Coronavirus Lessons From Veterans of the AIDS Epidemic

For some, the coronavirus pandemic brings back memories of the struggle against AIDS and serves as a reminder of San Francisco in the early 1980s. This is especially true for those who helped lead that fight 40 years ago.

"1981 was an amazing year," Dr. Paul Volberding recounted recently. He had just finished his training as an oncologist — a cancer specialist, and on rounds the very first day he recalls seeing "the first patient with Kaposi’s sarcoma that was admitted to the hospital."

It all started as part of a curiosity for Volberding. "To me, it was a very interesting cancer. Wow!" he recalls thinking about the 22 year old who was his first patient. "I looked in the books and it wasn't supposed to be in 22 year olds at all," Volberding said.

Volberding was suddenly on the frontlines of a mysterious illness during a crisis where medicine, public health and politics collided head on.

The contrast of the confusion regarding AIDS then, to what we know today is stark. "Today, we know exactly what COVID-19 is, right down to its gene sequencing. The virus is already being studied for possible clues to effective treatments," Volberding said.

With AIDS, it was years before scientists discovered exactly what caused it. Until that was known, there was fear — bordering on hysteria at first — that the disease could easily be passed along through sneezing or touching, eerily reminiscent of the novel coronavirus today.

Roma Guy remembers AIDS as "this mystery disease," where people were "falling like flies," and no one knew why. Guy was an organizer in the women’s community in San Francisco at the time. As the AIDS toll mounted, she described the prejudice against those diagnosed with the illness, especially gay men and people of color.

Guy, who went on to serve as a city health commissioner, says AIDS was like a medical earthquake that forced a new way of thinking. "The public health system had to go through a whole transformation," she said, because it wasn't set up to deal with this kind of epidemic at the time.

In 1982, Diane Jones, now Guy's wife, had just graduated from City College of San Francisco School of Nursing and went to work at San Francisco General Hospital. She ended up working on 5B, the world's first inpatient HIV unit, for 15 years. Fear was one of her most vivid memories from that time.

"I could come in at eleven o'clock at night and there would be patients with three meal trays stacked up outside the room because people were too afraid to go in and nobody was really giving any guidance," Jones recalled. "This issue of really not knowing for certain how it's transmitted is really different than the situation that we have right now with the coronavirus."

Largely forgotten, said Jones, were women — many of them lesbians who were helping gay men have children by using the "turkey baster" method, as she called it. Those artificial inseminations left them worried about becoming infected with the virus.

"They would have to beg over and over and over again to get a test after the test was discovered or to be really examined and determined that they had AIDS. Why was that? Because they weren't perceived to be at-risk," Jones said.

During this time, San Francisco’s public health director was Dr. Mervyn Silverman. "I hate to say, but we didn't know what we were doing back then in those early stages," acknowledged Silverman, now 81.

Silverman says that before AIDS, public health departments were focused on relatively mundane things like inspecting restaurants and running STD clinics.

AIDS changed that. As Silverman remembers it, the AIDS crisis forced the city to prioritize the public — giving funds to gay and lesbian community groups which took the lead on AIDS education and prevention.

"I can't remember us funding other things in those days like that. But it made our life easier and it made what we did much more effective," Silverman said. Today it's routine to partner with community-based organizations to do culturally competent health education and outreach.

In addition to health workers, community organizing took place in cultural centers like Paul Boneberg's bookstore in San Francisco's Castro neighborhood. The store quickly became the epicenter of the AIDS epidemic and Boneberg co-founded a group called Mobilization Against AIDS to help answer questions and calm the nerves of the city's terrified gay community.

AIDS wasn't political at first, Boneberg recalls, it became more so with anti-gay ballot measures and a lack of action from the federal government.

Boneberg says the focus shifted to working to get things moving more quickly. "Meaning let's try to get money for research. Let's try to get money to care for people," he says. Later it became more political, "when the roadblocks to getting that funding and then civil rights attacks occurred." Initially, the first response was similar to now, he says, which is how can government move faster?

There were divisions that tore apart the city's gay community, such as whether to close bathhouses, which many saw as symbols of gay liberation, but others viewed as places where the virus easily spread. Silverman initially saw the bathhouses as places where men could be educated about the risks of AIDS, but he eventually ordered them closed.

Boneberg would like to think AIDS has informed the current coronavirus experience. "We need to unify," he says and "focus on testing and treatment for COVID-19 rather than dividing along political lines."

For Dr. Volberding, who lived and worked through the darkest years of the AIDS epidemic, says much of what they learned then is relevant today. "The response to COVID-19 today leaves plenty to criticize — not enough test kits, lack of protective equipment for health care workers and mixed messages from the federal government."

And the lessons from 40 years ago are still very important to heed. "Some of the most important lessons were the connection between medicine ... the public health system, the political system, [and] the linkages that formed. I think those are obviously incredibly important lessons for today," Volberding said.

Activist Roma Guy hears echoes from the past in the national presence of Dr. Anthony Fauci, who became director of the National Institute of Allergy and Infectious Diseases to have more of an impact on the national response to the AIDS epidemic. Speaker Nancy Pelosi is also an echo of the past. Pelosi was first elected in 1987 on a promise to get more federal funding to fight AIDS.

"You have Fauci standing up there. You have Pelosi standing up there who were at the epicenter of AIDS and have learned the essential lessons of what you do when you have a health challenge," Guy said, emphasizing how the response becomes part of public health and then part of the governing structure. "That is an amazing lesson on the backs of people who died early of AIDS."

For Silverman, the former health director, it was both exciting and deeply distressing. "It was fascinating, frustrating, depressing and exhilarating. All those kinds of emotions all at once depressing because you looked at your friends and they were dying off, going to a memorial service all the time. But also exhilarating, seeing the energy and the excitement in the way people were working together," Silverman said.

Boneberg believes the lesson of the AIDS epidemic is that there's no time to waste. "We need to all work on this together to make it happen and go faster. We always need to go faster, go faster, go faster. Get on it, move it forward. And those imperatives that come from the HIV/AIDS response are applicable right now."