Pioneers in AIDS Care — Reflections on the Epidemic's Early Years (NEJM)

[pinto]

Compelling and moving first hand accounts of the early docs and the AIDS medical crisis. This is from New England Journal of Medicine.


Pioneers in AIDS Care — Reflections on the Epidemic's Early Years
Ronald Bayer, Ph.D., and Gerald M. Oppenheimer, Ph.D., M.P.H.

In 1995, Constance Wofsy, who had been a leader in San Francisco's response to AIDS in the 1980s, recalled the way she and other physicians had been drawn to the nascent epidemic. "How gripped we were," she said, "How separate we were from everyone who wasn't part of the thing. There were the involved and uninvolved, and they just didn't understand one another."

In July, a tape recording of these recollections, made a year before Wofsy's death, was heard by 17 doctors who had come together in New York to commemorate the 25th anniversary of the first reported AIDS cases. The participants were among 76 first-generation AIDS doctors whom we had interviewed in the 1990s for an oral history documenting the U.S. epidemic.1 At the day-long July meeting, they looked back on their work, shared memories of the darkest years, recalled the exhilaration of the first prospects for effective AIDS treatment, and ruminated about who would step in to care for future patients.

The group vividly recalled pervasive institutional and professional resistance to caring for patients with AIDS during the early 1980s. How could they explain why they had decided to take on this burden — a decision that had shaped their lives in unanticipated ways? At the time, most were young and beginning their careers, unencumbered by established commitments. But there was more to it than that. For gay and lesbian doctors, the suffering in their community provided sufficient motivation. For others, the AIDS crisis tapped into long-held views about the social mission of medicine and the need to care for the marginalized and despised. Wafaa El-Sadr, who developed the AIDS program at Harlem Hospital, said the epidemic had opened new worlds to her by demonstrating the importance of engaging in a genuine way with patients and drawing on their strengths.

Many felt compelled by geography: being in New York, Los Angeles, San Francisco, or Miami made the epidemic hard to ignore. Pediatrician James Oleske remembers feeling that in the impoverished community of Newark, New Jersey, he had no alternative but to care for babies and children with AIDS.

<much more>

http://content.nejm.org/cgi/content/full/355/22/2273?query=TOC