patched to New York City the next day to gather more information.
They interviewed a number of private and hospital physicians, includ-
ing Friedman- Kien, and were able to establish, based on cancer registry
and hospital records, that a real increase in the number of KS patients
seemed to be occurring in New York City. Their report also indicated
an early estimate of illness duration: “The median duration of illness
from time of presentation for those who died was 15 months (mean
13 months); for patients living the median duration was 10 months (mean
12 months).”67 This information would prove important in infl uencing in-
vestigators’ ongoing conceptions of the syndrome, as it would shape sub-
sequent estimates of disease duration and later suggest a shorter incuba-
tion period (as opposed to one lasting several years).68
The task force decided that its fi rst major effort was to be a case con-
trol study, to gather more information on what was different about the
cases of the apparently new syndrome. In meetings and correspondence
in July and August 1981, members debated how best to set a case defi ni-
tion, select cases, and undertake the more challenging aspect of choos-
ing appropriately matched controls. They also attempted to make sense
of the preliminary data they had gathered in early case interviews un-
Papers, Miami (hereafter cited as Darrow Papers). There was some evidentiary basis for
such speculation, given the knowledge that some infectious agents (for instance, anthrax)
produced different host responses depending on the inoculation route; see Wilhelm S. Al-
brink et al . , “Human Inhalation Anthrax: A Report of Three Fatal Cases,” American
Journal of Pathology 36, no. 4 (1960): 457– 71. At the same time, the researchers’ guess-
work was suggestive of the lack of knowledge about and antipathy toward homosexual
practices that characterized many parts of the medical and scientifi c establishment in the
early 1980s and before.
67. James W. Curran and Dennis D. Juranek, “Trip Report— Kaposi’s Sarcoma in New
York City,” memo, June 17, 1981, pp. 1– 3, folder: AIDS Task Force: 1981, Darrow Papers.
68. Since KS presents after a lengthy subclinical period of HIV infection and the pres-
ence of a separate herpes virus, the “faster” course of the illness is thought to have been
due to the fact that the immune defi ciency was recognized at a relatively late stage. Some
clinicians, though, were of the opinion that the patients falling ill in the late 1970s and
early 1980s had a more virulent form of HIV infection, which killed patients more swiftly.
See, for example, Reminiscences of Dan William, 1996, pp. 77– 79, Physicians and AIDS
Oral History Project, Columbia Center for Oral History Archives (CCOHA), Columbia
University in the City of New York.
The Cluster Study 101
dertaken since June. They decided that the “likely strong association
of these disorders with active homosexual men” was most suggestive of
“environmental and/or behavioral factors as the primary cause(s).” They
acknowledged that genetic factors might play a role in “determining sus-
ceptibility among homosexual men,” but those factors were unlikely to
provide an explanation for the noted increase in cases or for the concen-
tration of the disorders in this population group.69
The clues guiding the construction of the case control study, gathered
in the early interviews, noted the concentration of cases in New York City
and California (“Undoubtedly there is a bias in reporting, but what hy-
potheses would this geographic concentration suggest if it is real?”). Also
of note was a larger number of sexual partners than expected from com-
parison with other data such as the Jay– Young set (which Darrow had
provided), a frequent use of nitrite inhalants, the overt nature of their ho-
mosexuality (“These men are not ‘new’ to the homosexual lifestyle, nor
do they seem to currently lead ‘dual’ lives”), and a high level of education
(“They do not seem to be lower SES [socioeconomic status]”). The group
members were puzzled by reports of related cases (“What about the re-
port of 3 cases of PCP in a family?”) and what such relationships might
suggest about an incubation period. They also discussed cases occurring
in women and heterosexual men (“Why no KS? (or only one case)”), and
PCP occurring in “drug addicts.”70 Based on these clues and the questions
they raised, the task force settled on the following working hypotheses:
1. An environmental agent (microbial or chemical) is causing lasting immu-
nosuppression among homosexual men. As an intermediate variable, im-
munosuppression is rendering some of these men susceptible to OI’s and
allowing the expression of KS.
69. James W. Curran, “Case Control Study Issues and Hypotheses,” memo and attach-
ment, August 11, 1981, p. 1 of attachment, folder: AIDS Task Force: 1981, Darrow Papers;
emphasis in original.
70. Ibid., pp. 1– 2 of attachment; emphases in original. The scientifi c and medical re-
search communities would later face criticism for their delay in incorporating the fi rst fe-
male and injecting drug user cases into their initial response to AIDS, which focused pri-
marily on homosexual men; see, for example, Treichler, “AIDS, Gender, and Biomedical
Discourse,” 190– 266; Gerald M. Oppenheimer, “Causes, Cases, and Cohorts: The Role
of Epidemiology in the Historical Construction of AIDS,” in AIDS: The Making of a
Chronic Disease, edited by Elizabeth Fee and Daniel M. Fox, 49– 76 (Berkeley: University
of California Press, 1992).
102
chapter 2
2. Repeated CMV infection or reactivation is occurring resulting in immu-
nosuppression, etc. This “continuous antigenic stimulation” may lead to
an increased synthesis of defective viruses. These defective viruses may
be oncogenic in certain individuals.
3. A heavy total body infection burden is exhausting the individual’s ability
to respond, resulting in immunosuppression, etc.71
While initially task force members explored a number of hypotheses
of causation— in particular, the recreational drug use of nitrite inhalants,
commonly known as “poppers,” by gay men— they became more con-
vinced that an infectious disease was causing the immune suppression
that underlay the Karposi’s sarcoma and opportunistic infections. This
view was underscored by an early analysis of the case control study data
in late December 1981, which indicated that “the number of lifetime
[male] sex partners appears to be an important risk factor.”72 Neverthe-
less, they needed strong evidence to demonstrate this infectious disease
hypothesis, particularly since research published by scientists at the Na-
tional Institutes of Health in mid- February 1982 suggested that other re-
searchers were moving away from a sexually transmitted disease (STD)
etiology and back toward the use of nitrites.73 As Darrow recalled in an
interview:
And so when we suggested to them and other scientists that we think it’s sexu-
ally transmitted,
they said, “That’s because [ in mocking tone] you guys are all
in the Venereal Disease Program, you think that everything is sexually trans-
mitted including sunburn.” You know, so they thought that we were speaking
from a certain point of view or bias, and that we didn’t have any credible evi-
dence along those lines, so we had to be very cautious and careful about mak-
ing recommendations about sexual behaviour.74
71. Curran, “Study Issues and Hypotheses,” p. 3 of attachment.
72. James W. Curran, “Briefi ng, Task Force on Kaposi’s Sarcoma and Opportunistic
Infections,” memo, December 30, 1981, folder: AIDS Task Force: 1981, Darrow Papers.
On the archival copy of the document, male is inserted in handwriting, likely as a correc-
tion by Darrow. This same briefi ng makes note of an initial report of a dermatologist in
Port- au- Prince, Haiti, treating eleven young men with KS, foreshadowing the later appear-
ance of Haitians as one of the “risk groups” for AIDS.
73. James J. Goedert et al., “Amyl Nitrite May Alter T Lymphocytes in Homosexual
Men,” Lancet 319, no. 8269 (1982): 412– 16.
74. Darrow, recording C1491/21, tape 1, side B.
The Cluster Study 103
Although the bulk of the attention on sexual transmission focused on
gay men, heterosexual cases accounted for more than 10 percent of the
cases by January 1982.75 While investigators primarily focused on the in-
jection drug use that was widespread among these cases, several indi-
viduals had traveled substantially and reported a large number of sexual
partners. For example, one early case reported to the CDC was a hetero-
sexual Haitian man under the age of fi fty who had come down with PCP
in early 1981. Beginning in the late 1960s, he had lived for nearly a de-
cade on the East Coast of the United States, returning occasionally for
visits to Haiti, and reported more than forty lifetime female sexual part-
ners. He had also traveled to Europe in the mid- 1970s, and he disclosed
intravenous (IV) heroin use during 1980 and 1981.76 Cases like this in-
dividual, as well as others which doubtlessly escaped the CDC’s retro-
spective surveillance efforts, suggest the implausibility of later attempts
to pin the emergence of AIDS in North America to a single, identifi -
able “Patient Zero.” They also illustrate the point made by the sociol-
ogist Steven Epstein, who suggested the possibility that the infectious
agent spread simultaneously among IV drug users and among men who
had sex with men but was fi rst recognized in the latter group because it
spread more quickly and widely within it and because the fi rst such case
subjects were middle- class men with better access to health care.77
In February 1982, EIS offi cer and task force member Harry Haverkos
wrote a memo emphasizing the need to interview surviving case subjects
from outside New York City, San Francisco, and Los Angeles, to access
further “epidemiologic clues”:
75. “Kaposi’s Sarcoma and Opportunistic Infections in Heterosexuals,” memo, Harold
Jaffe to James Curran, 22 January 1982, folder: AIDS Task Force: 1982, Darrow Papers.
76. “Summary of Interview Data from Heterosexual Cases of Kaposi’s Sarcoma and
Pneumocystis Pneumonia,” attachment to memo from Mary Guinan to James Curran,
4 January 1982, folder: AIDS Task Force: 1982, Darrow Papers.
77. Epstein, Impure Science, 49– 50; Don C. Des Jarlais et al . , “HIV- 1 Infection among Intravenous Drug Users in Manhattan, New York City, from 1977 through 1987,” Journal
of the American Medical Association 261, no. 7 (1989): 1008– 12. James Curran’s comments
at the NCAB meeting in December 1982 reinforce the likelihood of this point: “They’re
not diffi cult to recognize syndromes, they’re 35 years old, prosperous, previously healthy
men who come in looking like they’re going to die, spend the next six or seven months in
hospital, run up a hospital bill of $100,000 to $150,000 and then die. So it’s not something
that’s missed, each case is a grand rounds case in its individual hospital”; “NCAB Meet-
ing,” 17.
104
chapter 2
A theory of a point source in New York City could be strengthened by show-
ing that all cases have some connection with the “Big Apple.” Could it be one
place, i.e., one specifi c bathhouse, in New York City? Contact with New York
City may help us to defi ne the incubation period of these diseases. Leads into
the distinction between drugs and transmissible agents as the cause of the ep-
idemic could be unearthed.78
In an attachment to Haverkos’s memo, the individual identifi ed as Case 57
— one of twenty- three living male case subjects with a residence outside
of metropolitan New York, Los Angeles, and San Francisco— is listed as
a Canadian from Toronto with an early onset of KS in July 1978. Dar-
row, who had until this time been closely involved with the case control
study in the design of the questionnaire and the training of interviewers,
circled this case for follow- up, as well as Case 154, a gay man in his early
fi fties from a European country, whose onset of KS was listed as Janu-
ary 1975.79
On February 25, 1982, Darrow wrote to Polly Thomas, an EIS offi -
cer at the New York Department of Public Health who was responsible
for the city’s investigations into the new illness, requesting further infor-
mation about some of the earliest cases in that city. “I am trying to put
together the pieces of a jigsaw puzzle I found locked away in a cabinet
at CDC,” he wrote, “and I fi nd many of the important pieces missing.”
Darrow believed there to be “a geographic focus to the current outbreak
of Kaposi’s sarcoma before 1980,” a hypothesis he attempted to disprove
by revisiting the data about the earliest recorded cases.80 Shortly there-
after he wrote a memo in which he examined the possibility of “the Hor-
78. Harry W. Haverkos, “Cases Outside New York City, San Francisco, and Los Ange-
les,” memo and attachment, February 8, 1982, p. 1, folder: AIDS Task Force: 1982, Darrow
Papers; transmissible typed as “trsnsmissible” in original.
79. Ibid., p. 1 of attachment. Case 154 was lost to subsequent follow- up when he re-
turned to Europe shortly after his diagnosis with KS in July 1981. Due to this individual’s
early symptom onset, Darrow wrote that “one could assume that this international travel-
ler was a source of all subsequent infections seen in the U.S.”; Darrow, “Time- Space Clus-
tering of KS Cases in the City of New York: Evidence for Horizontal Transmission of Some
Mysterious Microbe,” memo, March 3, 1982, p. 2. The onset date for the individual identi-
fi ed as Case 57 was later determined to be December 1979. In the task force documenta-
tion, investigators often used the terms patient and case interchangeably, and they referred to individuals by both two- digit and three- digit identifi ers (for example, 57 and 057).
80. William Darrow to Pauline A. Thomas, 25 February 1982, pp. 1– 2, folder: KSOI:
Cases and Contacts in New York City: July 12– 16, August 4– 6, 1982, Darrow et al., Dar-
The Cluster Study 105
izontal Transmission of Som
e Mysterious Microbe” in New York City,
Darrow found that “of those experiencing symptoms before 1980, all but
one lived in the metropolitan New York City area and could be linked
to Manhattan in one way or another.” While the possibility could not
be dismissed, “no evidence for direct transmission is available. . . . We
need more data.”81 Darrow suggested that some of the individuals in
these cases needed to be interviewed or, as in the instance of Case 57,
reinterviewed.82
AIDS Project Number 6: The Los Angeles Cluster Study
An unexpected opportunity to gather more data was presented in March
1982 when David Auerbach, an EIS offi cer stationed in Los Angeles,
contacted Atlanta to let the KS/OI Task Force team know that four men
with KS/OI were in the same Los Angeles hospital and had apparently
been one another’s sexual partners. To investigate the possibility that
AIDS patients could be linked sexually, Darrow was dispatched to Los
Angeles, and together he and Auerbach attempted to interview as many
surviving KS/OI case subjects as possible. The Los Angeles cluster83 was
one of two possible clusters that appeared at this time; the other— three
cases of PCP among male prisoners in New York’s Taconic Prison— was
also investigated, though CDC physicians were unable to establish any
direct links in the latter case.84
It was here that Darrow’s training was vitally useful. “I felt confi dent,”
he recalled, “that I could talk to the people who were infected, make
them feel comfortable, not embarrass them, assure them that I would
row Papers. Thomas’s work on AIDS is featured in James Colgrove, Epidemic City: The
Politics of Public Health in New York (New York: Russell Sage Foundation, 2011), 107– 41.
81. William Darrow, “Time- Space Clustering of KS Cases in the City of New York:
Evi dence for Horizontal Transmission of Some Mysterious Microbe,” memo, March 3,
1982, pp. 1, 3, folder: KSOI: Cases and Contacts in New York City, Darrow Papers.
82. Shilts explained in his history that task force member Mary Guinan had conducted
the fi rst interview with the man known as Case 57. See Shilts, Band, 83– 84.
83. The Los Angeles cluster study was also known within CDC as AIDS Project Num-
ber 6: Harold Jaffe, “AIDS Project Codes,” memo, April 9, 1985, p. 2, folder: AIDS Task
Patient Zero and the Making of the AIDS Epidemic Page 18