Patient Zero and the Making of the AIDS Epidemic

by Richard A. McKay

  HIV— an often feared though seldom demonstrated phenomenon. This

  controversial approach was subsequently transferred internationally to

  several western African countries, through the process of “model HIV

  law,” where ready- made legal frameworks were exported abroad as part

  of US- funded development aid. This process has, in turn, been cited as

  an important factor in more recent efforts to further criminalize the

  transmission of HIV.125 Thus, not far below the surface of current global

  the AIDS Consortium, memo [June 1988], folder 4, box 390, Gay Men’s Health Crisis

  (GMHC) Records, Manuscripts and Archives Division, New York Public Library, Astor,

  Lenox, and Tilden Foundations.

  121. Sullivan and Field, “AIDS and Coercive Power,” 196.

  122. Presidential Commission, Report, 130.

  123. Bayer, Private Acts, 254.

  124. Ryan White CARE Act of 1990, Pub. L. No. 101– 381, 104 Stat. 576 (1990), https://

  history .nih .gov/ research/ downloads/ PL101 - 381 .pdf; Raymond C. O’Brien, “A Legisla-

  tive Initiative: The Ryan White Comprehensive AIDS Resource Emergency Act of 1990,”

  Journal of Contemporary Health Law and Policy 7 (1991): 183– 206. White was a young

  HIV- positive hemophiliac who rose to national prominence when he was subjected to in-

  tense discrimination at school based on fears surrounding his disease. He died in 1990.

  125. Richard Pearhouse, “Legislation Contagion: The Spread of Problematic New HIV

  Giving a Face to the Epidemic 237

  HIV politics lurks the legacy of And the Band Played On’s depiction of

  Gaétan Dugas.

  Resistance from North American Lesbian

  and Gay Communities

  Resistance and suspicion were exhibited in several segments of the les-

  bian and gay communities across North America in response to the

  mainstream praise and media attention devoted to Shilts’s book. In New

  York, Michael Denneny’s business partner, Charles Ortleb, skewered

  the book in an editorial note in the New York Native for what he saw as

  its display of the author’s “agenda of self- hate.” He was scornful of the

  fact that when Shilts had arranged to interview him for the book, “he

  told me what role he wanted me to play in the book. I then told him what

  role I had played in reality, which he ignored, because he knows bet-

  ter.” Ortleb had grown increasingly dismissive of the direct link between

  HIV and AIDS and suggested that instead of buying Shilts’s book, read-

  ers should purchase two copies of a new book by Harris L. Coulter that

  explored the links between AIDS and syphilis. In a swipe at both Shilts

  and Denneny, Ortleb ended his editorial with the dig, “‘Patient Zero” is

  the biggest crock since Hitler’s diaries.’”126

  The year 1987 saw the formation of ACT UP, signaling a resurgence

  of activist outrage at injustices for PWAs, not simply in terms of their ac-

  cess to treatment but also in terms of their representation in the media.

  Emerging fi rst in New York, the organization quickly developed chap-

  Laws in Africa” (paper presented at the Seventeenth International AIDS Conference,

  Mexico City, August 6, 2008); Lucy Stackpool- Moore, Verdict on a Virus: Public Health,

  Human Rights and Criminal Law (London: International Planned Parenthood Federa-

  tion, 2008), 13, http:// www .ippf .org/ resource/ Verdict - Virus - Public - health - human - rights

  - and - criminal - law.

  126. Charles L. Ortleb, “Randy Shilts’s Agenda,” NYN, October 19, 1987. Ortleb would

  later lampoon Band in his and Denneny’s other joint publication, Christopher Street, in an article entitled “Scientist Zero,” a piece that criticized the work of the CDC scientist Donald Francis and advanced Ortleb’s view that HIV did not cause AIDS. “Millions of peo-

  ple,” the magazine’s cover read ironically, “believe that HIV is the cause of AIDS. Thanks

  to Randy Shilts, that idea has been traced back fi rst to a cluster group of scientists, and

  then to one single scientist who spread the idea from coast to coast. This is the story of

  Dr. Donald Francis: scientist zero.” See Charles L. Ortleb, “Scientist Zero,” Christo-

  pher Street, March 1989, cover.

  238

  chapter 4

  ters across the country. As mentioned earlier in the chapter and shown

  in fi gure 4.7 there, one of ACT-UP San Francisco’s “zaps” involved its

  organization of a protest against California Magazine, which in Au-

  gust 1988 ran a lurid advertisement, complete with a doctored version of

  the 60 Minutes Dugas photograph, promoting the “kind of investigative

  journalism rarely found in America today.” A fl yer urged members to

  contact California Magazine and “tell them what you think about their

  ‘kind of involving journalism.’”127 The fl yer noted that the theory “was

  dismissed in May by the same doctor who began it. Was there a story in

  California Magazine about that?” Word had begun to spread in activ-

  ist circles about Bill Darrow’s alleged repudiation of the cluster study,

  which British activists had reported in the gay press in April 1988, in

  London.128

  Jon- Henri Damski, a prominent gay journalist and activist from Chi-

  cago, was particularly condemnatory of an article combining an inter-

  view with Shilts and a description of the “Patient Zero” story, which

  appeared on the Chicago Sun- Times’s front page on October 11, 1987.

  He found the title, “Victim Zero,” which the Sun- Times journalist had

  coined, to be particularly galling, given years of efforts by those living

  with AIDS not to be labeled “victims.” Damski deemed it “a total disas-

  ter” that while one of the largest gay and lesbian protest marches in his-

  tory was taking place that weekend in Washington, DC, news of it was

  eclipsed by the mass- marketed “Patient Zero” story. “On the very Sun-

  day we were making history in Washington,” he wrote bitterly, “the Chi-

  cago Sun- Times’ front- page lead story headlined ‘Victim Zero,’ made

  myth of us and people with AIDS.” This statement is suggestive of the

  silences generated by the unequal access to the means of cultural and

  historical production or, in this case, to contributing content to mass-

  circulating newspapers. “It was a book review that wasn’t a book re-

  view,” Damski continued. “It was an opinion piece that wasn’t an opin-

  ion piece; it was soft news, almost porn, placed where a reader expects

  hard news and real fact. It was urban myth replacing journalism.” With

  a faith in scientifi c order that, in retrospect, appears optimistic, Dam-

  127. Shown earlier in the chapter in fi g 4.7; ACT-UP San Francisco, “Stop the spread

  of fear and ignorance!” photocopied fl yer, circa August 1988, folder: AIDS- Related, box:

  Legal Size Ephemera, AIDS Ephemera Collection, Gay, Lesbian, Bisexual, Transgender

  Historical Society, San Francisco.

  128. Crimp, “Miserable Failure,” 120– 27.

  Giving a Face to the Epidemic 239

  ski believed that “if science knew the fi rst person who had AIDS, they

  would have called that person Number 1, Patient 1. He or she would

  have a defi nite number and place in scientifi c history. The ‘V
ictim Zero’

  story is pure urban myth.” The reporter also considered the racial con-

  sequences of such a numbering system, noting that the fl ight attendant

  had, according to the report, acquired HIV from an African in France:

  “That makes Africans and blacks less than zero.”129

  Theresa Dobko, a counselor working for the AIDS Committee of

  Toronto from 1984 onward, echoed this perspective in an interview in

  2008. She recalled having to address the issues raised by the “Patient

  Zero” story in the education sessions she gave to various groups:

  So I remember it coming up and I remember that then our work became very

  diffi cult because we were trying to balance people’s homophobia in saying,

  “No, this is not a gay disease, and no, it’s not spread by people who are in-

  tentionally trying to infect other people.” And then we’ve got all this cluster

  research where they’re trying to fi nd the one source of entry for this, which

  made me quite insane, because I knew it wasn’t going to end up being one

  person, this was far too complex. So I was very frustrated at this sort of at-

  tempt to pin down to the very fi rst person who brought it into North America.

  I found it also really racist, to be honest, too, because why are you focusing so

  much on one person who brought it from one country to another, as if that’s

  somehow more meaningful than all the people in Africa who may have had it

  before the white man who brought it over?130

  Bernard Courte (who would later join the Toronto- based AIDS Ac-

  tion Now!) wrote to French- and English- language news media to pro-

  test against the story. He emphasized in a letter to the mainstream

  Maclean’s magazine that Shilts had distorted the chronology of Dugas’s

  case and that at that time, “no one knew exactly what caused the then

  so- called ‘gay cancer.’” He continued, “Furthermore, even if he is con-

  nected to nine of the fi rst 19 AIDS patients in Los Angeles, how can

  that make him ‘Patient Zero’? What about the other 10 cases? In the

  129. Jon- Henri Damski, “The Victim Zero Story,” Windy City Times, October 22,

  1987, 12. A copy of this story appears in Shilts’s fi les, stapled to Damski’s business card;

  folder 8: Clippings “Scrapbook,” 1987, September– October, box 1, Shilts Papers.

  130. Theresa Dobko, interview with author, Toronto, September 15, 2008, recording

  C1491/49, tape 1, side A, BLSA; emphasis on recording.

  240

  chapter 4

  same line as some Japanese who blame AIDS on Filipino prostitutes,

  or North Americans who try to pin it on Haitians or Central Africans,

  it seems that Shilts wants a foreigner as scapegoat for the 42,000 U.S.

  AIDS cases.”131 In a similar letter he sent to the French Canadian gay

  magazine Sortie, published under the heading “A Scapegoat,” Courte

  faulted Shilts’s speculative construction of the fl ight attendant’s behav-

  ior. He asked why “would Dugas not also have frequented the baths in

  Montreal and Quebec City? Does this mean that he was anglophobic

  (wanting to kill the Anglos)? Or francophobic (not wanting to have re-

  lations with his French- speaking brothers)?” Any hypothesis was pos-

  sible, he explained, yet remained strictly in the realm of the hypothet-

  ical.132 When La Presse, Montreal’s respectable broadsheet newspaper,

  published a front- page article on the story, a Montreal man wrote a let-

  ter to its editor, which he copied to Sortie. He likened this “latest media

  scoop” to the tale of Adam and Eve and condemned the media for hav-

  ing spread an “ignoble, anti- scientifi c, and profoundly ridiculous” story.

  He concluded, “I congratulate the journalists who knew to keep silent in

  the face of this foolishness, and I wish all the necessary courage to the

  family of ‘this Montrealer’ (his identity was reported!) to confront the

  author of this ignominy.”133

  The mainstream media coverage dismayed Bob Tivey, the former rep-

  resentative of AIDS Vancouver and friend of Dugas whom Shilts had in-

  terviewed during his Vancouver visit in 1986. He told a reporter from

  Q Magazine, a Vancouver- based gay periodical, that Shilts had lied to

  him about not using the fl ight attendant’s name in his book. “I don’t

  want to let him get away with this,” he stated, seeing the journalist as

  having exploited the information he gathered to create a sensationalized

  story to sell Band. “I feel he is sort of cashing in, and as a gay man I

  resent that.” Given the success of recent campaigns to raise gay men’s

  131. Bernard Courte, “The Spread of AIDS,” Maclean’s, November 30, 1987, 6.

  132. B[ernard] Courte, “Un bouc émissaire,” Sortie, February 1988, 7; my translation

  of “pourquoi Dugas n’aurait- il pas aussi fréquenté les bains sauna de Montréal et Qué-

  bec? Aurait- il été anglophobe (voulant tuer les Anglais)? Ou francophobe (ne voulant pas

  baiser avec ses concitoyens francophones)?”

  133. André L. Roy, “Un montréalais contamine les USA!’ Sortie [Montreal], November

  1987, 6; my translation of “dernier scoop des medias,” “elle est ignoble, anti- scientifi que et

  profondément ridicule,” and “Je félicite les journalists qui ont su garder le silence face à la

  bêtise, et je souhaite le courage nécessaire à la famille de ‘ce montréalais’ (son identité fût

  rapportée!) afi n de poursuivre l’auteur de cette ignominie.”

  Giving a Face to the Epidemic 241

  awareness of risk factors for AIDS, Tivey highlighted how different the

  situation was from just a few years previously. He urged others not to

  “look back and judge somebody’s actions, because if Gaetan were here

  today he would certainly be behaving a lot differently too.” He also la-

  mented the “wasted energy” of attempting to identify who was “respon-

  sible for AIDS”; as he explained, “There are too many other things that

  need to be done to stop this epidemic.”134

  To counterbalance Shilts’s actions, Tivey took advantage of another

  form of naming as a form of protesting Dugas’s having been singled out

  as separate from his gay brothers. First in Toronto and then later in Van-

  couver, gay activists organized AIDS memorials as a means of honor-

  ing the dead. The Toronto memorial grew out of the profound impact

  the AIDS Quilt and the Vietnam Memorial had made on Toronto ac-

  tivist Michael Lynch when he took part in the March on Washington in

  October 1987. In June 1988, Lynch coordinated the fi rst incarnation of

  the Toronto AIDS Memorial, which appeared as a temporary display

  during the city’s Pride festivities.135 Tivey submitted Dugas’s name for

  inclusion for the memorial in Toronto.136 This would have been in the

  fi rst collection of names, since an early promotional brochure for the

  memorial, requesting additions for 1989, lists Dugas’s name alongside

  nearly three hundred others from the memorial’s fi rst display.137 Even-

  tually, the names would be ordered by year of death, accompanied by

  a year of birth, when known, and engraved on metal plaques mounted

  to a semicircular row of concrete pillars in Cawtha Square Park. Each />
  plaque could hold about twenty- fi ve names; with one death each re-

  corded for 1981 and 1982, these years shared one plaque. For 1983 there

  were twelve deaths recorded on one plaque, and Dugas’s name was one

  of eighteen to be listed on a separate metal sheet for 1984. This would

  also be the fi nal year of the era before highly active antiretroviral ther-

  apy that twelve months of deaths would fi t on a single plaque.138

  134. Ross, “Media Finds Easy Target,” 5.

  135. Michael Lynch, “The Power of Names,” Xtra! [Toronto], February 26, 1988; Silver-

  sides, AIDS Activist, 161.

  136. Robert (Bob) Tivey, interview with author, Toronto, September 9, 2008, recording

  C1491/44, tape 2, side A, BLSA.

  137. “The AIDS Memorial: A Celebration of Life,” folded leafl et, ca. 1988, folder:

  AIDS Memorial Committee (Toronto), Vertical Files: Canada, Canadian Lesbian and

  Gay Archives, Toronto.

  138. I base my count on a visit to the memorial on August 30, 2008. It is possible that

  242

  chapter 4

  Tivey would do the same for the Vancouver memorial in the late

  1990s, a project whose organizers included one of his former boyfriends.

  This memorial would eventually assemble nearly one thousand names

  in random order on several gently curving red steel sheets, located a few

  hundred meters from where Dugas lived in 1983, overlooking the beach

  at English Bay in Vancouver. Refl ecting on the act of remembering and

  the memorials’ signifi cance in 2008, Tivey explained their importance

  to him:

  As we move along and things change and time goes by, there’s not a lot of

  things to remind us, and that’s why we need to have one place to go. Which

  I did when I was out in Vancouver recently. I just sat there, on one of those

  stones in front of the Memorial, and read a couple of plaques, and then had

  to stop and then read some more. I pick out all the people that I knew, but it

  is very important. It’s not to live there all the time, but the need to go back

  and to remember, and, I don’t want those people to ever be forgotten. [ Pause]

  Even though I know eventually [ chuckling], as we all leave this earth, things

  will change but we have to do as much as we can, I think, to keep their spirits

  alive and their names alive.139