Patient Zero and the Making of the AIDS Epidemic
Page 52
In Vancouver, Ray Redford recalled that Dugas phoned him in the
second half of 1981 to say that he was one of the gay men in New York
receiving chemotherapy for “gay cancer.” Redford was very worried
about his ex- lover, despite reassurances from his friends “that it was not
serious as it was ‘only skin cancer.’”54 His concern was echoed by one of
Dugas’s contemporaries in New York, who had received a KS diagnosis
that June. In an interview, this man described how KS patients “share[d]
a great need for psychological support . . . [and] to share our questions,
our feelings and our pain.” As gay men who were perhaps facing death,
he emphasized what they required for recovery: “Hope, the will to live,
these are important aspects of the healing process.”55 Redford would
later recall how Dugas continued to draw important support from his
fellow KS patients in New York.
To prepare for his own battle with cancer, Dugas shaved his head
by the spring of 1981, in anticipation of the hair loss that chemother-
apy would bring.56 A studio portrait taken around that time shows a se-
rious, soulful Dugas, with shadowed eyes staring hauntingly at the cam-
era lens and at the viewer (see fi g. 6.2). A mustached lip forms a gentle
smile that is in tension with the serious expression of his eyes. Always
one to lead in fashion and to poke fun at stereotypes, Dugas has his bald
head boldly encircled by a thin band of leopard- print fabric— a nod to
52. Cynthia M. Mathieson and Henderikus J. Stam, “Renegotiating Identity: Cancer
Narratives,” Sociology of Health and Illness 17, no. 3 (1995): 302.
53. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus and Giroux, 1978).
54. Ray Redford, “Notes for Richard McKay,” document attachment in e- mail to au-
thor, October 7, 2010; see Ray Redford, “Reminiscences,” Epilogue.
55. Lawrence Mass, “Cancer as Metaphor,” New York Native, August 24, 1981, 13.
56. Ray Redford, e- mail message to author, January 7, 2008.
Figure 6.2 Gaétan Dugas, 1981; black- and- white photograph, 15.3 × 22.8 cm, scanned im-
age e- mailed to author in January 2008, from Personal Papers of Ray Redford, Vancouver.
(Every attempt has been made to locate the appropriate rights holder of this photograph
of Gaétan Dugas. If you are the rights holder, or have information about this anonymous
work, please contact the author so that proper attribution may be granted in subsequent
editions of this book. Reproduced with permission from Ray Redford and from Rich-
ard A. McKay, who holds rights to the digital image.) Although the photograph appears
to have been professionally produced, no copyright markings appear on the verso. There,
according to Redford, who had received the photo in the mail, Dugas had written: “All
my affection to you Ray, Gaetan [/] June 1981.” It is possible that Dugas’s choice of the leopard- print fabric, while representing a nod to fashion and his enjoyment of nonstan-dard gender displays, was also a playful reference to the spots of his Kaposi’s sarcoma. It
is diffi cult to say: the band may also have been a strategic mask for a lesion. The band’s
Locating Gaétan Dugas’s Views 307
Figure 6.2 ( continued)
pattern highlights the photograph’s narrow depth of fi eld, as it travels on a gentle descent
from full defi nition at the fl ight attendant’s forehead to a more blurred haze by his left
ear. The band’s emphasis on the sphericity of Dugas’s head draws support from the pho-
tographer’s lighting choices, with front and rear illumination from above helping to give
rounded shape and smooth texture, and to separate it from the blurred, patchy, and nonde-
script background. In this photograph, as in his circular representation in the cluster study
diagram, Dugas occupies no discernable place. This portrait of Gaétan Dugas, confronting
a cancer diagnosis, is far removed from the image of the jet- setting fun lover constructed
by Shilts, a verbal image confi rmed by the photograph of his tanned and muscular body,
which reached millions of readers and television viewers across North America in 1987
(see fi gs. 4.2, 4.3, and 4.5–4.7).
the trend in animal print that was en vogue in early 1981— a daring ac-
cessory brightening the traditionally serious image of a cancer patient.57
The seriousness of Dugas’s expression hints at the challenges he would
face as KS became a growing concern in North America’s gay communi-
ties, amid the mounting realization that “gay cancer” was symptomatic
of a far more deadly underlying condition.
Uneven Terrains of Knowledge
Stuart Nichols, a New York– based gay psychiatrist, wrote in the fall of
1982 about the urgent needs facing those who had been diagnosed with
AIDS. “This illness is especially terrifying because there is little medi-
cal understanding of AIDS and no presently effective treatment for it.
The emotional adjustment to such an illness goes beyond what has been
described for other life- threatening diseases, even in otherwise healthy
young adults, in that it frequently necessitates an immediate disruption
in one’s lifestyle with a loss of supportive relationships and a reliable so-
cial network.” He described a support group that he ran for AIDS pa-
tients and articulated the “enormous needs for reassurance and infor-
mation” that new patients felt. “They should be given straight answers,
without hedging, from the medical doctors,” he stated, “and if questions
are not answerable, they should be told so clearly.” Nichols warned that
“misleading information, even slight differences of opinion among doc-
tors, has dramatic impact among patients, intensifying panic, infl aming
suspicions, and diverting valuable energy into unnecessary struggles.”58
57. “Notes on Fashion,” New York Times, June 16, 1981, B14.
58. Stuart Nichols, “For Patients, For Ourselves,” New York Native, October 11, 1982, 15.
308
chapter 6
Against a backdrop of ever- shifting scientifi c hypotheses about the
disease, health activists in lesbian and gay communities across North
America raised the alarm about the serious health crisis between 1981
and 1983. Concerns about KS and the other unusual conditions affect-
ing gay men mounted in New York City through the rest of 1981, with
a concentration of cases and deaths that was initially unmatched in
other cities with large gay populations. After quiet murmurings of a
health problem and gradual efforts by physicians and health offi cials to
alert gay men, San Francisco awoke to the health scare in the summer
of 1982, just as the acronym “AIDS” began its ascendancy to become
the preferred umbrella term for the syndrome. Though many followed
these developments through the gay press and news from friends, mem-
bers of Canadian gay communities in Vancouver and Toronto experi-
enced their own more gradual awakenings in 1983. Typically, gay physi-
cians sounded the alarm, alerted through their various professional and
personal networks of developments in New York and later in San Fran-
cisco and other cities. They held community health fairs and informa-
tion forums, often
in concert with other community members interested
in sexual health. From these initial efforts emerged local AIDS organi-
zations which sought to offer assistance to the affl icted, raise funds to in-
crease awareness and levels of research, and provide public education.59
Looking back on his work to raise awareness in San Francisco, the der-
matologist Marcus Conant likened his role to that of Cassandra, foretell-
ing that “all hell’s going to break loose,” a message that frequently went
unheeded in the early months.60
Many of the early efforts focused on helping physicians identify pa-
tients with KS, a relatively unknown condition, as well as other AIDS-
related diseases, and to warn sexually active gay men to be careful about
the partners they slept with, in case the condition was sexually transmis-
sible. Hamstrung by a lack of research, most of the efforts focused on
raising awareness and prevention, with very little practical information
provided to those who were diagnosed with AIDS. In the absence of
treatment, or even certainty about whether AIDS was rooted in an envi-
ronmental, infectious, or genetic cause, the easiest answer to provide—
59. Silversides, AIDS Activist, 29– 41; Epstein, Impure Science, 53– 66.
60. Marcus Conant and Joseph Robinson, interview with author, San Francisco, July 27,
2007, recording C1491/10, BLSA (Conant quotation at tape 1, side A).
Locating Gaétan Dugas’s Views 309
stop having sex— was often the most diffi cult for many people with AIDS
to put into practice.61
Some of these individuals would lament the lack of consensus and ex-
pertise. Philip Lanzaratta was a New York man with KS who was di-
agnosed in October 1981, received treatment from Friedman- Kien and
Laubenstein at New York University (NYU) Medical Center, and was
a member of Nichols’s support group. Given their shared physicians and
early diagnoses, it is likely that he was among Dugas’s extended network
of fellow KS patients. In early 1982, Lanzaratta described the disconti-
nuities in treatment in New York City, expressing the serious concerns
he and other patients felt that, “with all the establishments and people
involved,” results and information were not being shared: “My feeling is
that patients must ask all the questions that occur to them: What? Why?
How long? Are there alternatives? Certainly all KS patients should re-
alize that, along with the AID (acquired immunodefi ciency) and GRID
(gay- related immunodefi ciency) patients, we are all white rats in one lab-
oratory or another being tested, probed, and monitored.”62 Lanzaratta’s
comments, which categorized KS, AID, and GRID patients separately,
indicate that the patients themselves were not convinced that their con-
ditions were linked, a historical diversity obscured by their subsequent
grouping under the AIDS umbrella from late 1982 onward. Indeed, in
mid- 1982 their doctors were still trying to demonstrate that the condi-
tions were connected by a common underlying dysfunction.63 As one
friend later recalled, Dugas would distinguish his condition from those
who became sick very quickly and died from pneumonia. He would say,
not without reason, “I’m not like them. I don’t have that.”64
Handwritten notes that Randy Shilts recorded in 1986 indicate that
Dugas had experienced fever and noticed “swollen [lymph] nodes since
61. For example, a letter to the community from Gay Men’s Health Crisis and pub-
lished in the New York Native (October 25, 1982, p. 20) summarized the information that
was to be published in a future educational leafl et. It advised sick men to “play fair your-
self! If you know or think or suspect that you have any disease you could give to someone
else, don’t risk the health of others by having sex. Wait until your doctor tells you it’s safe.”
62. Philip A. Lanzaratta, “Why Me?” Christopher Street, April 1982, 15; emphasis in
original.
63. Alvin E. Friedman- Kien et al., “Disseminated Kaposi’s Sarcoma in Homosexual
Men,” Annals of Internal Medicine 96, no. 6, part 1 (1982): 693– 700.
64. Tivey, September 7, 2008, recording C1491/44, tape 1, side B.
310
chapter 6
Jan[uary 19]80.” In May of that year, he had had a biopsy test performed
on a spot by an ear, nose, and throat specialist based in Toronto. The
two pages of notes in question list Montreal addresses for Dugas’s resi-
dence and employer, details of his referral by a local San Francisco walk-
in medical group, and his birth date and social insurance number. They
indicate that in July 1981 Dugas had begun seeing dermatologist Alvin
Friedman- Kien at NYU, where he had been put on a regime of VP- 16
(etoposide), a common chemotherapy drug. He had tried discontinu-
ing chemotherapy in January 1982 and promptly developed ten new le-
sions. By the time Dugas saw Marcus Conant— “Marc saw April 1 ’82,”
the notes indicate— he had not experienced any pneumocystis pneumo-
nia, though he had endured Shigella for a six- month period.65 The early
treatment regimen for KS was time- consuming and exhausting. Lan-
zaratta wrote of the large amounts of time devoted “to receiving che-
motherapy (three days a month), weekly blood tests, shots, and an end-
less battery of other tests.”66 A friend of Dugas would later tell Shilts in
an interview that the fl ight attendant in 1982 “looked terrible on che-
motherapy,” like “death warmed over,” and that he had “lost hair [and]
weight.” This description accords with the self- image Dugas presented in
his January 1982 letter. Nonetheless, his friend continued, Dugas’s “atti-
tude carried him through”; he was “always hopeful” and “kept saying he
would beat it.”67
Bill Darrow, the US CDC investigator, caught up with Dugas later,
on April 23, 1982, when he fl ew to New York City to carry out further
follow- up for the Los Angeles cluster study (as discussed in chapter 2).68
As he did with all the early cluster cases, Darrow fi lled out the man’s in-
65. “Gaton Dagus [ sic],” handwritten notes, ca. 1986, 1– 2, folder 23, box 34, Shilts Pa-
pers. One plausible source for these notes is Marcus Conant, the San Francisco– based der-
matologist who was one of the earliest US campaigners for AIDS awareness and who saw
Dugas as a patient in April 1982. However, the dermatologist emphatically denied that
Shilts could have seen Dugas’s patient records; Conant and Robinson, recording C1491/10
(Conant observation at tape 1, side A).
66. Lanzaratta, “Why Me?” 16.
67. “Simon,” interview notes, p. 3, Shilts Papers.
68. “Trip Report— New York City, April 23, 1982,” William Darrow to KSOI Task
Force Chairman, memo, folder: KSOI: Cases and Contacts in New York City, Darrow
Papers. Shilts reversed the order of Dugas’s meetings with Darrow and Conant in Band,
pp. 136 and 137– 38.
Locating Gaétan Dugas’s Views 311
formation onto a 3– by- 5- inch card with his CDC patient number (57).69
The card provides further details about Dugas’s life, particularly about
<
br /> his movements in the United States. As Patient 57, Dugas reported that
he had moved temporarily to New York City in 1981 for treatment, stay-
ing with a friend who lived several blocks north of Washington Square
Park until February 1982. At that point, Patient 57 had moved to San
Francisco, where he shared a house with a friend at the southern edge of
the Pacifi c Heights neighborhood. The card also recorded that Patient
57 had 250 sex partners in 1979, had encounters with “blacks” and “in
Europe,” and confi rmed sexual contact with fi ve of the CDC’s reported
cases. Darrow wrote that the fl ight attendant was “very co- operative and
will continue to help us”; indeed, the card was overfl owing with informa-
tion. Darrow noted that Patient 57 “consented to having his name used
and picture shown to other cases.”
Of particular interest to Darrow were his visits to New York City and
Los Angeles, the emerging focal points for the epidemic. Dugas, as Pa-
tient 57, estimated that he had made one hundred or more overnight vis-
its to each city since 1974, the year he began fl ying for Air Canada. Hav-
ing drawn on colleagues and gay listings books to build a comprehensive
list of gay establishments in New York, Los Angeles, and San Francisco,
Darrow patiently led the man through the entries, noting any that he
had attended.70 Male, physically attractive, and white, Dugas was able
to glide past the racially and physically discriminatory entrance require-
ments operating at many of these institutions and which drew protests
during this period.71 In New York City, he spent much of his spare time
in lower Manhattan, enjoying visits to the East Village’s Club Baths and
the New St. Mark’s Baths, the Western- themed Boots and Saddle bar
on Christopher Street, and the leather- welcoming Anvil on West Four-
teenth Street. He also spent many nights at the 12 West disco in Green-
wich Village and in the subterranean shadows of the Mineshaft private
members’ sex club. In Los Angeles, Dugas’s favorite nightspots were the
Blue Parrot and the leather- friendly Eagle on Santa Monica Boulevard,
69. “Patient 57,” cluster card [lined paper card summarizing data for patient in the clus-
ter study], Darrow Papers.
70. William Darrow to Pauline Thomas, 25 February 1982, folder: KSOI: Cases and