Long-term HIV survivors fighting for their lives all over again

by John Ferrannini

The fight against the HIV epidemic has seen a number of good milestones lately – the World Health Organization reaffirmed July 22 hat those who consistently take antiretroviral treatment and maintain undetectable viral loads don’t transmit the virus during sex. Meanwhile, among HIV-negative men who have sex with men seen at San Francisco City Clinic, PrEP use increased each year from 2014 to 2021. Gay and bisexual men who don’t inject drugs accounted for less than half of San Francisco’s new cases in 2021 – for the first time since AIDS was first recognized here more than 40 years ago.

But those who’ve acquired HIV infection tell the Bay Area Reporter that they’re still fighting for their lives.

“As HIV gets older, so are we getting older,” Hulda Brown, a 79-year-old straight ally, said in a recent interview. “We need different housing, safer housing, and chairlifts. You may need to walk with a cane. As you get older, we’ve had to adjust. We need a place to go to find services to explain to us the changes happening in our body, and how we can adapt.”

Brown, who believes she was infected in 1991, is among the first generation of people growing old with HIV infection. Since the virus that causes AIDS was first identified in 1983, Brown is on the edge of medical uncertainties about how HIV affects older people.

“The studies don’t go to the age of 79,” Brown said. “We don’t even know what’s happening to our bodies.”

But just as importantly, Brown and the three other long-term survivors that the B.A.R. spoke with recently are also charting new territory so- cially – not necessarily having expected to be alive this long–as well as in terms of what it means to age with dignity.

“In the 1980s, we revolutionized the health care system,” Vince Crisostomo, a 62-year-old queer Chamorro man who’s the director of aging services at the San Francisco AIDS Foundation, told the B.A.R. “Now, we need to do the same for the aging system.”

Dr. Paul Volberding saw his first AIDS patient on July 1, 1981 – his first day on the job at San Francisco General Hospital, and just days before an article in the Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report alerted medical professionals the world over to an epidemic that at the time had no name, no known cause, and – then as now, no cure.

Volberding, a straight ally, later helped the hospital open its own specialized AIDS ward. Now 74, he’s a professor emeritus at the University of California, San Francisco.

Volberding told the B.A.R. that the effects of the interaction between long-term HIV infection and aging are still largely unknown.

“We haven’t followed people long enough to know exactly what the life expectancy is,” Volberding said. “Those people who are dying somewhat earlier were at a point with AIDS where they had