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

  • by John Ferrannini, Assistant Editor
  • Wednesday August 16, 2023
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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
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," 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 socially — 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."

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, 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 severe immune deficiency, so that's possibly one of the factors.

"Another is that the drugs we've prescribed have gotten less toxic, but a lot of people living with treated HIV for a number of decades were probably exposed to some of the earlier drugs that had chronic side effects—more some of the earlier drugs that might've caused lasting damage, like AZT, d4T, which are probably the ones that caused some of the long-term side effects." he added. "The fat atrophy, the loss of fat in the face, was probably more due to d4T than anything else."

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 — and drugs like AZT that showed some effect against HIV in the 1980s (In 1987 AZT became the first HIV treatment approved by the federal government) — have had lasting effects.

People whose HIV infection had progressed to AIDS may have a worse prognosis than those who'd always had a higher CD4 count.

"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, so we really do think people who get started on treatment — those drugs really will suppress the virus in most people," Volberding said. "The CD4 count recovers to a high range."

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.

Volberding said two questions in particular would be helpful in unlocking a cure to HIV infection. First, when viral loads are undetectable in the blood, where is the virus?

"The amount of virus in people successfully treated is so low it's hard to find it," Volberding said. "There might be an occasional virus particle in the blood, in various tissues, in the lymphocytes, which are the main home of the virus, and also probably in other cells."

Second, why does HIV affect some people and not others? Volberding said that about one in 200 people with HIV — elite controllers — have antibodies to the virus that keep the infection in check to the point where they rarely if ever develop AIDS, even without antiretroviral treatment.

"If there's any group that gives us reason to be optimistic, it's a small number of elite controllers: people who are healthy, who've been infected, but who've never been treated," Volberding said, calling them a "very, very acute area of fruitful research."

Veteran gay rights activist Cleve Jones, second from right, a long-term survivor of HIV, led a rally in San Francisco's Castro district in 2022. Photo: Jane Philomen Cleland  

Survivors of epidemic face loneliness
While not an elite controller, Cleve Jones acquired HIV infection before it was even discovered, and hung on 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 hep B research helped lead to a vaccine in 1981.

"In a sample of my blood taken as long ago as the winter of 1978-9, I was already infected with HIV," Jones said. "There were no effective treatments for a full decade after that."

Jones, a 68-year-old gay man, reflected on some of the compounding issues faced by people in his age group and sexual orientation. Jones painted a picture of how homophobia, the aftermath fight against AIDS, and what was believed to be a horrifying death at a young age have left survivors lonely, exhausted, and broke.

"LGBTQ people in general — but especially gay men of my generation — the majority didn't retain the affection and support of our biological families," Jones said, illustrating how many older gay men lack the family support that straight people the same age often depend on.

"A great many of us spent those first two decades of the 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."

Asked how having an HIV infection for over 40 years affects his health now, Jones agreed with Volberding that it's hard to say.

"I have experienced significant health challenges and most of my friends my age have as well," Jones said. "Most of my friends my age suffer from the effects of the drugs, have lipodystrophy, lipoatrophy, [and have] scars of various kinds from interventions that went wrong."

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.

The Elizabeth Taylor 50-Plus Network is so named because the "Elizabeth Taylor AIDS Foundation was the lead funder for the 50-Plus Network with its five-year grant commitment to the program. That funding was awarded in 2015 and is now renewable on an annual basis, so the program will continue to be named in Elizabeth's honor," Chad Ngo, SFAF's former communications manager, stated to the B.A.R back in 2021. The late actress established the foundation that bears her name in 1991.

"Fifty-Plus is made up of people from the AIDS generation — people who survived through the AIDS epidemic," Crisostomo said at that time. "There's a lot of trauma, a lot of unresolved feelings in the community.

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

Shortly thereafter, HAART became available; but 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.

Paul Aguilar, a long-term survivor of HIV, 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, 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 their own picture of a community who are finding it difficult accessing services competent to address their needs.

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

Said Brown: "Everything is geared toward younger people."

"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."

Brown agreed: "For example, you look for independent housing. They [AIDS groups] didn't plan on that when they started, because we didn't expect to live."

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 don't get the needs of the older generation.

"They didn't understand the trauma, because all their new HIV patients were under 35," Aguilar said. "The only people who understand are people who've been through ethnic cleansing."

Added Brown: "The people who knew about us are also dying."

Aguilar echoed Jones' remarks about the lack of family support.

"A lot of gay men came to San Francisco because their families kicked them out because they were gay, and they built a chosen family," Aguilar said, adding these social networks were decimated from 1981-1996. "Now, we don't know who can take care of us."

And the government isn't necessarily of much help, either. Meeting other requirements, people with an HIV infection and an opportunistic infection that makes it hard to do everyday activities qualify for Social Security Disability Insurance. But that's only available until Social Security retirement benefits begin.

"Some of us are on disability, but are going to have to go to regular [retirement] Social Security soon," Aguilar said. "A lot of us haven't paid into it for 30 years, because we've been on [Social Security] disability."

Aguilar said he knows of people who've taken on full-time jobs "just to pay rent" once they lose their disability benefits.

All agreed there needs to be more research of the effects of HIV infection on the elderly; Aguilar said he agrees to every study for which he's eligible, but Brown said that "being 79, the opportunities are few and far between" for her to participate.

Added Crisostomo: "Someone needs to do something."

SF must be model of care
Another one of the problems 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 agreed that service providers judge them based on how service providers perceive how they acquired the virus.

"It's like an immediate stigmatism," Brown said. "The letters HIV is a stigma, in and of itself."

Aguilar said many people with HIV don't like being talked down too.

"Aging services infantilize people, and our community doesn't appreciate that," he said.

Added Crisostomo: "It's like we're fighting, in the aging world, the same fight we fought in the 1980s. ... In the 1980s, we revolutionized the health care system. Now, we need to do the same for the aging system."

In an attempt to do just that, Crisostomo and other long-term survivors drafted a statement of principles in 2020 demanding greater inclusion in policy making. It was dubbed the San Francisco Principles, a reference to the Denver Principles of 1983, when people with AIDS demanded representation and inclusion in research, care, treatment, and policymaking.

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."

This story was made possible by a grant from AARP to the News Is Out collaboration. For more stories in the Out and Aging series, go to newsisout.com/out-and-aging/.

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