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The End of AIDS: Gender, Race and Class Politics in New York's Campaign to End the Epidemic

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The End of AIDS: Gender, Race and Class Politics in New York's Campaign to End the Epidemic City University of New York (CUNY) CUNY Academic Works All Dissertations, Theses, and Capstone Projects Dissertations, Theses, and Capstone Projects 9-2017 The End of AIDS: Gender, Race and Class Politics in New York's Campaign to End the Epidemic Lauren Suchman The Graduate Center, City University of New York How does access to this work benefit ou?y Let us know! More information about this work at: https://academicworks.cuny.edu/gc_etds/2341 Discover additional works at: https://academicworks.cuny.edu This work is made publicly available by the City University of New York (CUNY). Contact: [email protected] THE END OF AIDS: GENDER, RACE AND CLASS POLITICS IN NEW YORK’S CAMPAIGN TO END THE EPIDEMIC by Lauren K. Suchman A dissertation submitted to the Graduate Faculty in Anthropology in partial fulfillment of the requirements for the degree of Doctor of Philosophy, The City University of New York 2017 © 2017 LAUREN K. SUCHMAN All Rights Reserved ii The End of AIDS: Gender, Race and Class Politics in New York State’s Campaign to End the Epidemic by Lauren K. Suchman This manuscript has been read and accepted for the Graduate Faculty in Anthropology in satisfaction of the dissertation requirement for the degree of Doctor of Philosophy. Date Ida Susser Chair of Examining Committee Date Jeff Maskovsky Executive Officer Supervisory Committee: Murphy Halliburton Michael Blim Emily Martin THE CITY UNIVERSITY OF NEW YORK iii ABSTRACT THE END OF AIDS: GENDER, RACE, AND CLASS POLITICS IN NEW YORK’S CAMPAIGN TO END THE EPIDEMIC by Lauren Suchman Adviser: Professor Ida Susser Since its official discovery in 1981, the story of HIV/AIDS has been a story of inequality. Not only has the virus spread more easily among those marginalized due to their gender, race, or class, but AIDS activism itself has tended to elevate the voices and needs of the more powerful over those with less privilege. While we might point to 1981, when the CDC issued its first official report on HIV, as the official “beginning” of HIV/AIDS, where and how does the story end? This dissertation examines one attempt to bring the story to a close: New York State’s “Ending the Epidemic” campaign. Based on 14 months of ethnographic fieldwork (October 2014 – December 2015) throughout New York State, this dissertation draws on participant-observation and interviews with government officials, researchers, physicians, activists, and other advocates either directly involved in or affected by the campaign to answer the question: How do the fault lines of society come out at the "end"? In addressing this question, the study draws on the theoretical literature on social activism, knowledge creation and management, pharmaceuticals, and gender, race, and sexuality to examine how inequalities are either perpetuated or transformed in the context of Ending the Epidemic. It finds that, while many longstanding inequalities are still evident in the campaign, particularly concerning women and people of color, Ending the Epidemic has also served as an opportunity for some people representing historically marginalized groups to gain a stronger voice in the field. These include, most notably, men of color who have sex with other iv men. However, young people represent a group that is particularly vulnerable to HIV, but is not yet adequately engaged by Ending the Epidemic. Not having grown up with the fear of AIDS instilled in earlier generations and with little voice in high-level political platforms, young people present both a challenge and an opportunity for the Ending the Epidemic campaign to reach beyond the usual suspects and address under-recognized inequalities. v ACKNOWLEDGMENTS There are so many people without whom this dissertation never would have come to fruition that it is difficult to do them justice here. First of all, I thank those who participated in my research by giving their time and energy either in an interview, connecting me with others, sharing their thoughts off-hand, or all of the above. In particular, I thank Johanne Morne, Karen Hagos, and Kimberly Smith. I can never thank Jim Eigo enough for his wisdom and generosity of spirit. My adviser, Ida Susser, deserves much gratitude for shepherding me through the PhD process from the beginning and even before. Thank you for helping me to see the world in increasingly complex and nuanced ways over the years. I am also deeply grateful to my other dissertation committee members, Murphy Halliburton and Michael Blim, and my outside reader, Emily Martin, who have all inspired my thinking along the way and who provided valuable comments and enjoyable debate to bring this dissertation to its conclusion. I am similarly grateful to other colleagues at CUNY who helped me through the dissertation process both intellectually and emotionally. In particular, I thank Denis Nash and Abigail Lance-DeVos for opening so many doors for me at the fieldwork stage. And thank you, Abigail, for serving as a mentor in more ways than one. Gerald Creed and Ellen DeRiso made the Department of Anthropology run smoothly and helped me navigate CUNY bureaucracy from start to finish. Friends at the Graduate Center, such as Christopher Baum, Fabio Mattioli, Andreina Torres, Lydia Brassard, and Neil Aggarwal, provided much-needed emotional support, joy, and study buddy time along the way. Amy Kwan, you have been an invaluable friend and thought partner from day one. vi I gratefully acknowledge an Enhanced Chancellor’s Fellowship from the CUNY Graduate Center that financed my graduate work through the fieldwork phase. The Department of Anthropology provided additional financial support in the form of exploratory summer grants and a dissertation writing grant from the Graduate Center supported the final phase of this dissertation. Thank you to my close friends, many of whom I have known since childhood, for all of the support you have provided over the years. In particular, thanks to dear friends Ann Kapp, Nicole Forgoston, Sonia Szajnberg Sundelson, Laena Orkin-Prol, Caroline Massad Francis, Laura Rowntree, and Kate DePalma Lundberg. And, of course, I could not have gotten here without my incredible family. Thanks to: the Houseman and Spring clans; my aunt, Joan Cesare; and my grandparents, Roz and Iz Suchman, and Bill and Barbara Sandbach. My sisters, Morgan and Alexa Reed, know me better than anyone, and love and encourage me in spite of it all. My stepfather, Ted Reed, has been an unfailing rock. None of this would have been possible without my mom, Patricia Reed, who has believed in me and encouraged my dreams since I was very small. Finally I dedicate this dissertation to my father, James, the original Dr. Suchman. vii Table of Contents ABSTRACT .......................................................................................................................... iv ACKNOWLEDGMENTS ..................................................................................................... vi LIST OF TABLES AND FIGURES ..................................................................................... ix INTRODUCTION ................................................................................................................. 1 CHAPTER 1 Is the End of AIDS the End of Inequality? .................................................... 52 CHAPTER 2 The Implementation Phase: What Is “Community” and What Does It Do? . 81 CHAPTER 3 The Power of Data ....................................................................................... 111 CHAPTER 4 Mobilizing PrEP: A Marketable Product or a Healthcare Tool? ................ 148 CHAPTER 5 Who Should Be PrEPared: Gender, Sexuality, Race & Pharma ................. 194 CONCLUSION .................................................................................................................. 232 APPENDIX 1: LIST OF ACRONYMS .............................................................................. 246 BIBLIOGRAPHY .............................................................................................................. 247 viii LIST OF TABLES AND FIGURES List of Tables Table 1: Interviewees’ Professional Backgrounds 38 Table 2: Interviewee Demographics 39 List of Figures Figure 1. The New York State Ending the Epidemic Dashboard website 132 Figure 2. A “Swallow This” campaign poster 184 Figure 3. An image from the “Play Sure” campaign 202 ix INTRODUCTION Fred held my gaze steadily over his cup of coffee as he told me, “New York is a ghost town for us.” We were seated in a café across from Tompkins Square Park in the East Village and Fred, a prominent AIDS activist, was describing how the surrounding neighborhood was once a vibrant artistic community, much of which was wiped out by AIDS (a tale recounted by other artists, such as Patti Smith (2010)). Referring to himself and other AIDS activists who have been in the field for the past three decades, Fred suggested that they all carry the memories of friends and lovers with them, and that the work they carry out today still stems from the trauma of the early years of the epidemic. Indeed, hearkening back to those early years is a common refrain among activists who have been in the field a long time. At a recent “Hidden Histories” conference sponsored by the AIDS Coalition to Unleash Power (ACT UP), several speakers began their remarks with comments like “I’m standing here with a lot of people who are no longer here” and one noted, “For a long time, my days began with reading the obituary section of The New York Times…” In his opening speech to the
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