Vince Crisostomo, a long-term survivor of HIV, stood outside at a rally promoting the San Francisco Principles, which looks to promote policies for HIV and aging. Photo: Courtesy Vince Crisostomo

The fight against the HIV epidemic has seen a number of good milestones lately – the World Health Organization reaffirmed July 22 that 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,” said 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.”

Brown and three other long-term survivors whom the B.A.R. spoke with are charting new territory socially as they weren’t expected to live this long. In addition, they are showing what it means to age with dignity.

“In the 1980s, we revolutionized the health care system,” said Vince Crisostomo, a 62-year-old queer Chamorro man who is 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.”

The effects of age on HIV

Dr. Paul Volberding saw his first AIDS patient on July 1, 1981 – his first day on the job at San Francisco General Hospital. That was 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, told the B.A.R. that the effects of the interaction between long-term HIV infection and aging is 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 severe immune deficiency, so that’s possibly one of the factors.” 

The advent of highly active antiretroviral therapy, or HAART, in the mid-1990s has been the most important game-changer in the fight against HIV. Without treatment, the latency period between infection and the development of AIDS was – on average – about a decade. But with treatment, the condition can be managed to the point where people with HIV can live a near-average lifespan. How close to average is what’s not certain, Volberding said.

Some early HAART treatments that showed some results against HIV in the 1980s have had lasting effects. The federal government approved one such treatment, AZT, in 1987.

“I think most of us would think it probably is bad for your body to have had immune deficiency; that there probably is some degree of damage that is permanent,” Volberding said.  “We really do think people who get started on treatment – those drugs really will suppress the virus in most people. The CD4 count recovers to a high range,” he continued. 

As people get older, the effects of HIV, the early drugs, the natural aging process, and environmental factors are harder and harder to distinguish, Volberding said.

People with HIV “get heart disease, they get cancer, and those happen at a slightly higher rate, and a slightly earlier age in life. But most people with complications that are dying aren’t dying at 35, they’re dying at 65, 70, 75, which is when people without HIV die,” Volberding said.

Survivors of the epidemic face loneliness

While not an elite controller (A person living with HIV who is able to maintain undetectable viral loads for at least 12 months despite not having started antiretroviral therapy (ART), Cleve Jones acquired HIV before it was even discovered. He has lived long enough to be on antiretroviral therapy. 

In the 1980s, Jones co-founded the Kaposi’s Sarcoma Research and Education Foundation – later the San Francisco AIDS Foundation – and the AIDS Memorial Quilt. But in the heady days of gay liberation in the 1970s, he gave his blood as part of a study of hepatitis B, another blood-borne infection. LGBTQ+ participation in hepatitis B research helped lead to a vaccine in 1981.

Veteran gay rights activist Cleve Jones, second from right, led a rally in San Francisco’s Castro district in 2022. Photo: Jane Philomen Cleland

Jones, a 68-year-old gay man, reflected on some of the compounding issues faced by people in his age group and sexual orientation. 

“A great many of us spent those first two decades of the [HIV/AIDS] pandemic not only trying to fend off the virus, but also taking on the government, the pharmaceutical industry, and churches. We were in ACT UP, part of the quilt, created buddy programs. It was all consuming,” he said. “During that time we’d be expected to accumulate wealth and invest and prepare for the golden years, many of us did not, and though I didn’t max out my credit cards thinking I’d be dead in a week, I knew people who did.”

Jones and his friends estimate that 20,000 gay men of their generation died in San Francisco alone between the beginning of the epidemic and the advent of HAART. 

“Almost everyone I knew and loved the most is gone,” Jones said. “I’m a very positive person; I’m very involved with my union work, San Francisco, Guerneville; I’m very blessed with a lot of wonderful friends – and one very special friend – but the people who knew me the best? They’re all gone.”

Aging, HIV services need coordination

Jones expressed his appreciation for the AIDS Foundation and Crisostomo’s work in particular. Before he was the director of aging services, Crisostomo had been program manager of the AIDS Foundation’s Elizabeth Taylor 50-Plus Network.

“It really matters a great deal and has a profound and real impact on an increasingly vulnerable part of our community,” Jones said of Crisostomo’s work.

Crisostomo has been living with HIV since 1987. He was diagnosed with AIDS in September 1995. 

Shortly thereafter, HAART became available; Crisostomo had to face a difficult choice when he was diagnosed with lactic acidosis, a potentially fatal buildup of lactic acid in the blood, which was a side effect of his medicine. 

“The treatment that saved my life was also killing me,” Crisostomo told the B.A.R. “I thought ‘I can either take a chance with HIV – which I’d lived with for 10 years – or I can take this and die.’ So, I stopped taking the meds. I don’t recommend that to people.”

Crisostomo kept that a secret from his doctor, until “six months later, the doctor said, ‘OK you can stop taking them,’” he said. 

Crisostomo, Brown, and Paul Aguilar – a gay, 60-year-old long-term survivor who has been living with HIV since 1988 and who was a community grand marshal in this year’s San Francisco LGBTQ Pride parade – painted a picture of a community that is finding it difficult to access adequate services to address their needs.

Paul Aguilar stood in San Francisco City Hall on June 25, the day he served as a community grand marshal in the Pride parade. Photo: Courtesy Paul Aguilar

Crisostomo said that the problem is two-fold: on the one hand, aging services aren’t well equipped to handle elders with HIV; and HIV services are geared toward a younger cohort, though a majority of Americans living with HIV are older than 50.

 “Everything is geared toward younger people,” Brown said.

“We have no shortage of issues we’re facing,” Crisostomo said. “Because people didn’t plan to live, the agencies that serve us also didn’t plan to stay around. There’s a whole lot of services that need to coordinate.”

The problem is compounded for Brown, a Black woman.

“The community I’m from – HIV wasn’t planned for,” she said. “It was supposed to be a gay, white man’s disease, and so they didn’t take into consideration that any human can get it.”

Aguilar said that continuity of medical care is threatened, too. As the AIDS generation hits retirement, so too are their doctors.

“They are taking that wealth of knowledge with them,” Aguilar said, adding that other doctors, who didn’t see the darkest days of AIDS, often do not understand the needs of the older generation.

“They didn’t understand the trauma, because all their new HIV patients were under 35,” Aguilar said. 

Added Brown, “The people who knew about us are also dying.”

All agreed there needs to be more research on the effects of HIV infection on the elderly; Aguilar said he agrees to participate in every study for which he’s eligible. However, Brown noted, “being 79, the opportunities are few and far between” for her to participate.”

SF must be model of care

Another problem is that older HIV-positive people are all too aware of the stigma the infection carries. This can be a barrier to care, too, when accessing aging services.

“People are reticent to disclose their HIV status because of the discrimination from aging services,” Crisostomo said. “They might be more used to quiet seniors who play Monopoly.”

Crisostomo, Brown, and Aguilar say service providers judge them based on how  it is perceived they acquired the virus.

“The letters HIV is a stigma, in and of itself,” Brown said.

Aguilar said many people with HIV don’t like being talked down to.

“Aging services infantilize people, and our community doesn’t appreciate that,” he said.

To prevent that, Crisostomo and other long-term survivors drafted a statement of principles in 2020 demanding greater inclusion in policy making. 

Crisostomo said that San Francisco – which set the standard for AIDS care in the 1980s – needs to get it right.

“If San Francisco can’t come together to deal with our issues, I don’t know about the rest of the world,” Crisostomo said. “We are the model.”

The principles intend to apply the 1983 Nothing About Us Without Us motto of the Denver Principles to people aging with HIV.

“We need to change what it means to age,” Crisostomo said. “We’re the first generation to age with HIV. We’re the AIDS generation. It’s a new world.”

Crisostomo said that he’s helping to put together the first HIV and aging conference in Sacramento, September 18-19. September 18 is National HIV/AIDS and Aging Awareness Day.

Aguilar said it’s the fight for better services for those aging with HIV that helps him face each day anew.

“I was one of the people who told Vince I didn’t want to get up in the morning,” he said. “Act my age? I don’t know how to do that. I was not supposed to be this old.”

John Ferrannini is an assistant editor at the Bay Area Reporter.