Patient Zero and the Making of the AIDS Epidemic
Page 17
“of such low rank” to allow them to be open, such as the counterman or the bellhop. See
Maurice Leznoff and William A. Westley, “The Homosexual Community,” Social Prob-
lems 3, no. 4 (1956): 257– 63.
43. US Department of Health, Education, and Welfare, Field Manual, E16.
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response is delivered. A hostile “no” or a labored, thoughtful “no” can
be indicative of a deviant sexual adjustment. A completely heterosexu-
ally oriented person will usually respond with an amused and/or humor-
ous ‘no.’”44 Investigators were encouraged to rephrase the question in a
number of ways if they were answered in the negative, in a manner that
implied to the interviewee:
That the patient needs help with his problem and the interviewer can provide
this help.
That the interviewer has received and handled this confi dence before.
3. That this behavior is quite “normal” for many people.”45
Certainly, an ambivalent tension exists throughout the manual, one
which is perhaps representative of VD control efforts in the penicillin
era. On the one hand, the authors construct the syphilitic patient in gen-
eral, and the homosexual patient in particular, as deviant and pathologi-
cal. On the other hand, they recognize that the investigator will achieve
more success if he appears sympathetic to the patient to gain the infor-
mation he needs. As the CDC- trained head of New York City’s VD in-
vestigators told a reporter in 1961, “We’re not involved in questions of
morality. We don’t judge people. We don’t care who they are or what
they are. No court in the land could get us to give them a name from our
fi les. We have only one job: Find the people who may be exposed, get
them to treatment.”46
Gay and Lesbian Health Activism in the 1970s
While these efforts to control VD were under way, dramatic legal, social,
and cultural shifts in the 1960s and early 1970s continued to thrust homo-
sexuality into the public eye. These changes mounted a challenge to the
previously dominant views of homosexuality as criminal behavior and
psychiatric disturbance, while simultaneously strengthening the link be-
tween venereal disease and gay men. The Canadian government, follow-
44. Ibid., E17.
45. Ibid.
46. Joseph Giordano, quoted in Bernard Gavner, “U.S. Wages War on Rise in VD:
Medical Sleuths Have Job of Tracking Down Disease,” Niagara Falls Gazette, April 23,
1961, 9A.
The Cluster Study 95
ing the lead of the United Kingdom, which in 1967 had partially decrim-
inalized sex between men, implemented law reforms that amended the
Criminal Code in 1969 by removing penalties for sexual contact between
two adult males in private.47 Meanwhile, across North America, a culture
of youth- driven protest surrounding the Vietnam War, women’s rights,
and the civil rights movement contributed to an escalated and more radi-
calized form of confrontation regarding homosexuality. These newly en-
ergized efforts built on the work of the homophile groups that had been
slowly organizing since the 1950s.48 Two of the most powerful symbols of
this trend were the 1969 Stonewall riots in New York City and the 1973
decision by the American Psychiatry Association to delist homosexuality
as a mental illness in the organization’s Diagnostic and Statistical Man-
ual of Mental Disorders. The fi rst served as a rallying point for an in-
creasingly vocal gay liberation movement, while the second called into
question the authority of medicine to label homosexuality as deviant.49
The CDC’s VD control efforts met with mixed results during this pe-
riod. Sexual mores had undergone a profound transformation since the
Second World War, a series of changes catalyzed by the more general
rise of antiauthoritarian protest and the introduction of the birth control
pill.50 The organization’s work to eradicate syphilis fell victim to funding
cuts at the moments when they demonstrated signs of success; despite
some initial progress, it became evident that the 1972 eradication goal
would not be met. The CDC also weathered controversy when leaked in-
formation revealed that it was overseeing the Tuskegee study, which for
forty years had charted the effects of untreated syphilis in black male
patients.51 Despite these setbacks, the organization expanded its VD
control efforts to include an assault on the growing epidemic of gonor-
47. Gary Kinsman, “Wolfenden in Canada: Within and beyond Offi cial Discourse in
Law Reform Struggles,” in Human Rights, Sexual Orientation and Gender Identity in
the Commonwealth: Struggles for Decriminalisation and Change, ed. Corinne Lennox
and Matthew Waites (London: School of Advanced Study, University of London, 2013),
183– 205.
48. D’Emilio, Sexual Politics, Sexual Communities.
49. Martin B. Duberman, Stonewall (New York: Plume, 1994), 169– 212, 224; Ronald
Bayer, Homosexuality and American Psychiatry: The Politics of Diagnosis (New York:
Basic Books, 1981); Minton, Departing from Deviance, 219– 64.
50. Cokie Roberts and Steven V. Roberts, “The Venereal Disease Pandemic,” New
York Times, November 7, 1971, SM62– 81.
51. Jean Heller, “Syphilis Victims in U.S. Study Went Untreated for 40 Years,” New
York Times, July 26, 1972, 1, 8; Reverby, Examining Tuskegee.
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rhea, as well as preventive work with the development of a vaccine for
hepatitis B that involved increasingly close collaboration with the gay
community.52
Bill Darrow continued to work on venereal disease, studying be-
havioral aspects of sexuality that thwarted prevention efforts. His doc-
toral thesis in sociology, completed in 1973, examined the low condom
usage of heterosexual patients attending public health clinics in Sacra-
mento, California, and the associated impact on VD control efforts. He
was part of a team “investigating the source and spread” of a penicillin-
resistant strain of gonorrhea in the United States in 1976, and in 1977
he joined another group studying hepatitis B incidence, prevalence, and
prevention in gay men.53 Darrow’s work on hepatitis B allowed him to
develop collaborative relationships with gay physicians in fi ve US cit-
ies. These medical professionals were part of a wave of lesbian and gay
health activism that emerged in the 1970s and which saw the creation
of health services as an intrinsic part of gay liberation and community
building.54 One of the gay doctors, David Ostrow, who worked at Chi-
cago’s Howard Brown Clinic, provided Darrow with the tip that two gay
liberation activist- journalists, Karla Jay and Allen Young, were in the
process of compiling a study entitled The Gay Report. This study sought
to compile the responses of more than fi ve thousand gays and lesbians
to surveys sent out in a number of American and Canadian gay period-
icals, undertaking, in the authors’ words, not “a ‘scientifi c’ approach to
homosexuality, but rather a personal one.”55 Darrow wrote to Jay to in-
<
br /> quire whether he could undertake secondary analyses of the data related
to sexually transmitted infections and gay men. This self- reported infor-
mation would offer a useful comparative with the existing data, which
had predominantly been gathered from men reporting to public clinics.56
Darrow’s letter to Jay politely and conscientiously indicated that the
sociologist was well aware of the ongoing development and multifaceted
nature of the increasingly public gay world, suggesting that “these data
52. Etheridge, Sentinel for Health, 235– 44.
53. Darrow, “Few Minutes,” 166– 67; William Darrow, interview with author, Miami,
March 28, 2008, recording C1491/21, tape 1, side A, BLSA.
54. Catherine P. Batza, “Before AIDS: Gay and Lesbian Community Health Activism
in the 1970s” (DPhil diss., University of Illinois at Chicago, 2012).
55. Karla Jay and Allen Young, The Gay Report: Lesbians and Gay Men Speak Out
about Sexual Experiences and Lifestyles (New York: Summit Books, 1979), 16.
56. Darrow et al . , “Gay Report on STDs,” 1004.
The Cluster Study 97
may help us develop more effective venereal disease control programs
for the Gay Community (or is it communities?).”57 His “hope that we
will meet and be able to share our observations” was granted: Jay re-
plied with an ebullient enthusiasm, commenting that “the original pro-
spectus probably greatly underestimated how many gay people we could
reach with our efforts, and the number will probably be over 500,000.
Thus, this will be the largest study done of gay people— or probably of
any people!”58 Jay noted that she and Young had already depleted their
publisher’s advance by mailing out the questionnaires and could bene-
fi t from fi nancial support to assist with computer analysis of the survey
results: “Let us know whether your center will be willing to help us. I
don’t have to convince you that this information will be absolutely in-
valuable in understanding the relations between sex acts and incidence
of venereal disease, and in spotting any possible patterns of venereal dis-
ease and hepatitis occurrence across the United States and Canada (per-
haps the Canadian health agency you work with would be interested in
co- funding?).”59
Ultimately Jay wrote to Paul Wiesner, the director of the Venereal
Disease Control Division, and offered the CDC access to coded com-
puter results of the survey at a cost of $7,000. Jay articulated the poten-
tial for venereal diseases to spread beyond gay men— anticipating a ra-
tionale that would be voiced with regard to AIDS a few years later— and
argued that the data would be “of great service to the homosexual and
heterosexual communities alike (since some gay men are not exclusively
homosexual).”60 The agency eventually agreed in 1978, paying $7,202.00
for data from approximately four thousand respondents. This exchange
resulted, ironically, in a US government agency cofunding a project de-
voted to the explicit exploration of diverse gay and lesbian sexual prac-
tices during one of the more virulently antihomosexual periods of the
twentieth century.61
57. William Darrow to Karla Jay, 26 May 1977, folder: Gay Report: responses to sur-
veys, box 22, Karla Jay Papers, Manuscripts and Archives Division, New York Public Li-
brary (hereafter cited as Jay Papers).
58. Karla Jay to William Darrow, 17 June 1977, p. 2, Gay Report, Jay Papers.
59. Ibid., 3; “venereal disease and hepatitis occurrence” corrected from “veneral dis-
ease and hepetitis occurence” in original.
60. Karla Jay to Paul Wiesner, 16 November 1977, Gay Report, Jay Papers.
61. CDC, Contract Order Form #35854, June 1, 1978, Gay Report, Jay Papers. The con-
tract order form took care to stipulate that no personal identifi ers be provided. The CDC’s
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Darrow conducted secondary analyses on these data and was at work
preparing them for publication in February 1981 when, at a regular
meeting, he heard his colleague Mary Guinan report on an unusual case
involving a gay man in New York City.62 The patient had been diagnosed
with disseminated herpes, had very few T cells, and was dying from a
disease of unknown origin. In the years to come, Darrow would make
use of all his previous training and experience to search for a cause and
understand this condition.
“A Jigsaw Puzzle”
When Darrow fl ew out to Los Angeles in March 1982 in response to a
call from his EIS offi cer colleague David Auerbach, he had been consid-
ering the geographic distribution of the early reported cases of Kaposi’s
sarcoma and opportunistic infections in the United States for some nine
months. Since June 1981, reports of young homosexual men affl icted
with unusual illnesses were reaching the CDC with increasing frequency,
predominantly from New York, Los Angeles, and San Francisco. Dar-
row had been co- opted onto the CDC’s KS/OI Task Force soon after its
formation that month, chosen for his many years of work and interview-
ing experience within the CDC’s Venereal Disease Control Division
(VDCD) and his links with gay researchers across the country. The task
force brought together members from various CDC divisions, including
immunology, parasitic diseases, and virology, in addition to a core group
from VDCD. The group’s activities took place under fi nancial strain: the
recent 1981 Omnibus Budget Reconciliation Act had led to staff reduc-
tions at the CDC. Thus, the KS/OI Task Force had been set up on a tem-
forging of ties with gay groups during the 1970s is discussed in Batza, “Before AIDS,”
233– 65; Etheridge, Sentinel for Health, 326– 27. For more on opposition to the gay rights
movement in the 1970s— namely, the much- publicized work of Anita Bryant and John V.
Briggs— see Randy Shilts, The Mayor of Castro Street: The Life and Times of Harvey
Milk (New York: St. Martin’s Press, 1982), 153– 68, 211– 45; Dudley Clendinen and Adam
Nagourney, Out for Good: The Struggle to Build a Gay Rights Movement in America (New
York: Simon & Schuster, 1999), 291– 390.
62. The article would be published in September of that year, in collaboration with Jay
and Young: Darrow et al . , “Gay Report on STDs,” 1004– 11; Darrow, recording C1491/21,
tape 1, side A.
The Cluster Study 99
porary basis within the Sexually Transmitted Disease Division and had
to operate within the division’s existing budget.63
Minutes from an early meeting held on June 10, 1981, suggested
the directions that would steer the group’s later inquiries. Representa-
tives from the CDC’s Center for Infectious Diseases (CID), Center for
Prevention Services (CPS), Center for Environmental Health (CEH),
and the Epidemiology Program Offi ce (EPO) had gathered to discuss
the cases of KS in male homosexuals, prompted by a telephone call on
June 5, 1981, from Alvin Friedman- Kien, which coincided with the fi rst
report in the Morbidity and Mortality Weekly Report ( MMWR) about
pneumonia cases among fi ve gay men in Los Angeles.64 This
cancer spe-
cialist at New York University had phoned to report thirty cases of KS
diagnosed in New York City over the previous two years. In the meet-
ing, James Curran, chief of the Operational Research Branch for VD
Control in CPS, shared reports of additional cases of Pneumocystis ca-
rinii pneumonia (PCP), cytomegalovirus (CMV), Campylobacter, and
severe herpes infection among homosexual men in San Francisco, Palo
Alto, and New York City. David Gordon, an immunology specialist, ven-
tured that immune suppression seemed to be the common factor under-
lying the cases of PCP, CMV, and KS which had been reported, and that
“one or more co- factors would explain the occurrence of these diseases
in homosexuals better than a single specifi c infectious organism such as
CMV.” Harold Jaffe of VDCD responded that “a new, more virulent
strain of CMV might explain the recent clustering,” since CMV in it-
self was thought to be immunosuppressive, and that the “high mobility
in this population would lead to rapid dissemination.”65 Other hypothe-
ses were discussed, including the effects of drugs on immunity, “unusu-
ally high doses” of a virus like CMV, and, more speculatively, “unusual
routes of inoculation of infectious agents, e.g., direct inoculation of virus
into the blood through microfi ssures in the rectum.”66 Thus, from the be-
63. Etheridge, Sentinel for Health, 323– 25.
64. Michael S. Gottlieb et al., “Pneumocystis Pneumonia— Los Angeles.” MMWR 30
(1981): 250– 52, https:// www .cdc .gov/ mmwr/ preview/ mmwrhtml/ june _5 .htm.
65. A recent study had found that 93.5 percent of randomly selected male homosexuals
at a venereal disease clinic in San Francisco showed antibodies to CMV; see W. Lawrence
Drew et al., “Prevalence of Cytomegalovirus Infection in Homosexual Men,” Journal of
Infectious Diseases 143, no. 2 (1981): 188– 92.
66. Dennis Juranek, “Kaposi’s Sarcoma in Male Homosexuals,” memo for the record,
June 11, 1981, pp. 2– 3, folder: AIDS Task Force: 1981, William Darrow’s Professional
100
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ginning, the CDC hypothesized that they were dealing with “unusual”
practices and exposures in relation to these ill homosexual men.
Dennis Juranek of Parasitic Division, CID, and Curran were dis-