Olin College of Engineering
DigitalCommons@Olin
2009 AHS Capstone Projects
AHS Capstone Projects
5-1-2009
AIDS: The Early Years
Clark McPheeters
Franklin W. Olin College of Engineering, [email protected]
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Clark McPheeters
AIDS: The Early Years
April 4, 2009
On the morning of October 2, 1985, Rock Hudson died of acquired immunodeficiency
syndrome (AIDS). By this date, 12,000 were dead or dying of AIDS and hundreds of thousands
were infected with the human immunodeficiency virus (HIV) (Shilts xxi). Five years had passed
since the first gay men began suffering from strange diseases like Pneumocystis carinii, Kaposi’s
sarcoma, and toxoplasmosis (Shilts xxvii). These men died not long after acquiring the rare
diseases—mysterious deaths from “gay cancer,” an untreatable disease that wasted their immune
systems. By 1982, the acronym AIDS had superseded “gay cancer,” and in 1983, the United
States Department of Health and Human Services declared AIDS its “number-one health
priority” (Shilts 171, 324). Still, AIDS had not crossed the threshold to becoming a household
name. Only with the passing of Rock Hudson did AIDS gain a face, an identity. To most
Americans, it was now “the disease that Rock Hudson died of.” Among thousands of puzzling
deaths, it was the death of a celebrity that finally drew the attention of the American public.
In particular, the beginning years of HIV/AIDS were a perilous time in the gay
community. Many were sick and the sick were dying of a horrible, wasting affliction. Three
primary factors led to the explosive bloom of this disease: (1) Gays were recalcitrant in dealing
with the issue, taking orders from no one in their newfound sexual freedom; (2) the news media
had no interest in “homosexual stories;” and (3) the federal government was slow to react and
halfhearted in funding important research that led to the discovery of the HIV virus. I will
analyze in detail these factors that lead to the eruption of AIDS in America through the use of
both statistics and personal accounts of various types, steering clear of a “blame the victim”
approach to dealing with the mistakes of the gay community. In doing so, I hope to shed light on
the factors that exacerbated this growing epidemic and bring greater understanding of the
frustration, suffering, and pain this community went through. By intertwining the objective and
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subjective halves of the HIV/AIDS story, I will argue that understanding the human suffering
AIDS inflicts is just as important as knowing the statistics of the epidemic. Specifically, I intend
to show that this “gay cancer” was swept under the rug for far too long by all parties. It is my
hope that you as the reader will be able to both learn from and sympathize with the struggles of
the gay community during the early years of HIV/AIDS. Let us all be better equipped to
recognize and deal swiftly with the next “disease of the future.”
There is still currently no cure for HIV or AIDS, and the only sure method of preventing
infection is avoiding exposure to the virus. However, highly active antiretroviral therapy
(HAART), or a “drug cocktail” as it is often called, can extend the life expectancy of individuals
infected with HIV to as long as 20 years (Knoll, Lassmann and Temesgen 1219). According to
the Centers for Disease Control and Prevention (CDC), HIV is transmitted through sexual
contact with an infected person, by sharing needles or syringes with an infected person, or
through transfusions of infected blood. Babies born to women with HIV may be infected before
or during birth or through breast-feeding.
Individuals generally progress through five stages
of HIV/AIDS: Infection, Response, Asymptomatic, Symptomatic, and AIDS, according to the
Centers for Disease Control and Prevention. The net median survival time for HIV/AIDS
patients is currently eleven years, while individuals in resource-limited settings who do not
receive treatment may survive only six to nineteen months (UNAIDS and WHO 16) (Zwahlen
and Egger 6). The earliest stage of HIV/AIDS, Infection, occurs before the immune system has
started to respond and commonly lasts around four weeks in otherwise-healthy individuals.
During this stage, the HIV virus begins to infect cells and copy itself, causing the person to feel
flu-like symptoms. The second stage of HIV/AIDS is Response, when the body tries to respond
to the HIV virus by making antibodies against it. This process is also known as seroconversion
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AIDS: The Early Years
3
and marks a one- to two-week transition from HIV-negative to HIV-positive diagnosis based on
antibody tests. The third phase of HIV/AIDS is the Asymptomatic phase. Although individuals
in this phase of the disease do not notice they have HIV, the infection is still causing damage to
the immune system. This stage may last for eight to ten years in people who are otherwise
healthy. In the final phase before AIDS, the Symptomatic phase, secondary infections begin to
take hold. Finally, full-blown AIDS sets in with more severe secondary infections leading
eventually to death. A list of common infections in the Symptomatic and AIDS stages of the
disease is extensive: Pneumocystis carinii pneumonia, Mycobacterium avium complex,
cytomegalovirus, candidiasis, cryptococcal meningitis, Kaposi’s sarcoma, non-Hodgkin’s
lymphoma, tuberculosis, toxoplasmosis, cryptosporidiosis, hepatitis C, salmonellosis, herpes
simplex virus, and human papilloma virus (Centers for Disease Control and Prevention) (Mayo
Clinic Staff). However, in the early days of HIV/AIDS, none of this information was yet known.
Gay men were coming down with strange diseases and no one knew why—Pneumocystis carinii
is a bacterium that only strikes individuals with depressed immune systems and infected fewer
than 100 patients a year in the United States prior to the 1980s (Bennett, Rose and McLean).
Kaposi’s sarcoma is a benign cancer that had only stricken 500 to 800 Mediterranean and Jewish
men who were in their 50s and 60s, and toxoplasmosis is a parasite carried by cats that can cause
encephalitis in immunosuppressed patients (Shilts 37). Worse yet, instead of responding well to
treatment for these diseases, the men only became weaker and more wasted.
The helplessness of doctors in treating this disease did not go unnoticed by the patients
they treated—Paul Monette, in particular, writes eloquently and angrily about his experience
even as late as 1987 in one of his poems, “Current Status 1/22/87” (phrasing added):
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four hundred milligrams ribavirin b.i.d / the magic dose if results released 1/9 prove to be
long-term / of course when you cry all day an afternoon can be frightfully long-term / but
we musn’t mess the curve with personal agendas / equal dose acyclovir / ditto twice a day
/ this part purest guesswork / doesn’t attack HIV but seems to lower the general viral
bullshit level and besides the cornflower-blue capsules go quite nicely with the royal-andwhite of the ribavirin rather like the flag of an island nation which I am
Monette’s words of a “magic dose,” “general viral bullshit level,” and capsules of colors which
go quite nicely together speak of his (and surely others’) frustration with the pure guesswork of
HIV treatments even as late as 1987. Elsewhere, he also uses the words “abacus,” “oracle,”
“shamans,” and “leeches,” further highlighting the primitive nature of his HIV treatments.
Finally, his feelings of being an “island nation” and crying all day certainly speak to his
frustration with the disease that no one seems to be able to touch. Thousands of other patients
must have been feeling the same frustrations as Paul Monette. But how did this disease spread to
thousands of patients?
It is hardly surprising that the spread of HIV was rampant during the early years of the
epidemic. In the gay community, promiscuous sex in bathhouses was a primary factor in
transmission of the disease and other sexually transmitted diseases (STDs). “Serial offenders”
with repeated STD infections were often found in waiting lines at clinics. Shilts notes in his
book the experience of a physician named Dan William:
[…] he had his “regulars” who came in with infection after infection, waiting for the
magic bullet that could put them back in the sack again. William began to feel like a
parent as he admonished the boys: “I have to tell you that you’re being very unhealthy.”
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Promiscuity, however, was central to the raucous gay movement of the 1970s, and his
advice was, as the Texans so charmingly put it, like pissing in the wind. (Shilts 19)
The gay men William saw in his clinic largely ignored his warnings, proceeding still to the
bathhouses.
Shilts notes that studies from the time demonstrated that “people who went to bathhouses
were simply more likely to be infected with a disease—and infect others—than a typical
homosexual on the street” (19). For example, a Seattle study of shigellosis, a bacterium which
causes diarrhea, showed that 69 percent of infected patients found their sexual partners in
bathhouses (19). Around the same time, a Denver study discovered that an average bathhousegoer having a typical 2.7 sexual contacts a night risked at least a 33 percent chance of contracting
syphilis or gonorrhea due to the fact that one in eight men in the bathhouses had an
asymptomatic case of these diseases (19). Oral-anal intercourse, or rimming, as it is popularly
called, was particularly important in the spread of amebiasis and giardiasis, both intestinal
parasites. Contact with these parasites from fecal matter was likely through anal intercourse, and
direct ingestion of them was a virtual certainty through rimming. The New York Gay Men’s
Health Project revealed that 30 percent of patients had gastrointestinal parasites, and in San
Francisco, “Gay Bowel Syndrome,” as medical journals called it, increased by 8,000 percent
after 1973 (19). Bathhouse behaviors were resulting in conditions ripe for an epidemic, and
AIDS fit the bill nicely.
Even when the San Francisco Department of Public Health forced bathhouse owners to
post signs warning patrons about the risk of contracting AIDS, the signs were often posted in
dark corners where they were difficult or impossible to read (Shilts 314-318). It is doubtful that
gays would have taken much heed anyway, based on the response garnered by initial attempts to
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raise funds and awareness for “gay cancer,” which were met with outright hostility (Shilts 91).
The misnomer “gay cancer” fostered the misconception that AIDS was not contagious, and is
likely to have contributed to the spread of HIV. Another significant contributor to apathy about
AIDS was the physical fitness most gay men exuded, “crowding Nautilus centers and weight
rooms” (Shilts 20). How could one be unhealthy and still look so good?
Perhaps one of the most attractive gay men in his time was Gaetan Dugas, a Canadian
flight attendant. It was thought by Shilts and others that he was Patient Zero, the first human to
contract the HIV virus. Current thought, however, is that Patient Zero was a man living in what
is now the Democratic Republic of Congo in 1959 (Zhu 594). However, it is still a certainty that
the cross-country sexual encounters that Gaetan Dugas and other men like him engaged in helped
AIDS take a strong foothold in the gay community and eventually the world, while governments
stood by idly.
The federal government was first alerted to this mysterious, growing epidemic on April
28, 1981, by a CDC worker named Sandra Ford (Shilts 54, 63, 66). She regularly filled eighty to
ninety orders per year for a drug named Pentamidine, one of a few drugs the federal government
stockpiled through a special arrangement with the Food and Drug Administration (FDA) (Shilts
54, 63). These drugs were not officially licensed for clinical use and not enough potential profit
existed for commercial drug companies to make them, so when doctors needed Pentamidine,
they called Sandy Ford at the CDC. Doctors routinely requested the drug for patients who had
contracted Pneumocystis carinii pneumonia (PCP) as a result of immune depression, but after
filling nine orders in three months for patients with unexplained immune suppression, Ford was
worried. Too many unexplained cases of PCP infection on her annual report to the FDA would
Clark McPheeters
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raise questions. Sandy wrote a memo to her boss, the deputy director of parasitic diseases, and
the federal government was alerted to the new epidemic.
When the federal government finally became involved in the AIDS crisis in 1981, it was
with tied hands. The CDC tried to conduct an investigation on PCP cases in New York City, but
doctors would not breathe a word about it. Apparently, they were publishing a paper in a
prestigious journal and did not want to lose their shot at publication credit (Shilts 67). Around
the same time, doctors in California were preparing a report on PCP in Los Angeles for the
Morbidity and Mortality Weekly Report (MMWR).
When the report on Pneumocystis was published in the MMWR on June 5, 1981, any
reference to homosexuality was omitted from the title, and the headline read “Pneumocystis
pneumonia—Los Angeles”. The original submitted title had read “Pneumocystis pneumonia in
homosexual men—Los Angeles (Shilts 68-69). This simple change by a CDC staff member
undid the association between gay men and Pneumocystis that was so important to the authors of
the report. As Shilts eloquently states, the motto of the federal government in dealing with the
crisis was simple and based in good intentions:
Don’t offend the gays and don’t inflame the homophobes. These were the twin horns on
which the handling of this epidemic would be torn from the first day […]. Inspired by
best intentions, such arguments paved the road toward the destination good intentions
inevitably lead (Shilts 69).
It is impossible to gauge how a report title which closely associated the disease with gays would
have been received, but it is likely that the pieces of the puzzle would have been put together
sooner. If physicians in other regions of the U.S. reading the MMWR had been able to easily
draw an association between their gay patients with Pneumocystis and the gay patients in Los
Clark McPheeters
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Angeles also stricken with the disease, the struggle to identify AIDS would certainly have been
expedited.
Even by September of 1982, AIDS was still virtually ignored by the federal government
(Shilts 186). A Congressional Research Service report found that in 1982, the National Institutes
of Health (NIH) research spending amounted to $36,100 per toxic shock syndrome death, even
though the mystery of the disease had already been solved. Similarly, NIH spending on
Legionnaire’s disease research in fiscal year 1982 totaled $34,841 per death, yet research
spending in AIDS amounted to about $8,991 per death in fiscal year 1982 (Shilts 186). Perhaps
most startling, however, was the reaction of the National Heart, Lung, and Blood Institute. Even
after the discovery of HIV-contaminated Factor VIII blood product, the institute budgeted only
$250,000 for HIV/AIDS in the next year (Shilts 186). No wonder Paul Monette penned in his
poem “Manifesto” these words: “we need the living alive to bucket Ronnie’s House with
abattoirs of blood / hand in hand lesions across America need to trainwreck the whole show till
someone listens” (phrasing added) (Monette 40). While the eventual discoverers of the HIV
virus in 1983 have stated, “the conceptual and technical tools [needed to discover HIV] arrived
in our hands just before the first patients with AIDS were identified in 1981,” the funding for this
important research simply did not exist (Gallo and Montagnier 2283). Was Congress ignoring
pleas for help, or were there just too few to be heard?
It is unlikely that the number of cases of HIV infection and subsequent secondary
infections was simply too small for the federal government to have taken note. Shilts notes that
between June and November of 1981, 788 AIDS cases in thirty-three states were reported (200).
In the comparatively large time frame of July 1965 to October 1978, 670 cases of Legionnaire’s
disease were documented in the United States (William H. Forge 616). Still, Legionnaire’s
Clark McPheeters
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disease received far more funding in 1982 than AIDS. This disparity cannot be blamed on a lack
of AIDS cases—there were more cases of AIDS reported in half of 1982 than Legionnaire’s
cases reported in the thirteen years between 1965 and 1978. Another factor must have been
responsible.
The unfortunate difference between AIDS and toxic shock syndrome or Legionnaire’s
disease also lies heavily in media coverage (Shilts 110). Once toxic shock syndrome became
front-page material, the hunt was on and within months of the first MMWR report, the connection
between tampons and the syndrome had been discovered. When American Legionnaires were
stricken in 1976, pictures of flag-draped coffins carrying dead veterans filled newspapers. In
contrast, The New York Times had printed only two stories on the AIDS epidemic by December
of 1981, while Time and Newsweek finally ran their first major stories during the same month.
Editors were trashing articles, according to reporters, because they did not want stories about
gays and their distasteful sexual habits tarnishing their newspapers (Shilts 110).
The AIDS crisis was swept under the rug by different groups for different reasons, and
the result was synergistic. As Shilts puts it:
In those early years, the federal government viewed AIDS as a budget problem, local
public health officials saw it as a political problem, gay leaders considered AIDS a public
relations problem, and the new media regarded it as a homosexual problem that wouldn’t
interest anybody else. Consequently, few confronted AIDS for what it was, a profoundly
threatening medical crisis. (xxiii)
Why should we be so surprised at the pandemic AIDS has turned into? Most gays were not
talking about AIDS and even when some did, the media was not writing about it. Because the
media was not writing about AIDS, the general public, including senators and representatives,
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did not know about it. Furthermore, they would not spend money on AIDS research even when
they did hear about it. It was in almost everyone’s best interest to keep the epidemic under
wraps, or so it seemed. It was the silence of gays, the government, and the media that has
allowed AIDS to spread far beyond the gay community it first afflicted. As Paul Monette
predicted, “soon the thing will ravish their women / their jock sons lie in rows in the empty
infield / the scream in the streets will rise to a siren din” (Monette 42). As of December 2007, 33
million people were living with HIV. During the year 2007, 2.7 million people were newly
infected, and 2 million people died of AIDS (World Health Organization 1). The AIDS crisis
has reached a “siren din.”
Twenty-eight years after the first report of Pneumocystis in what were later discovered to
be individuals ravaged by AIDS, the April 10, 2009 MMWR features two articles on AIDS:
“HIV-Associated Behaviors Among Injecting-Drug Users—23 Cities, United States” and
“Guidelines for Prevention and Treatment of Opportunistic Infections in HIV-Infected Adults
and Adolescents.” The second article is an impressive 216 pages in length, detailing specific
disease treatments for seemingly every opportunistic infection an AIDS patient could ever
contract. It is amazing how far we have advanced in the treatment of this disease and the
secondary infections it causes, based on the mountain of information that the MMWR has
presented. However, one could also be discouraged that these articles are still necessary. After
28 years, we still have not developed a vaccine or other method to eradicate or at least control
the spread of this virus along with diseases such as smallpox, polio, measles, mumps, and
rubella. One can only wonder what our world health situation would look like today if this
disease had been stopped in its tracks many years ago.
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