Gerald Oppenheimer (left) and Ronald Bayer interviewed 75 physicians to gain perspective on the experiences of doctors who fought the earliest battles in the war against AIDS.
The year was 1981. Doctors across the country were beginning to see signs of a strange new degenerative disease affecting mainly drug addicts and gay men. The vast majority of people in the medical profession turned their backs on the disease, hoping it would just go away. Luckily, a small number of physicians were there to answer the call to fight.
Various motives brought the first wave of doctors to the front of the war against AIDS. Some were drawn by the excitement of confronting a new disease, while others were committed to helping underserved segments of the population. "Whatever drew them, they shared this common experience of colleagues who treated them with a kind of contempt," says Ronald Bayer, professor in the Mailman School of Public Health, who recently co-authored the book, AIDS Doctors: Voices from the Epidemic (Oxford, $25), along with Public Health associate professor Gerald Oppenheimer.
Most medical professionals kept a safe distance from AIDS, Bayer says, because they were afraid that the disease would ruin their departments, bring in "undesirable" patients and possibly infect them. Thus, early on, AIDS doctors encountered both enormous hostility and a lack of peer interest when seeking research and administrative assistance. These reactions only exacerbated the scientific obstacles that AIDS doctors found themselves battling, trying to tame a disease that was growing increasingly ruthless, physically ravaging nearly all who contracted it.
"This disease rendered [doctors] impotent," Bayer says. "Most American doctors were not used to dealing with diseases they couldn't cure. Before AIDS, infectious diseases was a field for optimists."
In the beginning, there was little or no real treatment for AIDS patients. Unable to detect the virus, doctors were fighting a disease with an unknown cause, which made retaliation nearly impossible.
"The ailments were not normal. Nothing in the contemporary experience of doctors looked like it," Bayer says. "One physician said she felt like a 'travel agent for death.' There was nothing she could do but help patients [who were] on their way to dying."
"Death came to define AIDS," Oppenheimer says.
In response, doctors returned to techniques employed before the anti-biotic era, searching for methods of comforting their patients and easing severe pain whenever possible. The experience forced many doctors to re-evaluate the concept of "caring" for patients.
"They came to an understanding that being a doctor involves much more than giving medication and ordering tests," Bayer says. "It made them take a glimpse at the soul of medicine. You can heal when you cannot cure. I think many doctors discovered that."
Personal motivations were also a factor for the doctors. The average age of those who took up the cause in the early stages was only 35. Unlike senior physicians who already had established practices, Bayer says many took advantage of the opportunity to set their careers in motion and once AIDS became a more mainstream concern, many assumed a professional status that might not otherwise have been available to them so quickly.
Other doctors, who happened to be gay themselves, were especially compelled by the opportunity to help patients from their own community, and many who were treating AIDS saw it as an occasion to "come out."
By the end of the 1980s, those dedicated to fighting the disease were exhausted, disheartened and rather pessimistic about the prospect of winning the battle. Many had spent nearly a decade watching young patients, generally in their 20s, 30s and 40s, die off without a chance. The marketing of the drug AZT in 1986 became the first sign of hope for patients, but Oppenheimer notes that the drug also "came to symbolize the limits of progress."
Finally, the struggle and relentless research paid off. In the mid-1990s, class of drugs known as protease inhibitors and multi-drug therapies began producing encouraging results in patients.
"Many doctors were initially skeptical about the new drugs because of their disappointments with AZT and other agents," Oppenheimer says. "During the 1980s and early 90s they'd been on a roller coaster of high hopes and dashed expectations." However, Oppenheimer notes, after seeing the results of the clinical trials of protease inhibitors, "even the skeptics began to fell, 'this looks really good.'"
In researching the book, Bayer and Oppenheimer interviewed 75 doctors for a total of 300 hours. Of the 75, eight are graduates of the College of Physicians and Surgeons. The effort has produced approximately 8,000 pages of transcript that will be housed in the Columbia Oral History Archive, available for academic researchers.
The interview process proved especially emotional for the doctors, and the authors recalled a number of occasions when they and the interview subjects were brought to tears.
The book proves that the struggle against disease has a greater human factor and dependence than many might believe. It reveals that the doctors' will to help was as important as their means. "Most of them are ordinary people who were able to rise to the occasion when the times demanded it," Oppenheimer says, who compares the response of the early AIDS doctors to those in the resistance during World War II. "It was just the right thing to do."