mitting some of his physicians to speak publicly about their interactions
98. “‘First AIDS Patient’ Story Dismissed,” Gazette [Montreal], October 17, 1987, A3;
Duncan Campbell, “Shilts Theory Is Nonsense!” Capital Gay, March 4, 1988, 1, 4; Duncan
Campbell, “An End to the Silence,” New Statesman, March 4, 1988, 22–23. According to a
36
chapter 0
with him? As readers will see, some doctors would denounce him as a
sociopath or use his actions as a way of justifying their own ethically
dubious behavior. Or were other doctors, who revealed confi dential de-
tails about him when speaking more cautiously in his defense, relying
on the fact that much time had passed since his death and that far more
damning accusations had long been in the public domain? Or, perhaps,
were they abiding by another long- standing guideline for medical con-
duct: if in doubt, choose a course of action that will benefi t the patient or
protect his interests?99 If so, do a patient’s interests extend to the after-
life? Historians of medicine have adopted a number of approaches to
this question when dealing with patients whose names are not already
widely known. Many have taken steps to disguise individuals’ identities;
others, however, have justifi ed identifying patients on the basis of giving
them voice and agency and viewing anonymization as risking the perpet-
uation of stigma and marginalization.100 In practice, it seems that histori-
ans’ decisions on how to proceed are rooted in the complex specifi cities
of their source material.101
One is on fi rmer ground when one recognizes the privacy interests of
surviving relatives and those who had a relationship with the deceased
patient.102 Learning early in my research about the scrutiny Dugas’s fam-
ily had faced in the media, I wished initially not to disturb them at all.
When it became apparent that my project had grown beyond a master’s
dissertation, it occurred to me that by not alerting them to my research,
I might unintentionally re- create the circumstances of their shock at the
letter Campbell sent to Bill Darrow in March 1988, he based his claim about death threats
faced by the Dugas family on reports in the British press; William W. Darrow Papers, Miami.
99. Gerald L. Higgins, “The History of Confi dentiality in Medicine: The Physician–
Patient Relationship,” Canadian Family Physician 35 (April 1989): 921– 26, 14.
100. David Wright and Renée Saucier, “Madness in the Archives: Anonymity, Ethics,
and Mental Health History Research,” Journal of the Canadian Historical Association 23,
no. 2 (2012): 65– 90.
101. Susan C. Lawrence, Privacy and the Past: Research, Law, Archives, Ethics (New
Brunswick, NJ: Rutgers University Press, 2016), 89– 114.
102. In 2013, the Final Rule for the Health Insurance Portability and Accountability
Act (HIPAA) suggested that, in most cases, fi fty years struck the right balance between
these privacy concerns and wider interests; US Department of Health and Human Ser-
vices, “Modifi cations to the HIPAA Privacy, Security, Enforcement, and Breach Notifi -
cation Rules under the Health Information Technology for Economic and Clinical Health
Act and the Genetic Information Nondiscrimination Act; Other Modifi cations to the
HIPAA Rules; Final Rule,” Federal Register 78, no. 17 (2013): 5613– 14.
Introduction 37
1987 revelations, about which they had received no prior consultation
from Shilts or his publisher. After seeking guidance from senior histo-
rians, I sent a letter in 2008 explaining my research project and inquir-
ing whether the family wished to participate. A polite, brief, and fi rm an-
swer to a follow- up inquiry two months later made the family’s position
of noninvolvement clear. This respectful distance remained in place un-
til an article I wrote was accepted for publication in 2013. In it I quoted
extensively from a letter shared with me by one of Dugas’s former lov-
ers, one of the few known surviving documents in the fl ight attendant’s
hand. Copyright law requires permission from a letter’s author or his or
her heirs to reproduce more than a few words from such a document. I
paid for my article to be professionally translated into French and sent it
to the family, along with a copy of the letter and a photograph of Dugas
from his former lover. From that point, a series of letters and phone calls
with Dugas’s surviving family members established a cautious and cor-
dial relationship. They eventually granted permission for me to publish
quotations from Dugas’s letter and photographs of him, reaffi rmed their
clear wishes to remain undisturbed by journalists, and expressed grati-
tude at the possibility of rehabilitating their younger brother’s memory.
Discussing this material more than thirty years after his death brings
with it some challenging decisions about disclosure. Ultimately, given
the highly unusual circumstances of Dugas’s case, it seems very unlikely
that my discussion of his confi dential information risks weakening the
prevailing commitment of historians to preserve patient confi dential-
ity. Furthermore, given the monumental damage Dugas’s reputation
suffered in 1987, it seems highly unlikely that any additional release of
information could worsen his posthumous memory or create deeper in-
trusions into the family’s privacy, although, there remains the possi-
bility of drawing continued attention to a controversy that they would
prefer to leave to rest. There is, on the other hand, a much stronger like-
lihood that articulating this history will— without removing all traces of
bad feeling— promote greater understanding and allow the chance for
his surviving family members, friends, and lovers to achieve some sense
of closure. Bearing this in mind, I have attempted to observe a respect-
ful distance of the family’s domestic sphere, exercised restraint over de-
tails that might be deemed prurient, and granted the family veto rights
over certain stories and the reproduction of personal images.
Who gets to name? How do they see the world? How do they repre-
sent what they see? To whom? A resolute belief in the importance of
38
chapter 0
these questions and the impact they have on the practices of making sci-
ence and writing history moves me to place myself, as this book’s author,
more explicitly into the frame. Like all other knowledge creators, I bring
to this book my own subjectivity, a particular worldview shaped by my
own historically situated experiences, which in turn has infl uenced— at
some levels consciously, and at other levels less so— the history I have
written. 103 As a white, middle- class teenager coming of age in the 1990s
in a suburban city near Vancouver, Canada, my understanding of sex-
ual contact was always informed with an awareness of the risks of HIV
and other sexually transmissible diseases. Less clear to me, at that time,
was my own sexuality, which, by the time that I neared the completion
of my undergraduate degree at the University of British Columbia, was
; urgently pressing me to acknowledge that I was attracted to other men.
Though remaining closeted to friends, colleagues, and family members,
I began a sexual relationship with a handsome male graduate student I
met at one of Vancouver’s few gay night clubs. Shortly thereafter, hav-
ing imbibed the message that responsible sexual health rested upon reg-
ular testing for STDs, we went together for what I had assumed to be a
regular checkup at a local community- based gay health clinic. My as-
sumption proved to be incorrect when the results returned: the commu-
nity nurse, after asking whether I thought that I might, in fact, be HIV-
positive, informed me that the test indicated that I had contracted HIV.
My new partner tested negative.
Three very stressful months of further tests and much waiting even-
tually confi rmed that I had been the recipient of a false- positive diagno-
sis. My initial result, an indeterminate combination of a positive screen-
ing test and a negative confi rmation test, raised the possibility that I had
been recently infected and had not created enough antibodies to be read
by the confi rmation test. As time and further testing proved, a far less
likely scenario had occurred. I was one of a very small percentage of
individuals whose blood cross- reacted with the highly sensitive ELISA
screening test. Though I had not been exposed to HIV, my blood yielded
a falsely positive test result.
This experience, at the age of twenty- two, was profoundly transfor-
103. For a call to historians to be aware of “our own historicity” and to embrace more
self- refl exive modes of practice, see Roger Cooter with Claudia Stein, Writing History in
the Age of Biomedicine (New Haven, CT: Yale University Press, 2013), x.
Introduction 39
mational on a personal level. At the time of my diagnosis— despite it tak-
ing place in the same city where only a few years earlier the announce-
ment of new therapy regimes had heralded a transformation of the
disease— my mind conjured up older and more resilient notions: HIV
leading to early death, infection with the virus as a consequence of gay
sex. Spending several months thinking of myself as HIV- positive sensi-
tized me to fears of dying young and social rejection, to a sense of self-
pollution, and to a radically diminished sense of self- worth. Though in
retrospect I can see that I faced these challenges from a position of rel-
ative social and economic privilege, the experience often seemed over-
whelming at the time. It shattered my previously untroubled confi dence
in scientifi c progress and medical authority and introduced a far more
critical engagement with the media’s representations of disease. Not long
after this experience, I read And the Band Played On for the fi rst time
and became transfi xed by Shilts’s accounts of the 1980s medical and so-
cial struggles that forged subsequent understandings of the disease. I
was also seduced by his dark depiction of the fl ight attendant who had
spent the last year of his life in my hometown. The sixteen years in be-
tween this triggering personal incident and my completion of my own
book have seen me relocate to the United Kingdom for further study
and research, with a signifi cant amount of that time spent grappling with
the multifaceted story of “Patient Zero.” A commitment to exposing the
ways in which knowledge is created— particularly in a work that uses bi-
ography as a contextualizing explanatory tool— means that it is impor-
tant that readers be aware of this background. No scientifi c or historical
account is neutral, nor any author objective, though these caveats do not
foreclose a rigorous commitment to honesty and truth.
The idea of “Patient Zero” developed as part of an ongoing pro-
cess in which scientifi c research was imagined, represented, and shaped
through words, stories, and images that carried a legacy of cultural as-
sumptions about disease, origins, and sexuality. As this book demon-
strates, this idea was disseminated and sustained by four key trends: a
broad societal need to imagine and then seek a simple explanation and
source for complex patterns of contagion; the unintended consequences
of hypotheses and decisions made by scientifi c and medical researchers
who investigated the epidemic; tense divisions within the affected gay
communities, where one response to the intense blame from without was
to assign blame within; and a sensation- seeking media culture. Many
40
chapter 0
during this period— individuals and groups, gay and straight— found that
the idea of “Patient Zero” offered them something useful: something
to explain with, to entice with, or to fi ght against. In its perceived util-
ity, widespread fl exibility, and remarkable longevity, the tale of “Patient
Zero” has played an important part in shaping the scientifi c and popular
understandings of the North American HIV/AIDS epidemic and later
disease outbreaks. In this regard one could also say that, in many ways,
he is still out there.
Readers interested in the long historical background to these trends
should continue to chapter 1 for a detailed examination of the constitu-
ent parts of the “Patient Zero” story, one which helps explain the full
power of their eventual combination. Those more keen to learn about the
CDC’s early AIDS research and the mid- twentieth- century forces shap-
ing it might prefer to proceed directly to chapter 2. Chapters 3 and 4 of-
fer a detailed examination of the process by which Randy Shilts came to
write And the Band Played On and how the book was promoted and re-
ceived by audiences across North America in the late 1980s. The book’s
fi nal pair of chapters pay particular attention to the Canadian side of this
history. Chapter 5 draws an extended comparison between the produc-
tion of John Greyson’s musical fi lm Zero Patience (1993) and the curious
resilience of interest in Gaétan Dugas’s role as “Patient Zero” during
the 1990s in a commission of inquiry investigating the country’s blood
system. Chapter 6 pays close attention to the lived experience of Dugas,
seeking to counterbalance the sensational coverage the fl ight attendant’s
life received in And the Band Played On and subsequent reports.
The Los Angeles cluster study and its “Patient 0” were signifi cant in
the early 1980s for making sense of how some of the earliest then rec-
ognized cases of AIDS fi t together and for demonstrating the hypothe-
sis that the condition was caused by a sexually transmissible agent. This
explanation, in turn, was key to focusing research and resources in the
years that followed. When it was resurrected, rechristened, and redis-
tributed in 1987, the story of “Patient Zero” was essential, to many ob-
servers, for understanding how AIDS had arrived in North America
and, to some, for deciding whom to blame, despite the many questions
which had begun to unsettle the hypotheses that held the threads of the
story together. Rewriting the by- then widely accepted and understood
>
defi nition of “Patient Zero” would have meant unsettling that certainty
and opening the door to a world of far greater complexity. In many ways
Introduction 41
and in many settings— in public health, in the media, and in wider public
consciousness— “Patient Zero” was a foundational idea in the making of
the North American AIDS epidemic. It is my hope that the history I re-
late in the following pages will prevent this idea from being applied un-
critically to future disease outbreaks.
Chapter One
What Came Before Zero?
In a book about AIDS fi rst published in 1984, Dr. Alvin Friedman-
Kien, a New York dermatologist and virologist, reminisced about at-
tempts that he and his colleague, Dr. Linda Laubenstein, had made in
1981 to locate an individual of interest to their investigations of the new
disorder:
One of these men, who had died, had had sex with a man who had KS, and
who traveled a lot for a Canadian company. Call him Erik. Someone else also
knew that Erik had lived in a house on Fire Island where three men had died.
So I said, “We’ve got to get hold of him.” Linda said she’d tried to reach him
but he’d moved. . . . Then I was asked by Marc Conant and Bob Bolan to go
out to the fi rst meeting of the Physicians for Human Rights in San Francisco
[in June]. . . . I went out, gave my talk, then sat down to listen to some of the
other talks. A doctor came over to me and said, “I have a date tonight with
a Canadian who has Kaposi’s sarcoma. Do you think it’s okay for me to go
to bed with him?” I just stared at him, then said, “Is it a man named Erik?”
“Yes,” he said, “do you know him? Isn’t he a beauty!” I almost fell off my
seat. I said, “Could you do me a favor? Give him my hotel number and tell
him to call me. Or, if he can’t do that, to contact me in New York in my of-
fi ce.” I went back to the hotel and called Linda and said, “Linda, I’ve located
our Typhoid Mary.”1
1. Ann Giudici Fettner and William A. Check, The Truth about AIDS, rev. ed. (New
York: Henry Holt, 1985), 85. Crimp cites this recollection in “How to Have Promiscuity in
an Epidemic,” in Crimp, AIDS, 245. The Bay Area Physicians for Human Rights confer-
ence, which coincided with the San Francisco Gay Freedom Day Parade, drew gay physi-
Patient Zero and the Making of the AIDS Epidemic Page 8
