Patient Zero and the Making of the AIDS Epidemic

by Richard A. McKay

  Patient Zero and the Making

  of the AIDS Epidemic

  Patient Zero and the Making

  of the AIDS Epidemic

  r i c h a r d a . m c k a y

  the uni v ersi t y of chicago pr ess chicago and london

  The University of Chicago Press, Chicago 60637

  The University of Chicago Press, Ltd., London

  © 2017 by The University of Chicago

  All rights reserved. No part of this book may be used or reproduced in any manner

  whatsoever without written permission, except in the case of brief quotations in critical

  articles and reviews. For more information, contact the University of Chicago Press,

  1427 E. 60th St., Chicago, IL 60637.

  Published 2017

  Printed in the United States of America

  26 25 24 23 22 21 20 19 18 17 1 2 3 4 5

  ISBN- 13: 978- 0- 226- 06381- 2

  (cloth)

  ISBN- 13: 978- 0- 226- 06395- 9

  (paper)

  ISBN- 13: 978- 0- 226- 06400- 0

  (e- book)

  DOI: 10.7208/chicago/9780226064000.001.0001

  Bill Russell’s “Epitaph for the Sexual Revolution” is reprinted with permission from

  Samuel French, Inc.

  Portions of the research presented in this book fi rst appeared in Richard A. McKay, “‘ Patient

  Zero’: The Absence of a Patient’s View of the Early North American AIDS Epidemic,”

  Bulletin of the History of Medicine 88, no. 1 (Spring 2014): 161– 94, © 2014 The Johns

  Hopkins University Press.

  Interviews listed in the appendix are from Richard A. McKay, 2007 and 2008, Imagining

  Patient Zero: Interviews about the History of the North American AIDS Epidemic,

  © Richard A. McKay and The British Library, Reference C1491.

  Library of Congress Cataloging-in-Publication Data

  Names: McKay, Richard Andrew, 1978– author.

  Title: Patient zero and the making of the AIDS epidemic / Richard A. McKay.

  Description: Chicago : The University of Chicago Press, 2017. | Includes bibliographical

  references and index.

  Identifi ers: LCCN 2017018054 | ISBN 9780226063812 (cloth : alk. paper) |

  ISBN 9780226063959 (pbk. : alk. paper) | ISBN 9780226064000 (e-book)

  Subjects: LCSH: aids (Disease)—North America—History. | Epidemics—North America.

  | AIDS (Disease)—North America—Historiography. | Dugas, Gaétan, 1952–1984. |

  AIDS (Disease)—Patients.

  Classifi cation: LCC RA643.86.N7 M46 2017 | DDC 362.19697/920097—dc23

  LC record available at https://lccn.loc.gov/2017018054

  This paper meets the requirements of ANSI/NISO Z39.48– 1992

  (Permanence of Paper).

  what’s your name

  i’m not casting aspersions

  what’s your sign

  or condemning diversions

  what’s your disease

  just a prudent inspection

  to compare your infection

  i saw you standing there

  with mine

  pretty as you please

  and couldn’t help wondering

  i’m in no position

  which of these

  to judge your condition

  affl icts you:

  or condemn you

  and call you a sleaze

  sores around the mouth

  or further south

  but before we’re encased

  swelling of the joints

  in something debased

  or other points

  please tell me

  lesions or lumps

  what’s your disease

  blisters or bumps

  or feeling generally queasy

  Bill Russell, “Epitaph for

  from being too easy

  the Sexual Revolution,”

  Christopher Street,

  seems everyone has something

  December 1982

  and is avoiding something more

  from the saints among us

  to those who are hor-

  monally imbalanced

  and can’t get enough

  of that funky stuff

  Contents

  Acknowledgments ix

  List of Abbreviations xiii

  chap ter 0. Introduction: “He Is Still Out There” 1

  chap ter 1. What Came Before Zero? 42

  chap ter 2. The Cluster Study 77

  chap ter 3. “Humanizing This Disease” 139

  chap ter 4. Giving a Face to the Epidemic 186

  chap ter 5. Ghosts and Blood 246

  chap ter 6. Locating Gaétan Dugas’s Views 289

  Epilogue: Zero Hour— Making Histories of the North American

  AIDS Epidemic 354

  Appendix: Oral History Interviews 377

  Bibliography 379

  Index 419

  Acknowledgments

  I am greatly indebted to my funding agencies, without whose fi nancial

  support this work would not have been possible. These include the

  J. Armand Bombardier Foundation for an Internationalist Fellowship

  and the Wellcome Trust for a master’s studentship— both of which sup-

  ported the early stages of this research. The bulk of the project was made

  possible with a generous award from the Wellcome Trust (080651) and

  support from the University of Oxford’s Clarendon Fund. Travel awards

  from Green Templeton College, the American Association for the His-

  tory of Medicine, and the Canadian Society for the History of Medi-

  cine also helped enable me to visit North America for research trips and

  conferences. In addition, research fellowships from the Economic and

  Social Research Council (PTA- 026– 27– 2838) and the Wellcome Trust

  (098705) provided opportunities for further research and writing.

  For their early support and enthusiasm, I owe a great debt to Gareth

  Davies and Sloan Mahone. Their thoughtful questions and insightful

  feedback have improved this book immeasurably. At times when mat-

  ters appeared particularly bleak, their encouragement made all the dif-

  ference. Also heartening were discussions with Allan Brandt, Dorothy

  Porter, George Rousseau, Judith Leavitt, Virginia Berridge, Margaret

  Pelling, Pietro Corsi, Jason Szabo, Jacalyn Duffi n, Naomi Rogers, and

  John Harley Warner. For their wonderful early teaching that helped put

  me on this path, I will always be grateful to Betty Anne Rivers Wang

  and the late Jerry Falk in South Surrey, British Columbia.

  I would like to recognize the generous time and effort put in by each

  of my interviewees, whose trust and heartfelt reminiscences have en-

  riched my work tremendously. I hope that I have succeeded in represent-

  ing their views accurately and, where our interpretations have diverged,

  x

  Acknowledgments

  handled this with fairness and tact. I would like to thank Bill Darrow,

  Jean Robert, Joseph Sonnabend, Michael Brown, and Ray Redford for

  allowing me to consult copies of documents in their personal collections,

  and the siblings of Gaétan Dugas for granting me permission to quote

  from their brother’s correspondence. I must also thank the archivists

  and staff at th
e following archives and libraries for their time, patience,

  and assistance: Archives gaies de Québec; Bibliothèque et Archives na-

  tionales du Québec; the British Columbia Gay and Lesbian Archives

  (BCGLA); the Canadian Lesbian and Gay Archives (CLGA); Colum-

  bia University’s Center for Oral History Archives; the Gay, Lesbian, Bi-

  sexual, Transgender Historical Society; the John Hay Library; Library

  and Archives Canada; the Lesbian, Gay, Bisexual and Transgender

  Community Center National History Archive; the National Library of

  Medicine; the New York Public Library; ONE National Gay and Les-

  bian Archives at the USC [University of Southern California] Libraries;

  the Parish of Notre- Dame- de- L’Annonciation, Ancienne- Lorette; Ron-

  ald Reagan Presidential Library; San Francisco Public Library (SFPL);

  Sir James Dunn Law Library; the Toronto International Film Festival

  Group’s Film Reference Library; and the University of California– San

  Francisco (UCSF) Library and Center for Knowledge Management,

  Archives and Special Collections Division. Special mention must go to

  Alan Miller at CLGA; Josué Hurtado, formerly of UCSF; Ron Dutton

  at BCGLA; and Tim Wilson at SFPL for their exceptionally high level of

  assistance, as well as to the dedicated volunteer staff members at LGBT

  archives across North America, whose commitment to preserving and

  sharing records of the past are fundamentally important for historical

  endeavors like this one.

  My time at Oxford would not have been the same without the won-

  derful people at the Wellcome Unit (particularly Carol Brady and Be-

  linda Michaelides) and at Green— and later Green Templeton— College.

  I cannot imagine better- suited environments for carrying out several

  years of research and refl ection— particularly when fueled by the tre-

  mendous food and interdisciplinary collegiality of Green’s legendary

  lunches— and I will always feel fortunate to have lived and studied there.

  Out of this incredibly stimulating and welcoming community, a special

  thank- you is due to Pat Markus and her late husband Andrew for their

  ongoing guidance, support, and warm friendship. Mark Harrison and

  John Howard generously helped shape this book with their careful read-

  Acknowledgments xi

  ings of an earlier iteration, as did two anonymous reviewers for the Uni-

  versity of Chicago Press.

  This work has accompanied me through several institutional moves:

  from Oxford to King’s College London (KCL), and on again to the Uni-

  versity of Cambridge’s Department of History and Philosophy of Science.

  For my time at KCL I owe an enormous debt to Ludmilla Jordanova,

  for her attentive mentorship and inspirational historical practice. I am

  grateful as well for the friends and colleagues I met there, and for their

  contributions to my thinking: Katherine Foxhall, Keren Hammerschlag,

  Florence Grant, Rosemary Wall, Sophie Mann, Dennis Stathakopoulos,

  and Anne Marie Rafferty. At Cambridge, I feel lucky to have been able

  to share enjoyable and productive conversations about this research with

  Lauren Kassell, Nick Hopwood, Jesse Olszynko- Gryn, Dmitriy Myelni-

  kov, Andrew Buskell, Helen Curry, Chitra Ramalingam, Clare Griffi n,

  Margaret Carlyle, Sarah Bull, Stephen John, Anna Alexandrova, Lukas

  Engelmann, Tamara Hug, and the late John Forrester. More generally,

  my collegial thanks go to Claire Jones, Sally Sheard, Flurin Condrau,

  Anne Kveim Lie, Gayle Davis, Gerard Koskovich, Matthew Weait, Har-

  old Jaffe, and Michael Worobey. Their questions, feedback, and encour-

  agement have made this work much stronger; any errors that may remain

  are my own responsibility.

  I am grateful for thought- provoking comments and questions from

  copanelists and audience members at a whole host of seminars and con-

  ference presentations between 2007 and 2014, including seminars and

  symposia at Oxford’s Green College and the Wellcome Unit, and at

  Cambridge, Warwick, Liverpool, Exeter, KCL, UCSF, and Concordia;

  conference panels hosted at the meetings of the Canadian Society for

  the History of Medicine, the American Association for the History of

  Medicine, the Society for the Social History of Medicine, the European

  Association for the History of Medicine and Health, the Committee on

  Lesbian, Gay, Bisexual, and Transgender History of the American His-

  torical Association, at the 80th Anglo- American Conference of Histori-

  ans, and the wonderful group assembled for We Demand: History / Sex /

  Activism in Canada; as well as community presentations in Toronto

  and San Francisco. Traveling for research and presentations meant that

  I frequently needed to fi nd a place to sleep, so warm thank- yous go to

  the Welshes, the Kowalczyks, the Walters, the Brodskys, Jen Coens

  (and roommates), Vic and Ginevra Syperek, Lila McDowell and Lynn

  xii

  Acknowledgments

  Crimando, Kate Mannle, Paul Gedye, Jeffrey Lancaster, and Lynne

  LeBlanc for offering me welcoming places to stay over the years. At the

  University of Chicago Press, I’m grateful to Doug Mitchell for believing

  in this project from the early stages and for his wonderfully encouraging

  and edifying e- mails; to Kyle Wagner, Tim McGovern, Yvonne Zipter,

  Kathleen Raven, and Ashley Pierce for their assistance in shepherd-

  ing the book from submission through production and beyond; to Lori

  Meek Schuldt for her insightful copyediting work; to Isaac Tobin for de-

  signing a stunningly evocative cover; and to Jan Williams for her efforts

  in compiling the index.

  My family and friends have been a source of encouragement, humor,

  and perspective throughout this long project—

  one which could have

  lasted twice as long if Mum had not generously and tirelessly transcribed

  the interviews with total discretion. I thank Mum, Dad, Blythe, Susan,

  Mark, Chris, Sue, Giles, Antoinette, Isabella, and Enya and Zelda for

  their love, patience, and support. My work and I have particularly ben-

  efi ted from friendship and conversations— AIDS- related and not— with

  many people, including Erica Charters, Henry Meier, Simon Pooley,

  Phil Tiemeyer, Tamson Pietsch, Jamie Salo, Anders Krarup, Mandisa

  Mbali, Rebecca Hodes, Lauren Brodsky, Jackie Cheng, Will Motley,

  Dave Bagby, Tyler and Erie Lane, Aaron and Julia Morinis

  Orkin,

  Mari Webel, Paul Steinberg, Lindsey Richardson, Sophie Walker, Anna

  Renou, Pete Goult, Madeline Fowler, Charles Laurie, Rebekah Bras-

  well, Ben and Fiona Irving, Jenn De Lucry, Christine Dandy, Jocelyn

  Parr, Angela Danyluk, Keri Laughlin, Derek and Samantha Creech, and

  Josh Raymond. Kate Mannle’s assistance with image research was in-

  valuable, as were the skilled translating efforts of Leila Merouchi and

  A. Landry. Crucially, Theo Raymond has provided common sense, a

  keen reader’s eye, a much- needed ability to fi nd humor, and unfaltering

  love since the project’s inception— I would not have been able to com-

  plete this project without him in my corner.

  Thank you, all.

  Abbreviations


  ACT

  AIDS Committee of Toronto

  ACT[- ]UP

  AIDS Coalition to Unleash Power

  AID

  Acquired Immune Defi ciency

  AIDS

  acquired immune defi ciency syndrome, also called

  acquired immunodefi ciency syndrome

  APA

  American Psychiatric Association

  ARV AIDS-

  related

  virus

  ASO

  AIDS Service Organization

  Band

  And the Band Played On

  BAR

  Bay Area Reporter

  BCGLA

  British Columbia Gay and Lesbian Archives

  CAJ

  Canadian Association of Journalists

  CAS

  Canadian AIDS Society

  CBC

  Canadian Broadcasting Corporation

  CDC

  Centers for Disease Control

  CEH

  Center for Environmental Health

  CID

  Center for Infectious Diseases

  CIJ

  Centre for Investigative Journalism

  CLGA

  Canadian Lesbian and Gay Archives

  CMV cytomegalovirus

  CPS

  Center for Prevention Services

  EIS

  Epidemic Intelligence Service

  EPO

  Epidemiology Program Offi ce

  GMHC

  Gay Men’s Health Crisis

  GRID

  gay related immune defi ciency

  HAART

  highly active antiretroviral therapy

  HIV human

  immunodefi ciency virus

  xiv

  Abbreviations

  HLTV- III

  human T- cell lymphotropic virus type III

  IV intravenous

  KCL

  King’s College London

  KS Kaposi’s

  sarcoma

  KS/OI

  Kaposi’s sarcoma and opportunistic infections

  LAV lymphadenopathy-

  associated

  virus

  LCDC

  Laboratory Centre for Disease Control

  LGBT

  lesbian, gay, bisexual, and transgender/transsexual

  MMWR

  Morbidity and Mortality Weekly Report

  NAC- AIDS

  National Advisory Committee on AIDS

  NCAB

  National Cancer Advisory Board

  NCI

  National Cancer Institute

  NIH

  National Institutes of Health

  NYN

  New York Native

  NYU

  New York University

  OI opportunistic

  infection

  OPV

  oral polio vaccine

  ORTEP