Patient Zero and the Making of the AIDS Epidemic

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by Richard A. McKay


  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-

 

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