Patient Zero and the Making of the AIDS Epidemic
Page 47
continent whose borders were decidedly porous in terms of travel and
trade. Elliott later recalled the transnational dimensions of the inquiry’s
subject matter:
62. Statement of Douglas Elliott, April 20, 1995, Verbatim Transcripts of Commission,
117:25117.
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The AIDS epidemic, the blood business, the pharmaceutical business, it’s all
international. It’s an international problem, so it points out the frailties of na-
tional systems coping with international problems. Armour Pharmaceutical
can come in and sell their product in Canada, and then when something goes
wrong with it, they can say, “Hey, we’re in the USA. You can’t get us here.”
When the patient zero cluster study is being done, a Canadian goes down to
the United States, gives the information, but then the information doesn’t
fl ow back north. I mean it goes to anyone who needs it in the United States
but it ain’t goin’ north of the border. This is one of the things that was high-
lighted for me by this whole tragedy.63
In the early 1980s there existed very little in terms of an offi cial frame-
work to allow cooperation and swift information fl ow, either between re-
gions in Canada or between Canada and the United States, particularly
in a response to a new disease. As the commission would learn through-
out the hearings, the Canadian public health system’s capabilities to re-
spond to new infections were substantially less than that of their Ameri-
can neighbors. Dr. Alastair Clayton, LCDC’s director general from 1979
to 1987, explained the difference to the commission: “Whilst we did the
same sort of things in Canada as they did in the U.S., they were much,
much larger. We were about 150 people and they were 2,000 or more I
believe. And their budget I once worked out was 300 times larger than
ours. So we were never able to do all the things we would like to do, and
they were so often extremely helpful to us.”64 While the CDC had the
staffi ng to redirect a team of nearly a dozen dedicated to the new disease
(though admittedly on a low budget), the LCDC had only Clayton and
Dr. Gordon Jessamine, the chief of the Field Epidemiology Division, as
staff members with any sort of epidemiological training. According to
their colleague, Dr. Richard Mathias, neither of them had any expertise,
however, in “the aggressive management of communicable diseases,”
nor the resources to devote large amounts of time to following up what
appeared at the time to be a small problem.65
Other sources would support the view that LCDC was not proactive
63. Elliott, September 6, 2008, recording C1491/39, tape 1, side B.
64. Testimony of Dr. Alastair Clayton, October 11, 1995, Verbatim Transcripts of Com-
mission, 196:41381.
65. Additional information about the state of the Canadian public health system is
drawn from Mathias, recording C1491/16, tape 1, sides A and B.
Ghosts and Blood 275
in tracking early cases. In early 1982, when asked by Nathan Fain, a
health writer for the Advocate, to confi rm CDC reports that a young
man from Montreal had been diagnosed with Kaposi’s sarcoma in New
York City, Jessamine could only reply that no such case had been re-
ported to him.66 Fain wrote again in May to gain an update on the Ca-
nadian situation. Jessamine responded that, in addition to the fi rst re-
ported case in Canada, which was featured in the March 1982 Canada
Diseases Weekly Report, “other information reaching us indicates that
a young man with immunodefi ciency (I believe) from Montreal was di-
agnosed in New York. I have no further details on this patient.” Jessa-
mine further noted that “lack of resources have not permitted us to fol-
low up more intensively listings of Kaposi’s sarcomata, provided to us
by the Provincial Tumour Registries. This was to be undertaken, but
the epidemiologist involved left us for a position with Environmental
Health.” With only one confi rmed case and three possible ones, Jessa-
mine wrote that “observations and conjectures volunteered on the basis
of the above information, especially with regard to the transmissibility
of the syndrome, would be somewhat out of line and rather unscientifi c.”
Further underlining the scarcity of funding, Jessamine concluded by as-
sessing that “the problem in Canada is rather small (as yet identifi ed)
and it would be diffi cult to dissipate our rather meagre epidemiological
resources when other major problems confront us continually.”67
As it would turn out, the province of Quebec had sent the reports
of its fi rst cases directly to the US Centers for Disease Control (CDC)
in Atlanta, which in time passed the information back to its Canadian
counterparts at the LCDC. On this early list of Canadian patients, case
number 8 was initialed “GD,” though on being questioned, Alastair
Clayton admitted that he did not become aware that this identifi cation
66. Nathan Fain, “Is Our ‘Lifestyle’ Hazardous to Our Health? Part II,” Advocate,
April 1, 1982, 19.
67. Gordon Jessamine to Nathan Fain, 1 June 1982, folder: Fain, Nathan Correspon-
dence, box 1, Lawrence Mass Papers, Manuscripts and Archives Division, New York Pub-
lic Library. The fi rst reported case in Canada to which Jessamine referred was a gay man
in Windsor, Ontario. Reports of earlier cases surfaced in later years, including a Cana-
dian bush pilot who worked in Zaire and died from an AIDS- like condition in 1979, and a
young Haitian man visiting relatives in Canada in 1976 and 1977 who received treatment
for a devastating combination of infections at a Montreal hospital; see “AIDS Killed Cdn.
in ’79,” Medical Post, October 4, 1988, 59; and Richard Morisset, interview with author,
Montreal, July 9, 2008, recording C1491/29, tape 1, side A, BLSA.
276
chapter 5
might signify Gaétan Dugas until reading Shilts’s book many years later.
Clayton explained that “we did not know who [GD] was or where he was
from.”68 LCDC was hampered by its reliance on passive surveillance in-
formation sent by each of Canada’s ten provinces and two territories,
whose regional governments were almost wholly responsible for the pro-
vision of the country’s health- care services. Physicians who diagnosed a
case of a notifi able illness would send a detailed report to the local pub-
lic health authority, which would then forward the information to the
provincial or territorial department or ministry of health.69 Detailed in-
formation such as name, age, sex, and relevant clinical data would be
held at the regional level, but only a consolidated report that listed num-
bers of cases would be sent to LCDC.
Three additional complications further aggravated the ability of
LCDC to coordinate reports and verify cases. First, physicians chron-
ically underreported cases. Second, each province or territory had its
own list of notifi able diseases—and in some cases, most notably that of
Quebec, provinces might not send notices through the appropriate chan-
nels. Finally, altho
ugh there were fi eld epidemiologists to assist the na-
tional offi ce, in a system patterned on the CDC Atlanta’s Epidemic In-
telligence Service (EIS), funding diffi culties meant that there were far
fewer epidemiologists to cover the country than originally envisaged.
When questioned during the hearings about LCDC’s minimal use of ac-
tive surveillance, particularly in the period following the report of the
fi rst Canadian case in March 1982, Jessamine responded that “it is the
norm in Canada. This is the way that all cases of communicable disease
are notifi ed. If we had persisted in getting direct supervision or direct
notifi cation from physicians or if we— I think the provinces would have
disagreed that we were— with us, that we were invading their territory.”70
At one stage in 1982, it appears that respect for regional autonomy,
as well as a recognition of its fi scal limitations, led LCDC to abandon its
national attempts to coordinate surveillance, with a request that provin-
cial epidemiologists report any cases directly to the US CDC in Atlanta,
68. Testimony of Dr. Alastair Clayton, October 13, 1995, Verbatim Transcripts of Com-
mission, 196:41787.
69. For more about the agencies involved in public health in Canada during the 1980s,
see Horace Krever, “The Public Health Environment,” in Krever, Commission of Inquiry,
1:148– 62.
70. Testimony of Dr. Gordon Jessamine, October 11, 1995, Verbatim Transcripts of
Commission, 196:41521.
Ghosts and Blood 277
copying LCDC in on the message.71 In addition, during his testimony,
Jessamine lamented the lack of seriousness with which some provincial
epidemiologists were approaching the situation, as some were resisting
requests to make AIDS notifi able. He claimed that one even responded,
“Ah, this will be over in six weeks, we will forget about it.”72 With these
aforementioned problems impeding its surveillance system, LCDC was
not in a position to be a guardian of the public health system and cer-
tainly not, to return to Elliott’s image, a border guard. Indeed, in the
hearings, the former director general renounced the idea that his organi-
zation could be a “guardian,” settling instead for a role as “monitor” of
the nation’s health.73
Regional Divisions, Professional Networks
Regional efforts show differing levels of awareness of the perceived sig-
nifi cance of “Patient Zero” and were similarly characterized by a lack
of coordination. In Toronto, public health authorities were not aware
that Dugas had spent any time living within their jurisdiction. Accord-
ing to Clayton, a fi eld epidemiologist affi liated with LCDC was sent to
follow up with an individual with the initials “GD” reported in Toronto,
but “unfortunately, she missed him by a short time and we understand
that he went— because he was a fl ight attendant— he went off.”74 In Mon-
treal, two infectious disease specialists who were affi liated with the city’s
hospitals had been alerted by Dr. Paul Wiesner, the chief of CDC At-
lanta’s sexually transmitted disease section, whom they knew from ac-
ademic conferences, that “Patient Zero” had listed Montreal as a base.
These two doctors were subsequently able to verify that Dugas had in
fact been treated locally; they decided, however, that they should not
pass on this information to LCDC since Wiesner had shared it in confi -
dence.75 This informal network might explain, however, the communica-
71. Krever, Commission of Inquiry, 1:197.
72. Jessamine testimony, October 11, 1995, Verbatim Transcripts of Commission,
196:41431.
73. Ibid., 196:41382.
74. Testimony of Dr. Alastair Clayton, October 13, 1995, Verbatim Transcripts of Com-
mission, 198:41787.
75. Testimonies of Dr. Richard Morisset and Dr. Jean Robert, September 23, 1994, Ver-
batim Transcripts of Commission, 77:16534– 41; refer also to the recorded interviews the
278
chapter 5
tion of early Quebec cases directly to the US CDC in Atlanta, bypassing
regional authorities and Ottawa. Two regional health offi cials in Que-
bec at that time testifi ed before the inquiry that they had not been aware
that “Patient Zero” had been treated in Montreal.76 Offi cials in Halifax,
one of Dugas’s bases while he was with Air Canada, had attempted un-
successfully to follow up with Dugas after the fl ight attendant had tested
positive for syphilis; they testifi ed to the Krever commission that no one
from the US CDC had contacted them regarding Dugas’s status as an
AIDS patient.77 Finally, the chief epidemiologist of British Columbia
testifi ed that he had become aware “anecdotally” around January 1983
that the man “subsequently called Patient 0” was residing in British Co-
lumbia, and that “CDC Atlanta had a great deal of interest in him.”78 Al-
though he did not specify in his testimony from which source he received
the information, a journalist present at the hearings reported that a se-
nior member of the CDC had contacted this epidemiologist, urging him
to take action against the man.79
A chance social encounter between a US CDC offi cial and a Van-
couver doctor at an infectious disease conference held in early 1983 in
Waikiki may have prompted this call. As Brian Willoughby, the Vancou-
ver physician who cared for Dugas, later related in an interview, “And,
at the meeting in Hawaii that I went to, Harold Jaffe from the CDC had
been invited to speak and this was after our day of meeting we were hav-
ing a cocktail party. And for what it’s worth, on the twenty- seventh fl oor
of the Hyatt Regency Waikiki, at a cocktail party, Harold Jaffe said to
me: ‘Oh, we have found Patient 0. He’s an Air Canada steward who lives
author conducted with each in July 2008: Morrisset, recording C1491/29; Jean Robert, in-
terview with the author, July 14, 2008, recording C1491/33, BLSA.
76. Testimonies of Dr. Michel Y. Pelletier and Dr. Marc Dionne, September 28, 1994,
Verbatim Transcripts of Commission, 80:17404.
77. Testimony of Dr. Wayne Sullivan, July 27, 1994, Verbatim Transcripts of Commis-
sion, 60:12605– 8. While testifying, this witness hesitated before divulging Dugas’s sexual
health information. The commissioner verifi ed that the patient was dead before urging him
to continue, with the implication that the duty of confi dentiality no longer applied. See also
the commissioner’s earlier statement in which he opined, “It’s an old problem, whether the
obligation of confi dentiality that is owed to a patient survives the death of the patient. That
is not answered the same way in all jurisdictions, but it’s an old problem”; July 14, 1994,
Verbatim Transcripts of Commission, 56:11735.
78. Testimony of Dr. Timothy Johnstone, March 28, 1994, Verbatim Transcripts of
Commission, 23:4272.
79. Picard, Gift of Death, 67.
Ghosts and Blood 279
in Montreal.’ And I said ‘No, no. He moved to Vancouver.’ And Harold
Jaffe said, ‘Oh, lucky you.’”
Willoughby took from this interaction that the CDC was c
onfi -
dent “that you could trace backwards to him, and not very well beyond
him.”80 This anecdote reinforces the impression of the cluster study’s
signifi cance and the role of “Patient 0” communicated by KS/OI Task
Force members through 1982 and into the beginning of 1983. Taken to-
gether, the aforementioned examples illustrate the limitations of the
passive surveillance system in responding to a newly emerging disease.
More important, they demonstrate how informal conversations across
personal and professional networks would supplement, and sometimes
circumvent, the offi cial systems in place.81
Although some readers might question the US CDC’s decision not
to share Dugas’s details with its national counterparts in Ottawa, if it in
fact was in communication with health workers in Montreal and Van-
couver, the legislative framework for such information sharing at this
time was quite limited. International conventions of the time had devel-
oped around marine shipping and travel in the late nineteenth and early
twentieth centuries and not yet adapted to the speed of air travel. These
conventions required reports of only cholera, plague, and yellow fever
to the World Health Organization. In the context of a perceived decline
of infectious disease in resource- rich nations during the mid- twentieth
century, mechanisms for rapidly sharing personal health information be-
tween countries did not exist.82 Thus, when it did move, the information
often fl owed through more expedient unoffi cial channels instead.
80. Willoughby, recording C1491/18, tape 1, side A, BLSA. Jaffe, for his part, recalled
attending the meeting but not this conversation; Harold Jaffe, e- mail to author, June 9, 2016.
81. On this point, see Bayer and Oppenheimer, AIDS Doctors, 109– 12. These examples
also demonstrate the extent to which practices of sharing information relating to individu-
als with AIDS among health professionals has changed considerably in the intervening pe-
riod; on this point see Carol Levine, “Ethics and Epidemiology in the Age of AIDS,” in
Ethics and Epidemiology, ed. Steven S. Coughlin and Tom L. Beauchamp (Oxford: Oxford
University Press, 1996), 241– 44. Indeed, amid concerns by persons with AIDS about their
information, and in line with the codifi cation of guidelines for AIDS research, in Novem-