Patient Zero and the Making of the AIDS Epidemic
Page 5
seven languages and released in sixteen countries.57 There is no ques-
tion that Shilts saw himself as writing history, and the impact of the book
52. For example, Robert M. Swenson, “Plagues, History, and AIDS,” American
Scholar 57, no. 2 (Spring 1988): 183– 200; Guenter B. Risse, “Epidemics and History: Eco-
logical Perspectives and Social Responses,” in Fee and Fox, AIDS: Burdens of History,
33– 66.
53. For a sense of this shift, compare the titles and contents of two edited volumes
of historical essays by Elizabeth Fee and Daniel M. Fox: AIDS: The Burdens of History
(Berkeley: University of California Press, 1988) and AIDS: The Making of a Chronic Dis-
ease (Berkeley: University of California Press, 1992).
54. Virginia Berridge and Philip Strong, “AIDS and the Relevance of History,” Social
History of Medicine 4, no. 1 (1991): 129– 38; Virginia Berridge, “The History of AIDS,”
AIDS 7, Suppl. 1 (1993): S243– 48. See also Howard Markel, “Journals of the Plague Years:
Documenting the History of the AIDS Epidemic in the United States,” American Journal
of Public Health 91, no. 7 (2001): 1025– 28.
55. “The Most Memorable Books of the Last 25 Years,” USA Today, April 9, 2007,
http:// www .usatoday .com/ life/ top25 - books .htm.
56. Books That Shaped America (Washington, DC: Library of Congress, June 25,
2012), exhibition catalog, https:// www .loc .gov/ exhibits/ books - that - shaped - america/ overview
.html.
57. Biography of Randy Shilts, n.d., p. 1, Randy’s Bio, Carton 2/5, Linda Alband Col-
lection of Randy Shilts Materials (hereafter Alband Collection), 2003– 09, accretion 1 of 2,
Introduction 19
and of its construction of “Patient Zero” on popular consciousness was
signifi cant.58
Other historians would draw on Shilts’s pioneering work. Mirko
Grmek, a Croatian- French physician and historian, wrote his History of
AIDS (1990), a scholarly account of the epidemic, in the middle of the
fi rst phase of the crisis. Grmek sought to place the pandemic in a long-
term ecological context of disease environments and emergence. Grmek
spoke with interest about the CDC’s Los Angeles cluster study and of
Gaétan Dugas, seeing the fl ight attendant as “both an example and a
caricature.” Though he expressed skepticism about whether Dugas had
brought the disease to the United States, Grmek wrote that the fl ight at-
tendant had “sown the disease and death all along his route, at the rate
of about 250 partners per year.” Citing only Shilts’s book as a source,
the historian surmised of Dugas that “a kind of deaf rage against fate
had seized him, a desire for vengeance. In a medical interview, he had
shamelessly declared, ‘I’ve got it; they can get it too.’ Every historian of
disease knows that such an attitude of vengeance, or at least of reckless-
ness, had contributed in other times to the spread of tuberculosis and
syphilis.”59 This book examines some of the historical precedents to this
story to question Grmek’s straightforward suggestion that deliberate dis-
ease spreading played a signifi cant role in earlier epidemics.
Another historian, Peter Baldwin, later undertook an impressive
comparative analysis of the public health responses to AIDS in fi ve
resource- rich countries: the United States, Britain, France, Germany,
and Sweden. In Disease and Democracy, Baldwin argued that the ac-
tions taken by different countries could not be predicted based on their
politics but rather depended on paths taken in responding to epidemic
disease in previous centuries. Dugas garners two mentions in Bald-
win’s piece, references which point to a weakness of this otherwise very
strong work. Baldwin relied— of necessity, given the broad scope of his
San Francisco Gay, Lesbian, Bisexual, Transgender Historical Society. Alband was Shilts’s
business manager during the last fi ve years of Shilts’s life.
58. Said one oral historian of Shilts’s history: “Like every author of an AIDS book, I
read And the Band Played On fi rst”; see Benjamin Heim Shepard, White Nights and As-
cending Shadows: An Oral History of the San Francisco AIDS Epidemic (London: Cas-
sell, 1997), 250.
59. Mirko D. Grmek, History of AIDS: Emergence and Origin of a Modern Pandemic,
trans. Russell C. Maulitz and Jacalyn Duffi n (Princeton, NJ: Princeton University Press,
1990), 18– 19.
20
chapter 0
project— on published materials and, like Grmek, based his assessment
of Dugas on Shilts’s book. Baldwin’s fi rst description of Dugas— “the
epidemic’s Typhoid Marvin . . . the spectacularly promiscuous and con-
scienceless airline steward who disseminated HIV transcontinentally”—
served for the author as one example of “cases that most would agree de-
served censure.” The second reference was to suggest that “knowledge
of [one’s] serostatus appeared to have an ambiguous effect. Devil- may-
care conduct was not unheard of. Gaetan Dugas, the French Canadian
airplane steward immortalized by Randy Shilts as Patient Zero in And
the Band Played On, refused to change his globally transmissive behav-
ior or to warn his partners.”60 This book will demonstrate the tenuous
nature of these recirculated claims.
The chapters that follow interweave the development and transmis-
sion of ideas about AIDS across North America. This transnational ap-
proach is partly in response to a tendency in the existing historiography
to focus on the United States at the expense of attention to the Cana-
dian experience.61 Despite the widely noted divergences in their health-
60. Peter Baldwin, Disease and Democracy: The Industrialized World Faces AIDS
(Berkeley: University of California Press, 2005), 90, 127. Dugas did not have the benefi t of
a blood antibody test to learn his serostatus, as this diagnostic tool was not developed un-
til after his death.
61. Scant work on the history of the AIDS epidemic in Canada exists, a lacuna noted by
several observers: Derek G. Steele, “The Evolution of the Canadian AIDS Society: A So-
cial Movement Organization as Network, Coalition and Umbrella Organization” (DPhil
thesis, McGill University, 2000), 27; Mark L. Robertson, “An Annotated Chronology of
the History of AIDS in Toronto: The First Five Years, 1981– 1986,” Canadian Bulletin of
Medical History 22, no. 2 (2005): 314. Jacalyn Duffi n’s concise 1994 article is one of the
few offerings from a historian: “AIDS, Memory and the History of Medicine: Musings on
the Canadian Response,” Genitourinary Medicine 70, no. 1 (1994): 64– 69. One of the most
useful and comprehensive accounts is Ivan Emke, “Speaking of AIDS in Canada: The
Texts and Contexts of Offi cial, Counter- Cultural and Mass Media Discourses Surround-
ing AIDS” (DPhil thesis, Carleton University, 1991). Political scientists have provided an
analysis of the limitations of the federal government’s response and outlined the reactions
in the country’s three largest cities: Vancouver, Toronto, and Montreal: David M. Rayside
and Evert A. Lindquist, “Canada: Community Activism, Federalism, and the Ne
w Politics
of Disease,” in AIDS in the Industrialized Democracies: Passions, Politics, and Policies,
ed. Ronald Bayer and David L. Kirp (New Brunswick, NJ: Rutgers University Press, 1992),
49– 98. The journalist Ann Silversides’s biography of AIDS activist Michael Lynch remains
the best published overview of the early Canadian response, providing a remarkably de-
tailed description of the slow development of policy and of the rise of community- based
AIDS organizations and patient advocacy. Silversides’s work focuses on Toronto, at times
Introduction 21
care systems— predominantly privately funded in the United States ver-
sus a primarily publicly funded system in Canada from the late- 1960s
onward— a comparative approach reveals some striking similarities. In
both Canada and the United States, for example, federal offi cials were
slow to enact a public response. US President Ronald Reagan, whose
public silence over the disease lasted until 1987, was heavily criticized
for his lack of leadership on the issue. Although Canada’s minister of
health appointed an advisory board to offer guidance on the epidemic
in 1983, the country would not develop a federal policy until 1990. Ca-
nadian Prime Minister Brian Mulroney did not publicly discuss the dis-
ease until his opening speech at the 1989 World AIDS Conference in
Montreal, whereupon he was greeted by activists from ACT UP and the
Canadian group AIDS Action Now! shouting “Silence equals death!”62
Both countries experienced early cases in Haitian immigrants, before
the epidemic shifted to predominantly affect gay and bisexual men.63
Early community-
based organizations shared information about the
disease and response strategies between cities; later, the work of treat-
ment activists fl owed across the shared border. One of the contributions
of this study, therefore, is to more effectively blend disparate threads of
previously separated national histories, leading to not just a Canadian
at the expense of local developments elsewhere in Canada: Ann Silversides, AIDS Activ-
ist: Michael Lynch and the Politics of Community (Toronto: Between the Lines, 2003). In-
deed, much of the scholarship on AIDS in Canada has been shaped either by a regional or
city focus, or offered through the retrospective accounts of health- care professionals; look-
ing at Vancouver: Michael P. Brown, RePlacing Citizenship: AIDS Activism and Radical
Democracy (London: Guilford Press, 1997); focusing on Montreal: René Lavoie, “Deux
solitudes: les organismes sida et la communauté gaie,” in Sortir de l’ombre: histoires des communautés lesbienne et gaie de Montréal, ed. Irène Demczuk and Frank W. Remiggi
(Montreal: VLB Éditeur, 1998), 337– 62; for Quebec more generally: Carole Graveline,
Jean Robert, and Réjean Thomas, Les préjugés plus forts que la mort: le sida au Québec
(Montreal: VLB Éditeur, 1998). It would not be until the fi nal report of the Krever Com-
mission’s inquiry into the safety of the Canadian blood system was released in 1997 that a
national history of AIDS was published. Even then, the commission’s terms of reference
meant this history focused primarily on how HIV had entered and spread throughout the
country’s blood supply. As will be seen in chapter 5, this absence of a Canadian history of
the epidemic infl uenced a gay coalition’s decision to seek standing at the Krever inquiry.
62. Michelle Lalonde and Andre Picard, “AIDS Activists Disrupt Opening of Confer-
ence,” Globe and Mail [Toronto], June 5, 1989, A1, A5.
63. See, for example, Grégoire E. Noel, “Another Case of AIDS in the Pre- AIDS Era,”
Reviews of Infectious Diseases 10, no. 3 (1988): 668– 69.
22
chapter 0
or a US history of “Patient Zero” and the AIDS epidemic but a North
American one.
Regional Differences and Transnational Sex
With opening statements completed at the meeting, Curran quickly
got to the main topics of his presentation: surveillance and epidemio-
logical research. He summarized the CDC’s involvement with the epi-
demic, stemming from the recognition of an increase in 1980 of requests
for pentamidine— a drug stocked at the CDC to treat the rare PCP— and
provided a list of the life- threatening opportunistic infections the CDC’s
Task Force had since found in AIDS patients. Curran covered the un-
usually high frequency of AIDS cases in New York— “about 97 percent
of the cases reported in the entire world are in the United States and half
of them are in New York City”— and offered a summary of the CDC’s
case control study and its fi ndings. The study had found signifi cantly
higher sexual activity and amyl nitrite drug usage among the cases than
the controls. Curran noted that 75 percent of the reported cases were
in gay or bisexual men, and he suggested, in words that are important
to this book, that there was a variation in the responses to the disease
based on location. “In Toronto,” he noted dryly, “they think this is a syn-
drome that’s been made up by somebody else. In New York City they re-
ally really believe it.”64
* * *
In her book Sex and Germs (1985), the community activist and cul-
tural critic Cindy Patton outlined homophobic ideas about sexuality
that were present in the scientifi c treatment of AIDS and urged scien-
tists to “reorient their assumptions that gay men represent a homoge-
neous population.” She wrote that “each city where AIDS appears has
different gay community patterns and histories, sexual mores, and even
sexual practices, with differing levels of gay health care and possibly dif-
ferent opportunistic disease pools which affect the secondary disease
patterns in AIDS.”65 Patton argued that attention to the regional vari-
64. “NCAB Meeting,” 15– 34, quotation at 33– 34.
65. Patton, Sex and Germs, 26.
Introduction 23
ations in gay communities might reveal unexpected information about
the disease. One could extend her point about regional variation to the
manner in which different gay communities responded to the arrival of
AIDS. Curran’s seemingly glib remark, about the disbelief about AIDS
in Toronto’s gay community, is almost certainly a reference to an article
written by Toronto- based activist Michael Lynch and published a month
before the NCAB meeting in the November 1982 issue of the Body Poli-
tic, a gay Canadian left- wing monthly newspaper with a circulation span-
ning North America. The article urged gay men to be suspicious of any
attempts to link homosexuality to disease for fear that it would rep-
resent an undesirable return to an earlier era of medical control over
sexuality.66
During the 1970s and 1980s, struggles for gay and lesbian equality
gained a new visibility. As the authors of an amicus brief submitted for
the 2003 US Supreme Court decision in Lawrence v. Texas noted, sub-
stantial gains were made in terms of social acceptance of homosexuals
after the delisting of homosexuality as a mental disorder by the Amer-
ican Psychiatric Association (APA) in 1973, and particularly since th
e
1986 sodomy case of Bowers v. Hardwick. Religious attitudes changed
substantially, particularly within mainstream American Protestant de-
nominations. The federal government implemented changes to prevent
discrimination in the federal workforce on the basis of sexual orienta-
tion, and many companies and several states followed suit. A growing
mainstream interest in gay issues meant that the media gave increasing
coverage to these matters.67
These increasing levels of struggle and awareness did not, however,
result in immediate and lasting change; indeed, they produced resis-
tance in many quarters. Widespread discrimination and antipathy to-
ward lesbian, gay, bisexual, and transgender/transsexual (LGBT) in-
dividuals was common and continued across much of Canada and the
United States, sustained by medical and scientifi c discourse and an ex-
pansive web of antihomosexual laws. Activists’ gains were accompanied
by setbacks. Although homosexuality was eliminated—
after a
bitter
66. Michael Lynch, “Living with Kaposi’s,” Body Politic 88 (November 1982): 31– 37.
For Lynch’s preparation of this article, see Silversides, AIDS Activist, 21– 23.
67. George Chauncey, “‘What Gay Studies Taught the Court’: The Historians’ Amicus
Brief in Lawrence v. Texas, ” GLQ: A Journal of Lesbian and Gay Studies 10, no. 3 (2004): 509– 38.
24
chapter 0
dispute—
from the American Psychiatric Association’s offi cial list of
mental disorders in 1973, the condition of gender identity disorder was
added in 1980.68 During the 1970s, a number of American states intro-
duced specifi cally antihomosexual sodomy laws, a move that can be
viewed not only as a response to gay liberation efforts but also as evi-
dence of a wide level of social support for this discrimination.69 Between
1973 and 1994, two- thirds to three- quarters of American respondents
agreed with the statement that sexual relations between two adults of
the same sex were always wrong. These results peaked at 78 percent in
agreement in 1991, before they began a gradual but lasting downward
trend. Evidently, during the period under study, homophobic ideas and
attitudes were widespread.70
In view of the confl icts over sexuality that had emerged in the 1970s—