Patient Zero and the Making of the AIDS Epidemic

by Richard A. McKay

  ing these disparate local groups. Between 1986 and the beginning of the

  Krever inquiry, Elliott took on AIDS- related briefs for the fl edgling

  CAS in addition to his developing specialty in AIDS- transfusion civil

  cases. As the AIDS epidemic grew in Canada and spread beyond the

  large cities where the syndrome was fi rst noticed, the CAS grew as well.

  By the mid- 1990s, the coalition represented roughly one hundred com-

  munity AIDS organizations across the country.46

  In mid- September 1993, the federal government announced its com-

  mitment to a blood inquiry. Simultaneously, the country’s provincial

  and territorial governments announced that time- limited compensation

  packages would be made available to recipients of infected blood.47 El-

  liott was in Ottawa for a previously arranged meeting with the Red Cross

  regarding his own cases involving recipients of infected blood. The meet-

  ing was very brief; the Red Cross was not interested in any further nego-

  tiations in the wake of the recent compensation announcement. With a

  few hours to spend in the country’s capital before returning to Toronto,

  45. Elliott, August 27, 2008, recording C1491/39, tape 1, side B.

  46. D. Steele, “Evolution of Canadian AIDS Society,” 39– 61.

  47. All provincial and territorial governments took part in this announcement apart

  from Nova Scotia, which had already developed its own program. To receive compensa-

  tion, those who had received infected blood and blood products would be required to sign

  waivers promising not to pursue any future lawsuits against the compensating parties,

  which included not only the regional governments but also the Canadian Red Cross Soci-

  ety and a number of insurance and pharmaceutical companies; see Picard, Gift of Death,

  157– 94. It has been suggested that the inquiry was called to defl ect criticism during a gen-

  eral election; see Nicholas d’Ombrain, “Public Inquiries in Canada,” Canadian Public Ad-

  ministration 40, no. 1 (1997): 94.

  Ghosts and Blood 263

  Elliott visited the CAS offi ce and spoke with the organization’s Director

  of Programmes, Russell Armstrong, who was an old friend:

  So we had a little chat, and I explained what was going on . . . and he had

  read the Shilts book. When I talked about the Gaétan Dugas thing, he just

  sort of rolled his eyes and said, “Yeah, I know, but what can we do?” And I

  said, “Well, I think you need to be at this Inquiry.” He said, ‘Well, it’s really

  about [the] Canadian Hemophilia Society— it’s their ballgame.” I said, “Well,

  do you really want them presenting the role of the gay community in respond-

  ing to AIDS?” He said, “Absolutely not” [ Elliott laughing].48

  Elliott received Armstrong’s blessing to represent his organization. At

  the inquiry’s organizational hearings in November 1993, the CAS was

  granted intervener standing and funding, an important point since the

  CAS had no discretionary funds to allocate to such an undertaking.

  A newsletter article distributed during the inquiry summed up the ap-

  proach Elliott would follow, stating the importance of “the social under-

  pinnings of the spread of HIV.” It suggested that homophobia and racism

  had infl uenced the spread of HIV infection through the blood system

  and that the “indifference with which AIDS was treated in the early

  1980s was justifi ed by the institutional parties by the identity of the fi rst

  groups affected by AIDS and their marginalized place in society.” The

  article listed several examples of the effect of homophobia: an unwilling-

  ness of medical directors in the Red Cross to contact gay organizations,

  reluctance to use the word gay in health brochures, a lack of will on the

  part of provincial governments to fund AIDS service organizations be-

  fore the mid- 1980s— given the prevailing view that these were political

  rights groups— and ignoring the work these organizations were doing,

  some of which may directly have served to protect the blood supply.49

  The participation of CAS in the inquiry was controversial in some

  quarters, as a 1994 article in the conservative Alberta Report indicates.

  Subtitled “Gays turn their tainted- blood culpability into an asset,” the

  article lamented the “farce” of the “homosexual lobbying” and its “gay

  48. Recounted in Elliott, August 27, 2008, C1491/39, tape 2, side B. Elliott recalled

  there being a “very bad relationship” between ACT and the Canadian Hemophilia Society.

  49. Patricia A. LeFebour and Douglas Elliott, “Inquiry into the Blood System in Can-

  ada: The Krever Commission,” Canadian HIV/AIDS Policy and Law Newsletter 1, no. 3

  (1995), http:// www .aidslaw .ca/ site/ download/ 9189/.

  264

  chapter 5

  disinformation” at the inquiry’s hearings in the province of Alberta and

  put forth exactly the views that Elliott had feared might be in the major-

  ity. It argued that “gays should themselves accept much of the blame for

  their determined effort to subvert public discussion of the true nature of

  the disease’s transmission” and that “successful lobbying against imple-

  menting . . . standard public health measures was led by militant gays.”

  The article ended with a quote from an epidemiologist in Ontario, who

  offered a condemnatory assessment of the gay community’s guilt: “‘Gays

  gave blood even once they knew they were high- risk. . . . And a lot of

  them were scared they’d get quarantined if it remained strictly a homo-

  sexual disease.’”50 Once again, the centuries- old specter of a group de-

  termined to spread a disease to others had been raised.

  Inquiries as Arenas of Historical Production

  In the absence of an established historiography for the Canadian epi-

  demic, it is not surprising that there were fears that another historical ex-

  planation might fi ll the void. This alternate version, Elliott feared, was

  likely to be the story portrayed in Shilts’s book, where the author dis-

  missed civil rights concerns as “public relations” and offered examples

  of gay community members urging each other to lie about their sexuality

  or to engage in “blood terrorism” if the government did not fund AIDS

  research.51 Elliott’s efforts to seek a place at the inquiry for the CAS

  is signifi cant, as it demonstrates the potential power of popular narra-

  tives to shape high- level interpretations of the “offi cial” history of an ep-

  idemic. Elliott was concerned that the infl uence of And the Band Played

  On would dominate the consciousness of the parties represented in the

  Krever inquiry and that, as in Shilts’s book, many would try to blame the

  gay community for the contamination of the blood supply.52

  50. Joe Woodard, “Bad Blood and Bad Medicine,” Alberta Report 21, no. 21 (1994): 26,

  Academic Search Complete, EBSCOhost (9406077701). Ivan Emke criticizes the tone of

  the AIDS coverage in the Alberta Report during the 1980s, notes the conspiratorial over-

  tones the journal implied in its use of the phrase AIDS “carrier,” and suggests that the

  blood supply is the modern version of the poisoned well; see Ivan Emke, “Around the Bush

&
nbsp; Yet Again: Refl ection on Reckless Vectors, Past and Present,” Sexuality Research and So-

  cial Policy 2, no. 2 (2005): 95– 98.

  51. Shilts, Band, 170– 71, 238, 309.

  52. In his thesis, Steele notes the broad infl uence of Shilts’s book; one of his inter-

  Ghosts and Blood 265

  What I read in his book troubled me on a number of levels, not least of which

  it was describing the American experience and I knew that the Canadian ex-

  perience had been quite a bit different than what it had been in the United

  States. For example, it was very clear when you read Randy Shilts’s book that

  he felt that the leadership in the lesbian and gay community in San Francisco

  had been irresponsible, especially in their opposition to closing the bath-

  houses. And whether that’s true or not, I knew that in Toronto . . . ACT had

  always opposed closing the bathhouses but for very legitimate reasons . . . .

  And I thought, “Oh no, here we go again. Now we got somebody in the in-

  side of the gay community saying that we’re responsible for the AIDS epi-

  demic, after we’ve worked so hard to try and get away from that ‘gay plague’

  stuff.” 53

  This scapegoating of the lesbian and gay community he felt to be par-

  ticularly likely given the absence of any nationally recognized coali-

  tion of gay rights organizations seeking standing in the inquiry. The his-

  tory of AIDS in Canada, not covered in any popular accounts, would,

  he feared, be covered by and subsumed within the Krever inquiry’s in-

  vestigations and fi nal report. It would, he believed, be a disaster to leave

  the creation of this history to the Canadian Hemophilia Society, a group

  with which ACT had not enjoyed a good relationship.54 For Elliott, “one

  of the key issues was to highlight the positive role that the gay commu-

  nity had played in responding to AIDS, and to dispel this notion that

  somehow we poisoned the well, the Shilts thesis, that between irrespon-

  sible community leaders who refused to close the bathhouses, and Ty-

  phoid Marys, like Gaétan Dugas, that we’re the ones who are respon-

  sible for the AIDS epidemic. I was very concerned that we were going

  to be scapegoated, that gay people in general were going to be scape-

  goated and that some individuals like Gaétan were going to be in partic-

  ular scapegoated.”55

  Elliott was not alone in this view. A longtime gay activist, Ed Jack-

  son, who was one of Dugas’s former sexual partners and also a friend

  viewees mentioned that it made a distinct impression on Perrin Beatty, the Minister of Na-

  tional Health and Welfare from 1989 to 1991; D. Steele, “Evolution of Canadian AIDS So-

  ciety,” 21.

  53. Elliott, August 27, 2008, C1491/39, tape 2, side A; emphasis on recording.

  54. Hemophiliacs were also often portrayed in the media as “innocent victims” of HIV

  infection; Patton, Sex and Germs, 23; Emke, “Speaking of AIDS in Canada,” 543– 44.

  55. Elliott, August 27, 2008, C1491/39, tape 2, side B; emphasis on recording.

  266

  chapter 5

  of Greyson, later recalled his partipation in the hearings, where “every

  document” was carefully interpreted:

  There were many vested interests represented there. The room was littered

  with lawyers, all representing some organisation or other whose reputation

  or legal culpability was going to be called into question so they were protect-

  ing each other. You certainly had a sense of the adversarial nature of this.

  The important thing from our perspective was to ensure that the role of the

  gay community was not maligned, was not misrepresented, [and] was made as

  visible as possible in that situation. Because there wasn’t a lot of visible docu-

  mentation before that that people could rely on to counter what might be mis-

  representations or accusations of failure to respond appropriately. You felt

  the ominousness of that. This was important to get it right because it could

  have repercussions later.56

  Gary Kinsman, an activist and academic, voiced similar concerns in

  1997, writing before the release of the commission’s fi nal report later

  that year. Along with the media coverage it generated, Kinsman believed

  that the Krever commission “could establish an offi cial history of AIDS

  that marginalizes the stories of gay men and community activists. This

  is especially the case given that some offi cials in the Red Cross have ar-

  gued— in contrast to the actual safe sex and blood- donation responsibil-

  ity efforts of early AIDS groups— that they could not properly screen the

  blood supply because of supposed ‘resistance’ from the gay community;

  and that they could not implement HIV testing because they feared gay

  men would fl ood the testing with the possibility of infection because of

  the period between infection and the appearance of HIV antibodies.”57

  In addition to sharing these men’s concerns about blame, Elliott be-

  lieved, like Kinsman, that the inquiry would produce the authoritative

  version of the epidemic’s history in Canada. “And I just knew that [gay

  community resistance] wasn’t a true picture of what happened. We had

  been fi ghting AIDS at a time when governments didn’t give a shit, or

  were glad to see AIDS cleaning out the riffraff from the populace. And

  56. Jackson, recording C1491/48, tape 2, side A; emphasis on recording.

  57. Gary Kinsman, “Managing AIDS Organizing: ‘Consultation,’ ‘Partnership’ and

  ‘Responsibility’ as Strategies of Regulation,” in Organizing Dissent: Contemporary So-

  cial Movements in Theory and Practice, 2nd ed., ed. William K. Carroll, 219– 20 (Toronto:

  Gara mond Press, 1997).

  Ghosts and Blood 267

  I, having my history background, I wanted the historical truth on the re-

  cord. And I also realized that this story would never be told again. That

  this was going be the one time that you were going to get the offi cial his-

  tory of Canada’s response to the AIDS epidemic.” Elliott also believed

  that Krever, as commissioner, would “be receptive to this, but that he

  just might not know. So I thought we should be there.”58 Thus Elliott

  sought to challenge “the Shilts hypothesis,” as he put it,59 by attempt-

  ing to insert into the public record the efforts that members of the gay

  community had undertaken in the early 1980s, at a time of sluggish, an-

  tipathetic, or nonexistent institutional responses. One pillar of this strat-

  egy was to present a reconfi gured view of “Patient Zero,” the most sen-

  sationalized character of Shilts’s history and the media response which

  publicized it.

  “A Missed Opportunity for Canadian Public Health”

  In the questions he posed during the inquiry’s hearings, Elliott dem-

  onstrated a novel take on Gaétan Dugas’s role as “Patient Zero.” Like

  Greyson in Zero Patience, he portrayed Dugas not as a recalcitrant dis-

  ease carrier but as a reasonably concerned gay man, willing to assist au-

  thorities with contact tracing in order to offer more information about

  the new disease. In addition, Elliott showed that an AIDS patient, iden-

  tifi ed at an early stage by
the CDC as a person of extreme interest, was

  living in communities across Canada unbeknownst to local health au-

  thorities. In this way, Elliott was able to add to the impression of a coun-

  try with very weak public health surveillance abilities. In the popular

  version of the “Patient Zero” myth, Dugas’s listing of his sex partners’

  names in an address book represented the narcissistic excesses of un-

  restrained gay sexuality. In Elliott’s reformulated version, this address

  book contained key epidemiologic information: names and contact in-

  formation of his sexual partners, all potential blood donors and all po-

  tentially infected with the agent that caused AIDS. In this new version,

  each recorded name represented a chance for offi cials to trace a contact,

  58. Elliott, August 27, 2008, recording C1491/39, tape 2, side B; emphasis on record-

  ing. Elliott had pursued an undergraduate degree in history at the University of Western

  Ontario; Elliott, August 27, 2008, recording C1491/39, tape 1, side A.

  59. Elliott, August 27, 2008, recording C1491/39, tape 2, side A.

  268

  chapter 5

  identify a potential AIDS patient, and prevent him from donating blood.

  In Elliott’s words, “the focus was not on ‘Gaétan’s a bad guy,’ but . . .

  about Gaétan as a missed opportunity for Canadian public health.”60

  The number of times the concept was raised in the hearings suggests

  the importance of the fl ight attendant to Elliott’s strategy. A search of

  the inquiry’s transcripts indicates that the phrases “Patient 0,” “Patient

  Zero,” “Gaetan Dugas,” or similar references to the fl ight attendant

  were raised in at least twenty separate instances during seventeen days of

  the inquiry (see table 5.1).61 This fi nding alone suggests that, more than

  seven years after the publicity surrounding Shilts’s book and more than

  ten years after the fl ight attendant’s death, the “Patient Zero” narra-

  tive retained some important presence in the imagined history of AIDS

  in Canada. Nine mentions occurred during the regional hearings held

  across the country; the remainder took place during the national hear-

  ings, current issues presentations, and fi nal oral submissions in Toronto.

  Since the lawyers representing the intervening groups often pooled their