Public Health Magazine: Spring 1996, Vol.4, No.1
AIDS in the Age of Incongruities
Powerful Stories About AIDS Care

Ron Bayer

Ron Bayer, Ph.D., has a story to tell. It's the AIDS doctors' story, and he wants to tell it in their own words.

Thanks to a five-year National Institute of Mental Health (NIMH) Scientist Award, Bayer, professor of public health, division of sociomedical sciences, can now complete an oral history of the experiences of the physicians involved with the AIDS/HIV epidemic. Eighty to ninety doctors will be interviewed across the country, from the world famous and well-established to residents and those unknown beyond their clinical practices.

"So many stories have been very powerful," Bayer says, noting that not only do these caregivers treat dying young people and those stigmatized by society, but they have to control their own involvement, deciding just how close to get to their patients. Too close, and the emotional burden can become overwhelming, threatening even their ability to practice.

Raising money for the project was difficult at times, despite the fact that "every time the idea was mentioned ... peoples' eyes lit up," Bayer recalls. Initial support came from the National Library of Medicine, followed by the Public Health Service and the Royal Marks Foundation. Now, the NIMH grant will see the project through to its conclusion, as well as provide funding, with the Toyota Foundation and the Japan Foundation for Global Partnership, for an investigation into how specific nations are handling the threat of blood transfusion-associated AIDS.

When first asked who he and his colleague, Gerald Oppenheimer, an historian at Brooklyn College, were going to train to do the oral history interviews, Bayer says he responded, "Why would we want someone else to do this? The fun of the project is sitting with physicians whose lives have been changed by this epidemic and learning ... what that experience has been like." Looking back over his own 14 years of AIDS-related research experience, Bayer attributes much of his early success to Mathilde Krim, Ph.D., a former board member of the Hastings Institute, a medical ethics think tank, where Bayer worked in the early 1980s. Now chairman of the American Foundation for AIDS Research, Krim asked Bayer and his co-workers to develop confidentiality guidelines for physicians working with people resistant to participating in AIDS research because they feared being deported, arrested, or losing their jobs.

"That project showed me that there were a host of crucial issues that were going to be raised by the AIDS epidemic," Bayer says. "At that time ... no one was talking about public health ethics or the ethics of epidemic disease because epidemic diseases were thought to be a thing of the past." In his NIMH grant application, Bayer emphasized the importance of having the flexibility to respond to emerging AIDS-related research issues that "can't be predicted three or four years ahead of time," he said. "For example, no one would have known a year or so ago that there would be a debate over diagnostic technology and HIV infection [see "Home Testing" in Short Takes]."

Still, while girding for the next big AIDS ethical dilemma, Bayer recognizes that controversial issues will continue to swirl around women, pregnancy, children and HIV infection, especially as organized medicine's capacity to treat HIV-infected children increases. "The tension between the child's interest in identification and the mother's right to privacy will get more difficult," he asserts. "We are already seeing proposed changes in the nature of the informed consent process during pregnancy, with HIV testing being viewed as a prophylaxis to prevent infection." -CZ