are themselves symptomatic of women’s low levels of power with respect to men, which are also manifested on a personal level in the dynamics of marriage, family activities, and sexual negotiations. Although Tanzania is an extremely diverse country with more than 100 ethnic tribes, patriarchy remains a strong unifying cultural link. Women are expected to marry and have children. But marriage is no protection against HIV. In fact, as Baylies pointed out, marriage can itself be a risk factor, especially among young women. The combination of youth and marriage is particularly dangerous for women, she noted, because of the social need to have children, the tendency of men to have most of their outside sexual partners in the early years of marriage, and the risk of male “straying” during the wife’s pregnancy or early postpartum period.45 Additionally, polygamy is commonly practiced along the coast and among certain groups, meaning that even within the confines of marriage, there may be more than one partner. The power imbalance within marriage and family relationships is unequal on several levels. Men have the ability to make decisions about their own life directions (albeit often within extremely constrained resource settings) as well as having enormous influence, and often coercive power, over the sexual, reproductive, and daily activity choices of their partners and children. Women, conversely, do not exercise power over their partners, in part because they lack control of household resources (bolstered by both customary and statutory law).46 The power imbalance within the domestic sphere is so entrenched that even self-identified AIDS advocacy organizations admit that they do not openly challenge it. For instance, WAMATA (Walio katika Mapambano ya AIDS, Tanzania [Those in the struggle against AIDS in Tanzania]), probably the best-known AIDS service organization in Tanzania, has acknowledged that it does not confront men’s behavior directly, disclose behavior of men that is putting women who cannot protect themselves at risk, or pursue men who have abandoned their children or left wives or partners infected.47 When HIV infection enters into a marriage or family, women and female children will suffer disproportionately, even in cases where they are not infected. Even before AIDS enters the picture, resource distribution schemes are weighted against females. This has been shown to be true for the most basic of resources, food.48 It is also true for educational opportunities and for expenditures on health care.49 The imposition of AIDS into an already-impoverished household means income will be decreased (when the sick person becomes incapable of working) at the same time that expenses will rise (when

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the sick person needs medicines, nutritious foods, and other items necessary for his care). When school fees can no longer be paid, it will be the girls who are taken out of school first, and it will be the women and girls who will disproportionately forgo food, medical services, and other goods and services that are no longer affordable. A further source of the heaviness of the burden for women and girls derives from a societal division of labor that places caregiving activities squarely on their shoulders. In a study looking at the home care experience of fifty-one patients in Mwanza, Tanzania, researchers found that only six were taken care of by a male member of the household and that these men “were forced into a care-giving situation as the only ones available.”50 Because it is easy to obscure the difficulty and misery of such work behind euphemistic descriptions, we note here some of the specific aspects of the work involved: Amongst the kind of problems they have to manage, cleaning and changing soiled bedding after excessive vomiting and diarrhea is particularly time consuming and tiresome. Some patients had diarrhea 15 to 20 times a day. Handling severe diarrhea was reported as one of the most difficult things to deal with, especially in situations where water for washing clothes has to be carried, often from a distance, and where bed linen is a luxury. At the terminal stage, caring for a patient becomes a full-time job for the care provider, so that she is unable to give time to any other activity.51

It is clear that women suffer disproportionately from AIDS both because they are more at risk for contracting HIV and because, even when they are not themselves infected, they are very likely to be the ones who are forced to make do with less—whether it is education, food, or health care. They are also the ones expected to carry on the additional work (especially child care and nursing) imposed by HIV-related illness and death. All of these consequences of HIV also have severe power ramifications, ensuring that, through the deprivation of resources and opportunities, the goals of self-empowerment and autonomy are rendered more unattainable. In the next section we move from the general conditions of AIDS in Tanzania to the specific, looking at the circumstances of a particular group of women, all of whom are infected and affected by HIV. These HIV-positive widows living in Dar es Salaam have banded together to form AWITA to collectively address the problems created in their lives by HIV/AIDS.

Voices of Suffering, Voices of Hope “As women we are facing serious inequalities, as widows we are facing serious problems and as [people living with HIV/AIDS] we are facing serious barriers.

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Therefore, it is important that AWITA become an autonomous group because as women widows living with HIV/AIDS, our problems are unique.”52 Sexism As noted above, Tanzanian women live in a culture of male domination. This fact is reflected in the comments of the women of AWITA during our interviews with the thirteen participants: What is killing most women is men’s silence. Men won’t use condoms in marriage, and won’t disclose the status of other sex partners who have died. There is a general perception in Africa that if the man dies first, the woman must have brought the HIV into the marriage. (If a woman dies first, no one assumes the opposite, though.) This perception must change—the one who survives did not necessarily infect the one who died. Most groups of [people living with HIV/AIDS] are mainly women because men won’t disclose their HIV status (including to their wives). Also, lack of sexual power keeps women from rejecting sex—if they reject sex, their husband assumes they have another partner.

In its Statement of Objectives, AWITA wrote that women face “serious inequalities in Tanzania in terms of accessibility of education, health care, and property ownership. These inequalities are also manifested in our social structures and legislatures. Women are denied their fundamental rights by virtue of their gender.”53 Women face particular problems of sexism after their husbands’ deaths. According to AWITA, widows are highly oppressed by their husbands’ relatives and deprived of the right of inheritance. In many instances, property left behind is plundered by husbands’ relatives, while the burden of caring for the children is left with the widow. With no economic base it is very difficult for the widows to ensure education (school fees), health care for both their children and themselves, and food for the family. Due to gendered power relationships, women are assigned the role of childcare after marriage and, if she happens to be employed, in most cases she is forced out of her job soon after marriage. This creates problems after the death of the husband since the widow is thus “unemployed.” Also as a result of gendered power relationships, women receive less or no education in Tanzania, and this also undermines their ability to depend on themselves.54

Our interviews with AWITA members offered specific illustrations of the ways these inequalities impacted their lives. Fatuma, for example, worked in an office before her husband died, and although she continued to work, had

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difficulty paying off previous loans. After her husband’s funeral, her husband’s family did not allow Fatuma back into her own home. Eventually she was allowed to take a few small possessions because she was able to show that she had purchased them. Her husband’s family took everything else. Flora’s house was taken away after her husband’s death, and her motherin-law took his money. Seeking economic support, Flora took one of her children to her husband’s clan near Mount Kilimanjaro, but the clan could not reach a conclusion on whether to take the child. At the time of our interview, Flora was renting a single room and running a small business selling batik cloth and jewelry. Lucy left her first husband because he was an abusive alcoholic who beat her daily. Her second relationship was not a legal marriage, so she did not inherit from either man when he died. Lucy had three sewing machines and some money to set up a business, but they were stolen. She would like to set up a baking business, but she needs equipment. When interviewed, Lucy was supporting herself and her children as a primary school teacher, but the pay was inadequate, and she could not pay school fees for the older children. Renetha was married at age seventeen to a rich forty-seven-year-old man. She had lived a “tough life”; her father died when she was a girl, and her mother had a difficult time supporting herself and her daughter. Because of these problems and the dictates of her Islamic religion, she was not allowed to continue her education. She had little choice but to enter a polygamous marriage with an older man who had lost one of his wives to AIDS. Renetha had two children with her husband (the first in 1995 and the second in 1998); both died at the age of three months, presumably of AIDS. When her husband died, Renetha was chased away from her husband’s house. As a second wife, she had fewer rights than a widow in a monogamous marriage. Although she “tried to follow the law” regarding inheritance, her in-laws had money and all the decisions regarding property favored them. She inherited nothing. She tried, unsuccessfully, to start a small secondhand clothing business with some money from other relatives. At the time of the interview she lived with her mother in Dar es Salaam, where she had come in hope of being enrolled in an experimental AIDS protocol at Muhumbili Hospital. Three months after the interview was completed, Renetha died of complications from AIDS. HIV/AIDS The members of AWITA situate themselves within the group of people living with HIV/AIDS. Women, according to AWITA’s Statement of Objectives, are more vulnerable to HIV/AIDS in Tanzania. . . . By virtue of their economic dependence and socially pre-determined behavior, women don’t have

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a say when it comes to sex. It is indeed difficult for them to say “no” to unsafe sex. In some instances they are abused sexually within marriages and in many cases are [disinherited] after the death of their husbands. Women with HIV/AIDS have been stigmatized in the workplace and in the family. Sometimes they are fired from their jobs, thus accelerating their deaths.55

At the time of the interviews a few women had shown no symptoms of their HIV infection, but most of the interviewees had bouts of serious, debilitating illness. One woman suffered a facial stroke; another acquired malaria and experienced severe bleeding with the birth of her last child. Three interviewees (out of thirteen) reported having tuberculosis. Herpes zoster, rashes, headache, and diarrhea were also common. Eight of the thirteen interviewees indicated “treatment” as an important condition for improving their lives. Treatment of HIV/AIDS was not necessarily seen as an end in itself, however, but as a means to continue working and taking care of their children. Only Julieth had spent her own money— long since gone—on treatment. Several others were obtaining some medical care through free HIV-related drug trials at local hospitals and clinics. All of AWITA’s members advocated for the availability and accessibility of cheap treatment and sought to share information on treatment with other AIDS organizations. None of the women were on the antiretroviral “cocktail” that is routinely prescribed in the United States. In addition, the women of AWITA have had to expend energy and nonexistent resources to care for family members with AIDS. Anna spent the last of her money nursing a sick brother who died of AIDS; he left behind three additional children for her to care for. Lilian has suffered through the AIDSrelated deaths of six of her ten children. Income Sustainability It is interesting to note that although the AWITA Statement of Objectives openly challenges discrimination related to sexism, widowhood, and HIV/AIDS, it does not directly address the issue of poverty. Poverty seems to be assumed as a background condition of these women’s lives. Despite the lack of a direct statement, however, a number of AWITA’s members made comments during their interviews about goals relating to the financial sustainability of both individuals and the AWITA organization itself. • Money should go directly to those infected and affected [by AIDS] rather than the current tendency for money to fail to get to the targeted individuals. • The attitude of people toward children’s education must change. School fees must be provided—and where they are provided, there must be better coordination to get them there on time.

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• There has to be a quick way of addressing inheritance. The current practice is to drag it out knowing that the widow will die and the kids will be left with nothing. • Some people who are HIV-positive in the workplace are fired when they are still productive. This practice further shortens people’s lives. • Funders of international [AIDS] conferences need to teach, or set aside funds to teach, how to make papers, presentations, general skill-building. • All of these problems are problems of dependency—we need funds/capital for projects to manage together. Western NGOs could teach business skills for self-management.

The women overwhelmingly reported having had very difficult times financially after their husbands died. The problems began for many during the period when their husbands were sick and unable to work but continued through to include the loss of property to their in-laws after their husbands’ deaths and the lack of support by extended family. A few women had managed to keep or obtain formal employment, but their wages were very low. Most of the others had sought employment in the informal sector, usually selling commodities such as fish, maandazi (doughnuts), or such items as charcoal or kitenge (cloth). Many women talked of having completely depleted any savings they had, either on medicine when their husbands were sick or now on medicine or school fees for their children or themselves. Two women, Lucy and Lilian, attempted to start businesses for themselves, but had their capital (building materials; sewing machines) stolen. When asked to identify their most urgent needs, several priorities clearly emerged. The first was school fees. In Tanzania as in most of sub-Saharan Africa, secondary school students must pay school fees to attend classes. Several women explained that providing a secondary education for their children would represent the best insurance that their children would be able to provide for themselves after their mothers’ deaths. A second urgent priority was instrumental support. This would come in two forms: (1) the treatment that would enable them to stay alive longer and care for their children and (2) the capital to start small businesses or build homes. A third priority was to insure protection for orphans, including their own children, through legislative measures as well as securing adoptive parents. Meyers’ theory noted that those who choose a life plan in the context of material deprivation may significantly alter what they choose because their circumstances render impossible a whole host of desirable choices. The list of goals and priorities above is telling, not only in terms of what the women actually identify but also in terms of what is left off the list because it is unthinkable (e.g., their own education, long-term health care, political power). Currently, these women lack fundamental “power to” control their own lives because others (in the form of families, societies, states, multinational

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corporations) have “power over” them, controlling their access to resources. A precondition of autonomous action for these women is having their immediate physical needs met: income sustainability, payment of school fees for their children, appropriate treatment for their HIV infections. At the same time, however, they are working toward fulfilling their relational goals: educating themselves and others around issues of HIV/AIDS, building support systems for orphans, making AWITA a sustainable organization, communicating nationally and internationally with other AIDS organizations. If the women of AWITA are going to fulfill either their physical or relational goals (and these categories certainly overlap), they need a great deal of assistance from the “developed” countries whose economic policies exacerbate the pain of those living with AIDS in sub-Saharan Africa. Autonomy and the Community It is important to stress that the concept of autonomy, once associated in the West with isolation and complete individuality, can coexist meaningfully with the fact that humans are social creatures. The pursuit of autonomy is not an individual endeavor. We neither know who we are nor act on our life plans in a vacuum. Our self-concept is constructed in communication with others,56 and we act on our plans with other people’s help.57 Acknowledging the connections between autonomy and community allows us to employ the concept of autonomy effectively in collectivist, non-Western cultures as well as to identify group actions as contributing toward individual autonomy goals. African women are well aware of the connection between group action and individual goals, as Tripp found in her survey work among women who have joined women’s organizations in Uganda. Not only did they identify this connection in their answers to survey questions, they also demonstrated their understanding of the link in the names of the groups themselves. A particularly striking example is the group Agali Amo, which is an abbreviation of a proverb translated as “when the jaws do not come together they cannot bite.”58 In a similar discussion of the empowerment work of the Tanzania Gender Networking Programme (TGNP), Mbilinyi reminded us that “both individual and collective action are called for to change power relations, often in several sectors at the same time.”59 In order to pursue individual life plans, AWITA’s members are involved in collective actions. As their Statement of Objectives points out: “We have found it important to figure out ways to solve our problems as a group.” AWITA wants to distinguish itself as “an autonomous group,” somewhat separate from the group of (1) African women, (2) widows, and (3) people with AIDS. “As women widows living with HIV/AIDS, our problems are unique,” they wrote, although “we share and draw experiences from each above-mentioned group.”60

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One of AWITA’s most important tasks is to educate Tanzanian society to see AIDS as a collective problem rather than an individual misfortune. The AWITA Statement lists among its “Specific Objectives” the following: • • • •

•

To fight for the rights of widows living with HIV/AIDS, to make sure that they are not stigmatized and rejected. To promote primary and secondary education and medical care activities for orphans. To promote service centers for counseling AIDS orphans and general reproductive health information and services. To work hand in hand with the media and lawyers in educating women and orphans concerning their basic rights, especially on HIV/AIDS issues. To create awareness on HIV/AIDS in Tanzania through a personal experience approach while emphasizing the particular vulnerability of young people and women to HIV infection.61

The AWITA organization seeks to provide a forum for collective action. African women with AIDS cannot hope to achieve life goals for themselves without allying themselves with others.

Conclusion: Approaches and Recommendations There have been hopeful signs that some opportunities and resources may have become available since the women of AWITA began their organization in 2002. In his 2003 State of the Union Address, President George W. Bush outlined a multi-billion-dollar, five-year initiative to address the AIDS pandemic in Africa, including Tanzania. This program, according to the administration’s figures, would provide Tanzania more than $100 million in aid for prevention and treatment in FY2005 and would increase that number to almost $130 million in FY2006.62 Tanzania has also successfully applied for multi-milliondollar grants from the UN-initiated Global Fund to Fight AIDS, Tuberculosis, and Malaria, and the government has unveiled plans to bring 44,000 people into free antiretroviral treatment. Additionally, in 2003, the Tanzania Women Lawyers Association (TAWLA) released its Review and Assessment of Laws Affecting HIV/AIDS in Tanzania, conducted at the request of the Ministry of Justice and Constitutional Affairs, which highlights a number of the same issues described by the women of AWITA. Although these changes represent only a small fraction of the resources that need to be marshaled to deal with this catastrophe, they do present an opportune moment to consider how money for AIDS relief in sub-Saharan Africa might be used most constructively. On the basis of our data, we conclude that any effective

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policy must focus on the voices and needs of African women—whose poverty and subordinate status cause them to suffer the effects of AIDS disproportionately. The project of controlling HIV/AIDS in Tanzania begins with the empowerment of women. These women, we found, are beginning to articulate their demands and organize around their experiences as widows with AIDS. A combination of tragedy, anger, and insufficient resources has mobilized them. Most contracted AIDS from their husbands. Most had no resources to meet their material needs, whether because they are too ill to work, because their husband’s property has been stolen from them, or because their extended families have abandoned them. Many had watched their children die. Almost none had the simplest medical treatment. But they were able to clearly articulate their needs: school fees to pay for their children’s education, affordable and effective medical treatment, a reliable way to make a living. They have sought selfsufficiency but know that they cannot achieve it alone. They have begun to engage in a collective struggle in a bid to win individual survival. Our study suggests that we can only address the suffering of these women by employing a two-pronged approach. First, we must address the needs of African women as articulated by African women. We must listen to their voices, understand their problems from—as much as possible—their points of view. Even though this is a challenging task, both intellectually and culturally, its value is clear. As one commentator put it: “When one sees [the] other within her own context, one sees women making a number of choices within the context of their complex social fabric.”63 We must trust these women’s analysis of their own position. Only African women who cope with HIV/AIDS understand how their lives and problems are lived. The current failure to consider the circumstances of these women, and their articulated needs and desires, has resulted in policies that cannot improve their lives or health. For example, the Bush administration’s stated desire to devote resources to a prevention strategy based on abstinence and monogamy disregards the lives and voices of women and their organizations, which operate in a system of severely imbalanced gender power relationships. We similarly question the wisdom of preaching abstinence to women for whom commercial sex work is more accurately understood as survival sex work. This focus on the needs of African women is predicated on a conceptual shift whereby we acknowledge that African women are beginning to assert their own agency, claiming their own autonomy, rather than seeing them as helpless victims. African women strive to realize control over their lives in a way that invokes Western conceptions of autonomy but without either the resources that are necessary to realize those goals or the stereotypical Western assumptions that autonomy is the product of an isolated self. The second part of the approach is that autonomy cannot be achieved without empowerment; the two work hand in hand. The concept of “power to”

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that was discussed in Chapter 2 is inextricably linked to autonomy. Empowerment, and women’s empowerment in particular, is embedded in processes whereby women take control and ownership of their own lives.64 According to Kvinnoforum, a Swedish group that works with multimarginalized women and girls, autonomy (which they term agency) is one of three core elements of women’s empowerment.65 The lives of the Tanzanian women in this chapter clearly illustrate that “the space for women’s activity and agency is limited by a number of factors; women’s own ideas of what is possible for them to do, laws regulating what is legal or illegal for women to do and societal norms for what women should and should not do.” 66 In other words, women’s ability to exercise the “power to” control their lives is affected by those who have “power over” them, in numerous and complicated ways. Ultimately, our focus is autonomy—the ability of an individual to live in harmony with her authentic self. What this really means, to return to Meyers’ conception, is that individuals are able to define who they are and what they want and are able to act on this knowledge.67 When people do this more often in ways that better represent who they really are, they have more “autonomy competency” rather than less. The fact that Tanzanian women with HIV/AIDS exhibit less than full autonomy competency does not mean that we should not use the theory to examine their lives; still less does it mean that there is something wrong with the women themselves. It means that we must always be aware of the context in which autonomy is constructed, the degrees to which it can be exercised, how, why, or why not. This brings us back to the question of power. Meyers showed that we do not construct life plans in a vacuum; they are “relative to the resources of the individuals who adopt them.”68 Clearly, the women of AWITA do not presently have access to resources that would allow them to develop full autonomy competency, as Meyers understands it. Meyers also argued that autonomous people “must act on their life plans to confirm whether they are appropriate or inappropriate,”69 and they “must be able to correct themselves when they get the answer wrong.”70 Unfortunately, the realities of power and lack of resources in Tanzania make it impossible for the women of AWITA (and still less, women who have not organized into a group like AWITA) to try on life plans for confirmation about whether or not they are an appropriate fit. Furthermore, Meyers’ claim that autonomous people exhibit both resistance and resolve—resisting unwanted pressure from others and showing resolve by determining to act on their own judgments71—is a tall order for Tanzanian women with few options. To the degree that Tanzanian women gain “power to” control their lives or become more empowered, they will exercise correspondingly greater degrees of autonomy. They are remarkably clear about what their autonomy would look like in practice and will exercise greater autonomy competency as soon as conditions allow.

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Notes The authors would like to thank the members of AIDS Widows of Tanzania, who took part in the interviews for this chapter. They are also very grateful to African Mlay for his outstanding translation and research services, without which this information could not have been gathered. 1. Diana T. Meyers, Self, Society, and Personal Choice (New York: Columbia University Press, 1989), 49–50. 2. Immanuel Kant, Fundamental Principles of the Metaphysics of Morals, trans. Thomas K. Abbott (New York: Macmillan, 1949 [1785]), 63. 3. Ibid., 53. 4. Ibid., 51. 5. John Stuart Mill argued that “framing the plan of our life to suit our own character” is one of the central components of human liberty. On Liberty and Utilitarianism (New York: Bantam, 1993 [1859]), 15. 6. Linda Barclay, “Autonomy and the Social Self,” in Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, ed. Catriona Mackenzie and Natalie Stoljar, 59 (New York: Oxford University Press, 2000). 7. Marilyn Friedman, “Autonomy and Social Relationships,” in Feminists Rethink the Self, ed. Diana T. Meyers, 1 (Boulder, CO: Westview Press, 1997). 8. Eva Feder Kittay, Love’s Labor: Essays on Women, Dependency, and Equality (Oxford, England: Routledge, 1999); Annette Baier, Postures of the Mind: Essays on Mind and Morals (Minneapolis: University of Minnesota Press, 1985); Jennifer Nedelsky, “Reconceiving Autonomy: Sources, Thoughts, and Possibilities,” Yale Journal of Law and Feminism 1 (1989): 7–36. 9. Friedman, “Autonomy and Social Relationships,” 41. 10. Catriona Mackenzie and Natalie Stoljar, “Introduction: Autonomy Refigured,” in Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, ed. Catriona Mackenzie and Natalie Stoljar, 5 (New York: Oxford University Press, 2000). 11. Ibid., 3. 12. Barclay, “Autonomy and the Social Self,” 68. 13. Tanzania Gender Networking Programme [TGNP], Gender Profile in Tanzania (Dar es Salaam: Interpress Publishers, 2003), 29–30, quoted in Marjorie Mbilinyi, “Animation and the Feminist Social Movement,” in Activist Voices: Feminist Struggles for an Alternative World, ed. Marjorie Mbilinyi, Mary Rusimbi, Chachage S.L. Chachage, and Demere Kitunge, 55 (Dar es Salaam: TGNP, 2003). 14. Meyers, Self, 49–50. 15. Ibid., 59. 16. Meyers wrote, as indicated in the text below, that “self-discovery, self-definition and self-direction are necessary for autonomy” (Self, 80.) 17. Ibid., 52. 18. Ibid., 51. 19. Ibid., 80. 20. Ibid., 83. 21. Ibid., 52. 22. Ibid., 83. 23. Ibid., 76. 24. Ibid., 59. 25. Ibid., 53, 76. 26. Ibid., 215.

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27. Diana T. Meyers, “Personal Autonomy and the Paradox of Feminine Socialization,” The Journal of Philosophy 84 (1987): 624. 28. Ibid. 29. Meyers, Self, 80. 30. Meyers (Self, 87) wrote that “people who have a well-developed competency are curious about and sensitive to their inner lives; they have a lively recall of their own experiences and of human experience they have learned about through conversation, reading, or the dramatic arts; they easily generate alternative courses of action for consideration; they vividly imagine themselves acting in various ways while anticipating the probable consequences of each; they compare the reasons supporting various options with assurance; they candidly communicate their concerns to others; they listen to and assimilate others’ impressions and suggestions openmindedly; they marshal the resolve to carry out their own decisions; they are alert to both their own and others’ negative and positive reactions to their conduct.” 31. Diana T. Meyers, “Intersectional Identity and the Authentic Self? Opposites Attract!” In Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, ed. Catriona Mackenzie and Natalie Stoljar, 159 (New York: Oxford University Press, 2000). 32. Meyers, Self, 87. 33. Gerald J. Stine, AIDS Update 2001 (Upper Saddle River, NJ: Prentice Hall, 2001), 12. 34. Tanzania Commission for AIDS [TACAIDS], National Bureau of Statistics [NBS], and ORC Macro, Tanzania HIV/AIDS Indicator Survey, 2003–4 (Calverton, MD: TACAIDS, NBS, and ORC, 2005), 7, 69. 35. Ibid., 7. 36. Ibid., 9. 37. Bonnie Keller, Demere Kitange, and the Tanzania Gender Networking Programme [TGNP], Toward Gender Equity in Tanzania: A Profile in Gender Relations (Dar es Salaam: TGNP, 1999), 25. 38. Ibid., 26. 39. For a discussion of the reasons for this vulnerability, see Carolyn Baylies, “Perspective on Gender and AIDS in Africa,” in AIDS, Sexuality, and Gender in Africa: Collective Strategies and Struggles in Tanzania and Zambia, ed. Carolyn Baylies and Janet Bujra, 5 (London, England: Routledge, 2000). 40. Keller, Kitange, and TGNP, Toward Gender Equity in Tanzania, 27. 41. TACAIDS, NBS, and ORC, Tanzania HIV/AIDS Indicator Survey, 2003–4, 69. 42. Ibid., 74. 43. An insightful ethnographic study on this trajectory is provided by Peter A. Kopoka, “Women, Poverty, and HIV/AIDS in Africa: The Fate of Young Women Working as Maids in Tanzania,” in Social Change and Health in Tanzania, ed. Kris H. Higgenhougan and Joe L.P. Lugalla, 257–279 (Dar es Salaam: Dar es Salaam University Press, 2005). 44. Keller, Kitange, and TGNP, Toward Gender Equity in Tanzania, 28. 45. Baylies, “Perspectives on Gender and AIDS in Africa,” 11. 46. Patricia Siplon, “AIDS and Patriarchy: Ideological Obstacles to Effective Policymaking,” in The African State and the AIDS Crisis, ed. Amy S. Patterson, 20–23 (Aldershot, England: Ashgate, 2005). 47. Janet Bujra and Scholastica Mokake, “AIDS Activism in Dar es Salaam,” in AIDS, Sexuality, and Gender in Africa: Collective Strategies and Struggles in Tanzania and Zambia, ed. Carolyn Baylis and Janet Bujra, 169 (London: Routledge, 2000).

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48. S. M. Kapunda, “Gender Inequality, Poverty, and Food Insecurity in Tanzania,” in Gender, Family, and Work in Tanzania, ed. Colin Creighton and C. K. Omari (Hoats, England: Ashgate, 2000). 49. C. K. Omari and D.A.S. Mbilinyi, “Born to Be Less Equal: The Predicament of the Girl Child in Tanzania,” in Gender, Family, and Work in Tanzania, ed. Colin Creighton and C. K. Omari (Hoats, England: Ashgate, 2000). 50. Soori Nnoko et al., “Tanzania AIDS Care: Learning from Experience,” Review of African Political Economy no. 86 (2000): 552. 51. Ibid., 552. 52. Association of AIDS Widows in Tanzania (AWITA), “Statement of Objectives,” unpubl., Dar es Salaam, Tanzania, June 9, 2002. 53. Ibid., 1. 54. Ibid. 55. Ibid. 56. See the discussion of dialogic identity in Charles Taylor, Sources of the Self: The Making of the Modern Identity (Cambridge, MA: Harvard University Press, 1989), 36. 57. See Kittay, Love’s Labor; Nedelsky, “Reconceiving Autonomy.” 58. Aili Tripp, Women and Politics in Uganda (Madison: University of Wisconsin Press, 2000), 108. 59. Mbilinyi, “Animation and the Feminist Social Movement,” 55. 60. AWITA, “Statement of Objectives,” 1–2. 61. Ibid., 2. 62. These figures are taken from “U.S. President’s Emergency Plan for AIDS Relief: Country Profile: Tanzania.” Available at the USAID home page: http://www .usaid.gov/our_work/global_health/aids/Countries/africa/tanzania.html (accessed August 1, 2006). 63. Isabelle Gunning, “Arrogant Perception, World-Traveling, and Multicultural Feminism: The Case of Female Genital Surgeries,” Columbia Human Rights Law Review 23 (1991–1992): 189–248. 64. Nina Strandberg, “Conceptualising Empowerment as a Transformative Strategy for Poverty Eradication and the Implications for Measuring Progress,” paper presented at the United Nations Division for the Advancement of Women (DAW) Expert Group Meeting, Empowerment of Women Throughout the Life Cycle as a Transformative Strategy for Poverty Eradication,” New Delhi, India, November 26–29, 2001, 4. 65. Ibid., 5. 66. Ibid., 4. 67. Kvinnoforum similarly maintained that the concept of agency means the ability to define and act upon one’s goals (Ibid., 5). 68. Meyers, Self, 80. 69. Ibid., 83. 70. Ibid., 52. 71. Ibid., 83.

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6 The Political Economy of HIV/AIDS in India Marika Vicziany

By conventional measures, Indian democracy is robust. What is less well understood is how this multiparty political system can simultaneously tolerate extreme violence and extreme indifference toward marginalized people. It is essential to grasp this paradox to understand why India has failed to mount a credible response to the HIV/AIDS epidemic. In an influential article written in the early 1980s, A. K. Sen argued that “it is almost impossible for a famine to take place” in India.1 He spoke of media pressure and party political competition as a way of creating a government system that was responsive to popular opinion. He added an important qualification to this statement—that the less dramatic problem of malnutrition and undernutrition was ignored by the same political system that took the threat of famine seriously. The Indian political system is replete with contradictions of this kind— powerful political reactions to particular issues intermingled with shocking indifference. Political indifference and neglect, moreover, often create situations that in the words of Upendra Baxi give rise to the “microfascism of the local police state.”2 This “microfascism” takes many forms, including the use of excessive violence by the police. During the Indian emergency of 1975–1977, for example, police force was used to round up millions of men for the compulsory vasectomy campaign.3 But India does not need the special circumstances of an emergency to tolerate daily and mundane brutality—the long list of atrocities against Indian dalits (untouchables) attests to this.4 Atrocities continue to deform Indian towns and villages despite the rise of new political parties that reflect emerging political formations among the disadvantaged—the Bahujana Samaj Party or BSP (a dalit party) is one example of these.5 Despite the rise of the BSP, violence against India’s dalits continues. Indian democracy, in other words, is still evolving and throwing up new political voices. This evolution now ensures that atrocities no longer go unreported, yet India has a long way to go before the root causes of violence and discrimination can be expunged. 109

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Police brutality is not accidental. In parts of India it is allowed or even encouraged by powerful social groups who find it useful to mobilize force against the weak. Sometimes the power of the police is augmented or displaced by private armies or militia (e.g., the Indian state of Bihar has numerous militia loyal to particular landlords). What is most important is that police brutality sits on top of a bureaucratic system that is basically unsympathetic to the needs of poor, weak, or marginalized segments of Indian society. The underlying problem is the Indian elites, which not only are indifferent to the extreme inequalities and discrimination that exists in India but also frequently connive with state authorities to assert their own powers over that of ordinary citizens. During the Indian emergency, for example, some 8 million vasectomies were performed because health professionals collaborated with the state and police authorities in pushing through a coercive family planning program.6 In this kind of political culture, the ups and downs of political parties and the system of state and national elections exist alongside underlying continuities that tolerate violence and indifference regardless of who rules in New Delhi. It is this political culture that needs to be examined when discussing the strategies that India has adopted in response to the emerging HIV/AIDS epidemic that exists on the subcontinent. This chapter focuses on the political economy of HIV/AIDS in India rather than only politics per se because the paradigm of political economy provides wider reference points than would apply to a more narrowly defined study of “politics.” The chapter is divided into two parts that deal with this dualistic aspect of India’s political economy: (1) the government’s indifference to HIV/AIDS and (2) the victimization of people who either have HIV/AIDS or are fighting public campaigns against the epidemic. But first some general comments about the nature of HIV/AIDS in India and the role of the National AIDS Control Organization (NACO) are needed to provide the general context for parts 1 and 2.

The Contours of HIV/AIDS in India The continued increase of cases of HIV/AIDS infection in India represents a massive failure of public policy, possibly the greatest policy failure since independence. India had about 4.6 million HIV/AIDS cases, about 12 percent of the global total of 37.8 million at the end of December 2003.7 Of these, about one million Indians have AIDS.8 After South Africa, India has the highest number of HIV/AIDS cases, and the situation is predicted to dramatically worsen with between 9 and 25 million HIV/AIDS cases by 2010.9 India’s AIDS mortality figures are even more dramatic, given the finality of death: in the twenty years up to 2000, about 2.8 million people died of AIDS, and by 2015 another 12.3 million will also have died.10 Behind this accelerating trend

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in the death rate lies the grim reality that India is actually in the grip of two separate and unrelated HIV/AIDS epidemics: the first has an impact on most of the Indian subcontinent and is transmitted through heterosexual intercourse; the second is confined to the northeastern border states of Manipur and Nagaland, where HIV/AIDS is transferred among drug users who share contaminated needles.11 Only the first epidemic is discussed in this chapter. At a national level, relative to total population size, India is a country with low HIV/AIDS prevalence because even in the high risk states of India only between 1 and 3 percent of the women surveyed in antenatal clinics tested positive for HIV in 2003.12 This is much lower than the 25 percent prevalence rates in the urban clinics of South Africa, but given the vast size of the Indian population, even a small percentage impacts on millions of people. What is worrying about India, however, is that in contrast to Europe, the Americas, and Australia, the Indian epidemic is not restricted to particular high-risk groups. Rather it has entered into the general population via heterosexual intercourse, thanks to the universal practice of marriage in India. It is a general expectation, indeed duty, that all men and women will marry. The result is that in India, even men who prefer to have sex with men will also, eventually, become family men. In late 2003, NACO—the government body set up in 1992 to implement strategies for the control of HIV/AIDS—finally acknowledged the role of married men in transporting HIV/AIDS into the general population. The starting point for this proliferation is the presence of HIV/AIDS among India’s female and male sex workers (prevalence levels ranging up to 40 percent and 60 percent);13 from there, the epidemic is carried by married men back to their wives in urban and rural India. It is also carried by married and unmarried men to their urban or rural male partners, for men having sex with men is a much wider phenomenon in India than has been officially recognized.14 And finally, there is a third route: infection is also carried by men to their unmarried female lovers and girl friends, because the sexual revolution that has taken hold of India also compels young men to seek out more sex than is available through their premarital social networks. As a result of these multiple paths, HIV/AIDS has been transmitted very quickly through various human chains reinforced by the fact that the bulk of all this sexual activity takes the form of unprotected sex. NACO estimated that in 2003 over 80 percent of transmission had been through unsafe sex and only 6 percent through mother-child transfers and contaminated needles (3 percent each).15 Indian men have done the two things that should not be done if HIV/AIDS is to be contained: they have had multiple partners, and they have not used condoms. The latter is the only known, reliable barrier against the transmission of HIV/AIDS through sexual intercourse. Feeding off the blasé attitude of Indian men has been one of the most beguiling characteristics of HIV/AIDS: the fact that the infection can lie dormant for between three and fifteen years. By the

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time an Indian male has become aware of his infection, the occasion on which he contracted it is long since forgotten. There is no sign that the HIV/AIDS epidemic is slowing in India, suggesting that, among other things, government policy has failed dramatically. There have been two distinct phases of government approaches to HIV/AIDS. The first was characterized by an indifference to the scale of HIV/AIDS in India and a virtual total neglect of public education through the school and college system and by other means. In the second phase this neglect has continued but alongside a parallel, coercive response that victimizes sexual minorities who continue to be falsely regarded as the root cause for India’s epidemic. This reaction has, in turn, encouraged wider discriminatory practices in which the children of HIV/AIDS patients are also victims. The official account of the government’s aid program ignores these realities, preferring to stress the successes of official intervention, first in cleaning up India’s blood supply and second in encouraging NGOs to play the lead role in changing the attitudes and practices of high-risk groups.16 This official history is only partially true: the purity of blood supply has been much improved, but little else has changed.17 In particular, the NGOs who are supposedly at the center of the government’s response to escalating HIV/AIDS find themselves the focus of hostile attacks by Indian police who persist in seeing the mere possession of a condom as evidence of soliciting clients for sexual favors. But what lies at the root of the discrimination and violence? For centuries, India has been the origin of many of the world’s worst epidemics, including smallpox and cholera. Yet HIV/AIDS is totally beyond Indian experience—it is a disease that does not show its face for many years, it causes opportunistic infections when it does eventually grip the body and so is hard to distinguish clinically from other more familiar killers, and it is transferred mainly by blood-to-blood contact. HIV/AIDS is a thoroughly new disease, and its complexity requires proper explanation and education. Without proper instruction, it is natural to be gripped by panic and for ordinarily decent people to respond by ostracizing those who may be infected. The case of Bency Chandey and her younger brother Benson became international news in 2003 when other parents boycotted the south Indian school that Bency and Benson attended, in the belief that their being HIV positive was a risk to all the other children.18 The central minister for health, Sushma Swaraj, came to change public opinion by hugging the orphans as a way of proving that ordinary physical contact was safe.19 In a specially arranged briefing at the school by local doctors, organized to put parents at ease about the risks of contracting HIV/AIDS, total confusion emerged when questions by parents included one about whether HIV/AIDS could be transmitted by razor blades. The doctors could not agree, causing parents to question professional opinions about the risks of contracting HIV/AIDS more than ever.20 This public fiasco is illustrative of the whole problem of how the state has reacted to the HIV/AIDS epidemic in India: there has been a sim-

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plistic focus on high-risk social groups, minorities, risky environments, and particular causes rather than a stress on high-risk behavior and what constitutes safe sexual practice and low-risk behavior. Unless public policy focuses on changing behavior, the prospect for controlling HIV/AIDS in India looks grim. In the meantime, India’s estimated one million AIDS-induced orphans who are under fifteen years of age suffer extensive social and institutional discrimination, in addition to any health or economic problems they inherit from their deceased parents.21 In these circumstances the greatest responsibility for controlling HIV/ AIDS in India rests with NACO, set up some six years after India’s first HIV/AIDS case was diagnosed. NACO has been generously funded by the World Bank, yet its gross incompetence was documented by India’s comptroller auditor general (CAG), whose 2004 report noted that only 46 percent of World Bank funds had been spent during the first four years of a five-year grant and that forty-six of the forty-nine financial reports from the state agencies of NACO had irreconcilable financial discrepancies.22 Bureaucratic inertia had prevented NACO from developing the infrastructure needed to contain HIV/ AIDS; moreover, the existing infrastructure was poorly utilized. For instance, NACO was unable to purchase 3.3 million condoms needed for the special social marketing program it had been charged with.23 The free distribution of condoms has been criticized because of the poor government networks that exist for getting the condoms to the public; instead, social marketing involves subsidized condoms being distributed by various companies to a variety of retail outlets and vending machines. Despite the government’s preference for social marketing, condoms distributed by this means in 2002–2003 still represented less than 10 percent of the freely distributed condoms.24 Social marketing through condom machines, moreover, has been hampered by defective machines.25 As a result of these obstacles, in most parts of India it takes much more than thirty minutes to find an outlet giving away or selling condoms, which is the target set by NACO as a reasonable threshold for easy access to condoms.26 NACO also fell short of all the other targets it had been given, including training of medical personnel. Moreover, the money that was spent was poorly used—for example, medical equipment was purchased but not installed, and installed equipment, such as HIV test kits, proved to be too defective to yield reliable results.27 The net result of NACO’s inefficiency has been that a high percentage of people in some parts of India had not even heard of HIV/AIDS by 2003, nor had they heard that it was transmitted mainly through sexual intercourse. Rural India was especially poorly informed, in particular in the populous states of West Bengal, Bihar, Gujarat, and Uttar Pradesh. Even worse, almost half of the Indian population did not know how to avoid HIV/AIDS infection, and among high-risk sections of the population many ill-founded fears were common, including the fear of catching HIV/AIDS through mosquito bites.28

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The dismal performance of NACO, the key central government of India body charged with the task of controlling the HIV/AIDS epidemic, is a symptom of a much deeper administrative corrosion in India, as the following sections argue. In the case of the HIV/AIDS campaign, it has been suggested that NACO’s dependence on NGOs to push through public awareness of HIV/AIDS and promote the use of the condom has contributed to this public policy failure. At first, giving NGOs an important role was welcomed by civil society advocates such as Ashok Rao Kavi, founder of the Humsafar Trust (Mumbai), a leading gay rights organization.29 Now the benefits of this are in dispute. It has been suggested that the task of controlling HIV/AIDS in India has in effect been delegated to the least powerful organizations, which stand outside the conventional Indian bureaucratic system. As such they have little influence over the infrastructure and the funds that have been allocated to controlling the epidemic. Moreover, these NGOs all draw their membership from criminalized sections of Indian society. They are criminalized because by the definitions of Indian law, the NGOs that bring together activists from the gay, lesbian, transvestite, and prostitute communities are all criminal or semicriminal. These NGOs can speak to their immediate members and clients, but they cannot easily reach beyond them, and as discussed later in this chapter, even outreach among themselves is difficult owing to the hostility of police and society in general. The earlier optimism of the NGOs has disappeared. Now they are locked into a daily battle with NACO to assert their authority and relevance to the campaign to contain HIV/AIDS. Humsafar and other NGOs have been increasingly sidelined by the Indian bureaucracy, which would prefer to allocate funds (including generous international donations) to alternative uses of “wider benefit” to Indian society, such as reducing infant and maternal mortality. Indian bureaucracy, in other words, is actively contributing to the escalating epidemic by (1) insisting that the benefits of controlling HIV/AIDS give an advantage to only a small minority of Indian society— namely people whom they regard as sexual deviants and (2) ignoring the continued spread of HIV/AIDS into the general heterosexual community. It is these attitudes and values that explain why the Indian public is indifferent to HIV/AIDS, why ordinary Indians do not regard HIV/AIDS as “their” problem, and why the police and civil servants resort to high-handed tactics and extreme coercion against marginalized or criminalized minorities whom they regard as the cause of this new threat to Indian health.

Phase 1: Government Indifference Since 1985 Even well-educated youth are poorly informed about the methods and risks of contracting HIV/AIDS. The resistance to sex education comes not so much from parents but rather from educators and civil servants who prefer not to deal

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with subjects that they regard as personal and embarrassing. At the highest political levels, there has been a reluctance to admit that only the condom works in preventing the transmission of HIV/AIDS by sexual intercourse. The politics of Hindu fundamentalism has not helped. From 1998 to 2004, India was ruled by a right wing, Hindu fundamentalist coalition led by the Bharatiya Janata Party (BJP). The BJP’s conservative view of the role of the Indian family, and of women in particular, could not provide a realistic response to this unfamiliar killer.30 The BJP health minister, Sushma Swaraj, insisted that the Indian tradition of sexual abstinence and faithfulness provided more effective protection than the condom. With the highest civil servant in the Indian health system adopting such views, it is not surprising that the educational system could not address the problem of HIV/AIDS education. Another prominent leader of the Hindu fundamentalist party, the Shiv Sena, has described the HIV/AIDS epidemic as “hype.”31 A study by Sachdev (carried out in 1993–1994) showed the degree of ignorance among 887 elite students at two universities in New Delhi. These students were mainly young, unmarried women, 41 percent of them nursing students. The students should have known more about HIV/AIDS than most other sample groups in the Indian population, but they did not. Sachdev reported that 42 percent did not know that someone who did not have the physical manifestations of AIDS could infect you with HIV.32 Ten years later, there had still not been a major educational campaign about HIV/AIDS. In 2002, students at the Maulana Azad Medical School New Delhi believed that HIV infection only targeted “bad persons.”33 In 2004, UNAIDS quoted a national study undertaken in 2001 showing that 25 percent of a sample of 85,000 respondents had not even heard of AIDS. Nor did the respondents know much about any diseases transmitted by sexual intercourse: more than half (66 percent) had never heard of sexually transmitted diseases (STDs).34 Those who were aware of HIV/AIDS were not well informed. Human Rights Watch reported that 75 percent of respondents in one World Bank survey were convinced that they could catch HIV/AIDS by sharing food with infected persons; almost the same proportion, however, thought that people who looked healthy did not carry the disease.35 These contradictory and inaccurate beliefs make it very hard to control the spread of HIV/AIDS. Surveys are now confirming the ignorance of India’s new middle classes too. One study of middle-class factory workers in Tamilnadu and Pondicherry showed that 39 percent did not know that STDs could not be transferred if the partners used condoms.36 The CAG’s 2004 review of NACO’s condom program noted that general awareness about the availability of condoms was less than 75 percent in the highest-risk states in southern India; awareness in rural areas was much worse.37 The new physical mobility that has become a characteristic of the Indian business world also threatens the health of men who do not understand that

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regardless of the glamorous environment of five-star hotels, unprotected sex is always a risk even if no prostitute is involved. Rich Indians are paying “classy” sex workers and avoiding brothels because only the latter suffer from social stigma and perceptions of risky behavior.38 Business travel now provides executives with an opportunity to engage in a bit of social daring with alcohol and casual sex. Graduates aspiring to the top of the professional ladder imitate this behavior to show that they are upbeat too. One Chennai-based study of over 16,000 people reported that 43 percent had affairs prior to marriage and of the married men a further 20 percent continued their affairs after marriage.39 Only 2 percent of the latter used condoms. Young people under the age of thirty in India today constitute some 33 percent of HIV-positive cases. Given the absence of an adequate public education campaign, higher levels of education are associated not with low-risk behavior but rather a more opportunistic approach to life that ignores the dangers of unprotected sex. One study of about 125 HIV-positive men and women attending private HIV clinics in Chennai showed that 65 percent were graduates, 25 percent were postgraduates, and 7 percent had doctorates.40 Although India’s sexual revolution is increasingly reflected in socioeconomic surveys of HIV/AIDS prevalence, Indian governments have routinely ignored this information. For example, the secretary of elementary education in New Delhi told Human Rights Watch that “children did not need information about HIV/AIDS until they became adults.”41 Some schools in Tamilnadu and Andhra Pradesh have offered some education on HIV/AIDS after Grade 8, but by then the poorest students and most girls have left school.42 According to the CAG’s 2004 report, except for Kerala, Nagaland, and Andhra Pradesh, the new national School AIDS Education Program initiated in 1999 had failed to reach its targets: in seven states no data were available; in two states the program was not implemented until 2003; in Punjab and Uttar Pradesh there was no program at all; and in the high-HIV/AIDS-prevalence states of Maharashtra and Tamilnadu, fewer than a quarter of the targeted schools were “covered.”43 Moreover, the meaning of coverage is unclear and says nothing about the effectiveness of instruction. Indian government reports confirm that one result of such neglect is that poverty-stricken, illiterate, and disadvantaged women know the least about HIV/AIDS.44 In one study, 60 percent of women had never heard of AIDS, and a third had no idea about how to protect themselves.45 Many schools could not be persuaded to teach their students about HIV/AIDS because anything to do with sex was seen as improper. In the elite colleges of Mumbai, HIV/AIDS was declared a theme of all classroom essays some five years ago, but the students had to find the information themselves.46 Those schools that do have some HIV/AIDS instruction normally restrict the total number of hours being spent on the topic to no more than two for an entire year.47 The

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attitude of school principals toward any kind of sex education, even when linked to the deadly HIV/AIDS epidemic, has generally been hostile.48 The failures of the Indian educational system are reinforced by the failures of the health system. Today, as has been the case since the 1970s, India’s public health system is characterized by apathy toward the intended beneficiaries. Partly this is because the hierarchy of government service gives high value to ministries associated with business and technology. Public health has always been a low career priority. The result is that tuberculosis (TB), which has virtually been abolished from the Western world, continued to account for about 5 percent of Indian mortality in 1998. That represented about 14 percent of all deaths from infectious diseases, followed closely by AIDS, which accounted for 6 percent of deaths from infectious diseases (and 2 percent of total deaths).49 Projections to 2033 show that TB will cause 4 percent of total deaths but will be outstripped by HIV/AIDS, accounting for 17 percent. As a percentage of deaths from infectious diseases, HIV/AIDS will account for 40 percent in 2033 and TB 9 percent. In the short term, India’s inability to contain TB has a direct bearing on the proliferation of HIV/AIDS, given that persons who already have TB are more susceptible to HIV/AIDS.50 According to Yussuf Hamied, CEO of Cipla, the company that developed India’s first antiretroviral (ARV), one in three Indians has dormant tuberculosis.51 The other major co-infections of HIV/AIDS in India are other STDs. In the 1999–2001 period, NACO’s study of 321 STD clinics, or half of such clinics in India, revealed the dysfunctional nature of a large percentage of these: they were physically inaccessible, they had too little space and poor laboratories, two-thirds lacked proper equipment, two-thirds had only nonmedical staff in attendance, gynecologists for female patients were a rarity, and in general they were poorly attended with most of them receiving fewer “than 10 patients per day.”52 Moreover, the clinics did not do much to promote low-risk sexual behavior: even after attending an STD clinic, fewer that 40 percent of patients received any condoms.53 Understanding the extent of India’s inability to mount an adequate response to tuberculosis and STDs gives us some idea of how difficult it will be for India to contain HIV/AIDS now that it has established itself in the general population. India’s health infrastructure consists of private and public components, but with HIV/AIDS the demands on the public health system are growing as even wealthy, HIV-positive patients are turned away from private clinics.54 These new demands are pressing on a much depleted and highly inadequate government health service characterized by the lack of professional ethics, theft of supplies by doctors who also operate private clinics, appalling hygiene, and shortages of medical supplies, infrastructure, proper maintenance, and personnel. New evidence is also emerging to show that the economic liberalization of the Indian economy has produced a great reduction in public health expendi-

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ture, placing the inadequate system under more pressure than ever before.55 In particular, there is a chronic shortage of free or subsidized condoms procured and distributed through the health bureaucracy.56 A recent World Bank study has noted that promoting the use of ARVs in India will not deliver the expected health benefits unless condom usage increases beyond the current threshold of 50 percent among high-risk groups.57 Condoms remain critical for controlling India’s expanding incidence of HIV/AIDS. As resistance to using condoms gradually erodes, the emerging bottleneck is lack of condom supplies. Antiretrovirals cannot provide the necessary answers for countries such as India that have vast, poor populations. In 2000, two Indian pharmaceutical companies (Cipla and Ranbaxy) released generic ARVs that have reduced treatment costs to less than one US dollar per day.58 In 2002, fewer than 12,000 Indians were being treated with these drugs, partly because even this small amount of money constitutes a large sum in a country where more than 200 million people live on less then one US dollar per day (the official poverty line).59 In December 2003 the Indian government decided to provide ARVs to 100,000 children in the six most acutely affected states.60 The program targets fewer than half of the children under fifteen years old who are estimated to have HIV/AIDS in India,61 and the criteria to be applied are unclear. In many cases, however, even the free distribution of ARVs is not enough: extra subsidies to cover the travel costs of poor patients are needed.62 What is more important is that administering ARVs is complex and requires special skills that are not readily available outside the large capital cities of India. It is doubtful that India’s starved medical system can spare the resources needed to address all these needs. ARVs also prolong lives,63 and so these “miracle drugs” may encourage people to become blasé about using condoms. If people with HIV/AIDS infection live longer, this also increases the risk of more rather than less cross infection in the long run. Taken together, these arguments reinforce the need for more effective preventive strategies, especially better promotion of condom usage. In January 2005, the TRIPS agreement component of WTO membership began to have an impact on India, with the result that the protection previously provided by the 1970 Indian Patent Law to the production of cheap Indian drugs has now been removed. It is predicted that ARVs and other pharmaceuticals will now become more expensive, placing even greater emphasis on preventive rather than curative strategies toward HIV/AIDS inside India.64 Even if special exemptions from particular TRIPS clauses could be made in the case of Indian ARVs, this would allow India to remain a major exporter while lacking the domestic resources to provide for its own population.65 In the meantime, India’s poorly informed public has reacted to HIV/ AIDS by ostracizing persons known or suspected of having the infection. In particular, this has placed a high burden on the children of parents with HIV/AIDS regardless of the health status of the children. When the ordinary

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citizens of India are drowning in a sea of ignorance, there are terrible consequences for the children. Four-year-old Prabaharam K. was threatened by separation from his mother because she was HIV-positive and he was HIV-negative. The hostel that was looking after them wanted to protect Prabaharam by separating him from his mother, heedless of the other traumatic consequences for the boy.66 Children who watch their parents die are also convinced of their own imminent death, fall into depression, refuse to eat, and simply wait for the “inevitable” to happen.67 The death of parents makes the physical and psychological burden worse, with children often being turned out of their parental homes and deprived of their inheritance.68 Then there are also the expenses incurred in caring for family members who do have HIV/AIDS. The daily struggle of living with HIV/AIDS in India is so great that most people do not want any tests taken, even if they suspect the worst.69 In the absence of any evidence to show that they are HIV-positive, a widow and her children have a chance of living within the extended family even when the husband dies. If they have tests to confirm that they are HIV-positive, they risk rejection.70 Unfortunately, there is no culture of patient confidentiality in India. If test results are HIV-positive, that information will very quickly reach the local community. This in turn provides another inducement for avoiding all tests. The result of all these factors is that a considerable proportion of the HIV/AIDS epidemic has gone underground, thereby increasing the risks of infection spreading more rapidly. For example, a poor HIV-positive, pregnant woman is likely to be sick and so prefer a hospital delivery for her child. Given discrimination, however, she is not going to declare her HIV-positive status.71 In such cases, a hospital delivery puts many other people’s lives at risk, as the hospital is unable to ensure that proper procedures are followed during the child’s delivery. This in turn has compelled many hospitals to insist on HIV/AIDS screenings—typically without consent. If screening confirms the HIV-positive status of the woman, she will be turned away, partly because most Indian hospitals have no procedures for handling HIV-positive cases. The lack of procedures, in turn, feeds public paranoia about HIV/AIDS, with the result that professionals—who should know better—act in highly discriminatory ways: doctors refuse to conduct physical examinations of HIVpositive patients,72 public and private hospitals refuse to treat HIV-positive clients,73 schools turn away HIV-positive children or HIV-negative children who have HIV-positive parents, and so the cycle of rejection and denial continues. The victims then seek to protect themselves, as did Idaya M., who had an HIV-positive husband, resulting in her older, HIV-negative daughter being thrown out of a residential school. When the younger daughter tested HIVpositive, it remained a family secret.74 The next part of this chapter looks at the official harassment that has emerged as part of the state’s response to HIV/AIDS. The lack of an appro-

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priate educational and medical policy on HIV/AIDS does not mean that Indian governments have been passive. Rather, they have tolerated draconian interventions that victimize particular segments of society and do so in a manner that places the general population at even greater risk of contracting HIV/AIDS. This dualistic policy has a long pedigree in India. During the 1970s, India experienced a catastrophic government-police attack on male fertility in a vasectomy campaign that resulted in the sterilization of between 6 and 8 million men in less than eighteen months. The campaign puzzled many observers of India, who had accepted Gunnar Myrdal’s view that India constituted a “soft state” that lacked the brutality of authoritarian states such as Maoist China. But Myrdal failed to understand how the Indian elite, when driven to meet targeted development goals, was capable of extreme coercion.75 Elements of this authoritarianism survive today and help to explain why the state and police can act with brutality and victimize identifiable minorities, despite the inability of Indian states to mount routine policies to deal with HIV/AIDS.

Phase 2: Victimizing Minorities and High-Risk Groups In a society driven by hierarchy and the norms of caste, it is especially easy to exclude marginal social groups and to blame them for natural disasters and epidemics. The traditional Indian response to epidemics has been to make offerings to the goddesses whose wrath has brought about disease. For instance, Sitala Mata is worshipped to ward off smallpox. But human intervention is also highly valued and typically takes the form of co-opting dalits (the untouchable castes) to use their power with the underworld to deflect the negative energies of the destructive goddess. When the dalits began to resist the role that had been forced upon them by custom, they were often blamed for whatever disasters then befell Indian villages.76 Today, the marginal groups that are being blamed for India’s HIV/AIDS epidemic are sex workers, gays and lesbians, sexual minorities such as the hijra and kothi (transgender communities), and outreach workers. The homosexual and bisexual population of India probably exceeds 50 million, assuming that the work of Kinsey applies to the Indian population as much as to that of the United States. The majority of these men are either married or will eventually marry.77 Truck drivers and men who have sex with men also constitute “sexual” minorities in India, each making its distinctive contribution to the spread of HIV/AIDS. These groups are not subjected to the systematic discrimination that applies to the others, however, largely because the categories “truck driver” and “men who have sex with men” are indistinguishable from Indian husbands, and Indian husbands are immune from social ostracism and criticism. It is not their fault that HIV/AIDS has become a scourge; rather it is their

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female or transgender or gay and lesbian partners who are to blame. By contrast, openly gay men in urban India who refuse to conform to the social norms of marriage suffer from special ostracism and discrimination.78 This conventional “wisdom” needs to be challenged if appropriate, risk-avoiding behavior is to become the basis for responding to the HIV/AIDS epidemic. Victimization of Sex Workers Victimizing female Indian sex workers is only possible if society considers them to represent a separate social category. In fact, the majority of sex workers in India are also wives and mothers. Indeed, it is the fragility of family life, caused largely by mass poverty and economic uncertainty, that drives many women to prostitution. Poverty itself can be caused by domestic instability, as a recent survey of Tamilnadu revealed. Factors that drove women to prostitution included indebtedness, single parenting, and the birth of children.79 When a husband loses his job or dies, a woman might turn to the sex trade in desperation.80 Sometimes the wife is lucky enough to inherit her husband’s job, but the level of remuneration is typically less than half that of the male wage. India has between 2 and 8 million female sex workers.81 In Tamilnadu, about 70 percent of the 6,000 sex workers in Chennai are poor girls or housewives who work from home. By contrast, at transport hubs such as Salem, the women work the streets.82 Working on the streets and from home is also typical of the large towns of Maharashtra, including Mumbai, but the western Indian cities of Mumbai, Pune, and Sangli also have a more organized sex industry with brothels, madams, pimps, and criminals. In Maharashtra the majority of sex workers are illiterate, and many come into the profession via the traditional system of devdasis, whereby pubescent girls from poor families were gifted to the temples as servants; these days, these servants end up in Mumbai’s brothels. This is in contrast to Tamilnadu, where the female sex workers are literate, and the devdasis system does not thrive. In a dramatic demonstration of how intolerant the state can be of sex workers, on June 14, 2004, more than 1,000 houses were bulldozed in Baina, the red light district of Goa, after the High Court of Bombay ruled in favor of redeveloping the site.83 About 250 houses belonged to sex workers who were supposed to be relocated into a new estate surrounded by barbed wire. In 1989 the Maharashtrian government extradited Tamil prostitutes to Chennai; the Tamilnadu government was hardly more enlightened, having imprisoned some 800 of its own sex workers.84 The result of such draconian intervention is that the fight against HIV/AIDS is weakened. According to Human Rights Watch, the Baina prostitutes were promoting the use of condoms among themselves and the wider community. The demolitions dispersed the sex workers and brought to an end “the solidarity they needed to enforce condom use among their clients.”85 Despite protests against such high-handedness, in

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1994 the Maharashtrian government passed the Protection of Commercial Sex Workers Act. One result was the mandatory branding of all red-light district sex workers with indelible ink—a strategy that discriminates against prostitutes but does nothing to promote safe sex practices.86 There are many other studies that show that in comparison to ordinary wives, India’s sex workers are not only better informed about the nature of HIV/AIDS but also better able to negotiate the use of condoms and are better managers of self-help programs. When an STD project was established in the Songachi brothel in Kolkata, the sex workers quickly took control and within two years persuaded male sex workers to join. Like the Baina prostitutes, the Songachi sex workers were able to force their clients to use condoms because no prostitute in the area was willing to have unprotected sex. Group pressure of this kind ensured that no prostitute feared losing a client to another sex worker who was prepared to forgo the use of condoms.87 Knowledge about HIV/AIDS is nevertheless very patchy, especially among sex workers who do not belong to collectives that work with NGOs. One survey of Maharashtra and Tamilnadu showed that 90 percent of the prostitutes had heard of AIDS and between 80 percent and 85 percent knew how it was transmitted. At the same time, about half of the prostitutes were so naive that they believed that regular and healthy-looking clients were a low health risk.88 Moreover, safe sex practice in the workplace is not always transferred into the private lives of prostitutes. For example, sex workers in Tamilnadu reported using condoms with their clients 90 percent of the time but only 40 percent of the time with their normal partners.89 This has been confirmed by an Operations Research Group (ORG) study showing that if 60 percent of brothel workers used condoms for paying clients, this came down to only 21 percent for nonpaying clients.90 One reason for the rejection of the condom by lovers and husbands is that the condom in India has become a metaphor for prostitution, and lovers and husbands do not want to be treated on a par with commercial clients. Such attitudes only survive because the epidemiology of HIV/AIDS transmission is poorly understood. Indian men assume that HIV/AIDS will be caught from women, including their wives. It does not occur to them that it is the men who are the best vehicles for the transfer of infection.91 As such, public attitudes toward HIV/AIDS reflect the other gender biases that contemporary India suffers from and that routinely victimize women, sex workers, housewives, and transgender people. In one case reported by Human Rights Watch, a woman lived with her husband’s family when he sought work in Mumbai, the HIV/AIDS capital of India. When he returned he fell very sick, but it was the wife who was blamed and thrown out.92 The gender biases against Indian women were probably reinforced by the program of Hindu fundamentalism that was pushed by the Bharatiya Janata Party, the core of the right-wing coalition that formed the government of India

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from 1998 to 2004. The BJP has had a program of social reform that has promoted the traditional role of Indian women as the supplicant wives, daughters, and servants of the Indian family.93 Such policies make it harder for Indian women to break out of the role models that subject them to the will of their husbands, even when that will constitutes a major health risk. Typically, a woman will know or guess that her husband has been “messing around,” and she may even know that this puts her at risk. Despite this, a wife or girlfriend is unlikely to insist on the use of a condom.94 Male expectations of the subordinate role of women begin early in life when the boys are already treated like little gods. Gender discrimination persists even among HIV/AIDS-infected children. For example, Lalita and her brother were orphaned when both parents died of HIV/AIDS. The grandmother who cared for them indulged the boy and treated the girl like a servant.95 According to Meena Seshu, the head of SANGRAM (an HIV/AIDS prevention, treatment, and support organization), “gender inequalities . . . are fueling the epidemic.”96 Lalita was lucky: more typically, even relatives do not want female orphans, regardless of their HIV status. In such cases, the dying parents may seek to arrange a marriage for the girls as a form of social insurance.97 The age of marriage among such families is falling; the marriages themselves sustain the cycle of HIV/AIDS infection if the girl happens to be HIV-positive. Most wives in India are not prostitutes, and their knowledge about how to prevent HIV/AIDS is very poor partly because HIV/AIDS is perceived to be a disease of prostitutes, rather than ordinary women. Nor do they appreciate that HIV/AIDS has a long incubation period, that it is transferred by contact with contaminated bodily fluids, and that condoms are the only known, effective barrier product. According to a 2001 survey by the Population Foundation of India, about 52 percent of Indian women did not know that condoms could prevent the transmission of HIV/AIDS. The percentage was much lower among the men surveyed—only 30 percent.98 There are significant regional variations in this knowledge: for example, Maharashtra and Tamilnadu, the two Indian states in which the prevalence of HIV/AIDS is the highest, reported that more than 50 percent of the women did not know that regular condom use was the best barrier against the transmission of HIV/AIDS.99 The awful paradox about Indian modernization is that the women stay in their home towns and villages and are blamed for passing HIV/AIDS to their husbands and lovers, whereas the men, who are increasingly mobile over vast distances, separated from family life, and lonely, seek the company of sex workers, colleagues, and other men and through unprotected sex carry the infection back to their families. India’s largest cities are male dominated. Driven by the promise of better wages and employment possibilities, the men leave their wives behind while they move to the cities, especially those in the economically dynamic Indian states. Thus western India has large populations of male workers from the economically stagnant eastern states and even from Bangladesh.100 Typically, a young male Indian worker in Mumbai will only see

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his wife and children in faraway Orissa once or perhaps twice a year. Having a relationship with a prostitute or another man is one way of overcoming loneliness and social frustration. It is no coincidence that in 2002 these cities also had large numbers of people living with AIDS: Ahmedabad, 15,000; Mumbai, 10,000 (a number we believe to be a gross underestimate); Bangalore, 20,000; Hyderabad, 35,000; Delhi, 45,000; and Surat 45,000.101 The opportunities for men to have sex with men are many in cities where men live together and sleep in shifts with other men. Unprotected sex among the men is common, largely because it is assumed that HIV/AIDS is something that one catches when visiting a prostitute. Men-to-men sex, by contrast, is widely regarded as swift and clean and therefore of low risk. The Western concept of “homosexual” is foreign to these men, most of whom are either married or plan to marry.102 Life in Indian villages also promotes male-to-male sex, given the segregation of the sexes in Indian households. As a result of these early habits, homosexual activity does not stop with marriage. One survey taken in 2002 of five Indian cities reported that 27 percent of men who had homosexual experiences were married.103 Another survey of homosexual activity revealed that 23.6 percent of the Mumbai respondents were probably infected with HIV/AIDS; in Tamilnadu the proportion was much lower, only 2.4 percent.104 Linking Indian cities is one of the world’s largest highway systems, which annually supports the livelihoods of an estimated 5 million truck drivers.105 During an average trip of about 620 miles, a trucker is likely to have sex with three prostitutes over a period of four to ten days.106 An early study confirmed the promiscuous life of the truckers: in a survey of almost 6,000 in 1994, 87 percent said that they had had many sexual encounters, and only 11 percent of them had used condoms. By 1994, the infection rate among truckers was already 10 percent. By 2002, it was about 50 percent. The older the man, the less likely he is to use condoms. A number of WHO and World Bank projects now focus on changing the behavior of truck drivers.107 The regional impact of these habits is yet to manifest itself, given that many of India’s truck drivers (and soldiers) originate from the Punjab, and at the moment the Punjab appears to have a low level of HIV/AIDS incidence.108 In two Punjabi villages HIV/AIDS infection is now so high that the village councils have insisted on HIV tests before approving marriages. Unfortunately, the inadequacies of the local health infrastructure have interfered with the success of these screening processes and induced unwarranted panic in those truckers whose tests have shown false positive results. As a result, many young men have contemplated suicide.109 Only by traveling to more reliable and expensive facilities in larger cities can these false positives be overturned. These extra costs act as a disincentive for taking any tests at all. The growing resistance of truck drivers to HIV/AIDS testing prompted Yussuf Hamied to suggest that rather than issuing licenses to truck drivers good for twenty years, the licenses should be issued annually after drivers test HIV-negative.110 In the

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meantime, large truck depots such as the one at Tuqhluqabad (Delhi) are thriving centers for the dissemination of HIV/AIDS. The gap between earnings and the cost of sexual favors is huge: a twenty-one-year-old trucker typically makes about 10,000 rupees per month, and one visit to a prostitute costs less than 100 rupees.111 In 2003, some attempt was made to reach these and other men by encouraging Delhi’s barbers to give away free condoms. 112 Urbanization, economic growth, and domestic mobility have created dense concentrations of young, virile men who require the services of sex workers to assuage their feelings of loneliness and sexual frustration. The Indian sex industry has grown in response to this demand and has shown a willingness to reform its own practices in order to protect the health of workers and clients. But this voluntary reform process has been hindered by the Indian state, which has not merely failed to provide sufficient condoms, education, and medical attention to curtail HIV/AIDS but has on occasion intervened to control the industry in a manner that is both brutal and counterproductive. Victimization of the Transgender (Hijra and Kothi) Communities Another dimension of India’s sex industry is to be found among the hijra and kothi communities, who number in excess of one million.113 Together they demonstrate the complex ambiguity of gender in India, despite society’s tight compartmentalization into male and female roles. No scientific or bureaucratic concepts can describe the roles and identity of the hijra and kothi.114 As Shivanand Khan has noted, even the relatively neutral concept of men having sex with men is not accurate;115 nor is the general idea of men mingling and mucking around. Rather, sexual identity and rituals are more structured than the casualness implied by all these terms. According to the People’s Union for Civil Liberties, Karnataka (PUCL-K), the hijra have a “more fixed gender role . . . [whereas] kothis display a dual gender identity,” that is, playing alternating male and female roles. Typically, kothi prefer to play the role of passive receptors to the active partner or “panthi” or “girya” (both translate as “manly men”).116 As Khan noted, male and female roles are based not on identity or physical attributes but rather on behavior: the man is he who penetrates, and the not-man is he who receives.117 Transgender people typically marry, but many are also involved in the sex industry as a way of becoming financially secure. The hijra and kothi are among the most abused urban minorities in India, and their experiences provide dramatic examples of what Professor Upendra Baxi called the “microfascism of the local police state.”118 The murder of Chandini in December 2002 captured the layers of prejudice and discrimination against the hijra and kothi. Chandini was murdered by her husband, who claimed to have no knowledge of her transgender identity, despite evidence to the contrary. The husband and

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society more generally insisted that the hijra used their sexual ambiguity to capture men and exploit them; the hijra defense was that Chandini was murdered for her personal wealth. The police ignored the hijra view and her death was registered as a suicide, a verdict that was defended by the press despite the normal presumption that wives who burn to death inside their homes have probably been murdered.119 The violence of domestic life for many hijra and kothi is amplified by violence against them outside the home—especially for hijra and kothi who are feminine. The risks of sexual abuse at the hands of the police is high for all marginalized communities but especially so for transgender people, as the case studies in PUCL-K show.120 Knowing how much society despises and fears transgender people, the police are especially brutal, and sexual brutality typically occurs without resort to condoms. When transgender communities become involved in outreach work against the HIV/AIDS epidemic, they expose themselves to even more abuse because individuals caught with condoms are assumed to be soliciting clients. Aggregate data about the frequency of abuse are hard to find, but the Naz Foundation has suggested that a 2002 Bangladesh study is probably a good reflection of what happens elsewhere in South Asia. The study focused on 124 “feminine-identified males” and reported that a third had been raped by friends, almost half had been raped by police, and more than 60 percent had been harassed by police and thugs.121 Sexual assault and rape help to spread HIV/AIDS. As Khan noted, “forced sex is always unsafe and often results in serious physical injury such as a ruptured rectum, internal hemorrhage and so on.”122 What accounts for the suicidal behavior of those South Asian police who rape members of sexual minorities who may be carriers of HIV? Police awareness about HIV/AIDS has not been documented, but it is reasonable to assume that they know as little about risky sexual behavior as the next man. Social discrimination and police brutality reflect fundamental principles not only in India’s social hierarchy but also in the colonial laws that survive today and define prostitutes, gay, hijra, and transgender people as criminal classes. In 1897 the Criminal Tribes Act of 1871 was amended to widen the definition of a “criminal tribe” to include “all members of the male sex who admit themselves, or on medical inspection clearly appear, to be impotent.”123 The potency of this law remains unchanged today and is augmented by the Indian Penal Code (1860) that defines all sex other than that designed to produce babies as a criminal act.124 Section 377 criminalizes sodomy or “carnal intercourse against the order of nature.” The Indian Penal code and the Criminal Tribes Act are joined by a third law that works against the hijra and kothi— the 1986 amendment to the Immoral Traffic Prevention Act of 1956.125 Together these three constitute a cocktail of official intolerance that routinely denies the sexual ambiguity in Indian society. As PUCL-K pointed out, the official version of Indian culture is one in which you are either a man or a

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woman.126 Despite this, a growing number of transgender NGOs are being established, and more of them are becoming involved in working against the spread of HIV/AIDS in India. One list of sixty transgender associations included the names of nine specifically devoted to HIV/AIDS outreach work.127 The work of these NGOs remains difficult, not only because of police harassment but also because of the structure of the transgender sex industry that is complex and involves, among other things, distinctions between those who work on the streets or in private houses and those who work in bathhouses or hamam. The latter have been most resistant to joining the transgender movement.128 Victimization of HIV/AIDS Outreach Workers HIV/AIDS outreach workers in India represent many different groups, all of whom suffer from similar discrimination and abuse because an essential part of their task requires them to carry condoms and sexually explicit literature about HIV/AIDS transmission: the former are a symbol of prostitution in India, and the latter are regarded as pornographic. Outreach workers are also encouraged to contact the high-risk social groups—truck drivers, prostitutes, hijra, kothi, and others—and this also brings them into direct contact with “criminalized” communities that are already harassed and abused by the police. Some NGOs employ sex workers to reach the client groups that need to be encouraged to observe safe sex. SANGRAM (established in 1992) was one of the first Indian NGOs to employ prostitutes and transgender individuals as part of their outreach strategy. Given their expertise about the structure of the sex industry, these persons were rightly called “peer educators.”129 The official government of India policy on HIV/AIDS education explicitly depends on such outreach work, but despite this the state lacks the will or capacity to control the police who harass and abuse these “agents of change.”130 Evidence is now emerging to show that a fundamental problem is that the civil servants who are charged with oversight of the HIV/AIDS program under the auspices of NACO are themselves openly hostile to what they regard as perverse sexual minorities.131 The bureaucracy, in other words, is not likely to spring to the defense of any outreach workers involved in the fight against HIV/AIDS. In mid-2002, a report by Human Rights Watch based on interviews with HIV/AIDS workers employed by nineteen Indian NGOs concluded that “abuses [against workers] are frequent and widespread.”132 It documented the criminal level of police violence against outreach workers, including beatings, imprisonment, and extortion. One of the worst cases of abusing outreach workers occurred in July 2001 when Arif Jafar, director of Naz Foundation International, was arrested along with three colleagues following a police raid of his offices.133 The educational materials were said to be “obscene,” and the

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Naz Foundation and the Bharosa Trust were charged with organizing “sex rackets.” Arif Jafar happens to be a Muslim. Beyond the accusation that only Muslims practiced male-to-male sex and that Hindus did not, Jafar was said to be a security risk: the police alleged that he had links to Pakistan’s intelligence service and Kashmiri insurgents and was on a mission to pervert the sexual purity of the Hindus.134 In these paranoid accusations one can see the influence of the militant Hindu fundamentalism that has dominated Indian politics since 1998. Zafar and his colleagues from the Bharosa Trust were imprisoned for forty-seven days in terrible conditions despite the fact that both organizations were legitimate NGOs well known for their work against the HIV/AIDS epidemic.

Conclusion It is too cynical to suggest that the new government that came to power in May 2004 will make no difference to the capacity of India to respond adequately to the growing HIV/AIDS epidemic. Certainly, the coalition now led by the Indian National Congress Party (INC) has sought to distinguish its HIV/AIDS strategy from that of the previous BJP government: it has rejected abstinence as an appropriate response and has launched a new advertising program promoting the use of condoms.135 A World Bank study calculated that if 70 percent of the high-risk groups used condoms, the HIV/AIDS epidemic in India would stagnate; if 90 percent of these groups used condoms, the incidence of HIV/AIDS infection would begin to fall.136 Changes in government can make a difference. The declared secularism of the new Indian government also weakens public support for police harassment of religious minorities. The general political environment is also more conducive to legislative reform. For example, the Lawyers Collective in Mumbai has been lobbying for antidiscrimination legislation for some years, and there is now pressure from within the coalition for such reform to take place.137 At the same time the bureaucratic inertia, public policy failures, police violence, and social prejudices discussed earlier cannot be displaced overnight. A determined response to HIV/AIDS in India requires long-term and sustained commitment, more enlightened leadership at the very top government levels, and increased allocation of financial and human resources. Long-term and sustained commitment must begin with an immediate response to the most urgent situation facing people at risk of HIV/AIDS infection. India’s NGOs remain the best conduit for identifying who these people might be. Using modest resources, the Humsafar Trust, for example, has twenty-five workers who have counseled about 65,000 gay men during the last eight years, who tested 11,000 men in 1999 alone, and who currently maintain outreach work with seventy-six sex sites in the city of Mumbai.138 In

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2001–2002, Humsafar (which was established by three gay men in 1990) distributed more than 300,000 condoms to 43,000 clients—a laudable effort but still only tapping into about 12 percent of Mumbai city’s men who have sex with men.139 Beyond praise, NGOs such as the Humsafar Trust address the needs of one of India’s most at-risk populations, the gay community: in the early 1990s a joint study by the National Institute of Virology in Pune and the gay magazine Bombay Dost reported that about one-fifth of their homosexual respondents had tested positive for HIV.140 It is most significant that the respondents were all educated and middle class. Despite their good work, it is organizations such as Humsafar that are told by India’s highest civil servants that they are irrelevant, that the NGOs are to blame if they suffer from HIV/AIDS, and that it is not worth spending money on the HIV/AIDS campaign because scarce resources are needed for more worthy health causes.141 The emerging contest between Indian governments and police on the one hand and the country’s NGOs and minority lobbies on the other hand throws into sharp relief not only the factors that hinder the containment of HIV/AIDS but also the general problems with India’s political culture. In this contest, the question of left- and right-wing politics is irrelevant. As Ruth Vanita noted, “leftists, liberals and right-wingers joined hands in publicly attacking the controversial lesbian art film ‘Fire’ when it was released in India.”142 Nor is there a single political party at the national level that has ever championed the cause of public health in India. The horrors of the vasectomy campaign in the years 1975–1977 sacrificed the needs of public health in order to bolster the ego of Sanjay Gandhi, the Indian prime minister’s younger son, who had assumed the self-appointed mantel of providing the answer to India’s “overpopulation.” That public policy fiasco is today a part of a long historical continuity dating from the early years of the postcolonial period. Beyond the short-term policy changes that are needed to turn around the HIV/AIDS campaign in India, medium- and long-term strategies will depend critically on using the educational system to impart not only better knowledge about modern health risks and how to avoid them but also greater social tolerance. Better informed school children can help to change the attitudes of parents; at the same time, students who are empowered will be more likely to look after their own health in the context of India’s evolving sexual revolution. According to one survey by Humsafar in Mumbai, 36 percent of eighty male respondents reported that they had their first sexual experience when they were less than twelve years old.143 Educational reform is urgent given that forecasts by the National Intelligence Council of the US Central Intelligence Agency suggest that India will be the center of a second wave of a global HIV/AIDS epidemic, with about 20–25 million cases by 2010—double the current infection rate in India and more than double the number of HIV/AIDS infections predicted for each of the other four countries that form the eye of the global HIV/AIDS storm: China (10–15 million), Nigeria (10–15

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million), Ethiopia (7–10 million), and Russia (5–8 million).144 In Nigeria and Ethiopia, the second wave will also have a negative impact on military and strategic stability in Africa. In the case of India, its rise as a regional power will not be curtailed by this new epidemic.145 Rather, the socioeconomic costs will be borne mainly by the poor, who cannot afford any treatment. But as the HIV/AIDS epidemic digs in, it will increasingly have an impact on India’s middle classes and the elites. Nobody is immune from HIV/AIDS if they engage in risky sexual behavior—that is the message that the Indian public needs to absorb. Notes 1. A. K. Sen, “Development: Which Way Now?” The Economic Journal 93, no. 372 (1983): 757. 2. Upendra Baxi, “Foreword” to People’s Union for Civil Liberties, Karnataka [PUCL-K], Human Rights Violations Against the Transgender Community (Bangalore: People’s Union for Civil Liberties, Karnataka, 2003), 5. 3. Marika Vicziany, “Coercion in a Soft State: The Family Planning Program in India, Part 1: The Myth of Voluntarism,” Pacific Affairs 55, no. 3 (1983): 375–382; Marika Vicziany, “Coercion in a Soft State: The Family Planning Program in India, Part 2: The Sources of Coercion,” Pacific Affairs 55, no. 4 (1982–1983): 557–592. 4. Oliver Mendelsohn and Marika Vicziany, The Untouchables: Subordination, Poverty, and the State in Modern India (Cambridge: Cambridge University Press; New Delhi: Foundation Books, 1999), chap. 2. 5. In the 2004 national elections, the BSP emerged as India’s fourth largest political party. 6. Vicziany, “Coercion in a Soft State, Part 2,” 557. 7. UNAIDS, “2004 Report on the Global AIDS Epidemic—4th Global Report,” 2004, 23, 26. Available at http://www.unaids.org/bangkok2004/report.html. India’s estimated rate of HIV/AIDS infection is based on data from 384 sentinel surveillance sites, of which 165 are sexually transmitted disease (STD) clinics, 200 antenatal clinics, 14 injecting drug user (IDU) clinics, 2 sex worker sites, and 3 sites for men having sex with men. The infection rate among women attending antenatal clinics is used as a proxy for the infection rate in the general population. See Controller Auditor General [CAG], “Report of the CAG on the Union Government for the Year Ended March 2003,” National AIDS Control Program 2004, 11. Available at http://www.cagindia .org/reports/civil2004_3/contents.htm. 8. Mead Over et al., HIV/AIDS Treatment and Prevention in India: Modeling the Cost and Consequences (Washington, DC: World Bank, Human Development Network, 2004), 2. 9. Avni Amin, Risk, Morality, and Blame: A Critical Analysis of Government and US Donor Responses to HIV Infections Among Sex Workers in India (Washington, DC: Center for Health and Gender Equity, 2004), 3. 10. Human Rights Watch, Future Forsaken: Abuses Against Children Affected by HIV/AIDS in India, 2004, 19. Available at http://hrw.org/reports/2004/india0704. 11. Thirty-nine percent of intravenous drug users in Manipur had HIV/AIDS infections. Infections were also high among persons attending STD clinics (9.6 percent), but among antenatal women it was only 1.12 percent. Infection in Nagaland was

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less than this: 10.3 percent for IDUs, 2.42 percent for STD attendees, and 1.25 percent for women in antenatal clinics. See CAG, “Report of the CAG,” Annex III. 12. UNAIDS, “2004 Report,” 27, 32. 13. Amin, Risk, Morality, and Blame, 3. 14. Marika Vicziany, “HIV/AIDS in Maharashtra: Blood, Money, Bloodbanks and Technology Transfer,” Contemporary South Asia 10, no. 3 (2001): 381–414. 15. “Husbands Spread India’s HIV: Study,” November 13, 2003. Available at http//:www.CNN.com. 16. Over et al., HIV/AIDS Treatment and Prevention in India, 17. 17. The purity of the blood has improved thanks partly to foreign assistance such as that provided by the Australian Red Cross Blood Bank. See Vicziany, “HIV/AIDS in Maharashtra.” 18. The children’s parents had died of AIDS and their grandfather was demanding that discrimination against them be stopped. 19. “Help for Benson and Bency,” Global Aids India, India-AIDS eForum, The Australian AIDS Fund Incorporated, http://www.aids.net.au/aids-global-india-benson.htm, accessed November 26, 2006; Human Rights Watch, “Future Forsaken,” 77–80. 20. Human Rights Watch, “Future Forsaken,” 68. 21. “India: AIDS Fueled by Abuses Against Children; Children Affected by HIV/ AIDS Face Lethal Discrimination and Exploitation,” press release, 2004. Available at http://hrw.org/english/docs/2004/07/29/india9156_txt.html. 22. CAG, “Report of the CAG,” Executive Summary 1, sect. 5, 3, sec. 7.1, 5, sec. 7, 5. 23. Ibid., Executive Summary, 1. 24. Ibid., sec. 10.2, sec. 10.2.1, 19. In the 2002–2003 period, about 900 million free condoms were distributed plus 90 million under the social marketing programs. Unfortunately, free government condoms are also used in road building, as lubricants for weavers’ looms, as water balloons, and as caps for military guns. See Nivedita Pathak, “Condoms Oil Wheels of Industry,” BBC News, Hindi Service July 30, 2004. Available at http://www.news.bbc.co.uk; Rahul Bedi, “India’s Condoms Are Missing Their Target,” September 23, 2004, New Telegraph (reporting a study by King George Medical University, Lucknow). Available at http://www.telegraph.co.uk. 25. CAG, “Report of the CAG,” sect. 10.2.1, 20. Sixty percent of Punjabi vending machines were inoperative. 26. Ibid., sec. 10.2.4, 20. 27. Ibid., Executive Summary, 2. 28. Ibid., sec. 11, 25–26. 29. Information in this chapter about the experiences of Humsafar are based mainly on Ashok Rao Kavi, interview and correspondence with author, Mumbai, June–July 2006. 30. Members of the BJP’s New Delhi Agitational Committee, interview by author, Melbourne, Victoria, Australia, 1994. 31. Sanjoy Majumder, “Ignorance Hinders India’s HIV/AIDS Campaign, 2004.” Available at http://www.youandaids.org/Features/India2August2004.asp. 32. Paul Sachdev, “AIDS/HIV and University Students in Delhi, India: Knowledge, Beliefs, Attitudes, and Behaviors,” Social Work in Health Care 26, no. 4 (1998): 42. 33. Yvette Collymore, “Rooting out AIDS-Related Stigma and Discrimination,” Population Reference Bureau (October 2002). Available at http://www.prb.org. 34. UNAIDS, “2004 Report,” 27. 35. Human Rights Watch, “Future Forsaken,” 119–120.

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36. Human Rights Watch, “India: Epidemic of Abuse: Police Harassment of HIV/ AIDS Outreach Workers in India,” 2002, 8. Available at www.hrw.org/reports/2002/ india2/ (accessed April 22, 2005). This report noted that 65 percent of young male slum dwellers were confused about how to prevent the spread of HIV/AIDS infection. 37. CAG, “Report of the CAG,” sec. 10.2.2, 20. 38. The rest of this paragraph is drawn from Farah Baria et al., “AIDS: Striking Home,” India Today, March 15, 1997, 60–65. 39. Ibid., 61. 40. Ibid., 63. 41. Human Rights Watch, “Future Forsaken,” 113. 42. Ibid., 68, 73, 112. The resistance of Parent and Teacher Associations to HIV/ AIDS education was noted. 43. CAG, “Report of the CAG,” Executive Summary, 2; annex-XVII. 44. Human Rights Watch, “Future Forsaken,” 120. 45. Ibid. 46. Author’s fieldwork in Mumbai, December 1999. 47. Human Rights Watch, “Future Forsaken,” 114. 48. For example, a few years ago an invitation that I had received from a leading secondary school in New Delhi was withdrawn when I told them that I planned to speak about the importance of the condom in HIV/AIDS prevention. One state government decided to go against this trend in August 2004. The government of Punjab has developed a special HIV/AIDS curriculum in response to the rapid increase in AIDS mortality in Punjab: “Punjab Targets Teens in Anti-AIDS Campaign,” August 10, 2004. Available at WebINDIA123.comNews. 49. Over et al., HIV/AIDS Treatment and Prevention in India, 15, fig. 2.1. 50. Ibid., 36. 51. Tishani Doshi, “AIDS: Drug Wars,” The Hindu, July 11, 2004. Available at http://www.hindu.com. 52. CAG, “The Report of the CAG,” sec. 10.3.2, 22. 53. Ibid., 23. 54. Amin, Risk, Morality, and Blame, 16; Human Rights Watch, “Future Forsaken,” 47. 55. There are few exceptions to this dismal scenario, but Tambaram hospital in Chennai is one of the good examples of what could be done. The Tambaram hospital had 10,000 in-house patients and 120,000 outpatients with HIV/AIDS in 2003. See “HIV/ AIDS: India’s Many Epidemics,” Science 304, April 23, 2004. Available at http//:www .sciencemag.org. 56. Amin, Risk, Morality, and Blame, 11. The CAG report also noted that of the 3.3 million condoms needed by brothel workers in Mumbai, in a good year fewer than 75 percent were supplied and in a bad year fewer than 43 percent: CAG, “Report of the CAG,” sec. 10.2.1, 20. 57. Over et al., HIV/AIDS Treatment and Prevention in India, 71. 58. Ibid., xiv. 59. Ibid., 69–70, and Figure 4.7. 60. Human Rights Watch, “Future Forsaken,” 12. 61. Ibid., 17. 62. Ibid., 124. 63. National Intelligence Council, “The Next Wave of HIV/AIDS: Nigeria, Ethiopia, Russia, India, and China” Intelligence Community Assessment, 2002, 49. Available at http://www.cia.gov/nic/special_nextwaveHIV.html.

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64. Richard Gerster, “People Before Patents. The Success Story of the Indian Pharmaceutical Industry.” Available at http://www.gersterconsulting.ch/docs/India_ Pharma_Success_Story.pdf. 65. The balance between preventive and curative strategies could change if cheap alternatives to the existing ARVs emerge. For example, Professor Roger Short has demonstrated that lemon and lime juice can act as effective microbicides against the HIV virus: “Clinical Trials Announced into Efficacy of Limes (or Lemons) as Nature’s Microbicide to Combat HIV/AIDS,” May 28, 2004. Available at http://www.aids.net .au/lemons-news-thai-aus.html. The development of a rectal microbicide has been advocated by the Naz Foundation of India: Naz Foundation International, Annual Report for 2003–2004, Planning for the Future, 2003, 13. Available at http://www.nfi .net/NFI%20Publications/Annual%20Reports/aAR2003-4.pdf. 66. Human Rights Watch, “Future Forsaken,” 133. 67. Ibid. 58–59, 137–138. 68. Ibid., 93–94. 69. Ibid., 42. 70. Ibid., 132–136. 71. Ibid., 46. 72. Ibid., 42. 73. Ibid., 43. 74. Ibid., 65. 75. For a critique of Gunnar Myrdal’s definition of India as a “soft state” as originally formulated in Myrdal, Asian Drama: An Inquiry into the Poverty of Nations, vol. 3 (New York: Pantheon, 1968), 2157–2158, see Vicziany, “Coercion in a Soft State: Part 1”; Vicziany, “Coercion in a Soft State: Part 2.” 76. See Mendelsohn and Vicziany, The Untouchables, 85. 77. Ashok Rao Kavi, “Why We Need to Look into Sexuality Issues,” Humsafar Trust Mumbai. Available at http://webbingsystems.com/humsafar/. 78. The gay movement in India is largely an urban phenomenon that gives gay men the choice of not marrying. Ashok Rao Kavi, interview. 79. Amin, Risk, Morality, and Blame, 9. 80. Human Rights Watch, “Future Forsaken,” 124. 81. Amin, Risk, Morality, and Blame, 8, citing the work of L. Murthy, “Illegal Sex Business Adds to National Incomes,” IPS News Agency, New Delhi, 1999; and M. Nag, “Sexual Behaviour and AIDS in India: State-of-the-Art,” Indian Journal of Social Work 55, no. 4 (1994): 503–546. 82. Ibid., 9. 83. The following account is based on Human Rights Watch, “India: Epidemic of Abuse.” Goa’s HIV/AIDS prevalence rate in 2002 was 1.38 percent for women attending antenatal clinics, 24 percent for sex workers, and 11 percent for people attending STD clinics. See CAG, “Report of the CAG,” annex III. 84. Amin, Risk, Morality, and Blame, 6. 85. Joanne Csete, director HIV/AIDS program, Human Rights Watch, letter to the Honorable Chief Minister Manohar Parrikar, State of Goa, July 6, 2004. Available at http://www. hrw.org/english/docs/2004/07/06/india9006.html. 86. “A Sari State—No Girl Power in India,” POZ. Available at http://www.poz .com/articles/228_1633.shtml. 87. Madhu Bala Nath, “Women’s Health and HIV: Experience from a Sex Worker’ Project in Calcutta,” Gender and Development 8, no. 1 (March 2000): 104. 88. Amin, Risk Morality, and Blame, 10.

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89. Ibid. 90. CAG, “Report of the CAG,” sec. 10.2.3, 20. ORG is one of India’s bestknown research consultancy groups. 91. See figure 1 in Malcolm Potts and Roger V. Short, “Condoms for the Prevention of HIV Transmission: Cultural Dimensions,” AIDS 3, supplement 1 (1989): S261. 92. Human Rights Watch, “Future Forsaken,” 89–90, re the case of Vinaya S. 93. Members of the BJP’s New Delhi Agitational Committee, interview. 94. Human Rights Watch, “Future Forsaken,” 86. 95. Ibid., 130–131. 96. Ibid., 89. 97. Ibid., 135. 98. Population Foundation of India and Population Reference Bureau, HIV/ AIDS in India, 2003, 27. Available at http://hivinsite.ucsf.edu/global?page=cr08-in-00. 99. Ibid., 28. 100. “Prasad Chikitsa Rolls out HIV/AIDS Program,” 2004. Available at http:// www.prasad.org/program_13_health_care_prevention_aids.html. 101. Over et al, HIV/AIDS Treatment and Prevention in India,” 13, table 2.2. 102. See Vicziany, “HIV/AIDS in India.” 103. UNAIDS, “2004 Report,” 27. 104. Human Rights Watch, “India: Epidemic of Abuse,” 9. 105. K. S. Rao et al., “Sexual Lifestyle of Long Distance Lorry Drivers in India: Questionnaire Survey,” 1998. Available at http://www.pubmedcentral.nih.gov/ articlerender.fcgi?artid=27695. 106. Unless otherwise stated, the rest of this paragraph draws on Annmaria Christensen, “Truckers Carry Dangerous Cargo,” Notes from the Field, AIDSLink 73 (May 1, 2002), 6. 107. World Bank, “Highway to HIV/AIDS Prevention,” November 25, 2003. Available at http://www.worldbank.org; World Health Organization, “HIV/AIDS— Trucker’s Project: Delhi Gallery,” 2004. Available at http://www.who.int/multimedia/ indiaweb. 108. In 2002 Punjab reported an infection rate of 0.49 percent among women attending antenatal clinics and 1.60 percent among persons attending STD clinics. See CAG, “Report of the CAG,” annex III. 109. Puran Singh 2002, “Communities Rally Around HIV/AIDS Widows,” Inter Press Service News Agency, December 31, 2002. Available at http://www.ipsnews.net/ intern.asp?idnews=14890. 110. Tishani Doshi’s interview with Dr. Yussuf Hamied, chairman of Cipla, “AIDS: Drug Wars,” The Hindu, July 11, 2004. Available at http://www.hindu.com/mag. 111. Luke Harding, “Indian Truck Drivers Who Carry More Than Cargo,” November 11, 2002, CDC News Updates. Available at http://www.thebody.com/cdc/news_ updates_ archive/nov15_02/india_drivers_aids.html. 112. Agence France-Presse, “Barbers Hand out Condoms to Prevent India’s AIDS,” 2003. Available at http//:www.HindustanTimes.Com. 113. There are about one million hijra in India: Lynn Conway, “Reflections on the PUCL Report,” People’s Union for Civil Liberties, India, June 6, 2004. Available at http://ai.eecs.umich.edu/people/conway/TS/PUCL/PUCL%20Report.htm. According to Humsafar, about 85 percent of the hijra are not castrated (see Kavi, “Why We Need to Look into Sexuality Issues”). The numbers of kothi are impossible to estimate because not all kothi are visible to the public. Many feminine men prefer to be pene-

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trated by men but do not outwardly behave so. See Shivananda Khan, “MSM and HIV/AIDS in India,” January 2004, 4. Available at http//:www.nfi.net. 114. Sexual identity and behavior are very complex in India but ultimately not that different from the West, as Khan has reminded us in his excellent essay reviewing the work of Marjorie Garber on the modern meaning of Kinsey’s work on US bisexuality: Shivananda Khan, “Vice Versa,” Pukaar 36, 2002, 3–4, 24. Available at http//: www.nfi.net/NFI%20Publications/Pukaar/2002/Janaury2002.pdf. 115. Shivananda Khan, “Eyes Wide Shut: Masculinities, Sexualities, and Behavior: Male-to-male Sex in South Asia,” Homosexualities, HIV/AIDS, and HIVO: Why? October 21, 2004, 11. Available at www.nfi.net/NFI%20Publications/powerpoints/ EyesWideShut.ppt. 116. PUCL-K, Human Rights Violations, 20. 117. Khan, “Eyes Wide Shut,” 11. 118. PUCL-K, Human Rights Violations, 5. 119. Ibid., 57–59. 120. Ibid., 25–28, for example, records the brutalization of Sachin, who was twenty-three at the time of PUCL-K’s report. 121. Khan, “Eyes Wide Shut,” 19–20. In these cases “rape” covers both rape and sexual assault. 122. Khan, “MSM and HIV/AIDS in India,” 11. 123. PUCL-K, Human Rights Violations, 45. 124. Ibid., 47. 125. Ibid., 11, 29, 43, 48–49. 126. Ibid., 51, citing the case of one hijra who had been elected the mayor of Katni on the basis that it was a seat reserved for women. She was disqualified on the basis that a male hijra cannot be a woman. 127. Ibid., 82–88. The ones that identify themselves as working against the HIV/AIDS epidemic are Jagruthi in Bangalore; Lawyers Collective (HIV/AIDS unit) and Udaan in Mumbai; AIDS Bhedbhav Virodhi Andolan, Naz Foundation India Trust, and Lawyers Collective (HIV/AIDS Unit) in New Delhi; AAKASH (Advocacy for AIDS, Knowledge, and Sensible Health) in Orissa; Social Welfare Association for Men (SWAM) and South India AIDS Action Program (SIAAP) in Chennai. 128. Ibid., 62–63. 129. Human Rights Watch, “India: Epidemic of Abuse,” 11. 130. “AIDS in India: Money Won’t Solve Crisis—Rising Violence Against AIDS-Affected People,” 2002. Available at http://hrw.org/press/2002/11/india11302 .html. 131. Ashok Rao Kavi, interview. 132. Human Rights Watch, “India: Epidemic of Abuse,” 3. See also Amin, Risk, Morality, and Blame, 11–12. 133. This account of the case is based on Human Rights Watch, “India: Epidemic of Abuse,” 19–21. 134. Ibid., 20. 135. “Indian AIDS Epidemic,” July 26, 2003. Available at TBRNews.com. Sonia Gandhi (leader of the INC) also attended the 2004 AIDS Conference in Bangkok. 136. “Only Condom Use Could Check Spread of AIDS,” Deccan Herald, August 14, 2004. 137. For example, the new minister of state for science and technology (ocean development) has called on the minister for health to legislate against discrimination, breaches of confidentiality, and other factors that victimize those suspected of carry-

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ing HIV/AIDS: UNAIDS, “Statement of Shri Kapil Sibal, Minister of State,” 2004. Available at http://www.unaids.org.in. 138. Ashok Rao Kavi, interview; Humsafar Trust Mumbai. Available at http:// webbingsystems.com/humsafar/. 139. Humsafar Trust Mumbai, “Outreach.” Available at http://webbingsystems .com/humsafar/. 140. Khan, “MSM and HIV/AIDS in India,” 2. 141. Kavi, “Why We Need to Look into Sexuality Issues.” 142. Raj Ayyar, “Queering India with Ruth Vanita: An Interview,” Namaste Bazaar, 2004. Available at http://www.namaste-bazaar.com/generic.html?pid=45. 143. The study did not identify the nature of the partners or the circumstances in which this first sexual experience occurred. Humsafar Trust Mumbai. Available at http://webbingsystems.com/humsafar/. 144. National Intelligence Council, “The Next Wave of HIV/AIDS,” 3, 8, 10–11. 145. Ibid., 5; Marika Vicziany, “The Indian Economy in the Twenty-first Century: The Tough Questions that Just Won’t Go Away,” South Asia 28, no. 2 (August 2005): 211–232.

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7 Law Enforcement, Public Health, and HIV/AIDS in China Susanne Y.P. Choi and Roman David

The pandemic of HIV/AIDS has rapidly become one of the major issues of public health concern in China. The number of reported HIV infections there increased at an average rate of 30 percent per year between 1995 and 2000.1 In 2001, the increase in the reported number of HIV infections was 58 percent.2 A report published jointly by the Chinese Ministry of Health, UNAIDS, and WHO estimated that 650,000 people were living with HIV in China, and among them 75,000 had developed AIDS.3 It is important to note that the reported figure of AIDS cases is the tip of the iceberg because of massive underreporting, particularly in rural areas. The reticence of local governments to report actual cases and the reluctance of individuals to come forward owing to discrimination were the major reasons of underreporting. Although exact figures are difficult to come by, the UNAIDS has suggested that if the epidemic continues unabated, the number of HIV-infected people will reach between 10 and 20 million by 2010.4 Unlike sub-Saharan Africa, where the major route of transmission is heterosexual intercourse, the sharing of contaminated injection equipment by intravenous drug users accounted for 70 percent of all HIV infections in China in 2002.5 Commercial plasma donors infected through unsafe blood collection accounted for around 10 percent of all HIV infections in 2002, and heterosexual unsafe sex, mainly between sex workers and their clients, accounted for another 8 percent of all HIV infections in 2002.6 Similar to the situation in many other countries, the response of the Chinese government to the epidemic has been slow.7 Before 1989, the small number of HIV infections in China was mainly found among foreigners and overseas Chinese in coastal cities.8 Although in 1989 HIV infection had been identified among forty drug users in southern Yunnan,9 it was still seen as a consequence of contact with the West. Meanwhile, the epidemic spread quickly to other provinces beyond Yunnan.10 By 1998, HIV infection had been reported in all 137

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thirty-one provinces as well as in municipalities and autonomous regions.11 It was then that the State Council of the Chinese government published the first action plan to combat HIV/AIDS, the Medium and Long Term Plan for AIDS Prevention and Control.12 A new plan, called the China Plan for Action to Contain, Prevent, and Control HIV/AIDS (2001–2005), was published in 2001. Given the fact that intravenous drug users (IDUs) who shared needles accounted for more than two-thirds of HIV cases in China,13 and in view of the increases in the heterosexual transmission of HIV there, both plans emphasized the importance of prevention and strict law enforcement. Combating HIV transmission related to intravenous drug use and sex work was characterized by intensive police crackdowns and institutionalization of drug users and sex workers. This chapter discusses the complex impact of these repressive policies on the lives of individual drug users and sex workers. Research in other countries shows that preventive and repressive policies may not always be compatible. Our study of Sichuan Province supports this conclusion by showing that the HIV policy in China, which combines repressive measures against drug use and sex work, on the one hand, with HIV prevention efforts, on the other, carries inherent limitations. The repressive polices are ineffective, and their continuing dominance undermines preventive policies. We therefore contend that even increasing human and material resources to combat the HIV epidemic in China would not produce adequate results unless the state is able (and willing) to substantially modify its repressive policies. This chapter specifically examines the negative consequences of repressive tactics to combat drug use and sex work on the ability of IDUs and sex workers to practice HIV/AIDS prevention through harm reduction, in particular reducing their sharing of needles and increasing their use of condoms. In order to substantiate our claims, we use ethnographic data collected from field observations during 2003 and 2004, which included thirty-two in-depth interviews (five male drug users, ten female drug users who exchanged sex for money, sixteen sex workers, and a government official) and seven focus group sessions (two groups of sex workers, two groups of drug users of mixed sex, one group of male drug users of ethnic minority origin, and two groups of outreach workers) in two cities in Sichuan Province.

Repression Versus Prevention One of the fundamental policy dilemmas in dealing with the modes of HIV transmission is that of repression versus prevention. Sharing of contaminated needles among intravenous drug users constitutes one of the major modes of HIV transmission globally, and the use of repressive measures is one of the most common policies employed to address the problem of drug use. Zero-

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tolerance policies, drug prohibitions, searches and surveillance of suspected drug users, and police crackdowns are typical examples of such repressive measures by both democratic and authoritarian regimes. The United States, Australia, South Africa, and other democracies have from time to time adopted repressive approaches that are typical of less democratic states such as Thailand, Malaysia, and Indonesia. The work of law enforcement agencies frequently yields unintended consequences, however, that make the situation worse. The lessons drawn from the socially damaging consequences of prohibition campaigns, whether conducted in the United States or the former Soviet Union, are quickly forgotten and repeated again in other countries. The vast majority of research acknowledges the failures of zero-tolerance policies elsewhere. Studies that assessed the impact of police crackdowns on street drug markets in Australia concluded that their positive impact is superficial and temporary. Police crackdowns lead to the reconfiguration of the drug scene and its transfer to nearby areas, an increase of violence, and a decrease of safer drug-injection practices, thereby having a detrimental impact on public health.14 A study that examined national data from the United States regarding the application of criminal penalties and adverse health outcomes (between 1972 and 1997) linked drug-related morbidity and mortality to the consequences of prohibition-oriented drug policies and their unequal application among racial groups.15 In contrast, prevention programs based on the notion of harm reduction are well received by the academic community. In contrast to zero-tolerance polices that insist on abstinence, proponents of harm reduction recognize that abstinence may not be a realistic goal for some, especially in the short term. Taking a pragmatic approach, harm-reduction advocates aim to minimize the adverse consequences of drug use, including the spread of HIV/AIDS among IDUs caused by risky injection practices.16 Harm-reduction programs that explicitly target IDUs and emphasize reducing (instead of eliminating) the harms associated with drug injection have been considered one of the most outstanding successes in HIV prevention.17 Syringe-exchange programs promoted by the Australian government, but opposed by the US government, were argued to be one of the major factors that accounted for lower HIV infection among drug users in Sidney, Australia, compared to their counterparts in Brooklyn, New York.18 It is also well documented that repressive policies effectively undermine preventive policies. Syringe exchange programs are one of the most effective methods of preventing HIV infections caused by injection drug use.19 Despite this fact, they are illegal in most parts of the United States, and research shows that where such programs have been launched, police actions and the threat of police actions effectively undermined their operation.20 As Koester found, a “legal mandate combines with other aspects of law enforcement to discourage street-based drug users from carrying syringes, particularly when they are in

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the process of obtaining drugs. The result is that drug injectors are least likely to have syringes when they need them most.”21 Frequent police searches and constant monitoring of public spaces also discourage drug users from carrying clean injection equipment.22 This brief review suggests that repressive policies have largely been proved to be an inadequate method for dealing with the spread of HIV/AIDS. Moreover, when they interact, repressive policies tend to undermine preventive policies, wasting resources and posing a great risk to public health. The remainder of this chapter discusses the use of repressive policies to control drug use and sex work in China and the tension between those repressive policies and harm-reduction measures for HIV prevention.

Prevention and Prohibition in China Drug use and sex work were entwined with the discourses of national weakness and humiliation by colonial powers in contemporary Chinese history. The Communist Party claimed that it had eradicated both of those “social evils” in the 1950s. Yet the use of narcotics and prostitution have resurged and developed rapidly since economic reforms launched in the late 1970s. The number of registered drug users in the country as a whole increased more than twelve times (from 70,000 to 860,000) since 1993,23 reaching one million by 2004.24 More than 95 percent of heroin and opium entered the country from the “golden triangle,” the poppy-growing border area of Myanmar, Laos, and Thailand.25 Drug users heightened their HIV risk by shifting from smoking or snorting to injecting in increasing numbers since the mid-1980s.26 Needle sharing is a common practice among intravenous drug users. The national sentinel system reported that the rates of needle sharing in the provinces of Yunnan, Xinjiang, Guangxi, Hunan, Hubei, and Jiangxi were over 60 percent between 1995 and 1998.27 The core response of the Chinese government to a growing problem of drug use is to toughen up against drug supply and demand.28 Such drugrelated crimes as smuggling, trafficking, transporting, and manufacturing drugs; illegal possession of drugs; and harboring, transferring, and concealing drugs are severely punished. Drug users arrested by the police may be sent to compulsory rehabilitation centers for a period of up to six months or to labor camps for reeducation for up to two years. At the end of 1999, China had a total of 746 compulsory drug-user rehabilitation centers and 168 treatment and reeducation-through-labor centers.29 Turning to sex workers, commercial sex is widespread in contemporary China. According to conservative estimates, there are 6 million prostitutes in China.30 Venues where commercial sex takes place, such as hair/beauty salons, massage bars, karaoke television halls, sauna baths, and night clubs, have mushroomed in coastal cities and provincial towns. Adding to this kalei-

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doscope of commercial sex scenes is an army of streetwalkers who solicit business on the street and conduct their transactions in guest houses or hostels. A considerable number of sex workers are female migrants from rural areas who turn to sex work as a transitory strategy for survival or for achieving other life goals.31 Some are female drug users who take up prostitution to support their drug habit. In a study conducted in Guizhou Province, 30 percent of drug users were women, and among them a considerable number had engaged in commercial sex.32 Some 21 percent of female IDUs surveyed in Yunnan Province reported selling sex for money or drugs in the previous month.33 Similar to drug use, selling and purchasing of sexual services is prohibited by law and subject to severe punishment in China.34 Venues for commercial sex are closed down by police raids in periodic “strike-hard” anti-prostitution campaigns (saohuang).35 The Administrative Punishment Act, which is the responsibility of the Public Security Bureau, provides for administrative detention of sellers and purchasers of sexual services for up to fifteen days, a fine, and detention for up to four years in reeducation-through-labor centers.36 Yet usually the owners of establishments that sell sex and the customers of sex workers get off with a fine, whereas the sex workers themselves are sent to reeducation centers for between six months and two years. Some repeat offenders may be sent to the reform-through-labor centers. Data on the number of sex workers detained in these centers are difficult to come by, but according to one report, 560,000 people were held in reeducation centers for sex workers in 1991.37 Thus the law creates inequalities among owners, purchasers, and sellers of sexual services by heavily imposing the blame and legal punishment on the latter.38 The threat of HIV/AIDS prompted the Chinese government to further increase the punishment of sex work by subjecting those who “knowingly” sell or buy sex while infected with any sexually transmitted diseases (STDs) to five years in prison, criminal detention, or public surveillance.39 Yet again, the legal punishment lies heavily on sex workers, because most customers of sex workers get off with a fine, and few will ever be imprisoned for transmitting an STD.40 China’s prohibitionist approach against drug use and sex work has been criticized by human rights activists, who have argued that compulsory rehabilitation centers, reeducation centers for sex workers, and reform-throughlabor centers are completely within the control of the police, who can send people to camps for up to four years without a trial. The conditions of these centers are criticized as being indistinguishable from jails,41 a claim that is corroborated by data from our interviews (see below). Although repressive policies constitute the core of state tactics against drug use and commercial sex, the rapid spread of HIV/AIDS among intravenous drug users, and the concern that HIV may increasingly be transmitted through

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heterosexual intercourse between sex workers and their clients, have prompted the government to adopt some harm-reduction measures.42 With respect to drug use, the introduction of methadone maintenance programs represents a pathbreaking move in this direction. Widely practiced in many parts of the world (including Hong Kong, a special administrative region of China), methadone programs are considered an effective harm-reduction strategy in the prevention of HIV/AIDS, as drug users stabilized on methadone can lead a more or less normal life and continue to be productive members of the community.43 In November 2004, China announced that 1,000 methadone clinics would be established within five years for the prevention of the spread of HIV/AIDS among drug addicts. In 2005, 128 methadone clinics were established.44 In some provinces another harm-reduction measure—needle exchange— has also been allowed to operate by semiofficial agencies. By 2005, ninetyone needle- and syringe-exchange pilot sites had been established.45 These programs are generally built on a network of peer educators, who are drug users themselves and act as distributors of clean needles and collectors of used needles in exchange for a small fee each month. Yet in comparison with methadone maintenance programs, which have garnered strong support of the central government and will be widely practiced by most local governments, needle and syringe exchange remains a sporadic, uninstitutionalized, and largely small-scale initiative undertaken in individual provinces. At times, it appears that the central government is just turning a blind eye to let such programs occur because of local realities of uncontrollable outbursts of HIV transmission among intravenous drug users. The success of needle-exchange programs is therefore dependent on the ability of local public health officials and NGOs in securing collaboration from the police, who must promise to refrain from arresting peer educators and participants in needle-exchange programs for carrying needles. With respect to sex work, use of condoms among commercial sex workers and their clients is generally low in China, with the exception of sex workers who provide services for overseas clients.46 Surveillance studies between 1995 and 1998 estimated that the percentages of commercial sex workers who had never used condoms ranged from 60 percent to 90 percent in Gaungxi, Xinjiang, Shaanxi, and Fujian provinces.47 A study in Panzhihua City, which is adjacent to the field site of our study, found that nearly half of the mine workers surveyed had had sex with sex workers in the preceding three months. Among them, only 7 percent had used a condom in the most recent sexual transaction.48 Two prevention measures aimed at reducing HIV transmission among sex workers and their clients have been taken in China. The first measure was a 1998 regulation by the state prohibiting police from using the possession of condoms as evidence for conviction. Before the enforcement of this regulation, the fear of arrest often prevented commercial sex workers from carrying

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condoms when waiting for customers. Even after the announcement of this regulation, some local policemen continued to arrest women carrying condoms and use condom possession as “proof” of prostitution. The second measure is the distribution of free condoms in hotels and entertainment venues. Social marketing of condoms to commercial sex workers includes distribution of free condoms and education about their function in preventing sexually transmitted diseases, including HIV/AIDS and Hepatitis B and C, and the proper way of using a condom. Some projects also teach sex workers the skill of negotiating condom use with customers.49 Education and training are essential because many commercial sex workers, in particular those from rural areas and those with low education, view condoms mainly as a means of birth control and do not know how to properly use them. Many also lack the skill to negotiate safe sex with reluctant customers. For example, 30 percent of streetwalkers surveyed in 2002 in Sichuan Province reported failed attempts to convince their clients to use condoms.50

Negative Consequences of the Prohibitionist Approach: Undermining HIV/AIDS Prevention Efforts Among IDUs in Sichuan Province The pattern of HIV transmission in Sichuan Province could be considered typical in China in the sense that the sharing of contaminated injection equipment constitutes the major cause of HIV transmission. HIV infection among IDUs in Sichuan is growing at an exponential rate, with an average annual growth rate of 97.23 percent between 1991 and 2003. The province had 67,000 registered drug users and recorded 4,333 cases of HIV infection by 2004. Over 95 percent of the infections were caused by the sharing of contaminated needles among IDUs, and around 5 percent were through sexual contact.51 Previous studies found that 60 percent of IDUs in Sichuan Province shared needles and syringes.52 Another study found that one-third of IDUs had shared needles, syringes, and cotton in the preceding three months, and this sharing of paraphernalia was in turn found to be significantly associated with HIV infection.53 Consistent with overall drug-control policy in China, police arrest and detention in compulsory rehabilitation centers and reform-through-labor centers are the major tactics the police employ to control the local drug scene. In a community-based survey of 200 intravenous drug users conducted in 2004, 24 percent of the respondents had been detained in compulsory rehabilitation centers or reform-through-labor centers in the year prior to the survey. Moreover, 95 percent of respondents had been detained in these centers in the past.54 The people we interviewed for this study unanimously agreed that these centers are ineffective in yielding any long-term behavioral change. Official estimation put the relapse rate after forced rehabilitation at between

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60 and 100 percent. Indeed, according to our respondents, the relapse rate is 100 percent. As they told us: People rebel against forced detoxification. They put us into a small room [and] treat us as beings lesser than pigs and dogs [and] confine our eating, drinking, and excreting to the same room. The three months we are locked are a total waste of time. We take more drugs [once released] to catch up for the three months lost. One hundred people who were sent to compulsory rehabilitation centers; one hundred people relapsed. They sent me to a reeducation-through-labor center for two years. I took drugs again on the day they released me. It was a gesture of rebellion, I guess. It is a vicious cycle. Taking drugs, being arrested, [being] reformed through labor centers for two or three years, [being] released back to society, take drugs again, being arrested, reformed . . . it is a cycle.

Although the bad living conditions in compulsory rehabilitation centers and reform-through-labor centers and the humiliation of being detained may partly account for the high relapse rates of ex-detainees, as illustrated above, a more fundamental problem is that these centers only concern themselves with the physical dependence on drugs. Most respondents make a distinction between physical and psychological drug dependence, or dukyin and xinyin. All conceded that, whereas dukyin is relatively easy to get rid of, xinyin is very difficult to change. Interviewer: What is the major obstacle in rehabilitation? Respondent A: Dukyin [the physical craving] is easy to get rid of, but xinyin [the psychological craving] is very difficult to change. . . . When you see your friends taking drugs, you lose control of yourself. Respondent B: Successful rehabilitation is all about the environment. . . . If no drug friends visit you, if all of your friends stop using drugs, then you will stop.

It is not only that compulsory rehabilitation centers and reform-throughlabor centers do not provide an environment conducive to long-term change of xinyin. The act of arrest and detention further marginalizes drug users by revealing their drug-user status to family, friends, and neighbors. Social marginalization and stigmatization in turn diminish the chance of rehabilitated drug users’ being reintegrated into society. The people we talked to described the situation this way:

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If you were in forced rehabilitation centers, all government work units and the police have your file. When you apply for a job, your employer will want to check your file. You will never find a job. People say, “take drugs for one day, take drugs for life.” Society thinks that we drug users are unable to change. . . . People regard drug users as . . . beggars, as thieves.

Ostracism by society pushes drug users to rely on their only available source of support—other drug users—and it perpetuates the vicious cycle of drug taking, forced rehabilitation, relapse, and forced rehabilitation yet again, as described above. The policy of forced rehabilitation also indirectly creates difficulties for harm-reduction work. A needle-exchange program sponsored by international donors was established in the field site in 2002. Interviews with IDUs suggested that the overall evaluation of this program was very positive. It was hailed as useful in increasing access to clean needles, particularly at night and in cases of emergency created by needle blockage or damage. Yet, during the research period, at least three of the needle-exchange program’s peer educators were arrested by the police and detained either at compulsory rehabilitation centers or reform-through-labor centers. These arrests seriously interrupted the functioning of the needleexchange program and showed the degree of tension between the police and public health officials at the local level. The police are under pressure to meet arrest quotas, particularly during periods of high-profile antidrug campaigns, whereas the main concern of public health officials is HIV/AIDS prevention. The policy of forced rehabilitation not only is ineffective in generating long-term behavioral change, as it inhibits prevention work, but also directly undermines the efforts of drug users to reduce needle sharing. Data from a 2002 community-based survey of 200 IDUs in Sichuan Province suggested that, following intervention work, most drug users have a good understanding of HIV/AIDS. Among the 200 survey respondents, 35 percent had correctly answered all twelve questions asked regarding routes of HIV/AIDS transmission and methods of prevention, and on average respondents correctly answered ten of the questions.55 Despite this high level of knowledge and the general concern about the risk of HIV/AIDS, however, a considerable number of IDUs (over 25 percent) still shared needles.56 With the exception of sharing between intimate sexual partners, for whom needle sharing inevitably conveys a sense of intimacy and trust, needle sharing among drug users is generally caused by their inability to access clean needles, which itself is caused by a variety of reasons, such as the urgent pain of craving, the urge to get “high” during nighttime, or the unexpected damage or blockage of a needle. For example, two of the IDUs we interviewed said this:

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I shared with another person once. It was too late to buy a new needle. Sometimes the syringe is blocked by blood clots. Why share needles? At night it is impossible to buy needles. . . . If there is only one needle, we rinse it with water, or burn it under a lighter and pass it [on].

In addition to the cost of needles, fear of being arrested by the police is another reason drug users are prevented from purchasing spare needles to meet their urgent nighttime cravings or in cases of damage or blockage to the needles they are using. Two of the people we encountered told us this: Why can’t we buy more spare needles? First, it is the economic reason: We don’t have money. Plus we are frightened of the police. You carry so many needles. How about if the police stop you and search your body? If they find the needles and ask you, “What’s that?” You can’t explain [it] to them. It is not safe to carry needles. If the police find needles, they will send us to reform-through-labor centers in remote areas. They regard needles as providing the clearest evidence that justifies sending you to reform-throughlabor centers.

The upshot is that repressive policies, notably by the police, have undermined efforts to reduce HIV transmission among intravenous drug users in Sichuan Province. There are similar negative impacts on attempts to address the spread of the virus among sex workers, as the next sections shows.

Negative Consequences of a Prohibitionist Approach: Undermining Prevention Efforts Among Sex Workers Turning to sex work, we have found that in Sichuan Province, police crackdowns and the policy of reeducation-through-labor centers for sex workers undermine the ability of sex workers to increase their use of condoms when they are with casual partners. As shown by research in other Chinese cities, the income of the people we interviewed varied considerably, with sex workers employed at beauty salons and hair salons and streetwalkers constituting the most disadvantaged group with respect to their socioeconomic background and income (they are defined by local outreach workers as lower-class sex workers) and with respect to the socioeconomic background of their customers. The majority of these sex workers have lower–secondary school education. Some work as waitresses in eateries, or they were unskilled workers in factories before engaging in sex work. Twenty-five of the sex workers we interviewed (96 percent) were nonlocals from rural areas, and two of them (7

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percent) were ethnic minorities. They charge from 10 to 150 ¥ (roughly US$1 to $18) for each transaction, depending on the age, appearance, and drug-use status of the sex worker as well as the venue where sexual services are provided. Their customers are from all walks of life, but all are Chinese nationals. The customers of streetwalkers, who charge between 10 and 50 ¥ per transaction, are inevitably manual laborers, with a considerable number of them ethnic minorities, migrant workers, and miners. These customers are singled out by respondents as the most unwilling to use condoms: Most of those customers who refuse to use a condom are from villages. . . . They know nothing about AIDS. . . . The City folks use [condoms]. . . . It is related to education [wenhua]. One of every ten customers refuses to use a condom. Most of these are the Yi minority. . . . I don’t think this is because they are minorities. I think they don’t have education. They don’t know [about AIDS]. They don’t mind whether they will get any diseases.

A considerable number of these “lower-class” sex workers are also drug users. What is more, many IDUs also sell sex. One study, for example, found that 60 percent of female IDUs exchanged sex for money.57 Consistent condom use among sex workers is not high. He and colleagues found that among IDU sex workers, fewer than one-third reported consistent condom use with casual partners.58 Another survey of IDUs found that nearly 50 percent of sex workers reported having unprotected sex with causal partners in the preceding year.59 Most of these lower-class sex workers face great economic pressure and intense competition. This is particularly the case for drug users and for those who have to support families back home in rural areas: Business is bad. There are older women who charge only 10 Yuan [approximately US$1.20] for each transaction. We charge 20 Yuan. Our clients still bargain with us. Competition is intense. Business is not easy. Many [sex workers] are younger than us. There are those who are fifteen, sixteen years old, non-drug users, from rural and urban areas.

Waves of police raids exacerbated these sex workers’ economic vulnerability. Police raids on hair salons and beauty salons, massage parlors, and karaoke bars scared customers away and forced many entertainment venues to close down. As the sex workers we interviewed put it: This half-year the police got really tough [yanda]. . . . They are patrolling everyday in the area where we do business. . . . If they found us, they would

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lock us up. . . . Before they would just ask us to pay a fine and would let us go. Now they send us to the reeducation-through-labor centers. Our area used to have twenty to thirty ladies [xiaojie]; now there are only around ten. The police had locked up over half; all of those who were locked up used drugs. Once you are caught, you need to pay a fine ranging from 2,000 to 5,000 Yuan [approximately US$250–640]. Who has this money? Who can pay the fine?

The police actions seriously interrupted the livelihood of the sex workers, thus putting sex workers in an even more powerless position in negotiating safe sex with customers in an already unequal power relationship. Fearing of losing their customers, sex workers often succumb to pressure to have unsafe sex: Of course there are xiaojie [sex workers] who don’t use condoms. Business is bad. If we don’t make use of the time when the police are not around to do business, the police will return soon. Some customers don’t use condoms. They stayed for [the intercourse] less than two minutes. They say using a condom will take longer time [to ejaculate]. They are afraid of the police. The police are really keeping a close eye on us. They are everywhere. How can we find business?

The impact of police raids on the ability of drug-using sex workers to negotiate safe sex with customers is even more devastating. These sex workers need to earn enough money each day to support their drug habit. During periods of intensive police raids, customers are difficult to come by. By letting go of a customer, they may need to suffer the pain of craving, as elaborated by the case of a drug-taking streetwalker: He asked me my price. We were still bargaining. . . . He said he would give me fifty. He said he would not use a condom. I thought that maybe I could persuade him to use one after we arrived at the guesthouse. Yet he insisted on not using a condom. He said that it was uncomfortable. I didn’t have any money at that time. If I still didn’t get any money, I would definitely suffer the pain of craving [for drugs].

Discussion Our interviews with drug users and sex workers in Sichuan Province show that criminalization of drug users and sex workers are not effective means to

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combat the spread of HIV through drug use and prostitution. We have looked at some of the various dynamics through which police crackdowns have undermined the HIV/AIDS prevention efforts by public health officials and NGOs. We believe that these negative consequences of police crackdowns are exacerbated by the undemocratic nature of the Chinese state. Several important themes emerge from our analysis of these processes. First, in addition to being ineffective, prohibitionist policies against drug users and sex workers have a negative effect on the lives of both groups, as evidenced by the high relapse rates. Prosecution and the threat of prosecution of drug users cause and exacerbate their social isolation and stigmatization. Their families, which may provide them with a safety net, do not want to be socially marked as breeding criminals; neighbors and the community do not want to live with drug users; and employers discriminate against them. By incarcerating drug users, the state openly endorses their social stigmatization as undesirables and criminals. One of the major reasons for the failure of strict law enforcement is that it deals with consequences, not causes. For example, it deals with the physical dimension of drug dependency (dukyin), not its psychological and social conditions (xinyin). Criminalization does not instigate positive change among those being caught up in police actions. At the same time, criminalization (and social stigmatization) motivates those who are not yet caught to establish underground communities of drug users. These networks provide “a safety net” for those who return from “reeducation,” thereby perpetuating the vicious cycle of drug use, institutionalization, and relapse. Sex workers are exposed to the risk of HIV transmission through their inability to negotiate condom use with customers. Unequal enforcement of legal punishment with respect to the purchase and selling of sexual services creates additional inequalities between sex workers and their customers, with the sex workers therefore shouldering most of the blame, social stigmatization, and punishment. Police discrimination against sex workers that is more severe than treatment of their customers in effect reinforces social labeling of sex workers as lazy, unworthy, and dirty seducers of productive husbands. This inequality undermines the self-esteem and self-confidence of sex workers and inhibits their negotiation with customers. Police crackdowns also increase the economic vulnerability of sex workers, thus further decreasing their negotiating power. The effects of their detention are exacerbated by severe fines that increase their economic pressure, especially for lower-class sex workers and those who use drugs. Moreover, fear of such crackdowns decreases the time sex workers may need for successful negotiation of condom use and reduces the willingness of some customers to use condoms because doing so means that sexual gratification (ejaculation) may take a longer time. Second, criminalization undermines preventive policies, especially harmreduction programs designed for drug users. Naturally, both policies compete

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because they run in parallel. A drug user who is detained in a rehabilitation center is not only isolated from the rest of society but also deprived of participation in a harm-reduction program. More important, the needle-exchange program is inhibited by the detention of those who are searched and found with needles. Mere possession of needles is criminalized in China. Moreover, the needleexchange program carries a risk to those who implement it. As we pointed out earlier, during the time of our survey, three peer educators were detained. The situation in China with respect to the tension between criminalization and prevention bears some resemblance to the situation in the United States. Unlike that situation, however, the authoritarian nature of the Chinese state exacerbates the problem. The Chinese state operates as a moral patron and a guardian of good behavior, which does not tolerate (at least in principle) such deviant behavior as sex work and drug use. Consequently, it has taken nearly two decades before these two major facilitators of the HIV pandemic have stopped being mainly viewed in ideological terms as some bourgeoisie heritage or Western disease. We hail the recent effort of implementing up-to-date HIV policies, including harm reduction (most notably the commitment to establish 1,000 methadone centers within five years). We warn, however, that many positive policies may be undermined by shortsighted and repressive sectors within the Chinese state. For example, carrying needles is still considered sufficient evidence to condemn drug users to detention in reeducation centers, naturally without trials. The existence of crime-reporting systems makes the reintegration of drug users into society almost impossible: they are denied employment because of their criminal status, especially since the stigmatization of drug users is legally confirmed. The rebellion against reeducation centers reflects the lack of legitimacy of the state in general and its repressive organs in particular. This makes defiance legitimate for drug users and contributes to the ineffective results of these agencies.

Conclusion Since those who are most vulnerable to HIV/AIDS are often socially marginalized and suffer serious discrimination, we think that the drive to change the current dominance of repression over prevention must come from the top of the power hierarchy of the Chinese state. Yet if changes are going to come from the top, who is going to push the national government? The lack of democracy in China has resulted in a weak civil society. The precarious situation of most NGOs and grassroot organizations inhibits rigorous local mobilization for policy changes similar to that in South Africa. Despite the recent public display of concern and sympathy by top communist leaders such as President Hu Jintao

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and Premier Wen Jiabao toward AIDS patients, and the overall strengthening of central leadership on HIV/AIDS, there is no sign of increased tolerance toward AIDS activists. Some Chinese leaders may be aware of the need to work with the civil society to combat a series of social problems, including the rising HIV/AIDS epidemic. Yet the Chinese state is evidently wary of the burgeoning of organizations outside its direct control. This creates a political schizophrenia—with some segments of the state working with AIDS-related NGOs and activists and other segments of the state harassing such activists whenever their criticisms threaten the interests of officials.60 Furthermore, any effective policy change will require the collaboration of different government bureaus at central, provincial, and local levels. Even if the national government wants to change policies, the lessening of central control over local authorities may jeopardize the effective implementation of new policies at the local level.61 If an internal push for policy changes is difficult to come by because of the authoritarian nature of the Chinese state, international pressure for change will become even more important. Yet so far we have seen very little international effort to push China on AIDS issues. We do not know (and it is beyond the scope of this chapter) whether this is because of the tangled economic interests between China and the West. If this is the reason, then it only once again (tragically) confirms the central argument of this book—that it is power inequalities at the individual, internal, and international levels that determine the spread of AIDS and how actors cope with its effects.

Notes The authors thank the Department of Sociology and the Social Science Faculty of the Chinese University of Hong Kong for providing funding for this research. Thanks also go to the research teams at Sichuan Province and Yuet Wah Cheung. Their help and support in the research process and their comments on the draft of this chapter are greatly appreciated. Finally, we thank the participants in this project for their patience and generosity with their time. 1. Zunyou Wu, Keming Rou, and Haixia Cui, “Acceptability of HIV/AIDS Counseling and Testing Among Premarital Couples in China,” AIDS Education and Prevention 17, no. 1 (2005): 12–21. 2. China Ministry of Health and UN Theme Group on HIV/AIDS in China, A Joint Assessment of HIV/AIDS Prevention, Treatment, and Care in China (Beijing: China Ministry of Health, 2003), 5. 3. Ministry of Health, People’s Republic of China, Joint United Nations Program on HIV/AIDS, and World Health Organization, “2005 Update on the HIV/AIDS Epidemic and Response in China.” Available at http://data.unaids.org/Publications/External-Documents/RP_2005ChinaEstimation_25Jan06_en.pdf. 4. UNAIDS, HIV/AIDS: China’s Titanic Peril: 2001 Update of the AIDS Situation and Needs Assessment Report (Beijing: UNAIDS, 2002), 11.

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5. K. L. Zhang and S. J. Ma, “Epidemiology of HIV in China: Intravenous Drug Users, Sex Workers, and Large Mobile Populations Are High Risk Groups,” British Medical Journal 324 (2002): 803–804. 6. Edmund Settle, “Current Overview of HIV/AIDS in China,” China AIDS Survey, November 2003. Available at http://www.casy.org/overview.htm. 7. Wu, Rou, and Cui, “Acceptability of HIV/AIDS Counseling and Testing.” 8. Elena S.H. Yu et al., “HIV Infection and AIDS in China, 1985 Through 1994,” American Journal of Public Health 86, no. 8 (1996): 1116–1122; Yanguang Wang, “A Strategy of Clinical Tolerance for the Prevention of HIV and AIDS in China,” Journal of Medicine and Philosophy 25, no. 1 (2000): 48–61. 9. Yu, Xie, Zhang, Lu, and Chan, “HIV Infection and AIDS in China.” 10. G. Reid and G. Costigan, Revising the “Hidden Epidemic”: A Situation Assessment of Drug Use in Asia in the Context of HIV/AIDS (Victoria, Australia: Centre for Harm Reduction, 2002), 46–59. Available at http://www.chr.asn.au/resources/ libraryservices/docdownload/revisiting/list. 11. UNAIDS, HIV/AIDS: China’s Titanic Peril. 12. China Ministry of Health, State Development Planning Commission, Ministry of Science and Technology, and Ministry of Finance, China’s Medium- and Long-Term Plan for the Prevention and Control of AIDS (1998–2010) (Beijing: China Ministry of Health, 1998). 13. Edmund Settle, “AIDS in China: An Annotated Chronology 1985–2003,” China AIDS Survey, 2003. Available at http://www.casy.org/chron/AIDSchron_111603.pdf. 14. Campbell Aitken et al., “The Impact of Police Crackdown on a Street Drug Scene: Evidence from the Street,” International Journal of Drug Policy 13 (2002): 193–202; Lisa Maher and David Dixon, “Policing and Public Health,” British Journal of Criminology 39, no. 4 (1999): 488–512. 15. Ernest Drucker, “Drug Prohibition and Public Health: 25 Years of Evidence,” Public Health Reports 114, no. 1 (1999): 14–29; Cathy Lisa Schneider, “Racism, Drug Policy, and AIDS,” Political Science Quarterly 113, no. 3 (1998): 427–446. 16. Patricia G. Erickson et al., eds., Harm Reduction: A New Direction for Drug Policies and Programs (Toronto, ON: University of Toronto Press, 1997); Y. W. Cheung, “Substance Abuse and Developments in Harm Reduction,” Canadian Medical Association Journal 162, no. 12 (2000): 1697–1700; G. Alan Marlatt, ed., Harm Reduction: Pragmatic Strategies for Managing High-Risk Behaviors (New York: Guilford Press, 1998); James A. Inciardi and Lana D. Harrison, eds., Harm Reduction: National and International Perspectives (London: Sage, 1999). 17. Paul Deany and Nick Crofts, “Harm Reduction, HIV, and Development,” Macfarlane Burnet Centre for Medical Research 52 (2000): 45–48. 18. Bruce D. Johnson, Lisa Maher, and Samuel R. Friedman, “What Public Policies Affect Heroin Users?” Journal of Applied Sociology 18, no. 1 (1987): 14–49. 19. John S. James, “US National Commission on AIDS Major Report,” AIDS Treatment News, October 11, 1991. 20. Ricky N. Bluthenthal et. al, “Impact of Law Enforcement on Syringe Exchange Programs: A Look at Oakland and San Francisco,” Medical Anthropology 18 (1997): 61–83. 21. Stephen K. Koester, “Copping, Running, and Paraphernalia Laws: Contextual Variables and Needle Risk Behavior Among Injection Drug Users in Denver,” Human Organization 53, no. 3 (1994): 287–295. 22. Hannah Copper et al., “The Impact of a Police Drug Crackdown on Drug Injectors’ Ability to Practice Harm Reduction: A Qualitative Study,” Social Science and Medicine 61 (2005): 673–684.

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23. Reid and Costigan, Revising the “Hidden Epidemic,” 46–59. 24. Drew Thompson, “China’s Growing AIDS Epidemic Increasingly Affects Women,” Population Reference Bureau, June 24, 2005. Available at http://www.prb.org. 25. “Drug: Dying Cinders Glowing Again,” Zhong Guo Zhou Kan, June 24, 2005. Available at http://edu.sina.com.cn/en/2002-11-14/7119.html; Chris Beyrer et al., “Overland Heroin Trafficking Routes and HIV-1 Spread in South and South-East Asia,” AIDS 14, no. 1 (2000): 75–83. 26. Reid and Costigan, Revising the “Hidden Epidemic.” 27. Chinese Ministry of Heath, Department of Disease Control, “National Sentinel Surveillance of HIV Infection in China from 1995 to 1998,” China Journal of Epidemiology 21 (2000): 7–9. 28. Chinese Ministry of Public Security Bureau, “White Paper on Drug Prohibition.” Available at http://www. mps.gov.cn/webPage/showfagui.asp?ID=954 (accessed September 7, 2005). 29. Information Office of the State Council of the People’s Republic of China, “Narcotics Control in China,” 2005. Available at www.china.org.cn/e-white/1/index.htm. 30. Edmund Settle, “Legalize Prostitution in China,” South China Morning Post, July 29, 2004, 30. 31. Tiantian Zheng, “From Peasant Women to Bar Hostesses: Gender and Modernity in Post-Mao Darlian,” in On The Move: Women in Rural-to-Urban Migration in Contemporary China, ed. Arianne M. Gaetano and Tamara Jacka (New York: Columbia University Press, 2004). 32. Daqin Li, Xiwen Zheng, and Guiyun Zhang, “The Survey of HIV Prevalence Among Ethnic Minorities in Guizhou,” Chinese Journal of Epidemiology 21 (2000): 133. 33. UNAIDS, HIV/AIDS: China Titanic Peril, 23. 34. Ann Jordon, “Commercial Sex Workers in Asia: A Blind Spot in Human Rights Law,” Women and International Human Rights Laws 2 (2000): 525–585. 35. Vince Gil et al., “Prostitutes, Prostitution, and STD/HIV Transmission in Mainland China,” Social Science and Medicine 42, no. 1 (1996): 141–152; Guomei Xia and Xiushi Yang, “Risky Sexual Behavior Among Female Entertainment Workers in China: Implications for HIV/STD Prevention Intervention,” AIDS Education and Prevention 17, no. 2 (2005): 143–156. 36. Jordon, “Commercial Sex Workers in Asia.” 37. Xiaobing Yang, “China Launches Anti-Prostitution Campaign,” Beijing Review, November 11, 1991. 38. Xia and Yang, “Risky Sexual Behavior Among Female Entertainment Workers.” 39. Jordon, “Commercial Sex Workers in Asia.” 40. Ibid. 41. Zhang Qingfeng, “Reform the Reeducation-Through-Labor System in China,” Perspectives 5, no. 1 (March 31, 2004): 1–4. 42. Susanne Y.P. Choi, Yuet Wah Cheung, and Zen Qing Jiang, “Ethnicity and Risk Factors in Needle Sharing Among Intravenous Drug Users in Sichuan Province” (paper presented at the International Conference on Infectious Diseases and Human Flows in Asia, University of Hong Kong, June 2005); Susanne Y.P. Choi, Yuet Wah Cheung, and Kang Lin Chen, “Gender and HIV Risk Behavior Among Intravenous Drug Users in Sichuan Province China,” Social Science and Medicine 62 (2006): 1672–1684. 43. Elizabeth A. Wells and Donald A. Calsyn, “Retention in Methadone Maintenance Is Associated with Reductions in Different HIV Risk Behaviors for Women and Men,” American Journal of Drug and Alcohol Abuse 22, no. 4 (1996): 509–521; G.

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Serpelloni and M. P. Carrieri, “Methadone Treatment as a Determinant of HIV Risk Reduction Among Injecting Drug Users: A Nested Case-Control Study,” AIDS Care 6 (1994): 215–220; Erickson Cheung, Yuet Wah Cheung, and James M.N Ch’ien, “Drug Use and Drug Policy in Hong Kong: Changing Patterns and New Challenges,” Substance Use and Misuse 31 (1996): 1573–1597. 44. Ministry of Health, People’s Republic of China, Joint United Nations Programme on HIV/AIDS, and World Health Organization, “2005 Update on the HIV/AIDS Epidemic and Response in China.” 45. China-UK HIV/AIDS Prevention and Care Project, Progress Report of China-UK HIV/AIDS Prevention and Care Project in Sichuan: Report of Panzhihua City (Sichuan: China-UK HIV/AIDS Prevention and Care Project Office, 2004). 46. Xia and Yang, “Risky Sexual Behavior Among Female Entertainment Workers.” 47. Chinese Ministry of Health, Department of Disease Control, “National Sentinel Surveillance of HIV Infection in China from 1995 to 1998,” 7–9. 48. China-UK HIV/AIDS Prevention and Care Project, China-UK AIDS Prevention and Care Project in Sichuan: Report of Panzhihua City, 112–115. 49. Ibid. 50. Ibid., 52–59. 51. Updated numbers for 2004 and 2005 were obtained during personal communication with officials at the Sichuan Ministry of Health. China-UK AIDS Prevention and Care Project, Sichuan Comprehensive Surveillance Report for HIV/AIDS (Sichuan: China-UK HIV/AIDS Prevention and Care Project, 2002), 6. 52. Feng Cheng et al., “SASH Survey on High Risk Behaviors of IDUs in Four Cities of Yunnan and Sichuan,” Chinese Journal of Drug Dependence 12, no. 4 (2003): 294–298; Kang Lin Chen, “Community-Based Survey on Sharing Injection Equipment Among Injection Drug Users,” Chinese Journal of AIDS and STD 10, no. 2 (2004): 90–92. 53. Yuhua Ruan et al., “Community-Based Survey of HIV Transmission Modes Among Intravenous Drug Users in Sichuan, China,” Sexually Transmitted Diseases 31, no. 10 (2004): 623–627. 54. Choi, Cheung, and Jiang, “Ethnicity and Risk Factors in Needle Sharing”; Choi, Cheung, and Chen, “Gender and HIV Risk Behavior,” 1676. 55. Susanne Y.P. Choi, “Gender, Drug Use and AIDS in China” (paper presented at the International Conference on Tackling Drug Abuse, Hong Kong, February 2005), 6. 56. Choi, Cheung, and Jiang, “Ethnicity and Risk Factors in Needle Sharing.” 57. Yixin He, Yuhua Ruan, and Tao Teng, “Community-Based Survey of Drug Use and Behavior Among Female Injection Drug Users,” Chinese Journal of AIDS and STD 9, no. 6 (2003): 343–346. 58. Ibid. 59. Choi, Cheung, and Chen, “Gender and HIV Risk Behavior,” 1676. 60. Human Rights Watch, “Restrictions on AIDS activists in China” 17, no. 5 (June 2005). Available at http://www/.hrw.org/. 61. “China: Atomized,” The Economist, June 3, 2006, 27–28.

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8 Guilty as Charged: Accountability and the Politics of AIDS in France Michael J. Bosia

We should be more Republican than the Republicans! —Act Up Paris militant1

Winter had descended on Paris when activists gathered under a gray sky in the Place de la République for the 2001 World AIDS Day march. As always, the march was organized and led by Act Up Paris, a pressure group founded in 1989 and inspired by US AIDS activism and gay identity politics.2 Shoulder to shoulder under their banner were Robert Hue, who would be a candidate in the 2002 presidential election and whose Communist Party was an active part of the center-left government of Socialist Lionel Jospin; Bernard Kouchner, minister of health and a founder of Médecins sans Frontières; and Pierre Bergé, cofounder of the Yves St. Laurent fashion house, principal financial backer of the lesbian/gay magazine Têtu, who was a friend of former president François Mitterrand and close to the Socialist Party leadership. They stood with Emmanuelle Cosse, barely thirty years old, the first woman, heterosexual, and HIV-negative president of Act Up. The Act Up banner, with bold white letters on a field of black, read SIDA: L’AUTRE GUERRE (AIDS: The Other War).3 At the dawn of post–September 11 politics, just over two months after the attack on the World Trade Center and shortly after the US war on terrorism won the backing of the Jospin government and began in earnest in Afghanistan, Act Up called for a different political agenda. Activists substituted the war against AIDS for the war against terrorism. Hue, Kouchner, and Bergé walked silently, bathed in the orange-pink glow of a flare held by an activist while posing for the television cameras and photojournalists. The Act Up militants who surrounded them blew whistles or shouted “Sida est une guerre: Act Up en Colère” (AIDS Is a War: Act Up in Anger). Dozens of posters marked the global contour of the battlefield, and “10,000 Deaths Each Day” indirectly juxtaposed the daily global death toll from AIDS with the 3,000 who perished at the World Trade 155

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Center. For prison inmates: “Sida: Guerre Pour les Grâces Médicales” (War for Medical Reprieves). For gay men: “Guerre Pour la Prévention” (War for Prevention). For IV-drug users: “Guerre Pour les Salles de Shoot” (War for Safe Shooting Galleries) and “Guerre Pour la Légalisation des Drogues” (War for Drug Decriminalization). For developing countries: “Guerre Pour les Génériques” (War for Generic Drugs). These images demonstrate how contention over AIDS in France often has been situated in broadly political questions that have transformed the identities of those touched by the pandemic. In the early years of AIDS, homosexuality was entangled with the disease in the public mind, but since then, Act Up Paris has been instrumental in fostering a sense of common destiny among people with AIDS, both in France and between France and the global South. In doing so the group held firm to the position of the activist as an “outsider” who challenges government policy. Although the rhetoric might seem similar to that of ACT UP during its heyday in the United States, Act Up Paris has gone farther than any other gay AIDS activist organization. It is unique in demanding and winning the criminal indictment of former government ministers. Where US activists seemed to use charges of “murder” and a “holocaust” to leverage access to decisionmaking, gay men at Act Up Paris worked with hemophiliacs who filed criminal accusations against a former prime minister and two of his ministers for their failures in responding to AIDS during the 1981–1986 Socialist governments. Calling attention to the responsibility for the distribution of HIV-tainted blood used for transfusions and blood products to treat hemophilia, these charges of involuntary homicide or even murder became real and valid political as well as legal claims in France, and the ministers were tried in a special court in 1999. Through these charges, Act Up fought the accusations that AIDS came to France from the United States via homosexuality and that gay activism represents a threat to French values and was responsible for the delayed response to the disease in the early 1980s. This chapter brings out the cultural profile of homosexuality and AIDS, through common values, narratives, and discourse, that challenged organizing in France, marking the experiences of Act Up as grounded in the power of national culture, concepts, and meanings despite manifestations of a transnational network of gay and AIDS activism. In both popular and elite discourse, AIDS and modern gay identity were portrayed as foreign dangers to French culture and the nation, in many ways marking activists and people with AIDS as outside the French polity and so disempowered. As a result, activists had to fashion their identities, as homosexuals and people with AIDS, through narratives that reinvented many established values associated with French citizenship, demonstrating that they were indeed members of the national community. In the process, they transformed Act Up itself and AIDS activism in France by attempting to resolve the cross-cutting cleavages associated with AIDS politics—for example, along race or gender lines—and by crafting a

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narrative about the disease with a strong sense of “linked fate” among those touched by HIV.4 From an organization primarily of and for gay men facing AIDS, Act Up developed a broad agenda to reflect the scope of the epidemic as a social and political issue in France. This approach addresses the politics of AIDS by calling attention to one scenario where activists combined individual race, class, gender, or sexual identities to resist the forms of marginalization associated with the disease across a broader political field.5

French Citizenship and the “Foreignness” of AIDS In the United States, activism was encouraged by a politics of access to power—in decisionmaking and control over resources—that further divided communities confronted by a frightening epidemic and challenged by the association of race, sexuality, and AIDS. In France, however, political power rests on republican values that emphasize expertise and a common interest, national solidarity, equality, and integration and where movements demand action from the state. Although facing a uniquely French mélange of race, sexuality, and AIDS, Act Up Paris asserted its own citizenship, through a form of identity politics reflecting an alternative republicanism, where the particular interests of homosexual men with AIDS were at times relegated to the background in favor of a broadly social commitment to solidarity that associated identity, ideology, and expertise. In general, the republican model of universal citizenship is juxtaposed against what the French describe as the particular (sometimes called “primordial”) nature of identity politics and multiculturalism in the United States. Private expressions of identity, including sexual identity, are permitted in the republican model, but the politicization of identity represents the invasion of the public sphere by organized private interests that disrupt the direct relationship between each citizen and the state. Until 1901, French law prohibited all intermediary advocacy associations, and such organizing was largely discouraged throughout the first decade of AIDS. For republicans, private particular interests dilute the expertise that is necessary for the rational analysis of policy through which state leadership legitimates public policy as a common interest or general will. Moreover, such private organizing is always on the verge of dissolving into intergroup competition, a “tribalism” leading to a “balkanization” or “lebanonization” of French political life.6 Even for those who favor some form of identity expression, the political mission becomes, in a way that is typical of statist republican values, the control of competition between identity groups.7 By the early 1980s, common sense characterizations of homosexuality had passed from a narrative about sexual degeneracy as disease or social scourge to a positively framed question of personal adjustment and integration

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into society. The “morality” that played a role in the evolution of homosexuality was the moral nature of citizenship, and the new Socialist government under François Mitterrand adopted the first legal protections for homosexuals. Even with greater legal rights, however, homosexuality remained a question of values considered foreign and so a danger to the nation itself. Homosexuality remained tied to anti-Semitism in that both gays and Jews, although legally emancipated, were considered to be tightly knit communities with international allegiances that undermined their national loyalties. Incorporated into the iconography of anti-Semitism was the new characterization of US politics. In the 1980s, for example, the “ghetto” was a private space that gays and lesbians “came out of” to become full citizens, much like the ghetto Jews had escaped, whereas gay sexuality remained a private issue unrelated to a particular agenda in the same way Jewish faith was private. After 1990 and the founding of Act Up, homosexuals were said to be “returning to the ghetto”—in the US sense of a separatist “gay ghetto” such as the Castro district in San Francisco—in order to build a unique cultural identity outside of their French citizenship.8 Issues of political inclusion became a question of a “powerful lobby” forcing government to act in its interests, which again fused anti-Semitism and anti-US sentiment. The “Jewish Lobby,” as a kind of conspiracy that operates in the halls of power, was a deeply held suspicion. Although economic lobbies influenced government, only with the emergence of homosexual and AIDS activism did the press and politicians begin to suspect the existence of a “gay lobby” and to describe it with some of the same terminology that has served as a metaphor for foreign infiltrators, including Jews and more recent immigrants from North Africa. In 1998, a leading left republican implied that Act Up and others were “little groups on the extreme left orchestrated by foreign political factions.”9 The next year, the former Socialist ministers at their trial defended the delayed response to the danger of AIDS in the blood supply by claiming that this “gay lobby” had put the brakes on a more rapid response, and the public prosecutor accused one of the defendants of buckling in the face of “pressure from homosexuals.”10 In those years, French homosexual and AIDS activism was frequently attacked or characterized as American by a variety of homosexual and heterosexual intellectuals, opinion leaders, and politicians on the right and left. In 1996 Frédéric Martel, in his Le Rose et Le Noir (The Pink and the Black), opposed the emergence of a politicized gay identity because of the particular interests he claimed it would express.11 Sometime counselor to Socialist politicians, in his book he blamed what French republicans call “American”-style identity politics in the homosexual community for the spread of AIDS.12 Since the early 1980s, mainstream newspapers have adopted US terminology, using “gay” and “gay pride” to mean a politicized identity in the US form, whereas “homosexuel” or “homo” indicates a private, more acceptably French one.13

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The idea of a US origin for gay politics mirrors the perception that AIDS originated in the United States. In the first years, AIDS was a cancer newyorkais primarily affecting homosexual men.14 This discourse influenced news coverage that emphasized the number of people with AIDS in France who had contracted the disease during visits to New York.15 It also played a role in the delayed response to the risk of contaminated blood, as officials believed that France’s self-sufficiency in blood was adequate protection. Both the death of Rock Hudson, after seeking treatment in Paris, and a dispute between researchers in the United States and France, over who identified the virus first, solidified the relationship of AIDS in France to its US experience. As recently as 2000, the image of a sex club in New York oddly illustrated a story about the rising rates of unprotected sex among Parisian homosexual men.16 On the extreme right, the National Front used AIDS as shorthand for an anti-Semitic narrative that treated both Jews and French North Africans as cultural foreigners and portrayed these communities as privileged members of a conspiracy with Socialist leaders. Jean-Marie Le Pen defined Sida as “Socialism, Immigration, Delinquency, and [political] Affairs” to call attention to the coincident arrival of AIDS and the “immigrant problem” with the election of the Socialist Mitterrand in 1981. He insisted on using the term sidaïque for people with AIDS, which parallels judaïque or Jewish, instead of the official sidéen. The National Front frequently railed against the “homo conspiracy” or lobby that they claimed was a dominant force in Socialist governments, linking financial scandals to gay activists to Jews and immigrants. Former prime minister Laurent Fabius, of Jewish descent, was accused by both hemophiliacs allied with Act Up and the National Front for complicity in the distribution of tainted blood. The front, however, went on to link Fabius to an alleged “homo lobby” including Act Up and the “international Masonic conspiracy” with which the right in France has always been obsessed.17 Although the left and the media considered gay activism and AIDS to be of US origins, fears on the right centered on Masons, Jews, homosexuals, and immigrants, who came to represent the foreign danger. Act Up is nevertheless not guilty as charged by the left, the political establishment, or certainly the right wing. The images of a political alternative from the World AIDS Day march in 2001, as post–September 11 politics came to preoccupy much of the world, reflect a broader political orientation than the republican accusation would grant. Government leaders felt compelled to join Act Up on that winter day, despite the emerging war on terror that their government had joined, and certainly the program spelled out by activists as well as the leadership of a young straight woman challenged the common accusation of a “gay” agenda. This is because Act Up ultimately transformed AIDS activism in France. Initially dominated by those who believed their primary effort should be among and on behalf of gay men at risk for AIDS, new leadership at Act Up would attempt to resolve the cleavages associated with the disease in order to

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craft common narratives among all those touched by HIV, narratives that appropriated many established values associated with the citizens and demonstrated that they were indeed members of the national community. The criminal trials relating to the distribution of HIV-tainted blood and blood products represent the watershed moment when Act Up transformed identity politics so that AIDS and homosexuality appear strikingly different to those expecting an agenda that reflects private or particular interests. On the issue of blood contamination, Act Up from 1992 onward was the only AIDS activist or service-oriented organization dominated by gay men to play a visible role in the unfolding scandal surrounding the trial of national blood bank administrators for their role in the distribution of HIV-contaminated blood in 1984 and 1985. Activists drew a link between the government’s failed prevention programs and its failure to protect the blood supply, placing criminal accusations against Socialist government ministers on the national agenda. Former prime minister Fabius, former social affairs minister Georgina Dufoix, and former health minister Edmond Hervé were tried in 1999 for involuntary homicide. In the midst of these efforts, Act Up launched a broad-based movement called Nous Sommes la Gauche (We Are the Left) during the 1997 elections to contest the platform of the Socialist Party. Accused of being under the thumb of a US model, Act Up demonstrated its innocence by instead accusing the political establishment of indifference to AIDS.

1989–1992: Act Up Paris and the Politics of “Gay” Identity The history of Act Up Paris begins with Didier Lestrade’s trip to New York City in 1987 as a journalist for Gai Pied; there, Lestrade told me, he discovered the growing ACT UP movement.18 He returned to France in 1989 and said the excitement he found in the United States led him to establish Act Up Paris with a small group of friends in his living room. The organization was launched at Gay Pride with T-shirts from New York emblazoned with the US motto Silence = Death. Lestrade is not the only leader of Act Up with experience at the parallel organization in New York. Christophe Martet, who served as president in the mid-1990s, went there soon after learning that he was HIVpositive. Once a television journalist covering economic issues, Martet stayed in New York for several months, returning to Paris and joining Act Up there in April 1991. They both explained to me that they became open about their sexuality and HIV status because of ACT UP. Lestrade and Martet saw in New York at the time something unique, in that the group brought together a diverse group of activists representing the epidemic’s effects in many communities.19 Act Up Paris has been substantively different. Though from its inception it was organized, according to the first membership brochure, “to defend equally all the populations touched by AIDS,” its early membership

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and leadership overwhelmingly identified as gay and directed their primary actions within the gay community, reflecting more the fact that it was issue de la communauté homosexuelle (originating in the homosexual community, a term they preferred to use in public).20 When Martet joined, there were forty active members. Though the membership grew substantially after 1992, Act Up remains an organization of homosexual men “on the front lines, with all the others affected by AIDS behind us,” explained former president Philippe Mangeot.21 Indeed, activists in no way reflect the diversity of the epidemic in France, a diversity similar to that in the United States, with few members from communities associated with immigration, few HIV-positive women, and only a handful of hemophiliacs touched by AIDS. Many of the women in the organization have been straight and HIV-negative, as are a few of the men. Disputes within Act Up are not primarily class based or identity based—for example, dividing women from men or white gay men from people of color—but instead are ideologically driven, dividing along political lines a well-educated, savvy group of activists who are primarily homosexual. Lestrade considers himself a “moderate” because his concerns reflect the effect of AIDS on gay men and characterizes the others, including Martet, as the “radicals” who see AIDS as a larger symptom of a variety of state failures in addressing questions of marginalization.22 Just as people of color and well-established white gay men came to represent the divisions at ACT UP in the United States, Lestrade and Martet have come to symbolize the divergence of opinion that grew in Act Up Paris during the 1990s. Activists were faced with a government that failed to implement AIDS prevention or significant care programs for people with AIDS until 1987, when the extreme right-wing National Front’s rhetoric did stir a center-right coalition to act, though subsequent AIDS policy was developed within a republican framework that could not recognize the specific impact the disease has on different communities. Indeed, republican values even prohibit the gathering of demographic data such as race or ethnicity. Unwilling to recognize the existence of a homosexual community through targeted prevention programs, governments throughout the 1980s and 1990s decided to depoliticize the disease. Public education focused on broad-based campaigns that presented AIDS as a universal concern or offered simple prevention messages. Fearing that local governments controlled by the right would implement draconian measures, AIDS was nationalized in 1986, and local governments were forbidden to act. Even the early community-based efforts, modeled on service providers in the United States, failed to mobilize the gay community against AIDS. In response, Act Up struggled with an agenda that would establish a renewed citizenship informed by, but not hostage to, republican values. Even moderates took care to develop a limited notion of identity. The first tract to

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directly address community, “La famille choisie” (issued by the moderates in 1989), modeled identity and community on the family. Although personally these activists embraced a sense of identity more like that in the United States, their effort drew strategically from the idea of the family, a republican institution bound together by solidarity so that each defends the others and the younger learn good citizenship from their elders. This, they suggested, was the model for a new homosexual community and, ultimately, for a nation whose “structures and behavior have shown until now that it is unable to save its members.”23 For radical activists who joined later, however, republican citizenship was common sense, not merely strategic, shaping their view of themselves around the ideals of solidarity, equality, and integration and emphasizing coalition building with a broad range of communities to directly address issues of marginalization affecting labor, women, immigrants, inmates, and drug users. Identity was not about looking inward for the radicals, as it was for the moderates, but looking outward to society at large and acting as a vanguard for the marginalized. Six years after the group’s founding in 1989, Philippe Mangeot, a radical, responded to the growing debate over identity politics by seeming to turn 180 degrees in defining community as a private, not political, order: “A community is a place of social interaction, of exchange, of shared social and sexual practices, but it is not very much more than that.”24

1992–1996: Act Up and Accountability in the Politics of AIDS Martet was one of the leaders of the emerging agenda that Lestrade considered radical. The first person Martet met at Act Up was Joëlle Bouchet, who came because her son Lüdovic had contracted HIV through blood products used to treat hemophilia. She was angry that the government and doctors did not tell her about the risk, and she was searching for the right treatments that would keep her son alive.25 The Bouchets were attracted to the anger of the other activists and their struggle to stay alive. They also pushed Act Up to play a role in the trials against the administrators at the national blood bank and to direct their accusations against the Socialist government ministers in charge in 1984 and 1985. At first, gay activists, especially moderates who dominated the organization at the time, were not receptive to her arguments. They were concerned that the rightist rhetoric distinguishing between people with AIDS who were “innocent” and others who “deserved” the disease already fueled the politics of blood. Nevertheless, Bouchet and radicals in the organization were able to develop a common narrative on the issue when they joined forces to argue that the highest Socialist ministers had abandoned republican values in favor of what Martet called the “revalorization of business” that was part of the French

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engagement with economic globalization in the Fabius government after 1984.26 The Fabius government had forced the blood bank to reduce its ongoing deficit as part of financial rigueur or austerity, delaying the use of costly cleansed blood products that could have been imported and deferring a decision on HIV-screening of blood donations to give time for the approval of a test developed by a French pharmaceutical company with ties to Fabius himself. Act Up argued that the same skewed priorities and indifference to the communities touched by AIDS motivated both the government’s failure to develop early prevention programs and its failure to protect the blood supply. In January 1992, Act Up was the first to target Fabius by demonstrating outside Socialist headquarters when he was named head of the party. One of the largest actions during the annual Day of Despair, with activists demonstrating around Paris, called attention to the trials of blood bank administrators that were expected to begin the following summer as well as to the accusations against Fabius. Act Up members disrupted a meeting on AIDS held by one blood bank official by covering him with fake blood. For five weeks during the summer of 1992, they picketed outside the Palais de Justice for up to six hours every day as four blood bank administrators were on trial inside. Their posters read Fabius: Assassin! and they carried a banner that accused the state of murder. Two years later, Act Up called for a “Nuremberg du Sida,” drawing on the post–World War II war crimes trials to justify a comprehensive prosecution of leading politicians for all their failures in the war against AIDS.

The Transformation of AIDS and Identity Politics These criminal accusations, which were the first major effort not targeting an issue solely linked to the gay community, transformed AIDS activism in four ways. First, they challenged the notion that homosexual activists were concerned only with themselves. “Gay people were fighting for something other than themselves,” Martet explained, and Mangeot agreed: “Joëlle put fags on the front lines, and behind us were all the people affected by AIDS.”27 Second, Act Up became the leading AIDS organization, distinguished from homosexual or AIDS activists strongly identified with the Socialist Party and those whose republicanism disconnected homosexuality from AIDS, such as AIDES and other government-supported service providers like it. Third, newspapers all over France published photos of the Act Up demonstrations, and the major television networks showed footage of the events, increasing knowledge about the movement and demonstrating its emphasis on a common front against AIDS. Fourth, HIV transmission would remain an important part of Act Up’s symbolic arsenal. Although US lesbian and gay AIDS activists ignored issues of sexual behavior, blood, and HIV transmission, Act Up would return to the images of blood and sex to call attention to the government’s ongoing inability to develop

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appropriate prevention campaigns in the homosexual community and to demonstrate how the governing left, in a variety of ways, was actually a vector for HIV transmission. Through the blood-related criminal trials and accusations against the ministers, the radicals gained the upper hand, and their alternative republicanism defined Act Up as an association of self-taught experts, more knowledgeable about AIDS, more concerned about the effect of AIDS in French society, and more resolved toward a common interest than a particular one, different from both the moderates who emphasized the needs of gay men first and the governments they attacked for indifference to all those touched by AIDS. Nevertheless, for the radical activists, all these attributes came from being marginalized as gay. Act Up began to view itself as an avant-garde, part of a movement for all marginalized communities led by one.28 Through this approach, it became the most successful organization “originating in the homosexual community” in France, as measured by popular support in opinion polls, extensive mainstream newspaper coverage, its leadership of the annual World’s AIDS Day march, and the willingness of politicians on the right and left to enter into dialogue with Act Up or participate in events organized by the group. Coverage of Act Up in Le Monde, the dominant French daily newspaper, increased from 3 articles in 1991 to 23 in 1992, the year of the initial accusations against the ministers; 31 in the following year; and 25 in 1995. In a 2000 opinion poll, 20 percent of respondents agreed that Act Up best expressed the values of the left. Only labor unions ranked in advance at 28 percent.29 Act Up spokespersons are routinely quoted in the press, and their actions illustrate AIDS-related news coverage. Since 1995, activists have held the senior staff positions at the gay newsmagazine Têtu. Ministers and the heads of the national AIDS agency meet with Act Up, attend weekly meetings, or, as they did December 2001, march with Act Up. AIDS organizations join Act Up on World AIDS Day, and the group demonstrates around other issues on the left, during the May Day march organized by labor unions, against globalization, or in support of undocumented immigrants. During this transformation, Act Up grew from approximately fifty members at weekly meetings to more than 300 in 1993.30 These new members would shape the direction of Act Up for the rest of the decade. Some of them, like Emmanuelle Cosse, were formed in the politics of the extreme left and the antiracism movements tied to the Socialist Party that began in the 1980s, such as SOS-Racisme.31 They rallied around Cleews Vellay, who had won the presidency of the organization from Lestrade in a bitter dispute in 1992. Breathing new life into Act Up over the next four years, they pushed to the forefront those issues of economic and social inequality at the center of French republican politics, marching with a newly invigorated alternative left, the unemployed, women, sex workers, and Maghrebi communities for the rights of immigrants and the sans-papiers or undocumented immigrants and

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for the needs of drug users. These new activists launched one noteworthy campaign against the expulsion of undocumented immigrants with AIDS that featured images equating the deportations ordered by the sitting Socialist government with those of Algerians ordered out of France during the movement for Algerian independence in 1961 and of the Jews sent to German concentration camps by French officials after 1941. They soon organized around issues important to those with AIDS in the global South and challenged globalization as a cause of AIDS. When French president Jacques Chirac scheduled new elections to the National Assembly in 1997, Act Up was in a position to stake a claim within the alternative left. Activists considered a variety of strategies, including fielding their own candidates.32 With the Socialist Party heading an official coalition formed with Greens, Communists, and the Republican left, Act Up decided on “Nous Sommes la Gauche” (We Are the Left), an alternative coalition of organizations demanding recognition from the “official” left as their legitimate constituency. Challenged by financial problems, the ideological cleavage between moderates and radicals, and declining membership, Act Up was still successful at broadening this effort and bringing it to national attention.33 As the organizers and spokespeople, Act Up generated extensive coverage in the national press, though the parties themselves by and large failed to respond, except for the smaller parties in the official coalition who agreed to meet with the activists. Still, the manifesto of Nous Sommes la Gauche was a precursor to the alternative left that emerged with force in the 2001 municipal elections (when in some cities more than 10 percent of the first round votes went to new or extreme left parties) and later siphoned enough votes from the Socialist candidate in the 2002 presidential election to cost him a place in the final round of voting. In a way predicting these subsequent elections if not the stunning victory of the coalition of parties on the left in 1997, the Nous Sommes la Gauche manifesto warned: “The official left will not win the elections without us. . . . We are the electors of the left, but we do not want to be so by default.”34 Act Up won the support of more than 100 organizations and individuals, including those such as Groupe d’information et de soutien des immigrés (GISTI) that worked with undocumented immigrants or immigrant communities, others that advocated for drug legalization, and many that headed mainstream and radical labor unions, and it received the editorial support of the journals Vacarme, Politis, and Témoignage Chrétien. “We are the left that struggles,” the manifesto claimed, “and has always struggled for our own quality of life and the quality of life of all. For the immigrants, the unemployed, homosexuals, women, the homeless; for people with HIV, drug users, prisoners; for all the people who every day must submit to exploitation, repression, and discrimination.”35 Since 2001 and the challenge to post–September 11 politics issued on that winter day, Act Up has continued to serve as one of the more radical voices in AIDS activism, emphasizing a linked fate with others touched by AIDS and

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those on the margins both within France and globally. For example, although other organizations of gay men have challenged the governments of Muslim countries over the criminalization of homosexuality, Act Up solidified its relationships with immigrant-rights workers by drawing on this issue to challenge the French government to expand the right of exile and end the expulsion of undocumented immigrants. As violence emerged in the poverty-stricken suburbs of Paris in 2005, Act Up again condemned the policies of the government and joined a broad coalition advocating for the rights of immigrants. Marching with antiglobalization activists, Act Up has fought global pharmaceuticals and First World NGOs that are conducting drug trials within marginalized populations in Asia and Africa, demanding expanded disclosure and the right to lifetime health care for participants.

Conclusion: Accountability and Political Transformations Who, then, is responsible for AIDS in France? Even though a special criminal court dominated by members of parliament acquitted former premier Laurent Fabius and former minister Georgina Dufoix and handed a suspended sentence to their colleague at the Health Ministry, the public believed Act Up. Opinion polls throughout the 1990s showed consistent and wide support for the proposition that the ministers were in fact guilty of criminal negligence in the distribution of contaminated blood and that they were protected by the political establishment. Despite these public beliefs, though, Fabius remained a prominent politician, serving as minister of finance until 2002, and Hervé continued to hold office. Only Dufoix, who served as head of the French Red Cross after her stint as a minister, has withdrawn from public life. But in an astonishing display that demonstrates the new position staked out by Act Up and the political consequences of the trials, Fabius actually marched at the head of the Gay Pride parade and repositioned himself from his days of promoting austerity, instead advocating a tough stance against globalization for his presidential campaign in 2007. Despite this transformation, Fabius remained unpopular even with the Socialist Party membership, coming in third out of three candidates who faced off to win an internal primary to lead the party in the 2007 presidential election. I have argued that Act Up is not simply rose (pink or gay) by any other name. Certainly, a minority of the public and political leaders on the left and right still accept the paradigm that defines AIDS and homosexual activists as foreign dangers. They remain attracted to evidence that Act Up manifests a “rose-tinted” transnational AIDS strategy dependent on US gay identity politics, suggested by the links between the Paris and US chapters and the participation of French activists at Americanized events such as Gay Pride.36 Yet a large and growing segment of the public, and even many in the establishment,

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accepts the transformation of homosexual and AIDS activists into legitimate citizens through concerns framed as common interests with a strong commitment to solidarity. This does not mean, however, that Act Up is not an identity-based group. Act Up tackles a variety of issues concerning homosexuality, on AIDS and in general, and it acts through identity-based understandings that shape its reaction to both these concerns and issues affecting other marginalized communities. These activists have exercised cultural power by crafting a political alternative based on established values, situating identity within the Republican discourse and not outside of it. Their transformation of AIDS and identity, based in large part on a politics of confrontation and accountability, provided a foundation upon which the relatively bland Socialist Bertrand Delanoë could transform himself into a winning candidate for mayor of Paris in 2001. Because of his sexuality, many Parisians considered him the outsider—like the outsiders at Act Up—who promised accountability from a previously corrupt and aloof town hall. But he remained the party stalwart he was, loyal to republicanism, a government based on expertise, and the party leadership. It is interesting that neither Delanoë nor his center-right opponents used the Socialist candidate’s homosexuality in an open appeal for votes. In 2007, Socialists boasted that the party’s final three presidential contenders supported the extension of civil marriage—an institution intended to promote and perpetuate republican values— to same-sex couples. Not quite a decade before, many of the Socialist deputies had failed to show up the first time the Pacte civil de solidarité (PaCS, the French civil union law) was up for a vote in the National Assembly, causing its initial defeat.

Notes Portions of this chapter were first published in “Assassin! AIDS and Neoliberal Reform in France,” by Michael J. Bosia, New Political Science 27, no. 3 (2005): 291–308. Available at http://www.journalsonline.tandf.co.uk/openurl.asp?genre=issue &issn=0739-3148&volume=27&issue=3. 1. Act Up Paris, “Compte Rendu de la Réunion Hebdomadaire” [Minutes of the Weekly Meeting], November 18, 1997. I use the standard form for Act Up Paris, written in title case, and ACT UP in the United States, which is an acronym. The founders of Act Up Paris developed an unwieldy moniker (Agir, Conseiller, Travailler, Unifier, Protéger [Act, Counsel, Work, Unite, Protect]) to meet the requirements of a law at the time that required organizations to adopt French names. Thus Act Up Paris is not an acronym. 2. Throughout this chapter, I use the terms gay, gay and lesbian, or homosexual. This reflects their common usage in France as political categories. Queer, which is increasingly common in scholarship in the United States, has no equivalent in French. Pédé, the closest approximation, is more aptly translated as “fag.” 3. SIDA is either capitalized or written as a proper noun.

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4. According to Reed, “a benefit that accrues to any member of the group is a benefit to the entire group.” Adolph Reed, “The Black Urban Regime: Structural Origins and Constraints,” Comparative Urban and Community Research 1 (1988): 140–187, quote on page 157. Cohen elaborated on the distinction between linked fate and cross-cutting issues in marginal communities. Cathy Cohen, The Boundaries of Blackness: AIDS and the Breakdown of Black Politics (Chicago: University of Chicago Press, 1999). 5. Cathy Cohen, “Punks, Bulldaggers, and Welfare Queens: The Radical Potential of Queer Politics,” in Sexual Identities/Queer Politics, ed. Mark Blasius (Princeton, NJ: Princeton University Press, 2001). 6. For reviews of these arguments, see Jeremy Jennings, “Citizenship, Republicanism, and Multiculturalism in Contemporary France,” British Journal of Politics 30, no. 40 (October 2000): 575–597, and Cécile Laborde, “The Culture(s) of the Republic: Nationalism and Multiculturalism in French Republican Thought,” Political Theory 29, no. 5 (October 2001): 716–735. Specific advocates of this line of reasoning include Régis Debray, Que vive la République? [So the Republic Shall Live] (Paris: Broché, 1989); Christian Jelen, “La Régression multiculturaliste” [The Multiculturalist Regression], Le Débat 97 (1997): 137–143. 7. Dominique Schnapper, La communauté des citoyens: Sur l’idée moderne de nation [The Community of Citizens: On the Modern Idea of the Nation] (Paris: Gallimard, 1994); Joël Roman, “Un multiculturalisme à la française” [A French Style Multiculturalism], Esprit 2, no. 2 (June 1995), 145–160; Michel Roux, “Le paradoxe des identités” [The Paradox of Identities], in La Citoyenneté dans tous ses états [Citizenship in All Its States], ed. Said Bouamama, Albano Cordeiro, and Michel Roux (Paris: L’Harmattan, 1992); Jean Leca, “La démocratie à l’épreuve des pluralismes” [Democracy Tested by Pluralism], Revue Française de Science Politique, April 1996, 225–279; Alain Touraine, Can We Live Together? Equality and Difference (Stanford, CA: Stanford University Press, 2000). 8. Jean-Michel Normand, “Les homosexuels veulent constituer une communauté reconnue: Sur le modèle américain, la Gay Pride française veut parvenir à structurer davantage son milieu et à organiser une population confrontée au sida” [Homosexuals Want to Be Recognized as a Community: Based on the American Model, French Gay Pride Works to Improve the Social Environment and Organize a Population Confronted by AIDS], Le Monde, June 24, 1994, 10; René De Ceccatty, “Homo, oui, ghetto, non” [Gay, Yes; Ghetto, No], Le Nouvel Observateur, January 22, 1998; Marie Thérèse Guichard, “Homosexuels: La tentation du ghetto” [Homosexuals: The Temptation of the Ghetto], Le Point, April 27, 1996. 9. Former minister Jean-Pierre Chevènement, quoted by Act Up, in an April 17, 1998, statement. Act Up was demonstrating against the minister’s expulsion of sanspapiers [undocumented immigrants]. See Act Up Paris, Compte Rendu de la Réunion Hebdomadaire, April 14, 1998. 10. The first claim is found in the transcript of the testimony of former health minister Edmond Hervé, given during the investigations of the high court. Cour de Justice de la République, Commission d’instruction, procès verbal d’interrogatoire, September 30, 1994. The second is quoted from Philippe Mangeot, “Où sont les pédés” [Where Are the Fags?], Action 59, March 1, 1999. 11. Frédéric Martel, Le Rose et Le Noir [The Pink and the Black] (Paris: Seuil, 1996). The title is an obvious reference to the pink triangle on a black shield popularized by ACT UP New York, which first appeared at gay pride in Paris in 1987 and which Act Up Paris imported in 1989 for T-shirts, banners, and flags. The most recent edition is illustrated with a photo of this specific icon from an Act Up Paris demon-

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stration. See also media coverage of, interviews with, and editorials written by Martel: Philippe Petit, “Le débat entre le communautarisme et le modèle républicain divise le mouvement gay français” [The Debate Between Community and the Republican Model Divides the French Gay Movement], L’Evénement du Jeudi, April 11, 1996, 100–101; Laurence Follea, “Les homosexuels se divisent sur la question du communautarisme” [Homosexuals Are Divided on the Question of Community], “De l’outrance des ‘gazolines’ à la Gay Pride de juin 1995” [From the Excesses of the ‘Gazolines’ to the June 1995 Gay Pride (“Gazolines” were a more radical faction of one of the first homosexual organizations in the 1970s)], and “Le Sida a provoqué un big bang fondateur” [AIDS Provoked a Big Bang], Le Monde, April 14–15, 1996; Martel, “Le droit à la différence conduit à la différence des droits: très forts, ensemble avec les autres” [The Right to be Different Results in Different Rights: To Be Strong, Together with the Others], L’Evénement du Jeudi, April 11, 1996, 102, “Homosexualité, communautarisme . . . et ‘idéologie’” [Homosexuality, Community . . . and Ideology], Le Nouvel Observateur, July 25, 1996, “Dans la solitude des bibliothèques gay” [In the Solitude of Gay Libraries], Le Monde, June 27, 1997, and “PaCS, la morale de l’histoire” [PaCS, The Moral of the Story (Pacte civil de solidarité, or PaCS, is the French version of civil union)], Libération, October 18, 2000, 8. 12. Martel worked for Martine Aubry, who became mayor of Lille in 2001. At approximately the same time, Aubry engaged sociologist Irène Théry to study family policy, which resulted in the defining document from the left condemning gay marriage and parenthood. Both Théry and Martel have been published by the Fondation Saint-Simon and the journal Esprit, which bring together intellectuals with Socialist politicians who favor substantive economic reforms. 13. Bertrand Delanoë, elected as the Socialist mayor of Paris in 2001, who did not mobilize an identity-based voting bloc and dismissed the need for a “gay liaison” in his administration, described himself as “homo” or “homosexuel” and, in all the coverage of his campaign that I reviewed, only once used the term “gai” as the proper name of the Centre Gai et Lesbien. 14. Frédéric Ploquin, “À Paris dans une boîte homo” [In Paris at a Gay Disco], Le Matin, June 20, 1983. Geniéve Latour, “Sida: La Nouvelle Peste” [AIDS: The New Plague], Révolution, July 14, 1983, claimed that “AIDS was born” in the United States. “Soixante-dix cas de Sida en France” [70 Cases of AIDS in France], Le Monde, July 31–August 1, 1983, noted that more than 75 percent of those with AIDS in France had visited New York at least once. In 1984, Dr. Jacques Leibowitch, one of the first involved in the response to AIDS, published the book Un virus étrange venu d’ailleurs [A Strange Virus from Somewhere Else—(when published in English, the title was translated as A Strange Virus of Unknown Origins)]. The argument was made in 1984 that in the first two years of AIDS, “all, or almost all, the cases in France were imported”: Dr. Monique Vigy, “L’inquiétant Sida” [Worrying AIDS], Le Figaro, August 10, 1984 (emphasis added). 15. “Soixante-dix cas de Sida en France.” 16. Blandine Grosjean, “Homos: la capote n’ plus la cote” [Homos: Condoms Are No Longer Popular], Libération, October 11, 2000, p. 3. 17. Dr. L. Pérenna, “Sida . . . L’autre scandale” [AIDS . . . The Other Scandal], National Hebdo, December 5–11, 1991. 18. Didier Lestrade, interview by author, Paris, November 22, 2002. 19. Christophe Martet, interview by author, Paris, October 27, 2001. 20. These two phrases comprise a key part of Act Up’s mission statement, adopted early in organizing. Act Up Paris, new member orientation materials. 21. Philippe Mangeot, interview by author, Paris, December 21, 2001.

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22. I know many at Act Up would disagree with Lestrade’s categories. I will borrow them because they do reflect a fundamental ideological division. Didier Lestrade, Act Up (Paris: Denoël, 2000). 23. “La Famille Choisie” [The Family of Choice], Act Up Paris, 1989. 24. Mangeot, quoted in Follea, “Les homosexuels se divisent sur la question du communautarisme,” Le Monde, April 14–15, 1996. 25. Bouchet, interview by author, Fontenay Sous Bois, November 17, 2001. 26. Christophe Martet, Les Combattants du Sida [Those Who Fight AIDS], (Paris: Seuil, 1993), 61. 27. Christophe Martet, interview by author, Paris, October 27, 2001. 28. In interviews and during participant observation at Act Up weekly meetings and marches, I heard these activists conceptualize their identity as “gay” or “pédés” (fags) through their view of French society, so that the commonsense values that inspired their activism were bound to their experiences as homosexuals. 29. Poll conducted by BVA. Libération, November 6, 2000. 30. Act Up Paris, Compte Rendu de la Réunion Hebdomadaire, 1992–1994. 31. Coss, interview by author, Paris, November 27, 2001. 32. Members advocated for Act Up candidacies up to and including the 2002 presidential election. Act Up Paris, Compte Rendu de la Réunion Hebdomadaire, 1997–2002. 33. Act Up’s membership has declined from the heady days of 1993 and 1994 but the organization remains active globally and influential domestically. Its contingent remains among the largest at the annual marche de fierté (pride march). 34. Act Up, “Nous Sommes la Gauche” [We Are the Left], 1997. 35. Ibid. 36. Claire Ernst, “Activisme à l’américain? The Case of Act Up Paris.” French Politics and Society 14, no. 4 (Fall 1997), 22–31. In the 1990s, organizers called the event “gay pride,” using English. The name later reverted to “marche de la fierté [pride] gaie et lesbienne” and in 2006 to la fierté LGBT (Lesbienne, gaie, bi, et trans).

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9 Shifting Priorities in US AIDS Policy Benjamin Heim Shepard

“A hopeful society acts boldly to fight diseases like HIV/AIDS, which can be prevented, and treated, and defeated,” President George W. Bush declared in his 2006 State of the Union address. The president specifically called for Congress to reauthorize the Ryan White CARE Act as well as to provide new funding to address the ongoing problems of access to care, including “waiting lists for AIDS medicines in America.” Yet a distinct ideological stamp would accompany funding. “We will also lead a nationwide effort, working closely with African American churches and faith-based groups, to deliver rapid HIV tests to millions, to end the stigma of AIDS.”1 It was not the first time the president had declared HIV/AIDS to be a top policy priority as well as the means of advancing a conservative agenda. Only three years earlier the president had argued, “We have the opportunity to save millions of lives abroad from a terrible disease,” in the January 2003 State of the Union “Seldom has history offered a greater opportunity to do so much for so many.”2 Some twenty-plus years into the largest epidemic in history, few could disagree. But many people argued that the speech had more to do with domestic politics than with compassion, especially when the president tied aid to highly ideological abstinence-only, rather then evidencebased, AIDS prevention approaches. Today, even this most conservative of US presidents can bolster his credentials as a humanitarian by associating his administration with the struggle against global AIDS.3 Yet from the earliest days, a push and pull between competing ideologies has characterized the policy debate about HIV/AIDS. HIV/AIDS policy and the politics of AIDS have always been loaded with double meanings. Although many features of HIV/AIDS policy in the United States are unique, public policy created to address the epidemic cannot be understood without considering larger social and economic trends as they influence allocation of resources, budgets, and public administration. Much of 171

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US HIV/AIDS policy has been guided by notions that people with AIDS face “exceptional” circumstances and should be treated outside of traditional public health approaches to the outbreak of disease.4 Even in the most politically conservative of times, AIDS activists have made headway when other interest groups experienced cuts. For example, the budget for the 1990 Ryan White CARE Act, which provides funds for AIDS-related services in the United States, expanded almost tenfold—from $220 million to $1.9 billion—through three presidential administrations and despite power shifts in Congress over a decade and a half.5 By 1996, the year Aid to Families with Dependent Children (AFDC) was “reformed”—meaning guarantees of funding for poor families were reduced, thereby radically transforming a cornerstone of the US social safety net—the Ryan White CARE Act was reauthorized with increased funding. This pattern shifted with the 2006 reauthorization of the Care Act, when the $2.1 billion allocation failed to come close to matching increased costs of medications, services, or expanded case loads.6 HIV/AIDS policy in the United States has never been beyond the influence of larger policy trends involving the privatization of social welfare services, expanding income inequality, the lack of nationalized health care, dwindling Social Security provisions, a housing crisis, and the inordinate incarceration of people of color and those who are poor. Not unlike the old “poor law” approach to charity work and social welfare provision, HIV/AIDS policy is still enacted with a moralizing approach aimed at social control rather than actually addressing or alleviating conditions of poverty, such as lack of housing and inadequate health care, experienced by low-income people.7 Bearing these considerations in mind, this chapter presents a brief history of advocacy around HIV/AIDS policy in the United States. This history falls into three phases: (1) community organizing and mobilization during the late 1980s, (2) treatment and legislative breakthroughs through the mid-1990s, and (3) the imposition of social control following the treatment advances of the late 1990s. As the mobilization of the late 1980s and early 1990s shifted with legislative and treatment breakthroughs—owing to the advent of highly active antiretroviral therapy (HAART)—both the issues and the methods of fighting the epidemic changed.8 As consensus about the exceptional nature of AIDS has dwindled, much of HIV/AIDS policy has shifted from tolerance to coercive approaches. For the sake of brevity, this survey of domestic HIV/ AIDS policy omits a number of issues, including blood donation, the struggle for the Global AIDS Fund, global trade policies, rural AIDS policy, and the AIDS advocacy struggles of southern states in the United States.9 Instead, this chapter focuses on events in the states of New York and (to a lesser degree) California, where the largest number of people in the United States with HIV/AIDS are found, using them to illustrate the changes in AIDS policy and the forces underlying them.

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Mobilization and Organizing The first phase of the response to HIV/AIDS involved community organizing, mobilization, and the establishment of a network of service providers to help those getting sick—primarily gay men in Los Angeles, New York, and San Francisco. Along with gay men, those at highest risk for HIV/AIDS included socially vulnerable populations such as Haitian immigrants, injection drug users, sex workers, and low-income people of color. Because of the marginalization of these populations, organizing around the epidemic took on an inherently ideological character. This organizing emerged in part as a response to the ongoing backlash against the gains of the gay liberation years of the 1970s, which AIDS threatened to wipe out. Just three years before the first reports of the disease appeared in 1981, queers10 had effectively beaten back antigay campaigns by Anita Bryant and John Briggs as well as a national movement by the Christian Right to repeal recently passed gay rights laws. Harvey Milk, one of the nation’s first openly gay public officials, was elected to the Board of Supervisors in 1977 and helped construct a San Francisco progressive coalition of gays, immigrants, and labor as part of the response to the early efforts of the new Christian Right. The nationally renowned San Francisco model of community-based care for people with HIV/AIDS emerged from this grassroots response.11 Service Provision as AIDS Activism The first AIDS service organizations (ASOs)—the San Francisco Kaposi’s Sarcoma Foundation (later renamed the San Francisco AIDS Foundation) and Gay Men’s Health Crisis (GMHC) in New York City—were born of this grassroots organizing and the concurrent contraction of the gay liberation movement. Gay liberationists had struggled throughout the 1960s and 1970s to end homophobia, not to build organizations to fight it. Both impulses can be seen in the dual missions of the early ASOs: to end the AIDS epidemic and to build organizations to better serve those infected and affected by the disease. Many ASOs struggled to function as quasi–social movement organizations, pursing the broader goal of social change through the delivery of services. ASOs, like all social movement organizations, had to contend with inherent competing ideological pressures. Their social-movement orientation was sustained by values and an emphasis on social change, whereas their agency orientation focused on caring for those in need of services with minimal resources. All the while, those involved fought to gain increased government funding on the local, state, and national levels.12 Along the way, ASOs had to contend with the challenge of blending their movement emphasis with their agency orientation, which depended on a detente with the prevailing

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institutions of a health and service bureaucracy that was often regarded as the target of AIDS activists.13 The struggle to balance these pressures would become more complex, especially as policies were adopted that increased funding for AIDS service organizations. How to Have Policy in an Epidemic The focus of much of the early prevention and service work was the urgent need to keep people alive until a cure for AIDS was found. Although the first responses to the epidemic were characterized by panic and hysteria, a primary goal of early prevention activists was to beat back the moralistic view of AIDS as a punishment from God. The fact that AIDS seemed to specifically target sexual and racial minorities, already considered outsiders in US life, only contributed to this view. Yet as routes of transmission were clarified, New York City activists Michael Callen and Richard Berkowitz worked with Dr. Joseph Sonnabend to write “How to Have Sex in an Epidemic,” a fortypage pamphlet outlining an approach to safer sex, now recognized around the world as a model that allows for both intimacy and protection. The birth of “safer sex” resulted in a novel policy approach, embraced in urban centers, to keep new infections under control until a cure could be found.14 These early years were characterized by neglect on the federal policy level. Ronald Reagan, the US president under whose watch the epidemic first exploded, failed to utter the word AIDS for the first six years of his two terms in office. This neglect translated into countless abuses on the clinical level. The first HIV/AIDS clinical trial, testing AZT, took place in 1985 and 1986. Nineteen members of the placebo group died within the first six months of this placebo-controlled, double-blind study—designed to produce the “cleanest” data—before the study was halted. The blunt reality was that the early AIDS clinical trials were designed with “a particularly nasty way of determining whether a drug worked: whether the patient died.”15 Policies Driven by Consumers, Not Professionals The treatment of people with HIV as a stigmatized group spurred the emergence of a radical advocacy movement propelled by the passionate involvement of people living with AIDS who fought the image of people with AIDS as docile “victims.” In an indicator of trends to come, Michael Callen, who had helped invent safer sex, and other people with HIV/AIDS disrupted the orderly meeting of the Second National AIDS Forum held in Denver in 1983. Their action was similar to the way Science for the People had disrupted the smug confines of scientific conferences during the Vietnam War.16 While in Denver, Callen, Bobbi Campbell, and others drafted a statement—that became known as the Denver Principles—on the rights of people with AIDS

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to enjoy civil rights, healthy sex lives, and self determination, just like everyone else. In so doing, they laid the groundwork for a people with AIDS advocacy movement that successfully challenged the prevailing hierarchical medical model of a passive patient–godlike doctor relationship. Much of the work involved in building systems of health care for people with HIV is rooted in the successful advocacy of the Women’s Health Movement, which challenged patriarchal doctors and male-dominated systems of care.17 The roots of ACT UP, born in 1987 under the rubric “ACTION = LIFE,” can be located within this work. Throughout the 1980s, the social and economic repercussions of the epidemic only escalated. The years 1985 and 1986 were marked by bathhouse closures from coast to coast, a Supreme Court decision (Bowers vs. Hardwick) that upheld state-level sodomy laws, and increased pressure from the resurgent Christian Right. In July 1986, Lyndon LaRouche introduced a California ballot initiative, Proposition 64, that aimed to quarantine people living with AIDS while barring them and those at risk from a range of jobs. Proposition 64 lost by a wide margin that November, but the attack it represented was very real.18 Recognizing that no one else would do the work, queer activists pushed back.19 The initial service-oriented mobilization around the epidemic was followed by a second angrier wave in the late 1980s that gave birth to ACT UP, the Names Project, World AIDS Day, and a wide range of grassroots political actions.20 Activist Richard Elovich recalled some of the disruptions that put the medical bureaucracy on notice: My engagement began when, as a representative of ACT UP’s Treatment and Data Committee in 1989, I heard a researcher dismiss addicts as a “noncompliant population” while explaining why they were not represented in clinical drug trials. I remember standing up in an auditorium at the New York Academy of Medicine, not three blocks from the methadone clinic where I had been a client seven years before, identifying myself with other addicts and challenging this notion. I’d stood often in front of audiences as a performer, but never before as a heroin addict in recovery.21

The point was that effective activism could be thought of as a public performance, with audiences including policymakers, allies, and the public.22 ACT UP helped create a sense that the AIDS crisis required action by policymakers. To do this, its work was marked by a theatrical flair. Building on the lessons of the US civil rights movement, ACT UP cultivated a creative tension that stimulated action. When faced with a policy impasse, the group made use of effective disruptions—such as the interruptions of formal policy bodies that Elovich described—that broke down barriers to proactive policy formation. These disruptions created the climate in which policymakers felt compelled to move. 23 To be successful in dealing with the health crisis, activists realized that they needed to challenge a medical model that sought to control people, all the while

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forcing them to wait for the bureaucracy to work. While some died waiting, others created a new approach to HIV/AIDS prevention that sought to meet gay men, drug users, prostitutes, and others at risk where they had sex, shot up, and made a living. Syringe-exchange policy was born within this milieu. The case of syringe exchange incorporates ACT UP’s use of street theatrics, a sense of urgency, and political savvy to achieve a desired policy outcome. As Richard Elovich recalled: “When the city’s pilot needle exchange program became so politicized that it was shut down in 1990, ACT UP founded an illegal program, jokingly referred to as its longest running civil disobedience.”24 Throughout the late 1980s and 1990s, ACT UP successfully redeployed the Gandhian/civil rights era repertoire of nonviolent civil disobedience techniques to fight for effective therapies for people with HIV/AIDS. With the mantra “drugs into bodies,” the group successfully fought for treatment, services, and expedited approval of HIV/AIDS drugs. Elovich elaborated on the dramaturgical approach used to advance policy goals in the area of syringe exchange: “Operated entirely by volunteers, we performed weekly, going out to distribute clean needles, condoms, and bilingual information about health services to thousands of injection drug users at risk for AIDS in the Bronx, East Harlem, the Lower East Side.”25 What emerged within this work was a practical approach to the provision of service: “Our services were informed by the theory of ‘harm reduction,’ the belief that change is not all-or-nothing, and that even incremental changes could be valuable in helping people save their own lives.”26 Having established a community-based strategy to preventing the spread of the disease, the group pushed for widespread use of this intervention. Again, the group turned to theater to stimulate a successful policy outcome. Elovich explained, “The next phase of the performance was in front of a judge. I, along with eight other AIDS activists, [was] arrested when we openly challenged the law that criminalized needle possession.”27 The activists based their defense on the legal principle that the minor legal violation of needle distribution was justified by preventing the larger harm of increased rates of HIV/AIDS among injection drug users, their families, and communities. In their defense, these activists brought extensive data and expert witnesses (drug users themselves) to testify to the lack of effective treatment and the efficacy of the syringe-exchange approach. The judge agreed with the argument, finding syringe exchange to be a justifiable medical necessity. And the state of New York legalized the exchange of clean syringes by syringeexchange programs that were monitored by the state Department of Health in 1990. Despite a federal ban on syringe exchange and other frank approaches to HIV/AIDS prevention,28 needle exchange became an established approach to HIV prevention work. As data poured in, needle exchange was embraced by many health professionals, and even a few politicians.29 From 1987 through 1995, ACT UP led the second wave of AIDS activism. The group’s victories resulted in more responsive public policies

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involving expedited Food and Drug Administration (FDA) approval of lifesaving HIV drugs, a successful drive to push the first Bush administration to expand the definition of AIDS to reflect the different ways the disease affects women, the recognition that housing is an AIDS issue, and the adoption of harm reduction rather than moralist approaches to HIV prevention. The push for a more humanistic policy strategy toward containing the disease was a core component of ACT UP’s work. When the AIDS epidemic first began, traditional approaches toward the outbreak of unknown diseases called for tracing contacts, reporting names, and implementing other policies that compromised the civil liberties of those with disease. Conservative commentator William F. Buckley even proposed that people with HIV/AIDS be tattooed.30 Yet AIDS activists suggested that circumstances around the AIDS epidemic were unique; thus they required exceptional treatment approaches. The term AIDS exceptionalism was born from this idea. Within this policy framework, anonymous HIV testing, rather than contact tracing, became the standard practice across the country. With AIDS activists playing a watchdog role, AIDS exceptionalism thrived, yet not without its ongoing battles. In the late 1980s, for example, Stephen Joseph, then head of the New York City Department of Health, called for mandatory HIV testing and heavy crackdowns on prostitutes, thinking queer New York would not fight his attacks on the most disenfranchised. In addition, Joseph proposed that the Department of Health report the names of all those who tested HIV positive and contact their sexual partners. ACT UP member Jim Eigo organized the response to this proposed policy, leading an ACT UP affinity group that picketed all of Joseph’s appearances. When every AIDS and gay-lesbian-bisexual-transgender organization in the city opposed names reporting, then-mayor Ed Koch, worried about the political fallout, pulled the proposal.31 ACT UP’s strategy of identifying clear goals, organizing around those goals, and using the momentum of a social movement allowed the group to mobilize resources to influence countless HIV/AIDS policies and their implementation across the United States.

Legislation, Treatment, and the Rise of the AIDS Industry The late 1980s through the mid-1990s witnessed the advancement of a number of public policies, laws, and services, followed by successful treatments for people living with HIV/AIDS who could afford the drugs. Among these were the passage of the Ryan White CARE Act in 1990, the passage of the Housing Opportunities for People with AIDS (HOPWA) Act in 1992, the approval of state syringe-exchange laws across the country, and the consolidation of the Department of AIDS Services (DAS) in New York City in 1996. The Ryan White CARE Act distributes federal moneys to community-based AIDS serv-

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ice organizations, following the San Francisco model of AIDS service delivery.32 The act includes the AIDS Drug Assistance Program (ADAP), which pays for medications for people with HIV/AIDS. HOPWA is a program of the US Department of Housing and Urban Development (HUD) designed to provide federal funding for housing and supportive services for people living with HIV/AIDS. HOPWA was a response to organizing by groups, including the ACT UP affinity group Housing Works, which insisted that adequate housing was an AIDS issue.33 Although the Ryan White CARE Act was perhaps the most sustained expansion of the US social safety net since 1981, many viewed it as a shortterm solution to the AIDS crisis. As advocates translated their gains into funding, many groups became not-for-profit organizations, and grassroots activists bemoaned their movement’s co-optation. Social services supplanted advocacy as many organizers shifted from critique to coexistence with the advent of funding and the election of a potentially sympathetic new Democratic presidential administration in 1992. The pattern is not unfamiliar.34 Funding often has the effect of creating a means-ends inversion as policymakers focus on continued funding rather than alleviating the issue or problem—AIDS, poverty, lack of housing—for which they had sought money in the first place. As Joel Handler and Yeheskel Hasenfeld noted: “The welfare bureaucracy itself becomes a powerful interest group aimed to preserve and enhance itself.”35 As the AIDS epidemic progressed, many ASOs began orienting themselves toward perpetuating their existence over the long term rather than calling for a cure. This shift necessitated building stronger infrastructures to support increased funding viewed as necessary for service provision.36 A definitive battle of the second decade of AIDS activism involved the institutionalization of the epidemic. Government subcontracting can offer nonprofits fair and manageable means with which to provide services, but in other cases these contracts can function as a tool of demobilization. To build infrastructure and accommodate funding requirements, many organizations look to the insights of professionals instead of to their grassroots bases. Daniel Patrick Moynihan described this phenomenon as the “professionalism of reform.”37 The process unfolds as advocacy groups come to favor administrative remedies over grassroots mobilization and direct action. Countless movements—including the civil rights, environmental, and consumer movements—witnessed this pattern in their organizations in the 1970s as lobbying and legal strategies supplanted community organizing. The result was an approach that favored the work of elite professionals instead of the rank and file.38 Although ASOs do follow this trend, there are those that buck the trend. Direct action and community mobilization helped secure many of the funds necessary to address the needs of people with HIV/AIDS. Other organizations such as New York’s Housing Works, a spin-off from the ACT UP

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Housing Committee and the country’s largest minority-controlled ASO, have used direct action to complement its service provision aims. Although provision of individual services historically presented a major dilemma for social movement organizations, Housing Works is part of a trend that suggests direct-action political advocacy is consistent with, and even a necessary component of, service provision.39 Perhaps the greatest shift in the HIV/AIDS policy environment occurred in the summer of 1996. The Eleventh International Conference on AIDS, held in July 1996 in Vancouver, British Columbia, brought news of the first significant progress in treating people with HIV/AIDS. Although no cure was announced, the breakthroughs of 1996 helped push HIV disease that much closer to becoming a chronic, manageable condition. Manageable, that is, if you lived in the developing world and could afford the new medications. ADAP programs were pushed to their limits to pay for expensive new protease inhibitor drugs. After fifteen brutal years and a previous international AIDS conference in 1994 that had produced little more than a call for reassessment, Vancouver offered real hope and a new set of policy questions. Who would have access to care? Where would financially impoverished people with AIDS, who had once died rapidly, live for the long term? In the ensuing years, housing and mental health issues would increasingly top the domestic HIV/AIDS policy agenda. The ethical imperative of AIDS activism has always been that health care is a right and that the US health-care delivery system is deeply flawed. While many activists were pushing for a cure for AIDS, others were working toward a more universal goal of health care for all during the first years of the Clinton administration. Yet the shift from conflict to coordination was anything but smooth. Many contend that ACT UP failed to adapt to the shift in the political environment that accompanied the election of Bill Clinton as president in 1992. Former ACT UP member and founder of Treatment Action Group Mark Harrington recalled that: 1992 was a really interesting transition. A lot of people were really involved in activism. Even up till the day before the election of Clinton, the day of the election we had a political funeral where we delivered Mark Fisher’s body to Bush headquarters here in New York. I don’t think that anyone really thought that Clinton would win. And when he did win, I don’t think most activists were prepared from a policy landscape for how to push forward in this new environment. And so on issues like health care there really wasn’t a push from the left or the progressive side of the streets in terms of demanding national health care. Everybody acted like all of a sudden we lived in a socialist Western European State, where the state would put more money into AIDS and Clinton would take care of you. And everything would just be fine. And they didn’t create enough support around policy changes around say the immigration issue or needle exchange or many other things. While research did very well under Clinton, a lot of the basic activist issues

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or prevention didn’t bear so well. And now we’re back in the situation, in many ways quite dire, of course now we have highly active antiretroviral therapy.40

By the end of 1994, the Clinton health care initiative died in committee in a Congress controlled by Democrats. The same pharmaceutical companies that ACT UP had long fought worked with the American Medical Association, the insurance industry, and political conservatives to generate a climate of fear that helped sink the proposed Clinton health-care plan. After the 1994 midterm elections, the Republican Party took control of the 104th Congress, and universal health care was put on the back burner of the national policy agenda. At the same time, the state of California passed its “three strikes” law that mandated automatic jail time for three-time offenders, regardless of the crime. The law set in motion a nationwide reallocation of resources from social services and education to criminal justice and the prison industry.41 In the coming years, AIDS policy would find itself becoming less and less of an exception to these larger policy trends. National health care had been a cornerstone of an approach to domestic policy designed to reconstruct and politically fortify the US social safety net by providing expanded earned-income tax credits to reduce poverty, government funding for child care and health care, and only then time limits for services.42 In 1995, President Bill Clinton abandoned this ambitious agenda, declaring that “the era of big government is over.”43 The following year, the president signed away AFDC, a cornerstone of the US welfare system, and replaced it with Temporary Assistance to Needy Families (TANF). TANF ensured lifetime limits of five years to those on public assistance with few of the supports, such as government funding for child care or universalized health care, that could make the transition from public assistance to work manageable.44 As AIDS became more and more entwined within the mosaic of US poverty, the shrinkage in approaches provided by the US welfare state for broad-based antipoverty policies increasingly affected people with HIV and their families. Shortly after Clinton’s reelection in 1996, Robert Reich, a primary architect of the unsuccessful Clinton blueprint for a renewed social safety net, bid Washington adieu with a last word on US social policy. Reich warned that no social problem facing the country was more important or vexing than the gap between rich and poor.45 Yet domestic social and economic inequalities only widened during the 1990s economic expansion, and poverty rates and the number of uninsured Americans only increased with the economic downturn during the ensuing Bush administration years.46 Urban health mirrors overall socioeconomic health in countless ways.47 “HIV tracks along all the fault lines of political economy and culture of the planet,” Jeanne Bergman, a veteran AIDS and human rights activist, now with Health GAP, explained. “All health issues generally do but AIDS because of its connection specifically to

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drugs and sex and sex work more than most things. And because it kills it’s sort of super heated in a way that some other public health issues are not.”48 Yet few involved with AIDS service provision were thinking in such structural or cultural terms, beyond “getting another piece of the pie” during Ryan White funding reauthorizations.49 In the fall of 1997, Project Inform, a San Francisco–based HIV/AIDS treatment advocacy group, released a position paper calling for a recognition that the US system of health-care delivery continued to be a disaster, regardless of AIDS funding. The paper noted that although there had been a revolution in treatment for people with HIV/AIDS, there had been no similar innovative thinking about the future of AIDS services. Instead, many once-radical AIDS activists had been “bought off by the special programs and funding erected in response to our crisis-driven advocacy.”50 Much of AIDS funding was based on the idea of AIDS exceptionalism and powerful interest groups’ support for a unique continuum of services for people with HIV/AIDS. Yet people with other chronic illnesses, such as cancer, did not enjoy similar levels of funding and services. Without advancing the idea of national health care for all Americans, it was hard to imagine AIDS funding lasting. While such programs may meet the individual needs of people in crisis, they do not solve the underlying problems that made AIDS such a crisis in the health care system. AIDS put the deficiencies of the system in the spotlight. But instead of fixing the system, we ended up settling for a literal sideshow of programs, while leaving the system as deficient as ever. We may have gotten the basics of what was needed for some people with AIDS, but lost the opportunity to solve the problems on a larger scale.51

Instead of focusing on renewing ADAP and Ryan White funding, Project Inform called for AIDS activists to work in coalition with advocates for people with other chronic diseases “to create solutions which can last a lifetime,” without leaving people with HIV/AIDS perched on the fragile political limb of annually renewed programs and services. Jeanne Bergman, who worked as policy analyst with Housing Works during the latter half of the 1990s, suggested that discussions of AIDS exceptionalism must also address issues of social inequality. Even with AIDS exceptionalism, disparities in economic resources among affected populations determined access to care. “Privileged people” found easy “access to care, in contrast to the denial of the most basic human needs that poor people got,” Bergman explained. Nowhere was this inequality more glaring than in the provision of housing services. “With the New York City Department of AIDS Services (DAS), that was so intense,” Bergman explained. She continued: DAS was created because a class of young men, who were accustomed to living well, were getting sick and could no longer afford their homes and the

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way they had been living. And unlike other poor people, these men were basically designated exceptional. And they could get a rent allocation of $2000.00 a month, something unheard of for somebody who is poor. I think everybody should get that. But the racism of this system and the classism of this system, it would so baldly recognize the needs of these wealthy white gay men who were categorically deserving of a higher level of tax payer support and just funding. What it was created to be and what it came to be were two totally different things. The whole point of DAS initially was to spare white gay men from the indignities of the welfare system. At the time, as the recipients of benefits changed, it became actually more of a barrier than a point of access. But initially, if everybody who was sick could get their entitlements more easily that would have been Heaven but it’s not what it was intended to do.52

As HIV/AIDS affected higher and higher percentages of communities of color, inequalities in access to health only became more pronounced. As people with HIV came to be seen as more and more from low-income communities of color rather than privileged affluence, policies shifted from exceptionalism toward systems of monitoring, reevaluation, social control, and criminalization.

Social Control With the failure of AIDS advocates to embrace a universal health care strategy— and with no cure in sight—HIV/AIDS policy became a victim of larger policy trends, including expanding income inequality, criminalization over prevention, increased surveillance, privatization of services, and a growing federal deficit that made the advancement of bold social policy nearly impossible.53 Clinton’s two terms in office concluded with national health care far off the national political agenda as George W. Bush became president in 2001. Within this policy vacuum, HIV/AIDS policy increasingly promoted control of those who utilized AIDS services. Although much of the foundation for the legislative gains in the area of HIV/AIDS services was created within a context of crisis, the advent of HAART, an effective HIV/AIDS treatment relying on “cocktails” or groups of medications that prevented HIV from spreading in the body, basically transformed HIV disease into a chronic condition for those who could afford treatment, preventive health services, and housing. As the crisis mentality crumbled, so did the liberal consensus supporting funding for HIV/AIDS service provision and tolerance for frank HIV prevention messages, even on a local level. Debate Around Safer Sex Policy The shift in prevention policy began with news of a second wave of HIV infections in the mid-1990s. Accumulating data confirmed what advocates

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already knew: that many were rejecting the “wear a condom or beat it!” and “safe sex is hot sex” slogans that had become the cornerstones of the safer sex movement.54 Along the road, the trend of gay men telling their funders what they wanted to hear—that they had given up promiscuity—began to fade.55 Wearing a condom for every sexual act for a lifetime was an incredibly complex endeavor. Many admitted that the “wear a condom every time” ethos of the mid-1980s was proving difficult to sustain over the long term. And these challenges to prevention were occurring at a time when the gap was widening between social justice–minded queers who saw the epidemic spreading around disparities of sex, race, class, and gender and assimilationist-minded gays living longer, healthier lives.56 The 1995–1998 period was marked by struggles over the right direction for HIV prevention policy as one report after another detailed increased rates of HIV transmission.57 Questions about HIV prevention spurred a public debate akin to the “sex wars” over pornography and sexual choice that took place among feminists in the United States from the late 1970s through the early 1990s. Much of the debate began after the 1996 Vancouver AIDS conference, as reports emerged that new combination antiretroviral drug regimens, including protease inhibitors, could reduce HIV to undetectable levels in the blood. The New York Times reported that the new viral load tests presented a challenge to HIV prevention efforts. The story implied that a new cohort of young men now assumed that if viral loads were low, then HIV was no longer active in the body and one could have unprotected sex. The story was fraught with misconceptions. In it, AIDS activist and ACT UP founder Larry Kramer condemned this view: “If you test low on the PCR [viral load test], some people are using this as an excuse to literally go out and have unsafe sex again, assuming incorrectly that they have no more virus in their system.”58 In early 1997, the New England Journal of Medicine reported that 26 percent of HIV-negative men were less concerned about HIV risk than they had been before recent treatment advances. Furthermore, 13 percent said they were willing to take more chances than they had taken in the past, and 15 percent conceded they had already done so.59 Although troubling to many, these reports infuriated a small number of gay journalists. The idea that gay sex was responsible for a new wave of infections inspired conservative gay journalists to embrace the reactionary contention that gay sexuality was dangerous not only for homosexuals but also for society at large.60 Shortly after the Vancouver conference, conservative gay commentator Andrew Sullivan published an essay, “When Plagues End,” that suggested that AIDS was basically over now that gay men had access to treatment. By making the social, political, and economic violence of HIV/AIDS epidemic appear a thing of the past, the essay set ACT UP’s work back by a decade. Sullivan’s essay spoke to problems of history and memory. What would be the lessons of the AIDS crisis years? According to Sullivan, only with AIDS did

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gays gain respectability, despite the “irresponsible outrages of Act-Up.” Sullivan openly worried about the “post-AIDS” gay lifestyle, noting that “people feared that the ebbing of AIDS would lead to a new burst of promiscuity, to a return to the 1970s in some joyous celebration of old times.” The question was, would the notions that “queer sexuality equals contagion” and that gay men needed to be domesticated be the legacy of the crisis years?61 Gabriel Rotello, a gay New York journalist whose book, Sexual Ecology, was to be published the following year, suggested that they would be. “A very effective way to reduce the contact rate is to make relationships more attractive,” he explained shortly after the Vancouver conference. “One of the best ways to do that is to show people how they can exist as couples safely.”62 A number of prevention and advocacy groups—including one that dubbed itself SexPanic!—formed to respond to this reactionary thinking. SexPanic! member Kendall Thomas responded to Sullivan’s message thus: “I simply reject the narrative about disco balls and loud dance music providing the undercurrent for this almost Dionysian story of infection because it suggests to me that gay men, rather than a virus, led to this epidemic.”63 For Thomas and other social justice–minded activists, the unfolding events looked like the makings of a sex panic. A cornerstone of the group’s response was to challenge the idea of “good gay’ versus ‘bad gay,” promiscuous queer versus responsible gay man, worthy versus unworthy persons with AIDS. A split between the worthy and the unworthy characterizes much of the history of US social policy. Although the “worthy poor” typically receive sympathy and support, the “unworthy poor” are left to fend for themselves. The latter are seen as morally weak for indulging in habits different from those of the majority. Thus, they get what they deserve.64 The same process unfolded as “worthy” people with AIDS, who contracted HIV from blood transfusions or before transmission routes were clarified, were distinguished from “unworthy” drug users and those who had unsafe sex despite “knowing better.” Like most of this country’s social problems, this split is accentuated by race, gender, and income inequality.65 Along the road, HIV/AIDS policy was shifting from shades of gray to black and white terms. Race, Prevention, and Criminalization One part sex, another part race, and a third part misinformation propelled a panic that transformed the public response to the epidemic in the late 1990s. A key undercurrent involved the changing demographics of the epidemic. Race, sex, and notions of “otherness” have always played a complex role in the formation of HIV/AIDS policies. Majority Action, an affinity group of the original ACT UP/New York, contended that people of color had always comprised the majority of HIV/AIDS cases. Yet only in the mid-1990s did HIV/AIDS policy respond to this reality. As AIDS epidemiology shifted, the

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disease and the policies surrounding it became ever more racialized. Yet this was more of a continuation of a long-standing trend. Elements of class, race, and heterosexism have always contributed to denials, secrecy, and blame around the epidemic. In the early days of the epidemic, ethnic groups felt safe around an epidemic, which the media projected as affecting mostly gay white men. This denial continued when new “at risk groups” included communities of color and intravenous drug users. Along the road, differing groups continued to feel “safe” because of appearances that their group was no longer affected. Given the stigma and shame over high-risk behaviors—including unsafe sex, injection drug use, and nonmonogamy—these groups did not adequately examine at-risk behaviors that continued to place them at risk.66 The shifting demographics of the epidemic created a unique set of political challenges as issues of race, sex, and homophobia made further effective mobilization around the epidemic more complex.67 Studies suggested that African Americans accounted for more than half of new AIDS cases, with people of color making up an increasing percentage of those infected with HIV. While injection drug use became the predominant mode of transmission among African Americans, black men who did not identify as “gay,” yet had sexual contact with other men, were also a factor. Stories about “down low” men bringing the epidemic home to their wives triggered age-old anxieties about predatory, overly sexualized black men. These stories, in turn, gave journalists fodder to “manufacture drama” about “dangerous black men attacking women.”68 In 1997, these tensions found their own scapegoat. News reports that year were dominated by stories about Nushawn Williams, a young African American man who was said to have knowingly had unsafe sex with a number of women in upstate New York. One tabloid labeled him “the One Man AIDS Epidemic.”69 On September 5, talk show host Geraldo Rivera addressed the topic in a segment of his CNBC program entitled “Privacy for Predators, We Ask?”: The AIDS assassin, so-called, ah . . . alleged, Nushawn Williams. The latest on his story and what his story has done to affect confidentiality in the midst of the AIDS epidemic. Nushawn Williams, the nightmare of the 90s, the Willie Horton of the AIDS epidemic, the alleged AIDS assassin who has allegedly been spreading the HIV epidemic across a 300-mile swatch of New York State, probably infecting dozens of women. . . . What about syphilis? What about tuberculosis? Why is AIDS so different, especially now that it has become a treatable condition? Why have we, because of political pressure, singled out this one disease as having special privileges? AIDS has lost the reason to be treated differently, that is my belief. There is no difference between AIDS now than any other chronic conditions.70

Rivera’s discussion offers a glimpse of the ways the issue of race and sex undermine the case for AIDS exceptionalism. Later in the show, Rivera asked

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conservative commentator Ann Coulter why she had advocated tattooing the genitalia of people infected with HIV. Despite “the Nazi associations,” Coulter suggested, “in a way it actually deals with a lot of the concerns: having your employers know, having your friends know, having your family know.” After all, Coulter explained, “the only person who knows is the one point of contact where you can transmit a deadly disease . . . um . . . there are labels on mattresses, on hamburger meat, on cigarettes.”71 As debate about Williams’s actions swirled, he came to embody many of the tensions around AIDS exceptionalism, civil liberties, effective HIV prevention, criminalization of HIV transmission, and calls for mandatory names reporting of HIV-infected individuals. Predictably, backlash followed. New York State Assembly member Nettie Mayersohn proposed legislation calling for fifteen-year prison sentences for “knowingly exposing a partner to HIV.”72 The year 1998 produced the gravest legislative threats to the AIDS community since the earliest days of the epidemic. In the months after the Williams case came to light, GMHC shifted its position from opposition to acceptance of name-based HIV reporting. In response, the New York–based Hispanic AIDS Forum, the American Civil Liberties Union (ACLU), SexPanic!, and ACT UP argued that names reporting would eliminate anonymous testing and thus would discourage many from seeking treatment if they knew their names would be reported to the government. In the days following GMHC’s policy shift, consensus about the need for civil liberties for people with HIV/AIDS was lost. The AIDS advocacy community split between civil liberties advocates, such as ACT UP and SexPanic!, and those, such as GMHC, that depended on federal moneys with strict stipulations.73 Despite community outrage, policy forums, pickets at the New York City HIV Planning Council, and activists who chained themselves to the offices of the New York City Health Department, names reporting and mandatory contact tracing became state law.74 New York State, with the largest HIV/AIDS caseload in the United States, is considered a trendsetter for HIV/AIDS policy. Its shift paved the way for the adoption of names reporting by other states. In the wake of the Nushawn Williams case, HIV criminalization swept the country. By 2000, laws penalizing failure to disclose HIV status to a partner (even if having protected sex) were on the books in Alabama, Arkansas, California, Connecticut, Florida, Georgia, Idaho, Illinois, Indiana, Iowa, Kansas, Louisiana, Maryland, Michigan, Minnesota, Missouri, Montana, Nevada, New Jersey, North Dakota, Ohio, Oklahoma, South Carolina, Tennessee, Texas, and Washington. 75 In some locales, prostitution consequently was prosecuted as a crime equal to attempted murder if HIV was involved. As Lawrence O. Gostin, director of the Georgetown University–Johns Hopkins Program on Law and Public Health, noted: “We’ve moved from a period where civil rights and civil liberties for a person with HIV prevailed to a compulsory and punitive approach.”76

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AIDS Policy, Surveillance, and the Therapeutic State Without the help of a mobilized queer constituency, consensus around AIDS exceptionalism, safer sex, and safeguards for the civil liberties of people with HIV/AIDS faded. Instead, AIDS services became part of the increasingly contested political terrain. Andrew Polsky described the process: “We—officials and citizens alike—look to public human services to deal with forms of distress that arouse our compassion by altering forms of behavior that unnerve us. Inaction in the face of, say, family violence is unacceptable, and we are at a loss for other policies to address the situation. We therefore invite public authority to probe the inner recesses of people’s lives.”77 Instead of exceptionalism, people with AIDS were increasingly treated to the “rituals of degradation and surveillance” that accompany people who have traditionally been included on the public welfare rolls.78 In the ensuing years, policies around names reporting, case surveillance, and AIDS criminalization exploded across the country. As aid was translated into an arena of control, those dependent on public services were most affected. Public assistance in the United States historically has been aimed at promoting “traditional” family norms. Critics describe the process as “public patriarchy.” This normalizing effect extends itself as the state battles deviance among those in the public arena.79 After 1996, HIV transmission was increasingly approached as a deviant act deserving punishment and state surveillance. Much of the shift in HIV/AIDS policy can also be attributed to funding pressures. From 1995 to 1996, federal funders, including the Center for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA), proposed a move from mathematical models based on percentages of AIDS cases to more specific case counts. Until this point, AIDS counts had been based on estimated cumulative numbers with a degree of repetition. The CDC and HRSA wanted more accurate information and data on which to base future Ryan White CARE Act allocations, changing the way states and urban areas received moneys. Name-based reporting policies soon followed. “The result was really damaging,” recalled Keith Cylar, copresident of Housing Works, the nation’s largest minority-controlled AIDS service organization. “This was where all the criminalization and labeling everyone started.”80 Along the road, HIV/AIDS policies shifted away from tolerance and toward coercion and increased surveillance from federal and state funding agencies. Formalizing the process, the CDC announced in April 2003 that the federal government was shifting its emphasis away from preventing new infections in at-risk populations toward expanded testing of people with HIV and their partners. The new initiative would focus on encouraging testing and targeting of HIV-positive people to minimize the spread of the virus. Critics quickly challenged the new approach. The National Association of People

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With AIDS (NAPWA) suggested: “Major parts of this initiative appear to respond more to political pressure from the far right than the prevention needs of communities threatened by HIV/AIDS.”81 For many, the initiative’s emphasis on targeting those already HIV positive smacked of control more than prevention. The CDC confirmed these fears in its April 18, 2003, Morbidity and Mortality Weekly Report: “Although many persons with HIV modify their behavior to reduce their risk for transmitting HIV after learning they are infected, some persons might require ongoing prevention services to change their risk behavior or to maintain change (emphasis added).”82 Thus community-based organizations funded by the CDC were specifically charged with using their relationships with clients to “elicit number of partners and contact information” for sex or drug use partners during ongoing partner counseling and referral services. The aim of such services was “advancing communication . . . with previous and current partners.”83 Service providers were put in a double bind. Although they realized that funding was at stake, they also recognized that clients may disengage when counseling services are used to “elicit” intimate information. The CDC’s new policy harkened back to the benevolent investigative methods employed by nineteenth century social work “friendly visitors” during home visits. The assumption was that those receiving public assistance needed counseling and rehabilitation rather than the same privacy rights enjoyed by other citizens. At its worst, this surveillance of poor people manifested itself in a series of degrading inquiries into the sex lives of women. Typical questions included “When did you last menstruate?”84 Names reporting played on the same power of levels of stigma and intimidation, providing CDC-funded service providers surveillance powers not unlike those of the police.85 The policy presents a case study for Foucault’s critique of the state’s power over bodies. The argument is familiar enough. By the eighteenth and nineteenth centuries, professionals sought to identify and control the mechanisms of interior life, memories, and so on.86 For many people, it is impossible or painful to recall the names of past sex or drug use partners. For others, the risks of reporting the names of sex or drug use partners may include domestic violence or loss of home, family, and shelter. Nevertheless, the CDC emphasizes “counseling” and “eliciting” names. Prevention activists have long suggested that both partners should use safer sex protection and that HIV prevention works best without governmental interference, but the new CDC initiative flew in the face of such community-basedpractice approaches.87 Despite these deficiencies, this invasive approach only continued with CDC initiatives such as Program Evaluation and Monitoring System (PEMS).88 HIV names reporting represented one piece of a larger public health trend resulting in social control over health and reproductive choices. Two days

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after taking office, Bush reenacted a Reagan-era gag rule (known as the Mexico City policy) banning US aid to international reproductive health or family planning service providers that offer any information about abortion.89 At home, the administration emphasized abstinence-only prevention approaches, despite little or no data showing that they are as effective as comprehensive sex education.90 The Bush administration’s emphasis on ideology over evidence was becoming a familiar pattern.91 In 2003, the administration removed language about the well-tested efficacy of condoms as a means of preventing HIV from the CDC’s Web sites. But that was just the beginning of an all-out assault on evidence-based HIV prevention programs. Throughout its term, the Bush administration has underfunded comprehensive HIV prevention programs, grilled researchers addressing AIDS and sexual practices, continued a ban on well-established programs such as syringe exchange (although to be fair Clinton never lifted the ban on syringe exchange), and audited AIDS service organizations receiving federal funds that rejected abstinence-based approaches.92 And those who rejected such modes of control have increasingly felt intimidated by their funders and contract managers because of these decisions.93 Welfare or Warfare State and Privatized Services On June 24, 2003, President Bush visited New York City for a fundraiser. Countless groups planned protests to highlight how Bush’s focus on war had obfuscated his very real attacks on public services and the civil rights of citizens at home. Leslie Cagan, an organizer with United for Peace and Justice, noted that “the vast sums of money spent on an illegal and unnecessary war against Iraq could have been used to protect the health of women and many others whose safety nets are getting shredded by the Bush administration.”94 It is impossible to consider the current state of HIV/AIDS policy or the broader US social safety net without considering how the current administration’s focus on war and corporate interests is leading to the deterioration of basic public services, including those for people with HIV/AIDS. Medicare and Medicaid are timely examples. Early in 2003, the Bush administration’s Medicare administrator, Thomas Scully, described the program as “an unbelievable disaster” as he laid out details of the president’s plan to move some 50 percent of seniors from Medicare into private health plans.95 AIDS activists concerned about the future of the US social safety net argued that the bill would prevent Medicaid from acting as an insurer of last resort for poor people.96 Like many struggles over services and care for people with HIV/AIDS, this battle involved a struggle between the pharmaceutical and insurance industries—which had gutted the Clinton universal health care proposal—

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who were seeking a market-based solution and those who hoped to maintain the government’s role in the provision of health and social services. For pharmaceutical companies, market-based solutions allow drug costs to escalate without limit. A drug “cocktail” for a person with HIV costs some $30,000 per year on the government’s tab for those not paying with private health insurance. In spring 2003, the FDA approved Fuzeon, the first of a new class of anti-HIV drugs. The drug’s price tag is about $20,000 per year, twice that of any other individual AIDS drug.97 While the HAART drug cocktail may amount to more per year, there has never been one AIDS drug priced at such a level. People with cancer, heart disease, and other chronic illnesses also pay steep prices for their medications. As drug prices escalate, they place an almost untenable burden on government programs, including Medicaid and ADAP. Medicaid and Medicare are the largest and the second-largest sources for health-care funding for people living with HIV/AIDS.98 Some 19 percent of all people with HIV/AIDS utilize Medicare, which in 2002 paid some $2.1 billion to cover their health care costs.99 Debate about drug prices would often dominate the AIDS policy debate. As the push for privatization of Medicaid continued, advocates argued that without a significant subscription drug benefit to help offset costs, government programs such as ADAP would become increasingly unable to provide healthcare coverage for people with HIV/AIDS. Already, many cannot obtain HIV medications owing to the vast gaps between available funding, exorbitant drug costs, and the number of people on waiting lists for benefits. In August 2003, two people in West Virginia died while on waiting lists to receive HIV medications through ADAP.100 A study by the Institute of Medicine of the National Academies of Medicine found that thousands of HIV-positive applicants for care were regularly turned away or disqualified for services each year. The report’s core finding was that the federal government should expand its role in providing treatment for low-income people with HIV/AIDS.101 Yet instead of addressing gaps in services, in November 2003 Congress approved Medicare reform heavily favoring the pharmaceutical industry while limiting the government’s ability to reduce the cost of medication. While conservatives push privatization, HIV/AIDS advocates and sympathetic policymakers have struggled to keep AIDS services exempt from the changes overtaking the health care industry. The battle over Medicare privatization points to an increasing elite influence on US social policy. Rather than expand the range of public services, “elites promote the private market as a better source than government for education, health, welfare, and benefits.”102 Devolution, decentralization, subcontracting of government services, vouchers, and privatization have come to serve as “patterns for structuring public policy.”103 For activists, privatization “represents a thin cover for the private use of public power.”104 As a result of a highly mobilized and connected constituency, HIV/AIDS policy has managed to elude the worst elements of the

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trend toward health-care privatization. An example may be instructive. In spring 2003, New York City mayor Michael Bloomberg proposed to subcontract basic case management services for people with HIV/AIDS. For AIDS advocates, the policy smacked of yet another attempt to “abdicate governmental responsibility for providing essential lifesaving services and benefits in a timely manner.”105 Still the city proposed subcontracting governmentbased case management and entitlement services into the private sector, where nonprofits could administer these services. Although there is generally nothing wrong with subcontracting basic services, there are certain things the private sector cannot do. The private sector cannot turn on and off public benefits or make decisions about eligibility criteria. Although the private sector can deliver services, subcontracting cannot replace the vital role of government in determining eligibility. In the case of New York City case management services, as has often been the case with HIV/AIDS policy in the city, a highly mobilized coalition of AIDS activists—including members of ACT UP, Housing Works, and small harm-reduction organizations—lobbied, offered counterproposals, protested, and were arrested at City Hall. Eventually the privatization proposal was taken off the table.106

Conclusion HIV/AIDS policy in the United States has undergone three distinct phases, from early mobilizations, through advances in legislation and treatment, to a control phase in which people with HIV/AIDS and community-based service providers struggle for autonomy while attempting to preserve the remains of a US social safety net and welfare state. All the while gaps in services continue to grow. In spring 2004, the Kaiser Foundation found that 1,500 people in ten states were on waiting lists to receive services of the AIDS Drug Assistance Program designed to pay for gaps in funding for life-saving medications.107 Two years later, the Public Health Watch HIV/AIDS Monitoring Project of the Open Society Institute (OSI) published a report claiming that the United States has failed to curb the disease nationwide. The report, HIV/AIDS Policy in the United States: Monitoring the UNGASS Declaration of Commitment on HIV/AIDS, presented a comprehensive analysis of the progress in domestic AIDS services and policies. Findings suggested that (1) efforts aimed at addressing the disease remain uncoordinated, with ideological conflict continuing to impede comprehensive approaches to prevention, treatment, and support; (2) some 50 percent of those in need of treatment are not getting it; (3) the rate of new infections remains consistent at 40,000 a year; and (4) the disease continues to disproportionately affect communities of color, gay men and men who have sex with men, injecting drug users, and the poor.108

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Rachel Gugli Guglielmo, of the OSI, elaborated on the disparities in infection rates: “African Americans account for half of new HIV infections in the U.S., despite being less than 13% of the national population, and AIDS is the leading cause of death for African-American women ages 24–34.” She concluded, “These are not the signs of a strong national response to AIDS.”109 The OSI suggested that a comprehensive national strategy is necessary to address these gaps in care. Such a strategy would require (1) a national focus on clearly stated outcomes, coordinated from the federal level to state and city agencies; (2) a campaign to test, refine, and deliver services to communities of color and other hard-to-reach populations; and (3) evidence-based interventions, including using proven tools such as harm reduction. Such a national strategy would make Medicaid work for poor people by overturning cost sharing and benefit caps; it would increase resources to address a range of health needs, including housing, entitlements, mental health, chemical dependency, and treatment needs; and finally, it would maintain a commitment to research efforts designed to improve on HIV prevention and treatment strategies.110 Yet, as always with HIV policy, competing ideologies impede comprehensive strategies toward treatment and care. As funding for HIV/AIDS continues on a flat line that fails to match either increases in numbers of those infected or costs of care, gaps in the HIV safety net only continue to widen. Yet activism around these problems continues. On May 20, 2004, service providers, AIDS activists, and people with HIV/AIDS converged in what was considered the largest AIDS civil disobedience action in Washington since 1987.111 The aim of the protest was to assert that “AIDS would not defeat us” while reclaiming the energy that propelled the earliest mobilizations, which helped create the AIDS safety net in the first place. The future of effective HIV/AIDS policy in the United States depends on the success of such broadbased, collaborative mobilizations.

Notes The author would like to thank Andrew Polsky, Eric Rofes, and Liz Highleyman for careful readings and suggestions for this chapter. This chapter is dedicated to two people. The first is Keith Cylar, an activist who fought to create many of the federal HIV/AIDS policies as well as to enact them within a harm-reduction setting at Housing Works, the nation’s most militant AIDS service organization. The final time I spoke with Cylar in any kind of substantial fashion before his death, he provided the short interview for this essay. The week that revisions for this chapter were due, Eric Rofes, who also offered a careful reading, died. Rofes was a giant in the Gay Liberation Movement who helped teach us that AIDS panic is no reason to forgo the lessons of Gay Liberation. The spirit of Cylar and Rofes, two big leather guys, who liked to play, runs through the impulse to turn AIDS advocacy into a broad-based human rights movement.

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1. G. W. Bush, “State of the Union Address by the President,” United States Capitol, Washington, DC, January 31, 2006. Available at http://www.whitehouse.gov/ stateoftheunion/2006/index.html. 2. Ibid. 3. Nicholas D. Kristof, “When Prudery Kills,” New York Times, October 8, 2003. 4. Chandler Burr, “The AIDS Exception: Privacy vs. Public Health,” Atlantic Monthly 279, June 1997. 5. Health Resources and Services Administration, Ryan White CARE Act Title I Manual, 2003, 3. Available at http://hab.hrsa.gov/tools/p1.htm. 6. Paul Schindler, “Ryan White Finally Reauthorized,” Gay City News. December 14, 2006. Available at http”//gaycitynews.com/site/news.cfm?newsid=17592566 &BRD=2729&PAG=461&dept_id=590556&rfi=6. 7. The reference to “poor laws” involves the historic link between the British social welfare policy of “poor laws” and US approaches to social welfare policy that were derived from those laws. For a discussion of the link between these approaches, see Walter I. Trattner, From Poor Law To Welfare State, 5th ed. (New York: Free Press, 1995). For a discussion of the link between moralism and social welfare policy, see Joel Handler and Yeheskel Hasenfeld, The Moral Construction of Poverty (London: Sage, 1991). For an updated view of this approach referred to in this chapter, see Tony Platt, “The State of U.S. Welfare: Regressive and Punitive,” Monthly Review 55, no. 5 (October 13–27, 2003). 8. Eric Rofes, correspondence with the author, November 17, 2003. 9. J. Graham, “Fighting AIDS in Our Own Back Yard. The Body,” 2004. Available at http://www.thebody.com/asp/mayjun04/fighting_aids.html. 10. Here I use the term queer as an abbreviation for gay, lesbian, bisexual, and transgender (GLBT) communities, especially in the case of the communities who fought antigay initiatives. Throughout the rest of this chapter, however, the definition of queer will be deployed with a more expansive or universalizing discourse in mind, involving not only GLBT communities but all communities who, as Douglas Crimp noted, have all become a little queerer by their experience of the stigma related to the AIDS epidemic. For a discussion of broad definitions of queer as resistance to social, economic, and cultural regimes of the normal, see Michael Warner, “Introduction,” and Douglas Crimp, “Right on Girlfriend,” in Fear of a Queer Planet, ed. Michael Warner (Minneapolis: University of Minnesota Press, 1993). For a discussion of minoritizing/universalizing views of homo/heterosexual identity, see Eve Kosofsky Sedgwick, Epistemology of the Closet (Berkeley: University of California Press, 1990). 11. Benjamin Shepard, White Nights and Ascending Shadows: An Oral History of the San Francisco AIDS Epidemic (London: Cassell Press, 1997). 12. Eric Rofes, correspondence. 13. Cheryl Hyde, “The Ideational System of Social Movement Agencies: An Examination of Feminist Health Centers,” in Human Services as Complex Organizations, ed. Yeheskel Hasenfeld, 122–125 (Thousand Oaks, CA: Sage, 1992). 14. For a discussion of the politics of the early years of HIV prevention policy formation, see Richard Berkowitz, Stayin’ Alive: The Invention of Safe Sex, a Personal History (Cambridge MA: Westview Press/Perseus Books Group, 2003). 15. Patricia Siplon, AIDS and the Policy Struggle in the United States (Washington, DC: Georgetown University Press, 2002), 25. 16. Kelly Moore, Disruptive Science: Professionals, Activism, and the Politics of the War in the United States, 1945–75 (Princeton, NJ: Princeton University Press, forthcoming).

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17. I am indebted to Spence Halpern for pointing this out. 18. John Fisher et al. A Short History of Discrimination Against Gay Men and Lesbians. Gay and Lesbian Issues and HIV/AIDS: Final Report. Montreal: Canadian HIV/AIDS Legal Network and Canadian AIDS Society, 1998. Available at www .aidslaw.ca/Maincontent/issues/gaylesbian/finalreports/glliapa.htm. 19. For a review of ACT UP’s early work, see Douglas Crimp and Adam Rolson, AIDS Demographics (Seattle: Bay Press, 1991). 20. Shepard, White Nights and Ascending Shadows. 21. Richard Elovich, “I’ll Hold Your Story, I’ll Be Your Mirror,” Artery—The AIDS Arts Forum. Available at www.artistswithaids.org/artery/symposium/symposium_ elovich.html (accessed September 2, 2004). 22. Daniel Brouwer, “ACT-ing UP in Congressional Hearings,” in Counterpublics and the State, ed. Robert Asen and Daniel Brouwer (Albany: State University of New York Press, 2001). See also Doug McAdam, “The Framing Function of Movement Tactics: Strategic Dramaturgy in the American Civil Rights Movement,” in Comparative Perspectives on Social Movements, ed Doug McAdam, John D. McCarthy, and Mayer N. Zald (Cambridge: Cambridge University Press, 1996); Benjamin Shepard, “Absurd Responses v. Earnest Politics,” Journal of Aesthetics and Protest 1, no. 2 (2003): 95–115. 23. Benjamin Shepard, “The AIDS Coalition to Unleash Power: A Brief Reconsideration,” in Left Political Movements Today and Tomorrow, ed. John Berg (New York: Rowman and Littlefield, 2002). 24. Elovich, “I’ll Hold Your Story.” 25. Ibid. 26. Ibid. For an outline of the clinical applications of this approach, see Patt Denning, Practicing Harm Reduction Psychotherapy: An Alternative Approach to Addictions (New York: Guilford Press, 2000). 27. Elovich, “I’ll Hold Your Story.” 28. In October 1987, the Senate passed Amendment 956, sponsored by Jesse Helms (R-NC), prohibiting the Center for Disease Control and Prevention (CDC) from using government money to “provide AIDS education, information, or prevention materials and activities that promote, encourage, or condone sexual activity outside a sexually monogamous marriage (including homosexual activities) or the use of intravenous drugs.” Quoted in Siplon, AIDS and the Policy Struggle in the United States. For further discussion of the politics of the Helms amendment, see Douglas Crimp, “How to Have Promiscuity in an Epidemic,” in Melancholia and Moralism: Essays on AIDS and Queer Politics (Cambridge, MA: MIT Press, 2002). 29. Much of New York City mayor Michael Bloomberg’s support for needle exchange was based on sound evidence. In winter 2003, the mayor stated: “We also will continue the practice of exchanging syringes. These programs have been operating in New York City for over ten years. The sky has not fallen. Drug use and drug-related crime have not gone up. In fact, they’ve gone down. And HIV infections among injection drug users, their spouses, and their children have also gone down. A 2002 study by the State Department of Health evaluated 13 syringe exchange programs, nine of which are in New York City, and found that these programs are responsible for at least a 50% reduction, and possibly as much as a 75% reduction, in the rate of new infection for injection drug users.” Quoted in Michael Kink, Housing Works: New York State AIDS Issues Update, March 17, 2003. Available at http://www.hwadvocacy.com/update/. 30. See William Buckley, “Identify All the Carriers,” New York Times, March 18, 1988, A27. 31. Crimp and Rolson, AIDS Demographics, 72–76.

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32. Philip Hilts, “$2.9 Billion Bill for AIDS Relief Gains in Senate,” New York Times, May 16, 1990, A1, 24. See also Shepard, White Nights and Ascending Shadows, 154–159. 33. “Housing Opportunities for People with AIDS (HOPWA),” HUD Office of HIV/AIDS Housing. Available at www.hud.gov/offices/cpd/aidshousing/programs/ index.cfm (accessed October 10, 2003). 34. Gareth Morgan noted that the links between critical theory and the study of organizations must address how ideology, information, accounting, and other organizational practices inform control of organizations. Gareth Morgan, Images of Organization (Thousand Oaks, CA: Sage, 1997), 406. 35. Handler and Hasenfeld, The Moral Construction of Poverty, 8. 36. Benjamin Shepard, “Organizational Changes in the Era of Protease Inhibitors,” unpublished Donor’s Forum Report, Chicago. 37. This pattern is clearly outlined in Daniel P. Moynihan, Maximum Feasible Misunderstanding: Community Action in the War on Poverty (New York: Free Press, 1971). 38. Matthew A. Crenson and Benjamin Ginsberg, Downsizing Democracy: How America Sidelined Its Citizens and Privatized Its Public (Baltimore, MD: Johns Hopkins University Press, 2002). 39. For a short discussion of Housing Works’ use of direct action and service provision, see B. Shepard, “Bridging the Praxis Divide: From Direct Action to Direct Service and Back Again,” in Constituent Imagination: Militant Investigations, Collective Theorization in the Global Justice Movement, ed. S. Shukaitis and D. Graeber (Oakland, CA: AK Press, 2006). For a discussion of the complementary use of direct action and service provision, see Fred Brooks, “Resolving the Dilemma Between Organizing and Services: Los Angeles ACORN,” Social Work 50, no. 3 (2005): 262–269. 40. Mark Harrington, interview with the author, New York, 2005. 41. David Shichor, “Three Strikes as a Public Policy: The Convergence of the New Penology and McDonaldization of Punishment,” Crime-and-Delinquency 43 (October 1997): 470–492. 42. The theoretical underpinnings for this project can be found in David Ellwood, Poor Support: Poverty and the American Family (New York: Basic Books, 1988). For a more detailed picture of this era, see Ellwood’s “Welfare Reform As I Knew It: When Bad Things Happen to Good Policies,” American Prospect 7, no. 26 (May 1, 1997). 43. “The Era of Big Government Is Over,” CNN transcript of President Clinton’s radio address, January 27, 1996. Available at http://www.cnn.com/US/9601/budget/ 01-27/clinton_radio/. 44. Lynn Sweet, “Clinton Backs Sweeping Welfare Plan; Bill Ends Federal Guarantee of Benefits,” Chicago Sun-Times, August 1, 1996, 1. 45. David E. Sanger, “The Last Liberal (Almost) Leaves Town; Labor Secretary Reich Offers ‘a Last Word’ on U.S. Social Policy,” New York Times, January 9, 1997. 46. Lynette Clementon, “More Americans in Poverty in 2002, Census Study Says; Household Income Falls, Lingering Effects of Recession Hit Hardest at Midwest and Nonwhites, Data Show,” New York Times, September 27, 2003, A1. See also Robert Pear, “Big Increase Seen in People Lacking Health Insurance, Largest Rise in a Decade; Higher Costs and a Decline in Workplace Coverage Are at Fault, Census Finds,” New York Times, September 30, 2003, A1. 47. Harvey Brenner et al., “Politics, Policy, and Urban Health.” Paper presented at the Second International Conference on Urban Health, New York City, October 17, 2003. 48. Jeanne Bergman, interview by author, New York, 2006.

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49. Shepard, White Nights and Ascending Shadows. 50. Project Inform. “The Coming Sunset on AIDS Funding Programs,” PI Perspective, no. 22, July 1997. Available at www.projectinform.org/cgi-bin/print_hit_bold .pl/pub/22/fullissue.html (accessed October 12, 2003). 51. Ibid. 52. Jeanne Bergman, interview by author, New York, 2006. 53. Theda Skocpol, Boomerang: Health Care Reform and the Turn Against Government (New York: W. W. Norton, 1995). For more on the expanding federal deficit and dwindling social services, see Benjamin Shepard, “AIDS Activism and ‘Reagan’s Revenge,’” Radical Society 29, no. 3 (2002): 26–29. 54. M. Scott Mallinger, “About Anal Sex, Barebacking: Slogans Aren’t Enough,” Badpuppy Gay Today, April 6, 1998. 55. Eric Rofes, Dry Bones Breathe: Gay Men Creating Post-AIDS Identities and Subcultures (Binghamton, NY: Harrington Park Press, 1998), 3–73. 56. Benjamin Shepard, “The Queer/Gay Assimilationist Split,” Monthly Review 53, no. 1 (May 2001). 57. Allison Reddick, “Dangerous Practices: Ideological Use of the ‘Second Wave,’” in Policing Public Sex: Queer Politics and the Future of AIDS Activism, ed. Dangerous Bedfellows (Boston: South End Press, 1996). 58. Kramer, quoted in David W. Dunlap, “In AIDS Age, Love Can Add Risk,” New York Times, July 27, 1996, 9. 59. Reported in “LGNY Review ’97,” LGNY, January 19, 1998, 16–17. 60. Richard Goldstein, “The Crackdown on Cruising: Just When You Thought It Was Safe to Be Gay, Police Harassment Is on the Rise,” Village Voice, July 1, 1997, 36–38. 61. Andrew Sullivan, “When AIDS Ends,” New York Times Magazine, November 10, 1996, 55, 60. 62. Rotello quoted in Dunlap, “In AIDS Age,” New York Times. 63. “In the Company of Men: A Roundtable,” Out Magazine, October 1997. 64. Trattner, From Poor Law to Welfare State, 56–57. 65. Rofes, Dry Bones Breathe. 66. Cascelles W. Black, “AIDS and Secrets,” in Secrets in Families and Family Therapy, ed. Even Imber-Black, 358–359 (London: W. W. Norton, 1993). 67. For a more careful review of the issue of race and HIV policy, see Cathy J. Cohen, The Boundaries of Blackness: AIDS and the Breakdown of Black Politics (Chicago: University of Chicago Press, 1999). 68. Osborne Duncan, “Down Low’s Media Herd Appeal,” Gay City News (2003), 23, 29; Linda Villarosa, “Speaking Out to Make AIDS an Issue of Color,” New York Times, December 19, 2000, F7; Leroy Whitfield, “Black Plague: Whites Gain Some Reprieve from HIV, but African Americans Are Dying Faster Than Ever. Here’s Why,” Positively Aware 8, no. 5 (September/October 1997). 69. James Barron, “One Man HIV Epidemic,” New York Times, November 2, 1997. Available at http://query.nytimes.com/gst/fullpage.html?sec=health&res= 9E02EFD81430F931A35752C1A961958260. 70. Rivera quoted in ACT UP/New York, “Nushawn Williams Telecasts,” 1998. Available at www.actupny.org/alert/Nushawn-TV.html (accessed October 3, 2003). See also Adam Nossiter, “Man Knowingly Exposed 62 Women to AIDS Virus, Health Officials Looking for More Partners,” New York Times, April 19, 1997; Chris Bull, “Compassion Fatigue,” The Advocate, May 27, 1997, 42. 71. ACT UP/New York, “Nushawn Williams Telecasts.” 72. Ibid.

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73. Lynda Richardson, “AIDS Group Urges New York to Start Reporting of HIV; A Consensus Collapses,” New York Times, January 13, 1998, A1. See also Catherine Hanssens, “HIV Reporting May Deter Some from Testing,” New York Times, January 20, 1998, letters to the editor. 74. ACT UP/New York, “Seven Activists Take Over Department of Health Commish Office to Demand Repeal of Partner Notification Legislation,” press release. Information about this action and other demonstrations on the policy is available at www.actupny.org/alert/names.html. See also Benjamin Shepard, “Notes on a SexPanic!” Gaywave, October 1998. 75. Greg Lugliani, “POZ Annual Givers Guide,” POZ, December 1998. Available at www.poz.com/index.cfm?p=article&art_id=1883 (accessed October 2003); Laura Whitehorn, “America’s Most Unwanted,” POZ, August 2000. 76. Gostin quoted in Lugliani, “POZ Annual Givers Guide.” 77. Andrew Polsky, The Rise of the Therapeutic State (Princeton, NJ: Princeton University Press, 1991), 7. 78. Christian Parenti, The Soft Cage: Surveillance in America (New York: Basic Books, 2003), 152–153. 79. Handler and Hasenfeld, The Moral Construction of Poverty, 6. 80. Keith Cylar, Interview with the author, October 7, 2003. 81. NAPWA quoted in Marcelo Ballve, “Brazil, Not U.S., May Lead World’s Fight Against HIV,” Pacific News Service, July 21, 2003. 82. CDC, “Advancing HIV Prevention: New Strategies for a Changing Epidemic— United States, 2003,” Morbidity and Mortality Weekly Report, April 18, 2003, 331. 83. CDC, “Partner Counseling and Referral Services Program Compliance Materials,” New York City Department of Health, in the possession of the author. 84. Parenti, The Soft Cage, 162. 85. Morgan, Images of Organization, 406, and Parenti, The Soft Cage, 163. 86. Michel Foucault, The History of Sexuality: An Introduction, vol. 1 (New York: Vintage, 1978). 87. For an overview of the debates between those who called for communitybased prevention activism and those who called for state-based approaches, see Jim Eigo, “The City as Body Politic/The Body as City Unto Itself,” in From ACT UP to the WTO: Urban Protest and Community-Building in the Era of Globalization, ed. Benjamin Shepard and Ron Hayduk (New York: Verso Press, 2002). See also Dangerous Bedfellows, Policing Public Sex (Boston: South End Press, 1996). 88. “PEMS Won’t Give Us the Answers We Need,” Community HIV/AIDS Mobilization press release, December 20, 2005. Available at http://www.champnetwork.org/ media/CHAMP-Press-Release-Dec-19.pdf. 89. Nicholas Kristof, “Bush vs. Women,” New York Times, August 16, 2002. 90. Chris Collins et al. “Abstinence Only vs. Comprehensive Sex Education: What Are the Arguments? What Is the Evidence?” Policy Monograph Series. Progressive Health Partners, AIDS Policy Research Center and Center for AIDS Prevention Studies, AIDS Research Institute, University of California, San Francisco, March 2002. Available at http://ari.ucsf.edu/pdf/abstinence.pdf. 91. In August 2003, Representative Henry Waxman (D-CA) produced a report detailing the ways politics subverts basic scientific evidence in government reports and policy to support the ideology of the Bush administration. Politics and Science in the Bush Administration, US House of Representatives, Committee on Government Reform—Minority Staff, Special Investigations Division. Available at www.house .gov/reform/min/politicsandscience/pdfs/pdf_politics_and_science_rep.pdf. See also Ted Agres, “Science, Policy, and Partisan Politics; Congressional Report Fuels Debate

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over Science and Decision Making,” The Scientist, August 13, 2003. Available at www .biomedcentral.com/news/20030813/04. 92. Erica Goode, “Certain Words Can Trip Up AIDS Grants, Scientists Say,” New York Times, April 18, 2003, A18; Mark Sherman, “NIH Questions Researchers About Grants,” Associated Press, October 28, 2003. 93. Duncan Osborne, “Abstinence-Only Supported over All Others; Sex Education Under Bush Excludes Contraception, GLBT Issues,” Gay City News 1, no. 19, October 4, 2003. Available at www.gaycitynews.com/gcn19/abstinence.html. 94. Statement from UFPJ Press Room. Available at http://www.unitedforpeace .org/article.php?list=type&type=15&offset=20 (accessed November 1, 2006). Noted political scientist Frances Fox Piven echoes these sentiments in The War at Home: The Domestic Costs of Bush’s Militarism (New York: New Press, 2004). 95. Scully quoted in “Bush’s Medicare Plan Seeks to Move Seniors into Private Plans, Doesn’t Decrease Prescription Drug Costs,” Daily Mis-lead, October 29, 2003. Available at www.misleader.com/daily_mislead/Read.asp?fn=df10292003.html. 96. Robin Toner, “Medicare: Battleground for a Bigger Struggle,” New York Times, July 20, 2003, sec. 4. Michael Kink, “Medicare Conferees Consider Sneak Attack on Medicaid—New York Impact Could be Huge,” Housing Works: New York State AIDS Issues Update, October 28, 2003; also see “Proposed Medicare Drug Bill Will Slash Drug Coverage for 50,000 Americans Living with AIDS,” November 19, 2003, both available at http://www.hwadvocacy.com/update/. 97. David Brown, “FDA Approves First in Class of AIDS Drugs, ‘Fusion Inhibitor’ Will Help People Whose Bodies Resist Current Medications,” Washington Post, March 14, 2003, A02. 98. Christine Lubinski, Executive Director, HIV Medicine Association, Access Project, Letter to Congress, “Medicare Is an AIDS Issue,” September 24, 2003. 99. Ibid. 100. Ibid. 101. Committee on Public Financing and Delivery of HIV Care, Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White, Board on Health Promotion and Disease Prevention, Institute of Medicine (Washington, DC: National Academies Press, 2004). 102. Crenson and Ginsberg, Downsizing Democracy, 5. 103. Ibid., 202. 104. Ibid., 194. 105. Michael Kink, “Mayor Michael Bloomberg Stuns AIDS Summit with LongAwaited Initial AIDS Policy Speech, Delivers a Wildly Mixed Bag of Proposals: Threatens to Kill Local Law 49, Push PWAs into Workfare,” Housing Works: New York State AIDS Issues Update, March 17, 2003. Available at http://www.hw advocacy.com/update/. Duncan Osborne, “Dissent Mars Bloomberg AIDS Reform Launch,” Gay City News, March 21, 2003. 106. Frank Lombardi, “AIDS Rally Jams Doors to City Hall,” New York Daily News, May 15, 2003, 10; Margaret Ramirez, “Arrests in AIDS Rally, 30 Charged As Activists Decry Proposed Budget Cuts,” New York Newsday, May 15, 2003, A17. 107. Kaiser Family Foundation. Available at http://www.kff.org/medicaid/index .cfm (accessed November 20, 2006). 108. “The United States, a Leader in Efforts Against Global AIDS Epidemic, Is Failing to Address the Disease at Home, Says New Report on Eve of UN Global AIDS Summit; Experts, Including Former Surgeon General, Release First Comprehensive Analysis of U.S. Response to Domestic HIV/AIDS Epidemic,” Open Society Institute

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press release, May 23, 2006. Available at http://www.soros.org/initiatives/health/focus/ phw/news/usreport_20060523. 109. Ibid. 110. Ibid. 111. Lou Chibbaro Jr., “100 Arrested in AIDS protest at US Capital,” New York Blade News, May 28, 2004, 15.

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PART 2 INTERNATIONAL POLITICS

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10 The UN and the Fight Against HIV/AIDS Amy S. Patterson

Global markets, ease of communication, and rapid transportation make states more interdependent today than ever before in history. Because interdependence increases the potential that issues in one state will affect other states, there is greater need for cooperation to address global problems.1 One such issue is HIV/AIDS, which by 2005 had infected approximately 38 million people.2 The time between HIV infection and the onset of AIDS has complicated HIV prevention programs and caused policymakers to underappreciate the long-term impact of AIDS on socioeconomic development and governance.3 Since the first AIDS cases emerged in 1981, there has been a slow process of regime formation that reflects the actions of international organizations, weak and strong states, NGOs, and activists. Stephen Krasner defined a regime as “implicit or explicit principles, norms, and decision-making procedures” that facilitate cooperation among actors.4 By 2006, the AIDS regime had principles for fighting the disease, institutions through which to facilitate cooperation, and expanded (though not adequate) resources to achieve its goals. This does not mean that all states completely adhered to regime norms or that there was full agreement about how to achieve goals. It also did not mean that cooperation was completely successful, as exemplified by the fact that in 2006, approximately 8,000 people worldwide died of AIDS daily.5 Yet even in arguably the most successful international regime of the neoliberal global economy that developed after World War II, cooperation has not been absolute and not all goals (particularly the goal of free trade) have been met.6 This chapter argues that the UN has played a crucial role in the process of forming the AIDS regime. The chapter first outlines the AIDS regime as it exists in 2006. Next, it argues that despite some early successes in fighting AIDS, competition among UN agencies and ambivalence among both weak and strong states stalled regime formation during the first fifteen years of the pandemic. The chapter then maintains that since 2000, the UN has helped 203

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strengthen the AIDS regime by developing innovative programs, acting as a knowledge broker, and providing a space for state and nonstate actors to foster cooperation. The final section questions what the AIDS regime means for the UN as an institution and for a larger commitment to global health. It also questions how power differences between weak and strong states may shape the regime in the future.

The AIDS Regime Regimes are not merely temporary arrangements that change with every shift in state interests; they are also more than formal treaties or international organizations.7 Regimes create patterns of expectations and norms for behavior in particular issue areas. Though not essential, international organizations may facilitate this cooperation, as the International Monetary Fund (IMF) and World Bank have done with the neoliberal global economy. Regimes can be weak or strong; in the former, players inconsistently follow the rules, and over time they may even abandon the regime. In the latter, states tend to adhere to the principles and agreements. The AIDS regime illustrates that regime strength can vacillate over time. Since the emergence of AIDS, cooperation has ebbed and flowed. Although there is debate about why regimes form, two prevailing explanations apply to the AIDS regime. First, powerful states (e.g., the United States after World War II) encourage regime formation in order to meet their foreign policy goals.8 This was true of early efforts toward cooperation on AIDS and has been true of renewed attention since 2000. Second, knowledge producers such as scientists, global civil servants, and activists have been crucial in pushing states toward greater cooperation on the complex scientific issues that have emerged with globalization.9 As of 2006, the AIDS regime had several elements. It emphasized a multisectoral approach to fighting the disease; it was rooted in the belief that prevention, treatment, support, and care are interrelated, with each an essential part of the AIDS struggle; it recognized that fighting AIDS requires protecting human rights, addressing gender inequalities, providing access to medicines, and ending discrimination against people living with HIV/AIDS. We must recognize, of course, that these norms have not been fully implemented: women are 60 percent of HIV-positive Africans; only 17 percent of Africans needing ARV treatment received it in 2005; not all countries have strong, enforceable laws to protect people living with HIV/AIDS.10 Despite these obstacles (only some of which state cooperation can directly address), the regime has new bilateral and multilateral donor programs, such as the US President’s Emergency Plan for AIDS Relief (PEPFAR) and the World Bank’s Multi-Country AIDS Program (MAP).11 New institutions such as UNAIDS and the GFATM have developed to fund and coordinate AIDS efforts. Finally,

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resources have followed: in 1996, global spending to fight AIDS was approximately $300 million; by 2005, it was $8.3 billion.12 Of this amount, more than one-third came from highly affected countries, most of which are in subSaharan Africa.13 Despite these advancements in cooperation, the AIDS regime is tenuous, because it relies on the concern and resources of powerful states that, despite their heightened interest since 2000, have the potential to curtail future cooperation.

The Nascent AIDS Regime: Scientific Efforts, State Ambivalence, and UN Tensions International actions to address HIV/AIDS between 1981 and 1987 were somewhat limited. Though the first International AIDS Conference was held in 1985, it was organized by the US Centers for Disease Control and Prevention, not the UN. In the United States, scientists, public health officials, and individuals within the gay community had begun to challenge the US government to more actively address HIV/AIDS and to provide increased funding for AIDS research. This activism, however, did not spill over to the international community until the late 1980s. Several factors contributed to the international community’s slow response to HIV/AIDS: limited scientific knowledge about the disease, lack of political commitment among both strong and weak states, and an attitude among global public health officials that since the eradication of smallpox, infectious diseases were no longer a threat.14 Elements of cooperation slowly emerged in 1986. Institutionally, the WHO, a UN agency developed in 1948, formed the Global Program on AIDS (GPA). Directed by the dynamic American Jonathan Mann, the GPA grew between 1987 and 1990. The GPA provided a foundation of scientific knowledge on AIDS that was necessary for advancing global cooperation. It encouraged the development of biomedical standards for diagnosing AIDS cases, started an epidemiological base to improve information on infection and mortality, and conducted surveillance studies nationally and globally. The GPA helped countries to develop national AIDS plans and to organize national AIDS councils, both of which sought to control the spread of HIV. During this period AIDS activist groups such as ACT UP, NAPWA, and the Gay Men’s Health Crisis developed in the West.15 The GPA sought to incorporate these groups into its decisionmaking. Mann insightfully realized that AIDS organizations had unique experiences in developing programs for those infected with the disease; their leaders and members also understood the daily complexities of living with AIDS. By the early 1990s, many such organizations had developed sophisticated advocacy techniques, coupling dramatic direct action with the latest information to bolster their arguments. These groups had experienced personnel who had lobbied successfully for national

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policies in developed countries. Under the aegis of the GPA, networks developed such as the International Council of AIDS Service Organizations, which sought to link associations that were providing care and support for people living with HIV/AIDS.16 NGO linkages further benefited the GPA by legitimating the program to donors and WHO staff.17 Despite these advancements, the AIDS regime remained weak. It lacked clarity in norms: on the one hand, Western and WHO policymakers searched for biomedical and technical solutions to AIDS; on the other hand, the GPA (through Mann’s dynamic speeches) asserted that human rights, empowerment, and fighting AIDS were interrelated.18 This tension over a technical or a political approach was evident in 1987: when the World Health Assembly tried to pass a resolution condemning workplace and immigration requirements that discriminated against HIV-positive individuals, the United States pressured delegates to tone down the language. This tension was also apparent as some countries, such as the United States, emphasized scientific solutions through vaccine development, whereas others, such as the United Kingdom and Uganda, made political decisions to increase AIDS prevention messages to high-risk groups and to openly discuss AIDS.19 The regime also was weak because of haphazard commitment among states. US political leadership lagged, with President Ronald Reagan making his first and only speech on AIDS in 1987. Even though the United States contributed the most money to the GPA, its contributions decreased greatly by the early 1990s. But weak states also were ambivalent: most African governments (except Uganda and Senegal) tended to ignore or deny AIDS.20 Thailand was proactive in prevention efforts, particularly among sex workers, but its actions were exceptional in Asia. Divisions within the WHO over the organization’s role in addressing HIV/AIDS further hampered cooperation. Although GPA civil servants proactively developed international AIDS policies, many WHO officials feared the funding implications of working on AIDS, a disease associated with societal taboos such as drug use and sexual promiscuity. The WHO had always searched for technical solutions to health problems, as exemplified in the successful smallpox eradication program, and many WHO officials were leery of getting embroiled in the social and cultural issues that must be addressed to combat AIDS. Moreover, it became increasingly obvious that AIDS was not like other infectious diseases; because it flourished in and contributed to conditions of poverty, AIDS required more than biomedical solutions.21 The divisions in the WHO were manifested in funding and organizational structure. Mann reported directly to the WHO director, but most of the GPA budget came from direct country donations, not WHO budgetary allocations. In 1989 the GPA received $200,000 from the WHO but more than $90 million in bilateral funding from the United States.22 By 1990, personality differences between WHO director Hiroshi Nakajima and Mann exacerbated these funding

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and programmatic tensions. By the mid-1990s, the number of WHO experts working on AIDS plummeted to four from more than 200.23 The first fifteen years of the disease demonstrate the overall weakness of the AIDS regime. Even though the GPA and national AIDS councils developed, they lacked clear norms and were underfunded, particularly by the early 1990s. Experts continued to grapple with the science of AIDS, and activists, who were predominately Western, had yet to turn their efforts to the global pandemic. Few states had committed to AIDS, with the global hegemon becoming less interested in the early 1990s, when fear of a US heterosexual epidemic declined.24 After the cold war, the United States focused more attention on trade and democratization in its foreign policy. In response, donor funding for global AIDS efforts (and more broadly, global health) stagnated.25 The AIDS regime had tentative beginnings, but it would be another decade before powerful states renewed their interests in AIDS.

New UN Institutions, UN Space for Innovation, and the Convergence of State Interests To rejuvenate political commitment and coordinate global AIDS efforts, the UN created UNAIDS in 1996. UNAIDS differed from the GPA in two major ways. First, UNAIDS coordinates the HIV/AIDS programs of other UN bodies, instead of working within the existing UN hierarchy. This structural innovation gives UNAIDS the needed flexibility to address the disease and its impact, and it prevents duplication of UN efforts.26 As of 2006, UNAIDS worked with the UN Children’s Fund (UNICEF), the UN Development Program (UNDP), the UN Fund for Population Activities (UNFPA), the UN Educational, Scientific, and Cultural Organization (UNESCO), the WHO, the World Bank, the UN Office on Drugs and Crime (UNODC), the World Food Program (WFP), the Office of the United Nations High Commissioner for Refugees (UNHCR), and the International Labor Organization (ILO). With a budget of $95 million in 2003 and a staff of approximately 140 professionals, the relatively small size of UNAIDS necessitates that it work closely with other agencies.27 Second, the mission of UNAIDS is not simply to control AIDS through technical monitoring, biomedical solutions, and behavior-focused prevention programs. UNAIDS does collect surveillance data, and it has compiled “best practices” of HIV prevention.28 The mission of UNAIDS reflects a broader framework, however, in which the disease is linked to concerns over human rights, underdevelopment, and gender empowerment. A response to HIV/AIDS must include an understanding of the impact on societies and the larger socioeconomic and cultural variables that make individuals vulnerable to HIV infection.29 As such, UNAIDS has five areas of focus: leadership and

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advocacy, strategic information and technical support, monitoring and evaluation, civil society engagement, and mobilization of resources.30 As its goals of advocacy and civil society engagement demonstrate, UNAIDS is more political than the GPA. UNAIDS advocacy was exemplified at the 2001 UN General Assembly Special Session (UNGASS) on HIV/AIDS, as UNAIDS officials provided needed information to country delegations and built political support for the final Declaration of Commitment on HIV/ AIDS.31 In terms of civil society engagement, UNAIDS has sought to promote the involvement and empowerment of people living with HIV/AIDS through its Greater Involvement of People with AIDS (GIPA) initiative. First developed in 1983 at the second annual AIDS Forum in Denver, Colorado, by a group of people living with HIV/AIDS, GIPA seeks to move beyond tokenism to thoroughly incorporate people living with the disease into policymaking. GIPA recognizes the autonomy of people living with HIV/AIDS and, through empowerment, further seeks to address the stigma that accompanies AIDS.32 Although the power of GIPA in many countries has been limited, its overarching ideals are manifested in the demand of UNAIDS, and increasingly of bilateral donors, that organizations representing people living with HIV/AIDS sit on national and international boards making decisions for AIDS policies and funding. For example, as of early 2006, three of the twenty members of the governing board of the GFATM were from AIDS NGOs.33 Although this is minimal representation, it is a step toward implementing GIPA. When it was formed, UNAIDS lacked funding, staff, and support, particularly from the United States and the United Kingdom. To increase its legitimacy, UNAIDS created a solid base of scientific studies about HIV prevalence and successful AIDS programs. Within four years, this knowledge base provided a foundation for renewed global interest in HIV/AIDS.34 Between 2000 and 2005, several high-level global AIDS initiatives emerged. In January 2000, while the United States held the presidency of the Security Council, the council debated the AIDS pandemic, the first time a health issue had been discussed as a security threat. In that same year, the World Bank began the MAP program, which provides loans to affected countries to fight the disease.35 In June 2001, UNGASS produced the Declaration of Commitment on HIV/AIDS that outlined goals for reducing HIV infections and treating people living with HIV/AIDS. All 189 UN member states signed the declaration without reservation, signaling strong support for international action on HIV/AIDS. In early 2003, US president George W. Bush proposed PEPFAR, which will provide $15 billion over five years for HIV/AIDS programs; most money goes to fifteen countries with high HIV prevalence levels.36 Since PEPFAR’s first appropriations in fiscal year 2004, Congress has increased spending for PEPFAR annually, with $3.3 billion allocated for fiscal year 2006.37 In 2003, the WHO announced its “3 by 5” initiative, which aimed to

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treat 3 million HIV-positive individuals with ARVs by 2005 (a goal that was not met). In 2003, the GFATM also began its first round of grants. What is striking about this list of AIDS efforts is that they all occurred after 2000. Two factors drive the strengthening of the AIDS regime in the twenty-first century. First, powerful countries, particularly the United States, have increasingly viewed fighting AIDS to be in their economic and security interests. The loss of the most productive members of highly affected societies can have a negative impact on education, foreign investment, business profits, and economic development. For wealthy countries, this potentially means years of lost work on development efforts (for Africa) or the erosion of potential trading partners and investment arenas (for India and China). Western policymakers also have stressed the potential linkage between AIDS, poverty, and terrorism in a post–September 11 world.38 Even though it is difficult to empirically prove these long-term security linkages, UNAIDS director Peter Piot, UN secretary general Kofi Annan, and other UN staff have used this framework to motivate powerful states. Piot described this strategy: “I asked myself what political leaders really care about. . . . The truth is, it’s not health. It’s economics and security. Health is what they talk about if there’s money left at the end of the day. I realized I needed to lift our cause out of that arena.”39 A second driving factor in the increased global cooperation on AIDS is the work of activists, development NGOs, religious leaders, public health officials, and AIDS experts. These networks of global civil society have conducted scientific studies on AIDS, mobilized constituents in wealthy countries to support AIDS policies, educated policymakers about the long-term detrimental impact of the disease, and provided new paradigms for understanding the AIDS fight, particularly on the relationship between treatment and prevention. For example, since 2001, two prominent Washington, DC, security think tanks—the International Crisis Group and the Center for Strategic and International Studies—have analyzed the link between security and AIDS.40 Médicins sans Frontières, Action Aid, and TAC in South Africa have illustrated the long-term economic costs of not treating HIV-positive workers. In the United States, Debt, AIDS, Trade, and Africa (DATA) and faith-based development organizations such as World Vision and Samaritan’s Purse have educated and mobilized one core constituency of the Bush administration— evangelical Christians—to pressure the president to address AIDS.41 The broader mission of UNAIDS and its more flexible structure have enabled the UN to play a crucial role in strengthening the AIDS regime since 2000. The UN is not the only actor involved, but it has provided important scientific information on AIDS, a forum for developing new programs (particularly for treatment), and an arena in which state and nonstate actors can debate policy solutions. In the rest of this chapter, I will examine the UN’s role in three specific elements of the AIDS regime: the 2001 UNGASS, the effort to provide ARV treatment in poor countries, and the GFATM.

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UNGASS and the Declaration of Commitment on HIV/AIDS The Declaration of Commitment that was signed at UNGASS outlined what have become the norms of the AIDS regime. It recognized that AIDS is closely tied to human rights, poverty, gender empowerment, and political leadership.42 It argued that “respecting, protecting and fulfilling the human rights of all individuals” is an essential part of any response to HIV/AIDS.43 Because of the advocacy of such groups as Health Global Access Project (Health GAP), ACT UP, TAC, and Médicins sans Frontières, the declaration recognized that access to medication in the context of pandemics such as HIV/AIDS is “one of the fundamental elements to . . . achieve the highest standard of physical and mental health.”44 The document sought to move beyond rhetoric, though, by setting specific goals. By 2003, country leaders were asked to develop multisectoral national strategies and finance plans for AIDS and to integrate AIDS programs into development planning.45 Countries were challenged to eliminate all forms of discrimination against people living with HIV/AIDS by 2003 and to improve gender equality by 2005.46 The agreement urged states to increase access to ARV treatment, diagnostics, and medical and palliative care by 2005.47 The declaration set the goal of spending between $7 and $10 billion by 2005 to fight AIDS in low- and middle-income countries.48 The agreement demanded that HIV/AIDS become a greater priority in national budgets, and it called for creation of the GFATM. The declaration provided a blueprint for cooperation. In March 2006, the UN secretary general issued a five-year assessment on progress toward UNGASS goals. Positively, between 2001 and 2005, AIDS funding increased fourfold, and the number of people on ARVs and the number getting tested for HIV increased fivefold. The majority of states had developed national AIDS strategies and high-level AIDS decisionmaking institutions. On the other hand, fewer than 50 percent of young people globally had access to HIV prevention education, high-risk populations such as people who inject drugs continued to receive inadequate HIV information, and programs to care for orphans in highly affected countries were woefully lacking.49 Although states had committed to AIDS through new institutions and wealthy countries had contributed more resources to AIDS, implementation of the AIDS regime continued to face social, cultural, economic, and political challenges. In mid-2006, UN member states met to update the 2001 Declaration of Commitment. Negotiations were incredibly contentious, as the United States teamed up with several Islamic countries to fight inclusion of language that named high-risk groups such as men who have sex with men, sex workers, and intravenous drug users. Unlike the previous declaration, the 2006 document also did not set numerical targets for treatment. On the other hand, the declaration acknowledged the high burden that women face as those infected

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and affected by AIDS, and it asserted that women must be empowered in their sexual and reproductive health. And in contrast to US policy, it acknowledged the importance of harm-reduction efforts related to drug use (i.e., needleexchange programs). It also paid particular attention to the need for pediatric ARVs, an issue sorely lacking in global AIDS efforts.50 Reactions on the 2006 UNGASS were mixed: most country delegates realized that the final document was a compromise; activists, on the other hand, voiced disappointment. Stephen Lewis, UN special envoy on AIDS to Africa, responded that the lack of financial targets was particularly distressing, since highly affected countries are concerned that if donor interest declines, funding will end.51 In contrast to the 2001 UNGASS, negotiations at the 2006 session were more difficult. The Africa bloc was somewhat divided, even though it had developed explicit goals it hoped to reach at the summit. In contrast to Western Europe, the United States worked to exclude financial targets, arguing that if targets were not met, the United States, as the country giving the most resources to the global AIDS fight, could be blamed.52 These disagreements could be viewed as setbacks in the AIDS regime, although by late 2006, it appeared that the 2006 UNGASS had not harmed global cooperation on AIDS. On the other hand, member states and activists may have argued so vehemently because they had a much greater stake in the UNGASS outcome than in 2001. The large increase in resources and the development of new programs since 2001 mean there are consequences to UNGASS. This jockeying over program goals and declaration wording may reflect one of the UN’s successes in fighting AIDS: making the disease a global political issue. Despite this uneven progress, the UNGASS process demonstrates how the UN has helped strengthen the AIDS regime. The UN provided a forum in which weak and strong states and state and nonstate actors could constructively discuss AIDS. The process of convincing the General Assembly to call for the special session, negotiating the draft declaration before UNGASS, and gaining unanimous support for the declaration at UNGASS required country delegates, UNAIDS officials, and NGO representatives to listen to each other and compromise. The process of building consensus on HIV/AIDS policies was probably more important than the end product, since this open dialogue challenged the AIDS stigma and helped policymakers comprehend the complexity of prevention and impact mitigation.53 These benefits were evident in the five years after the 2001 UNGASS, as new bilateral and multilateral efforts to fight AIDS emerged. The UN also was crucial in the UNGASS process because of its specialized knowledge. Experts at UNAIDS guided negotiations, and at the 2006 summit, delegates acknowledged that UN experts and activists had helped to strengthen the draft document.54 UN civil servants, in conjunction with public health experts and AIDS NGOs, acted as knowledge brokers and intermediaries between member states. Finally, by pushing states to examine the complexity of AIDS instead of focusing solely on the disease’s biomedical aspects,

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the UN helped develop a paradigm that reflects the linkages among disease and human rights, politics, and globalization. The Effort to Provide ARV Treatment in Poor Countries Although in 2006 the norm of providing ARV treatment in poor countries was widely accepted, this had not been the case six years earlier, when some public health officials and policymakers said ARVs were too expensive and too difficult to administer in resource-poor countries.55 NGOs and AIDS activists, along with the UN, helped to facilitate this change. After increasing pressure from activists, particularly at the 2000 International AIDS Conference in Durban, the UN sponsored the Accelerating Access Initiative (AAI). The AAI was a partnership between UN agencies on one side—the UNFPA, the WHO, UNICEF, the World Bank, and UNAIDS—and the major ARV producers on the other—Boehringer Ingelheim, Bristol Myers Squibb, GlaxoSmithKline, Merck & Co., and F. Hoffmann–La Roche.56 In 2000, life-extending ARVs cost between $10,000 and $15,000 per year in the West, making them out of reach of most HIV-positive citizens in developing countries. The AAI sought to make ARVs, and other medicines for opportunistic infections, available and affordable. It worked within the constraints of the global free trade regime, particularly the Trade-Related Intellectual Property Rights (TRIPS) Agreement of the World Trade Organization (WTO), which protects the patents of pharmaceutical companies and allows them to set the price of their products. The UN facilitated negotiations between drug producers and country representatives to decrease the price of particular drugs. In return, countries agreed not to import generic drugs (parallel importing) or to produce the drugs themselves by requiring the patent holder to license their product to a domestic manufacturer (compulsory licensing). Both parallel importing and compulsory licensing are limited under the TRIPS agreement, though the 2001 Doha Declaration on TRIPS and Public Health asserts the right to issue compulsory licenses in “public health crises, including those relating to HIV/AIDS, tuberculosis, malaria and other epidemics.”57 Under the AAI, countries developed national plans for dispersing ARVs and monitoring patients. According to a 2002 UNAIDS report, the program sought to decrease the cost of drugs by 80 to 90 percent.58 By 2003, eighteen countries had finalized agreements with drug manufacturers, and twelve were receiving drugs at reduced rates.59 The AAI was a reaction to several events that challenged the drug companies and made them defensive about prices.60 Citing HIV/AIDS as a national health emergency, South Africa had passed the 1997 South African Medicines Act to allow compulsory licensing. TAC had lobbied the South African parliament to pass the legislation, despite the fact that then Deputy Vice President Thabo Mbeki had questioned the safety and efficacy of ARVs.61 In response, forty pharmaceutical companies sued the South African

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government for violations of the TRIPS agreement. AIDS activists pressured the pharmaceutical companies to drop the lawsuit in 2001 and embarrassed the United States for its support of the pharmaceutical industry. After South Africa passed the law, the United States placed the country on its Special 301 watch list, a designation that would allow the US trade representative to place trade sanctions on the country if it did not change its legislation.62 Vice President Al Gore was closely involved in pushing South Africa to revise the Medicines Act, and in the campaign for the 2000 election, the Black Caucus in Congress lobbied Gore to remove South Africa from the special 301 list. Because black voters were crucial to his 2000 campaign, the vice president could not ignore this pressure. Additionally, members of ACT UP, Health GAP, and AIDS Drugs for Africa appeared at Gore campaign events to chastise and embarrass the vice president.63 At roughly the same time as passage of the Medicines Act, India and Brazil began to produce generic ARVs. Brazil’s production of the drugs was part of a comprehensive strategy to provide free testing, counseling, and treatment for people living with HIV/AIDS; treatment and prevention efforts in the country complement each other.64 In India, pharmaceutical companies such as Cipla developed generic ARVs for export. The rise of generic producers, the success of the Brazil program, and the activist pressure led the pharmaceutical industry to work with the UN to develop the AAI program.65 To be clear, the AAI was a piecemeal program. It did not challenge the overall inequality in health-care access between rich and poor countries. It sought to provide some access to drugs while also appeasing the Western producers and countries that benefit from the TRIPS agreement.66 Because the required negotiations were for individual drugs, not across-the-board price cuts, negotiations necessitated time and personnel, two things many developing nations could not easily afford. Delays meant that in 2003 only 1 to 2 percent of citizens needing ARVs participated in the AAI.67 Furthermore, the negotiated prices were not as low as the prices for generics. In 2003, the negotiated price of zidovudine was $1.60 per daily dose, versus $0.53 for the generic; the least expensive brand-name combination therapy was approximately $675 per patient per year, twice the generic price.68 By 2006, other national-level and donor-funded treatment programs had eclipsed the AAI. Despite its limitations, the program was a first step in the widespread provision of ARVs in the developing world. Its legacy led to the WTO agreement in 2003 that allowed generic-producing countries to export ARVs to countries facing health emergencies if they lacked the manufacturing capacity to produce the drugs. Since 2002, the WTO also has interpreted the Doha agreement to allow compulsory licensing in poor countries,69 and by 2006, several African states had begun producing their own ARVs.70 The AAI experience propelled the formation of the Clinton Foundation HIV/AIDS Initiative, which since 2003 has used economies of scale to negotiate lower

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prices for large quantities of ARVs for poor countries. The foundation’s purchasing power has helped to drive down the price of both brand-name and generic drugs and diagnostics.71 For example, the Hetero Company offered a first-line combination therapy for $168 per patient per year in January 2005.72 Along with pressure from NGOs, the AAI heightened the expectation that multinational corporations would provide ARVs to their workers in poor countries, and by 2006, in African countries with high HIV prevalence levels, more than 70 percent of companies surveyed by the Global Business Coalition on HIV/AIDS said they subsidized treatment costs for their workers. These included Anglo-American Mining Company, Debswana Diamond Company, and Coca-Cola.73 In a broader sense, the AAI validated the inclusion of treatment in the AIDS fight. It reflected a broad understanding that without furthering the lives of HIV-positive citizens, worker productivity would decline, children would lack parental care and educational opportunities, and gains in economic development would erode. The availability of treatment has become more than simply an issue of an individual’s access to drugs; it has become a question of what leaving millions of people living with HIV/AIDS untreated will mean for society’s well-being.74 The broader experience with the AAI showed how the UN could negotiate between public and private actors, how it could provide a space in which nonstate actors (such as the Clinton Foundation) could create innovative programs, and how the UN could work with AIDS activists to meet larger public health objectives. By 2001, UNGASS had solidified the norm of treatment for people living with HIV/AIDS in the Declaration of Commitment and had set the goal of providing treatment to 3 million HIV-positive people by 2005. In December 2003, the WHO outlined plans to reach this objective, primarily by training 100,000 health-care workers at an anticipated cost of $5.5 billion.75 Although the WHO did not achieve the “3 by 5” goals, many activists and scholars agreed that the attempt was not a wasted effort. The program helped increase the number of people on ARVs from 400,000 in 2003 to 1.3 million in 2005. More important, the WHO learned about the “positive impact of targets in creating and sustaining momentum.”76 Instead of languishing in defeat, the WHO committed to give 6.5 million people living with HIV/AIDS treatment by 2010. The WHO echoed the message of many AIDS experts and activists: Instead of looking for excuses not to act, it is essential to design and support programs that build on the determination of poor countries.77 Another step in strengthening the AIDS regime’s commitment to treatment is PEPFAR. PEPFAR’s critics argue it exemplifies how powerful states can derail global cooperation.78 Yet, according to PEPFAR’s authorizing legislation (PL 108-25), 55 percent of the program’s funding must go for treatment; the remaining 45 percent is earmarked as follows: 20 percent for prevention, 15 percent for care for people living with HIV/AIDS, and 10 percent for orphans and vulnerable children. The high level of spending on treatment

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reflects the high cost of brand-name drugs in 2003, but it also recognizes that to meet PEPFAR’s goal of putting 2 million people on ARVs by 2008, a serious financial commitment is needed. This high cost reflects not only the price of ARVs but also (what is more crucial in 2006) the cost of laboratory equipment, diagnostic tests, and health-care personnel.79 PEPFAR first appeared to enforce the TRIPS agreement, since it requires that the US FDA approve any ARVs the program uses. In 2003, all brandname drugs had FDA approval; most generics did not. However, in 2004 the FDA developed an expedited review process for generic ARVs, an acknowledgment that to meet its overall treatment goals, PEPFAR needed to use generics. By mid-2006, over a dozen generics had been approved, and the majority of PEPFAR treatment money in some countries went for generics.80 When PEPFAR focus-country officials have insisted on using generics, US officials have agreed.81 The UN helped foster these treatment efforts through innovative, though limited, programs such as the AAI and the “3 by 5” initiative; through its intermediary position among states, NGOs, and pharmaceutical companies; and through goals set in the Declaration of Commitment. These tentative UN successes, though, do not mean that the treatment objective has been met. As of early 2006, only 5 percent of HIV-positive children in developing countries received treatment, and only 10 percent of HIV-positive pregnant women got the drugs needed to prevent mother-to-child transmission.82 Despite these large remaining hurdles, the norm of treatment access and the programs to facilitate that access have become a crucial component of the AIDS regime since 2000. The Global Fund to Fight AIDS, Tuberculosis, and Malaria The GFATM seeks to institutionalize the norms of the AIDS regime. First, it recognizes that resources are essential to fight AIDS, and it provides an independent organization through which those funds can be collected and allocated. As of early 2006, individuals, corporations, foundations, and countries had pledged $8.9 billion since mid-2001 to the fund; of this amount, the GFATM had received approximately $5 billion.83 In its five rounds of grants between 2003 and 2005, the GFATM had approved roughly $5.4 billion for projects. More than half of this amount was for AIDS programs, and 61 percent went to Africa.84 Second, GFATM grants reinforce the norm of ARV treatment. For example, in 2005, the GFATM reported that its financing had helped put approximately 380,000 individuals on ARVs.85 The GFATM strives to encourage consensus building and dialogue between civil society and government representatives in applicant countries. To apply to the GFATM, a country must set up a CCM, which is composed of representatives from government, NGOs, multilateral and bilateral donor

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agencies, and the private sector. The CCM is designed to be a public-private partnership, though most CCMs are chaired by a senior government official. The CCM is responsible for writing GFATM proposals and for distributing grants. Although NGOs are eligible to submit proposals directly to the GFATM, “the proposal must demonstrate clearly why it could not be considered under the CCM process at the country level.”86 Although the GFATM has sought to encourage the implementation of GIPA in the composition of CCMs, civil society representation on CCMs is uneven across countries.87 As a multilateral organization dependent on wealthy states for its resources, the GFATM faces challenges. Its clientele lacks power in the international system; thus, it must rely on the generosity of predominantly industrialized states whose concern over HIV/AIDS and global health can be sporadic. In mid-2005, the GFATM lacked the funds needed to begin the sixth round of grants in early 2006. Although European donors increased pledges in late 2005 to make the sixth round possible, this was not the first time the GFATM had faced a potential funding shortfall. (The same situation had occurred in late 2003.) Even though the GFATM faces resource obstacles, it is telling that since its inception, the major states have not turned their backs on the organization. The GFATM continues funding projects, though it sometimes has to rely on last-minute donations. PEPFAR presents both challenges and opportunities to the GFATM. On the one hand, PEPFAR may draw US resources away from the fund, potentially weakening this institution of the AIDS regime. Even though PEPFAR’s authorizing legislation included a pledge of up to $1 billion to the GFATM, it limits the US contribution to 33 percent of the fund’s total contributions. Although this requirement was intended to make other countries give more to the GFATM, this did not occur for fiscal year 2004, and the GFATM lost some US funding as a result. On the other hand, the GFATM and PEPFAR provide opportunities to fund different aspects of the AIDS fight. Some countries have used GFATM money for ARVs and PEPFAR funds for health-care equipment or personnel. Since PEPFAR focuses on only fifteen countries, the success of the GFATM is essential for the global AIDS fight. US policymakers in both parties recognize this fact, and PEPFAR administrators have sought to increase cooperation with the GFATM in recent years.88 The GFATM illustrates how the UN may call attention to global problems and shape international policymaking in innovative ways. The idea for the GFATM originated with Columbia University economist Jeffrey Sachs and civil servants at the WHO, a fact that demonstrates the importance of private actors and UN agencies as knowledge brokers. It was UN Secretary General Kofi Annan, however, who used his high-profile position to campaign for its creation and to solicit initial donations. For example, he met with President Bush and Secretary of State Colin Powell to discuss the GFATM and to gain a financial pledge of $200 million before UNGASS.89 Through the GFATM,

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the UN also has encouraged new structures and approaches to fight AIDS. Although the GFATM is a multilateral entity, it has a unique decisionmaking process and mandate, with industrialized and developing countries having an equal number of seats on its governing board. In addition, two NGO representatives, one from a developing country and one from a developed country, and two private-sector representatives are included on the board. At least one board member must be a person living with AIDS, tuberculosis, and/or malaria. The World Bank, UNAIDS, and the WHO are nonvoting members.90 The GFATM strives to be apolitical. Its technical review panel judges proposals on their technical merits, not the political situation of the applicant country. This small, independent, technically focused organization contrasts with the World Bank, IMF, and the UN Secretariat, all of which are larger, less efficient, and—in the case of the World Bank and IMF—often driven by US interests. Finally, the GFATM prevents the Declaration of Commitment from resembling most other UN documents that set goals but have no means to reach them. Relying solely on UN agencies to implement the declaration’s objectives could have meant that AIDS policies became hopelessly mired in bureaucratic politics. In contrast, the independent GFATM empowers states and NGOs to meet the UNGASS goals.91 The creation of the GFATM illustrates the awareness that the AIDS fight necessitates new resources and that innovative forms of collaboration are essential to promote global public health.

The Future of the AIDS Regime Fostered by greater awareness of the factors that make individuals vulnerable to HIV infection, states, the UN, and civil society have created new institutions such as UNAIDS and the GFATM, designed new programs, and accepted norms outlined in the Declaration of Commitment. The UN has played a crucial role in regime development, and its programs have given various actors a stake in the HIV/AIDS issue. For example, through CCM participation, business, faith-based, and development organizations have become more integrated into discussions of AIDS. In addition, since GIPA acknowledges the autonomy and rights of people living with HIV/AIDS, it provides a profound model for incorporating individuals with any disease into making health policies. There are two implications of these UN actions for the fight against AIDS. First, through UN efforts, it has become apparent that AIDS is a political issue that requires leadership and state capacity. The realization that health and politics are interrelated is crucial not only for policymaking on HIV/AIDS but also for the development of a larger commitment to public

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health. UNAIDS has worked to politicize AIDS, though activists played an essential role in calling attention to the disease and proposing important solutions. Second, as highlighted in this chapter, there is a need for an international arena in which political leaders can exchange ideas, create innovative institutions, and approach health problems such as AIDS from new angles. The UN provides such a forum. There is some evidence that UN actions on HIV/AIDS now serve as a model for international policy on other health concerns. For example, efforts to combat the 2003 outbreak of severe acute respiratory syndrome (SARS) benefited from the mechanisms of data collection that developed with AIDS. Further, experience with HIV/AIDS caused policymakers to be more aware of the negative economic impact of SARS. The 2003 WHO Framework Convention on Tobacco Control further emulated the more proactive role that the UN (and especially UNAIDS) has played in HIV prevention efforts.92 UN efforts on AIDS also may shape the UN itself. Unlike issues of state security, international trade, or even environmental protection, AIDS may provide a rare opportunity for UN leadership. The complexity of HIV/AIDS, the magnitude of its impact, and the difficulty of controlling disease in an era of globalization heighten the need for a multilateral response. UN leaders are uniquely situated to shape global responses to the pandemic. In a period when the major powers have increasingly questioned the UN’s legitimacy and effectiveness, the institution’s strength may lie not in its role as a collective security body but in its ability to address humanitarian issues such as AIDS. The last twenty-five years of global cooperation raise questions about the role of powerful states such as the United States in the AIDS regime. At times, the United States has vetoed aspects of cooperation, such as when it distanced AIDS from human rights in the 1980s, when it threatened South Africa over the Medicines Act, and when it refused to include financial targets in the 2006 Declaration of Commitment. PEPFAR’s specific policies, such as the requirement that one-third of its HIV prevention funds go for abstinence/monogamy education programs and its requirement that groups receiving its funding sign a statement saying they do not support prostitution, set the United States apart from other bilateral and multilateral donors. These policies reflect the power of US interest groups in foreign policy development and illustrate that states are rarely unitary actors in international relations. These policies also demonstrate that although there is global agreement on the need to fight AIDS, there is not complete consensus on how to do this. Strong and weak states broadly agree on the importance of treatment access, the need to build health-care capacity, the links between AIDS and human rights, and the need for continued resources for AIDS. Since 2000, strong states have viewed fighting AIDS to be in their economic and security interests. Whether this will remain true in the future depends on successes in the AIDS fight, the willingness of wealthy countries to spend the projected

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$22 billion needed by 2008, and the ability of highly affected states to absorb this increase in resources.93 Specifically, the norm of treatment access for the millions of people living with HIV/AIDS who need ARVs will test the AIDS regime. Will strong states continue to finance treatment when patients must move to second- and third-line drugs, for which few generics are available?94 Will the global community be willing to incur the increased cost of providing ARVs to people living with HIV/AIDS who will live longer because of treatment access? Because AIDS will continue into the next generation, the real question for the regime’s future is whether powerful states will not only continue but also increase their resource and program commitments. This is a particularly crucial question, since, without their own generalized AIDS epidemics, strong states have the power to renege on the regime. To sustain the global commitment to AIDS, the UN must continue to politicize the disease, to highlight successes in the AIDS fight, to serve as a knowledge broker, and to design innovative programs. Most crucially, it must persist in showing strong states that it is in their interests to care about AIDS.

Notes 1. Robert Keohane and Joseph Nye, Power and Interdependence (Boston: Little, Brown, 1977). 2. UNAIDS, Report on the Global AIDS Epidemic 2006, 6. Available at http://www.unaids.org/en/HIV-data/2006GlobalReport/default.asp (accessed May 30, 2006). 3. Alex de Waal, “How Will HIV/AIDS Transform African Governance?” African Affairs 102 (2003): 1–23; Tony Barnett and Alan Whiteside, AIDS in the Twenty-First Century: Disease and Globalization (New York: Palgrave Macmillan, 2002), 203–207. 4. Stephen Krasner, “Structural Causes and Regime Consequences: Regimes as Intervening Variables,” International Organization 36, no. 2 (1982): 186. 5. United Nations General Assembly, “Declaration of Commitment on HIV/ AIDS: Five Years Later,” Report of the Secretary-General, March 24, 2006, 4. Available at http://data.unaids.org/pub/Report/2006/20060321_SGReport_GA_A60736_en.pdf. 6. John Ruggie, “International Regimes, Transactions, and Change: Embedded Liberalism in the Postwar Economic Order,” in International Regimes, ed. Stephen Krasner, 195–232 (Ithaca, NY: Cornell University Press, 1983). 7. Oran Young, “Regime Dynamics: The Rise and Fall of International Regimes,” International Organization 36, no. 2 (1982): 277–297. 8. Arthur Stein, “Coordination and Collaboration: Regimes in an Anarchic World,” International Organization 36, no. 2 (1982): 319–320. 9. Ernst Haas, “Why Collaborate? Issue-Linkage and International Regimes,” World Politics 32, no. 3 (1980): 357–405; Marian Miller, The Third World in Global Environmental Politics (Boulder, CO: Lynne Rienner Publishers, 1995), 53–56. 10. United Nations General Assembly, “Declaration of Commitment on HIV/ AIDS,” 7; World Health Organization and United Nations Joint Program on HIV/ AIDS, “Global Access to HIV Therapy Tripled in Past Two Years, but Significant

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Challenges Remain,” press release, 2. Available at http://data.unaids.org/pub/PressRelease/2006/20060328-PR-3by5_en.pdf?preview=true (accessed May 24, 2006). 11. Nana Poku and Alan Whiteside, “25 Years of Living with HIV/AIDS: Challenges and Prospects,” International Affairs 82, no. 2 (2006): 254–255. 12. UNAIDS, Report on the Global AIDS Epidemic 2006, 4. 13. Nana Poku, “HIV/AIDS Financing: A Case for Improving the Quality and Quantity of Aid,” International Affairs 82, no. 2 (2006): 351–353. 14. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin’s Press, 1987). 15. Patricia Siplon, AIDS and the Policy Struggle in the United States (Washington, DC: Georgetown University Press, 2002), 8. 16. Nana Poku, “The Global AIDS Fund: Context and Opportunity,” Third World Quarterly 23, no. 2 (2002): 283–298. 17. Peter Sölderholm, Global Governance of AIDS: Partnerships with Civil Society (Lund, Sweden: Lund University Press, 1997), 94. 18. Poku, “The Global AIDS Fund”; Kurt Dieter Will, “The Global Politics of AIDS: The World Health Organization and the International Regime for AIDS” (PhD diss., University of South Carolina, 1991); Leon Gordenker et al., International Cooperation in Response to AIDS (New York: Pinter Press, 1995), 127. 19. The 1987 Helms amendment, which denied visitors to the United States entry if they were HIV positive, also exemplified the reluctance of the United States to frame AIDS as a human rights issue. Public Broadcasting Corporation, Frontline, “The Age of AIDS,” television documentary, May 30–31, 2006. Bush made the requirements more lenient on December 1, 2006. 20. For example, Kenya’s president Daniel arap Moi stated that the foreign press was conducting a hate campaign against his country when it reported in 1985 that Kenya had twenty AIDS victims. Alfred Fortin, “The Politics of AIDS in Kenya,” Third World Quarterly 9, no. 3 (1987): 906–919; Justin Parkhurst, “The Crisis of AIDS and the Politics of Response: The Case of Uganda,” International Relations 15, no. 6 (2001): 69–87; UNAIDS, “Acting Early to Prevent AIDS: The Case of Senegal,” in UNAIDS Best Practice Collection. Available at http://www. unaids.org/bestpractice/ collection/country/senegal/senegal.html (accessed June 19, 2003). 21. Barnett and Whiteside, AIDS in the Twenty-First Century, 27. Though AIDS was initially perceived to be a disease of wealthy countries, it is now a disease of poverty, with over 90 percent of AIDS cases in poor countries. UNAIDS, Report on the Global AIDS Epidemic 2006. 22. Greg Behrman, The Invisible People: How the U.S. Has Slept Through the Global AIDS Pandemic, the Greatest Humanitarian Catastrophe of Our Time (New York: Free Press, 2004), 48. 23. Public Broadcasting Corporation, Frontline, May 30, 2006. 24. Barton Gellman, “The Belated Global Response to AIDS,” Washington Post, December 26, 2000, A1. 25. Behrman, The Invisible People, 79–140. 26. Barnett and Whiteside, AIDS in the Twenty-First Century, 356. 27. UNAIDS, “What UNAIDS Does.” Available at http://www.unaids.org/about/ what.asp (accessed June 13, 2003). 28. Poku, “The Global AIDS Fund.” 29. Barnett and Whiteside, AIDS in the Twenty-First Century, 160. 30. UNAIDS, “UNAIDS in Action.” Available at http://www.unaids.org/en/Coordination/default.asp (accessed May 26, 2006).

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31. Official at Swedish mission to UN, New York, email correspondence with author, October 1, 2002. 32. Patricia Siplon, “AIDS and Patriarchy: Ideological Obstacles to Effective Policy Making,” in The African State and the AIDS Crisis, ed. Amy S. Patterson (Aldershot, England: Ashgate Publishers, 2005), 28–31. 33. Global Fund to Fight AIDS, Tuberculosis, and Malaria [hereafter Global Fund], “Voting Board Members.” Available at http://www.theglobalfund.org/en/about/ board/members (accessed January 17, 2006). 34. Gellman, “The Belated Global Response to AIDS”; Geoffrey Cowley, “The Life of a Virus Hunter,” Newsweek, May 15, 2006, 63. 35. World Bank, “About the Multi-Country HIV/AIDS Program (MAP).” Available at http://www.worldbank.org/afr/aids/map.htm (accessed August 15, 2005). 36. The twelve PEPFAR focus countries in Africa are Botswana, Côte d’Ivoire, Ethiopia, Kenya, Mozambique, Namibia, Nigeria, Rwanda, South Africa, Tanzania, Uganda, and Zambia. Guyana, Haiti, and Vietnam are the other three, with Vietnam added in 2004. 37. Raymond Copson, “The Global Fund and PEPFAR in U.S. International AIDS Policy: Implications for Africa” (paper presented for the annual meeting of the African Studies Association, Washington, DC, November 17, 2005), 5. 38. On the linkage between health and security, see Laurie Garrett, The Coming Plague: Newly Emerging Diseases in a World Out of Balance (New York: Penguin, 1995); Andrew Price-Smith, Plagues and Politics: Infectious Disease and International Policy (New York: Palgrave Macmillan, 2001), 1; Stefan Elbe, “HIV/AIDS and the Changing Landscape of War in Africa,” International Security 27, no. 2 (2002): 159–177. On US policy perspectives linking AIDS and terrorism, see Amy S. Patterson, “AIDS, Orphans, and the Future of Democracy,” in The Children of Africa Confront AIDS: From Vulnerability to Possibility, ed. Arvind Singhal and W. Stephen Howard, 25–26 (Athens: Ohio University Press, 2003). On the lack of empirical verification for the AIDS-security linkage, see Tony Barnett, “A Long Wave Event. HIV/AIDS, Politics, Governance and ‘Security’: Sundering the Intergenerational Bond?” International Affairs 82, no. 2 (2006): 297. 39. Piot quoted in Cowley, “The Life of a Virus Hunter,” 63. For an example of Piot’s use of the security framework, see Peter Piot, “UNAIDS Head Speaks on AIDS and Global Security.” Available at http://usinfo.state.gov/topical/global/hiv/ 01100301.htm (accessed February 14, 2002). 40. International Crisis Group, “HIV/AIDS as a Security Issue.” Available at http://www.crisis.org/projects/issues/hiv_aids/reports/A400321_19062001.pdf (accessed April 20, 2002). 41. Sheryl Gay Stolberg and Richard Stevenson, “Bush AIDS Plan Surprises Many, but Advisers Call It Long Planned,” New York Times, January 30, 2003, A1; Elisabeth Bumiller, “Evangelicals Sway White House on Human Rights Issues Abroad,” New York Times, October 26, 2003, A1. 42. United Nations General Assembly Special Session on HIV/AIDS, “Declaration of Commitment on HIV/AIDS,” no. 11. Available at http://un.org/ga/aids/coverage/ FinalDeclarationHivAIDS.html (accessed June 1, 2002). 43. Ibid., no. 13. 44. Ibid., no. 15. 45. Ibid., no. 37–43. 46. Ibid., no. 58–61. 47. Ibid., no. 56.

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48. Ibid., no. 80. 49. United Nations General Assembly, “Declaration of Commitment on HIV/ AIDS: Five Years Later,” 4–8. 50. Lawrence Altman and Elisabeth Rosenthal, “U.N. Strengthens Call for a Global Battle Against AIDS,” New York Times, June 3, 2006. Available at http:// www.nytimes.com (accessed June 5, 2006). 51. Shawn McCarthy, “Warning to Increase AIDS Funds Gets Tepid Reception at UN,” Global and Mail, June 2, 2006. 52. David Brown, “U.N. Group Sets Compromise on AIDS Policy,” Washington Post, June 3, 2006, A3. 53. Barnett and Whiteside, AIDS in the Twenty-First Century, 322. 54. Evelyn Leopold, “Nations Resist New Financial Commitments on AIDS,” Reuters UK, June 3, 2006. Available at http://today.reuters.co.uk/news/newsArticle .aspx?type=topNews&storyID=2006-06-03T013525Z_01_N02188832 _RTRUKOC_0_UK-AIDS-UN.xml. 55. Barton Gellman, “An Unequal Calculus of Life and Death,” Washington Post, December 27, 2000, A1. 56. Initially part of the AAI discussions, Pfizer dropped out and developed its own program to donate Diflucan (flucanozole) in countries with high HIV prevalence rates. Abbott Laboratories later joined the initiative. Some of these companies have since merged with others or have changed their names. For example, F. Hoffman-La Roche is now simply Roche. 57. Debora Halbert, “Moralized Discourses: South Africa’s Intellectual Property Fight for Access to AIDS Medication” (paper presented at Ohio University conference on AIDS and the African Child, Athens, OH, April 11, 2002), 24. 58. UNAIDS, “Care, Treatment, and Support for People Living with HIV/AIDS.” Available at http://www.unaids.org/barcelona/presskit/barcelona%20report/chapter6 .html (accessed June 17, 2003). 59. Ibid.; United States Department of State, “Global Issues: Health Care for HIV/AIDS and Other Diseases.” Available at http://usinfo.state.gov/journals/itgic/ 1201/ijge/gj08.htm (accessed June 17, 2003). 60. Gellman, “An Unequal Calculus of Life and Death”; Barton Gellman, “A Turning Point That Left Millions Behind,” Washington Post, December 28, 2000, A1; Bill Brubaker, “The Limits of $100 Million,” Washington Post, December 29, 2000, A1. 61. Patrick Furlong and Karen Ball, “The More Things Change: AIDS and the State in South Africa, 1987–2003,” in The African State and the AIDS Crisis, ed. Amy S. Patterson, 143 (Aldershot, England: Ashgate Publishers, 2005). 62. Caroline Thomas, “Trade Policy and the Politics of Access to Drugs,” Third World Quarterly 23, no. 2 (2002): 251–264. 63. Halbert, “Moralized Discourses.” 64. Tina Rosenberg, “Look at Brazil,” New York Times Magazine, January 28, 2001, 26. 65. Poku, “The Global AIDS Fund.” 66. Of the six company participants, three are American (Merck & Co., Abbott, and Bristol-Myers Squibb), one is British (GlaxoSmithKline), one is Swiss (Roche), and one is German (Boehringer Ingelheim). Mark Heywood, “Drug Access, Patents, and Global Health: ‘Chaffed and Waxed Sufficient,’” Third World Quarterly 23, no. 2 (2002): 217–231. 67. Thomas, “Trade Policy and the Politics of Access to Drugs,” 261.

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68. UNAIDS, “Fact Sheet: Access to HIV Treatment and Care.” Available at http://www.unaids.org/html/pub/publications/fact-sheets03/FS_treatment_care_en_pdf (accessed January 7, 2004); UNAIDS, “Prices of Antiretroviral Medicines in Least Developed Countries and Generic Versions,” in Sources and Prices of Selected Drugs and Diagnostics for People Living with HIV/AIDS. Available at http://www.unaids.org/ publications/documents/health/access/Sources2002/en.pdf (accessed June 21, 2003). 69. Elizabeth Becker, “Poor Nations Can Purchase Cheap Drugs Under Accord,” New York Times, August 31, 2003. Available at http://www.nytimes.com. 70. World Trade Organization, “Decision Removes Final Patent Obstacle to Cheap Drug Imports.” Available at http://www.wto.org/english/news_e/pres03_e/ pr350_e.htm (accessed January 5, 2004); Christof Maletsky, “Namibian Firm Will Produce AIDS Drugs, Says Minister,” Namibian, June 11, 2003. Available at http:// archives.healthdev.net/af-aids/threads.html (accessed June 12, 2003). 71. Anil Soni and Ira Magaziner, “Getting More for the Money: How Lower Prices Were Possible, Progress to Date, and the Challenges Ahead.” Available at http://www.clintonfoundation.org/110105-nr-cf-hs-ai-arv-usa-fe getting-more-for-themoney.htm (accessed May 25, 2006) 72. Poku and Whiteside, “25 Years of Living with AIDS,” 254. 73. Barnett and Whiteside, AIDS in the Twenty-First Century, 263; Henri Cauvin, “Mining Company to Offer H.I.V. Drugs to Employees,” New York Times, August 7, 2002, C1; Lawrence Altman, “U.N. Urges Tripling of Funds by ’08 to Halt AIDS,” New York Times, June 1, 2006, A6. 74. Barnett and Whiteside, AIDS in the Twenty-First Century, 349–352. 75. World Health Organization, “A Commitment to Action for Expanded Access to HIV/AIDS Treatment.” Available at http://www.who.int/entity/hiv/pub/prev_car/en (accessed June 20, 2003); Lawrence Altman, “W.H.O. Aims to Treat 3 Million for AIDS,” New York Times, December 1, 2003, A6. 76. World Health Organization and United Nations Joint Program on HIV/AIDS, “Global Access to HIV Therapy Tripled in Past Two Years,” 3. 77. Anne-christine d’Adesky, Moving Mountains: The Race to Treat Global AIDS (New York: Verso, 2004), 13; Alexander Irwin, Joyce Millen, and Dorothy Fallows, Global AIDS: Myths and Facts (Cambridge, MA: South End Press, 2003), xxii. 78. Global AIDS Alliance, “President Bush’s Record on the Global AIDS Epidemic.” Available at http://www.globalaidsalliance.org/policyupdate.html (accessed November 11, 2003); d’Adesky, Moving Mountains, 25–26. 79. UNAIDS, Report on the Global AIDS Epidemic 2006, 13. 80. Sebastian Mallaby, “Bush’s Talk and Results on AIDS,” Washington Post, May 29, 2006, A23. 81. Amy S. Patterson, The Politics of AIDS in Africa (Boulder, CO: Lynne Rienner Publishers, 2006), 150, 184. 82. “Children Missing Out on HIV Drugs,” BBC News, May 30, 2006. Available at http://newsvote.bbc.co.uk/mpapps/pagetools/print/news.bbc.co.uk/1/hi/health/ 5016424.stm. 83. Global Fund, “Pledges.” Available at http://www.theglobalfund.org/en/files/ pledges&contributions.xls (accessed May 28, 2006). 84. Global Fund, “Global Fund Grants Progress Summary.” Available at http:// www.theglobalfund.org/en/funds_raised-reports (accessed May 28, 2006). 85. Global Fund, “Global Fund Closes Funding Gap,” press release. Available at http://www.theglobalfund.org/en/media_center/press/pr_051216.asp (accessed January 3, 2006).

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86. Global Fund, “Background.” Available at http://www.theglobalfund.org (accessed June 18, 2003). 87. In Africa, the percentage of CCM positions held by civil society representatives varies greatly, from 13 percent in Madagascar to 56 percent in Malawi. Patterson, The Politics of AIDS in Africa, 74–75. 88. Copson, “The Global Fund and PEPFAR”; Patterson, The Politics of AIDS in Africa, 148–149. 89. White House, “Remarks by the President During Announcement of Proposal for Global Fund to Fight HIV/AIDS, Tuberculosis and Malaria.” Available at http:// www.whitehouse.gov/news/releases/2001/05/print/200105211-1.html (accessed June 20, 2002). 90. Global Fund, “Voting Board Members.” 91. UNAIDS official, phone interview with author, October 15, 2002. 92. The Framework Convention on Tobacco Control will likely increase taxes on cigarettes and ban tobacco advertising in the approximately 150 countries that had ratified it by 2006. Ania Lichtarowicz, “Landmark Tobacco Treaty Triggers Debate,” BBC News, June 24, 2003. Available at http://newsvote.bbc.co.uk/mpapps/pagetools/ print/news.bbc.co.uk/2/hi/health/3048463.stm (accessed June 24, 2003). 93. Poku, “HIV/AIDS Financing,” 354. 94. It is likely that as new, more powerful ARVs are developed, brand-name producers will charge high prices for them. For example, in 2003, Roche announced the release of Fuzeon, which will be sold in Western Europe for nearly $20,000 per year. Alison Langley with Melody Peterson, “AIDS Drug Is Priced by Roche,” New York Times, February 25, 2003, C1.

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11 Trading Life and Death: AIDS and the Global Economy Asia Russell

My idea of a better ordered world is one in which medical discoveries would be free of patents and there would be no profiteering from life or death. —Indira Gandhi1

Brazil’s program of universal, free ARV treatment access is one of the earliest and most-repeated examples of the feasibility and effectiveness of largescale ARV treatment programs in resource-poor countries. Pressured by Brazilian AIDS activist organizations, the government began providing antiretroviral treatment as a fulfillment of its obligation to uphold the human right to health care, a right articulated in the Brazilian constitution. Because of Brazil’s relatively recent implementation of a national regime of product patent protection for pharmaceuticals (in 1996) and its national capacity for local production of generic ARVs and other important medicines, the Brazilian National AIDS Program could rely on generic versions of ARVs at a fraction of the cost of their brand-name equivalents. The office of the United States Trade Representative (USTR) and several multinational pharmaceutical companies responded over the years to Brazil’s efforts to promote access to affordable generic medicines with various bilateral and international trade pressures and aggressive lobbying, and the international AIDS treatment activist movement responded with support and solidarity. In 2005, however, Brazil’s government decided that it would accept an offer of a price cut from Abbott for a second-generation ARV called Kaletra (a combination lopinavir and ritonavir), rather than issue a compulsory license that would permit generic production of the patented medicine. This decision rejected the guidance of the Ministry of Health, the demands of the influential advocacy community, and the best practice according to international 225

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technical experts. Economic analysis showed that the final price reduction and other commitments offered by Abbott would not compare favorably with the cost savings that could have been achieved through local production of lopinavir and ritonavir with sufficient economies of scale. Other benefits of a compulsory license would have included the possibility of sub-Saharan African and other developing countries importing Brazil’s low-cost generic medicine; “South-South” technology transfer to develop local production capacity for newer ARVs in other middle-income and low-income countries; and a country well regarded for its influential National AIDS Program leading by example in its use of the public health flexibilities such as compulsory licensing that are part of the minimum standard for intellectual property rights protection required by the World Trade Organization (WTO) in the agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS). Brazil defended its decision and took similar steps after protracted negotiations with Gilead, this time over a second-generation ARV medicine patent protected in Brazil, called Viread (tenofovir). Brazilian activists decided to file a lawsuit against the Ministry of Health to attempt to change the outcome after the negotiations were complete. Interlocked and significant imbalances in power fueled these imperfect outcomes, and they lie at the heart of related decisions many developing countries are facing as they begin to scale up their national AIDS treatment programs. In Brazil, these power imbalances include an imbalance in power bilaterally between Brazil and the United States in which Brazil appeared to calculate that a choice not to break a patent monopoly would increase its likelihood of securing concessions in areas of trade policy that are completely unrelated to public health and access to lifesaving medicines. An imbalance in power between the Brazilian Ministry of Commerce and the Ministry of Health is also relevant. Particularly important for the purposes of this chapter is the imbalance of power between people living with AIDS and the decisionmakers they sought to influence and had successfully influenced in the past. There is a global significance to the asymmetrical power relations that helped to determine the outcome of these negotiations over how protection of intellectual property rights for medicines would be balanced against moral imperatives and legal duties such as realizing the human right to health. In 1986, four years after Indira Gandhi argued at the World Health Assembly against patents on essential public goods such as medicines and against profiteering at the expense of health, the Uruguay Round of trade negotiations was launched. This negotiation, unprecedented in scope, concluded with the creation in 1994 of the WTO, with 128 initial member states. One year after the birth of the WTO, triple-combination ARV treatment in industrialized countries began to transform HIV infection from a death sentence into something approaching a chronic, manageable illness2—with a price tag of at least $15,000 per patient per year for ARV combinations alone.3 Of approximately

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40 million people living with HIV as of 2006, only 1.3 million in the developing world have access to ARV treatment,4 or approximately one in six of those people living with AIDS who are so immune compromised that they will die without ARV in approximately two years. The prohibitive cost of life-sustaining ARV treatment is a major determinant in predicting not only the effectiveness of existing treatment scale-up projects5 but also the likely pace of treatment expansion.6 Lack of access to HIV treatment worldwide is one grim dimension of a larger catastrophe: in 2004 one-third of the world’s population had no access to essential medicines;7 every day 15,000 people in developing countries died from untreated HIV, tuberculosis, and malaria alone.8 The relationship between access to affordable treatment for HIV and other diseases of poverty and efforts by the world’s most powerful economies (in particular the United States and other countries where pharmaceutical profits are concentrated) to increase the integration of global markets among countries at all levels of development through mechanisms such as the WTO and bilateral and regional trade agreements is also informed by the example of Brazil, to the extent that effective tactics in an imbalanced negotiation will most likely be repeated. This chapter will review the major shift in international obligations to protect and enforce intellectual property rights (IPRs) that were negotiated during the Uruguay Round and the consequent impact on access to affordable medicines in developing countries, in order to explore new opportunities for effective advocacy, despite significant imbalances of power. We will focus on the role of the United States in achieving—and exploiting—this major shift, both at the WTO and in bilateral forums, at times successfully obstructing the availability of generic medicines manufactured in the global South. Finally, we will discuss efforts by activists and other civil society actors to halt and begin to reverse the subordination of the right to health and access to medicines to the narrow commercial interests of drug manufacturers.

Globalization, Drug Pricing, and Intellectual Property Rights A hallmark of globalization is the promotion of trade liberalization— increases in the flow of goods and services between countries and the elimination of tariffs and other protectionist barriers.9 Supporters argue that application of trade liberalization can lift countries and poor people out of poverty and promote economic development. Critics of globalization point to countries such as Mexico, where poverty has increased despite adoption of the socalled free trade model, or to circumstances of gross unfairness, such as poor countries that open their markets to foreign products subsidized by US, Western European, or other wealthy governments at prices too low for domestic

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manufacturers in the developing world to compete with.10 Several analyses of the promises of growth that accompany trade liberalization, including of the Doha Round of trade negotiations, launched at the Doha WTO Ministerial in 2001, conclude that even assuming an optimistic scenario, the potential economic gains may not be great enough to outpace the projected economic costs over time—and the risks to developing countries are most pronounced.11 Globalization is often described as a rigorously tested means to achieve the goal of poverty reduction and international development,12 but the potential negative human costs, in particular the public health impact, associated with trade liberalization are important consequences with their own inherent impact on poverty and development to consider. For example, Lurie et al. argued that the macroeconomic shifts that accompany globalization could increase vulnerability to HIV infection within a population and decrease the strength of a country’s response to HIV through such features as artificial limits on national health sector spending, increased privatization of essential services, and an increase of rural-urban migration.13 In addition, developing countries, particularly in sub-Saharan Africa, have accumulated billions in bilateral and multilateral debts. These debts emerge from loans that in some cases have been squandered by brutal dictators and in others have funded failed projects, projects that have disproportionately benefited the wealthy, or projects that have been accompanied by increased risk of the spread of HIV and other infectious diseases.14 To continue to qualify for loans or to qualify for limited relief or in some cases cancellation of debt service payments, these financial institutions require countries to comply with economic conditions that further weaken already overburdened health and education systems. These policies only intensify the tremendous burden placed on already fragile health systems of scaling up access to ARV treatment and AIDS care in poor countries. For example, the reduced investments in developing country health sectors and health sector spending limits in the developing world are a devastating byproduct of policies of macroeconomic and fiscal restraint promoted by international financial institutions such as the IMF and often embraced by developing country governments, particularly ministries of finance. These policies treat health spending, such as the recurrent costs of the wages of public sector health-care workers, not as lifesaving investments in economic growth but as potential drivers of inflation. In addition to these contradictions between the stated goals of trade liberalization and the actual outcomes of such policies, free trade includes clear contradictions. The creation of the WTO was accompanied by the introduction of TRIPS, the most sweeping agreement on IPRs in the world. TRIPS requires WTO member states to comply with a minimum standard of protection and enforcement of IPRs in the form of patents, copyrights, trademarks, and other regimes. Although supporters of globalization reject protectionist

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measures as inefficient, TRIPS requires highly inefficient temporary government-controlled monopolies. In the case of patent monopolies on pharmaceutical products—which confer exclusive rights over the manufacture, sale, importation, or use of a product for a period of twenty years—TRIPS can restrict access to life-sustaining medicines when patent rights holders use their temporary monopoly to charge prices that are as high as the market will bear. Why was an ambitious agreement on IPRs included among the agreements that created the WTO, an organization devoted to promoting the fundamentals of “free trade”? The answer is that multinational pharmaceutical companies, who stood to gain much by increasing global standards for IPRs, correctly identified the Uruguay Round as an opportunity to strengthen these standards dramatically. Pharmaceutical companies worked closely with industrialized countries, most notably the United States, over many years to achieve this goal.15 Their efforts incorporated the use of an array of tactics, including nontransparent negotiations, economic bullying, and linking often illusory promises of gains in other policy areas to accepting new rules governing IPRs.16 An important point is that TRIPS requires that countries adopt twentyyear patent terms for all categories of inventions. According to a World Intellectual Property Organization (WIPO) study commissioned during the Uruguay Round, forty-nine of ninety-eight countries belonging to the Paris Convention for the Protection of Industrial Property had excluded pharmaceutical products from patentability.17 Because TRIPS requires uniform treatment of all patentable products, an essential good, such as a medicine, is given the same treatment as any other invention. Many industrialized countries that lobbied for TRIPS during the Uruguay Round had tailored their own national IPR regimes in order to benefit local industries and facilitate economic development, selectively excluding some products from IPR protection. Once these countries had increased their own economic development and a benefit from broad, less selective IPR protection and enforcement was clear, they began adopting TRIPS-style IPR regimes.18 This underscores a second contradiction: the means by which developed countries aided their development—heterogeneous national rules governing protection of IPRs—would be denied developing countries under TRIPS. Countries that led resistance in the Uruguay Round to the inclusion of IPRs in trade negotiations found themselves targeted bilaterally by the United States.19 They were promised more bilateral pressure if they did not yield and accept TRIPS.20 Patents and other forms of IPRs are tools that serve a purpose: they are the means for disseminating access to an innovation to the public. Ideally they strike a balance between the interests of the public and the inventor. The twenty-year monopoly granted to a pharmaceutical company for a medicine, which in turn permits a patent rights holder to charge a price much greater

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than the marginal cost of production, is a reward granted to an inventor in exchange for access to her invention. IPR regimes affecting pharmaceuticals result in significant increase in price because cost-cutting generic competition is only possible after the death of a patent.21 Implementing the terms and conditions of TRIPS, or the even stricter standards for IPR protection and enforcement in new bilateral trade agreements, is accompanied by significant economic and human costs. In addition to increased costs of medicines in poor countries, patent monopolies and other forms of IPR protection require investment in national infrastructure, for example, to support the review of patent applications or judicial provisions for IPR enforcement.22 Thus developing countries must balance any possible future benefit derived from implementation of a TRIPS-style regime against the immediate benefit gained by foreign patent filers, particularly in the United States, who derive immediate benefits in the form of transfers of wealth from royalty payments and licensing fees.23 The WTO’s asymmetrical favoritism toward the interests of wealthy countries where most IPR holders are based underscores a different aspect of globalization—not its characteristics, but the context in which it is constituted. The geopolitical environment in which the international rules governing IPR protection were created is biased against the legitimate development interests of developing countries and their citizens. In the case of IPRs and access to life-saving HIV treatment, the international mobilization of civil society has sparked controversy and debate regarding the validity of TRIPS, potentially weakening the negotiating position of the United States and other countries that are primary markets for the research-based pharmaceutical industry.

Separating Myth from Fact and Spin from Reality At the same time that people living with HIV began drawing attention to the likely public health impact of TRIPS and criticizing the countries that created it, they were criticizing donor countries, UN institutions, and recipient countries for refusing to support and fund ARV treatment in poor countries. The price of ARV treatment in developing countries in 2000 largely approximated the price in wealthy countries. Policymakers pointed to the colossal cost of treatment access and argued that a focus on treatment for HIVpositive people in poor countries was misguided and utopian. Aid officials and public health leaders argued that Africans were not capable of complying with HIV treatment regimens and that access to clean water, food, and basic medicines for prevention and treatment of opportunistic infections should trump access to ARVs, as if the interventions were mutually exclusive. ARV treatment is the foundation of HIV management in Western countries but was

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described as an indulgence or an afterthought in poor countries with generalized epidemics. In 2000 at the International AIDS Conference, for example, WHO officials presented the fragile health systems of most developing countries as arguments against an aggressive effort to expand HIV treatment access.24 Until 2002, the WHO Essential Drugs List (EDL), the gold standard guiding rational drug use in poor countries, excluded ARVs—because of cost.25 Of these medicines, many are under patent in developing countries; in 2001 a commonly prescribed combination of ARVs was found to be patent protected in a majority of sub-Saharan African countries in a study supported by research-based pharmaceutical companies.26 Dramatic price reductions brought about through generic competition bolstered the effectiveness of activist efforts to shame decisionmakers into abandoning trade policy that put drug company profit motives before public health and to pressure them to endorse ARV treatment as feasible and necessary in poor countries. The unfounded rhetorical argument that ARV treatment was simply too complicated to be exported to regions of the world most heavily impacted by untreated HIV was further weakened when people living with HIV began to mobilize and demand access to treatment. Pharmaceutical companies initially supported the position that HIV treatment should not be “wasted” in sub-Saharan Africa.27 Other arguments—that HIV prevention efforts in Africa would suffer if too great an emphasis were placed on treatment28 or that Africans had no concept of “Western time” and therefore could not be trusted to understand the importance of complying with combination treatment regimes—were routinely invoked as well.29 Following the market entry of fixed-dose combination Indian generic ARVs at $350 per person per year in 2001, which would eventually drop to as low as $150 per year, the cost of brand-name equivalent medicines came tumbling down, and the talking points of treatment opponents shifted away from the cost of treatment, focusing instead on the array of nonprice factors associated with treatment roll-out. The primary objective of the pharmaceutical industry was not to prevent treatment access in poor countries but to preserve the fundamental principles that permit the industry to charge exorbitantly high prices in the United States and the handful of other countries where the industry earns the bulk of its profits. In 2000, low-income countries represented only 1.81 percent of global prescription drug sales; over 95 percent of drug sales around the world occurred in the world’s ten biggest pharmaceutical markets.30 The fact that expanding profits in the wealthy minority of markets could come at the expense of the health of people with HIV and other treatable diseases of poverty in the rest of the world is a risk that pharmaceutical companies continue to manage largely through spin, rather than substantive policy change. The rhetoric used by the pharmaceutical industry and its allies warrants scrutiny, particularly because, as treatment scale-up progresses in poor countries, the predictions of the industry have not come true. Moreover, this rhetoric

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is reemerging as treatment activists focus on increasing access to patent protected second-generation ARVs, which are far more costly than older ARVs.31 Three dominant myths describe the underpinnings of this rhetoric. Myth One Increased IPR protection for medicines in developing countries is necessary, as it accelerates development by innovation and increases foreign investment. The director of the economic and commerce bureau for the Embassy of Jordan to the United States stated publicly at a US forum on bilateral trade agreements that pharmaceutical companies were not investing in his country, although he had been promised that they would, following completion of a bilateral free trade agreement (the US-Jordan FTA) with the United States. He implored companies to come and invest.32 Although weak IPR regimes are often blamed for low levels of investment by corporations such as pharmaceutical companies in countries, there is no evidence to suggest that foreign investment is impossible in countries with a weak IPR system. Both China and Brazil, before amending their patent laws to come into compliance with TRIPS, had high levels of foreign investment.33 Likewise, establishing a strong IPR system does not cause domestic innovators suddenly to emerge.34 In fact, implementation of strong IPR regimes in several developing countries where TRIPS first came into effect was accompanied by a strong upsurge in patent applications submitted by foreign filers—primarily from the United States.35 Myth Two Generic production by copycat companies in India, Brazil, Thailand, or elsewhere is tantamount to theft. Strong IPR regimes are necessary in order to reward costly and risky innovation and in order to stimulate research and development (R&D) into new medicines. R&D into new, innovative medicines must be promoted, and the pharmaceutical industry has a crucial role to play in realizing that necessity. Clear distortions in the current system, however, show that strong protection and enforcement of IPR for medicines can lead to perverse incentives and other significant problems. For example, of medicines granted patent protection in the United States between 1989 and 2000, 76 percent were determined by the FDA to have no therapeutic benefit over existing medicines and fewer than 1 percent could be used for neglected diseases.36 Patent monopolies have helped make the pharmaceutical industry one of the wealthiest in the world and the most profitable in the United States.37 Strong IPR can actually hinder innovation, by rewarding the filing by companies of overbroad patent claims that can trap other innovators later in infringement claims. Moreover, the pharmaceutical industry invests on average twice the amount in marketing, advertisement, and administration than it

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does in R&D.38 In many cases, the public sector has played an important role in funding R&D in medicines; charging taxpayers several times for an essential good represents another distortion brought on by the current marketdominated IPR system. Pharmaceutical executives have sometimes claimed that decreased R&D in HIV medicines might be the result of increased publicity and negative attention focused on companies that are working in AIDS.39 In fact, there has not been a major innovation in HIV treatment for several years, because of shortcomings in the R&D pipeline for ARVs, not a decrease in investment in HIV research, which is still a very profitable market for industry.40 In fact, the inefficiencies and corruptions of the current patent-based system—in rich and poor countries—has been the subject of international attention and has caused at least one high-profile defection within the pharmaceutical industry.41 The patent system itself includes provisions for suspending a patent monopoly through use of a “compulsory license,” or government authorization of production of a medicine by a third party, such as a generic manufacturer, without the permission of the patent holder. In almost all cases a reasonable royalty must be paid the patent rights holder, and price reduction is achieved through competition among producers. Relatively broad provision for compulsory licensing was included in TRIPS, in part because wealthy countries are some of the most frequent users of compulsory licensing and government use provisions—despite the objections of brand-name pharmaceutical companies.42 Myth Three Patents do not impede efforts to scale up and sustain access to treatment; industry-controlled price reductions for HIV treatment are sufficient to increase access to affordable medicines. The high prices that accompany patent monopolies are not the only factor that impedes access to medicines in poor countries. Nevertheless, they are important barriers to affordable medicines access, both in their current status and in the near future, when increasing numbers of countries that produce or import generic medicines introduce restrictions preventing or limiting these practices. Recent studies have shown that the fixed dose combination of AZT plus 3TC, sold in the United States as Combivir (GlaxoSmith Kline), is patent protected in the majority of sub-Saharan African countries43 and in some countries with existing domestic manufacturing capacity, such as Thailand. GlaxoSmithKline’s differential price for poor countries is more expensive than the generic version.44 In China, recent reports that Glaxo SmithKline is enforcing its patent on 3TC and has not granted a voluntary license to generic producers of 3TC mean that people with HIV are more likely to have access to a first-line regimen containing both ddI and d4T, two ARVs that have high rates of toxicities when taken together. The cost of Glaxo

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SmithKline’s patented 3TC is preventing access to effective combination therapy. In 2006, Boeringher Ingelheim began notifying several generic manufacturers in several east African countries that it planned to enforce its patent on nevirapine, after reports that generic versions were available. Because of international pressure and criticism, pharmaceutical companies were forced to offer price reductions for their HIV medicines for poor countries, beginning in 1999. These limited concessionary reductions in price are insufficient, on their own, however. They typically do not match the price reductions possible with robust competition, they exclude middle-income countries, they are managed by outside third parties that add a layer of bureaucracy to the process, and they discriminate by sector—even though many poor patients rely on the private sector, particularly since public sector spots for ARV treatment generally fill up very quickly. Recent ARV shortages have underscored the need for multiple suppliers, rather than relying on only a name brand manufacturer.45

Brave New Worlds: The Doha Declaration, Free Trade Agreements, and a Post-2005 Reality In 1999 AIDS activists learned that the US government was using its economic power to punish developing countries that were attempting to promote broader access to affordable generic medicines, including HIV drugs. The pharmaceutical industry was using lawsuits, propaganda, and disinformation to quash these efforts, and the United States complemented these efforts with use of its “301” authority, a mandate from Congress to the USTR to designate countries with national policies that present a “barrier to trade” with the United States. The USTR and legislators employed a host of other tactics, including the threat of trade sanctions, the denials of trade preferences, and bilateral pressure at the highest levels of the executive branch. In the case of South Africa, the Clinton administration had taken extraordinary measures to undermine that country’s efforts to transform its existing medicines policies, a holdover from apartheid, into a national plan that would increase the affordability and access. Pharmaceutical companies and the USTR claimed, inaccurately, that South Africa was violating its TRIPS obligations with this new act; in fact, South Africa was prioritizing public health in a manner that was completely legal according to the rules of TRIPS. Similar examples of bilateral pressure levied against Brazil and Thailand helped spur concerned activists and other experts to action. After high-profile disruptions of Vice President Al Gore’s appearances during his first week on the presidential campaign trail in 1999, the Clinton administration took note of a trade policy debate that had gathered very little attention up until that point. After several months of pressure, USTR Charlene

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Barshefsky announced an official end to the disputes with South Africa over the Medicines Control Act. South Africa was removed from the Special 301 “watch” list. By December 1, 1999, Clinton had used the occasion of World AIDS Day, during the failed Seattle WTO Ministerial, to announce an end to US pressure on any sub-Saharan Africa country attempting to use WTO-legal means to increase access to affordable generic medicines to treat HIV. Several months after that, an executive order formalized that statement. Meanwhile, the United States was engaged in a similar climbdown in Thailand, where Thai people living with HIV were demanding an end to USTR pressure preventing the royal Thai government from issuing a compulsory license to produce the ARV ddI. After a threatened demonstration against Al Gore ahead of the New Hampshire primary in 2000, the USTR sent a letter directly to the Thai minister of trade, as well as relevant Thai NGOs, stating that it was the Thai government—not the US government—that had chosen to issue a compulsory license. This extraordinary reversal of US trade policy was only possible because of international criticism and attention. After the election of George W. Bush, many observers predicted that the priorities of the new administration would be inconsistent with efforts to balance the power of the USTR and the pharmaceutical industry with the urgent need to expand access to affordable treatment and that the momentum gained under the Clinton administration would be lost. In 2000, the biennial International AIDS Conference was held for the first time in a developing country—South Africa. This offered an extraordinary opportunity to focus international attention on the growing demand by people living with HIV/AIDS for the realization of the right to treatment for tens of millions of people in developing countries. This rallying call for an end to immorality in the face of mass death was brought by more than 5,000 activists from across South Africa and around the world as well as the world’s leading HIV experts, researchers, and care providers during a major protest opening the conference. Later the South Africa case, where US trade pressure stopped as a result of civil society protest, resurfaced again in 2001 as the thirty-nine pharmaceutical companies continued with their lawsuit against the South African government, claiming the South African Medicines Control Act violated both the South African constitution and South Africa’s TRIPS obligations. Neither allegation was true; nevertheless, pharmaceutical companies proceeded with their court case, until the liability associated with international protest coupled with an activist legal strategy designed to expose abusive pharmaceutical company pricing strategies exceeded any gain they might have derived from a victory in the courts. They announced a complete withdraw of the four-year lawsuit. It became clear that 2001 would be a year in which access to medicines in the context of trade policy would surface many times: the WTO Council for TRIPS, chaired in 2001 by Zimbabwe, focused on the intersection between

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TRIPS and public health and on impediments to access to affordable treatment, particularly HIV treatment, brought on by TRIPS. Zimbabwe sought a formal declaration that TRIPS should not impede public health. After several contentious meetings of the TRIPS Council, it became clear that the United States, along with other developed country WTO members, was working against any declaration that could be seen to weaken the authority of pharmaceutical industry myths that strict IPR regimes are a critical element of development.46 In April, UN Secretary General Kofi Annan electrified the world at an Abuja meeting of the Organization of the African Union by calling for the creation of a Global Trust Fund to attract billions in new resources to fund treatment access in developing countries, increasing international attention to the gap in HIV treatment access, and offering additional momentum to negotiators from African countries at the TRIPS Council.47 After the attacks on September 11, 2001, the focus of the Bush administration on assuring access to a sustainable and affordable supply of antibiotics to treat anthrax presented another example of a double standard wielded by powerful actors. Secretary of Health and Human Services Tommy Thompson announced that the United States would issue a compulsory license if Bayer refused to reduce the price of Cipro. The same mechanism that the United States had insisted would undermine the strength of the pharmaceutical industry, and therefore would undermine the availability of access to new medicines, was being described not only as a viable option by the world’s richest country but as something it would not hesitate to do in order to protect the country’s inhabitants. Zimbabwe and other developing country WTO members leveraged the opportunity the Cipro case presented; controversies over access to medicines and IPRs were considered a possible “dealbreaker” at the start of the Fourth WTO ministerial meeting in Doha in November 2001. During negotiations, leaders in the Africa Group, as well as India and Brazil, worked with NGOs to secure formal affirmation of WTO members’ rights to prioritize public health and access to medicines while implementing TRIPS obligations. The Doha Declaration on the TRIPS Agreement and Public Health (the Doha Declaration) was a political victory, proclaiming that pressure on developing countries attempting to make use of flexibilities in TRIPS would be a thing of the past. Unfortunately, this was not the case. After the passage of the Doha Declaration, the United States indicated its new strategy—to withdraw IPR pressures from the forum of WTO, newly politicized by the success of the developing countries, and shift instead to the forum of bilateral and regional trade agreements. In order to pressure developing countries into accepting TRIPS, the United States had argued that without TRIPS, bilateral pressures would increase. After the Doha Round was launched, the United States regained and increased its power by reverting to and dramatically expanding bilateral trade

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pressures, negotiating many bilateral and regional free trade agreements (FTAs). Negotiated with the benefit of the Trade Promotion Authority (TPA), which does not permit the US Congress to amend any FTA, FTAs are deals made largely in secret negotiations. Draft template texts are brought to the table by the USTR, and the United States is uniquely positioned, as the world’s superpower, to be able either to threaten to withhold or promise to grant trade or other preferences in exchange for concessions in key areas.48 The profusion of bilateral activity has resulted in concern of the WTO Secretariat about its own legitimacy and accusations by other governments of US “blackmail.”49 The US trade agenda regarding IPRs in FTAs includes significant provisions that would exceed WTO standards for IPR protection or would obstruct the implementation of key public health flexibilities reaffirmed in the Doha Declaration but unimplemented by many developing countries. These provisions include the following: •

•

•

Limitations to compulsory licensing: TRIPS, as reaffirmed by the Doha Declaration, permits countries to determine the grounds upon which to grant a compulsory license. In FTAs with some countries, the USTR is seeking drastic limitations to compulsory licensing, further crippling an important public health safeguard that countries are already relatively reluctant to use because it is known to rankle the United States and the pharmaceutical industry. Expanding the scope of patentability: What does and does not qualify as patentable is up to a country to decide. Although TRIPS took away the ability of a country to exclude categories of inventions such as medicines from patentability, countries can still decide the breadth of the scope of patentability. The World Health Organization advises countries that excessively broad standards for patentability can undermine public health objectives.50 New monopoly rights for drug company “test data”: Pharmaceutical companies use the data generated in clinical trials to show that their product is safe and effective, in order to gain national registration by a drug regulatory authority, such as the US FDA. Generic companies seeking registration of their product do not duplicate these clinical trials but show that their product is equivalent to the brand-name product—that brand-name and generic medicines are present in the blood at the same concentrations, for example. They simply refer to the test data that proprietary companies have already generated. FTAs require countries to accept new monopolies on test data, in the form of data exclusivity, which would delay the entry of cost-cutting generics to the market and would also potentially limit compulsory licensing, as generic drug companies would not begin costly produc-

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•

•

•

tion of a compulsorily licensed medicine without assurance that the drug could actually be approved and brought to market. Pharmaceutical companies and the United States, Japan, the European Union, and Canada fought to include data exclusivity as a standard in TRIPS for protection of undisclosed test data, but they were unsuccessful. The linkage of drug registration to patent status: Drug regulatory authorities are required in FTAs not to grant registration to any product with existing patent claims. Drug regulatory authorities have no expertise in patent enforcement or patent examination, but US FTAs give them a new authority. Drug companies already have the courts for allegations that patent rights have been infringed; expanding claims to drug regulatory authorities would likely result in a defense of illegitimate patent claims, as has been the case in the United States.51 Elimination of parallel imports: TRIPS clearly stated—and the Doha Declaration reaffirmed—that the parallel importation, or shopping on an international market for the best price of a name-brand medicine, is permissible—it is a matter of national jurisdiction.52 In some FTAs the United States has lobbied for, and won, a ban on parallel importation. Extension of the patent term: FTAs contain provisions that would extend the patent term beyond twenty years.

Not all FTAs include all of these provisions, but all contain some. In the case of the US-Singapore FTA, for example, the United States extracted the most extreme concessions on intellectual property, whereas in the US–Central America Free Trade Agreement (CAFTA), the intellectual property rules are excessive and undermine public health but are not as extreme as those provisions in the US-Singapore FTA. Singapore’s relatively higher level of economic development resulted in greater pressure by the United States to change its national priorities to include limits to generic drug access.53 One version of the US-Thai FTA negotiating text was leaked to the public, showing that this draft FTA contained extensive “TRIPS-plus” provisions, or IPR provisions that were far more restrictive than the standard set out by TRIPS, at least at that stage of negotiations. Thailand, like Brazil, relies on generic local production to ensure universal treatment access. Public health officials are very concerned that generic competition to bring down the high cost of second-line ARVs for Thai people will be impossible with a new US-Thai FTA. Congress included an amendment to the negotiating objectives of the TPA to direct the USTR to uphold the Doha Declaration;54 nevertheless the USTR has disregarded these objectives and is pursuing a TRIPS-plus agenda at the behest of the pharmaceutical industry. The United States asserts that several of its efforts to increase IP protection through FTA negotiations do not

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exceed the remit of TRIPS.55 For example, the USTR claims that requiring data exclusivity is simply fulfillment of a country’s TRIPS obligations, whereas experts agree that it is a TRIPS-plus standard. In this case, the implementation of new monopoly rights for pharmaceutical companies on test data will have a negative public health impact; even the United States concedes this fact.56 In coordination with a variety of international fair trade activists, AIDS and public health campaigners have successfully slowed or effectively stopped negotiations for some FTAs, including the Free Trade Area of the Americas and the U.S.-Southern African Customs Union FTA but have not successfully reversed TRIPS-plus provisions. Even double standards, protest by developing country negotiators, and national protests regarding IPR provisions have not derailed these aspects of trade talks, which the United States considers integral.57 The forum of bilateral negotiations is proving ideal for the United States and the pharmaceutical industry to extract TRIPS-plus concessions that were unacceptable even during the Uruguay Round that led to the creation of the WTO, when negotiations were skewed tremendously in favor of industry and the wealthiest countries. The United States is also engaged in high-stakes bilateral pressure with countries outside of formal FTA negotiations. India, the country with the largest AIDS epidemic and the largest source of generic ARVs in the developing world, came into compliance with WTO rules requiring adoption of a product patent regime on January 1, 2005. In 2006, IPRs were a focus of both President Bush’s and Pfizer chief executive officer (CEO) Hank McKinnell’s visits to India. A treaty on science between the United States and India was planned, which will likely include IPRs. The prime minister is under pressure from the USTR and the pharmaceutical industry to adopt data exclusivity, a move that advocates say will increase the cost of medicines for Indian consumption as well as for export. India appears to be considering other advances in trade and bilateral relations that could occur if they trade away the TRIPS flexibilities that they fought for in 2001. In Thailand in 2006, after the WHO regional director, William Aldis, published a column in a national newspaper pointing out that an FTA with the United States would undermine public health, the United States intervened with the WHO director general to have Aldis removed from his post—taking away his influence.

Conclusions and Recommendations Rather than following a coherent logic, the laws of “free trade” in today’s global economy are better characterized as laws of the jungle. Coercion, nontransparency, misrepresentation of outcomes, and more are among the accept-

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able tools for use by negotiators who claim to represent the interests of citizens of the United States and other industrialized countries. With very little public attention, pharmaceutical companies exploited global trade negotiations as a critical opportunity to incorporate increased, universal standards of IPR protection with the rest of the global trade package that would become the WTO. In the more than ten years since that critical change, outcry from many expert stakeholders in the international AIDS community over the public health impact of stricter IPR rights has focused attention and criticism on the imbalanced and failed system by which advocates of strict IPR protection seek to reward and encourage pharmaceutical innovation. The extraordinary degree of attention on an issue considered as arcane as drug company patents has presented an important opportunity to win change. Unfortunately, increased pressure on US decisionmakers at the WTO has resulted in a shift in emphasis by the Bush administration to alternative forums where its IPR objectives are not subject to the same level of international scrutiny as has been present during recent WTO ministerial meetings. US IPR provisions in existing and pending bilateral and regional US FTAs, as well as ongoing bilateral discussions outside of the realm of FTAs, will hamper efforts to expand HIV treatment access, advancing trade objectives that prioritize the profit motives of US corporations rather than the national priorities of the citizens of developing countries. Likewise, the recent transformation of Indian patent law to include pharmaceuticals as well as agrochemicals and food as innovations that can be patented means that the world’s primary source of generic versions of ARVs could be disappearing.58 Pressure was successful in mitigating some negative aspects of the amended Indian Patents Act, but the fundamental problem remains. This development will be devastating for access to generic versions of newer medicines unless India commits to use the principle of the Doha Declaration to the fullest extent and to prioritize regular issuance of compulsory licenses. Unfortunately, except for a handful of countries, including Cameroon, Mozambique, Philippines, Zambia, Malaysia, and Indonesia, nonvoluntary licenses to increase access to medicines, for domestic use or for export through use of the permanent amendment to TRIPS, have not been as common as they need to be in order to drive down the cost of medicines.59 What can be done to increase the power of people with AIDS and other powerless people in the imbalanced arena of global trade? We propose six minimum policy recommendations, as follows, for countries and other actors in order to maximize the impact of the flexibilities secured by the Doha Declaration. Without accompanying commitments to joint action, particularly on developing countries to reject TRIPS-plus concessions to the USTR, these recommendations will not be helpful. A revitalized movement of grassroots activists and policy experts in the United States, working in solidarity with those united

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in opposition to the USTR’s efforts to pressure their countries to trade away health, will help ensure the powerful do not act without accountability: 1. Halt all bilateral and regional trade negotiations until a thorough independent analysis of the impact of new IPR provisions on public health and access to medicines is completed. Without an objective understanding of the real risks and benefits associated with expanding IPR protection for essential medicines, countries will continue to accept trade agreements that will compromise their ability to care for their most vulnerable citizens. 2. Implement retroactive as well as progressive application of the Doha Declaration to poor countries’ national IPR rules. In order to reap the full benefit of flexibilities affirmed in the Doha Declaration, countries must alter their own laws to create fast-track compulsory licensing and government use provisions that prioritize public health. Many countries’ compulsory licensing regimes are bureaucratic and do not take into account the lessons learned over the last five years. 3. Reform TRIPS-plus bilateral and WIPO-controlled “technical assistance.” Technical assistance from bilateral donor agencies such as the US Agency for International Development and agencies such as WIPO, which exist to defend intellectual property rights, has been used to toughen pharmaceutical company patent rights,60 and contradicts the evidence base that has accumulated regarding IPRs and access to medicines in developing countries, such as through the UK’s Joint Commission on Intellectual Property Rights and the WHO’s Commission on Intellectual Property Rights, Innovation, and Public Health. This model should be replaced with independent, public health–driven technical assistance bringing ministries of trade, industry, and health together with technical experts such as the WHO to coordinate efforts to develop intellectual property rules that prioritize public health and access to medicines for all. 4. Countries should exercise their rights to break patent monopolies on medicines in order to decrease price and increase access. Although the threat of compulsory licensing has been an effective way to drive down the cost of medicines, compulsory licenses must be issued in order to create an environment in which competition will decrease the cost of medicines as much as possible. 5. Establish regional mechanisms for fast-tracked compulsory licensing. In the four years since the Doha Declaration was ratified, the pressure on developing countries to ratchet up protection of IPRs has not been eliminated. Even a country such as Brazil, that has been willing to confront the United States regarding medicines-pricing policy, has refused to exercise the rights enshrined in the Doha Declaration. Alternative mechanisms that thwart the typical US and industry response of retaliation, such as a regional mechanism for compulsory licensing, are needed.

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6. Aggressively research and adopt new models for R&D in pharmaceuticals, vaccines, and other essential medical technologies to correct market failure. The market-driven R&D system leaves the world’s poor behind, despite their right to benefit from innovation that generates better, more effective, and affordable treatments for typically neglected diseases. Inefficient patent monopolies to reward innovation could be replaced with new systems that guarantee a focus on R&D for conditions that plague the world’s poor. The passage by the 2006 World Health Assembly of the resolution on essential R&D creates a critical opportunity to move forward toward the creation of a needs-based approach to R&D, rather than a framework that cedes all power to the priorities of the pharmaceutical industry. Multiple new obstacles are thwarting efforts by relatively powerless advocates in developed and developing countries who are working to ensure that public health and access to medicines are not eclipsed by the US drive to enact TRIPS-plus IPR regimes in the developing world and to disregard the promises contained in the Doha Declaration. But the logic of globalization, and the powerful actors that enact this logic, must be made subservient to the essential needs of poor people: among them the realization of the fundamental human right to health. The human costs associated with so-called free trade are too high to take any other path.

Notes 1. Address to the 35th World Health Assembly, May 6, 1982. 2. Centers for Disease Control, “HIV and AIDS 1981–2000,” MMWR Weekly Report 50, no. 21 (June 1, 2001): 430–434. These benefits were not immediately enjoyed by all HIV-positive people in wealthy countries, particularly marginalized people. For example, women with HIV did not experience declines in HIV mortality during the same period—in fact, death rates rose by 3 percent. See Jill Cadman, “Some Relief from the Epidemic,” Treatment Issues 11, no. 3 (March 1997), available at http://www.thebody.com/gmhc/issues/mar97.html. 3. The days of AZT monotherapy, which preceded combination AZT, were not inexpensive: AZT was the most expensive drug ever marketed, priced at $30,000 per year, before ACT UP forced Burroughs Wellcome, the manufacturer, to lower the price through direct action on the floor of the New York Stock Exchange. For an account of ACT UP’s successful efforts, see Patricia Siplon, AIDS and the Policy Struggle in the United States (Washington, DC: Georgetown University Press, 2002), chap. 2. 4. UNAIDS, 2006 Report on the Global AIDS Epidemic (Geneva, Switzerland: UNAIDS, 2006), 151. 5. D. G. Roels et al., “Virologic and Immunologic Response to Antiretroviral Therapy Among Patients Participating in the UNAIDS/Ministry of Health Initiative to Improve Access to Therapy for HIV-Infected Persons in Côte d’Ivoire,” abstract no. TuOrB295, International AIDS Conference, Durban, July 9–14, 2000, 13; S. Weiser et al., “Barriers to Antiretroviral Adherence for Patients Living with HIV Infection and

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AIDS in Botswana,” Journal of Acquired Immune Deficiency Syndrome 34, no. 3 (November 1, 2003): 281–288. For a discussion of other factors, including human resource and other infrastructure shortages, community mobilization led by people living with HIV/AIDS, and the impact of International Monetary Fund and World Bank macroeconomic policies, see Alan Berkman et al., “A Critical Analysis of the Brazilian Response to HIV/AIDS: Lessons Learned for Controlling and Mitigating the Epidemic in Developing Countries,” American Journal of Public Health 95 (2005): 1162–1172, and Lincoln Chen et al., “Human Resources for Health: Overcoming the Crisis,” The Lancet 364 (2004): 1984–1990. 6. Alan Whiteside et al., “Economists’, Public Health Experts’, and Policy Makers’ Declaration on Free Treatment for HIV/AIDS.” Available at http://www.heard.org. 7. WHO, WHO Medicines Strategy (Geneva, Switzerland: WHO, 2004), 3. 8. Ibid., 13. 9. Tony Barnett, “HIV/AIDS and Globalization—What Is the Epidemic Telling Us About Economics, Morality, and Pragmatism?” in State of the Art: AIDS and Economics (Barcelona, Spain: International AIDS and Economics Network, 2002). 10. See chap. 4 of Oxfam International, Rigged Rules and Double Standards: Trade Globalization and the Fight Against Poverty (London: Oxfam International, 2002). 11. See Mark Weisbrot and Dean Baker, The Relative Impact of Trade Liberalization on Developing Countries (Washington, DC: Center for Economic and Policy Research, 2002). 12. See, for example, briefing document released by the Office of the US Trade Representative, “CAFTA Policy Brief,” May 2005, available at http://www.ustr.gov/assets/ Trade_Agreements/Bilateral/CAFTA/Briefing_Book/asset_upload_file408_7749.pdf. 13. Peter Lurie et al., “Socioeconomic Obstacles to HIV Prevention and Treatment in Developing Countries: The Roles of the International Monetary Fund and the World Bank,” AIDS 9, no. 6 (1995): 1–8. 14. Ken Silverstein, “AIDS Could Follow African Pipeline: The Project Attracts Job-Seekers and Prostitutes—Experts Say That Boosts HIV Risk,” Los Angeles Times, June 18, 2003. 15. Peter Drahos, “Developing Countries and Intellectual Property Standard-setting,” Journal of World Intellectual Property 5, no. 5 (2002): 765–789. 16. Ibid. 17. The Paris Convention on the Protection of Industrial Property is an intellectual property treaty signed in 1883; it is administered by WIPO. 18. See Willem Pretorius, “TRIPS and Developing Countries: How Level Is the Playing Field?” in Global Intellectual Property Rights: Knowledge Access and Development, ed. Peter Drahos and Ruth Mayne (Hampshire, England: Palgrave Macmillan, 2002). 19. Peter Drahos and John Braithwaite, “Who Owns the Knowledge Economy? Political Organizing Behind TRIPS,” Briefing Paper 32 (Sturminster Newton, Dorset, UK: The Corner House, September 2004). 20. Peter Drahos, “Bilateralism in Intellectual Property.” Available at http://www .oxfam.org.uk/what_we_do/issues/trade/downloads/biltateralism_ip.rtf. 21. See Cecilia Oh, Manual on Good Practices in Public-Health-Sensitive Policy Measures and Patent Laws (Penang, Malaysia: Third World Network, 2003). 22. United Nations Development Program, Human Development Report 2001: Making New Technologies Work for Human Development (New York: United Nations, 2001), 136–137.

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23. Ibid., 133, 137. 24. O. Shisana and D. Tarantola, “The Role of the Health Sector in the Global Response to HIV/AIDS,” abstract no. TuPeE3917, International AIDS Conference, Durban, July 9–14, 2000, 13. 25. See “Comments Regarding the Inclusion of Antiretrovirals (ARVs) and the WHO Process for Updating the Model List of Essential Drugs (EDL), submitted on behalf of Health GAP (Global Access Project).” Available at http://www.who.int/ medicines/organizations/par/edl/gap_comments.doc. 26. A. Attaran and L. Gillespie-White, “Do Patents for Antiretroviral Drugs Constrain Access to AIDS Treatment in Africa?” Journal of the American Medical Association 286 (2001): 1886–1892. 27. For a discussion of oppositions to HIV treatment in the global South, see Paul Farmer et al., “Community-Based Approaches to HIV Treatment in Resource Poor Settings,” Lancet 358 (2001): 404–409. 28. Rachel Zimmerman and Mark Schoofs, “World AIDS Experts Debate Treatment vs. Prevention,” Wall Street Journal, July 2, 2007. 29. John Donnelly, “Prevention Urged in AIDS Fight: Natsios Says Fund Should Spend Less on HIV Treatment,” Boston Globe, June 7, 2001. 30. WHO, The World Medicines Situation (Geneva, Switzerland: WHO, 2004), 33. 31. WHO, Sources and Prices of Selected Medicines and Diagnostics for People Living with HIV/AIDS (Geneva, Switzerland: WHO, 2004). 32. “Jordan and Pharmaceuticals,” Washington Trade Daily 14, no. 44, March 3, 2005. 33. Jorge A.Z. Bermudez et al., The WTO TRIPS Agreement and Patent Protection in Brazil: Recent Changes and Implications for Local Production and Access to Medicines (Rio de Janeiro, Brazil: WHO/PAHO Collaborating Center for Pharmaceutical Policies, 2004), 89. 34. Carlos M. Correa, “Pro-competitive Measures Under TRIPS to Promote Technology Diffusion in Developing Countries,” in Global Intellectual Property Rights: Knowledge Access and Development, ed. Peter Drahos and Ruth Mayne (Hampshire, England: Palgrave Macmillan, 2002); United Nations Development Program, Globalization with a Human Face: Human Development Report (New York: United Nations, 1999), 75. 35. United Nations Development Program, Globalization with a Human Face, 68. 36. Tim Hubbard, “An International Treaty on R&D Investment” (presented at the meeting on Intellectual Property and Public Investment for Pharmaceuticals and Agriculture, Columbia University, New York, May 20, 2004). 37. See Families USA, Profiting from Pain: Where Prescription Drug Dollars Go (Washington, DC: Families USA, 2002). 38. Ibid., 5. 39. For example, Alan Beattie, “Poor Countries Left Behind on AIDS Treatment,” Financial Times (London), January 26, 2005. 40. IMS Health, “Market Report: Five Year Forecast of the Global Pharmaceutical Markets.” Available at http://www.ims-global.com/insight/report/global/na_europe .html, (accessed August 9, 2006). 41. Robert Pear, “Insider Challenges Drug Industry on Imports,” New York Times, September 24, 2004. 42. Carlos Correa, Integrating Public Health Concerns in Patent Legislation in Developing Countries (Geneva, Switzerland: South Centre, 2000), 95. 43. Attaran and Gillespie-White, “Do Patents for Antiretroviral Drugs Constrain Access?”

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44. See Médecins sans Frontières, Untangling the Web of Price Reductions, 8th ed., June 2005. Available at www.accessmed-msf.org. 45. Davis, Paul. “Demand for Two AIDS Treatments Could Soon Exceed Supply,” Wall Street Journal, March 4, 2005. 46. See, for example, US statement at TRIPS Council Meeting, June 21, 2001. Available at http://lists.essential.org/pipermail/ip-health/2001-June/001480.html. 47. See “Abuja Declaration on HIV/AIDS, Tuberculosis, and Other Related Infectious Diseases,” Abuja Summit on HIV/AIDS, Tuberculosis, and Other Related Infectious Diseases, OAU/SPS/ABUJA/3. Available at http://www.un.org/ga/aids/pdf/ abuja_declaration.pdf. 48. The web of extant and pending FTAs reveals a strategy of the United States to select a key country in a region as a natural precursor to a regional FTA or to negotiations with neighboring countries. In the case of the US-Chile FTA, for example, Chile was being courted by Mercosur, the Latin American trading bloc that is an important force in hemisphere-wide trade. In singling out Chile, the United States peeled that country off from Mercosurr while exploiting, among other things, a key opportunity to rachet up Chile’s standards for IP protection. For a discussion of the use of 301 authority in the past and present, see Peter Drahos, “Bilateralism in Intellectual Property.” 49. See Geoff Dyer et al., “US and France Clash over Cheap AIDS Drugs,” Financial Times, July 13, 2004. 50. WHO, Globalization, TRIPS, and Access to Pharmaceuticals, Policy Perspectives on Medicines, no. 3 (Geneva, Switzerland: WHO, 2001). 51. See chap. 10, “Patent Games—Stretching Out Monopolies,” in Marcia Angell, The Truth About the Drug Companies: How They Deceive Us and What to Do About It (New York: Random House, 2004). 52. See TRIPS, Art. 7 53. For a discussion of FTAs since the Doha Declaration, see Fredereick M. Abbott, “The WTO Medicines Decision: World Pharmaceutical Trade and the Protection of Public Health,” American Journal of International Law 99 (2005): 317–358. 54. HR 3009, the Trade Act of 2002, enacted August 6, 2002. 55. Carlos María Correa, Protection of Data Submitted for the Registration of Pharmaceuticals (Geneva, Switzerland: South Centre, 2002). 56. See John R. Hamilton, “FTA and Generics Do Coexist,” Diario Siglo Veintiuno, January 9, 2005. For a response, see Health GAP, “Response to USTR Fact Sheet on CAFTA and Access to Medicines—Myths and Realities: U.S. Pressure on Guatemala Regarding Data Exclusivity, CAFTA, and Access to Medicines,” Health GAP Policy Brief, March 16, 2005. Available at http://www.healthgap.org/press_ releases/05/021005_HGAP_BP_CAFTA_guatemala.pdf. 57. See “U.S., Colombians Reach Agreement on Andean FTA IPR Advisory,” Inside US Trade, August 20, 2004, and Marienella Ortiz, “TLC: Renuncia de Funcionario Revela Fragilidad del Perú en Negociaciones,” La Republica, September 16, 2004. 58. Saritha Rai, “India Adopts Patent Law Covering Pharmaceuticals,” New York Times, March 24, 2005. 59. Brook Baker, Processes and Issues for Improving Access to Medicine: Willingness and Ability to Utilise TRIPS Flexibilities in Non-Producing Countries. Issues Paper—Access to Medicines (London: DFID Health Systems Resource Centre, August 2004). 60. Michael Schroeder, “Drug Patents Draw Scrutiny As Bush Makes African Visit,” Wall Street Journal, June 9, 2003.

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12 Rhetoric and Reality: HIV/AIDS as a Human Rights Issue Joanne Csete

If, by some happy turn of events, well-funded HIV/AIDS prevention, treatment, and care programs materialized instantly in all countries, there would still be millions of people who could not benefit from them because of human rights abuse. Indeed, there are now millions of people for whom the provision of free or low-cost condoms, clean syringes, or good information on prevention of HIV transmission is useless because, for example, they are women and girls who face violence and abuse when they demand condom use of their sexual partners or they are injection drug users whose access to needle-exchange programs is impeded by police harassment or social stigma. Millions of young people cannot realize their right to basic information on HIV and safer sex in part because of the influence of religious conservatives on their governments. Many other such examples could be cited of human rights violations that impede HIV prevention programs or further marginalize those living with the disease. HIV/AIDS has had a special link to human rights and human rights violations from the first. Any disease that started out with the name “gay-related immune deficiency” would be likely to have some human rights challenges built in. The history of HIV/AIDS around the world has been shaped to a large degree by the fact that the persons first and most affected by the disease—sex workers, injection drug users, prisoners, and migrant workers in addition to gay and bisexual men, for example—did not generally enjoy political popularity and in many cases were without strong organizations or solidarity networks. The human rights challenges of galvanizing popular support or highlevel political energy for a fight against a disease affecting these populations were clear from the beginning. Jonathan Mann, founding director of the first United Nations AIDS program, the WHO Global Program on AIDS beginning in 1987, was the rare leader who understood from the start that combating human rights abuses 247

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would have to be an important part of fighting HIV/AIDS. Consistently and forcefully, Mann articulated the idea that discrimination and human rights abuse were not only the result of HIV/AIDS but also causes of it. Stigma and discrimination and the marginalization they imply, he said, would mean denial of AIDS-related services and information to those most in need.1 Mann’s idea that protecting human rights coincides with protecting public health in the matter of fighting HIV/AIDS had a strong appeal, at least on a rhetorical level, and continues to do so. Even in an institution such as the World Bank, not normally known for placing human rights at the center of its thinking, HIV/AIDS policy and project documents regularly invoke the importance of human rights protections in fighting the epidemic.2 In 1998, UNAIDS and the office of the UN High Commissioner on Human Rights jointly issued guidelines on human rights and HIV/AIDS, which set out legal and policy standards to address many of the concerns raised by Mann.3 Fighting stigma and discrimination was the theme of the UN’s global AIDS campaign in 2002 and 2003. In theory, everyone seems to be in favor of fighting stigma and discrimination related to AIDS as a central element of combating the epidemic. In practice it is hard to find real examples of such efforts. This gap between theory and practice was played out colorfully during the UNGASS on HIV/AIDS in June 2001. The special session resulted in a “declaration of commitment” that enjoined member states to enact and enforce legislation protecting the rights of people with HIV/AIDS and persons vulnerable to the disease and recognized that human rights protections drive an effective response to HIV/AIDS.4 But the reality of exactly who would benefit from these measures was too much for some countries, notably the United States. Early drafts of the UNGASS declaration included specific reference to sex workers, injection drug users, and men who have sex with men as persons particularly vulnerable to the disease and in need of special human rights protections. The United States and a number of Middle Eastern countries objected to the naming of those groups, and the best efforts of the European Union, Norway, Argentina, and Canada could not overcome that position.5 Adding short-term insult to long-term injury, many of these same countries tried unsuccessfully to block the scheduled participation of a representative of the International Gay and Lesbian Human Rights Commission from the UNGASS “round table” on human rights.6 Somewhere between the theory and the practice of human rights, some of the UNGASS delegations fell into a hole of intolerance. Five years later, a similar struggle over naming vulnerable groups involving virtually the same parties occurred over the declaration from the UNGASS in June 2006,7 demonstrating the persistence of the reluctance of some states to face up to the human rights reality of AIDS. This chapter attempts to show that behind the general rubric of “stigma and discrimination” lies a wide range of knotty human rights abuses that drive HIV/AIDS very directly but are neglected in AIDS programs. It explores this

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policy and program inaction and offers some suggestions for resolving the apparent policy paralysis on HIV/AIDS and human rights.

More than “Stigma and Discrimination” Beginning in 1997, the annual “epidemic updates” of UNAIDS began noting that in Africa, in contrast to other regions of the world, 50 percent or more of people living with HIV/AIDS were women and girls.8 Perhaps the highprofile documentation of this fact was required for there to be any serious consideration of gender-related human rights abuses in the catastrophic African AIDS epidemic. For whatever reason, it is only in recent years that subordination of women and girls, including sexual violence and coercion, has consistently been part of analyses of the AIDS epidemic in Africa.9 It has taken a long time for many analyses of the global AIDS problem to come to the simple reality that “ordinary” married women are at very high risk of HIV to the degree that men face no social disapproval from having sex outside marriage and women face violence and abuse if they demand condom use or refuse sex. Domestic abuse is very rarely understood as a risk factor for HIV.10 Women are constrained to remain in unsafe long-term unions because inequitable divorce laws ensure their economic dependence on their husbands. Millions of young widows in Africa, many of them infected with HIV by their husbands, face rejection and appropriation of their homes by their husbands’ families.11 The subordination of women and girls and their lack of any form of political power, massively lethal in the age of HIV/AIDS, is an atrocious form of “stigma and discrimination” associated with HIV/AIDS. Gender-related abuses that fan the flames of HIV/AIDS in Africa are an example par excellence of policy inaction. In some cases, politicians doing nothing about gender inequality can see themselves as having the law on their side, since discriminatory property, inheritance, and divorce laws abound in Africa. In other cases, where the law may be adequate—as with rape laws in many countries (with the exception of marital rape, which is rarely forbidden by law)—nonenforcement of the law or abusive treatment of women and girls who make formal complaints of abuse negates the value of legal protection.12 In many countries, customary law and practice that disempower women are allowed to trump statutory, often constitutional, nondiscrimination provisions. In the more than ten years in which I worked in central and eastern Africa, it was easy enough to find men in power who attributed all of the problems of women to “our culture” and thus resigned themselves to the inevitability of inequities. It remains difficult to find leaders in Africa and many other regions who put a high priority on the necessary, if insufficient, action of fixing the legal and policy framework to protect women’s human rights or at least take the first steps toward that end.

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The term stigma and discrimination somehow seems too mild to describe the horrifying array of human rights abuses faced by children whose parents are dying or have died of AIDS. For them, the stigma and ostracism associated with AIDS combine dangerously with the vulnerability of children who lack parental care. Around the world, children affected by AIDS are denied their right to an education, abandoned or abused by relatives, forced to live on the streets where they face police violence and other abuse, obliged to take on hazardous labor (including, too often, prostitution), susceptible to being trafficked, highly vulnerable to sexual abuse, and often denied their inheritance rights.13 Very few countries have appropriate legal and judicial mechanisms for them (or for women widowed by AIDS) to defend their property and inheritance rights.14 Human Rights Watch has documented numerous shocking cases of sexual abuse of girls orphaned by AIDS, including at the hands of their guardians.15 In some cases, girls reported that their “guardians” felt they could demand anything of the girls, since their parents had died of AIDS and no one else would be likely to take them in. Stigma does not come in many more heinous forms than this. It is not surprising from an epidemiologic perspective that in the region with the fastest-growing AIDS epidemics, Eastern Europe and the former Soviet Union, the spread of AIDS is fueled by injection drug use. It remains little recognized at policy levels in that region, however, that human rights violations against injection drug users dramatically undermine the fight against HIV/AIDS. In Kazakhstan, Human Rights Watch documented abuses of injection drug users that included police harassment, abuse in detention constituting torture, discrimination, and lack of due process in the criminal justice system, all of which contributed to the demonization of users and their inability to gain access to sterile syringes, a key to containing the country’s fast-growing epidemic.16 The United Nations drug control treaties of 1961, 1971, and 1988, two of which predate the identification of the human immunodeficiency virus, gravely compromise AIDS programs by encouraging countries in the former Soviet bloc and beyond to adopt repressive antidrug strategies based on reducing demand for drugs without regard to the rights of users.17 It is shocking that a few countries, notably Russia, understand the UN conventions as authorization of criminalization of methadone.18 These concerns are not limited to the former Soviet Union. In 2003, Thailand’s war on drugs attracted modest international attention as more than 2,000 alleged drug dealers were killed in government crackdowns.19 Human Rights Watch documented atrocious mistreatment of injection drug users in China, where forced labor and “social re-education” are the inhumane response of the state to the disease of drug addiction in the midst of an AIDS epidemic shrouded in secrecy.20 In Bangladesh, where an AIDS epidemic is emerging next door to the already raging ones in India and Southeast Asia, the government is similarly looking the other way while police abuse of drug

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users impedes access to HIV prevention services.21 Even in Canada, a country that has historically done much to resist the repressions of the “war on drugs” of its neighbor to the south, police abuse of drug users in an impoverished neighborhood of Vancouver has been frequently reported and cited as a barrier to containing a serious AIDS epidemic.22 Gay and bisexual men, as well as men who have sex with men but do not identify themselves as gay or bisexual, are subject to heinous human rights abuse in many parts of the world, directly undermining HIV prevention and AIDS care for these persons. In several states of India, Human Rights Watch documented police harassment, in many cases violent, against men who had sex with men and worked as AIDS educators among their peers as well as among men who had sex with men more generally.23 Section 377 of the Indian Penal Code, which outlaws “unnatural offenses,” was used by police to justify much of the abuse that Human Rights Watch recorded. Gays and lesbians have been vilified by heads of state and other political figures in southern Africa and have faced acute discrimination and ostracism, a factor much neglected in analyses of HIV/AIDS in the region.24 Ugandan president Yoweli Museveni, who has been lauded worldwide for his leadership in his country’s struggle against AIDS, reportedly ordered that all homosexuals in Uganda be arrested for “abominable acts.”25 In Egypt, the government’s violent crackdown against gay men since 2001 has been carried out in the name of removing the threat of “sexual perverts” to the nation’s moral and cultural purity.26 Abuse of sexual minorities is linked in some countries to the influence of religious conservatives on governments. In India, for example, Shiv Sena, a powerful ultrarightist Hindu nationalist group, reportedly organized attacks on cinemas showing a film with lesbian characters, decrying the film as an affront to Hindu and Indian values.27 The influence of religious conservatives on the state is perhaps nowhere more powerfully exemplified than in the United States. In response to President George W. Bush’s call for a major initiative to assist HIV/AIDS programs in Africa and the Caribbean, the US Congress in June 2003 passed an act requiring that 33 percent of the HIV prevention moneys of this initiative go to support “abstinence only until marriage” programs.28 “Abstinence-only” approaches have been heavily promoted by the Bush administration in the United States and abroad at the behest of Bush’s conservative Christian political base. There is broad consensus among experts that teaching abstinence should be one tool among many in HIV prevention and education programs. The problem with the version of “abstinence-only” promoted by the Bush administration is that it often includes lethal lies about condoms and sex education, suggesting they are ineffective tools for HIV prevention.29 In addition, abstinence-only programs in the United States are inherently discriminatory to gay, lesbian, bisexual, and transgender persons, as they promote the idea that heterosexual marriage is the only legitimate context for sex.30 These programs placate a conservative

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religious base at the cost of violating the right of people to information that helps protect them from a deadly disease. The human rights abuses described above are largely those that increase people’s risk of HIV transmission. More than twenty years into the global epidemic, people already living with HIV/AIDS also continue to face a stunning array of human rights abuses, in many cases underwritten by discriminatory laws. In many parts of the world, people with AIDS are effectively denied the right to marry, denied entry to universities, quarantined in prison and other institutions, and denied housing and jobs. They are refused basic health care, because of their HIV status, by health professionals who should know better, and they are abused by police and other agents of the state. They are denied entry to many countries by restrictive policies that have no foundation in public health. Most of all, the vast majority of persons living with HIV/AIDS cannot get antiretroviral treatment for their illness or even treatment for opportunistic infections. Access to treatment, on which the global AIDS movement rightly keeps its focus, is both a matter of rights in itself and the key to resolving many other human rights problems related to HIV/AIDS. It is an obvious yet often overlooked reality that antiretroviral treatment reduces stigma and discrimination faced by persons with AIDS by reducing the most debilitating and overt symptoms of the disease. Improving treatment access among parents living with AIDS is arguably the single most important measure that could be taken to reduce the horrible human rights abuses that their children may face when deprived of parental care. Treatment is a necessary condition for enabling people living with the disease to live with dignity and to assert their rights and those of people at risk.

Factors That Impede a Rights-Centered Policy Response The abuses described above are largely the shameful product of deep-seated social animosity and of laws and politics that embody injustice. Many analysts have noted, not always admiringly, the importance of the gay rights movement in the United States in shaping AIDS policies protective of the rights of people affected by AIDS, notably in such areas as the voluntary and confidential nature of HIV testing.31 They criticize “AIDS exceptionalism”—the focus on human rights concerns that led to approaches to AIDS that are allegedly exceptional compared to the management of other infectious diseases. Thus it is noted, for example, that although testing is voluntary and the results confidential for HIV, this is often not the case for syphilis or gonorrhea. The US experience in the view of these critics is seen as a case where lobbying for human rights of gay men affected by the disease was, in a sense, too effective. But the vast majority of abuses that are driving HIV/AIDS in the world target people

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who, for various reasons, have not been able to benefit from the human rights protections that “exceptionalism” critics decry. This section notes a number of factors that keep human rights protections from being an object of real policy action and resource allocation in AIDS programs. As a matter of policy, HIV/AIDS is, first, too often shrouded in denial. The slow onset of AIDS allows political leaders, especially at relatively early stages of national epidemics, to wallow in denial, much abetted by the cowardice that inspires politicians to keep their political distance from sex workers, drug users, and other marginalized persons. In addition to outright claims that AIDS does not exist within their borders, other forms of political denial that have contributed to neglect of AIDS and related human rights abuses are grossly understating the extent of HIV/AIDS (as notably in India, China, and the former Soviet Union) or denying that high-risk groups exist or are at risk (again, as in India and China and many other countries).32 Africa’s catastrophic HIV/ AIDS epidemic thrived in the period up to the late 1990s when many highlevel politicians refused to recognize the problem within their borders.33 As the stranglehold of AIDS on Africa tightened, it was of course not only African leaders who were in denial. Donor nations found it easy to be dismissive to a point that some have characterized as racism. As Peter Piot, the executive director of UNAIDS, said, commenting on global inaction on AIDS in Africa, “if this would have happened in the Balkans, or in Eastern Europe, or in Mexico, with white people, the reaction would have been different.”34 The politics of racism that fiddled while Africa burned manifests itself in another insidious way. Based on my experience of discussing human rights concerns related to HIV/AIDS with policymakers in numerous countries in Asia and the Americas, I conclude it is very rare to find a political leader outside of Africa who readily embraces the idea that there are lessons to be learned from Africa’s HIV/AIDS experience. This may mean that south Asia, for example, is sadly doomed to the colossal destruction of an epidemic that, like Africa’s, thrives on the subordination of women and girls.35 AIDS policy is, second, too often weighed down by reactions that are morally judgmental and that thrive with the apparently growing political influence of religious conservatives of all kinds. This is what abstinence-only programs are all about, whether with respect to sex education or narcotic drug use. The political power of religious extremists around the world has brought scientifically discredited abstinence approaches to the front of the policy agenda, and it has also tended to harden support for sodomy laws, galvanize support for cruelly repressive drug laws, and help to keep women and girls in subordinate roles. The flourishing of religious conservatism in the halls of power of the world’s political giant in Washington bodes ill for HIV/AIDS policies that are based on protection of rights rather than on preaching about abstinence. Superpower relations have clearly also shaped AIDS policy with human rights implications. Even aside from the focus on abstinence-only approaches

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already noted, the AIDS policies of the United States have belied President George W. Bush’s claim of his administration as the global leader in the struggle against HIV/AIDS. Under the bright light of the State of the Union address in January 2003, Bush lauded the development of $300-a-year generic antiretroviral combinations. But at that moment, the US Trade Representative was busy blocking consensus around a World Trade Organization agreement that was the best hope for generic drug access for many poor countries.36 The US Agency for International Development has long professed a focus on women in its support for AIDS programs in low-income countries, and Bush in his July 2003 tour of Africa reiterated the same priority. But the reinstitution by Bush’s administration of the Reagan-era “gag rule” on abortion and the cutting of $34 million in US support for the UN Population Fund compromise women’s health programs around the globe.37 As if this were not enough, US-based scientists have found that federal money is unlikely to be available under Bush for research on the problems of sex workers or men who have sex with men.38 And on the virtually universal demonization of drug users in the law and in society, one cannot help but see the heavy influence of the policies of the US “war on drugs.” The United States continues to criminalize drug addiction rather than treating it as the medical disorder that it is and in the process greatly limits access to syringe-exchange programs, opiate substitution therapy, and other proven HIV prevention measures that are a central part of policies in, for example, much of Europe, Canada, and Australia.39

What Should Be Done? The abuses described above are entrenched and numerous, and they are shored up by strong political and economic forces, but there are many clear and feasible remedies. No government should be allowed to be off the hook, whether in hand-waving resignation to intransigent “culture” as the root of subordination of women, in justifying abuses of injection drug users’ rights because they are “criminals,” in rewriting the science of public health in false justifications of “abstinence-only” approaches, or in any other way. Governments should be helped to identify basic legal and policy measures that will afford protection to women and children affected by AIDS, especially in the matter of property and inheritance rights and protection from sexual abuse and violence. Civil rights protections and harm-reduction services for injecting drug users, including those in prison, should be a high priority. Realization of the right of all persons to basic information about HIV transmission and access to condoms must be central to prevention programs.40 Civil society actors in many countries have been at the forefront in struggles to center AIDS policy in human rights norms, but they cannot win this fight alone. For good or ill, donor countries also retain enormous influence

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over AIDS programs and policies in affected countries. For information and education programs, in the early years in Africa, for example, donor influence was at times important in establishing activities in spite of political denial or resistance from local authorities. Donor influence is obviously a mixed blessing, as the priorities of the George W. Bush administration illustrate. In financial terms, donor support for HIV/AIDS programs until the early years of the new century was very feeble in general41 and especially so for related human rights interventions. The Global Fund to Fight AIDS, Tuberculosis, and Malaria as of early 2006 had granted more than $5.4 billion to AIDS programs around the world in its first five rounds of funding, representing a considerable jump in donor support from earlier trends.42 But since the Global Fund’s criteria for judging project proposals is so lacking in human rights elements, it is not surprising that little of this funding can be traced to interventions to reduce human rights abuses linked to AIDS. This is also the case for the more than $1.5 billion in grants, loans, and credits that the World Bank mobilized for AIDS programs from 1998 to 2003.43 More than other aspects of AIDS programming, curbing human rights violations is likely to be an unpopular part of national AIDS programs and thus an area where donor support may be particularly crucial. This is true not only in financial terms but also in the high-level advocacy that donor countries are well placed to do. For example, there is at this writing a petition before the Delhi High Court to repeal the sodomy law in the Indian Penal Code that, as noted above, undermines the national AIDS program, a program largely underwritten by the World Bank and other donors. In September 2006, Nobel Prize–winning economist Amartya Sen and internationally acclaimed author Vikram Seth joined a number of other prominent Indians in advocating for the repeal of the sodomy prohibition.44 The World Bank could have a tremendous impact if it spoke out against such laws in India and elsewhere. Donors other than the United States should be shouting about the importance of not undermining condoms and sex education to placate religious extremists in the United States or anywhere else. The profound impact that the Sorosfunded Open Society Institute has had in providing services to injection drug users in the former Soviet Union and opening up discussions on drug policy reform in that region is a good example of donor conduct that can spur a turnaround in repression and human rights abuse related to AIDS. The various institutions of the United Nations system, for which human rights is a key founding principle, should do more. As noted above, three United Nations treaties shore up repressive narcotics control policies. The human rights bodies of the United Nations and the member organizations of UNAIDS should be up in arms about this, and yet there is hardly a peep. United Nations agencies, including those that are “co-sponsors” of UNAIDS, seem to be rather muted on the essential matter of the rights of gays, lesbians, bisexuals, and transgender persons. Peter Piot addressed the General Assembly

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twice at the 2006 UNGASS and chose not to urge member states to name vulnerable populations or, for example, to urge support for comprehensive sex education in the face of continued attacks from conservative states.45 Most of all, the various UN agencies through their “programs of cooperation” with governments at the national level need to become a voice for the integration of human rights protection and promotion in HIV/AIDS programs as well as more broadly.

Conclusion Governments have made commitments not only to protect their citizens from the abuses described above but also to facilitate the right to health, articulated in international treaties as the right to “the highest attainable standard of health.”46 In spite of widespread ratification of treaties guaranteeing this right and a significant number of judicial tests of the right to health around the world,47 relatively few countries have national law or policies even remotely reflecting such a commitment. It is cruelly ironic that one of the strongest guarantees of the right to health in national law is found in the constitution of the Republic of South Africa,48 a country whose sins of omission and commission on HIV/AIDS policy are a lethal disgrace. The countries of the former Soviet Union, which were the guardians of health rights and other economic and social rights in the formulation of the foundational human rights instruments of the UN system, have seen astonishingly rapid deterioration of their health systems since 1989.49 The privatization of government health services worldwide provides unfriendly ground for the development of rightto-health commitments of states. HIV/AIDS has visited its destruction on the world at a time when relying on a right-to-health track record or constituency is a weak defense. In a widely cited Lancet article that appeared at the time of the Barcelona AIDS conference in July 2002, Kevin De Cock, then of the US Centers for Disease Control and since early 2006 director of HIV/AIDS for WHO, and his colleagues made an appeal for getting human rights out of the AIDS business. As they put it, “emphasis on human rights in HIV/AIDS has reduced the importance of public health and social justice, which offer a framework for prevention efforts in Africa that might be more relevant to people’s daily lives and more likely to be effective.”50 This argument is again a response to “AIDS exceptionalism,” against which De Cock has argued for some years.51 De Cock has been a prominent advocate for wider “routine” HIV testing of the kind in which pregnant women, for instance, would be tested unless they objected and without the benefit of counseling, as opposed to voluntary testing that would be initiated by the woman and preceded by counseling and

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informed consent. The call to make HIV testing a default for prenatal care facilities in Africa deserves a wide and deep debate. It is wrong, however, to equate “human rights in HIV/AIDS” only with protection from nonvoluntary testing, and it is very unhelpful to pit “human rights” against “social justice.” It is a matter of both social justice and human rights that so many women and girls are HIV positive because of a lack of sexual autonomy resulting from a lack of power, because of having to trade sex for survival, or because of sexual violence. It is a matter of concern that so many of the women now receiving nevirapine or AZT in programs designed to reduce HIV transmission to newborns—those whom these authors would like to test by default—face stigma and discrimination in their villages and towns when they return from the maternity hospital with a baby whom they are instructed not to breastfeed. In places where breastfeeding is the norm, not breastfeeding “outs” these women as HIV positive. And it is obviously women in Africa more than men who face the worst of society’s violence and abuse when their HIV status is known.52 It is the wrong moment to downplay human rights–based approaches to HIV/AIDS. The AIDS crisis in Africa and the emerging catastrophes in other parts of the world are unlikely to be turned around until state-sponsored harassment and persecution of persons with AIDS and those at risk are addressed, along with subordination based on gender, repression of information, and discrimination related to HIV/AIDS. The challenge is amplified by the behavior of a global superpower that snubs multilateralism, including many global human rights initiatives, and has shown little inclination in its AIDS assistance programs at home and abroad to recognize human rights concerns as central to the epidemic. Critics of AIDS exceptionalism argue for the “normalization” of HIV/AIDS with respect to other infectious diseases. No such normalization will be possible without attention to a wide range of human rights abuses that stoke the fires of AIDS and distinguish it from illnesses that do not cause people to be beaten, harassed, and otherwise abused. As long as people living with, at risk of, and otherwise affected by AIDS are abused and persecuted, this most destructive of epidemics will have the upper hand.

Notes 1. Mann’s ideas are articulated in numerous articles up to the time of his death in a plane crash in 1998. See, for example, Jonathan M. Mann, “Human Rights and AIDS: The Future of the Pandemic,” in Health and Human Rights: A Reader, ed. Jonathan M. Mann et al. (New York: Routledge, 1999). 2. The World Bank’s 2005 statement of its approach to AIDS lending and programming is heavy on attention to “marginalized” persons and those suffering from stigma and other human rights violations. See World Bank, The World Bank’s Global

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HIV/AIDS Program of Action (Washington, DC: World Bank, 2005). Human rights arguments were central to the rationale for World Bank–funded projects underwriting activities targeting vulnerable groups as, for example, in one of the biggest such projects in India. See World Bank, “Project Appraisal Document on a Proposed Credit in the Amount of SCR140.82 Million to India for a Second National HIV/AIDS Control Project,” report no. 18918-IN, 1999. 3. Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Program on HIV/AIDS, HIV/AIDS and Human Rights—International Guidelines, UN doc. HR/PUB/98/1 (from the second international consultation on HIV/AIDS and human rights, September 23–25, 1996, Geneva) (Geneva, Switzerland: Office of the High Commissioner for Human Rights, 1998). 4. United Nations General Assembly, “Declaration of Commitment on HIV/ AIDS: Global Crisis—Global Action,” G.A. resolution A/Res/S-26/2, 2001. Available at http://www.un.org/ga/aids/docs/aress262.pdf. 5. Christopher S. Wren, “Struggling to Carve Out Common Ground, U.N. Tackles AIDS,” New York Times, June 24, 2001. David Fraser, “Fight About the Soul: UN Allows Gay Rights Group a Voice,” Bay Area Reporter, June 29, 2001. 6. Fraser, “Fight About the Soul.” 7. The political declaration from the 2006 UNGASS on HIV/AIDS, featuring no explicit naming of vulnerable populations, is available at http://data.unaids.org/pub/ Report/2006/20060615_HLM_PoliticalDeclaration_ARES60262_en.pdf. 8. UNAIDS, AIDS Epidemic Update, (Geneva, Switzerland: United Nations, 1997). Available at http://www.unaids.org/publications/documents/epidemiology/surveillance/wad1997/report97.html. 9. UNIFEM has been outspoken on this subject in recent years; its first publication on women and AIDS appeared in 2000. See United Nations Fund for Women, Gender, HIV, and Human Rights: A Training Manual (New York: United Nations, 2000). Available at http://www.unifem.org/index.php?f_page_pid=73. Stephen Lewis, the UN special envoy for HIV/AIDS in Africa, has brought considerable international press attention to the subordination of women and girls as a driving force for HIV/ AIDS in Africa. See, for example, Stephen Lewis, “Remarks at U.N. Press Briefing,” January 8, 2003. Available at http://www. accessmed-msf.org/prod/publications .asp?scntid=29120031525338&contenttype=PARA&. An early and excellent treatment of gender issues in HIV/AIDS with some focus on Africa is Royal Tropical Institute and Southern Africa AIDS Information Dissemination Service, Facing the Challenges of HIV/AIDS and STDs: A Gender-Based Response (Amsterdam: Royal Tropical Institute, 1998). 10. See Suzanne Maman et al., “HIV-positive Women Report More Lifetime Partner Violence: Findings from a Voluntary Counseling and Testing Clinic in Dar es Salaam, Tanzania,” American Journal of Public Health 92, no. 8 (2002): 1331–1337. Also, Human Rights Watch, Just Die Quietly: Domestic Violence and Women’s Vulnerability to HIV in Uganda (New York: Human Rights Watch, 2003). (All Human Rights Watch reports cited in this chapter are available at www.hrw.org.) 11. Human Rights Watch, Double Standards: Women’s Property Rights Violations in Kenya (New York: Human Rights Watch, 2003). 12. Human Rights Watch, Just Die Quietly, 43–52; Human Rights Watch, Suffering in Silence: Human Rights Abuses and HIV Transmission Among Girls in Zambia (New York: Human Rights Watch, 2002), 68–73. 13. Human Rights Watch has documented human rights violations against children orphaned and otherwise affected by AIDS in several African countries and against other children abused in ways that put them at high risk of HIV. See Human Rights

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Watch, Suffering in Silence; Human Rights Watch, In the Shadow of Death: HIV/AIDS and Children’s Rights in Kenya (New York: Human Rights Watch, 2001); and Human Rights Watch, Borderline Slavery: Child Trafficking in Togo (New York: Human Rights Watch, 2003). 14. See, for example, Laelia Zoe Gilborn et al., Making a Difference for Children Affected by AIDS: Baseline Findings from Operations Research in Uganda (New York: Population Council, 2001), esp. 12–13. Available at http://www.popcouncil.org/ pdfs/horizons/orphansbsln.pdf. Also Human Rights Watch, In the Shadow of Death, 19–21. 15. See, for example, Human Rights Watch, Suffering in Silence, 25–30. 16. Human Rights Watch, Fanning the Flames: How Human Rights Abuses Are Fueling the AIDS Epidemic in Kazakhstan (New York: Human Rights Watch, 2003). 17. Kasia Malinowska-Sempruch, Jeff Hoover, and Anna Alexandrova. Unintended Consequences: Drug Policies Fuel the HIV Epidemic in Russia and Ukraine (New York: Open Society Institute, 2003). 18. Ibid., 5. Substitution therapy with methadone or buprenorphine has a long record of success in providing a noninjected alternative to injected heroin for drug users and is thus a central strategy for HIV prevention in many countries. 19. Aryeh Neier, “The World’s Other Tyrants Still at Work,” New York Times, April 7, 2003, op-ed page. Guy Dinmore and Amy Kazmin, “US Protests to Thailand over Drug War Killings,” Financial Times (London), May 8, 2003. 20. Human Rights Watch, Locked Doors: The Human Rights of People Living with AIDS in China (New York: Human Rights Watch, 2003). 21. Human Rights Watch, Ravaging the Vulnerable: Abuses Against Persons at High Risk of HIV Infection in Bangladesh (New York: Human Rights Watch, 2003), 44–46. 22. Frances Bula, “Vancouver Police Thwart Attempt to Help Addicts: Closing a Sidewalk Needle Exchange Shakes Coalition of Civic Agencies,” Vancouver Sun, June 6, 2002. Human Rights Watch, Abusing the User: Police Misconduct, Harm Reduction and HIV/AIDS in Vancouver (New York: Human Rights Watch, 2003). See also Will Small et al., “Impacts of Intensified Police Activity on Injection Drug Users: Evidence from an Ethnographic Investigation,” International Journal of Drug Policy 17 (2006): 85–95. 23. Human Rights Watch, Epidemic of Abuse: Police Harassment of HIV/AIDS Outreach Workers in India (New York: Human Rights Watch, 2002). 24. See International Gay and Lesbian Human Rights Commission and Human Rights Watch, More Than a Name: State-Sponsored Homophobia and Its Consequences in Southern Africa (New York: Human Rights Watch, 2003), esp. 3–4, 109–115. 25. “Ugandan President Orders Arrest of Gays,” Reuters, September 28, 1999. Available at http://www.ilga.org/Information/legal_survey/africa/uganda.htm. 26. Human Rights Watch, In a Time of Torture: The Assault on Justice in Egypt’s Crackdown on Homosexual Conduct (New York: Human Rights Watch, 2004). 27. “Film Star Slams Lesbian Movie Withdrawal,” BBC News, December 7, 1998. Available at http://news.bbc.co.uk/1/hi/world/south_asia/229320.stm. 28. Jim Abrams, “House Approves Major Global AIDS Bill,” Associated Press, May 1, 2003. United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act, HR 1298, 108th Congress, 2003. Available at http://thomas.loc.gov/cgi-bin/ query/z?c108:h.r.1298:. 29. Misinformation about condoms was documented by Human Rights Watch in a study of abstinence-only programs in the state of Texas. See Human Rights Watch,

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Ignorance Only: HIV/AIDS, Human Rights, and Federally Funded Abstinence-Only Programs in the United States (New York: Human Rights Watch, 2002). These findings were confirmed in a US House of Representatives report (prepared for Rep. Henry Waxman) alleging a wide range of cases of distortion of science in Bush administration programs. This report detailed the ways in which abstinence-only programs fly in the face of established science, including government-sponsored studies. US House of Representatives, 108th Congress, Committee on Government Reform, Minority Staff, Special Investigations Division, Politics and Science in the Bush Administration (Washington, DC: Government Printing Office, 2003), 4–6. 30. Human Rights Watch, Ignorance Only, 34–39. 31. See, for example, David J. Casarett and John D. Lantos, “Have We Treated AIDS Too Well? Rationing and the Future of AIDS Exceptionalism,” Annals of Internal Medicine 128 (1988): 756–759. Chandler Burr, “The AIDS Exception: Privacy vs. Public Health,” Atlantic Monthly 279, no. 6 (June 1997): 57–65. 32. A report of a research body affiliated with the US Central Intelligence Agency attracted much global attention in 2002 with the suggestion that the estimated numbers of persons living with AIDS and projections of the same in China, India, and the former Soviet Union were too low. See US National Intelligence Council, The Next Wave of HIV/AIDS: Nigeria, Ethiopia, Russia, India, China, ICA 2002-04D (Washington, DC: National Intelligence Council, 2002). Available at http://www.fas.org/irp/nic/ hiv-aids.html. The UN’s annual AIDS report in 2006 highlighted India’s estimated 5.7 million people living with HIV as the world’s highest national total. UNAIDS, 2006 Report on the Global AIDS Epidemic (Geneva, Switzerland: UNAIDS, 2006). See, for example, the Asia fact sheet from the report. Available at http://www.unaids.org/en/ HIV_data/2006GlobalReport/press-kit.asp. 33. At the time of the International Conference on AIDS and STDs in Africa (ICASA), held in Lusaka, Zambia, in September 1999, the regional office of UNICEF where I worked was collaborating with many colleagues across eastern and southern Africa to organize a high-level symposium for heads of state in the most affected countries of the region, which would have provided an opportunity for them to acknowledge publicly the magnitude of the AIDS problem in their countries. In the end, no heads of state came to ICASA. It was at about this time, however, that some previously silent heads of state began to feel the pressure to speak out. See, for example, Martin Dawes, “Moi: AIDS a National Disaster,” BBC News, November 26, 1999. Available at http://news.bbc.co.uk/1/hi/world/africa/538071.stm. 34. Piot quoted in Michael Kirby, “Thoughts in Dark Times of a World Made New,” Journal of Law, Medicine, and Ethics 30, no. 4 (2002): 493. See also Barton Gellman, “Death Watch: The Global Response to AIDS in Africa; World Shunned Signs of the Coming Plague,” Washington Post, July 5, 2000. Gellman reported that an internal World Bank study in 1992 had suggested that the population decline that would be caused by AIDS in Africa might benefit the continent economically. 35. When I spoke to the then-director of India’s National AIDS Control Office, Dr. J.V.R. Prasada Rao, in April 2002, for example, he could not have been more dismissive of any comparison between India and Africa. (In 2006, Dr. Rao became the regional director of UNAIDS for Asia.) 36. “A Global Medicine Deal,” New York Times, January 6, 2003, editorial. 37. Planned Parenthood Federation of America, Inc. [PPFA], Report: The Mexico City Policy and the Global Gag Rule (New York: PPFA, 2000). Available at http:// www.plannedparenthood.org/library/facts/030416_globalgag.html. 38. Erica Goode, “Certain Words Can Trip Up AIDS Grants, Scientists Say,” New York Times, April 18, 2003.

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39. Human Rights Watch, Injecting Reason: Human Rights and HIV Prevention for Injection Drug Users—California: A Case Study (New York: Human Rights Watch, 2003). 40. All of Human Rights Watch’s reports of AIDS-related human rights abuses cited in this chapter include recommendations for concrete legal, policy, and program actions to address abuses. 41. Amir Attaran and Jeffrey Sachs, “Defining and Refining International Donor Support for Combating the AIDS Pandemic,” Lancet 357 (January 6, 2001): 57–61. 42. The Global Fund Web site keeps a running account of the fund’s commitments. Available at www.theglobalfund.org/. 43. World Bank, “World Bank Intensifies Action Against AIDS.” Available at http://www1.worldbank.org/hiv_aids/overview.asp. 44. Amelia Gentleman, “India’s Anti-Gay Law Faces Challenges,” International Herald Tribune, September 16, 2006, 1. 45. Piot’s first address is available at http://www.un.org/webcast/ga/aids/2006/ statements/unaids-piot-en.pdf. I was present at the 2006 UNGASS as a member of the delegation of Canada and witnessed both addresses. 46. United Nations General Assembly, International Covenant on Economic, Social, and Cultural Rights, GA res. 2200A, XXI, 21 U.N. GAOR Supp. No. 16 at 49, U.N. Doc. A/6316. Entered into force January 3, 1976, article 12. 47. The International Network for Economic, Social, and Cultural Rights maintains a Web site called ESCR-Net that includes an updated record of judicial decisions on the right to health from around the world: http://www. escr-net.org/Eng General/Case_law.asp. 48. Republic of South Africa, Constitution of the Republic of South Africa (as adopted on May 8, 1996, and amended on October 11, 1996, by the Constitutional Assembly), Chapter 2 (Bill of Rights), section 27(1) and 27(2). Available at http:// www.gov.za/constitution/1996/96cons2.htm. 49. See, for example, Laurie Garrett, Betrayal of Trust (New York: Hyperion, 2001), 122–267. 50. Kevin De Cock, Dorothy Mbori-Ngacha, and Elizabeth Marum, “Shadow on the Continent: Public Health and HIV/AIDS in Africa in the 21st Century,” Lancet 360 (July 6, 2002): 68. The same authors later made another argument in favor of routine HIV testing of pregnant women in Africa, but this time said this strategy could be carried out without violating human rights principles. See Kevin De Cock, Elizabeth Marum, and Dorothy Mbori-Ngacha, “A Serostatus-Based Approach to HIV/AIDS Prevention and Care in Africa,” Lancet 362 (November 29, 2003): 1847–1849. 51. Kevin M. De Cock, “From Exceptionalism to Normalisation: A Reappraisal of Attitudes and Practice Around HIV Testing,” British Medical Journal 316 (January 24, 1988): 290–293. 52. The case of Gugu Dlamini, a South Africa woman beaten to death in 1998 after she revealed publicly that she was HIV positive, is well known, but it represents an enormous web of violence faced by women infected and affected by AIDS in Africa. See, for example, Human Rights Watch, Just Die Quietly, esp. 22–31. Also Maman et al., “HIV-positive Women,” n11.

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13 International Relations and the Global Ethics of HIV/AIDS Paul G. Harris and Patricia D. Siplon

The world is in the midst of what is likely to become the greatest health crisis since the advent of modern medical technologies and very likely the greatest plague in human history. Millions of people—particularly people in many of the world’s poor countries—are infected with HIV. The vast majority of these people have gone and will go without modern medical intervention or substantial treatment, leading rapidly to AIDS and frequently to painful death. The extent of this problem presents profound moral and ethical questions for the world’s wealthy people and countries, for it is they who are most able to assist the poor in managing and reversing this human tragedy. Over the last century or more, there has been a gradual shift in global attitudes toward reducing suffering among the world’s poor. Governments have come to regard many forms of international assistance as the right thing to do (if not a legal obligation). For example, when famine strikes, it is generally recognized by governments and citizens of the developed countries that they ought to respond because they have a surplus of food and the means to deliver it to those who are starving. Doing so is relatively easy and painless for those providing aid, yet it brings tremendous benefit to those in need. The degree to which assistance is provided varies, of course, but few would argue that the starving should be ignored. Similar feelings of duty in the developed world arise in other issue areas, for example, with regard to natural disasters and adverse environmental changes, and governments of the rich countries (and indeed many of their private citizens and nongovernmental groups) respond accordingly with increasing frequency, robustness, and speed. HIV/AIDS presents the world with such a problem requiring assistance from the world’s wealthy. Nevertheless, developed countries have been very slow in responding to the international dimensions of the HIV/AIDS problem. For far too long they focused on the relatively few people within their own borders at risk for HIV 263

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or suffering from AIDS, seemingly uninterested in confronting the greater challenges posed by the global spread of HIV. Reactions have started to change—the United States, for example, has reversed its long-standing apathy with the creation of a five-year multi-billion-dollar initiative aimed at treatment and prevention—but these changes mask the fact that not nearly enough new and additional funds or policies have been implemented to assist poor countries in coping with and reversing the HIV/AIDS epidemic. UNAIDS, for instance, projected that even in the best-case scenario, there was at least a 4-billion-dollar funding gap between global AIDS need and resources for 2005 and that this will double by 2008.1 Developed countries also continue to participate in activities that exacerbate the crisis and associated human suffering—for example, by requiring that AIDS-related funding be spent on abstinence programs instead of on other activities shown to be more effective in combating the problem. That is, although accepting the desirability of responding to other crises that are insurmountable by countries experiencing them, the developed world has done less than it should to help the poor countries address the problem of HIV/AIDS. This chapter looks more closely at the global HIV/AIDS problem, especially in the developing world. We discuss what can be done and what has been done to stop the spread of HIV and reduce the suffering from AIDS. We identify some reasons why more has not been done, and we suggest some reasons why it ought to be. Explicit in this discussion is the clear need and moral requirement for assistance and action from the world’s wealthy countries to address the HIV/AIDS epidemic through the empowerment of the weakest people and countries affected by this plague. Indeed, the developed world should view assisting the world’s poor in dealing with this problem as a moral obligation; that is, at least in this context, the world’s poor countries arguably have a right to assistance from the wealthy countries of the world. We summarize the historical evolution of developed countries’ attitudes and actions toward aiding poor countries in several issue areas. We acknowledge that the willingness to provide aid has increased over time, but we also argue that it has not gone nearly far enough and we suggest that for reasons of morality (among others) this trend ought to be accelerated in the context of HIV/AIDS.

HIV/AIDS: A Problem Demanding a Global Response It is hard to overstate the dimensions of the problem of HIV/AIDS in the developing world, particularly in sub-Saharan Africa. Worldwide, AIDS has already killed tens of millions of people and left more than 14 million children orphaned, according to UNAIDS.2 Approximately 40 million people were living with HIV/AIDS in 2004, with 5 million people newly infected with HIV in 2004 alone. 3

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In looking at the demographics of HIV infection, much emphasis has been placed on geography. Sub-Saharan Africa is a case in point. Although it has only about 10 percent of the world’s population, more than 60 percent of the world’s HIV-positive adults and 80 percent of the world’s HIV-positive children live there, and the adult prevalence rate of HIV is almost seven times that of the rest of the world (7.4 percent compared to the 1.1 percent average worldwide).4 And the situation is not improving. Although some areas are showing modest declines, for example in parts of east Africa, the worst-hit region of the world, southern Africa continues to suffer from double-digit prevalence rates in all but one country (Angola). Other developing regions and the former communist countries of Europe also have huge numbers of infected individuals and rapidly growing epidemics. In fact, owing largely to China’s exploding epidemic, the number of people living with HIV increased almost 50 percent between 2002 and 2004, and there was a 40 percent rise in the HIV-positive populations of Eastern Europe and central Asia in the same period.5 Although geography is a tremendously important way of viewing the world’s AIDS pandemic, an equally important, and complementary, vantage point is provided through the lens of poverty. Ninety-five percent of the world’s HIV-positive people live in low-income countries.6 In fact, poverty—and by implication the powerlessness associated with it—is currently the single most important factor in determining who among the world’s people are most vulnerable to HIV.7 It is therefore not surprising that Africa, with its average gross domestic product (GDP) of $560 per person, compared to Asia’s meager $730 and Latin America’s $4,230, has suffered the most (although these numbers add urgency to the warnings that Asia is seriously at risk as well).8 The combination of poverty and HIV creates a terrible downward spiral in poor countries whereby poverty provides many of the conditions that facilitate the spread of HIV. Poverty leads to poor health conditions generally, including the lack of treatment of conditions, such as sexually transmitted diseases, that make individuals more susceptible to HIV infection. Poverty also creates exploitative working conditions that have been shown to foster the spread of HIV infection. Lack of alternative economic opportunities and poverty force women into formal and informal prostitution. The few options open to poor men include trucking and mining—both occupations that have been documented as facilitating the spread of HIV.9 As illness and death due to HIV infection spread through communities, poverty creates a situation where every aspect of the disease—from treatment of the ill to the creation of orphans through the death of parents and guardians to the challenges of implementing prevention programs—creates strains on already overtaxed social systems. When people become sick, families are forced to spend precious resources on any treatment options they can find. Sickness in adult family members means they cannot earn an income and cannot grow or provide food. The eventual death of adults leaves children, many of whom have

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already been pulled from school because of the inability to pay school fees, with no one to care for them. They, and adult women survivors, may be forced into sex work to provide for themselves and their families, thereby multiplying not only their own suffering but also the transmission of HIV.10 The devastation experienced within and among families is mirrored in the communities within which they live. In poor countries that already suffer from a lack of formally trained professionals in education, health care, the military, and the government bureaucracy, AIDS has been devastating. For instance, it has been estimated that a country with an HIV prevalence rate of 30 percent would lose between 3 and 7 percent of its health-care workers annually to AIDS.11 The ranks of teachers are similarly being depleted. In Zambia, in one year (1998) 1,300 teachers died—two-thirds of the number trained annually.12 UNAIDS director Peter Piot summed up the impact: “HIV does to society what it does to the human body. It undermines the very institutions that are meant to defend society—its doctors, its teachers.”13 The future of these societies is seriously at issue. Thinking about the explosive growth in the orphan population, for example, should give the world cause for alarm. There are currently estimated to be at least 14 million children orphaned by AIDS in sub-Saharan Africa, and absent significant intervention, that number is expected to grow to 40 million by 2010.14 Most of these children will reach adulthood without formal education, parental role modeling, or significant skills development. Lacking these abilities and attributes, they will be less able to take on the work and family responsibilities necessary for national stability. This is only one of many ways in which AIDS is undermining the economies and civil societies of African countries. What is more, in a forum sponsored by the Institute for Peace, international researchers and intelligence experts warned of dire consequences, including a decrease in the GDP of sub-Saharan countries of as much as 20 percent over the next two decades, and the potential for extreme political instability and ethnic tension. Equally worrying, they also suggested that some of these problems could occur in India as well.15 As economies plunge and governments fail, the developed world will be forced to expend resources on peacekeeping and stabilization efforts that could have been staved off with far fewer resources, and certainly much less human suffering, by providing assistance for the root problem of AIDS. As Chapter 2 points out, these tragic but preventable consequences will have devastating impacts on the already-severe power differentials between and among individuals, societies, and states. Individually, the burdens will fall disproportionately on the most powerless members of society, women and children of AIDS-impacted families; at the societal level, disempowered groups will be further removed from the resources necessary for their development, including income, education, time, and access to support from outside groups; and weak nations will move further into a state of dependency on

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powerful ones that will necessarily provide whatever resources can be wrested to make up the deficits experienced by economies, governments, and armies. Currently, a further aggravating factor to the poverty of the world’s poorer countries is the staggering external debt they owe to wealthier countries and international financial institutions. Again, sub-Saharan Africa serves as a prominent, though by no means isolated, example. According to figures released from the Jubilee Debt Campaign in 2004, sub-Saharan African countries owe approximately $300 billion to their creditors. Foreign aid cannot keep pace with the debt. For every dollar received in grant aid, low-income countries pay $2.30 in debt payments. And the opportunity cost of this debt servicing is equally great. Many sub-Saharan African countries spend more on debt servicing than on health care or education.16 The relationship between the developed world and the devastating poverty and circumstances aggravating AIDS in the developing world is of course complex. At the very least, the developed world has stood in the way of the developing world’s efforts to solve AIDS and other health-related problems in the most cost-effective ways possible. The developed world has, for example, taken positions that prioritize patent protections over public health in developing countries (sometimes even more strongly than prescribed by international treaties). Brazil, South Africa, and Thailand are among the countries that have been overtly pressured by the US government not to take measures to bolster their abilities to obtain or produce cheaper generic drugs or even, in the case of Thailand, to monitor drug prices.17 Other leading countries have also publicly and privately shown their support for stronger patent regimes, regardless of the devastating effect they may have for people unable to afford the prices set by the branded (as opposed to generic) pharmaceutical industry. In the case of South Africa, for example, while the United States was taking a more vocal position in opposing the 1997 amendment to the Medicines and Related Substances Control Act that would have made it easier to purchase affordable drugs, European countries were exerting pressure on behalf of the branded pharmaceutical industry.18 This prioritization of the patent rights of powerful pharmaceutical companies has moderated somewhat in very recent years, but the trend remains—as shown by the Bush administration’s resistance to spending US funds for generic drugs to treat HIV/AIDS in the developing world. These positions stand in stark contrast to others proposed by developing countries, humanitarian NGOs, and global networks around the world, who began in the very late 1990s to promote a variety of ways that medicines could be affordably accessed by the countries that need them most. Médecins sans Frantières, Oxfam, and Health GAP are among the most active NGOs to have campaigned for measures such as compulsory licensing and parallel importing, tiered pricing, global bulk purchase at the lowest world prices, and global pricing registries and outright reform of world intellectual property law as

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means of making medicines affordable. Although a full discussion of these practices is beyond the scope of this chapter, a few words of explanation are in order. Briefly stated, compulsory licensing allows a country to issue a license to a third party (for example, a generic manufacturer) to make a patented product and then pay a small royalty to the owner of the patent (for example, a branded pharmaceutical company). Parallel importing allows a country to buy drugs in another country that are being sold more cheaply there than domestically. Both are currently allowed within certain limitations by the WTO TRIPS agreement, although many developing countries have hesitated to exercise these options because of uncertainty about the law and pressures exerted on them by developed countries and the international pharmaceutical industry. Tiered pricing is a system in which differentiated prices are established based upon a country’s ability to pay and is currently used for many vaccines administered globally. Global bulk purchase allows an international agent, such as a UN agency, to use money from the Global Fund to Fight AIDS, Tuberculosis, and Malaria to purchase drugs in bulk from whatever producer offered them at the lowest bid. Finally, a global pricing registry offers a comparative database of manufacturer prices (which vary widely from country to country and from company to company) for the use of purchasers of essential medicines. All of these proposals have been strongly resisted by the international branded pharmaceutical industry, by the US government, and to a lesser degree, by other developed countries. At first, this resistance was overt, as numerous examples that occurred in the year 2001 illustrated. Rejecting the idea of a drug pricing database while attending the World Health Assembly, the head of the US delegation, Secretary of Health and Human Services Tommy Thompson, enraged AIDS activists who had attended as observers with the openness of his sympathies. In publicly addressing the International Federation of Pharmaceutical Manufacturers, he said, “I want you to understand I’m fighting your fight for you. The Brazilians, they want this database.”19 A month earlier US Speaker of the House Dennis Hastert had declined entreaties to endorse government-sponsored drug price reduction plans while visiting an AIDS orphanage in Kenya with the comment that “the drug companies I’ve talked to are doing all they can to bring down drug prices.”20 In June, the United States included Henry McKinnell, who serves as both the CEO of Pfizer and the chair of the Pharmaceutical Manufacturers and Manufacturers of America, on its official government delegation to the UNGASS on HIV and AIDS. During the UNGASS meeting, the United States actively lobbied against inclusion of language framing health care as a right and specific discussion of the strategies listed above for making AIDS treatment affordable. In exchanges leading up to and during the 2001 G8 Summit Meeting in Genoa, Italy, the United States also informed the European Union that it would oppose the EU’s tentative moves toward endorsing tiered pricing and a

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global database (arguably the least drastic of the proposals). On March 1 Chris Patten, the European Union’s external relations commissioner, wrote to US Secretary of State Colin Powell to propose these measures but was rebuffed with the argument that two-tiered pricing would create unnecessary regulation. That exchange was followed by a letter sent in late June by US Trade Representative Robert Zoellick to his counterpart on the European Commission, Pascal Lamy.21 The letter stated specific opposition to any international regulation of drug prices as well as to the creation of a price database, a position that the United States actively continued to push during the G8 Summit.22 Although there has been some public backpedaling from these overt actions, developed countries and particularly the United States have found more subtle ways of promoting their interests, such as objecting to the “safety” of generic medications not approved by the FDA (although prequalified by the World Health Organization) and having countries accept more stringent intellectual property standards in specific treaty negotiations, such as the recently passed CAFTA. In the face of such evidence, it is difficult to argue that the developed countries do not have some culpability for blocking the means of developing countries to buy affordable medications. Some would argue that the relationship goes deeper and that the world’s wealthy countries’ culpability goes even further. According to this line of argument, the neoliberal policies of the world’s wealthier countries are partially responsible for the problems of the world’s poorest countries. These policies, which place many developing countries in disadvantaged positions and thereby make it difficult for them to grow economically, include the purposeful retention of many exploitative patterns of colonial rule (“neocolonialism”); the liberalization of currency exchanges and financial markets that results in currency devaluations, market volatility, and uncontrollable movements of capital; and the imposition of frequently harmful structural adjustment programs that are disproportionately borne by the poorest in society.23 Together with the inequities inherent in economic globalization, some argue, these policies contribute to the inability of developing countries to solve their own economic and social problems—including AIDS. Despite this very difficult situation in which developing countries find themselves, there have been a number of promising developments. Brazil, Senegal, Thailand, and Uganda have been held up as international examples of countries that have successfully lowered or stabilized transmission rates. Yet it is important to remember that most of the budgets of developing countries are tiny compared to those of developed countries. Brazil is wealthier than many other developing countries but still had to initially work through loans from the World Bank to achieve its successes. The resources of most, if not all, countries facing AIDS problems that are more severe than Brazil’s are simply inadequate for the monumental task of successfully combating the AIDS epidemic. Even in Uganda, where infection rates have been significantly reduced, HIV

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infections still remain more than five times higher than worldwide average prevalence rates.24 Recent developments in Uganda also illustrate the potentially negative impact of continuing policy intervention by developed country governments, in this case the United States, which is contributing to a condom shortage in the country that threatens to undo previous prevention efforts.25 Political commitment on the part of developing countries is clearly a necessary but not sufficient condition for ending the AIDS pandemic in the developing world. Solving this crisis requires assistance from the world’s more affluent countries. In sum, the world—particularly the developing world—is facing an unprecedented health crisis in the forms of HIV and AIDS. This crisis is manifested by truly great human suffering, which is experienced most extensively by the world’s poor. The developed countries of the world have, through action and inaction, exacerbated this suffering. They have actively blocked efforts to bring affordable medicines to people in the developing countries infected with HIV and suffering from AIDS, and they have resisted, at least until very recently, most calls for them to be much more forthcoming with the financial assistance and international economic flexibility that is crucial for attacking the epidemic and its underlying causes.

The Developed World’s Slow Response to Global HIV/AIDS At first glance, it may seem as if the developed world is well on its way to finally shouldering its responsibilities in combating the global AIDS pandemic. Certainly in 2005, levels of funding, for both the UN-initiated Global Fund to Fight AIDS, Tuberculosis, and Malaria and the five-year multibillion-dollar PEPFAR program of the United States represented major leaps from the levels offered at the beginning of the millennium when President George W. Bush called the global AIDS crisis “almost beyond comprehension” and then pledged a mere $200 million to the Global Fund to deal with it.26 But in actuality these commitments still pale in comparison to both the global need and the capacity of developed countries to meaningfully deal with a problem that increases every day with nearly 15,000 new infections.27 And these countries continue to block (albeit by more subtle means) efforts by developing country governments and activists around the globe to provide affordable treatment options for people in low-income countries. Generally speaking, the dynamic of AIDS-related assistance from rich countries, and particularly the United States, has taken a course through four overlapping stages of policy development. First came a period of nonrecognition of the devastating impact of the AIDS pandemic—in essence, the denial of the need for a response through the denial of a problem in the first place. Sec-

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ond, there was a phase of attempting to shift responsibility to the developing countries themselves, through a set of proposals that would place heavier financial responsibilities on the global South and less on the global North. Third, there was a set of responses attempting to abrogate responsibility through various manifestations of an argument that the pandemic could be solved with aid from wealthy countries because of cultural barriers, lack of health-care infrastructure, and the enormous (albeit highly inflated) costs of antiretroviral medications. Fourth, developed countries acknowledged both the immensity of the problem and the fact that they must play a meaningful role in the solution but remained unwilling to commit to the resources and policies necessary to contain and ameliorate the pandemic. The United States was among those countries that, for years, denied the scale of the problem and the need for an international response. For example, officials of the Central Intelligence Agency (CIA) lobbied internally for three years, from 1987 to 1990, seeking permission to produce a report that was ultimately released in 1991. The classified document, entitled “The Global AIDS Disaster,” predicted 45 million worldwide HIV infections by 2000. There was no government response, however, even after portions of the report were declassified and released as a State Department white paper in 1992.28 During the mid-1990s, apathy continued among US government bureaucracies such as the CDC and the USAID. Fear of creating unrealistic expectations and of losing budget autonomy, as well as the conviction that development money would be better spent on less expensive projects with proven results, contributed to the lack of activity. The governments of Western Europe were similarly unresponsive.29 This denial was mirrored in two other sectors of society within and among developed countries—domestic AIDS NGOs and multinational corporations, specifically those within the pharmaceutical industry. In the latter case, the drug companies reached consensus in the early 1990s that price discounts in the developing world would be a bad idea. They agreed that governments had the responsibility to worry about accessibility and distribution, that AIDS drug regimens were too complicated to be adapted to developing country conditions, and that other barriers to treatment existed in developing countries.30 Meanwhile, AIDS NGOs spent much of their time in the 1990s focusing on how to get combination drug therapies to their own clients. Until full accessibility existed at home, they believed, money sent to developing countries was money that deserved to be spent domestically. By 2001 this type of reasoning had been replaced among many AIDS NGOs in developed countries by a position that sufficient resources existed to address AIDS both domestically and globally, as exemplified by the many statements and press releases made by AIDS NGOs during the UN Special Assembly on HIV and AIDS in 2001, which had an unprecedented level of accredited observers from civil society.

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As it became more and more difficult to deny the level of the AIDS catastrophe in developing countries, the developed world began to move away from denial of the problem to a position (sometimes explicit, sometimes implied) that it was up to the developing world to bear the responsibility of its emerging health crisis. This position has taken many forms. One form consisted of emphasizing individual behavior. Again, this approach had been seen within developed countries during the early years of struggling with AIDS, when governments often made the argument that it was the responsibility of individuals to change behavior (that is, to stop engaging in high-risk behaviors). Governments in developed countries have also argued that it is cultural norms (such as the poor treatment of vulnerable women in some developing countries) that results in the spread of AIDS and that aid from developed countries cannot change these factors. A second approach emphasizes the role of national leaders. This line of argument has been applied to cases of both strong and weak national leadership on AIDS. Thus, when Ugandan president Yoweri Museveni provided strong leadership in addressing his country’s AIDS crisis, and Ugandan transmission levels subsequently plummeted, rich countries argued that their help was not needed—a developing country could tackle AIDS on its own. But in the case of Zimbabwe under President Robert Mugabe or, as is more widely reported, South Africa under President Thabo Mbeki, the argument was that it was governments, not lack of outside aid, that prevented developing countries from coping with HIV/AIDS. This thinking shows how the developed countries were able to rationalize turning a blind eye to great human suffering. In the second stage of response, “solutions” were offered at the international level that, although ostensibly aiding developing countries, actually placed most of the costs squarely back upon them. This approach lay behind both World Bank and US Export-Import Bank offers of loans to sub-Saharan African countries. When these countries responded negatively to these loan offers, the banks expressed dismay. Yet they failed to address, or even acknowledge, the fact that the developing countries turned down the loans for two reasons. First, the loans seemed an inappropriate vehicle for aid, given the fact that these same countries were actively campaigning for debt relief and that AIDS was predicted to set back the economies of these countries even further in the years ahead. If recipient countries could not pay back loans now, why should they expect to be able to pay them back in a future that portends even worse economic conditions? A second weakness of the loan scheme was that developing countries realized that they were not the only, or possibly even primary, beneficiaries of the loans. Rather than being able to buy drugs at steeply reduced prices, as many developing countries were aspiring to do, the loans were designed as a means to provide AIDS treatments at Western retail prices—a policy that would have benefited multinational pharmaceutical companies but would have set back the policy goals of developing countries.

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Eventually, in the face of ever-increasing numbers and the growing pressure of AIDS activists around the globe, the developed world could no longer argue that the problem was insignificant or that developing countries could possibly solve it by themselves. Rather than resulting in an acknowledgment of the responsibilities of the First World, however, a third (again multifaceted) argument was that the problem was, in fact, insoluble. This argument was voiced at a time when the context of the debate had changed quite rapidly. Owing in very large part to the strenuous efforts of AIDS activists and NGOs working in both the global North and South (and in many cases in coordinated campaigns), AIDS-related demands of activists had achieved a high level of prominence in the mainstream media. The June 2000 Thirteenth International AIDS Conference held in Durban, South Africa, made more headlines as a forum for the demands of passionate and well-organized activists than as a showcase of international research. What is more, UN Secretary General Kofi Annan publicly pledged to make AIDS his “personal fight.” And, in April 2001, thirty-nine of world’s largest drug companies succumbed to international pressure and vocal activism, dropping their legal efforts to prevent the South African government from manufacturing cheap versions of patented AIDS drugs. The central theme of these demands was that future cases of HIV infection must be averted through prevention and that current cases must be ameliorated through treatment. This latter demand is not questioned as a vital strategy within developed countries, where sophisticated antiretroviral treatment has been the standard of care since the late 1990s. Yet it was seen as widely radical in the context of developing countries. The first and most obvious reason was cost. In the developed world, the combination of drugs (referred to as combination therapy, the “cocktail,” or ARVs) used to directly attack HIV replication (as opposed to treating the opportunistic infections it causes) retails at around $10,000 to $12,000 per year. Citing these figures, the developed countries argued that such costs were utterly impractical for countries in the developing world where per capita incomes are many times lower than these prices. Activists countered, however, that the retail cost of ARVs bears little resemblance to their actual manufacturing costs, which are many times less. This assertion was given credibility when generic manufacturers, beginning with the Indian company Cipla, offered a version of the cocktail for $500 per year.31 Anticipating the competition of generic companies and the protests that were forthcoming in Durban, the five major branded manufacturers of ARVs announced in May 2000 that they would offer steep price cuts to the developing countries hardest hit by AIDS.32 Although the announcements have not been followed with commensurate action, they actually helped to support the argument put forth by activists that the branded pharmaceuticals could, in fact, offer their products at far less cost in developing countries. Basing their figures on the availability of much more affordable generic drugs and deeply

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discounted (tiered) price structures, activists began to argue that funding treatment in developing countries, both for opportunistic infections and HIV, was possible and desirable.33 It was at this point, when documented arguments had been widely distributed claiming that the largest obstacle to treatment was not actual cost but political will (both from governments who did not feel like offering aid and from pharmaceuticals who were worried about intellectual property rights), that a new set of arguments on the impossibility of treatment was launched by both the pharmaceutical industry and the governments of the wealthy countries. This argument—that spending money on treatment would be futile—was based on four premises. First, opponents claimed that ARVs could not be distributed because developing countries lacked the health-care infrastructure (hospitals, clinics, trained personnel, etc.) to do so. Speaking during the UN special session, Pfizer CEO Henry McKinnell claimed that the infrastructure argument was so serious that there was no point in pursuing the global fund at levels the secretary general had recommended. “Trying to get that much money into the system would be like pushing on a string,” he said. “We couldn’t spend that much money if we had it.”34 Second, they claimed that the requirements for taking the drugs (rigorous dosing schedules, complex combinations of drugs, etc.) would be too difficult for people in developing countries. A third and related claim was that people in developing countries would be unable to adhere to these requirements and that drug-resistant strains would consequently develop. And, fourth, there was concern that treatment would be substituted for prevention, resulting in inefficient uses of resources and further spread of HIV. The comments of University of Pennsylvania bioethicist Arthur Kaplan are typical: “While drugs are an answer to the AIDS plague in North America and Western Europe, they are not the solution for Africa and many other extremely poor nations. The reasons are simple. Drugs designed for people in more developed countries do not work as well for people living in countries that have no hospitals, clinics, clean water, sewers, roads or doctors.”35 Advocates of treatment provision argued that these claims were highly exaggerated. Instead of disputing that health-care infrastructure was seriously lacking in many developing countries, however, they suggested a number of counterpoints. First, NGOs such as Médicins sans Frontières and Oxfam, which have outstanding credentials regarding delivery of health services in developing countries, went on record in high-profile campaigns promoting treatment and claiming that there were many lives that could be saved immediately if drugs were available. They also argued that the experience of Brazil, where strong prevention and treatment programs had drastically reduced infection rates and suffering from AIDS, suggested that the provision of treatment fuels the development of an infrastructure to deliver it. On the issues of pill burden and dosing requirements, treatment advocates argued that opponents were working with outdated assumptions. For example,

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to Jesse Jackson’s claim that “AIDS treatment requires 20, 30 or 40 pills a day,”36 they responded that currently a typical effective combination required only three pills twice a day and that none required more than fifteen pills a day.37 On the related issue of drug adherence, both the US Treasury Department and USAID head Andrew Natsios argued that Africans could not be expected to take AIDS drugs because they did not have a Western view of time.38 These assertions were countered with evidence of programs in the Côte d’Ivoire, Brazil, and Haiti.39 Although these programs do not suggest that their clients are 100 percent compliant, neither do programs that exist in the developed countries, and proponents noted that it was hardly justifiable to argue that only rich countries have the right to risk drug resistance. Furthermore, these proponents argued, the virus had shown itself able and likely to mutate absent treatment. Furthermore, given that successfully administered ARVs decreased the amount of virus within individuals, they also decreased the opportunity for mutations within those individuals. Finally, treatment advocates found the claims regarding the substitution of treatment for prevention to be perhaps the most specious of all. To the contrary, they argued, treatment complements prevention. Not only does treatment offer an incentive for people to undergo voluntary testing (an extremely important consideration given that the vast majority of the world’s HIV-positive people are not aware of their status), successful treatment lowers viral loads, making people less infective and less likely to pass the virus to their unborn and breast-fed children. It is important to note that treatment advocates argued for both medicines and services to address the virus itself and associated communicable diseases, including tuberculosis and sexually transmitted diseases, that make individuals more vulnerable to becoming infected with HIV and to progressing to AIDS. Thus, treatment for AIDS can prevent other illnesses. Finally, treatment, by prolonging the lives of adults, prevents the creation of yet more orphans, an enormous consideration for countries already reeling with the additional burden of many thousands of children with no source of support or care. At the time these debates were playing out in news stories and conference halls, mainly during the first two years of the new millennium, proponents of treatment were arguing that a vast increase in assistance to developing countries to deal with their AIDS crises would go a long way toward providing treatment and prevention and toward ameliorating some of the worst suffering from the crisis. The initial estimates of what would be required varied. UNAIDS director Peter Piot originally suggested $3 billion annually as a minimal response to “turn the tide of the epidemic.”40 That estimate specifically excluded the possibility of antiretroviral treatments, but some estimates included them in their numbers. Secretary General Kofi Annan originally called for the Global Fund to spend annually $7 to $10 billion, which would also include treatment for malaria and tuberculosis; the Harvard consensus

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statement estimated a need for $1.4 billion initially, moving to $4.2 billion in five years; and the Global AIDS Alliance called for $15 billion.41 These estimates usually assumed that the United States should contribute about 25 percent of the total, with the rest coming from other developed countries and, in some cases, private corporations. Although all but the smallest of these estimates would require at least a tenfold increase in the level of assistance from developed countries, such an increase was easily affordable. In calling for the original $3 billion, for instance, UNAIDS director Piot compared that figure to the $52 billion that US citizens spend annually fighting obesity.42 Harvard’s Jeffrey Sachs often pointed out that for the United States to pay its portion of the Harvard estimates would cost only eight dollars per person, or less than the cost of one movie with popcorn per year. Later, in May 2001, Sachs suggested that a global fund covering a number of lower-profile diseases besides AIDS would cost about $20 billion per year—about twenty dollars per person among the one billion people living in high-income countries.43 In 2005 the United Nations estimated that the global funding needs for AIDS would reach $15 billion by 2007.44 Considering the degree of suffering that would be reduced, and remembering that the increasing numbers are themselves a function of developed country indifference to earlier intervention opportunities, this seems an infinitesimal sacrifice for Americans. We have now moved into a fourth stage of response on the part of developed countries. Global AIDS spending, particularly through the Global Fund and the US PEPFAR plan, previously opposed as impossible and even undesirable, is a reality, and there are ambitious plans to funnel billions of dollars into the treatment of several million people. Yet the danger of inaction has now been transformed into a danger of inadequate and inappropriate action. Even the most ambitious plans, for example, the World Health Organization’s “3 by 5” initiative, which was designed to coordinate global programming to have 3 million people in treatment by 2005, would optimally have addressed only half of the 6 million people estimated to need ARV therapy in 2005. PEPFAR had a goal of one million people in treatment by September 2005, but as of March 2005 could point to approximately 235,000 (and even these figures were disputed).45 A similar problem demonstrating woefully inadequate commitment on the part of donor nations is the shortage of health-care workers in developing countries, particularly in sub-Saharan Africa. As noted previously, this shortage was initially touted by those opposed to providing ARV medication in developing countries as a justification to withhold this treatment. Yet the situation itself is painfully perverse, given the complicity of developed countries in the shortage. Developed countries are directly responsible, through very active recruitment of health-care professionals from developing countries. The wages offered by developed countries to these foreign recruits are often lower than those paid to their own citizens, but higher than prevailing wages in developing countries, shaping the mechanism for a severe “brain drain.”

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As Physicians for Human Rights has pointed out, Ghana, for instance, has lost 69 percent of Ghanaian doctors, 25 percent of nurses, and 42 percent of pharmacists who graduated between 1993 and 2002 to other countries.46 The structural adjustment programs forced on developing countries by the IMF and the World Bank, under the supervision of powerful developed countries, stripped the health-care sector of its ability to pay competitive salaries to health care professionals and the educational system of the ability to train them in adequate numbers and to high standards. And finally, once again, it was the long delay of developed countries in beginning to shoulder their obligations in the first place that contributed to the decimation within their ranks by AIDS, to which health-care workers are obviously not immune. Physicians for Human Rights estimated that doubling the 2006 health-care workforce would cost at least $2 billion in the first year and more in subsequent years.47 Yet donor nations are not even addressing their obligations to help stanch the flow of talent from poor to rich countries, much less their obligation to redress the harm they have already created. In addition, with the new programs have come new stipulations, many of which run counter to the very goals of treatment and prevention of the new resources. Requirements to promote abstinence-only programs that cannot work in places where there is power inequality between sexual partners and stipulations that NGOs receiving funds for work with sex workers must make ideological statements denouncing sexual trafficking (and in the perception of their clients, the clients themselves), for instance, only add to the culpability of developed countries in blocking the prevention of HIV/AIDS. As with the previous three stages of response, the cost to developed countries to respond in a more comprehensive and helpful way is tiny, especially when compared to the costs of an inadequate response.

Ethics and International Assistance: When Need Arises, the Wealthy Ought to Act Within the world’s economically developed societies, assistance for poor and sick citizens was established and institutionalized over the last century or more. Social welfare systems, which routinely redistribute resources from the more affluent in society to those who are poor, are now commonplace in economically developed societies. In recent decades—especially since the midtwentieth century—the desire to help those in need has extended to international affairs.48 The world’s wealthy countries now give substantial amounts of money to the poorer countries, often for self-interested reasons but also because it is now viewed simply as the right thing to do. (It is true that foreign assistance spending has declined and that large sums have been diverted to the US “war on terror,” but such spending has hardly ended, and much of

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the decline is attributable to the end of the Cold War, particularly in the United States.) What has justified this international assistance? More specifically for this chapter’s discussion, why should the developed countries work much harder to ease—and eventually end—the tremendous global suffering from AIDS? Some answers can be found in ethical philosophy. That is, there are many moral justifications for further assistance between the world’s rich and poor countries, and just as many moral arguments against the status quo. Here we introduce two of the ethical arguments. We then turn to a discussion of how these ideas have been manifested in international affairs. These existing practices of international assistance in other issue areas can, and arguably should, serve as launching points for more action to combat HIV and reduce the suffering of those affected by AIDS around the world. Ethics of Aid: Utilitarianism and Responsibility for Harm We can look to a number of ethical principles and considerations to find powerful justifications for greater action by the world’s more affluent countries to help poor countries and their people cope with HIV and AIDS. Among those are (1) utilitarianism ethics and (2) considerations of responsibility for harm. Utilitarianism. Utilitarians generally argue that we should act in such a way as to achieve the greatest good (“happiness”)—or reduce the largest amount of suffering—for the greatest number of individuals.49 One particular utilitarian strain of thinking that is germane to this issue is found in Peter Singer’s seminal essay, “Famine, Affluence, and Morality.”50 Following Singer, we “begin with the assumption that suffering and death from lack of food, shelter, and medical care are bad.”51 Anyone who does not think that suffering and death from AIDS, not to mention the attendant consequence for society, are very bad, will not agree with Singer’s argument or ours. (We doubt, however, that many people feel this way.) Singer’s fundamental assertion was this: “If it is in our power to prevent something very bad from happening, without thereby sacrificing anything else morally significant, we ought, morally, to do it.”52 Singer illustrated his point this way: “An application of the principle would be as follows: if I am walking past a shallow pond and see a child drowning in it, I ought to wade in and pull the child out. This will mean getting my clothing muddy, but this is insignificant, while the death of the child would presumably be a very bad thing.”53 That is, we see great suffering, we are able to stop it, and doing so is relatively easy. Under these circumstances, we have a moral duty to act. (Indeed, Singer would go further to say that we have a duty to act even if it is not easy to do so.) According to Singer, “The outcome of this argument is that our traditional distinction . . . between duty and charity cannot be drawn, or,

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at least, not in the place we normally draw it. . . . The present way of drawing the distinction, which makes it an act of charity for a man living at the level of affluence which most people in the ‘developed nations’ enjoy to give money to save someone else from starvation, cannot be supported.”54 The same can be said for providing aid—and certainly not working to deny it—for those suffering and dying from AIDS. As Singer pointed out, a moral point of view requires us to consider those living in other countries and on other continents.55 Singer’s ethics make no (moral, as opposed to practical) distinction between those who are near or far: “The fact that a person is physically near to us, so that we have personal contact with him, may make it more likely that we shall assist him, but this does not show that we ought to help him rather than another who happens to be further away. . . . We cannot discriminate against someone merely because he is far away from us (or we are far away).”56 What is more, we cannot easily claim that we need not act because we do not know of the suffering experienced by others. Modern communications technologies and especially the global media usually make us aware of most major problems eventually. Even though AIDS in the developing world is not in the news every day, it is there often. It would arguably take willful neglect for most citizens of the developed world, and certainly policymakers there, to remain ignorant of this problem. The emphasis by the rich countries of the world on HIV/AIDS among their own citizens, although commendable as far as it goes, does not go nearly far enough. The vast majority of suffering from AIDS is in the world’s poor countries. The utilitarian perspective would require that this suffering be addressed in a much more concerted fashion.57 Thus, the way people in the affluent countries have reacted to the global AIDS crisis cannot be justified or moral grounds.58 To put it in Singer’s words, “Given the present conditions in many parts of the world, however, it does follow . . . that we ought, morally, to be working full time to relieve greater suffering of the world that occurs as a result of famine or other disasters.”59 Fulltime work may be far too much to ask of people today, but is it too much to ask for something well short of that, which is presently not being provided? We think not. As Singer pointed out, most people are selfish and unlikely to do what they ought to do. But this is hardly justification that we should not do what we ought, morally, to do.60 By taking really quite easy action that brings no great burden upon themselves or their citizens, governments of the world’s wealthy countries can reduce incalculable human suffering experienced directly and indirectly from HIV/AIDS by literally millions of people in the Third World. This is crucial: those suffering from HIV/AIDS are not asking for all that much—although as time goes by their need grows and so does the moral and practical burden on the developed world to provide aid. By Singer’s measure, therefore, the developed countries ought, morally, to act in ways that aid those suffering from this pandemic. This utilitarian per-

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spective establishes a moral imperative to act. Doing so would, very simply, reduce great amounts of human suffering and thereby bring much “happiness” (in the utilitarian conception, as well as the everyday one) to the world. But what if, as we have suggested, the developed world bears some culpability in the HIV/AIDS crisis? If that is indeed the case, the moral responsibility to act is even greater, thus suggesting that the response should be more substantial and faster. To be sure, the wealthy countries did not go out and purposely infect people. But the developed world is in fact complicit in the present state of affairs: by first ignoring the problem, by for nearly two decades failing to support and sometimes fighting against international organizations trying to provide aid, and by using its power to help pharmaceutical makers to keep prices high (and, some might add, by its hand in an exploitative international economic system that contributes to poverty upon which HIV/AIDS feeds). Responsibility for harm. An ethical (and legal) perspective of responsibility for harm says, quite simply, that those responsible for causing harm are responsible for ending and ultimately righting that wrong. Henry Shue clearly stated the fundamentals of this perspective: “The obligation to restore those whom one has harmed is acknowledged even by those who reject any general obligation to help strangers. . . . This is because one ought even more fundamentally to do no harm in the first place.”61 To be sure, acquiring HIV is often the responsibility of those who have it,62 but even here the developed countries bear some responsibility. Developed countries are not doing enough to finance education campaigns and the promotion of women’s rights, for example, which could reduce the spread of HIV. Their funding for treatment, although improving somewhat in recent years, is miniscule relative to the scale of the problem and relative to their ability to help. But these are acts of omission. What of acts of commission? Many of the developed countries, and indeed their multinational corporations that have worked with governments to promote their objectives, have, as we have pointed out, actively worked to prevent the lowering of drug prices essential to widespread treatment and prolongation of life for people living with HIV/ AIDS. This is much more clearly an act that involved the developed world directly in exacerbating the AIDS epidemic confronting the world. This problem is not nearly as acute as it was a few years ago, but resistance lingers and in some cases is still actively undertaken. The same can be said, as noted above, for the ways in which the developed countries have undermined, both directly and indirectly, the health-care system that should have been a first line of defense. Insofar as the developed countries are complicit in suffering experienced in the developing world, the obligation to act is much stronger. From a power perspective, the developed countries have agency in the forms of both “power to” and “power over” elaborated in Chapter 2. They have misused their “power over,” for example, by forcing countries to make concessions on

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intellectual property interests that sacrifice the public health of their citizens. And they have withheld their “power to” share resources that, with almost no sacrifice on the part of the wealthy nations, would hugely expand the tools, solutions, and therefore the empowerment of the nations, groups, and individuals most severely affected by the pandemic. Hence, they are obliged to provide aid to mitigate and, it is to be hoped, to end suffering from AIDS. Evolving Norms of International Assistance Past and contemporary international history provides us with examples of greater recognition by the world’s wealthier countries that they ought to provide aid to the world’s poorer countries. It also helps us understand why more has not been done in the case of HIV/AIDS. There has been a historical trend toward increased international transfers of aid and mutual cooperation to reduce human suffering beyond the borders of the wealthy countries. The logic of these changes is quite simple: problems requiring action arise in which human beings are experiencing tremendous suffering. The problem is sufficiently immense that those suffering from it cannot implement solutions or mitigation measures without help. Solutions to the problem or measures to mitigate the resulting human suffering exist, and those solutions and measures— money, expertise, technology, and so on—are readily available in countries with the ability to supply them (most often the world’s wealthy countries). Doing so would not significantly harm those providing the aid (and might indeed benefit them materially in the long term, for example, when those aided become trading partners). Therefore, those with the ability to provide the necessary aid ought to administer it—even if they are not directly complicit in causing the problem, but much more profoundly if they are. Here we look at three areas in which international assistance between the world’s rich and poor countries has grown. This illustrates the contemporary international context of international assistance.63 We believe that the trend that is illustrated is indicative of what ought to happen in the case of HIV/AIDS. Indeed, there are some indications that movement in this direction has started. These historical trends establish only a starting point, however. Assistance and action to limit suffering from AIDS should go even further. Disaster and famine relief: The wealthy ought to respond to natural disasters and feed the starving. Many of the world’s people live in places that are prone to natural disasters from events ranging from hurricanes and cyclones to earthquakes and volcanic eruptions. These disasters can be severe, leading to many lost lives, extensive damage to infrastructure necessary for economic vitality, and widespread human suffering. Most of these events are very difficult to prepare for, especially in the cases of poor countries experiencing poverty on a daily basis. It seems self-evident at this point

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in history that the developed countries recognize that they ought to help these countries when disaster strikes. Thus, when Turkey experiences a major earthquake, or when Honduras is hit by a hurricane, or when a volcano erupts in the Philippines, governments act by providing direct assistance or money necessary to cope with the resulting destruction and suffering. Although reactions vary in magnitude and form, they are usually almost immediate. We may read editorials in the developed countries calling for faster and more robust responses following natural disasters, but it would be a disturbing editorial that argued that we should not act. Doing so is so beyond the pale as to be almost unthinkable. Indeed, we might say that there is an international obligation for the wealthy to provide aid to the poor—and often the not so poor— in times of natural disaster. Although this is not a requirement of international law, it is almost unassailable in the international norms of the modern world. What does this recognition that we ought to provide relief following natural disaster say about global HIV/AIDS? Some argue that HIV/AIDS is much like a natural disaster because it originated in nature, among the apes, and was transmitted to humans who lived among them. It was, according to this conception, nobody’s fault. But, as the case of disaster relief shows, even if the wealthy countries are not at fault, the recognition that they ought to provide aid exists, and they routinely act upon this sentiment. What is the reaction in cases of famine? Before the twentieth century, when countries suffered from famine, people in the rich countries were no doubt saddened and perhaps prayed for the starving, but there was little they were willing to do (famine was sometimes not far from their own doorsteps) and even less they could do (by the time aid reached those in need by sailing ship, it would probably be too late). As the developed countries began to experience food surpluses and as technologies improved for moving goods around the world, however, a new sense of how to respond emerged: those countries with a food surplus ought to provide relief to those suffering from famine.64 The wealthier countries cannot now easily ignore famine and starvation; to do so would almost certainly now lead to a chorus of condemnation from their own people (assuming the public is aware of the disaster, as is most often the case now). (The practical solution is of course to aid famine-prone countries in the long term to prevent future famines, but such an obligation is not yet highly developed.) Recognition by the developed countries that they ought to distribute food to those suffering from famine is today visible by airlifts of food and other famine relief. This sense that they ought to act is so great that governments of wealthy countries have felt obliged to act even when their national interests would clearly suffer from doing so. For example, during widespread famine in the Soviet Union in the early 1920s, the United States spent massive amounts of money and expended other aid to feed the starving millions there. This aid was sent despite extant hatred of the new Bolshevik regime, and even despite Lenin’s acknowledgment that, without aid, the revolution would fail.

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Failure of the revolution was precisely what the United States wanted, of course, and some Americans argued that the famine ought to be allowed to continue in order to bring down the communist regime. But the United States acted nevertheless. Robert McElroy showed that US justifications for providing famine relief to Russia were not based on benefits for US farmers or for other self-interested reasons but instead on the new belief that those with a food surplus ought to provide aid to those suffering from famine, a belief that was already too strong to ignore.65 Similar arguments are being made today with regard to severe food shortages in North Korea. Up until the advent of the George W. Bush administration, the largest amount of famine aid to North Korea—headed by a regime that the United States hardly wishes to see remain in power—came from the United States. Indeed, it would not be far fetched to argue that the United States has been largely responsible for keeping the country alive with its food aid.66 There are of course practical reasons for providing the aid—a sudden breakdown in North Korean society and government could spill over into conflict on the Korean peninsula—but it is in any case extraordinarily difficult to argue that the people of North Korea should be allowed to starve to death as a means for bringing about political change there.67 Such arguments run up against the established international norm of famine relief. Hence we see the continuing efforts to bring down the regime in a more humane fashion. Similarly, in Afghanistan, where the Taliban was brutalizing the Afghan people, the United States and others chose to continue food aid even as the United States prepared to overthrow the government through war, and the United States has provided food aid to government-held parts of Sudan, despite that government’s war on its own people. Indeed, efforts to end UN sanctions against Iraq before the US attack were often about the suffering of the Iraqi people. The Iraqi government was to blame, to be sure, but the practical effects of its malfeasance were hunger and disease in Iraq. Even the powerful advocates of keeping the sanctions on Iraq as they were for over a decade, despite having some very good arguments, were looking for new ways of punishing and containing the brutal Iraqi regime without causing suffering among its people. To be sure, to a large degree famine and starvation are the consequence of government action (or intentional inaction), as demonstrated strongly by widespread famine from Mao’s so-called Great Leap Forward and, more intentionally, by Pol Pot’s despicable policies toward the Cambodian people or by the policy of the current Sudanese government toward its rebellious regions.68 And many famines are at least an indirect consequence of governments’ failures to prepare for them. In the case of HIV/AIDS, many argue that it is the fault of their governments. From this perspective, they are the ones to blame, so perhaps the rich need not feel an obligation to provide aid. But the case of famine relief shows that even where national governments are to blame, those with the means to reduce severe human suffering ought to do so.

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Environmental change: Common but differentiated responsibility. The world is experiencing many environmental problems, with the most acute effects being felt in the poorest countries. Indeed, environmental changes— ranging from water pollution and shortages to desertification, air pollution, and climate change—are placing increasing strain on developing economies and leading to substantial human suffering. In recent decades, and particularly in the 1990s, the world’s governments started to recognize their responsibilities toward the environment. To be sure, their actions have fallen short of what is required to protect the world’s ecology, but they have started to act through the implementation of national environmental protection measures and, to a lesser degree, through international cooperation (e.g., prevention of stratospheric ozone depletion and river pollution). More to the point, the developed countries have increasingly been willing to aid the poorer countries in their efforts to combat adverse environmental changes, and the wealthy of the world have started to acknowledge—and act upon—their responsibility for many of these problems.69 Global warming and resulting climatic changes are a particularly salient case in point. Among the key principles of the 1992 UN Framework Convention on Climate Change (FCCC) was the notion of “common but differentiated responsibility,” whereby the economically developed countries would take the lead in addressing the problem of climate change, specifically excluding developing countries from binding limitations on emissions of the greenhouse gases that lead to global warming.70 The developed countries are disproportionately responsible for historical greenhouse gas emissions, and they have the greatest capacity to act.71 Thus the convention makes few demands on the much less responsible and usually much less capable developing countries. As a principle of international environmental law, common but differentiated responsibility evolved from the notion of “common heritage of mankind” in the UN Convention on the Law of the Sea,72 as well as the international designation of certain areas (Antarctica and the deep seabed) and resources (e.g., whales) as “common interests” of humankind.73 The UN General Assembly went further by recognizing the earth’s climate system as a “common concern” of humankind, indicating a “certain higher status inasmuch as it emphasizes the potential dangers underlying the problem of global warming and ozone depletion [and implying] that international governance regarding those ‘concerns’ is not only necessary or desired but rather essential for the survival of humankind.”74 Bearing in mind that the climate is of such crucial “common concern” to humankind, it follows that there is a responsibility on the part of countries to protect it. This raises the question of who is responsible. The answer derives from each country’s historical responsibility for atmospheric pollution, its level of economic development, and its capability to act. This was suggested by Principle 23 of the 1972 Stockholm Declaration, which stated that it is

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essential to consider “the extent of the applicability of standards which are valid for the most advanced countries but which may be inappropriate and of unwarranted social cost for developing countries.”75 The principle of common but differentiated responsibility is described succinctly in Principle 7 of the 1992 Rio Declaration on Environment and Development: States shall cooperate in a spirit of global partnership to conserve, protect and restore the health and integrity of the Earth’s ecosystem. In view of the different contributions to global environmental degradation, States have common but differentiated responsibilities. The developed countries acknowledge the responsibility that they bear in the international pursuit of sustainable development in view of the pressures their societies place on the global environment and of the technologies and financial resources they command.76

In addition to the FCCC, this principle was implicit in the 1987 Montreal Protocol on Substances that Deplete the Ozone Layer,77 and it was recognized in other important international undertakings.78 All countries could suffer from climate change, although the poor countries of the world would suffer most owing to their vulnerable geographies and economies.79 What is more, it is the economically developed countries of the global North that have generated the most greenhouse gases since the advent of the Industrial Revolution, and they have thereby benefited from using the global atmosphere as a sink for the harmful byproducts of their economic development.80 During the negotiations for the FCCC, developing countries were unified in emphasizing the historical responsibility of developed countries for climate change. They agreed to participate in the climate negotiations only on the condition that they not be required to accept any substantial commitments of their own.81 The United States and other developed country parties to the FCCC accepted this standard (the George W. Bush administration’s disturbing policies notwithstanding) because they knew developing countries would not—and in many cases could not—limit their greenhouse gas emissions and cope with climate change otherwise.82 The climate change regime is perhaps the most visible manifestation that the principle of common but differentiated responsibility has been established in international environmental instruments negotiated over the last few decades. It is recognition that all countries are responsible for limiting damage to common global environmental areas, with the important qualification that the developed countries should take on much greater responsibility in preventing and mitigating global pollution and indeed in helping developing countries in their own efforts to protect the global commons.83 It is certainly true that the developed countries have so far not lived up to the spirit of the common but differentiated principle. But neither have they done nothing. They have given billions of dollars to developing countries through the Global

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Environment Facility and the Clean Development Mechanism. And the West Europeans in particular have gone from following the US lead on this issue to confronting it and challenging Americans to live up to their obligations according to this principle. Most important, the codification of the common but differentiated principle in the climate change convention is an important turning point for the recognition by the wealthy that they have special responsibilities not held by the poor.84 To be sure, environmental cases differ from those of disaster and famine for many reasons, but they are particularly different because, in many cases, the wealthy countries clearly contribute to the problems and therefore share blame for them. This should increase the sense of obligation by the wealthy to give the poor the means to address adverse environmental changes and their consequences. As such, the case for aid in many environmental issue areas is even stronger than that for disaster and famine relief. What comes from this is that common problems require common action, but those countries with the most responsibility for the problems and those with the greatest capacity to address them have an obligation to aid those less responsible or less able to act. HIV and AIDS: Will There Be Ethical Progress? The historical emergence of a sense of obligation by the world’s developed countries toward providing assistance to the poorer countries when they are in dire need and the frequent action on this sense of obligation show that we have accepted that in a civilized world, the wealthy ought to help those in need. This argument gains strength as the responsibility for problems grows— although, it is important to note, responsibility is clearly not a requirement before assistance ought to be provided. Thus a strong case for aid from the global rich to the global poor has a solid foundation not only in the corpus of ethical reasoning but also in international practice and in new international instruments, as shown by, among other issues, the cases of disaster relief, famine aid, and environmental change. To withhold such aid is also a misuse of power. This is true in the sense that doing so would serve to perpetuate and deepen the inequities in power that created the problem in the first place, as described in Chapter 2. It would also violate the international norms described above that have been established regarding the ethical obligations that go along with power resources (in this case, particularly, wealth). Will the response of the world’s wealthy countries toward HIV/AIDS in the developing countries build upon the historical trend of increasing recognition that the wealthy ought to aid the poor? There are indications that it is moving in this direction, and there are ethical arguments for why it ought to, as we have tried to show. It seems to us that the publics of all countries, including those in the developed world, are nudging this historical trend forward. As former UN secretary General Kofi Annan argued, global public

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opinion has pushed the developed country governments to start opening their wallets to assist those suffering from HIV/AIDS in the developing world: “There has been a worldwide revolt of public opinion. People no longer accept that the sick and dying, simply because they are poor, should be denied drugs which have transformed the lives of others who are better off.”85 It is simply becoming too difficult for the wealthy countries to resist the tide of public opinion, because the arguments for resisting are seldom persuasive and run counter to so many good ethical arguments, and historical precedents, for helping those worst affected and least able to help themselves. The difficulty that policymakers have in resisting this apparent tide of public opinion may come from the basic logic of the changing norms of international assistance. An immense crisis exists, and those suffering from it often lack the means to deal with it to any satisfactory degree. Solutions to this crisis also exist, but many of them (e.g., medications for treating AIDS, money to acquire and administer treatment, resources for prevention programs) are possessed by the world’s wealthier countries. Those with the ability to help can do so without significant sacrifice. Hence, those countries with the means to provide solutions to the HIV/AIDS crisis and to give succor to those now suffering from it have a moral obligation to act, and to act in a magnitude that mirrors the dimensions of the problem, given that this is eminently possible.

Conclusion The HIV/AIDS crisis presents the world with profound moral challenges. It is one of the greatest manifestations of human suffering ever witnessed, largely because the vast majority of those suffering directly and indirectly from HIV/AIDS live (and die) in the world’s poorest countries. Yet the response to this crisis by the world’s wealthy countries has been altogether lacking. They have at least now acknowledged the problem, and they have started to provide some help. Their response remains weak and grossly inadequate, however, relative to the scale of the problem and the capability of the developed world to provide aid, and some governments and businesses continue to resist doing much at all. We have argued that this needs to—and ought to—change. Indeed, there are many ethical justifications for developed countries to provide far more help in preventing HIV transmission and caring for those with AIDS throughout the world, not just at home. Doing so would dramatically reduce the amount of human suffering caused by AIDS, and it would do so at very little cost to those providing the aid. This alone is enough justification for action. What is more, the developed world bears some responsibility for the suffering from AIDS in the developing world. It ignored the problem for too long and at times actively worked to prevent the worst affected countries from caring for their sick with affordable medicines. This adds to the moral burden

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of the world’s wealthier countries and peoples. Our modern, civilized international society should require the world’s wealthy to aid the world’s poor when they are in such great need and when help can be provided at such a small cost. That the world’s poor are in need in this case is undeniable, and provision of aid is possible. Hence, we must conclude that further delay not only runs counter to the interests of all those who suffer from HIV/AIDS, as well as those indirectly affected all over the world, but that it is immoral and contradicts a desirable historical trend toward more care by the world’s wealthy for the world’s suffering poor. The case for denying aid is now very hard to make; the case for doing much more is very strong.

Notes Some of the ideas in this chapter first appeared in Paul G. Harris and Patricia Siplon, “International Obligation and Human Health: Evolving Policy Responses to HIV/ AIDS,” Ethics and International Affairs 15, no. 2 (October 2001): 29–52. We are grateful to all those individuals, known and anonymous, who provided helpful comments on the original essay and this updated and revised version. 1. UNAIDS, “Resources Needed for an Expanded Response to AIDS in Low and Middle Income Countries,” presented at the Program Coordinating Board, 17th meeting, Geneva, July 27–29, 2005, 12. Available at http://www.unaids.org/NetTools/Misc/ DocInfo.aspx?LANG=en&href=http://gva-doc-owl/WEBcontent/Documents/pub/ Publications/IRC-pub06/ResourceNeedsReport_24Jun05_en.pdf. 2. UNAIDS, AIDS Epidemic Update (Geneva, Switzerland: UNAIDS, 2004), 1–2. Available at http://www.unaids.org/. 3. Ibid., 3, 19. 4. Ibid., 19–20. 5. Ibid., p. 2. 6. Individual Members of the Faculty of Harvard University, “Consensus Statement on Antiretroviral Treatment for AIDS in Poor Countries,” April 4, 2001, 3. Available at http://www.hsph.harvard.edu/bioethics/pdf/consensus_aids_therapy.pdf. 7. Gerald Stine, AIDS Update 2000 (Upper Saddle River, NJ: Prentice Hall, 2000), 11. 8. These figures are taken from USAID, “USAID CP FY2000: AFR Regional Report.” Available at http://www.usaid.gov/pubs/cp2000/afr/afr_over.html. See Bates Gill and Sarah Palmer, “The Coming AIDS Crisis in China,” New York Times, July 16, 2001. 9. An excellent and more extensive discussion of these interactions of poverty and HIV can be found in Brook K. Baker, “South African AIDS: Impacts of Globalization, Pharmaceutical Apartheid, and Legal Activism,” April 3, 2001, 4–7. Available at http:// globaltreatmentaccess.org. 10. One of the earliest series of in-depth reports published in the West of the tragic situations created by HIV in sub-Saharan Africa is provided in a Pulitzer Prize–winning series by Mark Schoofs, “AIDS: The Agony of Africa,” Parts 1–8, Village Voice, November 9, 1999–January 4, 2000. Available at http://www.villagevoice.com/issues/ 9952.schoofs.html.

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11. World Bank, “Difficult Health Policy Choices in a Severe AIDS Epidemic,” in Confronting AIDS: Public Priorities in a Global Epidemic, a World Bank Policy Report (New York: Oxford University Press, 1997). Available at http://www.worldbank.org/ aids-econ/arv/conf-aids-4/ch4-1p2.htm#T2. 12. Norimitsu Onishi, “AIDS Cuts Swath Through Africa’s Teachers,” New York Times, August 14, 2000. 13. Peter Piot, UNAIDS press release, Geneva, May 7, 2000. 14. UNAIDS, Report on the Global AIDS Epidemic, 4th Global Report (Geneva: UNAIDS, 2004), 61. Available at www.unaids.org/bangkok2004/GAR2004_pdf/ UNAIDSGlobalReport2004_en.pdf; and John Donnelly, “Suddenly a Plan to Treat AIDS in Africa,” Boston Globe, February 13, 2001. 15. Reuters Health, “Civil War Looms Unless Poor Countries Get Relief from AIDS,” May 8, 2001. Available at http://www.medscape.com/reuters/prof/2001/05/ 05.09/20010508publ002.html. 16. All of these figures are taken from Jubilee Debt Campaign, “Facts and Statistics on Debt from Jubilee Debt Campaign.” Available at http://www.jubileedebt campaign.org.uk/. 17. See, for example, Tina Rosenburg, “Look at Brazil,” New York Times Magazine, January 28, 2001. 18. See European Union ambassador to South Africa Erwan Fouere’s letter to O. Shisana, director general, South Africa Department of Health, November 24, 1997. Available at http://www.cptech.org/ip/health/eu.foure.html. 19. Health GAP Coalition, “US at WHA Colludes with Drug Industry,” press release, New York, May 17, 2001. 20. Chris Tomlinson, “U.S. Speaker of the House Dennis Hastert Hears Appeal from Priest Treating Children with HIV,” Associated Press, April 12, 2001. 21. The differences in the two positions are recounted in British press articles. See Edward Alden and Nicol Degli Innocenti, “International Economy: Brussels Moots Joint Effort to Cut Drugs Prices. EU-US Initiative Call to Follow Lead on Providing Developing Countries with Cheap Treatments for AIDS, Malaria,” Financial Times (London), March 7, 2001; Nick Mathiason, “Business: Bush Blocks EU AIDS Drug Relief,” The Observer (London), June 17, 2001. 22. Donald G. McNeil Jr., “U.S. at Odds with Europe over Rules on World Drug Pricing,” New York Times, July 19, 2001. 23. All of these conditions (and several more) are developed in the context of the case of South Africa in Baker, “South African AIDS.” 24. For a description of Uganda’s success, see Alex Duval Smith, “Faith, Hope, and Charity,” The Independent, December 2, 2000. 25. See, for example, Sarah Boseley, “Uganda’s AIDS Programme Faces Crisis,” The Guardian, August 29, 2005. 26. Karen DeYoung, “U.S. Gives AIDS Fund $200 Million Donation; Bush Vows More Money for Public-Private Project,” Washington Post, May 12, 2001. 27. Office of National AIDS Policy, “The Worldwide HIV/AIDS Pandemic.” Available at http://www.whitehouse.gov/onap/facts.html. 28. Barton Gellman, “Death Watch: The Global Response to AIDS in Africa: World Shunned Signs of the Coming Plague,” Washington Post, July 5, 2000. 29. One indicator of this lack of responsiveness is the absolute numbers in foreign aid devoted to this problem by developed countries. An excellent analysis is provided by Amir Attaran and Jeffrey Sachs, “Defining and Refining International Donor

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Support for Combating the AIDS Pandemic,” Lancet 357, no. 9249 (January 6, 2001): 57–61. 30. Barton Gellman, “An Unequal Calculus of Life and Death,” Washington Post, December 27, 2000. 31. Since that time, these prices have been brought to even lower levels through a series of price reductions offered by generic drug companies based in India and then by agreements brokered by the Clinton Foundation headed by the former president. In October 2003, the foundation announced a deal with five generic companies that brought the price of the most widely used drug combination to less than $140 per person per year in very poor countries. See Office of Former President William Jefferson Clinton, “Agreement: Reduction in Prices of AIDS Drugs, 2003,” press release, October 23, 2003. Available at htttp://www.clintonfoundation.org/102303-nr-cf-hw-ai-prclinton-foundation-announces-agreement-on-affordable-drugs.htm. 32. Michael Waldholz, “Makers of AIDS Drugs Agree to Slash Prices in the Third World,” Wall Street Journal, May 11, 2000. 33. The estimates provided later in this chapter on the cost of financial assistance are predicated on these new developments in decreased drug pricing. 34. Theresa Agovino, “Delegate: AIDS Goal Too Ambitious,” Associated Press, June 25, 2001. 35. Arthur Kaplan, “Cheap Drugs Not Answer to African AIDS Crisis,” MSNBC, April 4, 2001. Available at http://www.msnbc.com/news/554660.asp?cp1=1. 36. Jesse Jackson, quoted in William Raspberry, “Overreaching on AIDS,” Washington Post, March 26, 2001. 37. Health GAP Coalition, “Myths vs. Reality: Distortions About AIDS Drugs and the Developing World,” June 10, 2001. Available at www.globaltreatmentaccess .org/content/press_releases/01/061001_HGAP_PP_MYTHS.pdf. 38. This position has prompted strong negative reactions on the part of AIDS activists in both the developed and developing world. It has also been suggested that the idea originally came from an episode of the popular US television program West Wing that portrayed the fictional US president attempting to broker a deal between drug companies and a fictional African leader. For more on this hypothesis, see John Donnelly, “Some Wonder If Life Imitates Art in AIDS Policy,” Boston Globe, June 15, 2001. 39. Individual Members of the Harvard Faculty, “Consensus Statement,” 8. 40. UNAIDS, “UNAIDS Calls on G8 for Massive Increase in Resources to Fight AIDS,” press release, July 20, 2000. Available at http://www.unaids.org./whatsnews/ press/eng/pressarc00/geneva200700. html. 41. For discussion of these estimates, see Eric Friedman and Paul Zeitz, “Estimating the Costs for an Expanded and Comprehensive HIV/AIDS Response in SubSaharan Africa,” discussion memorandum, March 28, 2001. Available at http:// www.globalaidsalliance.org/docs/estimating_costs.doc; and Individual Members of the Harvard Faculty, “Consensus Statement.” 42. Cited in Joe Lauria, “AIDS Study Cites Dire African Need, $3 B Remedy,” Boston Globe, November 29, 2000. 43. Jeffrey D. Sachs, “A New Global Commitment to Disease Control in Africa,” Nature Medicine 7, no. 5 (May 2001): 521–523. 44. UNAIDS, Resource Needed for an Expanded Response to AIDS in Low and Middle Income Countries, 9. 45. The 235,000 figure refers to numbers the United States treats and “supports” (i.e., by working with programs that provide treatment) and has been referred to repeatedly by former US Global AIDS Coordinator Randall Tobias in testimony before Congress and during travels in Africa.

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46. Physicians for Human Rights, “Health Worker Crisis in Africa: A Physicians for Human Rights Fact Sheet,” June 2006, 1. Available at www.healthgap.org/ camp/hcw.html. 47. Ibid., 4. 48. See, for example, David H. Lumsdaine, Moral Vision in International Politics: The Foreign Aid Regime, 1949–1989 (Princeton, NJ: Princeton University Press, 1993); Alain Noel and Jean-Philippe Therien, “From Domestic to International Justice: The Welfare State and Foreign Aid,” International Organization 49, no. 3 (Summer 1995): 523–553; and Louis-Marie Imbeau, Donor Aid—The Determinants of Development Allocations to Third World Countries: A Comparative Analysis (New York: Peter Lang, 1989). 49. Cf. M. Warnock, ed., Mill: Utilitarianism and Other Writings (Glasgow, Scotland: Collins, 1962); Jeremy Bentham, An Introduction to the Principles of Morals and Legislation, ed. J. H. Burns and H.L.A. Hart (London: Athlone Press, 1970). 50. Peter Singer, “Famine, Affluence, and Morality,” Philosophy and Public Affairs 1, no. 3 (Spring 1972), reprinted in William Aiken and Hugh LaFollette, eds., World Hunger and Morality, 2nd ed. (Upper Saddle River, NJ: Prentice Hall, 1996). 51. Singer, “Famine, Affluence, and Morality,” 27, reprinted in World Hunger and Morality. 52. Ibid., 31. 53. Ibid., 28. 54. Ibid., 31. 55. Ibid., 32. 56. Ibid., 28. 57. Of course, if one thinks that the well-being and lives of people in the rich countries is vastly more important—that is, if the utility experienced by one person in, say, the United States is greater than that of many people in, say, South Africa—this argument is not very strong. We doubt that many people would want to support this view very strongly, however, at least from a moral perspective. 58. Unless, of course, one places the narrowest “rights” (i.e., preferences) of selfish persons above those who are suffering greatly. Cf. Singer, “Famine, Affluence, and Morality,” 26, reprinted in World Hunger and Morality. 59. Ibid., 33. 60. Ibid., 34. 61. Henry Shue, “Equity in an International Agreement on Climate Change,” in Equity and Social Considerations Related to Climate Change, ed. Richard Samson Odingo et al. (Nairobi, Kenya: ICIPE Science Press, 1995), 386. 62. And often it is not their responsibility. Hemophiliacs and persons who have been forced to have unprotected sex, either by sheer physical force, cultural mores, or circumstances of economic survival, are among those who are clearly in no way responsible for their misfortune. 63. These are some of the major examples. Others can be found, such as the obligation to provide humanitarian relief—and at times to even intervene militarily—in times of civic, ethnic, and interstate conflict. See, for example, Thomas G. Weiss and Cindy Collins, Humanitarian Challenges and Intervention (Boulder, CO: Westview Press, 1996) and Michael J. Smith, “Humanitarian Intervention: An Overview of the Ethical Issues,” in Ethics and International Affairs, ed. Joel H. Rosenthal (Washington, DC: Georgetown University Press, 1999). 64. See, for example, Jovica Patrnogic, “Some Reflections on Humanitarian Principles Applicable in Relief Actions,” in Studies and Essays on International Humani-

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tarian Law, ed. Christopher Swinarski (Geneva, Switzerland: Martinus Nijhoff Publications, 1984). 65. Robert W. McElroy, Morality and American Foreign Policy (Princeton, NJ: Princeton University Press, 1992), 57–87. See also Benjamin M. Weissman, Herbert Hoover and Famine Relief to Soviet Russia: 1921–1923 (Stanford, CA: Hoover Institution Press, 1974). 66. This is less true of the United States under George W. Bush, whose administration has withheld food aid—despite the president’s insistence that the United States would not use food as a weapon against North Korea (an insistence that helps prove the moral rule illustrated here). 67. When asked why he thought the United States was providing food aid to North Korea, that country’s consul-general to Hong Kong, Ri To Sop, told one of us on June 11, 2001, “It’s humanitarian” and “Because we are human beings.” This is a profound assessment, given his country’s animosity toward the US government. 68. The cases just cited are of course examples of situations in which providing aid was and is decidedly difficult for practical reasons or because it ran up against other interests dear to those who could potentially provide aid. 69. See Paul G. Harris, International Equity and Global Environmental Politics (Aldershot, England: Ashgate Publishing, 2001). 70. FCCC, Preamble, Arts. 3 and 4. For a more detailed discussion of the common but differentiated responsibility principle in this context, see Paul G. Harris, “Common but Differentiated Responsibility: The Kyoto Protocol and United States Policy,” Environmental Law Journal 7, no. 1 (1999): 27–48; and Harris, International Equity and Global Environmental Politics. Available at http://unfccc.int/resource/ docs/convkp/conveng.pdf. 71. See FCCC, Preamble, where the convention notes, inter alia, that “the largest share of historical and current global emissions of greenhouse gases has originated in developed countries,” 1. 72. United Nations Convention on the Law of the Sea, 21 ILM 1262, December 10, 1982. This concept dates to the 1950s and was also integrated into the 1979 Moon Agreement. Agreement Governing the Activities of States on the Moon and Other Celestial Bodies, 18 ILM 1434, December 18, 1979. See Frank Biermann, “‘Common Concern of Humankind’: The Emergence of a New Concept of International Environmental Law,” Archiv des Volkerrechts 34, no. 4 (December 1996): 426–481. 73. Cf. the preambles of the 1959 Antarctic Treaty (402 UNTS 71) and the 1946 International Convention on the Regulation of Whaling (161 UNTS 72) and the UN General Assembly Resolution on the Question of the Reservation Exclusively for Peaceful Purposes of the Sea-Bed and the Ocean Floor, and the Subsoil Thereof, Underlying the High Seas Beyond the Limits of the Present National Jurisdictions, and the Use of Their Resources in the Interests of Mankind, Resolution 2574 D (XXIV), December 15, 1969, reprinted at 9 ILM 422 (1970). See Biermann, “‘Common Concern of Humankind’” for a more detailed discussion. 74. Biermann, “‘Common Concern of Humankind,’” 431n9. 75. Declaration of the United Nations Conference on the Human Environment (Stockholm Declaration), UN Doc. A/CONF.48/14 (1972), Principle 23. 76. Rio Declaration on Environment and Development, United Nations Conference on Environment and Development, UN Doc. A/CONF. 151/5/Rev. 1 (1992), Principle 7. 77. Montreal Protocol on Substances That Deplete the Ozone Layer, September 16, 1997, 26 ILM 1550 (1987).

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78. The principle of common but differentiated responsibility was acknowledged by, inter alia, the UN General Assembly (see GA Resolution 44/228 [1989]) and several climate-related meetings, including the Second World Climate Conference, meetings of the Preparatory Committee of the United Nations Conference on Environment and Development, the Toronto Conference Statement, the Hague Declaration, and the Noordwijk Declaration. See Philippe Sands, “The ‘Greening’ of International Law: Emerging Principles and Rules,” Global Legal Studies Journal 1, no. 2 (Spring 1994). 79. Robert T. Watson, Marufa C. Zinyowera, and Richard H. Moss, eds., Climate Change 1995: Impacts, Adaptations, and Mitigation of Climate Change (Cambridge: Cambridge University Press, 1996); Intergovernmental Panel on Climate Change [IPCC] Working Group II, “Summary for Policymakers, Climate Change 2001: Impacts, Adaptation, and Vulnerability,” IPCC Working Group February 19, 2001, draft, Geneva, Switzerland; World Health Organization, Climate Change and Human Health (Geneva, Switzerland: World Health Organization Office of Global Integrated Environmental Health, 1996); Intergovernmental Panel on Climate Change, “The Regional Impacts of Climate Change: An Assessment of Vulnerability,” Summary for Policymakers (1997). Available at http://www.usgcrp.gov/ipcc/html/RISPM.html. 80. Clive Ponting, A Green History of the World (New York: St. Martin’s Press, 1991), esp. 387–392 and 405–406. 81. Delphine Borione and Jean Ripert, “Exercising Common but Differentiated Responsibility,” in Negotiating Climate Change, ed. Irving M. Mintzer and J. A. Leonard (Cambridge: Cambridge University Press, 1994), 83–84. 82. Cf. Group of Seven Industrialized Countries (G-7) and Russia, “Final Communiqué of the Denver Summit of the Eight,” Denver, July 22, 1997, pars. 14–17. See Harris, “Common but Differentiated Responsibility.” 83. Cf. Biermann, “‘Common Concern of Humankind,’” 432–465. 84. Alternatively, we could say that almost all international legal instruments and principles that do not have prompt effect are worthless. We reject this notion. 85. Kofi Annan, “Address to the African Summit on HIV/AIDS, Tuberculosis, and Other Infectious Diseases,” Abuja, April 26, 2001. Available at http://www.healthnet .org/programs/e-drug-hma/e-drug.200104/msg00097.html.

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Acronyms

AAI AAKASH ACLU ACT UP ADAP AFDC AIDS ARV ASO AWITA AZT BJP BSP CAFTA CAG CARE CBO CCM CDC CEO DAS DATA DFID EDL FCCC FDA FTA FTAA GAC GARFUND

Accelerating Access Initiative Advocacy for AIDS, Knowledge, and Sensible Health American Civil Liberties Union AIDS Coalition to Unleash Power AIDS Drug Assistance Program Aid to Families with Dependent Children acquired immunodeficiency syndrome antiretroviral AIDS service organization AIDS Widows of Tanzania azidothymidine Bharatiya Janata Party Bahujane Samaj Party Central America Free Trade Agreement comptroller auditor general Comprehensive AIDS Resources Emergency community-based organization Country Coordinating Mechanism Centers for Disease Control and Prevention chief executive officer Department of AIDS Services Debt, AIDS, Trade, and Africa Department for International Development Essential Drugs List Framework Convention on Climate Change Food and Drug Administration free trade agreement Free Trade Area of the Americas Ghana AIDS Commission Ghana AIDS Response Fund 295

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ACRONYMS

GATAG GDP GFATM GHANET GIPA GLBT GMHC GPA HAART Health GAP HIV HOPWA HRSA HUD ICASA IDU ILO IMF INC IPR MAP MMF NACO NACP NAPWA NDC NGO NPP ORG OSI PEMS PEPFAR PUCL-K SARS SIAAP Sida STAIDS STD SUS SWAM TAC TAN TANF

Ghana AIDS Treatment Access Group gross domestic product Global Fund to Fight AIDS, Tuberculosis, and Malaria Ghana HIV/AIDS Network Greater Involvement of People with AIDS gay, lesbian, bisexual, and transgender Gay Men’s Health Crisis Global Program on AIDS highly active antiretroviral therapy Health Global Access Project human immunodeficiency virus Housing Opportunities for People with AIDS Health Resources and Services Administration Department of Housing and Urban Development International Conference on AIDS and STDs in Africa injection drug user International Labor Organization International Monetary Fund Indian National Congress Party intellectual property rights Multi-country AIDS Program Multiple Motivation Foundation National AIDS Control Organization National AIDS Control Programme National Association of People with AIDS National Democratic Congress nongovernmental organization National Patriotic Party Operations Research Group Open Society Institute Program Evaluation and Monitoring System President’s Emergency Plan for AIDS Relief People’s Union for Civil Liberties, Karnataka severe acute respiratory syndrome South India AIDS Action Program French abbreviation for AIDS Students Against HIV/AIDS sexually transmitted disease Sistema Único de Saúde (Unified Health System) Social Welfare Association for Men Treatment Action Campaign transnational advocacy network Temporary Assistance to Needy Families

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TAWLA TB TGNP TRIPS UNAIDS UNDP UNESCO UNFPA UNGASS UNHCR UNICEF UNIFEM UNODC USAID USTR WAAF WFP WHO WIPO WTO

297

Tanzania Women Lawyers Association tuberculosis Tanzania Gender Networking Programme [Agreement on] Trade-Related Aspects of Intellectual Property Rights Joint United Nations Program on HIV/AIDS UN Development Program UN Educational, Scientific, and Cultural Organization UN Fund for Population Activities UN General Assembly Special Session Office of the United Nations High Commissioner for Refugees UN Children’s Fund United Nations Development Fund for Women UN Office on Drugs and Crime United States Agency for International Development United States Trade Representative West Africa AIDS Foundation World Food Program World Health Organization World Intellectual Property Organization World Trade Organization

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Selected Bibliography

Abbott, Frederick M. “The WTO Medicines Decision: World Pharmaceutical Trade and the Protection of Public Health.” American Journal of International Law 99 (2005): 317–358. Abrams, Jim. “House Approves Major Global AIDS Bill.” Associated Press, May 1, 2003. Act Up Paris. “Compte Rendu de la Réunion Hebdomadaire” [Minutes of the Weekly Meeting], November 18, 1997. Agence France-Presse. “Barbers Hand Out Condoms to Prevent India’s AIDS.” Available at http://www.HindustanTimes.com, special edition on “Surviving AIDS” (accessed April 1, 2005). Agovino, Theresa. “Delegate: AIDS Goal Too Ambitious,” Associated Press, June 25, 2001. Aitken, Campbell, David Moore, Peter Higgs, Jenny Kelsall, and Michael Kerger. “The Impact of Police Crackdown on a Street Drug Scene: Evidence from the Street.” International Journal of Drug Policy 13 (2002): 193–202. Altman, Lawrence. “U.N. Urges Tripling of Funds by ’08 to Halt AIDS.” New York Times, June 1, 2006, p. A6. Altman, Lawrence, and Elisabeth Rosenthal. “U.N. Strengthens Call for a Global Battle Against AIDS.” New York Times, June 3, 2006. Available at http://www .nytimes.com. Amin, Avni. Risk, Morality and Blame: A Critical Analysis of Government and US Donor Responses to HIV Infections Among Sex Workers in India. Washington, DC: Center for Health and Gender Equity, 2004. Available at http://www .genderhealth.org/pubs/AminHIVAmongSexWorkersinIndiaJan2004.pdf (accessed April 10, 2005). Angell, Marcia. The Truth About the Drug Companies: How They Deceive Us and What to Do About It. New York: Random House, 2004 Annan, Kofi. “Address to the African Summit on HIV/AIDS, Tuberculosis and Other Infectious Diseases,” Abuja, Nigeria, April 26, 2001. Available at http://www .healthnet.org/programs/e-drug-hma/e-drug.200104/msg00097.html. Attaran, A., and L. Gillespie-White. “Do Patents for Antiretroviral Drugs Constrain Access to AIDS Treatment in Africa?” Journal of the American Medical Association 286 (2001): 1886–1892. Attaran, Amir, and Jeffrey Sachs. “Defining and Refining International Donor Support for Combating the AIDS Pandemic.” Lancet 357, no. 9249 (January 6, 2001): 57–61. 299

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Wilson, Jennifer Fisher. “Building African AIDS Care from the Ground Up.” Annals of Internal Medicine 2 (July 15, 2003): 157–160. World Bank. “About the Multi-Country HIV/AIDS Program (MAP).” Available at http://www.worldbank.org/afr/aids/map.htm (accessed August 15, 2005). ———. Adult Health in Brazil: Adjusting to New Challenges. Washington, DC: World Bank, 1989. ———. “Battling HIV/AIDS: Bank Offers Practical Advice to Poor Countries to Widen Access to Life Saving Drugs,” press release, Bangkok, Thailand, July 13, 2004. ———. Confronting AIDS: Public Priorities in a Global Epidemic. New York: Oxford University Press, 1999. ———. “Difficult Health Policy Choices in a Severe AIDS Epidemic.” In Confronting AIDS: Public Priorities in a Global Epidemic, a World Bank Policy Report. New York: Oxford University Press, 1997. ———. Financing Health Services in Developing Countries: An Agenda for Reform. Washington, DC: World Bank, 1987. ———. “Highway to HIV/AIDS prevention,” November 25, 2003. Available at http:// www.worldbank.org. ———. “Project Appraisal Document on a Proposed Credit in the Amount of SCR 140.82 Million to India for a Second National HIV/AIDS Control Project.” Report no. 18918-IN, Washington, DC, 1999. ———. “Project Appraisal Document on a Proposed Credit in the Amount of SDR19.6 Million to the Republic of Ghana for a AIDS Response Project (GARFUND),” unpublished report, Accra, Ghana, December 8, 2000. ———. The World Bank’s Global HIV/AIDS Program of Action. Washington, DC: World Bank, 2005. World Health Organization. “A Commitment to Action for Expanded Access to HIV/ AIDS Treatment.” Available at http://www.who.int/entity/hiv/pub/prev_car/en (accessed June 20, 2003). ———. Globalization, TRIPS, and Access to Pharmaceuticals.” Policy Perspectives on Medicines, no. 3. Geneva, Switzerland: WHO, 2001. ———. “HIV/AIDS—Trucker’s Project: Delhi Gallery,” 2004. Available at http:// www.who.int/multimedia/indiaweb. ———. Sources and Prices of Selected Medicines and Diagnostics for People Living with HIV/AIDS. Geneva, Switzerland: WHO, 2004. ———. WHO Medicines Strategy. Geneva, Switzerland: WHO, 2004. World Health Organization and United Nations Joint Program on HIV/AIDS. “Global Access to HIV Therapy Tripled in Past Two Years, but Significant Challenges Remain,” press release. Available at http://data.unaids.org/pub/PressRelease/ 2006/20060328-PR-3by5_en.pdf?preview=true (accessed May 24, 2006). World Trade Organization. “Decision Removes Final Patent Obstacle to Cheap Drug Imports.” Available at http://www.wto.org/english/news_e/pres03_e/pr350_e.htm (accessed January 5, 2004). ———. Declaration on the TRIPS Agreement and Public Health. Doha, Qatar: World Trade Organization, 2001. Available at http://www.wto.org/english/thewto_e/ minist_e/min01_e/mindecl_trips_e.htm. Wren, Christopher S. “Struggling to Carve Out Common Ground, U.N. Tackles AIDS.” New York Times, June 24, 2001, p. A5. Wu, Zunyou, Keming Rou, and Haixia Cui. “The HIV/AIDS Epidemic in China: History, Current Strategies and Future Challenges.” AIDS Education and Prevention 16, no. 3 (2004): 7–17.

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———. “Acceptability of HIV/AIDS Counseling and Testing Among Premarital Couples in China.” AIDS Education and Prevention 17, no. 1 (2005): 12–21. Xia, Guomei, and Xiushi Yang. “Risky Sexual Behavior Among Female Entertainment Workers in China: Implications for HIV/STD Prevention Intervention.” AIDS Education and Prevention 17, no. 2 (2005): 143–156. Yang, Xiaobing. “China Launches Anti-Prostitution Campaign.” Beijing Review, November 11, 1991. Young, Oran. “Regime Dynamics: The Rise and Fall of International Regimes.” International Organization 36, no. 2 (1982): 277–297. Yu, Elena S.H., Qiyi Xie, Kongla Zhang, Ping Lu, and Lillian L. Chan. “HIV Infection and AIDS in China, 1985 Through 1994.” American Journal of Public Health 86, no. 8 (1996): 1116–1122. Zhang, K. L. and S. J. Ma. “Epidemiology of HIV in China: Intravenous Drug Users, Sex Workers, and Large Mobile Populations are High Risk Groups.” British Medical Journal 324 (2002): 803–804. Zhang, Qingfeng. “Reform the Reeducation-Through-Labor System in China.” Perspectives 5, no. 1 (March 31, 2004): 1–4. Zheng, Tiantian. “From Peasant Women to Bar Hostesses: Gender and Modernity in Post-Mao Darlian.” In On The Move: Women in Rural-to-Urban Migration in Contemporary China, edited by Arianne M. Gaetano and Tamara Jacka. New York: Columbia University Press, 2004. Zimmerman, Rachel, and Mark Schoofs. “World AIDS Experts Debate Treatment vs. Prevention.” Wall Street Journal, July 2, 2007. Zweifel, Thomas, and Patricio Navia. “Democracy, Dictatorship, and Infant Mortality.” Journal of Democracy 11, no. 2 (2000): 99–114.

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The Contributors

Michael J. Bosia is an assistant professor in the Department of Political Science, Saint Michael’s College, Vermont. Susanne Y.P. Choi is an assistant professor in the Department of Sociology at the Chinese University of Hong Kong. Joanne Csete is executive director of the Canadian HIV/AIDS Legal Network in Toronto, Ontario. Roman David is a politics research fellow in the Department of Public and Social Administration at the City University of Hong Kong. Paul G. Harris is professor of political science at Lingnan University, Hong Kong. Bernard Haven, formerly a McGregor Fellow in Ghana, received a master’s degree from the London School of Economics. André de Mello e Souza is professor of international relations at the Pontifical Catholic University of Rio de Janeiro, Brazil. Kristin M. Novotny is an associate professor in the Department of Political Science at Saint Michael’s College, Vermont. Amy S. Patterson is associate professor of political science at Calvin College, Grand Rapids, Michigan. Asia Russell is director for international policy at Health GAP in Philadelphia, Pennsylvania.

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THE CONTRIBUTORS

Benjamin Heim Shepard is assistant professor of social work at California State University, Long Beach. Patricia D. Siplon is an associate professor in the Department of Political Science at Saint Michael’s College, Vermont. Marika Vicziany is a professor and director of the Monash Asia Institute at Monash University, Victoria, Australia.

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Index

Abstinence, 69, 139, 253–254, 264, 277; Bush policy, 103, 171, 189, 218, 251, 259–260; India, 115, 128 Accelerated Access Initiative (AAI), 26, 212–215 Acquired immune deficiency syndrome (AIDS). See specific aspects ACT UP. See AIDS Coalition to Unleash Power Act Up Paris, 9, 17–18, 32, 155–167 passim Advocacy, 22, 157, 205, 208, 210, 227, 255; Brazil, 40, 225; Ghana, 75, 95; global 5, 11, 27, 38, 210; United States, 9, 172, 174–175, 178–179, 181, 184, 186, 192. See also Transnational advocacy networks Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS), 12, 47–49, 55, 118, 212–213, 215, 226, 228–230, 232–242, 268 AIDS. See specific aspects AIDS Coalition to Unleash Power (ACT UP), 9, 11, 32, 156, 160–161, 167–168, 177–180, 183–184, 186, 191, 205, 210, 213, 242; early actions, 27, 175–176 AIDS Widows of Tanzania (AWITA), 88–89, 96–99, 101–102, 104 Annan, Kofi, 18, 209, 216, 236 Antiretroviral therapy (ARV), 2, 10, 172, 180, 204, 209–210, 212, 215, 230–231, 232, 234–235, 273, 275, 276; affordability,y 12, 14, 49, 226–228; Brazil, 5, 38, 40–41, 46–48, 225–226; Ghana, 68, 69,

75–76, 78–79; India, 117, 188, 239–240. See also Azidothymidine; Efavirenz; Kaletra; Lopinavir; Protease inhibitors; Ritonavir ARV. See Antiretroviral therapy Autonomy, 6–7, 9, 20, 22–23, 87–104, 191, 208, 217, 257, 271 Azidothymidine (AZT), 27, 174, 233, 242, 257 AZT. See Azidothymidine Bisexuals, 12, 120, 177, 193, 247, 251, 255 Blood, 112, 137, 158–160, 162–164, 166, 172, 183, 237; products, 9, 17, 23–24, 162; transfusion, 23, 156, 184 Brazil, 5–6, 15, 26–28, 30, 37–56, 213, 225–227, 232, 234, 238, 241, 267–269, 274–275 Bush, George H. W., 177, 179 Bush, George W., 180, 182, 189, 208–209, 216, 235–236, 239–240, 251, 254–255, 260, 267, 270, 283, 285, 292; prevention strategy, 103, 189, 251; State of the Union 102, 171, 254 Centers for Disease Control and Prevention (CDC), 187–189, 194, 271 Charity, 31–32, 172, 278–279 Children, 1, 7, 23, 81, 88, 95, 98–101, 112, 116, 118–119, 121, 123–124, 129, 194, 214–215, 254, 265–266, 275; care of, 25, 92, 97, 99, 250, 252; orphans, 93, 100, 101, 119, 264, 266

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Cipla, 117–118, 213, 273 China, 8, 15, 41, 120, 129, 137–151, 209, 232–233, 250, 253, 260, 265 Clinton, William J., 179–180, 182, 189, 234–35 Clinton Foundation, 213–214 Coca-Cola, 25, 77, 214 Condoms, 14, 23, 25, 95, 97, 111–118, 121–129, 138, 142–143, 146–149, 183, 189, 249, 251, 255, 270; distribution, 8, 113, 118, 129, 143, 176, 247, 254; sex workers, 121–122, 127, 138, 142–143, 146–149 Country Coordinating Mechanism (CCM), 18, 68–69, 71, 74–75, 78, 80, 215–217 Criminalization, 148–150, 166, 182, 186–187, 250 Deaths from AIDS, statistics of, 1, 7, 17, 50, 117, 155, 227, 264 Declaration of Commitment on HIV/ AIDS, 210–212 Denver Principles, 30, 174–175 Discrimination, 2–3, 5, 8, 10, 26, 81, 99, 109–110, 112, 119–121, 127–128, 137, 149–150, 165, 204, 210, 248–251; gender, 6, 13, 87–88, 93–94, 99, 123, 249, 257; sexual minorities, 120–121, 125–126, 251 Doha Declaration, 49, 234–239 passim, 241–242. See also World Trade Organization Drug use, 3, 5, 8, 12, 22–23, 111, 130, 137–150, 162, 165, 176, 184–185, 188, 191, 194, 206, 210–211, 231, 247–248, 250–251, 253–254. See also Injection drug use. Efavirenz, 41, 44, 59 Empowerment, 7, 11, 20, 23, 25, 44, 93–94, 96, 101, 103–104, 207–208, 210, 264, 281. See also Power Ethics, 12–13, 117, 263–288 European Union, 12, 227, 238, 248, 268–269 Food and Drug Administration (FDA), 177, 190, 215, 232, 237, 269 France, 9, 17–18, 155–167

Gates Foundation, 49, 56 Gay men, 12, 55, 121, 128–129,182–185, 191–193, 205, 255; activism, 17, 39, 55, 114, 129, 155–164; stigma and discrimination, 14, 120–121, 126, 164, 247–248, 251–252 Gay Men’s Health Crisis (GMHC), 173, 186, 205 Gender, 6, 9, 11, 13, 22, 25, 67, 87–89, 93–97, 101, 120–123, 125–127, 156–157, 177, 183–184, 193, 204, 207, 210, 249, 251, 255, 257. See also Discrimination Generic drugs, 14, 78, 212–215, 219, 230–235, 237–240, 267–269, 273, 290; Brazil, 5, 28, 38, 41, 44, 46, 48–49, 55, 213, 225–226; India, 118, 213, 231, 239–240; United States, 12, 215, 227, 235, 238, 254 Ghana, 6, 65–81, 277; Ghana AIDS Commission (GAC), 68; Ghana AIDS Response Fund (GARFUND), 69–72, 74–76, 80–81; Ghana AIDS Treatment Access Group (GATAG), 66, 75–78, 80; Ghana HIV/AIDS Network, 71–76, 78, 80–81 Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM), 69–70, 78, 204, 208–210, 215–217 Global Program on AIDS (GPA), 205–208, 247 Globalization, 5, 37–56, 163–164, 166, 204, 212, 218, 227–228, 230, 242 Greater Involvement of People with AIDS, 208, 216–217 Harm reduction, 8, 138–139, 150, 177, 192 Health care, 28, 65, 100, 166, 189–190, 218, 225, 252, 267–268, 271, 274; Brazil, 5, 38–39, 50, 54, 56; Tanzania, 92–93, 95–97; United States, 10, 172, 175, 179–182, 189–91; workers, 68, 214, 215, 228, 266, 276–277 Health Global Access Project (Health GAP), 180, 210, 213, 267 Hemophilia, 17, 24, 67, 156, 159, 162, 291 Homosexuality. See Gay men

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Human immunodeficiency virus (HIV). See specific aspects Human rights, 10–13, 15, 22–23, 192, 206, 210, 212, 218, 247–257; activism, 39–40, 141, 180, 204; treatment access, 40, 48, 210, 225 India, 7–8, 15, 41, 109–130, 209, 213, 231–232, 236, 239–240, 250–251, 253, 255, 266, 273, 290. See also National AIDS Control Organization Injection-drug use, 5, 7, 23, 137, 139–140, 142–146, 173, 177, 185, 191, 210, 247–248, 250, 254–255, 259. See also Drug use Intellectual property rights (IPRs), 226–230, 236–237, 239, 241, 274. See also Agreement on Trade-Related Aspects of Intellectual Property Rights International AIDS Conferences, 205, 212, 231, 235 International Monetary Fund (IMF), 204, 217, 228, 277 International relations, 3, 20, 218, 263–288 passim Japan, 12, 28, 227, 238 Joint United Nations Program on HIV/AIDS (UNAIDS), 2, 8, 49, 55, 115, 137, 204, 207–209, 211–212, 217–218, 248–249, 253, 255, 264; creation, 11, 207; Ghana programs, 68, 71, 74–75, 80–81 Justice, social, 183–184, 252, 256–257 Kaletra, 225 Law enforcement, 8, 137–151. See also Police Lewis, Stephen, 29, 211 Liberalization. See Trade Lopinavir, 44, 46–47, 59, 225–226 Malawi, 17–18 Mann, Jonathan, 22, 205–206, 247–248 Meyers, Diana T., 87–88, 91–92, 100, 104 Multi-country AIDS Program (MAP), 204, 208. See also World Bank

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National AIDS Control Organization (NACO), 7, 110–111, 113–115, 127 National AIDS Control Program (NACP), 68, 78–79 Needle exchange, 142, 176, 179 Nongovernmental organizations (NGOs), 3, 40, 65–81 passim, 206, 211, 217 Pharmaceutical industry, 12, 30, 32, 46, 48, 190, 213, 231–232, 234–235, 237–239, 242, 267–268, 271, 274; Abbott, 44, 46, 60, 225–226; Burroughs Wellcome, 27, 242; Gilead, 44, 226; GlaxoSmithKline, 27, 78, 212, 233; Merck, 41, 44, 212; Pfizer, 222, 239, 268, 274; Roche, 41, 44, 212, 222 Piot, Peter, 209, 253, 255, 266, 275–276 Police, 8, 77, 109–110, 112, 114, 120, 125–129, 138–149, 188, 247, 250–252. See also Law enforcement Poverty, 3, 6, 22–23, 25, 87, 89, 93, 99, 103, 116, 118, 121, 166, 172, 178, 180, 206, 209–210, 227–228, 231, 265, 267, 280–281 Power, 1–9, 11–12, 15, 17–32, 41–44, 46, 54–55, 73, 79, 87, 90, 92–97, 100–101, 103–104, 110, 114, 129– 148, 151, 156–158, 167, 178, 181, 188, 190, 204–211, 214, 216–219, 226–227, 234–237, 240–243, 249, 251, 253, 257, 264–267, 277–278, 280–281, 283, 286; definition, 18, 19–22. See also Empowerment President’s Emergency Plan for AIDS Relief (PEPFAR), 204, 208, 214–216, 218, 270, 276 Prevention, HIV/AIDS, 14, 25–27, 29, 31–32, 102–103, 161, 188–189, 191–192, 206–207, 209, 210, 230–231, 247, 256, 259, 265, 273–275, 277, 284, 287; Brazil, 37–39, 48–50, 54, 57, 213; China, 138–140, 142, 143, 145, 146, 149–150; France, 160, 161, 163–164; Ghana, 65, 67, 69, 74, 77, 80; United States, 171, 174, 176–177, 182–184, 188–189, 191–192, 214, 218, 251, 254, 264, 270 Prisoners, 22–23, 165, 247

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Prostitution. See Sex work Protease inhibitors. 83 Regime, AIDS, 203–219 Ritonavir, 44, 46–47, 59–60, 225–226 Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, 79, 171–172, 177–178, 187 Sachs, Jeffrey, 29, 216, 276 Security: economic, 209; international, 15; national, 10–11, 128, 208–209, 218; social, 38, 172 Self-reliance, national, 5, 37–56 passim, 90 Sex work, 23–24, 94, 103, 164, 173, 181, 206, 210, 248, 253–254, 266, 277; China, 137, 138, 140–143, 146–150; India, 111, 116, 120–122, 123, 125, 127 South Africa, 7, 27, 30, 32, 40, 56, 66, 68, 77–79, 88, 110–111, 139, 150, 209, 212–213, 218, 234–235, 256, 267, 272–273. See also Treatment Action Campaign Stigmatization, 6, 8, 12, 22, 32, 40, 55, 68–69, 74, 81, 89, 99, 102, 116, 144, 149–150, 171, 174, 185, 188, 193, 208, 211, 247–250, 252 Suffering from AIDS, 1–6, 10, 13–15, 18, 23, 103, 257, 263–264, 266, 270, 272, 274, 276, 278–284, 287–288 Tanzania, 6, 17–18, 87–104 Thailand, 139–140, 206, 232, 234–235, 238–239, 267, 269 Trade, international, 10, 14–15, 26, 49, 66–67, 71, 74, 77, 172, 203, 207, 212–213, 225–242. See also Agreement on Trade-Related Aspects of Intellectual Property Rights; World Trade Organization Transgendered people, 120–122, 125–127, 177, 251, 255 Transmission, HIV, 18, 23, 31, 54, 122, 163–164, 174, 183–187, 247, 252, 254, 266, 269, 272, 287; mother to child, 23, 54, 69, 215, 257; sexual, 7, 23, 94, 111, 115, 123, 127, 137–138, 142. See also Condoms; Injectiondrug use

Treatment Action Campaign (TAC), 27, 32, 77, 209–210, 212 TRIPS. See Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) Tuberculosis, 39, 99, 117, 185, 217, 227, 275 Uganda, 25, 79, 101, 206, 251, 269–270, 272 UNAIDS. See Joint United Nations Program on HIV/AIDS UN General Assembly Special Session on HIV/AIDS (UNGASS), 11, 208–211, 214, 216–217, 248–256, 268. See also Declaration of Commitment United Nations, 11, 37, 48, 78, 203–219, 250, 255 United States, 50, 70, 120, 159–162, 218, 226–227, 229–240, 251–252, 254–255, 264, 276, 285, 292; activism, 27, 30, 40, 67, 156–157, 173–177, 205, 213; domestic policy, 9–11, 24, 26, 79, 139, 150, 171–172, 177–191; foreign policy, 12–14, 21, 28, 47–50, 55, 204, 206, 207–211 United States Agency for International Development (USAID), 49, 55, 70, 78, 271, 275 United States Trade Representative (USTR), 225, 234–235, 237–240 Utilitarianism, 13, 278–280 “Untouchables,” 15, 109, 120 Vulnerable populations. See specific groups Women, 3, 6–7, 13, 15, 29, 65, 71, 87–104, 111, 115–116, 121–123, 140, 143, 147, 161–162, 164–165, 175, 177, 185, 188–189, 204, 210–211, 215, 247, 253–254, 256–258, 265–266, 272, 280; disproportionate impact of HIV/AIDS, 25, 66, 81, 87, 93–96, 97–100, 116, 192, 204, 210, 249–250, 255; empowerment, 7, 20, 22, 25, 87, 89–92, 100–104, 175, 211 World Bank, 7, 27, 39, 49, 56, 69, 113, 204, 207–208, 212, 217, 255, 257,

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269, 272, 277. See also MultiCountry AIDS Program World Health Organization (WHO), 8, 11, 18, 37, 237, 269, 276, 241 World Intellectual Property Organization (WIPO), 229, 241

333

World Trade Organization (WTO), 12, 47–49, 56, 118, 212–213, 225–242 passim, 268 Zidovudine. See Azidothymidine Zimbabwe, 235–236, 272

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About the Book

With more than 40 million people living with HIV/AIDS—and more than 25 million dead from related diseases since the early 1980s—the need to understand the causes and impact of the pandemic is manifest. In response, The Global Politics of AIDS explores power and politics at multiple levels, ranging from individual behavior to corporate boardrooms to international institutions and forces. The authors combine careful scholarship with sensitivity to both the suffering of those afflicted and the frustration of those seeking to bring about meaningful change. All royalties from sales of the book will be donated to AIDS-related organizations. Paul G. Harris is professor of political science at Lingnan University, Hong Kong. He is the author or editor of seven other books on global politics. Patricia D. Siplon is associate professor of political science at Saint Michael’s College, Vermont. She is author of AIDS and the Policy Struggle in the United States and coauthor of Drugs into Bodies: Global AIDS Treatment Activism.

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