Essay: Treating the Earliest Cases of AIDS

AIDS researcher Dr. Paul Volberding was one of the first doctors to study the disease in the early 1980s. He worked at San Francisco General Hospital, the first facility to dedicate a ward to the disease . He is now the vice chair of the department of medicine at the University of California, San Francisco and co-director of the university’s Center of AIDS Research.

We asked him for his reflections on the 30th anniversary. Read them below:

“I started working at San Francisco General Hospital on July 1, 1981, my first day as a newly minted faculty member and my first real job as a 31-year-old. I was making my rounds and seeing patients with an oncology trainee just arrived from his residency in New York when I met my first AIDS patient.

And what a striking case he was. Twenty-two years old, covered with the lesions — purple skin nodules and plaques — of Kaposi’s sarcoma and cadaverous from severe wasting. It was an immediate introduction to the horrors of AIDS and the fascination of confronting a completely unknown human disease. My colleague commented that similar cases were being seen in New York, but this was several weeks before the very first notification of “Kaposi’s sarcoma” as part of this new disease in the medical literature.

Cases began to appear with increasing frequency. AIDS in those days was disfiguring, debilitating, stigmatizing and inevitably fatal, usually within months of first diagnosis.

We could do nothing to reverse the disease. All we could do was try to treat the infections and cancers that resulted from the immune deficiency and to control the many and accumulating symptoms every patient developed.

Chronic diarrhea, dementia, blindness, unbearable headaches, drenching sweating and faces and legs bloated from fluid collections caused by Kaposi’s sarcoma were only some of the problems we tried to control as our clinic became inundated with AIDS patients.

The initial response to AIDS was erratic and some health workers responded well immediately, while others did not. We had recurring cases of meals being left on the floor at the door of AIDS patients’ rooms and of nurses refusing to help changes bed sheets drenched with sweat during the night.

It was this variable response that led us to establishing the world’s first AIDS inpatient ward in mid-1983.  Ward 5B was nursing led and all volunteers choosing to work with AIDS. But in part it arose from fear and a less than ideal professional response.

I recall distinctly my own fear. My wife, Molly Cooke, was also an early HIV doctor, and we were having our children in the early epidemic years. They were born in 1981, 1984 and 1987. I had recurring nightmares of having given AIDS to my kids at a time when we had no way to know what the cause was, how it might be transmitted and what the incubation period might be. Some of my colleagues remember no particular fear. I do.

But the need for our care was palpable. We quickly realized that our patients, who were almost all young gay men — and frequently estranged from their traditional families — had sources of support in the gay community. Existing groups pivoted to take on roles in AIDS care and new non-profits emerged as well. The medical community formed deep partnerships with these organizations, an essential element of what we called the “San Francisco model” of AIDS care.

We also quickly, and with little formal planning, created multidisciplinary care teams that included nurses working with doctors, phlebotomists, pharmacists, social workers, receptionists-all coordinating to improve care to AIDS patients. All were drawn by the compelling need of our patients, despite the fear of contagion hanging over our heads and despite the stigma we often faced from our friends and colleagues.  AIDS was hardly a glamorous calling in the early epidemic.

When facing an exploding novel epidemic, research became a vital response. Working both at the University of California San Francisco and at San Francisco General Hospital, our initial “team,” Connie Wofsy, Donald Abrams and myself, eagerly sought to study this disease and develop treatments. In 1982, even before HIV was identified, I started a clinical trial of interferon for Kaposi’s sarcoma and gave my first TV interview for KQED.

The hope that this and other research gave our patients otherwise facing certain death attracted even more AIDS patients to “the General” as we affectionately called SFGH. We also became close to political leaders and the public health authorities and learned to work together in growing the San Francisco model of AIDS care and to make ourselves open to the media who helped the public understand this new challenge. By telling what we did, or didn’t, know and by showing compassion in our care, I’m convinced we helped avoid even more panic and discrimination. Those things did happen, but hardly ever here in San Francisco.

Thirty years later and counting, so much has changed and all for the good. We’ve learned a lot about ourselves and this virus. But few people that felt the calling to HIV and AIDS have left the battle. We do hope to be replaced — and pretty soon — by the next generation. We hope they can learn from our experiences and most importantly our mistakes. In the words of Jerry Garcia, what a long strange trip it’s been.”

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