Patient Zero and the Making of the AIDS Epidemic

by Richard A. McKay

  Contacts in New York City, Darrow Papers.

  71. Clendinen and Nagourney, Out for Good, 494– 96.

  312

  chapter 6

  the Studio One disco on Lapeer Drive, and the city’s most popular bath-

  house, West Hollywood’s 8709 Club. Starting in February 1982, he had

  been spending more time in San Francisco, concentrating his attention

  on the Castro and Folsom Street areas. His preferred Castro hangouts

  were cruisy venues including the Midnight Sun, Moby Dick, and Bad-

  lands. He enjoyed dancing at the Haight’s I- Beam disco but more fre-

  quently attended South of Market’s Trocadero Transfer, and often ended

  up nearby at the Hothouse at Fifth and Harrison or in the Club Baths at

  Eighth and Howard.72

  During their hour and a half meeting, Darrow avoided speaking pre-

  scriptively about Dugas’s sexual activity. Although the investigator had

  written his doctoral dissertation on how using condoms reduced the

  spread of sexually transmissible infections among heterosexuals, he re-

  frained from advising Dugas on the possibility of using protection. For

  his work, Darrow knew that he depended on the cooperation of the gay

  community. He feared that by making suggestions about using con-

  doms— a measure associated at the time almost exclusively with birth

  control— he risked being ridiculed by the people with whom he needed

  a strong rapport. Darrow recollected of his conversation with Du-

  gas, “I did not tell him to change his lifestyle, his behavior. I gave him

  no orders. I said, ‘Your life is your private life. We don’t know enough

  now to say that it is sexually transmitted. I have to tell you we could be

  wrong, I could be wrong, but this is what we suspect.’” He recalled that

  the fl ight attendant was “dumbfounded” by the suggestion that his can-

  cer might have been caused by sex and that Dugas appeared to receive

  Darrow’s suggestion as a moral pronouncement on his lifestyle.73 De-

  spite the lack of evidence to support the theory of sexual transmission at

  the time, Shilts’s history would later suggest that Darrow was “surprised

  72. Gay establishment listings for New York, Los Angeles, and San Francisco, Case 57,

  folder: KSOI: Cases and Contacts in New York City, Darrow Papers. Edward Hooper also

  drew on these records in The River, 67.

  73. Darrow, recording C1491/21, tape 1, side B. Dan Turner recalled to Shilts that his

  oncologist, Paul Volberding, had suggested in May 1982 that he begin using condoms;

  “Dan Turner 1– 13– 86,” interview notes, January 13, 1986, p. 12, folder 3, box 34, Shilts

  Papers. In November 1982, the Southern Californian Physicians for Human Rights orga-

  nization was one of the earliest to recommend that gay men use condoms to decrease the

  transmission of viruses potentially linked to the syndrome. A more widespread discussion

  of condom use within the gay community took place in the spring of 1983; see Silversides,

  AIDS Activist, 31; Patton, Inventing AIDS, 42.

  Locating Gaétan Dugas’s Views 313

  that Gaetan hadn’t thought of it before,” and it would be from this date

  that the story of his willful transmission of the virus would often be mea-

  sured.74 In contrast to Shilts’s version, Darrow gave an account of this

  meeting to the authors of The Truth about AIDS— a book which Shilts

  used as a reference for his history. In it, the CDC offi cial noted that

  the man “felt terrible” at the prospect of “having made others sick. . . .

  He had come down with Kaposi’s but no one ever told him it might be

  infectious.”75 The book also quoted Dan William, a gay physician in New

  York, who suggested that Dugas was “living proof of the single- agent

  theory.” William reached this view by midsummer 1982 when the evi-

  dence suggested to him that a single sexually transmissible agent was at

  work.76 As we shall see, the fl ight attendant, like Mary Mallon decades

  before him, would fi nd it diffi cult to give credence to a new medical the-

  ory that used his own body as its strongest evidence.

  When Shilts described Dugas’s confrontation with a panel of speak-

  ers at a public meeting organized by AIDS Vancouver in March 1983,

  he dismissed the fl ight attendant’s reaction as “almost a textbook case

  of denial and anger.”77 Marcus Conant, in an interview, also suggested

  that this resistance to doctors’ advice was denial.78 Yet the reductive

  notion of denial— which implies one’s resistance to accepting an obvi-

  ous truth— makes little allowance for the existence of alternative views,

  expressed by many, of the available evidence of the time. For example,

  from late 1982 onward, two New York men with AIDS, who were also

  members of Nichols’s support group, articulated a signifi cant alternative

  theory to the notion that AIDS was caused by a single virus. Michael

  Callen and Richard Berkowitz, who copublished a popular safe-

  sex

  booklet in early 1983, were heavily infl uenced by the work of their physi-

  cian, Dr. Joseph Sonnabend, who endorsed a multifactorial approach to

  disease causation. The theory suggested that the immune suppression in

  gay men was not caused by a new virus but by a systemic overload of sex-

  ually transmitted diseases (STDs), particularly the repeated reinfection

  74. Shilts, Band, 136.

  75. Fettner and Check, Truth about AIDS, 86; annotated copy in folder 23, box 34,

  Shilts Papers.

  76. Dan William, “If AID Is an Infectious Disease . . . A Sexual Syllogism,” New York

  Native, August 16, 1982, 33.

  77. Shilts, Band, 247.

  78. Conant and Robinson, recording C1491/10 (Conant suggestion at tape 1, side B).

  314

  chapter 6

  of cytomegalovirus (CMV).79 Among the theory’s appealing qualities

  was the prospect it offered for patients to regain their weakened immune

  function if they reduced their exposure to infections.80 “AIDS is a new

  syndrome and there are NO authorities,” declared Callen and Berkowitz

  in a paid November 1982 advertisement in the New York Native for their

  Gay Men with AIDS group. “We believe that it is crucial for us to begin

  to share with others like ourselves our personal experiences in getting

  treatment.” They urged sick men to educate themselves “by going out-

  side the gay press. Get as broad a view and as many different opinions

  as possible.” The advertisement also stated, in block capital letters, that

  “some immunosuppressed gay men who have stopped indiscrimi-

  nate sex are beginning to show signs that their immune system

  is healing.”81

  In an article summarizing an NYU conference on KS that took place

  in mid- March 1983, a journalist for the Medical Post reported the re-

  sults of Bijan Safai, chief of dermatology at the Memorial Sloan Ketter-

  ing Cancer Center, who was treating KS patients with “total skin elec-

  tron beam radiation.” Seventeen of his twenty patients so treated had

  enjoyed complete remission for forty- eight months (the other three died

  within four months). “Despite the ugly purple- colored tumors and ex-

  tensive treatments,” the journalist
quoted Safai as saying, “plus a large

  loss in patient self- esteem once the diagnosis has been made,” half of his

  KS patients “go back to their previous promiscuous lifestyle and acquire

  a new lesion.”82 Based on this summary, one can draw at least two con-

  clusions: fi rst, a number of men with KS in New York continued to have

  sex; and second, it appears that some medical practitioners viewed re-

  turning to a “promiscuous lifestyle” as being a suffi cient cause for a re-

  currence of cancer. Following this logic, one might imagine KS patients

  of the time, like Dugas, fi nding in such studies evidence to support the

  immune overload theory.83 This interpretation of the evidence, in turn,

  79. Berkowitz and Callen, How to Have Sex in an Epidemic, 5– 9.

  80. Joe Wright, “‘Only Your Calamity’: The Beginnings of Activism by and for People

  with AIDS,” American Journal of Public Health 103, no. 10 (2013): 1790.

  81. Gay Men with AIDS, “A Warning to Gay Men with AIDS,” New York Native, No-

  vember 22, 1982, 16. See also Epstein, Impure Science, 58– 66.

  82. Mark Fuerst, “‘Shell- Shocked’ Gays Told ‘Wear Condoms’: Homosexual Practices

  Linked to Kaposi’s Risk,” Medical Post, April 19, 1983, 8.

  83. For example, when interviewing gay men with AIDS in 1984, Lon G. Nungesser,

  who himself had KS, asked Arthur Felson how he thought he had “caught AIDS.” This

  Locating Gaétan Dugas’s Views 315

  could sustain the view that one’s skin cancer was not contagious. By re-

  ducing one’s sexual contacts and attending to other sources of immune

  stress, one could decrease one’s own chances of a recurrence of cancer,

  without having to abstain from sex.

  Such a perspective was moving in opposition to the growing scien-

  tifi c consensus that a single agent, likely a virus, caused AIDS. It was

  not, however, beyond the pale. In October 1983, Edward Brandt, the US

  Assistant Secretary of Health, inquired about this possibility to Jeffrey

  Koplan, the chair of the Public Health Service Executive Committee on

  AIDS, after having read a September supplement to the Medical Tri-

  bune called “Facing AIDS Today.” After reviewing the article, which

  profi led Callen and Berkowitz and their claims of having improved their

  immune function after reducing their exposure to viruses and other in-

  fections, the committee’s response was clear. It concluded “that the im-

  pression of clinical improvement in AIDS after lifestyle alteration is an-

  ecdotal at best and certainly affected by a desire for cure in persons with

  a seemingly fatal illness.”84

  Christos Tsoukas, a Montreal-

  based physician, also attended the

  NYU KS conference in March 1983 where Safai had presented his re-

  sults. Two months later, Tsoukas encountered Dugas on rounds at the

  Montreal General Hospital. He was intrigued by Dugas’s KS, the fi rst

  case he had ever seen, and was struck by his patient’s strongly held be-

  lief that his cancer could not be sexually transmitted. Although he ac-

  knowledged that it had not yet been proven that AIDS was caused by a

  virus, the physician felt suffi ciently concerned to contact Linda Lauben-

  stein, whom he had met at the NYU conference: “I was intrigued by the

  Ka posi’s and the treatment that he was getting because we were seeing

  New Yorker, who was part of an emerging person with AIDS (PWA) empowerment move-

  ment, provided a multifactorial explanation, attributing his personal health crisis to a com-

  bination of dietary, stress- related, and sexual risks, even acknowledging the possibility of a

  genetic component. “I believe I came down with the illness because I was a highly stressed,

  drug- abusing, sexually active man who was nutritionally insuffi cient and who was psycho-

  logically insuffi cient. I may have had a minimum amount of genetic predisposition.” See

  Lon G. Nungesser, Epidemic of Courage: Facing AIDS in America (New York: St. Mar-

  tin’s Press, 1986), 6.

  84. “Facing AIDS,” in “Sexual Medicine Today,” a supplement to Medical Tribune,

  September 14, 1983, 9– 16; attachment to note from Edward Brandt to Jeffrey Koplan, Oc-

  tober 7, 1983, and reply from Koplan to Brandt, October 19, 1983; AIDS Tracer M, folder:

  (1983 Sept.–Oct. FL 2 of 2), box 1, AIDS Correspondence (TRACER) archives, National

  Library of Medicine, Bethesda, MD.

  316

  chapter 6

  other people with Kaposi’s and I wanted to fi nd out what was going on

  in New York. So I remember calling up to speak to Dr. Laubenstein, and

  she talked to me and then for certain things that I wanted to know she

  referred me to the nurses that would care for him, and the funny part

  was that . . . the nurses in New York nicknamed him ‘The Vector.’”85

  The nurses’ reference to Dugas as an agent of transmission echoes a

  concern that motivated Callen and Berkowitz to develop and promote

  a new sexual ethics, one that emphasized a responsibility for one’s own

  health and that of one’s partners. “We must recognize,” they wrote in a

  widely cited New York Native article in November 1982, “the self- hating

  short- sightedness involved in knowingly or half- knowingly infecting our

  sexual partners with disease, only to have that disease return to us in ex-

  ponential form.”86 Berkowitz recalled in a memoir that they had been

  prompted, in part, by the attitude expressed by Philip Lanzaratta at

  their support group.87 For parts of his book, Berkowitz drew on tape-

  recorded conversations with Michael Callen, transcripts of which can be

  found in Callen’s archived personal papers. In one, Callen is recorded

  as saying, “I brought up the subject of sex and Phil Lanzaratta said yes,

  I still go to the baths, I worked all those years on my body and I’m still

  attractive, the lighting is such that there’s this spot on my leg . . .” The

  phrase is left unfi nished, but the implication is that the lesion remained

  unnoticed in the bathhouse’s low light levels. Though describing Lan-

  zaratta as “a complete sweetheart,” Callen recalled being struck by the

  “coldbloodedness” of the man’s reply to Callen’s question about the pos-

  sibility of transmission: “It’s every man for himself, they’ve probably all

  got it anyway, one of them gave it to me and if they’re there they’re tak-

  ing the same chance I took.”88 Although they were initially disturbed

  by Lanzaratta’s remarks, Callen and Berkowitz ultimately recognized

  some of his sentiments in their own thinking and among many of the

  men who attended bathhouses. Troubled, they decided to reframe the

  conversation.

  85. Tsoukas, recording C1491/30, tape 1, side A. See also Shilts’s notes from his inter-

  view with Laubenstein: “Dr Linda,” p. 2, folder 10, box 34, Shilts Papers.

  86. Callen and Berkowitz, “We Know Who We Are,” 29; Berkowitz and Callen, How to

  Have Sex in an Epidemic, 15.

  87. Berkowitz , Stayin’ Alive, 137– 38.

  88. “SONY XB- 60 Microcassette— side a,” p. 7, folder 250, box 9, Callen Papers.

  Locating Gaétan Dugas’s Views 317

  In summary, there was a tension at play during thi
s period, between

  some health workers, who were gradually becoming convinced that

  AIDS was caused by an as- yet- undiscovered virus, and signifi cant num-

  bers of gay men who wanted more proof of transmission prior to mak-

  ing dramatic adjustments to their lives. Many of the latter believed that

  making concessions before being presented with such evidence would

  create personal hardship and irrevocably undermine their hard- won po-

  litical gains from the previous decade.

  Rumors and Hostility

  In July 1983, Time magazine noted ominously, “The AIDS reaction

  has its dark side. The gay culture is awash with rumors of unnamed vic-

  tims who are purposely trying to infect as many others as possible.”89

  This story built on a May 1983 article by Arthur Bell in New York’s

  Village Voice. Bell stated, “Many AIDS victims, particularly those in

  advance[d] stages, literally live at the baths, not only in Manhattan, but

  in San Francisco and Los Angeles. In orgy rooms, dark hallways, and

  dimly lit cubicles, scars and lesions go undetected. The rationale (if there

  is one) among spreaders is ‘I’m going to die anyway. I may as well go

  down happy.’ Or worse: ‘Somebody gave it to me, after all.’”90

  Bell, in turn, had built his story, at least in part, from a remark from

  Richard Berkowitz, who was frustrated that the Village Voice refused to

  publish his and Callen’s writing about AIDS. Berkowitz recalled, with

  regret, a conversation with Bell wherein he had exaggerated the motiva-

  tions of men from his AIDS support group who continued to attend the

  baths without disclosing their health status. Hoping that he might gener-

  ate more concern, he recounted, “I told Arthur Bell, and I had nothing

  to base it on, that there were gay men who were going to the baths be-

  cause it was so dark they could have sex with people without anyone see-

  ing their lesions. And Arthur reported it as fact [ chuckling] in one of his

  columns. And I’m like, ‘Oh Jesus, you know? I shouldn’t have made up

  that little lie.’ [ Speaking loudly] But I was so angry and frustrated that

  89. John Leo, “The Real Epidemic: Fear and Despair,” Time, July 4, 1983, 58.

  90. Arthur Bell, “AIDS Update: Love with the Proper Stranger,” Village Voice, May 10,

  1983, 16– 17.