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AIDS Doctors: Voices From the Epidemic, An Oral History
By Ronald Bayer and Gerald M. Oppenheimer
Oxford University Press
310 pp $27.50

I often wondered what compelled my father to read books about war. What could the former Marine, who served a mere four years on the sidelines of the Korean conflict, possibly find engrossing in these details of wars, especially battles that happened so long ago? Those tomes seemed to me to be little more than long, dry passages broken by the occasional gory, first-hand accounts of battles won and lost. What was the point?

After reading AIDS Doctors: Voices From the Epidemic, I can better understand his interest. Like my father, I too had been tangentially involved in a war -- this one a battle of man versus microbe.

I won't forget meeting Daniel in San Diego in 1982. He was curled into a fetal position, his back against a wall, in a storefront rented by a fledgling support group in the days before the mysterious disease was called AIDS. Daniel was a pariah. He had been booted from the US Navy, evicted from his apartment, rejected by his family and friends. The disease had whittled him to flaccid skin on bones. He had purple bruises on his ankles and cancerous lesions lining his throat and mouth, making it difficult for him to eat or drink. His doctor had no more treatments to offer to arrest the pneumonia, the explosive diarrhea, the cancer. Daniel raised his bony shoulders in a fatalistic sign of resignation and rested his head on his knees.

I reached out and touched him gently on the leg. Daniel looked up and smiled. I didn't know then that within a week he would be dead. Or that my act of reaching out to a dying man would put me at odds with my family, who thought it unconscionable that I had put them and myself at great risk. "How could you do something so stupid? No one knows for sure how it's spread," a close relative yelled at me. "Now you've put us all in danger."

A few years after that meeting, I became a community educator on AIDS and a "buddy" to people in the final stages of the disease.

The AIDS saga has come a long way since the early 1980s, when ignorance about the illness reigned and doctors could offer little treatment and no hope to patients. It's easy to forget the days when an AIDS diagnosis marked one for a quick and tragic death, the days when people smuggled potent drugs from Mexico in the desperate hope that those untested pharmaceuticals might prolong or even save their lives. Those were days when people were so fearful that they wouldn't use public toilets or eat at restaurants where gays served their food.

AIDS Doctors bears witness to that grim time -- and to the more hopeful present. Authors Ronald Bayer, professor of public health at Columbia University, and Gerald M. Oppenheimer, a public health professor at Brooklyn College, have both written extensively about the AIDS epidemic since the 1980s. They decided to collaborate on a book about the epidemic after hearing a couple of AIDS doctors exchange personal accounts at a Centers for Disease Control meeting in Atlanta in the early 1990s. Their project was to focus on the epidemic's effect on doctors' lives, capturing their fears, hopes, and frustrations. Ultimately, they created an oral history archive of doctors and AIDS.

Like war veterans, the 76 physicians interviewed have their own stories to tell. These doctors span the spectrum in the AIDS fight, including researchers, directors of AIDS programs, and doctors treating patients in their offices. About one-third of the physicians interviewed are women, and 40 percent are gay. At least two physicians, Stosh Ostrow and Jerry Cade, who served on the President's Advisory Committee on AIDS, were diagnosed with the disease and, according to the book, were still living in 1999. Also interviewed were doctors who were prominent figures in the early days as well as later in the epidemic, including Marcus Conant, Abigail Zuger, and the coauthors of the Morbidity and Mortality Weekly Report that described the first AIDS cases, Michael Gottlieb and Joel Weisman.

With its first-hand narratives, this book stands alone among works on the AIDS crisis. Although a few AIDS doctors have written biographies, most have focused on their patients. Journalist Randy Shilts's epic account of the epidemic's early history, And the Band Played On, chronicled some of these same events. As in 1987 when Shilts wrote his book, many physicians interviewed for AIDS Doctors were critical of the government and scientific community's initial failure to act against the disease.

The accounts in AIDS Doctors are candid recollections of their experiences in the early days of the epidemic, including the physicians' reasons, sometimes selfish, for taking up the fight. For some, it was a challenge, a boost to their careers, an opportunity to be at the forefront of research into one of modern medicine's most perplexing diseases.

Some of the doctors, the book notes, experienced an almost illicit sense of exhilaration when they encountered the new disease. Paul Volberding, who at age 31 had just been appointed head of oncology at San Francisco General Hospital and would ultimately become a central figure in the fight against the epidemic, described it as being both thrilling and horrifying.

"It'll take me for the rest of my life; the energy from those first years will carry me as long as I live, I think. It was an absolutely remarkable period, where every time I'd see a patient there'd be a new disease. It was like it must have felt to be an explorer and to discover America. There really is a sense of breathless excitement."

A number of doctors who took up the fight early on had the same sexual orientation as their homosexual patients. Because of their own sense of duty as physicians, many heterosexual doctors would also become involved on behalf of their patients, despite the stigma associated with disease. Those doctors deserve recognition for all that they accomplished in defining AIDS and bringing the disease into a more manageable state. But most important, they deserve praise for treating their patients with care and respect.

There are the darker stories as well. Bayer and Oppenheimer's book chronicles the way the medical community got caught short and the fact that government and hospital administrators failed to respond -- or reacted too slowly -- when the first cases poured in.

Many doctors turned their backs or closed their doors, rejecting patients because of the disease or, later, because of the low rate of reimbursement and lack of coverage by government-subsidized health insurance programs. When AIDS became manageable and began being treated like any other fatal disease, other physicians turned away or moved on to something else. It had lost some of its luster.

Some of the doctors interviewed in this book would recall longingly those early days of camaraderie and solidarity in the fight against an unknown enemy. Now that the enemy had been revealed, and contained, it was no longer war.

"I have a poster of Che Guevara up on the wall in my office here," recounts Peter Selwyn, a family practitioner who served as associate director of the AIDS program at Yale-New Haven Hospital. "Maybe what I'm for is some perpetual revolution or some sort of new place to go. And in fact I've found myself thinking sometimes, 'What other hopeless, life-threatening disease can I focus my attention on now?' Because now it seems like AIDS is just becoming commonplace and treatable."

AIDS Doctors is no easy read, no book for bedtime. It is dense, both in content and in subject matter. Nevertheless, these accounts, like those of war, are something we should never forget. There will be more vicious diseases that will catch us off guard.

-- Paula Kriner, M.P.H., has a master's degree in public health and has written for Medical Economics and California Lawyer, among other publications. As a consultant for California's Department of Health Services and the Centers for Disease Control and Prevention, she has also written clinicians' training materials on breast cancer screening and follow-up.

First published October 20, 2000
Last updated March 6, 2008
Copyright © 2000 Consumer Health Interactive

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