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
Patient Zero and the Making of the AIDS Epidemic Page 1