AIDS doctors: voices from the epidemic Ronald Bayer and Gerald M. Oppenheimer New York: Oxford University Press; 2000 310 pp. US$ 27.50 (cloth) ISBN 0-19-512681-5
Last summer I was speaking with a novelist who lives down my street about my personal and professional experiences as an AIDS doctor. He strongly recommended that I publish, with other AIDS physicians, a record of our experiences or else risk losing a part of medical history. A few days later CMAJ sent me a review copy of AIDS Doctors: Voices from the Epidemic. The idea for this wonderful book had arisen in the early 1990s, during a dinner conversation in which the editors were made privy to the private reminiscences of three AIDS physicians. My novelist neighbour's suggestion came nearly 10 years too late.
AIDS Doctors is an oral history based on the recollections of 76 front-line AIDS physicians in the United States, including those who first detected and reported on the epidemic in June 1981. Canadian “AIDS people” (a designation assigned to the first wave of AIDS physicians in the US) will recognize themselves in this book, no matter what their background or experience.
The editors remark on the atypical demography of the physicians interviewed: 40% gay and lesbian, just under 50% Jewish, 30% women and 90% white. A leftist political philosophy, deeply held religious beliefs, a sense of moral duty and the excitement of a new disease motivated and sustained AIDS physicians through the first terrible 15 years of the epidemic. But it was gay physicians who rallied to the sides of their dying friends and lovers in numbers “out of all proportion” to their representation in the medical profession. Many openly declared their homosexuality, almost in defiance of the deadly epidemic sweeping their community.
AIDS Doctors provides a blow-by-blow account of the bewilderment and shock felt by physicians who first encountered an unknown killer of young gay men. Physicians, some reluctantly, were quickly connected to communities of HIV-infected people with whom they shared no common experience or values: injection drug users, the poor and (for heterosexual physicians) the gay community. It was a struggle — described in brutally frank interviews — to overcome the barriers between mostly middle-class physicians and dying, destitute patients. And it was their helplessness in witnessing the march of their patients to death that impelled most AIDS physicians to return to the most noble traditions of medicine: kindness, compassion and availability. Death and dying also forced these physicians to cede power in relationships that they traditionally dominated. HIV-infected people demanded par-ticipation in all decision-making, whether at the level of patient care or of public policy, leading to a so-called “more democratic” medicine.
The epidemic profoundly affected the lives of AIDS physicians who, as one of them put it, became “gripped.” Fear of infection, occasionally to a near-paranoid degree, tested a centuries-old ethical conflict between the values of self-interest and of self- effacement. Requests for assisted suicide, the demands for unapproved and unconventional therapies and the need to enrol poverty-stricken patients in clinical trials as a means of securing medical care regularly confronted American AIDS physicians. The dumping of AIDS patients by physicians who refused to treat them, institutional antagonism toward AIDS doctors and professional isolation produced clusters and networks of AIDS physicians who relied on each other for mutual support.
The traditional separation between doctors and patients collapsed, particularly in the gay community, in the throes of death. For heterosexual physicians the bonds of family life were severely strained as they poured their energies into all aspects of the epidemic. One highly visible doctor recounted a conversation in which his young child stated, “I don't want to see a TV Daddy; I want to see the real Daddy.”
The intimate revelations published in AIDS Doctors will resonate with many AIDS physicians: the “illicit sense of exhilaration” at engaging with a new disease with its myriad manifestations, “tak[ing] chances and work[ing] on limited data,” the “state of chronic depletion, sadness and fatigue” and the disappointment and exasperation of the zidovudine (AZT) monotherapy saga.
The assimilation of AIDS into mainstream medicine (the “normalization” of AIDS) has been wrought in part by the spectacular success of new treatments and the rise of early AIDS doctors into positions of professional prominence. But the goodwill and commitment of the earlier years is no longer sufficient. The complexity of highly active antiretroviral therapy (HAART) requires expertise held by relatively few. The “ties and identities that so defined the lives of AIDS doctors” have broken down, and the solidarity has dissipated. One AIDS pioneer stated, “I would really prefer being on the frontlines again, doing something that's unique.”
The subjective experience of Canadian AIDS physicians is accurately reflected in AIDS Doctors, with some noteworthy exceptions. Canadian physicians were not participants in the detection and initial description of the AIDS epidemic in North America. Canada's health care system guaranteed, in contrast to the US system, access to HIV care for patients regardless of socioeconomic status. The existence of a well-developed system of primary care meant that Canadian family physicians, particularly gay physicians, found themselves on the front lines of the AIDS epidemic in Canada.
AIDS Doctors provides for both medical and lay readers an intimate glimpse into the dramatic struggles of the relatively few physicians who first confronted an epidemic of catastrophic proportions. It stands as a testament to the lives of physicians “gripped” by the AIDS epidemic.