Patient Zero and the Making of the AIDS Epidemic
Page 60
ular case of “Patient Zero,” events followed a certain trajectory during
2. Hall had enjoyed strong support from the many members of the city’s lesbian and
gay communities for many years and as early as 1987 marched in the annual pride pa-
rade. Weeks after the 2014 candlelight vigil, the city of Toronto renamed Cawthra
Square Park in her honor. See Andrea Houston, “Ford to Pass on Pride, but Barbara
Hall Shows Longstanding Solidarity,” Daily Xtra, June 21, 2011, http://
www
.dailyxtra
.com/ toronto/ news - and - ideas/ news/ ford - pass - pride - barbara - hall - shows - longstanding
- solidarity - 5088; “Park Renaming to Honour Former City of Toronto Mayor, Barbara
Hall,” City of Toronto, July 14, 2014, http:// wx .toronto .ca/ inter/ it/ newsrel .nsf/ bydate/
52ED80777CB64FAB85257D150057C547.
356
Epilogue
the early years of the North American AIDS epidemic, and indeed why
they might again— if left unchecked— follow a similar path in future ep-
idemics. From this understanding— indeed, from this zero hour— I very
much hope that a new cycle of compassion can follow.
This book began with a misleading medical dictionary entry for the
term patient zero, which stated that the US Centers for Disease Con-
trol (CDC) identifi ed this individual as the man who introduced HIV to
North America and who directly infected nearly fi fty other people. Simi-
larly, although suggesting that the tale was a “myth,” for many years the
history page of a widely consulted AIDS reference site simplistically ex-
plained that “Patient O” was “mistakenly identifi ed in the press as ‘Pa-
tient Zero.’”3 These explanations were both incorrect and inadequate.
The media’s role in disseminating the term and the story that carried it
is undeniable and important to recognize. However, solely focusing on
the media implies that scientifi c knowledge is initially “pure” before an
imperfect diffusion through the media’s fi lters results in a contaminated
product. Such a model fails to recognize, for example, the “micropro-
cessing” of the CDC investigators, whose informal discussions shifted
a term from its initial descriptive and abbreviatory function (the let-
ter O) to one intensely infused with cultural signifi cance and multiple
interpretations (the numeral or word zero). As one sociologist of science
has aptly noted, “Scientists often dismiss the way their work is appropri-
ated by the media as oversimplifi ed and distorted. But the relationship
between science and culture is far more complex. For science itself is
a cultural product— a form of knowledge shaped by social assumptions.
Indeed, many of the values expressed in popular rhetoric draw support
from the promises generated by scientists and the language they use to
describe their work.”4 Regarding the way in which CDC investigators
presented the example of “Patient 0,” readers may be divided in their in-
terpretation of one HIV researcher’s comments: “He represented a great
example, and that’s how he got written up as. And calling him ‘Patient 0’
made it sound like the whole epidemic started with him, which was mis-
3. Annabel Kanabus and Sarah Allen, and updated by Bonita de Boer, “The Origin
of AIDS and HIV and the First Cases of AIDS,” AVERT, updated May 12, 2005, http://
web .archive .org/ web/ 20050527223015/ http:// www .avert .org/ origins .htm. A review of web-
site captures gathered between 2000 and 2016 on the Internet Archive indicates that this
account was fi rst posted in May 2005 and remained in place until September 2015.
4. Nelkin, “Promotional Metaphors,” 30.
Zero Hour 357
leading. Did it bother anybody? I don’t think so. The purists would be
upset, but most of us would say, ‘Get the message out. If you have to . . .
take a person as an example to herald the fact that this is sexually trans-
mitted [and] you’d better be careful— it’s fi ne.’”5 These remarks notwith-
standing, we must acknowledge the impact of professional practices, per-
sonal worldviews, and chosen terminology in the work of scientists— and
maintain similar awareness when interpreting the work of policy mak-
ers, journalists, and historians, among others. And we must also re-
main aware of the long- standing cultural narratives that weave their way
through this work and through the matrices of our shared socially con-
structed reality.
* * *
. . . I light this candle as a symbol of love.
I light this candle as a symbol of diversity.
I light this candle as a symbol of justice.
I light this candle as a symbol of solidarity.
I light this candle as a symbol of strength . . .
Many people interviewed for this book explained the attention fo-
cused on “Patient Zero” as a simple expression of a universal human
desire to blame someone else for misfortune. Given the centuries- old
examples of individuals and groups appropriating and recirculating
stories and images about disease spreading to make sense of epidem-
ics, it should not be surprising that these impulses emerged in the early
1980s in response to AIDS. An unexpected turn, perhaps, was the speed
with which this novel manifestation of an old and widely held cultural
trope— that individuals with disease may try to spread it deliberately to
the uninfected— was adopted in several American legal texts of the late
1980s with little empirical support. One reason for the swift uptake of
Randy Shilts’s characterization of Gaétan Dugas as “Patient Zero” ap-
pears to be its simplicity, which offered a far more clear- cut example of
deliberate infection than some cases before the courts in 1987. In this
manner, the way in which many readers readily accepted the “Patient
Zero” story is suggestive of the broad appeal of neat, uncomplicated
5. Jay Levy, interview with author, San Francisco, July 16, 2007, recording C1491/05,
tape 1, side A, BLSA.
358
Epilogue
answers. Given this simplicity, there was also no reason to expect that
the term “Patient Zero” would remain solely associated with AIDS or,
for that matter, with infectious disease. With an effi cient means of pro-
duction and distribution behind it, and encapsulated as an infectious
and easily digested phrase, “Patient Zero,” the idea, has since traveled
widely to new metaphorical and fi ctional settings. An infected computer
used to launch a malicious attack on a network, the fi rst fi nancial institu-
tion to fail in a collapse, or a jihad- fi xated bioterrorist who infects him-
self with a killer strain of zombie plague— all of these examples have in-
herited the title.6 Mostly, users employ the phrase to denote the origins
of an interconnected problem and, to a lesser extent, to signal some de-
gree of blameworthiness.7
Other countries have produced variations of the “Patient Zero” story
in their own national histories of AIDS origins, devoting close attention
to the sexual contacts of the fi rst detected cases.8 These stories deserve
well as some skepticism, given the evolving understanding of HIV in-
fection and the inherent limitations of disease surveillance systems in
detecting an infectious disease that takes years to manifest symptoms.
In some cases, the American story was explicitly exported, as with the
president of the American Medical Association’s uncredited recycling
6. Abhishek Kumar, Vern Paxson, and Nicholas Weaver, “Exploiting Underlying
Structure for Detailed Reconstruction of an Internet- Scale Event” (paper presented at the
fi fth ACM SIGCOMM Conference on Internet Measurement, Berkeley, CA, October 19–
21, 2005), https:// www .usenix .org/ legacy/ event/ imc05/ tech/ full _papers/ kumar/ kumar .pdf;
Luke Mullins, “Rep. John Mica on Fannie/Freddie Special Prosecutor,” The Home Front
(blog), US News and World Report, October 29, 2008, http:// money .usnews .com/ money/
blogs/ the - home - front/ 2008/ 10/ 29/ rep - john - mica - on - fanniefreddie - special - prosecutor
.html; Jonathan Maberry, Patient Zero (New York: St. Martin’s Griffi n, 2009).
7. The success of Malcolm Gladwell’s The Tipping Point: How Little Things Can Make
a Big Difference (New York: Little, Brown, 2000), which likened social change to infectious disease epidemics, has no doubt helped further popularize the term. Gladwell, who
included Dugas among a group of highly sexually active men who “aren’t like you or me,”
drew on Shilts’s misguided characterization of Dugas as “Patient Zero” to explain that
“these are the kinds of people who make epidemics of disease tip” (Gladwell, Tipping
Point, 19– 22).
8. Paula Treichler, Theory in an Epidemic, 355– 56. For example, South Africa’s fi rst
diagnosed AIDS case in 1982 was identifi ed as a “white, homosexual air steward”; Iliffe,
African AIDS Epidemic, 43. Grmek describes the homosexual contacts of “the Soviet
Union’s ‘Patient Zero,’” the “fi rst known patient” in that country; Grmek, History of
AIDS, 191– 92.
Zero Hour 359
of Shilts’s story in Kobe, Japan, or in Germany, where Der Spiegel (the
Mirror) reproduced excerpts of Shilts’s book, along with a picture of
Dugas identifying him as an “AIDS- spreader.”9 Stories and pictures of
“Patient Zero” could also illuminate more complicated transnational
tensions. A Montreal newspaper used the tale to link that city’s host-
ing of the 1989 World AIDS Conference to broader geopolitical frame-
works. The Gazette reported that Dugas’s photo, labeled “Patient Zero,”
was hanging in a university teaching hospital in Lusaka, Zambia. This,
the journalist explained, was suggestive of the view that Canada “gave
AIDS to the world.”10 The example further illustrates how the idea trav-
eled and was adopted and incorporated into increasingly global tides
of blame. Further research may illuminate whether the story cross-
pollinated with accusations of deliberate spreading of HIV that circu-
lated across areas of Africa in the late twentieth and early twenty- fi rst
centuries. The authors of an article describing the results of a continent-
wide fi ctional story- writing competition noted the concerning frequency
of depictions of people living with HIV (PLWH) as “vengeful individu-
als out to infect as many people as possible.” One competition judge in
Madagascar is quoted as saying that it seemed that in some stories “the
only thing that many PLWH do is run around getting revenge by spread-
ing HIV.”11
The “Patient Zero” angle became fi rmly ensconced as a reporting
formula in novel outbreaks of infectious disease. When paranoia was
growing about newly emerging diseases such as Ebola in the 1990s, jour-
nalists sought out information about the fi rst known case subject, call-
ing that individual “patient zero.”12 Indeed, it was during this period that
Mosby’s Medical Dictionary, the medical reference text, fi rst added a
defi nition for the term . The global outbreak of severe acute respiratory
syndrome (SARS) in 2003 reinforced this trend, with extensive media
attention focused on its earliest known case. Much was written about
9. James W. Jones, “Discourses on and of AIDS in West Germany, 1986– 90,” Journal
of the History of Sexuality 2, no. 3 (1992): 450.
10. David Johnston, “Africans Asking: Did Canada Give AIDS to World?” Montreal
Gazette, June 3, 1989, A9.
11. Kate Winskell and Daniel Enger, “A New Way of Perceiving the Pandemic: The
Findings from a Participatory Research Process on Young Africans’ Stories about HIV/
AIDS,” Culture, Health and Sexuality 11, no. 4 (2009): 464.
12. Sam Kiley, “Third Nun Dies as Zaire Tracks Down Killer Virus,” Times [London],
May 13, 1995, 17.
360
Epilogue
the man who infected an elevator- load of people at Hotel Metropole in
Hong Kong, with some reports describing him as “patient zero” with-
out explaining the genesis of the term.13 Although in this instance the
multinational investigative teams employed an alphabetical system
for their reports, referring to this “index patient” as “patient A,” oth-
ers did not follow suit.14 A published account of two SARS outbreaks in
Canada, one in Toronto and the other in Vancouver, assigned the label
“patient 0” to the primary case in each city.15 It seems that no media de-
scription of a response to an outbreak is now complete without including
an account of health authorities’ attempts to locate “the fi rst patient to
contract the virus— the ‘index patient’ or ‘patient zero, in epidemiologi-
cal terms.’”16
Critics have emphasized how a focus on the person- to- person spread
of infectious disease, a narrowed vision encouraged by the “Patient
Zero” story, might obscure other, equally important factors contribut-
ing to the spread of infection. If infectious disease affects the poor dis-
proportionately, and at faster rates, is there not a signifi cant cost to
spending increasing sums of money targeting individuals, rather than al-
locating resources to concrete, community- enhancing measures? High-
lighting the one can draw attention away from the wider ecosystem.17
As the epidemiologist Andrew Moss suggested with regard to the early
AIDS epidemic in San Francisco, “It’s not a matter of one— one— one
time. It’s a matter of what’s going on when it gets there.” He explained
that “whoever brought the virus to San Francisco— not him [Dugas], but
somebody— brought it to a population of fi fty thousand gay men with an
extremely high rate of ‘sexual partner turnover,’ as we say in the busi-
13. Peter Washer, “Representations of SARS in the British Newspapers,” Social Sci-
ence and Medicine 59 (2004): 2561– 71.
14. T. Tsang et al., “Update: Outbreak of Severe Acute Respiratory Syndrome—
Worldwide, 2003,” MMWR 52 (2003): 241– 48, https:// www .cdc .gov/ mmwr/ preview/
mmwrhtml/ mm5212a1 .htm.
15. Danuta M. Skowronski et al., “Coordinated Response to SARS, Vancouver, Can-
ada,” Emerging Infectious Diseases 12,
no. 1 (2006): 156.
16. Shannon Brownlee et al., “Horror in the Hot Zone,” US News and World Report,
May 22, 1995, 57. I explored this material in more detail in my M.Sc. dissertation: Richard
Andrew McKay, “The Emergence of the ‘Patient Zero’ Concept in the North American
AIDS Epidemic” (MSc diss., University of Oxford, 2005).
17. Wald, Contagious, 267; David S. Barnes, “Targeting Patient Zero,” in Tuberculosis
Then and Now: Perspectives on the History of an Infectious Disease, ed. Michael Worboys
and Flurin Condrau, 49– 71 (London: McGill- Queen’s University Press, 2010).
Zero Hour 361
ness. When you drop a sexually transmitted virus in there— you’re going
to have a lot of disease, and many people were eligible for that role. Be-
cause people are coming from here to New York all the time, you know,
and wherever else in the world.”18 The tendency to focus on the individ-
ual, as opposed to the group, may continue in the future, however, since
investigators now have the ability to trace infections through molecular
epidemiologic technologies with capabilities far outreaching those avail-
able to researchers investigating Kaposi’s sarcoma and opportunistic in-
fections in the early 1980s.19
Although there is, among some journalists, an awareness of the risky
oversimplifi cations involved in using the term “Patient Zero” and in
framing a story around such an individual, this cannot be said for the
profession at large.20 When a public health reporter suggested in 2008
that “nobody would dare use that term any more,” he was perhaps opti-
mistically discounting its popularity with readers and its frequently illu-
sory ability to explain a phenomenon.21 During the coverage of the H1N1
epidemic in Mexico in 2009, the narrative was predictably resurrected
when reporters announced that they had discovered “Patient Zero” of
the epidemic, in the form of fi ve- year- old Édgar Hernández. Although
fortunately in this case the child survived, the anguish and confusion of
the Dugas family’s experience can be read in the words of Hernández’s
mother, María, who faced swarms of international reporters in the weeks
following the announcement of the outbreak. “Some people are saying
my boy is to blame for everyone else in the country getting sick,” she told