Oak Ridge Thermal Ellipsoid Plot
PCC
Portland Community College
PCP
Pneumocystis carinii pneumonia
PLWH
person living with HIV/AIDS
PHS
[United States] Public Health Service
PWA
person with AIDS or the group People with AIDS
SARS
severe acute respiratory syndrome
SES socioeconomic
status
SFAF
San Francisco AIDS Foundation
SFPL
San Francisco Public Library
SIV simian
immunodefi ciency virus
STDs
sexually transmitted diseases
STIs
sexually transmitted infections
TB tuberculosis
UCSF
University of California– San Francisco
UN United
Nations
VD venereal
disease
VDCD
Venereal Disease Control Division
Chapter Zero
Introduction
“He Is Still Out There”
He is a living man with Kaposi’s sarcoma. He is still out there. — James Curran, chief, AIDS Task Force, Centers for Disease Control (CDC), 1982
On a rainy day in December 1982, some of the most distinguished
cancer researchers and health advocates in the United States gath-
ered in a darkened National Institutes of Health conference room in
Bethesda, Maryland, to listen to an update on the acquired immune de-
fi ciency syndrome (AIDS) epidemic. Projected slides of graphs and fi g-
ures broke through the somberness to support the speakers’ points as
fi rst Dr. Bruce Chabner, acting director of the National Cancer Institute
(NCI), and then Dr. James Curran, head of the CDC’s AIDS Task Force,
addressed the National Cancer Advisory Board during the board’s fi -
nal meeting of the year.1 The transcript of an audio recording captured
that day offers an entry point into the contemporary state of scientifi c
knowledge regarding the then newly recognized and recently named
AIDS epidemic, following eighteen months of concerted investigation.
This record also documents an early instance of the type of attention at-
tracted by the man who would later become known as “Patient Zero.”
1. The transcript is available online through the National Institute of Health’s website
devoted to AIDS history. See “Presentations at the NCAB Meeting, December 1, 1982,”
meeting transcript, December 1, 1982, http://
history
.nih
.gov/
NIHInOwnWords/
assets/
media/ pdf/ unpublished/ unpublished _38 .pdf.
2
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The meeting’s transcript serves as a useful “spine” for this introductory
chapter, as it presents in microcosmic form many of the questions and
concerns that would be expressed over the following decade and a half
and which will be explored in this book.
As host of the meeting, Chabner spoke fi rst, detailing developments
in AIDS research that had occurred since the syndrome had fi rst come
to the attention of the NCI and presented both “the possibility of an un-
usual new form of cancer and also an opportunity to study a disease
from the prodromal symptoms.”2 He explained how a decrease in the
number of “helper T- cell[s]”— crucial actors in the immune system’s ef-
forts to control infection— had resulted in clinical displays of immune
defi ciency for a number of patients. This defi ciency was characterized by
Kaposi’s sarcoma (KS), a skin cancer, and a series of opportunistic infec-
tions, most notably Pneumocystis carinii pneumonia (PCP).3 The con-
dition, Chabner went on, had fi rst been noticed in the homosexual male
population of New York, as early as 1978, though there were now cases
in most major US cities, with the highest numbers in New York, Los An-
geles, and San Francisco, and in several other countries.4
In addition to this stricken “sub- population” of the gay community,
which he observed was characterized by “a very high level of sexual ac-
tivity,” Chabner proceeded to list the other “affected groups” under in-
vestigation. He mentioned intravenous drug users, most of whom were
young African American or Hispanic heterosexuals living in New York
City or the adjacent New Jersey area.5 The scientist made a special note
of the third group, Haitian immigrants, who were of interest because
they had both KS and the “overwhelming infections” of PCP and irregu-
2. Ibid., 1.
3. Ibid., 1, 3 (page 2 missing).
4. Ibid.
5. Ibid., 4. “Affected groups” would soon be replaced, controversially, by “high risk
group” in early 1983; see CDC, “Prevention of Acquired Immune Defi ciency Syndrome
(AIDS): Report of Inter- Agency Recommendations,” Morbidity and Mortality Weekly Re-
port 32, no. 8 (1983): 101– 3 (hereafter MMWR). For a critique of how “risk groups” served a social function of marking out certain individuals as beyond the moral concern of the
“general population,” see Jan Zita Grover, “AIDS: Keywords,” in AIDS: Cultural Analy-
sis, Cultural Activism, ed. Douglas Crimp (Cambridge, MA: MIT Press, 1988), 27– 28. For
more on the problematic categorization of “4- H risk groups” (homosexuals, “heroin ad-
dicts,” hemophiliacs, and Haitians), see Paula Treichler, “AIDS, Gender, and Biomedical
Discourse: Current Contests for Meaning,” in AIDS: The Burdens of History, ed. Eliza-
beth Fee and Daniel M. Fox (London: University of California Press, 1988), 194, 198.
Introduction
3
lar tuberculosis, and yet in general they admitted no history of homosex-
uality or drug use.6 Rounding out this list of affected groups was a small
number of hemophiliac patients. Chabner spent the rest of his presenta-
tion discussing the clinical manifestations of the syndrome, advancing
the likelihood of a “virally caused agent” similar to hepatitis B, and out-
lining the funds and efforts that the NCI had devoted to AIDS research.7
* * *
This book examines the origins, emergence, dissemination, and conse-
quences of one “fact” that took shape during the early years of the North
American AIDS epidemic, drew discussion at the 1982 NCAB meet-
ing, and proliferated in words and images in the years that followed: that
of “Patient Zero.” For years, several successive editions of a top- selling
medical dictionary— a type of publication frequently considered to bear
the ultimate imprimatur of authority— contained an entry for Patient
Zero which read: “an individual identifi ed by the Centers for Disease
Control and Prevention (CDC) as the person who introduced the human
immunodefi ciency virus in the United States. According to CDC rec-
ords, Patient Zero, an airline steward, infected nearly 50 other persons
before he died of acquired immunodefi ciency syndrome in 1984.”8
While this defi nition is inaccurate on several counts, for reasons that
will become evident in the following chapters, it serves as an adequate
summary of the resilient popular understa
nding of the “Patient Zero”
story. This book seeks to answer four questions. What were the origins
of this idea, including its precipitating causes and historical anteced-
ents? How did it achieve its rapid diffusion into North American social
consciousness and beyond in the course of the early years of the AIDS
epidemic and with what consequences? What factors can explain the
idea’s continued resilience and widespread cultural signifi cance across
6. “NCAB Meeting,” 5.
7. Ibid., 9. The CDC advanced a single- agent theory in earnest in the summer of 1982,
though added support would come in December of that year, shortly after the NCAB
meeting, with reports of transmission through a blood transfusion case in San Francisco;
see Arthur J. Ammann et al ., “Acquired Immunodefi ciency in an Infant: Possible Trans-
mission by Means of Blood Products,” Lancet 321, no. 8331 (1983): 956– 58.
8. “Patient Zero,” in Mosby’s Medical Dictionary, 9th ed., ed. Marie T. O’Toole
(St. Louis: Mosby Elsevier, 2013), 1346. The entry appeared for the fi rst time in the dic-
tionary’s fi fth edition (1998) and remained unchanged until the tenth edition (2017).
4
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disciplinary and national boundaries? And fi nally, what can we learn
about the lived experience of Gaétan Dugas, the fl ight attendant who was
labeled as “Patient Zero,” who was publicly vilifi ed several years after
his death, and whose own perspective has effectively been silenced? Un-
derstanding the construction and widespread appeal of “ Patient Zero”
offers insight into the complicated ways in which socie ties respond to the
threat of deadly epidemics and, more generally, how they make sense
of complex events. This book traces the development of this idea from
“Patient O” to “Patient 0” and fi nally to “Patient Zero,” through several
communities of practice in public health and the media, illuminating the
fl ows of power and struggle at play in the process. It will also challenge
some of the damaging meanings the term took on, particularly in the
wake of the publication of And the Band Played On (1987), the infl uen-
tial history of the American epidemic written by the journalist Randy
Shilts that brought the story to a wide audience.9 In following this path,
this book embarks on a social, cultural, and medical history of the early
AIDS epidemic in Canada and the United States.
In addition to the efforts of physicians, scientists, and epidemiolo-
gists— who dominated the NCAB meeting in 1982 as well as the initial
investigations into the syndrome— how AIDS has been understood and
experienced has been shaped by academics, writers, artists, and activ-
ists, who drew upon diverse backgrounds including cultural and art the-
ory, political science, sociology, legal studies, and history.10 Since it was
9. Randy Shilts, And the Band Played On: Politics, People, and the American AIDS
Epidemic (New York: St. Martin’s Press, 1987). Shilts also offers an account of the NCAB
meeting in Band, 201, though drawing as he did on the reminiscences of Curran and
Dr. Robert Gallo, he was not aware of any mention at that meeting of the man he would
call “Patient Zero.”
10. A few key works from each discipline help sketch the contours of this enormous cov-
erage: in epidemiology, see James W. Curran et al., “Epidemiology of HIV Infection and
AIDS in the United States,” Science 239, no. 4840 (1988): 610– 16; in cultural criticism and
art theory, see Cindy Patton, Sex and Germs: The Politics of AIDS (Boston: South End
Press, 1985); Simon Watney, Policing Desire: Pornography, AIDS and the Media (Minne-
apolis: University of Minnesota Press, 1987); Cindy Patton, Inventing AIDS (New York:
Routledge, 1990); Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (New
York: Picador USA, 1990); Paula Treichler, How to Have Theory in an Epidemic: Cultural
Chronicles of AIDS (London: Duke University Press, 1999); Cindy Patton, Globalizing
AIDS (Minneapolis: University of Minnesota Press, 2002); Douglas Crimp, Melancholia
and Moralism: Essays on AIDS and Queer Politics (London: MIT Press, 2002); Priscilla
Wald, Contagious: Cultures, Carriers, and the Outbreak Narrative (London: Duke Univer-
Introduction
5
fi rst recognized as a newly emerging and deadly epidemic more than
thirty years ago, AIDS has generated a truly vast literature across the
medical sciences, social sciences, humanities, and law. The AIDS ep-
idemic, as the cultural scholar Paula Treichler has perceptively noted,
was at the same time both an epidemic of transmissible disease and “an
epidemic of signifi cation”— where meanings reproduced rapidly, with vi-
tal consequences for the way in which the condition was understood, ex-
perienced, and addressed.11
This epidemic of transmissible disease was fi rst recognized during a
period in the late twentieth century when knowledge claims by practi-
tioners of science and medicine had come under increasing attack from
humanistic circles in many parts of the world. This trend formed part
of a broader questioning of authority, objectivity, and the use of grand
narratives— such as a confi dent belief in historical progress— and en-
couraged some observers to consider how humans, as social actors, went
about creating scientifi c knowledge.12 Critics argued that scientifi c and
medical knowledge claims, rather than representing a transparent depic-
tion of the natural world, were instead the product of meaning- making
practices. Thus, they reasoned, these claims, and the work underpinning
them, ought to be submitted to investigation and analysis much as any
other cultural activity would be.13
sity Press, 2008); in political science, see Dennis Altman, AIDS in the Mind of America:
The Social, Political, and Psychological Impact of a New Epidemic (Garden City, NY: An-
chor Press, 1986); Ronald Bayer, Private Acts, Social Consequences: AIDS and the Politics
of Public Health (New Brunswick, NJ: Rutgers University Press, 1991); in sociology, see Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1996); in legal studies, see Matthew Weait, “Taking the
Blame: Criminal Law, Social Responsibility and the Sexual Transmission of HIV,” Journal
of Social and Family Law 23, no. 4 (2001): 441– 57; Lawrence O. Gostin, The AIDS Pan-
demic: Complacency, Injustice, and Unfi lled Expectations (London: University of North
Carolina Press, 2004). A separate listing of historical studies follows.
11. Triechler’s famous quote comes from a paper fi rst published in 1988; see Triechler,
Theory in an Epidemic, 11. Her work has had a signifi cant infl uence on this book’s
approach.
12. Jan Golinski, Making Natural Knowledge: Constructivism and the History of Sci-
ence (London: University of Chicago Press, 2005), 6; M. R. Bury, “Social Constructionism and the Development of Medical Sociology,” Sociology of Health and Illness 8, no. 2
(1986): 137– 69; Ludmilla Jordanova, “The Social Construction of Medical Knowledge,”
Social History of Medicine 8, no. 3 (1995): 363.
13. Golinski, Makin
g Natural Knowledge, 5, 16. Critics have alleged that some practi-
tioners of social construction went too far in their attempts to unsettle the status quo. The
6
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Not only did this intellectual tradition infl uence activist responses to
AIDS in the 1980s and 1990s, but it also raises important questions for
this book. In our daily lives we most frequently use words, stories, and
images to interpret external phenomena and express our understanding
of the world, and so it is vital to see these elements as an essential, con-
stitutive part of our reality and not simply a neutral, natural label or a
depiction of how things “actually” are in the world. Who gets to name?
How do they see the world? What type of word or image do these speak-
ers choose to represent the phenomena they observe? What preexisting
frameworks, narratives, and experience do they draw on? How do they
tell their stories? To whom? These are questions that illuminate fl ows of
power in society, so it is vital that we do not take names, images, and sto-
ries to be self- evident. In moral terms, such representations shape in pro-
found ways our notions of right and wrong, safety and risk, cause and
effect, as well as responsibility, blame, and culpability. Rather than view-
ing “knowledge” as a sum of facts identifi ed by experts, or an accumu-
lation of common sense, it is important to think of it as an uneasy, un-
stable, and time- bound truce in an ongoing and unending struggle for
understanding. At stake are questions of authority, expertise, and rep-
resentation, not to mention the agency and treatment of those who lack
the power, ability, or interest to adequately represent themselves. These
are evidently historical questions as well, as meanings change, intermix,
and are recycled over time, while ebbs and fl ows of power affect who
medical historian Charles Rosenberg, for example, criticized the work of one scholar for
asserting that all that mattered in the case of a cholera epidemic were cultural practices
and denying the existence of “disease” itself; see Charles E. Rosenberg, “Disease and So-
cial Order in America: Perceptions and Expectations,” in Fee and Fox, AIDS: The Bur-
dens of History, 13. Rosenberg was critiquing François Delaporte’s Disease and Civiliza-
tion: The Cholera in Paris, 1832, trans. Arthur Goldhammer (London: MIT Press, 1986).
Patient Zero and the Making of the AIDS Epidemic Page 2