AIDS Doctors: Voices from the Epidemic: An Oral History - Softcover

In New York, San Francisco, and Miami, physicians initially noted that their patients were exclusively men who had sex with men, injection-drug users, and hemophiliacs. Soon, sex partners of these patients began to show up with similar diseases. Pediatricians quickly noticed a similar constellation of immunosuppression, unusual infections, and odd tumors among the very young. Often, patients died within a year. The AIDS epidemic had begun.

Despite the sharp rise in the number of deaths due to this initially mysterious illness, most physicians were hesitant to provide medical care for patients with AIDS. More astounding were those who refused outright. Many clinicians had intensely negative reactions to the sexual practices and lifestyles of these patients, and this frequently interfered with the provision of appropriate care. Indeed, during the early years, it often appeared that, with disdain and disbelief, the health care system had turned its back on the epidemic.

However, not all physicians walked away. AIDS Doctors: Voices from the Epidemic tells the moving story of doctors who have committed their professional and often their personal lives to the AIDS epidemic. The authors interviewed 76 physicians with broad experience in the field of AIDS to compile an "oral history archive" that describes the shared and unique stories of physicians who have cared for people with AIDS. In essence, the interviews and accompanying commentary weave a history of the AIDS epidemic narrated by physicians who have been immersed in it.

The book begins in 1980, with an account of the mounting anxiety shared by doctors in several U.S. cities who had begun to notice similar clinical presentations among their patients. Personal accounts of the rising number of patients with severe fungal, protozoal, and viral infections provide a sober description of the start of the epidemic. As the story of the epidemic progresses through each chapter, the doctors consider many factors as they commit themselves to working with patients with AIDS. Some chose this path because they were excited about a new disease and the prospect of publication and advancement. Gay and lesbian doctors often found themselves caring for these patients when no one else would. Still others were drawn in by their sense of social justice and a calling to care for the disenfranchised. Chapter by chapter, the many physicians who neglected to care are contrasted with the few who stepped forward. There are detailed descriptions of the struggle to provide adequate services with few resources. Personal accounts reveal that many institutions deliberately chose not to put resources into AIDS care. Often, caring for patients with AIDS involved an uphill battle against hospital administrators, colleagues, friends, and family.

In a chapter entitled "The Dark Years," physicians describe how they came to terms with the little they had to offer young patients who were dying in exceptionally high numbers. A long chapter, "Travel Agents for Death," painstakingly gives voice to doctors who were overwhelmed by the deaths of their patients and had to cope with the ambivalence of their colleagues, the health care system, and society.

The authors then turn to the early treatment era, when zidovudine first became available. During this period, excitement often alternated with fear and horror; feelings of helplessness alternated with feelings of purpose. The book ends with a short chapter about the recent era of highly active antiretroviral therapy. Considering how much space the authors devote to the dark years, more about the recent, optimistic years would have been desirable.

The struggle of these doctors to care for the sick and dying often meant professional and personal isolation. As a physician devoted to AIDS care for many years, I found parts of my own story in the stories of others. All these stories about isolation, battles with administrators, the lack of time with family, and desperation born of the numbers of dead and dying patients need to be heard. Physicians with years of experience in caring for patients with the human immunodeficiency virus will particularly identify with this book; those new to the field should find it inspiring and informative. The book should also enjoy a general readership, since the lay public can relate to the human stories that detail the failings and triumphs of the health care system in relation to AIDS. The book is more than informative and moving -- it is a testament to the devotion of physicians to the sick.

Marla Gold, M.D.
Copyright © 2001 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.