Patient Zero and the Making of the AIDS Epidemic

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by Richard A. McKay


  physician about the study. In addition to commenting on the role of age

  as a variable and the high numbers of cluster cases who practiced fi sting

  (manual- rectal intercourse), he remarked that “Patient ‘O’” was “inter-

  esting” and drew what would become a common inference. He pointed

  out that “Patient ‘O’” had a date of symptom onset of November–

  December 1979, while one of his contacts had an onset date of August

  1979, and another contracted PCP in November 1979. The public health

  professional queried, “Is this inconsistent with an hypothesis of ‘O’ as

  source case?”99

  Here, an experienced epidemiologist appears to have interpreted the

  reference to “Patient ‘O’” and this individual’s prominence in the study

  to imply the cluster’s source. It is not surprising, then, that members of

  the media and the public also took away that impression in the news

  coverage that accompanied the study’s publication in March 1984, and

  which emphasized the “mysterious” central fi gure. For example, in an

  interview given to the Los Angeles Herald Examiner, coauthor David

  Auer bach tried to emphasize that “Patient O” was “not the source.”

  (Auerbach’s use of the letter O, which was reproduced in this article and

  the accompanying illustration, suggests that he and Darrow continued

  to refer to this patient by letter when discussing the cluster study in per-

  son, preserving the connection to their original adjectival phrase “Out-

  of- California.”) Auerbach’s efforts were undermined, however, by the

  98. The reports, which appeared in the May 24, May 31, June 7, June 14, and July 3,

  1963, issues of MMWR, were assembled and reprinted in a special edition of the periodi-

  cal in honor of the CDC’s fi ftieth anniversary; see “International Notes— Quarantine Mea-

  sures: Smallpox— Stockholm, Sweden, 1963,” MMWR 45, no. 25 (1996): 538– 45.

  99. Andrew C. Fleck Jr. to David M. Auerbach, 17 May 1983, pp. 3– 4, folder L.A. Clus-

  ter FF! Personal and Professional Papers of Joseph Sonnabend, London (hereafter cited as

  Sonnabend Papers). In this typed letter, it is impossible to distinguish whether Fleck was

  using a number or a letter to designate the non- Californian KS case. However, since he had

  seen Auerbach present the material in person, it seems likely that Fleck, following Auer-

  bach’s oral delivery, would have been using the letter.

  The Cluster Study 113

  article’s disease- detective focus and his evident enthusiasm to be, in the

  reporter’s words, “one of the sleuths who tracked down the mysterious

  ‘Patient O,’ . . . [who was] the missing piece in a puzzle.” Auerbach re-

  marked, “It was real exciting. . . . In two interviews both men spontane-

  ously mentioned to us the name of one man, Patient O . . . I can tell you

  we were both startled.” The former EIS offi cer emphasized the man’s

  perceived importance: “Patient O is at the center of our study. . . . He

  was the link between the West Coast cases and New York. He was the

  key.” The result was decidedly mixed. The article’s text claimed, some-

  what vaguely, that the man “was a link between all 40 cases” and car-

  ried Auerbach’s assertion that he was not the source. The accompanying

  graphic led readers in the opposite direction. While a small disclaimer

  admitted that “Patient O” was “not necessarily the source of the dis-

  ease,” the largest print, apart from the title, was the word at the top of

  the image labeling the central fi gure as “Originator” (see fi g. 2.4).100

  For his part, Darrow took pains to explain to reporters in an inter-

  100. Auerbach quotations in Richard Nordwind, “Doctor Helped Track Down Sex-

  ual Link between Cluster of 40 AIDS Victims,” Los Angeles Herald Examiner, March 28,

  1984, A6. The representation of the cluster shown in fi gure 2.4 has constituted it as a family

  tree, with visual similarities to the “trees of life” used to represent evolutionary relation-

  ships in biology; Theodore W. Pietsch, Trees of Life: A Visual History of Evolution (Bal-

  timore: Johns Hopkins University Press, 2012). The perceived importance of “Patient O”

  has resulted in this individual being defi ned as “Originator,” despite text on the very same

  graphic stating that “Patient O . . . was not necessarily the source of the disease.” This ex-

  ample vividly demonstrates the recurrent desire to fi nd a way of tracing a disease to its ori-

  gins. And even when designated by the letter O and not the number 0, the fi gure seen to be

  centrally important to the cluster collapses back to zero in the context of a family tree be-

  cause the originating line is known as “generation zero” in genetics. Michael Keegan, the

  Herald Examiner’s design director from 1979 to 1985, suggested in an e- mail to the author

  in October 2014 that the image was most likely created by one of the newspaper’s two staff

  artists on short notice and for a quick turnaround, probably in one day or less. The artist

  would have set the image’s type on a photocomposition machine before cutting it out and

  pasting it into position on the drawn diagram. The artwork would then have been engraved

  and placed on a page to undergo letterpress printing. One gay reader who clipped this arti-

  cle for his personal fi les cut out a similar one in the Los Angeles Times. The second article

  designated the central individual as “Patient 0.” The reader stated with excitement, much

  as Randy Shilts would later do, that this was a “fascinating story!” He underlined the ar-

  ticle’s text where it explained: “It appears that Patient 0 transmitted the disease to at least

  two others before he had any signs of it himself, the CDC investigators found.” The reader

  then wrote, on the margins of the paper to which he affi xed the clipping, “So he infected 38

  others when he had signs and symptoms? The guy’s a monster”; “Homosexual Linked to

  40 AIDS Cases May Have Carried Infection,” Los Angeles Times, March 27, 1984, 10 [an-

  114

  chapter 2

  Figure 2.4 Patient O labeled as “Originator” in illustration accompanying newspaper ar-

  ticle. Scan from microfi lmed paper. Richard Nordwind, “Doctor Helped Track Down Sex-

  ual Link Between Cluster of 40 AIDS Victims.” Los Angeles Herald Examiner, March 28,

  1984, A6. The image’s original printed size would have been roughly 17.5 ×13.5 cm, cover-

  ing approximately half the width of one newspaper page.

  view that “Patient 0” was probably not the fi rst patient to get AIDS,

  suggesting that the man was an “unwitting carrier” who “may have un-

  knowingly spread the disease across the country.” An Associated Press

  reporter explained, “Darrow thinks Patient 0 picked it up from a contact

  in Los Angeles or New York and then carried it across the country to the

  others.” The reporter quoted Darrow as stating, “One of the problems

  we had, of course, was determining the source of the infection and the

  spread.”101 The terms source and spread had been used by VD investiga-

  notated clipping]; in untitled folder, box 5, Frank Robinson Papers, GLBT Historical So-

  ciety, San Francisco.

  101. Paul Raeburn, “40 AIDS Cases in 10 Cities Link
ed to One Carrier,” Associated

  Press newswire, March 27, 1984, LexisNexis News. In this instance the reporter followed

  the published study’s use of the number zero in numeral form.

  The Cluster Study 115

  tors at least as early as the 1940s to denote the order of infection among

  cases. A handbook produced in 1945 wisely cautioned these health work-

  ers not to ask the patients being interviewed “Who gave you VD?” (the

  “source contact”) or “To whom did you give VD?”(the “spread contact”)

  since the two were often diffi cult to distinguish in practice. The hand-

  book also noted that such an approach “diverts the patient from the im-

  portant objective of naming all contacts.”102

  In retrospect, Darrow also believed that the designation “O” is where

  a number of people were led astray:

  I didn’t start using the term “Patient 0” until other people had used it, and I

  don’t— it probably came from CDC, but I don’t know who did it, you know,

  who the fi rst one was. But probably when they wrote it down “Patient O,”

  they went around talking to one another about “Patient 0” and so that’s how

  he got his name. . . . Because everybody said that this is “ground zero,” you

  know, this is how the epidemic started, and I want you to know that I never

  said that he was the fi rst case in the United States, that he brought . . . this

  condition to America. He may have brought it to Los Angeles, there’s a pos-

  sibility that could have happened— that these other men would have never be-

  come infected if they hadn’t had sex with him— but certainly they had other

  sex partners who may have been the source of their infection.103

  CDC investigators would later express surprise at the resilience of the

  phrase “Patient Zero” and the generalized assumption that the man de-

  noted by the term represented the origin of AIDS in North America.

  Darrow would note that “there’s a conventional wisdom that he started

  the whole epidemic, but that’s not true. . . . Nobody said he was the fi rst

  case.”104 Though strictly true, such statements downplay the contribu-

  tions to this misunderstanding made by the CDC’s eventual— and largely

  accidental— use of the phrase “Patient 0,” and, as we shall see, the visual

  depiction of the cluster. Indeed, KS/OI Task Force members may have

  inadvertently shaped the welcoming public reception of “Patient 0” by

  102. S. W. Evans, VD Case- Finding Manual: For Use in Training Programs, trial ed.

  (Raleigh, NC: VD Education Institute, 1945), V- 5; emphasis in original.

  103. Darrow, recording C1491/21, tape 1, side B; emphasis on recording.

  104. Wyatt Olson, “The Protection Racket: And the Band Plays On,” Broward- Palm

  Beach New Times, February 2, 2006, http:// www .browardpalmbeach .com/ 2006– 02– 02/

  news/the- protection- racket/.

  116

  chapter 2

  furnishing him with an “infectious” name.105 Randy Shilts later recalled

  being alerted in 1982 to the likelihood of a sexually transmissible caus-

  ative agent through the fi rst publication of the cluster study. Later, in the

  course of researching his book on the history of the American AIDS ep-

  idemic, he was also struck by the term’s sensational potential after con-

  sulting with CDC researchers. As Shilts related in an interview, “In the

  middle of that study was a circle with an O [letter] next to it, and I always

  thought it was Patient O. When I went to the CDC, they started talking

  about Patient Zero. I thought, Ooh, that’s catchy. ”106 At the very least,

  Shilts’s response ought to serve as a cautionary tale of the risks of using

  “catchy” promotional metaphors in scientifi c publications.107

  Reception and Reproduction

  As soon as the initial reports of the ongoing cluster investigation were

  published in June 1982, gay community groups, physicians, and pub-

  lic health offi cials relayed the information. The New York– based Gay

  Men’s Health Crisis included a stop- the- presses announcement regard-

  ing its implications in the organization’s fi rst newsletter about “Ac-

  quired Immune Defi ciency”— which it abbreviated as AID— printed in

  July 1982: “The upshot of this information is that one or more infectious

  agents— germs, microbes, viruses, bacteria— were likely passed through

  sexual contact from one gay man to another in [Los Angeles and Orange

  Counties] and from there on to men in possibly 16 more cases in eight

  other cities.”108

  The study reached national prominence again in February 1983 when

  a New York Times feature on AIDS highlighted the Los Angeles cluster

  105. The process by which “Patient O” became “Patient 0” brings to mind the “micro-

  processing” described by Bruno Latour and Steve Woolgar in Laboratory Life: The Social

  Construction of Scientifi c Facts (London: Sage, 1979), 151– 86. Playing on one synonym for

  the word computer, Latour and Woolgar defi ne microprocessing as the manner in which

  the day- to- day interactions of the laboratory lead to the production of a scientifi c “fact.”

  106. Jeff Yarbrough, “The Life and Times of Randy Shilts,” Advocate, June 15, 1993,

  37; emphasis in original.

  107. Dorothy Nelkin, “Promotional Metaphors and Their Popular Appeal,” Public Un-

  derstanding of Science 3, no. 1 (1994): 25– 31.

  108. Gay Men’s Health Crisis, “Late Evidence on Contagious Causes,” G.M.H.C.

  Newsletter 1 (July 1982): 2.

  The Cluster Study 117

  and explained that, “later, a missing link was found between Los Ange-

  les and New York.”109 The next month, in San Francisco, a reporter inter-

  preted the use by local physicians of the cluster and this “missing link”

  as two separate examples demonstrating the infectious nature of the dis-

  ease. At a meeting held to alert gay men to the threat of AIDS, Marcus

  Conant, a dermatologist who played an active role in mounting the city’s

  response, explained that the incubation period for the syndrome now ap-

  peared to stretch to eighteen months. As far as evidence for a sexually

  transmissible causative agent, Paul Volberding, his oncologist colleague

  at the Kaposi’s Sarcoma Clinic at the University of California– San Fran-

  cisco— a group in close contact with the CDC— explained that nine of

  nineteen AIDS cases in Los Angeles had had sex with one another. The

  reporter noted that Volberding also cited the example of “a Canadian

  man who traveled frequently between the coasts of the United States . . .

  [who] came down with AIDS,” as did some of his sexual partners.110

  In mid- 1984, Michael Callen, the New York AIDS activist, wrote to

  Mervyn Silverman, chief of the San Francisco Department of Health, to

  ask about that city’s ongoing bathhouse deliberations. Silverman replied

  that “three important published epidemiological papers” had guided

  the decision making of the city attorney’s offi ce and the health depart-

  ment to focus on “decreasing multiple anonymous sexual partners.” A

  case control study in New York led by Michael Marmor and another by

  the CDC had both “showed that the gre
ater the number of sexual part-

  ners the higher risk for the onset of the disease.” He added that the LA

  cluster study was also “considered important,” since it established sex-

  ual links between a number of cases. “This,” Silverman explained, “was

  consistent with the infectious etiology of AIDS.”111

  Some members of the gay community were also convinced by the

  study. As Randy Shilts recollected, “The L.A. Cluster Study made it

  very clear that we were dealing with a sexually transmitted disease. Be-

  ing a gay man, I could see what that meant, and in 1983 I started get-

  109. Robin Marantz Henig, “AIDS: A New Disease’s Deadly Odyssey,” New York

  Times, February 6, 1983, SM30.

  110. Wayne April, “Doctors Brief ‘Gay Leaders’ On AIDS,” Bay Area Reporter [San

  Francisco], April 7, 1983, 3, 18.

  111. Mervyn Silverman to Michael Callen, 25 July 1984, p. 1, folder: Merv Silverman,

  Correspondence Out, 1984, Carton 1, San Francisco Department of Public Health AIDS

  Offi ce Records (SFH 4), San Francisco History Center, San Francisco Public Library.

  118

  chapter 2

  ting very heavy into AIDS coverage at the Chronicle. ”112 Neil Schram, a

  gay physician based in Los Angeles, later recalled the importance of the

  study for him, particularly in the absence of an antibody test:

  My view was that people could change behavior without an antibody test. Be-

  cause I had. And I fi gured if I had, everybody could. . . . I had changed my

  behavior in ’82, when what’s- his- name, David Auerbach, from the CDC, had

  reported in Orange County that something like 16 of 21 gay men who devel-

  oped AIDS had had sex with each other. That was the day I knew, one, we

  were in trouble and, two, this was a sexually transmitted disease. No mat-

  ter what anybody said after that. And I changed my behavior . . . I fi gured if I

  could do it, then everybody could do it, and they didn’t need an antibody test

  to do it.113

  Not everyone, however, was satisfi ed by the study’s conclusions or its

  methods. Joseph Sonnabend— a New York- based physician who had be-

  gun to treat a number of KS/OI patients and who would later go on to

  question the singular role of the virus in AIDS— was an early proponent

  of a multifactorial model of AIDS causation. He was concerned by the

 

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