Randy Shilts, American journalist and author, was born August 8th 1951.
After earning a degree in journalism from the University of Oregon and spending years as a freelancer, Shilts was hired by the San Fransisco Chronicle in 1981, writing primarily about issues in the gay community.
Ironically this was the same year that what would become known as HIV/AIDS first came to the attention of the medical community, beginning with the now-famous MMWR paper “Pneumocystis Pneumonia — Los Angeles.” Reading it in hindsight is chilling:
In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5 patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection. Case reports of these patients follow….
All the above observations suggest the possibility of a cellular-immune dysfunction related to a common exposure that predisposes individuals to opportunistic infections such as pneumocystosis and candidiasis. Although the role of CMV infection in the pathogenesis of pneumocystosis remains unknown, the possibility of P. carinii infection must be carefully considered in a differential diagnosis for previously healthy homosexual males with dyspnea and pneumonia.
If you’re interested in the history of HIV/AIDS you’ve almost certainly read Shilts’ work, which is invaluable in understanding the early years of the crisis: the confusion and fear in the gay community as it becomes clear that strange cases of PCP and Kaposi’s sarcoma are part of something much larger; medical efforts to understand and trace the ailment; and the political struggle to mount an effort against the disease at a time when the gay community’s social and political standing was so precarious.
I can’t think of And the Band Played On without thinking of the so-called “Patient Zero,” Gaetan Dugas, a French-Canadian flight attendant who was portrayed as a sort of Typhoid Mary of AIDS. Dugas was a promiscuous gay man– averaging something like 250 sex partners a year, apparently– who traveled constantly and frequented the bathhouses of many cities in North America and Europe. He was singled out as the international carrier of the virus when epidemiologists tried to trace back common sexual partners from men who were in the first wave of AIDS fatalities. This early epidemiological work was hampered by an erroneously short estimate of the virus’s latency period: doctors were assuming a period of 12-18 months, but later research would show an incubation persion of over seven years. With this long a timeframe, the virus would have spread with or without Dugas.
But Shilts’ portrait is haunting: he depicts Dugas continuing his bathhouse exploits despite the urgings of doctors at the CDC, even flaunting his KS lesions to new conquests:
Back in the bathhouse, when the moaning stopped, the young man rolled over on his back for a cigarette. Gaetan Dugas reached up for the lights, turning up the rheostat slowly so his partner’s eyes would have time to adjust. He then made a point of eyeing the purple lesions on his chest. “Gay cancer,” he said, almost as if he were talking to himself. “Maybe you’ll get it too.”
(Dugas died in March of 1984 from AIDS-related kidney failure.)
The HIV epidemic is of interest in medical ethics for several reasons. I’ll briefly describe one of them here, which is the way HIV helped to reshape thinking about the physician-patient relationship. One aspect of this concerns end-of-life care. As the NYT put it a few years ago,
In the early years of the epidemic, [HIV] rekindled many doctors’ interest in the almost lost art of caring for dying patients. They were untethered from useless, life-proloning machinery and allowed to die quietly. Medical ethicists agree that AIDS was a prime force in introducing living wills, health care proxies, DNRs, and hospice care into common parlance.
HIV prompted rethinking end-of-life care partly because the treatments were no damned good. AZT is toxic. Having a Hickman catheter in your chest is unpleasant. And so on. With such bad outcomes, doctors were encouraged to re-evaluate of the goals of treatment.
More broadly, the epidemic promoted a model of patient autonomy in place of the more traditional “do what the doctor says” view. In the early years of the disease, there wasn’t much to be known about the disease or its treatment. And HIV happened to appear in a community with a lot of educated professionals with the resources to learn all that could be learned about the disease, leading to a rise in medical activism. (Think of ACT-UP and the GMHC, for example.) Doctors robbed of their traditional position of expertise confronted patients with fairly detailed knowledge of their own condition, and this helped to shift decision-making authority.
Shilts was tested for HIV but refused to learn the result of the test until he finished And the Band Played On. “Everyone I know who tested positive turned into an activist,” he explained.
Randy Shilts died in February 1994 after bouts of PCP and Kaposi’s sarcoma. In addition to And the Band Played On, Shilts was the author of The Mayor of Castro Street, about the rise and assassination of Harvey Milk, and Conduct Unbecoming, about gays and lesbians in the military.