Patient Zero and the Making of the AIDS Epidemic
Page 6
both socially with Anita Bryant, the conservative American social re-
former, and medically with the delisting of homosexuality— there was a
particular suspicion held by many LGBT people about the intrusion of
the state into matters of sexuality. In 1981, gay Torontonians rioted in
furious response to a police invasion of the city’s four main bathhouses.
Nearly three hundred men frequenting the premises were arrested, and
some of these individuals forced to undergo testing for sexually transmit-
ted infections. Medical experts had for decades pathologized gays and
lesbians; within this context, knowledge claims about a disease seem-
ingly related to sexuality were seen as extremely problematic.71 Since the
68. Joanne Meyerowitz, How Sex Changed: A History of Transsexuality in the United
States (London: Harvard University Press, 2002), 255.
69. Chauncey, “Gay Studies,” 518.
70. Karlyn Bowman, Andrew Rugg, and Jennifer Marsico, Polls on Attitudes on Ho-
mosexuality & Gay Marriage (Washington, DC: American Enterprise Institute for Pub-
lic Policy Research, 2013), 4, http://
www
.aei
.org/
fi les/ 2013/ 03/ 21/ - polls - on - attitudes - on
- homosexuality - gay - marriage _151640318614 .pdf. See also Lisa Duggan and Nan D. Hun-
ter, Sex Wars: Sexual Dissent and Political Culture (London: Routledge, 1995).
71. “Medical Caution and Political Judgment,” Body Politic [Toronto], May 1983, 8.
Suspicion of medical truth claims was certainly not limited to North American gay men at
this time. By the mid- 1970s, a number of infl uential authors, including Thomas Szasz, Er-
ving Goffman, Michel Foucault, and Ivan Illich, had mounted a sustained critique on the
authority of medical knowledge and its extensive reach. See, for example, Thomas Szasz,
The Myth of Mental Illness: Foundations of a Theory of Personal Conduct (New York:
Dell, 1961); Erving Goffman, Asylums: Essays on the Social Situation of Mental Patients
and Other Inmates (Garden City, NY: Anchor Books, 1961); Michel Foucault, Madness
and Civilization, trans. Richard Howard (New York: Pantheon Books, 1965); Michel Fou-
Introduction 25
goal of free sexual expression— unencumbered by intrusions of the state,
the church, and medicine— had been a key driver of lesbian and gay lib-
eration in the 1970s, it often took personal experience of the devastation
caused by AIDS for many LGBT individuals to even begin thinking of
compromising any aspect of their hard- won sexual rights.72
Between 1981 and 1984, the terrain of accepted knowledge was very
uneven and fi ercely contested, not simply between scientists and activ-
ists but also among activists in lesbian and gay communities themselves.
Many of the changes suggested out of concern for safety were radical
in the context of a sexual revolution that had been strongly under way
since the early 1970s. Toronto, to return to Curran’s remark that singled
out that city, was not hard- hit by AIDS until early 1983, and it would
take several months for its gay community to develop an organized re-
sponse, in the absence of action by public health authorities.73 The de-
layed visibility of the syndrome in Toronto combined with the recently
reinvigorated activism against sexual regulation to produce discussions
that differed substantially from those in New York or San Francisco, cit-
ies with different gay community formulations, different histories, and
earlier dates of epidemic emergence. Individuals who traveled between
these cities would encounter strikingly different local responses and atti-
tudes. Bearing this uneven terrain in mind, this book draws attention to
the problem of knowledge dissemination, contestation, and uptake in a
time of change, as well as the problem of assuming a homogeneous cul-
ture of reception.
The emergence of AIDS occurred in parallel with an increase in
scholarship investigating the history of sexuality. Following Michel Fou-
cault’s fi eld- shaping work in the late 1970s, historians, sociologists, and
journalists have undertaken a large number of projects in this area, with
a particular focus on the United States, examining the rise of modern
gay and lesbian communities and questioning a simple trajectory from
repression to sexual liberation.74 Much of this work has focused on
cault, The Birth of the Clinic: An Archaeology of Medical Perception, trans. A. M. Sheri-
dan Smith (New York: Pantheon Books, 1973); Ivan Illich, Medical Nemesis: The Expro-
priation of Health (London: Calder and Boyars, 1975).
72. Gary Kinsman, The Regulation of Desire: Homo and Hetero Sexualities, 2nd ed.
(Montreal: Black Rose Books, 1996), 288– 329; Tom Warner, Never Going Back: A History
of Queer Activism in Canada (Toronto: University of Toronto Press, 2002), 61– 164.
73. Silversides, AIDS Activist, 37– 61.
74. Michel Foucault, The Will to Knowledge, vol. 1 of The History of Sexuality, trans.
26
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metropolitan areas, both by tracing the development of lesbian and gay
communities within individual cities and by examining the assumption
that networks of same- sex attraction depended on urban concentrations
of like- minded individuals.75 Historians have explored attempts to med-
icalize and pathologize homosexuality, as well as efforts to challenge
this process.76 Increased attention to sexuality led to histories of sexu-
ally transmitted diseases (STDs), in both Canada and the United States,
which offered overviews of social and medical responses to the problem
from the nineteenth century onward, though these accounts have often
paid little notice to the particular linkages of same- sex contacts with ve-
nereal disease (VD).77
Historians have increasingly begun to consider matters of sexuality
Robert Hurley (1978; repr., London: Penguin, 1998); John D’Emilio, Sexual Politics, Sex-
ual Communities: The Making of a Homosexual Minority in the United States, 1940 – 1970
(Chicago: University of Chicago Press, 1983); John D’Emilio and Estelle B. Freedman, In-
timate Matters: A History of Sexuality in America, 2nd ed. (New York: Harper & Row,
1997).
75. For example, Elizabeth Lapovsky Kennedy and Madeline D. Davis, Boots of
Leather, Slippers of Gold: The History of a Lesbian Community (New York: Routledge,
1993); Esther Newton, Cherry Grove, Fire Island: Sixty Years in America’s First Gay and
Lesbian Town (Boston: Beacon, 1993); George Chauncey, Gay New York: Gender, Ur-
ban Culture, and the Making of the Gay Male World, 1890 – 1940 (New York: Basic Books,
1994); Nan Alamilla Boyd, Wide- Open Town: A History of Queer San Francisco to 1965
(Berkeley: University of California Press, 2003); Marc Stein, City of Sisterly and Brotherly
Loves: Lesbian and Gay Philadelphia, 1945– 72 (Philadelphia: Temple University Press,
2004); Lilian Faderman and Stuart Timmons, Gay L.A.: A History of Sexual Outlaws,
Power Politics, and Lipstick Lesbians (New York: Basic Books, 2006). For a review of this
literature, which sees much of it as examples of local studies responding to the national
focus of John D’Emilio, se
e Marc Stein, “Theoretical Politics, Local Communities: The
Making of U.S. LGBT Historiography,” GLQ: A Journal of Lesbian and Gay Studies 11,
no. 4 (2005): 605– 25.
76. Jennifer Terry, An American Obsession: Science, Medicine and Homosexuality in
Modern Society (London: University of Chicago Press, 1999); Henry L. Minton, Departing
from Deviance: A History of Homosexual Rights and Emancipatory Science in America
(London: University of Chicago Press, 2002).
77. Allan M. Brandt, No Magic Bullet: A Social History of Venereal Disease in the
United States since 1880, expanded ed. (Oxford: Oxford University Press, 1987); Jay Cas-
sel, The Secret Plague: Venereal Disease in Canada, 1838– 1939 (London: University of To-
ronto Press, 1987); Jay Cassel, “Private Acts and Public Actions: The Canadian Response
to the Problem of Sexually Transmitted Disease in the Twentieth Century,” Transactions
of the Royal Society of Canada 4 (1989): 305– 28. While the term sexually transmitted in-
fections (STIs) now appears to be preferred, this book will make use of the historically ap-
Introduction 27
from a transnational perspective. “Sexual behavior,” wrote one historian
in 2009, “is fundamentally about interconnection, and it is not unusual
for sexual actors to transgress the boundaries constructed to constrain
them.”78 A decade earlier, two fellow historians argued that “it is im-
possible to understand the sexual history of New York, Rio de Janeiro,
San Juan, and other cities in the Americas without coming to terms with
the implications of such transnational movements and the tremendous
translocal mobility of every city’s residents.”79 National boundaries did
not constrain the AIDS epidemic. They did not halt the silent spread of
HIV through migration movements or the fl ow of blood products. Nor
did they limit Gaétan Dugas and other unnamed young gay men before
and after him as international residents and lovers, unaware of a viral
passenger they brought with them on their sexual travels. For these rea-
sons, the importance of adopting a transnational approach is clear. A
historical investigation of the “Patient Zero” story focusing solely on
one country would inevitably yield an incomplete and unsatisfactory
analysis.
The Limits of Public Health
Near the end of his presentation, Curran summarized a study under-
taken earlier that year in Los Angeles that supported “the postulate that
this might be a sexually transmitted etiology among homosexual men.”80
He highlighted “one case outside of California who had had direct sexual
contact with four cases in Los Angeles, none of whom knew each other
and were separated by some 75 miles in terms of their living residence.”
He went on to reinforce his point: “Further interview of this out of Cali-
fornia case, who has lived now in two countries and four different states,
we found that we were able to get a list of some 72 sexual partners whose
names he had, out of a number of 750 that he claimed to have had during
propriate terms: venereal disease (VD) until the 1970s and sexually transmitted diseases
(STDs) in the 1980s and 1990s.
78. Joanne Meyerowitz, “AHR Forum: Transnational Sex and U.S. History,” American
Historical Review 114, no. 5 (2009): 1274; see also Margot Canaday’s introduction to this
forum, pp. 1250– 57.
79. Elizabeth A. Povinelli and George Chauncey, “Thinking Sexuality Transnation-
ally,” GLQ: A Journal of Lesbian and Gay Studies 5, no. 4 (1999): 440.
80. “NCAB Meeting,” 28.
28
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the past three years. He is a living man with Kaposi’s sarcoma. He is still
out there.”81 Curran pointed out that “fi ve of the patients that he had sex-
ual contact with that developed illness were during 1980,” between nine
and twenty- two months before they developed symptoms. Although he
suggested that it was a “very loose fi gure,” he concluded that the average
time period “between contact and onset of illness is about 14 months.”82
Curran’s mention of the cluster study and the “out of California case,”
the individual whom his colleagues at the CDC had already begun call-
ing “Patient O,” obviously made a signifi cant impact on the gathering.
Several minutes later, after Curran had moved on from the Los Angeles
cluster study and was considering the transmission patterns in IV drug
users and hemophiliacs, there was an interruption from the board panel,
which bears reprinting here at length:
Ms. Kushner: May I ask if the gentleman with several hundred fi fty partners
is still out there loose or has he been put away? I mean really, is there no
recourse?
Dr. Cur r an: We’re dealing with a hypothesis that this is a transmissible
agent. It’s been recommended to him that he (laughter) that he (laugh-
ter) [ sic] not have any sexual partners. It was recommended that he go into
seclusion.
Ms. Kushner: But, there’s no legal, nothing that CDC can do in a case like
this?
Dr. Cur r an: Well, the country’s been fairly, this is a philosophical remark,
but I think the country’s been fairly conservative about making recom-
mendations towards people’s personal lives. What do we tell surgeons who
are hepatitis B surface antigen and E antigen positive, or dentists who are
hepatitis B surface antigen E antigen positive? And I’ve got to clean my
teeth, I’ll tell you.
Ms. Kushner: People with TB have to go to homes in the state of Maryland.
Dr. Cur r an: Well, there’s no defi nite test for this disease and there probably
are many people who may be carriers of it and it’s very diffi cult to— We’ll
be talking about prevention recommendations later.83
81. Ibid., 29. Curran’s comments suggest that he was aware that Dugas had lived in
Quebec, Ontario, New York, and California.
82. Ibid.
83. “NCAB Meeting,” 31– 33. The typist’s interjections are in rounded parentheses;
mine are in square brackets. For more on homophobia at the NIH, see Altman, AIDS in
Introduction 29
Curran had captured the attention of Rose Kushner, one of the advi-
sory board’s public representatives. On the basis of her advocacy work
for women with breast cancer, she had been nominated to the board by
President Jimmy Carter in 1980 for a six- year term.84 It is quite likely that
Kushner would have presented herself, in a high- level scientifi c environ-
ment such as the NCI, as a vox populi; as a result, her comments with re-
gard to isolation offer an early indication of what one aspect of the wider
public reception of the “Patient Zero” story would later be.85 Kushner’s
own position on the committee, a result of late twentieth- century devel-
opments in health activism by patients, did not appear to instill her with
any particular sympathy for the patient under discussion. However, the
social developments that brought advocates like her— though often not
gay men— to the table will be an important theme running through this
book, as the patient- rights movement would unsettle long- standin
g pa-
triarchal assumptions on the part of physicians.
The laughter at the NCAB meeting, elicited by the number of sex-
ual partners reported by the “Out of California” case, suggests the po-
sitions of disdain, distance, and disbelief from which many members of
the scientifi c community and the wider public viewed the behavior and
practices of the homosexual men under study during this period.86 It tes-
the Mind of America, 49. Curran’s remark about dentists was prescient, given the intense
debates surrounding this profession and the risk of transmitting HIV in the late 1980s.
See, for example, Wald, Contagious, 251– 54.
84. Barron H. Lerner, “Ill Patient, Public Activist: Rose Kushner’s Attack on Breast
Cancer Chemotherapy,” Bulletin of the History of Medicine 81, no. 1 (2007): 227. A vocal
critic of the medical establishment, and well- known for her efforts to empower women in
the decision- making process for their treatments, Kushner had a reputation for being abra-
sive, acknowledging in an interview earlier that year that some people in the government’s
cancer research community considered her “an angry, hateful witch”; see Sandy Rovner,
“Healthtalk: For Everywoman,” Washington Post, September 12, 1980, F5.
85. Kushner appears to have been mistaken with regard to the institutional isolation
of contemporary tuberculosis (TB) patients. Although convalescence in sanatoriums was
certainly part of the treatment for tuberculosis during Kushner’s lifetime, the rise of suc-
cessful drug treatments meant that such isolation was— temporarily, before the rise in
HIV- related drug- resistant TB— largely a thing of the past in Maryland and across the na-
tion, as a series of Washington Post articles had recently highlighted. See Sandra R. Gregg,
“City’s TB Clinic Survives by Borrowing Everything,” Washington Post, May 25, 1981, B1;
Leslie Berger, “Nurse Battles City’s TB Cases with Cunning Detective Work,” Washing-
ton Post, August 11, 1982, sec. District Weekly, DC1.
86. See also Jon Cohen, Shots in the Dark: The Wayward Search for an AIDS Vaccine
(New York: W. W. Norton, 2001), 3– 15.
30
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tifi es to the differences in sexual norms between the scientifi c and medi-
cal communities and the “sub- population” of the gay community under