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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.
Based on interviews with nearly eighty doctors; details the choices made in treating a controversial & unknown disease.
Morbidity and Mortality Weekly Report, June S, 1981
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...
|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|
|Glossary of Medical Terms||299|
|Index of Physicians Interviewed||305|