Patient Zero and the Making of the AIDS Epidemic
Page 14
Dr. W. H. Hamer voiced a strong opposition to the importance of the
carrier and criticized Soper’s investigation of the New York case for not
paying suffi cient attention to other likely causes, such as infected sea-
food.114 He also challenged the authority of the laboratory, noting that
“the conditions of scientifi c experiment were not rigorously fulfi lled in
these laboratory experiments.”115 Moreover, in an argument which strik-
ingly anticipated one put forward more than eighty years later regarding
HIV/AIDS, Hamer contended that the typhoid bacillus was not neces-
sarily the cause of typhoid and that it might be one of “a number of or-
ganisms, believed at one time to be ‘causal,’ [which] are now classed as
‘secondary invaders.’”116
While Hamer’s objections can be taken to represent the resistance
from some members of the scientifi c community to the concept of the
healthy carrier, a balanced history must also consider those raised by
members of the lay public, and particularly by affected carriers.117 Despite
a varied reception to ideas of contagion in educated circles during the
mid- nineteenth century, many historians have noted how regular citizens
adhered to the ancient and strongly held belief that many diseases were
spread from person to person, from the sick to the healthy.118 With chol-
era, the conviction that the disease was noncontagious was limited to the
no. 2 (2005). This quote is drawn from Heather Worth, Cindy Patton, and Diane Gold-
stein, “Introduction to Special Issue: Reckless Vectors: The Infecting ‘Other’ In HIV/
AIDS Law,” 4.
114. W. H. Hamer, “A Discussion on the Etiology and Epidemiology of Typhoid (En-
teric) Fever: The Relation of the Bacillus typhosus to Typhoid Fever,” Proceedings of the
Royal Society of Medicine 1 (1907– 8): 205.
115. “A Discussion on the Etiology and Epidemiology of Typhoid (Enteric) Fever: Dis-
cussion,” Proceedings of the Royal Society of Medicine 1 (1907– 08): 227– 28.
116. Hamer, “Bacillus typhosis,” 217. Hamer’s argument would be echoed many years
later by Peter Duesberg, as noted in the introduction to this book.
117. In “Methods of Outbreak Investigation in the ‘Era of Bacteriology’ 1880– 1920,”
Sozial- und Präventivmedizin/Social and Preventive Medicine 46, no. 6 (2001): 355– 60,
Anne Hardy argues that, although perhaps extreme, Hamer’s critical approach to the idea
of the carrier was representative of a widely held English reluctance to adopt an overly au-
thoritative public health approach.
118. Indeed, such popular belief was often associated with “primitive” societies and
no doubt a contributing reason for many elite members to distance themselves from such
views. See Pelling, “Meaning of Contagion,” 17.
What Came Before Zero? 75
medical profession and educated members of the public during the nine-
teenth century; most laypeople believed in some sort of contagion, mak-
ing it diffi cult for authorities to set up hospitals to treat patients or to staff
these buildings with nurses.119 Yellow fever, another epidemic disease
whose manner of spread was contested by medical experts, was thought
by most of the population to be communicable.120 Typhoid was held to
be similarly transmitted, either through exposure to sick individuals or
to contaminated water and milk products. Within this understanding of
transmission, it would have seemed particularly nonsensical to suggest
that healthy people could harbor disease- causing agents for a sickness
they had experienced long ago or with which they had never thought
themselves to have been affl icted.121 Thus, just as Mary Mallon found it
incomprehensible that she might bear responsibility for infecting others
with typhoid when she did not feel sick, one can understand how, years
later, Gaétan Dugas rejected as unlikely the idea that his “cancer”— or
the hypothesized infection underlying it— could be transmissible.
* * *
As we have seen, the popular impulse to allocate blame for disease has
often gravitated toward nominating cultural outsiders for the role of dis-
ease “carriers.” This distancing process has resulted in a history of ac-
cused disease carriers sharing the discriminated role and fi nding them-
selves in that position in part due to their different sex, sexuality, gender,
race, ethnicity, or religion. Also, as the germ theory of disease gained ac-
ceptance, an increased emphasis on cleanliness and individual respon-
sibility reinforced earlier notions of moral failure and contamination
which epidemics brought to light.
These historical themes lay the groundwork for understanding why
Randy Shilts recognized that the investigations of a sexual network link-
ing early AIDS cases would serve as a compelling thread for his book
and, in particular, why his characterization of Dugas as “Patient Zero”
would capture the public imagination. By emphasizing the fl ight atten-
119. Rosenberg, Cholera Years, 81.
120. See Margaret Humphreys, “No Safe Place: Disease and Panic in American History,”
American Literary History 14, no. 4 (2002): 851; as well as her monograph Yellow Fever
and the South (New Brunswick, NJ: Rutgers University Press, 1992), 18.
121. Leavitt, Typhoid Mary, 170.
76
chapter 1
dant’s sexuality, his early diagnosis with an AIDS- related illness and
sexual liaisons with other cases, his alleged bathhouse encounters facili-
tated through an unnatural beauty, and his initial subclinical and mostly
hidden infection, Shilts’s portrayal resonated with and reproduced
sometimes centuries- old ideas of irresponsible behavior associated with
epidemic disease. Similarly, accusations of deliberate disease spreading
have long played a role in times of epidemic, often representing a sense
of social helplessness and paranoia at what other members of society
might do rather than, necessarily, a sense of what they actually do. Given
this history, it is utterly unsurprising that accusations of disease spread-
ing should have occurred during the AIDS epidemic, with ill intentions
ascribed to the socially vulnerable and marginalized “deviant,” without
a rigid adherence to evidence. It also helps to understand the interpre-
tive frames many people used to make sense of the CDC’s early AIDS
investigations, a subject to which this book now turns.
Chapter Two
The Cluster Study
The CDC cluster study . . . is pivotal to the research that will be done in the next 2– 5
years, for it strongly suggests that the recent outbreak of Kaposi’s sarcoma and pneumo-
cystis pneumonia is caused by an infectious agent which is being sexually transmitted.
— Marcus A. Conant, dermatologist, San Francisco, 19821
The cluster is in fact a textbook example of constructing your empirical evidence to fi t your
theory. — Andrew R. Moss, epidemiologist, San Francisco, 19882
In the autumn of 1988, a San Francisco– based epidemiologist wrote
to a New York literary journal to critique an AIDS study conducted
by one of his professi
onal colleagues several years earlier. In many ways,
the New York Review of Books was an unusual forum for a disagree-
ment about epidemiology. One might normally expect a challenge of this
sort to take place within the discussion pages of an academic publication
or at a conference session. This, however, was not a typical case.
In his letter, published in early December, Andrew Moss addressed a
review that had appeared in a previous issue of the periodical. This ar-
ticle had contrasted two accounts of the impact of AIDS in the United
States: one a report from a presidential commission on the HIV epi demic
1. Marcus Conant, letter to Sheldon Andelson (a Los Angeles– based gay political
fund- raiser who had expressed concerns about the study’s accuracy), 17 September 1982,
folder 16, box 1, Marcus A. Conant Papers, Archives and Special Collections, Library and
Center for Knowledge Management, University of California– San Francisco (hereafter
cited as Conant Papers).
2. Andrew R. Moss, “AIDS without End,” letter to the editor, New York Review of
Books 35, no. 19 (1988): 60.
78
chapter 2
and the other Randy Shilts’s popular history, And the Band Played On.3
Moss took issue with one section of the review in which the authors dis-
cussed a theory that suggested the North American epidemic could be
traced to one individual. The epidemiologist complained that the au-
thors had misattributed the “‘patient zero’ story” to him and had also
indicated that most scientists, particularly his colleague William Dar-
row, were of the opinion that the story was no longer true. “This is not
correct,” Moss insisted, “the study on which the story is based was Dar-
row’s; the opinion is mine.” To drive the point home, he added: “I do
however feel that it should be his as well.”4
In his letter, Moss went on to deconstruct the cluster study, which
had been conducted by Darrow and his colleagues at the US Centers for
Disease Control (CDC) in 1982, during the early phase of that institu-
tion’s response to AIDS.5 The study had been published twice, fi rst as a
brief report in June 1982 and later as a more detailed peer- reviewed arti-
cle in March 1984.6 Moss noted that the study had reported “a ‘cluster’”
3. Ibid. See also the original review: Diane Johnson and John F. Murray, “AIDS with-
out End,” New York Review of Books 35, no. 13 (1988): 57– 63.
4. Moss, “AIDS without End,” 60.
5. For a detailed investigation of the phases of this organization’s growth and its many
name changes, see William H. Foege, “Centers for Disease Control,” Journal of Public
Health Policy 2, no. 1 (1981): 8– 18; Elizabeth W. Etheridge, Sentinel for Health: A History of the Centers for Disease Control (Berkeley: University of California Press, 1992). The institution was fi rst a unit of the Public Health Service, or PHS (Malaria Control in War Ar-
eas, 1942), then an expanded fi eld station of the Bureau of State Services (Communicable
Disease Center, 1946). In 1967 its name changed to the National Communicable Disease
Center, and in 1968 it became a bureau of the PHS. In 1970, the organization regained its
old initials with a name change to the Center for Disease Control, and in 1973 it became a
PHS agency. In October 1980, CDC’s name changed to the Centers for Disease Control; fi -
nally, in October 1992, it became the Centers for Disease Control and Prevention. For sim-
plicity, I will use the acronym CDC throughout.
6. Task Force on Kaposi’s Sarcoma and Opportunistic Infections, CDC, “A Cluster of
Kaposi’s Sarcoma and Pneumocystis carinii Pneumonia among Homosexual Male Resi-
dents of Los Angeles and Range Counties, California,” MMWR 31, no. 23 (1982): 305–
7; David M. Auerbach et al., “Cluster of Cases of the Acquired Immune Defi ciency Syn-
drome: Patients Linked by Sexual Contact,” American Journal of Medicine 76, no. 3
(1984): 487– 92. Further information was also contained in Roger C. Grimson and Wil-
liam W. Darrow, “Association between Acquired Immune Defi ciency Syndrome and
Sexual Contact: An Analysis of the Incidence Pattern,” in Infectious Complications of
Neoplastic Disease: Controversies in Management, ed. Arthur E. Brown and Donald Arm-
strong (New York: York Medical Books, 1985), 221– 27; William W. Darrow, E. Michael
Gorman, and Brad P. Glick, “The Social Origins of AIDS: Social Change, Sexual Behav-
The Cluster Study 79
of 40 cases of AIDS— taken from among the fi rst 248 reported cases of
AIDS in homosexual men in the United States— who had been shown
to be linked through sexual contact up to fi ve years prior to their dis-
playing symptoms suggestive of AIDS (see fi g. 2.1). One man— labeled
“Patient 0”— was “placed at the center of the cluster: the inference is that
he infected the persons who reported having sex with him, they infected
the persons who reported having sex with them, and so on.” Yet, as Moss
would go on to argue, “when the evidence given is examined in detail the
cluster dissolves.” In condemnatory prose, the epidemiologist reduced
the cluster to “a myth” and argued that the study represented “a textbook
example of constructing your empirical evidence to fi t your theory.”7
The cluster study carried out by Darrow and his colleagues drew on
techniques and approaches that were developed during an earlier era
of public health efforts to control sexually transmitted infections with
short incubation periods. Andrew Moss’s criticisms in his letter to the
New York Review of Books say as much about changes in the train-
ing, research focus, and professional self- image of epidemiologists in
the late twentieth century as they do about his disagreement over the
signifi cance of a “Patient 0.” These shifts and confl icts are more easily
under stood in historical perspective. Thus, instead of placing the cluster
study near the beginning of research into the North American AIDS ep-
idemic, this chapter situates that investigation at the end of a longer his-
tory of venereal disease (VD) control. Doing so makes it easier to under-
stand how historical precedent shaped the ways in which the study was
carried out, communicated, and resisted, and how some of the results
worked against the investigators’ stated intentions.
The chapter explores the circumstances that gave rise to the cluster
study and the epidemiological phrase “Patient 0,” and how, over time,
this notion became embellished with new meanings and was rechristened
as “Patient Zero.” It suggests that the modes of professional thought and
practice underpinning contact epidemiology— work that traces infection
from contact to contact through a population— may have worked against
ior, and Disease Trends,” in The Social Dimensions of AIDS: Method and Theory, ed.
Douglas A. Feldman and Thomas M. Johnson (New York: Praeger, 1986), 95– 107; William
W. Darrow, “AIDS: Socioepidemiologic Responses to an Epidemic,” in AIDS and the So-
cial Sciences: Common Threads, ed. Richard Ulack and William F. Skinner (Lexington:
University Press of Kentucky, 1991), 82– 99.
7. Moss,
“AIDS without End,” 60.
80
chapter 2
Figure 2.1 The extended Los Angeles cluster diagram, as it appeared in the American
Journal of Medicine 76, no. 3 (1984): 488; 11 × 13.5 cm.
the aims of the cluster study’s authors. Although William Darrow and
his colleagues at the CDC may not have intended the study to position
“Patient 0” as a source case for the North American epidemic, there ex-
ists, at the root of the cluster approach they used, the desire to trace an
outbreak back to “the source.” Decades of work in VD control had built
faith in certain truths: that sexually active gay men were at high risk of
acquiring and transmitting VD and that the contact tracing method typ-
ifi ed by the “cluster” approach could eventually lead investigators to
the root of an outbreak. In other words, structural forces— in terms of
The Cluster Study 81
the objectives, methods, hypotheses, language, and other aspects of the
working culture of a public health agency such as the CDC— placed con-
straints on the agency of historical actors, restricted their ability to break
from tradition, and contributed to popular misreadings of their work.
The chapter begins with a consideration of general shifts in the fi eld
of epidemiology following the Second World War, and the trends in VD
investigation at the CDC in particular. We will see how the changing un-
derstanding of disease patterns and at- risk populations, as well as the
training of VD investigators, served to build faith in the power of the
contact tracing method, on the one hand, and to pathologize men who
had sex with other men, on the other. In 1981 and 1982, the initial ac-
tivities of the CDC’s Kaposi’s Sarcoma and Opportunistic Infections
(KS/OI) Task Force— made up of many individuals from the organiza-
tion’s VD division— were shaped by these historical legacies. In response
to the appearance of a deadly and unknown condition, previous prac-
tice came together with the CDC’s disease detective tradition to create
a study whose terminology and fi ndings were ripe for reinterpretation in
subsequent years. The fi nal sections of the chapter demonstrate how cer-
tain choices— word selections and decisions about how to visually repre-