Patient Zero and the Making of the AIDS Epidemic
Page 7
investigation, differences which would hamper communication between
and among these groups.87 Kushner’s remarks and the laughter Curran’s
response elicited also express an acute uneasiness about the mobile na-
ture of the perceived threat and point to a classic public health dilemma:
How to balance the liberty of a sick individual against the community’s
presumed right to health?88 The story of “Patient Zero” would engender
strong views in this debate and raise questions about the role of crimi-
nal law in resolving this confl ict. It would also test the limits of how far
and how widely public health offi cials might be expected to share infor-
mation in the jet age, when individuals with transmissible disease might
swiftly and easily move between public health jurisdictions.
Writing a “Patient’s View” History
“He is a living man with Kaposi’s sarcoma. He is still out there.” With
these rather ominous words, Curran encapsulated the ambiguity and
fear surrounding Dugas, the man at the center of the “Patient Zero” nar-
rative. He was a patient who had not died quickly, who was still at large,
87. With the words “Holy mackerel,” Richard Mathias— a physician who worked during
the early 1980s as a consultant epidemiologist for British Columbia’s Ministry of Health—
later summed up the astonished response he shared with his heterosexual colleagues upon
learning how many partners this individual had reported. For him their surprise refl ected
how little they knew at the time about the sexual behaviors of the gay men they were study-
ing. He also suggested that, in retrospect, researchers’ early hypotheses were too often un-
derpinned by a desire to establish a notional safe distance between their own behaviors
and those of the gay men deemed at risk of developing AIDS; Richard Mathias, interview
with author, Vancouver, August 28, 2007, recording C1491/16, tape 1, sides A and B, Brit-
ish Library Sound Archive, London (hereafter cited as BLSA); emphasis on recording. All
such interviews are part of Richard A. McKay, 2007 and 2008, Imagining Patient Zero: In-
terviews about the History of the North American AIDS Epidemic, © Richard A. McKay
and The British Library, Reference C1491. A full list of interviewees appears in the ap-
pendix at the back of this book. All the recordings are archived in the BLSA as part of the
Oral History collections and can be accessed at the British Library, subject to any access
restrictions requested by interviewees and the author.
88. See Judith Walzer Leavitt’s exemplary work on this complex question, explored
through the life of “Typhoid Mary” Mallon: Typhoid Mary: Captive to the Public’s Health
(Boston: Beacon Press, 1996).
Introduction 31
and whose medical condition was becoming understood to be much
more dangerous than originally suspected. His case and initial cooper-
ation with researchers offered suggestive evidence to support an emerg-
ing consensus that AIDS was caused by a transmissible agent, and yet
there were not suffi cient data to convince him to change his behavior.
While Curran would go on to say that this man was simply one of many
who might be “carriers,” the fact that he had been singled out for men-
tion, and was “still out there,” undercut this notion.
At the heart of this book is the experience of a gay man, one of the
earliest persons identifi ed with AIDS in North America, whose own
voice has been silenced by particularly successful retellings of his story,
versions which are “still out there.” This book grounds the evocative
ideas of origins, carriers, and disease spreading with an account of this
man’s life and experience. Such an effort draws on a body of work in
the subfi eld of medical history that emphasizes the importance of con-
sidering “the patient’s view.” Epitomized by a 1985 article by Roy Por-
ter that extended the ambitions of 1960s and 1970s social history, this
trend sought to examine the physician– patient encounter from the pa-
tient’s perspective and urged historians to overcome the methodological
challenges posed by the bulk of the records documenting these encoun-
ters being written by practitioners.89 Porter has been criticized for focus-
ing too much on the doctor– patient relationship, at the expense of such
other individuals as nurses, technicians, and carers, who often play roles
in the medical encounter.90 Bearing this criticism in mind, the book at-
tempts to draw on a wider variety of sources, including Dugas’s friends,
colleagues, and health workers, in an attempt to provide a richer social
depiction of the early AIDS epidemic.
Guided by the work of queer, transnational, and medical historians,
Patient Zero blends archival research with oral history methods to artic-
ulate and analyze previously marginalized historical accounts. It incor-
porates evidence of a popular story’s transmission and reception beyond
American borders and actively addresses the challenge of locating the
patient’s view in a historical record largely constructed by health- care
89. Roy Porter, “The Patient’s View: Doing Medical History from Below,” Theory and
Society 14, no. 2 (1985): 175– 98. For an example of patient’s view history for “Typhoid
Mary” Mallon, see Leavitt, Typhoid Mary, 162– 201.
90. Flurin Condrau, “The Patient’s View Meets the Clinical Gaze,” Social History of
Medicine 20, no. 3 (2007): 533– 34.
32
chapter 0
workers. To counterbalance an abundance of accounts from physicians
and public health workers in the dominant narrative of the early AIDS
epidemic, I made a concerted effort to interview those identifying them-
selves as LGBT individuals, people living with HIV/AIDS, and acquain-
tances and coworkers of Dugas, using a combination of targeted and
chain- referral sampling. Research in LGBT and queer history has re-
lied heavily on the use of oral history interviewing, with many practi-
tioners aiming to address the manner in which these individuals have
been systematically excluded from large parts of the published record.91
These reminiscences were supplemented by interviews with key AIDS
physicians, public health workers, and the commissioner of the public
inquiry into the Canadian blood system. The book assembles primary
source material from public and private archives from across the United
States and Canada. Records of the CDC’s AIDS Task Force were exam-
ined to chart the evolution and consequences of the Los Angeles cluster
study that focused on the fl ight attendant. In addition, I analyzed Shilts’s
personal and professional papers— particularly the interview notes from
which he built his characterization of Dugas and the extensive press cov-
erage generated by Band— as well as records from community- based
AIDS organizations in New York, San Francisco, Toronto, and Vancou-
ver, and gay periodicals from across North America.92
The process of recovering, organizing, and presenting these varied
and far- fl ung sources— laborious and time- consuming in its own right—
also pres
ented some challenging ethical quandaries for a historian to
puzzle through, most relating to posthumous confi dentiality. To what ex-
91. John Howard, Men Like That: A Southern Queer History (London: University
of Chicago Press, 1999), 12– 13; Nan Alamilla Boyd, ‘Who Is the Subject? Queer Theory
Meets Oral History,’ Journal of the History of Sexuality 17, no. 2 (2008): 177– 89. This is a
well- established methodology in the history of medicine as well; see Nancy Tomes, “Oral
History in the History of Medicine,” Journal of American History 78, no. 2 (1991), 607– 17;
Paul Thompson and Rob Perks, An Introduction to the Use of Oral History in the History
of Medicine (London: National Life Story Collection, 1993). Of course, Randy Shilts was
himself an author whose work was primarily based on oral testimony.
92. The reporter’s interview notes form part of a large collection of his personal and
professional papers, bequeathed to the San Francisco Public Library after his death from
AIDS in 1994. The collection holds drafts for virtually all his writing, including journals,
early college compositions, reporting for the Advocate and San Francisco Chronicle, and research materials for his three books; Randy Shilts Papers (GLC 43), LGBTQIA Center,
SFPL (hereafter cited as Shilts Papers). All quotations from Shilts’s unpublished work ap-
pear with permission given by the Shilts Literary Trust.
Introduction 33
tent ought information shared by Dugas on his medical journey be held
in confi dence after his death? And, on a related note, if journalists be-
queath their records to public archives, as Shilts and others have done,
should the confi dence they provided to their sources during their life-
times extend beyond the grave?
The second question may be easier to resolve than the fi rst. Report-
ers’ privilege— the right for journalists to refuse to testify in legal pro-
ceedings to protect their anonymous sources— exists for a number of rea-
sons: to maintain the focus of a news organization’s staff and resources
on news gathering instead of responding to subpoenas; to protect jour-
nalists’ sources from retribution or embarrassment; and to clearly sep-
arate a free press from the government.93 Current legislation in the
United States focuses chiefl y on preventing living journalists from be-
ing forced to identify their sources during their lifetimes and pays little
explicit attention to any long- term duties of confi dence.94 This is not to
suggest that no one has contemplated the problems associated with post-
humous confi dentiality. In the forceful words of a British journalist and
media scholar, “Protecting a source is without qualifi cation. It should
never be given up— not to the editor or proprietor; not even after death.
Journalists should never identify confi dential sources on any traceable
record, without the knowledge and permission of their informant.”95 By
contrast, when an American reporter raised the alarm about federal
agents hunting for information about decades- old unauthorized disclo-
sures, his questions balanced concerns about deterring future sources
with the broader protection of the historical record. Would the agents,
seeking access to a recently deceased journalist’s fi les before they were
catalogued for archival use, rob historians of the fullest possible histor-
ical documentation and deprive the public of their right to learn about
the historical past?96 These examples may indicate a need for report-
ers to refl ect carefully on whether they wish to deposit their papers for
93. Reporters Committee for Freedom of the Press, The First Amendment Handbook,
7th ed. (Arlington, VA: Reporters Committee for Freedom of the Press, 2011), http:// www
.rcfp .org/ rcfp/ orders/ docs/ FAHB .pdf.
94. I have drawn this conclusion from a review of material posted on the Reporters
Committee for Freedom of the Press website, http:// www .rcfp .org.
95. Tim Crook, “Don’t Attack Gilligan for Doing His Job,” letter to the editor, Guard-
ian [London], September 9, 2003, https:// www .theguardian .com/ media/ 2003/ sep/ 10/ bbc
.guardianletters.
96. Mark Feldstein, “Not after Reporters . . . Just Their Sources,” News Media and
34
chapter 0
posterity. If they proceed, do they have a responsibility to protect the
identities of their sources and, if so, for how long? With regard to indi-
viduals named in Shilts’s publicly available records, my own approach
was a pragmatic one. Since this reporter recorded in his notes whether
a source wished to be identifi ed or not, it was possible for me to employ
pseudonyms for these individuals in my own book.
Returning to the initial question about Dugas’s medical information,
it is tempting, at fi rst, to respond that it should remain confi dential in its
entirety. To begin with, this stance accords with current ethical guidance
promoted in codes of medical and public health ethics: confi dentiality
is a fundamental value, and patients’ information should remain secret
even after they die.97 Health professionals work hard every day to pre-
serve the public’s trust in this confi dentiality when they discuss individ-
ual cases, removing personal identifi ers and using pseudonyms as a form
of protective code.
Yet at the heart of this book is a story of how one such code was bro-
ken. In many ways the story of Gaétan Dugas as “Patient Zero” is a per-
fect example of both the dangers of unauthorized disclosure of confi den-
tial information and the complexity of documenting this history. It also
draws focus to contradictory tensions at play in the 1980s, between pa-
tients wishing to preserve their privacy yet facing an increasing political
imperative to render their private struggles more visible to bring atten-
tion to a condition that many refused to see. In 1987 Randy Shilts pub-
licly identifi ed Dugas, four years after the man’s death, relaying infor-
mation about his having contracted and transmitted STIs and HIV and
intimating that he was deliberately trying to spread disease. The journal-
ist did so in part to focus national attention on the epidemic. When these
stories were widely repeated in subsequent reporting— reaching millions
of readers and television viewers within weeks— Dugas was explicitly
blamed for starting a continental epidemic and reached an almost un-
paralleled posthumous notoriety.
Dugas’s example points to the challenges of anonymizing unusual
the Law 30, no. 2 (Summer 2006), http:// www .rcfp .org/ browse - media - law - resources/ news
- media - law/ news - media - and - law - summer - 2006/ not - after - reporters - just - th.
97. See, for example, General Medical Council, Confi dentiality, October 12, 2009,
http:// www .gmc - uk .org/ static/ documents/ content/ Confi dentiality _ - _English _1015 .pdf;
and Lisa M. Lee and Christina Zarowsky, “Foundational Values for Public Health,” Pub-
lic Health Reviews 36, no. 2 (2015): 1– 9.
Introduction 35
cases. He had a rare, distinctive, and at times visible condition. He trav-
eled widely, actively participated in numerous co
mmunities, and inter-
acted with many sexual contacts and health workers. When interviewed
by CDC researchers, he agreed for his name to be shared with other re-
searchers as part of their investigations, and his example was much dis-
cussed among health professionals. Though there is no evidence his
name was used publicly, personal identifi ers linked to his case were
shared within suffi ciently small communities of early cases and health
workers. In essence, the clues were there to be tied together, waiting for
a reporter to decide that it was in the public interest to name names.
In addition to affecting forever the reputations of a dead man and his
surviving family members, Shilts’s actions threw up diffi culties for any
conscientious historian wishing to understand how this story had devel-
oped. By revealing “Patient 0” to be Dugas, sensitive information which
researchers had released publicly in coded terms before 1987 became in-
stantly linked to him. Internal CDC documents referring to individuals
by pseudonyms, which might otherwise have been shared relatively se-
curely to provide additional contextual details about the cluster study,
now risked further disclosures about a now- identifi able “Patient 0.” Tak-
ing a hard line on confi dentiality might mean preventing all unpublished
material that related to this man and the process by which he became
known as “Patient 0,” even if it was encoded, to remain forever closed to
historians and the public.
However, problems with this approach become readily apparent. Is it
not akin to shutting the barn door after the horses have escaped? If any-
one questioned, as many did, the way by which this individual took on a
role of importance in the history, crucial information for understanding
and critiquing this process would be lost. If his family wondered, as they
did in 1987, whether his identity had been disclosed through the leak-
ing of confi dential hospital medical fi les, their questions would remain
unanswered. Although the offi cial stance of the CDC for years was to
neither confi rm nor deny the identity of this individual, newspaper in-
terviews from both individual CDC investigators and Shilts confi rmed
that the code had been breached.98 Was Dugas now a public fi gure, per-