Patient Zero and the Making of the AIDS Epidemic

by Richard A. McKay

  Thus, among their many other commemorative functions, these two

  Canadian AIDS memorials served as a symbolic yet durably physical

  means for Tivey and other individuals to mark their silent protest of the

  scapegoating of Gaétan Dugas, which occurred during 1987 and 1988.140

  Bringing in the scapegoat from the desert, washing the communal sins

  from his head, and resolutely giving him a place of remembrance, sur-

  more names have been added since then. To accommodate the large increase in deaths

  later in the epidemic, the plaques for the years from 1993 onward use a smaller font, which

  allows up to eighty names to be included on each plaque.

  139. Tivey, September 9, 2008, recording C1491/44, tape 2, side A; emphasis on record-

  ing. Tivey died in March 2011.

  140. More information on these two memorials can be found online at http:// www

  .aidsmemorial

  .info. Archived captures of a defunct website for the Vancouver AIDS

  memorial can be viewed at http:// web .archive .org/ web/ 20070818223015/ http:// www

  .aidsmemorial .ca/ Home/ Home - 1 .htm. Readers are also invited to visit the websites of

  the NAMES Project AIDS Memorial Quilt (http:// www .aidsquilt .org) and the Canadian

  AIDS Memorial Quilt (http:// www .quilt .ca) to view quilt panels submitted to commemo-

  rate Gaétan Dugas.

  Giving a Face to the Epidemic 243

  rounded by the names of fellow community members— these actions

  speak to a quiet, refl ective, yet powerful rejection of the centuries- old

  practice of exclusion which often accompanies times of crisis.

  * * *

  The idea of “Patient Zero” was marketed around North America over

  a short and sustained period in the fall of 1987 and winter and spring of

  1988. The choice of this story was a deliberate attempt by Shilts’s pub-

  lisher to take advantage of the media’s propensity for exaggeration in or-

  der to promote And the Band Played On, and in that sense the “yellow

  journalism” strategy was successful. The book became a best seller, pro-

  viding a detailed and passionately written account of the fi rst years of

  the American epidemic and raising awareness about AIDS. Less suc-

  cessful, though, were efforts to downplay the signifi cance of the fl ight

  attendant’s role after the publicity had begun. Shilts learned this to his

  continued frustration as he struggled to reorient discussions toward his

  critique of the Reagan administration. Throughout this process, Dugas’s

  name and image were widely circulated, adapted, and reappropriated by

  groups and individuals around the continent for various purposes.

  As soon as Band was released, the idea of “Patient Zero” was mo-

  bilized by social conservatives who saw in it a powerful image of an ir-

  responsible PWA, a rhetorical fi gure for whom they had been search-

  ing for some time. When Shilts provided them with Dugas, the fl ight

  attendant and his alleged sociopathic behavior were used to argue for

  the need of stronger criminal punishments for the sexual transmission of

  HIV. This mobilization was nonetheless contested on several fronts, al-

  beit with limited success. Compared to the resources, connections, and

  coordinated strategy of St. Martin’s Press, as well as those marshaled by

  the political forces that adopted the “Patient Zero” idea, Dugas’s family

  and members of North American lesbian and gay communities had di-

  minished access to the means of cultural production. Nonetheless, they

  attempted, through a range of strategies, to dispute the dominant depic-

  tion of Dugas as “Patient Zero.” These attempts would continue into the

  1990s, as the next chapter will show.

  This chapter closes with a fi nal example of the traveling idea of “Pa-

  tient Zero,” to give a further sense of its ongoing, global peregrinations.

  On October 31, 1992, the president of the American Medical Associa-

  244

  chapter 4

  tion (AMA), the largest and most infl uential organization of American

  physicians, stood before an audience assembled for the Third Japan/US

  Health Care Symposium in Kobe, Japan, to deliver a speech about the

  global threat of HIV/AIDS. His oration offered an occasionally rambling

  mix of familiar statements intended to highlight the medical communi-

  ty’s need to fi ght several battles: against HIV, against the fear of the dis-

  ease, and against the costs that it presented to health- care systems glob-

  ally. To explain to Japanese health- care workers how history had shaped

  the American experience, the AMA president plagiarized Shilts’s his-

  tory, embellishing where necessary. His comments emphasized the po-

  rousness of national boundaries, which permitted the easy fl ow of bod-

  ies, viruses, and scapegoats: “Many today believe the real story started

  with an international airline steward who came to be known as— Patient

  Zero. His story bears lessons for all nations— not the least because it

  shows the terrible damage just one infected person can infl ict on oth-

  ers. Patient Zero was a familiar fi gure in homosexual communities on

  three continents. Highly mobile, crisscrossing the Atlantic. Collecting

  partners with abandon— he carried a deadly virus that was ticking away

  just like a time bomb.”141

  In case his audience was in doubt, the AMA president offered his

  moral assessment: “An innocent he was not. He eventually told health

  investigators that during the 1970s he’d had some 2,500 sexual contacts

  with men in Europe, Canada, South America— and in the large centers

  of gay lifestyle in New York and California. In the later years, he knew

  he had what he called the ‘gay cancer.’ And knew he was passing it on to

  others. Criminal? Demented? No one knows. But we do know he never

  changed his own behavior.” He continued, repeating a by now familiar

  refrain: “The full extent of the damage caused by Patient Zero was never

  determined. He was lost to any CDC follow- up because he was Cana-

  dian and lived in Quebec City. He was only 31 years old when he died,

  but he’d already earned his own sad brand of medical immortality. Be-

  cause he was such a lethal agent of infection, Patient Zero is to AIDS

  in America what Typhoid Mary was to an earlier epidemic.”142 This con-

  cluding scenario offers a compelling example of a powerful narrative

  stripped of its contextual features and exported to a new international

  141. John Lee Clowe, “The Changing World of AIDS: We Are All At Risk,” Vital

  Speeches of the Day 59, no. 5 (1992): 136.

  142. Ibid., 136.

  Giving a Face to the Epidemic 245

  audience. The speaker took for granted the widespread applicability

  and appeal of the story, even while further wrenching it from its original

  settings of time and place. The science supporting the accusations con-

  tained in the statement had long ceased to be persuasive, but the moral

  framing and storytelling power of the idea remained strong. Such ideas

  can travel well.

  Chapter Five

  Ghosts and Blood

  I’m not the fi rst, but I’m still the best,

  Make me true, make me clear,


  Make me disappear.

  —The character of Zero, a ghost, in Zero Patience, 19931

  The focus was not on ‘Gaétan’s a bad guy,’ but . . . about Gaétan as a missed opportunity

  for Canadian public health. — Douglas Elliott, counsel for the Canadian AIDS Society,

  Commission of Inquiry on the Blood System in Canada, 1993– 972

  For lawyer Douglas Elliott and the other participants in the Commis-

  sion of Inquiry on the Blood System of Canada, the work was dif-

  fi cult, and it soon became emotionally draining. In autumn 1993, Can-

  ada’s federal government, facing a mounting barrage of criticism in the

  press, had called for a commission of inquiry into the safety of the Ca-

  nadian blood system. The inquiry, led by Mr. Justice Horace Krever, an

  Ontario Court of Appeal judge, was to “review and report on the man-

  date, organization, management, operations, fi nancing and regulation of

  all activities of the blood system.” Under particular scrutiny were “the

  events surrounding the contamination of the blood system in Canada

  1. Zero Patience, made in 1993 by the Toronto- based Zero Productions, was later re-

  leased on DVD; see Zero Patience, directed by John Greyson (New York: Strand Releas-

  ing Home Video, 2005), DVD.

  2. Douglas Elliott, interview with author, Toronto, August 27, 2008, recording

  C1491/39, tape 2, side B, BLSA. The deposited recording includes the additional inter-

  views the author conducted with Elliott on August 30 and September 6, 2008.

  Ghosts and Blood 247

  in the early 1980s,” when more than a thousand Canadians had been

  infected with HIV as a result of receiving blood products and trans-

  fusions— a breakdown in safety which contemporaries labeled as “the

  country’s worst ever heath- care disaster.” It would later be recognized

  that more than two thousand Canadians had become infected with HIV

  and an additional sixty thousand with the hepatitis C virus through their

  unsuspecting use of the dysfunctional system.3

  Two days of preliminary hearings in November 1993 established

  which groups could be granted standing as interveners— parties with an

  interest in the proceedings who might offer the inquiry a useful perspec-

  tive through their participation. Elliott, whose experiences as a young

  gay man had led him into AIDS activist work in the early 1980s, sought

  and received standing on behalf of the Canadian AIDS Society, an um-

  brella organization of regional AIDS support groups made up predomi-

  nantly of gays and lesbians. After these initial sessions, the intervening

  parties assembled their witnesses and developed their strategies, and the

  commission’s staff commenced the arduous process of requisitioning the

  many thousands of documents that would bear on its work.

  The public hearings commenced in earnest on Valentine’s Day 1994,

  their home base a large room on the twentieth fl oor of the Maclean Hunter

  Building on downtown Toronto’s Bay Street. After a week of introduc-

  tory witnesses, who provided an overview of the complicated network

  of actors making up the Canadian blood system— national institutions,

  governments (federal, provincial, and territorial), regulators, pharma-

  ceutical corporations, hospitals, donors, and individual consumers— the

  3. Horace Krever, “Appendix A,” in Krever, Commission of Inquiry, 3:1081; André

  Picard, “Hearings to Mix Blood, Politics and Drama,” Globe and Mail [Toronto], Febru-

  ary 14, 1994, A5. Picard’s sustained reporting, along with that of his Globe and Mail col-

  league Rod Mickleburgh, undoubtedly contributed to the government’s decision to call

  an inquiry. Alongside the fi nal report produced by Krever and his commission counsel,

  Picard’s book, fi rst published in 1995, is considered the authoritative account of the blood

  disaster: see André Picard, The Gift of Death: Confronting Canada’s Tainted- Blood Trag-

  edy, rev. ed. (Toronto: HarperPerennial, 1998); I have relied on his estimates for the num-

  bers of infected Canadians. In his book’s acknowledgments, Picard cited the “debt of grat-

  itude” that “any journalist” writing on the AIDS epidemic owed to Randy Shilts, whose

  book “set a standard of quality and dedication that is a model for all journalists writing

  about disease in modern society.” This may explain why one of Picard’s book’s chapters,

  “Death Touches Down: AIDS in Canada,” begins and ends with a Shilts- like depiction of

  Gaétan Dugas. See Picard, Gift of Death, vii, 51– 67.

  248

  chapter 5

  commission began to hear testimony from those the system had failed:

  some of the thousands of Canadians who had become sick after receiving

  HIV- and hepatitis C– infected blood. Fears that some of these individu-

  als might not live for long factored into the commission counsel’s deci-

  sion to hear from these witnesses— including infected health- care work-

  ers, transfusion recipients, and hemophiliacs— as soon as possible.

  At the end of the fi rst week of grueling testimony from blood and

  blood product recipients and their family members, Zero Patience, an

  off- beat feature fi lm challenging the myth of “Patient Zero” by Toronto-

  based fi lmmaker John Greyson, began its exclusive hometown engage-

  ment at the small Carlton Cinema.4 The theater was located in the city’s

  gay district near the intersection of Church and Wellesley, a short walk

  from the hearings in the Maclean Hunter building— a high- rise that some

  lawyers participating in the inquiry had darkly christened the “Vampire

  State Building.”5 Soon after the fi lm’s opening, and no doubt in need of

  respite from the hearings’ intensity, Elliott took part in an evening out-

  ing to see Zero Patience, attending with a journalist covering the inquiry

  and Bob Tivey, one of Gaétan Dugas’s friends from Vancouver who had

  since returned to his native Toronto and who would occasionally attend

  the hearings. The lawyer recollected that the fi lm gave them pause for

  thought: “we went out for a beer afterwards and talked about what we

  thought of the movie and about the real Gaétan, and about the Shilts

  book.”6 It seems that this evening was infl uential. Although I am not

  suggesting that Zero Patience inspired Elliott’s strategy at the Krever in-

  quiry, it certainly informed it.

  These two attempts to invert the widely accepted depiction of “Pa-

  tient Zero” that had been presented in And the Band Played On form

  the subject of this chapter. Sharply contrasting in form yet thematically,

  culturally, and geographically overlapping, both efforts emerged in the

  1990s from Toronto, Dugas’s onetime home. At fi rst glance, it may ap-

  pear unusual— indeed, bizarre— to hold Greyson’s fi lm Zero Patience in

  the same analytical frame as the national commission of inquiry on the

  Canadian blood system. The fi rst was a quirky, independent feature fi lm

  musical about AIDS made by a small cast and crew on a shoestring bud-

  4. Based on a search of advertisements in Toronto’s Globe and Mail newspaper, the

  fi lm’s nine- week run at the Carlton reached from February 25 to April 28, 1994.

 
5. Elliott, August 27, 2008, recording C1491/39, tape 2, side B.

  6. Elliott, September 6, 2008, recording C1491/39, tape 1, side B.

  Ghosts and Blood 249

  get of just over $1 million.7 The second was a large- scale state apparatus,

  involving dozens of counsel and support staff, hundreds of witnesses,

  hundreds of thousands of pages of documentation, and costs stretching

  between an estimated $17.5 and $57 million.8 Yet, as I will demonstrate,

  these two arenas were the sites of the two most signifi cant and wide-

  reaching attempts that decade by AIDS workers to challenge the history

  contained in And the Band Played On. By examining their more sub-

  tle similarities and contrasting their divergent approaches, we can gain

  a more nuanced appreciation for the continued use and signifi cance of

  the idea of “Patient Zero” during the last years of the North American

  HIV/AIDS epidemic’s fi rst phase, preceding the rollout of highly active

  antiretroviral therapy (HAART). The chapter’s main questions are as

  follows: In what types of AIDS work did the idea of “Patient Zero” re-

  surface in the 1990s, what new forms did it take, and why? What did

  such an idea illuminate? And to what extent were these challenges to the

  dominant narrative successful?

  This chapter follows historian Jennifer Brier’s approach in grouping

  activities often described separately as AIDS activism and AIDS ser-

  vice provision as “AIDS work” and those involved as “AIDS workers.”

  Doing so recognizes the extent to which the various activities existed

  on a spectrum of politicization, with no straightforward points of divi-

  sion.9 It also allows for the inclusion of the work carried out by a law-

  yer such as Elliott, who was a board member for the AIDS Committee

  of Toronto (ACT) and who represented AIDS organizations and peo-

  ple living with the syndrome, alongside Greyson and individuals like

  him, who might more typically be viewed as activists. Furthermore, tes-

  timony from activists including Ed Jackson and Tim McCaskell suggests

  that the situation in Toronto had managed to avoid the dichotomous split

  between activism and service provision that has been observed in other

  places, most notably New York City.10

  And why Toronto? Intrusive raids by the city’s police force— fi rst on