AIDS Doctors: Voices from the Epidemic: An Oral History / Edition 1

by Ronald Bayer, Gerald M. Oppenheimer

Overview

Today, AIDS has been indelibly etched in our consciousness. Yet it was less than twenty years ago that doctors confronted a sudden avalanche of strange, inexplicable, seemingly untreatable conditions that signaled the arrival of a devastating new disease. Bewildered, unprepared, and pushed to the limit of their diagnostic abilities, a select group of courageous physicians nevertheless persevered. This unique collective memoir tells their story.
Based on interviews with nearly eighty doctors whose lives and careers have centered on the AIDS epidemic from the early 1980s to the present, this candid, emotionally textured account details the palpable anxiety in the medical profession as it experienced a rapid succession of cases for which there was no clinical history. The physicians interviewed chronicle the roller coaster experiences of hope and despair, as they applied newly developed, often unsuccessful therapies. Yet these physicians who chose to embrace the challenge confronted more than just the sense of therapeutic helplessness in dealing with a disease they could not conquer. They also faced the tough choices inherent in treating a controversial, sexually and intravenously transmitted illness as many colleagues simply walked away. Many describe being gripped by a sense of mission: by the moral imperative to treat the disempowered and despised. Nearly all describe a common purpose, an esprit de corps that bound them together in a terrible yet exhilarating war against an invisible enemy.
This extraordinary oral history forms a landmark effort in the understanding of the AIDS crisis. Carefully collected and eloquently told, the doctors' narratives reveal the tenacity and unquenchable optimism that has paved the way for taming a 20th-century plague.

Product Details

ISBN-13:	9780195152395
Publisher:	Oxford University Press
Publication date:	05/16/2002
Edition description:	New Edition
Pages:	320
Product dimensions:	6.00(w) x 8.90(h) x 0.80(d)
Lexile:	1140L (what's this?)

About the Author

Ronald Bayer teaches at the Joseph L. Mailman School of Public Health at Columbia University. Gerald Oppenheimer teaches at Brooklyn College, City University of New York.

Read an Excerpt

Chapter 1: Discovery And Commitment

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 .... Pneumocystis pneumonia in the United States is almost exclusively limited to severely immunosuppressed patients. The occurrence of Pneumocystis in these 5 previously healthy individuals without a clinically apparent underlying immunodeficiency is unusual. The fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population.

Morbidity and Mortality Weekly Report, June S, 1981

First Cases

Epidemics do not announce themselves but enter on cat's paws. The first cases came before the official start of the AIDS epidemic in June 1981, before the new disease had a name. They came in the form of strange, inexplicable, and untreatable conditions in young men, women, and children. These initial encounters, in the late 1970s, left physicians perplexed, sometimes disturbed. Only gradually, as they told their colleagues about what they had seen and began to hear about other cases, did the realization begin to take hold that something unusual and worrisome was occurring.

Donna Mildvan, chief of infectious Disease at Beth Israel Hospital on Manhattan's Lower East Side, had been studying sexually transmitted intestinal infections in gay men since the mid-1970s. Her initial interest in the subject was piqued by an unusual, puzzling case of protozoal infection, "unheard of" in a patient with no travel history. She and her colleague Dan William, a gay physician working on sexually transmitted diseases at New York City's Department of Health, assembled a cohort of sexually active gay men to study enteric diseases. In the late 1970s, Mildvan noticed lymphadenopathy or swollen lymph glands in a number of them. Neither she nor other doctors she consulted could make a diagnosis. Lymph node biopsies came back negative. Here was another medical mystery, one that Mildvan set aside for want of sufficient data. In 1980, an event occurred that only heightened her perplexity.

In June of 1980 a German patient was admitted to Beth Israel. He'd been a chef in Haiti for three years. Of course, nobody at the time understood the significance of that, least of all myself. He came in with bloody diarrhea and a low white blood count. Then he was in and out of the hospital with the stormiest, most chronic, most perplexing course that one can imagine. We treated him with steroids, and both the bloody diarrhea and white count responded. We thought he had Crohn's disease or maybe ulcerative colitis. But then all his symptoms recurred in three weeks, and he developed salmonella. Now we thought he had gay bowel syndrome. Every week he had a new diagnosis, because every week he was back in the hospital with something new. I had exhausted all the diagnoses on my list. So it meant that my list was too short, and I had to spend more time in the library. I spent his entire course in the library.

Then he developed encephalitis, an extremely rare complication. He started to become cognitively impaired and began losing vision in one eye. Routine cultures were negative. Finally, a colleague, Dr. Usha Mathur, suggested we culture his eye fluid for viruses. This was unheard of in those days. So we got the ophthalmologists to biopsy the patient's vitreous and sent the specimen to Dr. Ilya Spigland's virology laboratory at Montefiore. Six weeks later, to and behold, it grew out cytomegalovirus. What on earth was this? Back to the library! There may have been two reports in severely immunocompromised patients of cytomegalovirus retinitis, but they had all grown at autopsy. This was the first case where the virus grew from the eye during life. We were totally bewildered. Why should he have this? What do you do for it? There was no treatment. We tried a few drugs, but nothing changed. He died in December. I can't even begin to tell you what an awful experience it was. You don't lose a 33-year-old patient. We agonized over it. Agonized over it all the time.

Two weeks later, a nurse was admitted to Beth Israel with an aggressive case of Pneumocystis carinii pneumonia (PCP), a condition known to be associated with a compromised immune system. He died soon after; an autopsy showed that he was infected with cytomegalovirus.

After the second case, there was no question in anybody's mind. This was a new disease. It was in gay men. This was the fatal form of it. We had just seen two people die. The lymphadenopathy was the early stage of it. Just like that, it all came together in a flash.

In January 1981, Mildvan met with Dan William to share her suspicions. He responded by informing her of devastating news:

"Donna, you're not going to believe what I have to tell you. Three patients of mine have Kaposi's sarcoma. Gay men. For no reason." And that, too, is a disease of immunocompromise. All the color drained from his face, and we were both speechless. We really saw the whole thing written out before us. We couldn't have dreamt that it would be of these proportions. But we knew we were scared. We were really scared.

In the same month, Dr. Alvin Friedman-Kien, already a wellestablished dermatologist and virologist at New York University's Medical Center, examined a gay man whose diagnosis had eluded physicians at another local hospital. The results of the patient's laboratory tests were entirely contrary to Friedman-Kien's experience and expectations.

He had enlarged lymph nodes, he had fever, weight loss, large spleen; and incidentally he had some brownish purple spots on his lower extremities which were ignored by all the physicians who were taking care of him. They removed his spleen, did lymph node biopsies and liver biopsies with no finalized diagnosis. And he was discharged; but he said to me, when he finally came to see me, "nobody would look at my feet, at this rash on my feet." They were faint, they were purple-lavender, they looked like bruises...

Table of Contents

Acknowledgments	ix
Introduction: Looking Backward	3
1 Discovery and Commitment	11
2 The Dark Years: Fear, Impotence, and Rejection	63
3 Therapeutic Strivings, Therapeutic Stumbles	119
4 Travel Agents for Death	171
5 The Waning of the Epidemic?	221
2000: An Epilogue	265
Appendix 1 Making an Oral History: A Methodological Note	275
Appendix 2 Biographical Notes on Physicians Inverviewed	279
Notes	295
Glossary of Medical Terms	299
Index of Physicians Interviewed	305
Subject Index	307

Editorial Reviews

"A detailed oral history of the first decades of the AIDS epidemic, told from the vantage point of the treating physician...A cold and revealing history of an American archetype, sure to appeal to readers whose lives have been affected by AIDS."—Kirkus Reviews

"It deserves to sit on the bookshelf alongside the earlier classics of the epidemic."—The New York Times Book Review

"AIDS, the most dreaded plague of our epoch, has found its heroes. In this stunning document, doctors, unsung and uncelebrated, are meeting this challenge. Bayer and Oppenheimer, two masterful interviewers, have sounded, in the words of these heroes, a note of hope and possible triumph."—Studs Turkel

"AIDS Doctors is a captivating story that reads like a medical thriller. To hear the story from the point of view of those on the front line and to witness their anxieties and their transformation is truly unique. This book will not only be an important chronicle of the history of AIDS in this country, it will hopefully serve as inspiration for young people contemplating a career in medicine."—Abraham Verghese, author of My Own Country and The Tennis Partner

"In the great tradition of Studs Terkel, Bayer and Oppenheimer offer us the opportunity to hear the determined voices of clinicians who stepped forward to care for those stricken with AIDS in the terrifying early years of the epidemic. The eloquence of these men and women, their courage and compassion, is a powerful reminder that in the midst of tragedy we sometimes find our humanity. This extraordinary book will constitute a critical document and guide as we construct a history of this ongoing and devastating epidemic."—Allan Brandt, Harvard University, author of No Magic Bullet: A Social History of Venereal Disease in the United States since 1880

From the Publisher

Longtime collaborators Bayer (of Columbia University's School of Public Health) and Oppenheimer (of Brooklyn College) team up again to deliver a solid, largely anecdotal account of the AIDS epidemic through the eyes of the doctors who have witnessed it. Organized into a chronological narrative, this collective oral history--based on interviews with 75 gay and straight physicians--surveys the central medical and social issues of each era of the epidemic. From the early 1980s, when gay males with suppressed immune systems suddenly began dying of Pneumocystis carinii pneumonia, to the more recent years marked by treatment breakthroughs, Bayer and Oppenheimer (who together coedited Confronting Drug Policy: Illicit Drugs in a Free Society) showcase the physicians' words. Interviewees describe how frustrated they were initially at not being able to help their relatively young patients, and how anxious they were before they knew how the disease was transmitted, about their own safety and the safety of the gay community. As the book moves on to consider the years during which the epidemic widened to include drug users, some of the doctor-participants candidly admit that they did not feel the same degree of concern for that population. Interviewees then recall extraordinarily committed medical colleagues who tried to give patients emotional comfort as a palliative treatment and the networks they eventually created to support one another. Through the physician's experiences, Bayer and Oppenheimer trace the emergence of drug therapies and attendant controversies, as well as the treatment "partnerships" doctors eventually began creating with patients who demanded the newest drugs, whether or not they were legal or proven effective. Filled with stories, this account will be of interest to medical historians, physicians and AIDS activists. (July) Copyright 2000 Cahners Business Information.|

Publishers Weekly - Publisher's Weekly

This emotionally charged oral history looks at the collective memories of 75 doctors who have been active in the treatment of AIDS patients since the earliest years of the epidemic and illustrates how the disease has affected their lives and careers. Although Bayer (Blood Feuds: AIDS, Blood, and the Politics of Medical Disaster) and Oppenheimer (Confronting Drug Policy: Illicit Drugs in a Free Society) purposely sought out doctors with diverse backgrounds and beliefs, the recollections are often strikingly similar. The book begins with an in-depth description of the early years of confusion, frustration, fear, and rejection and then proceeds to a discussion of the coping strategies that the doctors developed as they constantly confronted death. The latter part of the book provides opinions on clinical drug trials and the pros and cons of current treatments. A glossary of AIDS-related medical terms and brief biographies of the physicians are included. While Abraham Verghese's My Own Country (LJ 4/1/99) and Peter Selwyn's Surviving the Fall (LJ 3/1/98) offer one doctor's perspective, this book is impressive because it ranges widely over the experiences of so many physicians. Often brutally honest and always riveting, it is highly recommended for all libraries.--Tina Neville, Univ. of South Florida Lib., St. Petersburg Copyright 2000 Cahners Business Information.\

Library Journal

AIDS Doctors walks us through the American epidemic with grace, drama and a mastery of the social history of a profoundly important event. It deserves to sit on the bookshelf alongside the earlier classics of the epidemic, Randy Shilts's And the Band Played On, Abraham Verghese's My Own Country and Abigail Zuger's Strong Shadows.
—The New York Times Book Review

Fitzhugh Mullan

A detailed oral history of the first decades of the AIDS epidemic, told from the vantage point of the treating physician. Meticulous interviews with 74 doctors form the core of this lengthy narrative. Beginning with the events of the late '70s and early '80s, the doctors in these pages describe the sudden advent of the mysterious disease that presented itself, in various urban centers, as an immunologic deficit coupled with rampaging, exotic infections. Many physicians' professional lives paralleled the emergence of AIDS medicine in the US: as recently minted residents when the first cases of AIDS appeared, many perceived AIDS both as a clinical opportunity (allowing them to engage in groundbreaking scientific research) and a professional coup (gaining them early entrée into the lime-lit medical demimonde of cutting-edge medicine). Startlingly candid, more than a few physicians here express their passion for cowboy medicine—as well as their pride in publishing journal articles, receiving coveted speakers' invitations, and achieving the crowns of professional stature (such as tenured professorships and government appointments, historically reserved for more senior physicians). The intellectual and emotional conflicts raised by the nearly constant stream of AIDS deaths (until the advent of antiretroviral "cocktails" in the last half of the 1990s) devastated and sobered a generation of physicians taught that treatment leads to cure. Technical gaffes in the storytelling (such as describing the death of an AIDS physician, yet quoting her extensively in subsequent chapters) may confuse and distract the reader, but the eloquence and candor of many ofthedoctors quoted outweigh a certain lack of editorial finesse. A cold and revealing history of an American archetype, sure to appeal to readers whose lives have been affected by AIDS, and it might do well as required reading in medical school.

Kirkus Reviews