AIDS at 40: Survivors reflect on epidemic
- Print This Page
- Send to a Friend
- Comments (0)
- Share on Facebook
- Share on Twitter
- Change Font Size
On July 3, 1981, the headline "Rare Cancer Seen in 41 Homosexuals" appeared in the New York Times. It came about a month after the federal Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report noted five cases of pneumocystis pneumonia among previously healthy gay men in Los Angeles.
It was the beginning of the AIDS crisis — though it wasn't called that at the time — a pandemic that would decimate the LGBTQ community. The disease first became known to the gay male communities of New York City, San Francisco, and LA, but quickly spread to other communities, including hemophiliacs, women, and transgender people. The administration of then-President Ronald Reagan did little to help — he first uttered the word publicly on September 17, 1985 — and many members of the religious right, such as the late Jerry Falwell, said that AIDS was "God's punishment" for "sinful lifestyles" — a view some continue to believe.
An enraged queer community took to the streets in protest, forming ACT UP, the AIDS Coalition to Unleash Power. Demonstrators blocked traffic, chained themselves to government buildings, and undertook other actions, demanding that something be done to quell the endless cycle of disease and death.
It was a time when the community came together, not only in protest, but also to help take care of each other. In San Francisco, numerous nonprofit organizations formed to provide critical services to those living with HIV.
Since the mid-1990s, HIV has, for many, become a treatable disease thanks to the drug cocktails that became available. More recently, antiretroviral treatments have helped thousands lower their viral loads to undetectable, which helps prevent the spread of the disease because it is untransmittable. Other drugs, such as PrEP, have kept HIV-negative people protected from contracting the virus.
Though many people with HIV can now live productive lives with the help of medication, it's important to realize that AIDS is not yet curable and there is no vaccine. The drugs do come with side effects, and even with the medications, some people still die of AIDS-related complications.
It's hard to believe that it's been 40 years since AIDS first reared its ugly head. For this milestone anniversary, the Bay Area Reporter spoke with three long-term survivors: Gabriel Quinto, a gay man who sits on the El Cerrito City Council; Tez Anderson, a 62-year-old gay man who was first diagnosed in 1986; and Marc Huestis, 66, a gay man who took an HIV test on the day it became available in 1985.
From illness to political office
"I never thought I'd end up getting this old," said Quinto, 60, who has lived with AIDS since 1988. "But here I am, and I owe it to so many people who have been so kind to me through the years in supporting me and taking care of me when I was in a place that many of us didn't survive. I'm a survivor; I'm a true survivor. I don't know why I'm still around, but I am truly one of the lucky ones."
Quinto added that living with HIV has been difficult, especially in the early years when the news wasn't good. He recalls a federal government that failed to take care of its constituents. He remembers dealing with a lot of illness and staying in bed and dealing with deep depression for many years.
"Not being able to think about a future," he said, "or to do anything. It was a deep, deep hole that I was in and something that many in our community know about, afraid to talk about it with anyone. I was lucky enough to join different groups in Los Angeles, a peer group and we took care of each other. I'll never forget that the guys that were part of that group, most of them are gone now. I'll never forget them, they were so kind to me, and we all took care of each other by helping each other do errands, going to the doctor, and just day to day things."
Later moving to San Francisco in 1995, he recalled his time as both a client and a volunteer for the Shanti Project. Quinto's volunteering led him to become more political.
In 2012, he volunteered for a presidential campaign, becoming a Barack Obama delegate for his reelection campaign. He moved to the East Bay and decided to run for public office himself. Now in his second term on the El Cerrito City Council — he was reelected in 2018 — he serves as mayor pro tem.
"I learned how to engage and to get myself out of the day-to-day funk that I had for many, many years," Quinto said. "Days of depression, days of just feeling tired all the time. The day-to-day thing of going to the doctor all the time, getting blood work done and getting more tests done. You look at all of the things that science has brought, and science has brought this disease to a place where you can actually deal with it day-to-day now. I'm so happy about that, I just wish it came a little earlier. We're missing a huge generation of women and men, many of them the most talented people that I've ever met."
In addition to his political work, Quinto has a partner, Glen Nethercut, who he's been with since 1997. They've been in El Cerrito since 2001. He feels proud to be one of the first LGBTQ Filipino Americans to be an elected official and he was the first known HIV-positive person elected to office in the Bay Area when he first won his seat in 2014.
"We're just in the beginning stages still," he said. "And I see that in many communities of color, the minority communities, I see a new group of leadership that are stepping up because they know the importance of representing. I'm so proud to be president of the LGBTQ caucus of the League of California Cities. It's something I enjoy doing."
Let's Kick ASS
Anderson wants to remind people that AIDS is still very much part of society. He noted that for many, AIDS has fallen off the radar.
"The reality is that the only ones who still care about HIV/AIDS are the 1.2 million people living with it," he said.
Not one to sit idly by, Anderson formed Let's Kick ASS (AIDS Survivor Syndrome) in 2013, a grassroots community-led organization. Its primary focus is to improve the quality of life for long-term survivors and older adults living with HIV. It is an all-volunteer movement which, according to its website, is "united in compassion, committed to action, and insisting on visibility." LKA also fights ageism.
Anderson also started HIV Long-Term Survivors Awareness Day in 2014, which is observed on June 5, the date widely associated with the start of the epidemic.
"HLTSAD has since become an international day to celebrate and honor HIV long-term survivors' strength and resilience," he said. "At the same time we are focusing on the unmet needs and challenges facing HIV long-term survivors."
Anderson said that after all these years of living with HIV, his health can be unpredictable.
"Some days I'm OK. Other days my energy and fatigue keep me in bed all day. I'm fighting the impulse to just give into just going back to bed, but often the mattress wins. What is most concerning is that the community doesn't understand the complexities of aging and what it feels like to have survived now two plagues," he said, referring to AIDS and COVID. "We are a resilient bunch, but they only see us as old, if they see us at all. We are warriors with the battle scars and mass casualties to prove it. I, for one, do not put up with being excluded. I just wish it weren't so damn hard all the time."
Anderson wants the younger generation to know that AIDS isn't over.
"While we've come a long way since the days when our loved ones and community were dying, we still have a lot of work to do," he said. "Survivors feel forgotten by the communities we helped form. Bringing agencies along has been like pushing a boulder up a hill."
Anderson continues to increase visibility for HIV long-term survivors. He is featured in "Pride," a six-part docuseries that chronicles the fight for LGBTQ equality from 1950-2000. Anderson is in "The 1990s: The Culture Wars" episode talking about surviving AIDS. The show can be streamed at FX on Hulu.
HIV has not stopped Huestis from living a full and productive life. Throughout the 1980s and 1990s he was an award-winning filmmaker. He spent the better part of two decades producing and hosting shows at the Castro Theatre, in which he would screen a classic film with a cast member from the film in attendance for an onstage Q&A and a meet and greet. His shows were met with much acclaim and often sold out. These days Huestis is enjoying a life of quiet retirement in Palm Springs, where he continues to deal with his HIV.
"The time passed pretty quickly. My virus is now older than most people in San Francisco," he quipped, before getting serious. "That time was such a traumatic period. I consider it the best of times and the worst of times, because from the moment we first realized that something weird was going on through when the cocktails started to really hit, the community was very cohesive and very together. We really took care of each other and we created the modalities for how health care should be."
He recalled the early days as being scary. His first memories of the plague are seeing photos of Bobbi Campbell's Kaposi's sarcoma lesions in the windows of the old Star Pharmacy, which stood on the corner of 18th and Castro streets. Campbell (1952-1984), a nurse, was a gay San Francisco man and the first to come out publicly as a person with AIDS. He referred to himself as the "AIDS Poster Boy."
"There were a lot of people crowded around the pictures with a gulp in their throat, scared," Huestis recalled. "And he became a real important person in terms of creating a voice for the early people with AIDS."
But people dealt with it, according to Huestis. People took care of themselves, their friends, and each other. Huestis began to create art that reflected what the community was going through, such as his acclaimed 1986 documentary "Chuck Solomon: Coming of Age," a portrait of Solomon, a gay man who was a mainstay of San Francisco theater. The film told of his courage in facing his AIDS diagnosis.
"I'm just blessed that I survived it. I was on an AZT trial very early on and I survived that and I'm not one of these people that disses AZT because I do think it got me from point A to point B. It certainly helped with COVID because I was not as fearful," he said of the controversial first drug approved for HIV. "Honestly, I survived AIDS and that was a lot harsher. It wasn't everywhere, but seeing people on the streets week by week, dying or turning into skeletons or being in wheelchairs or seeing the 'For Rent' signs popping up everywhere in the Castro, to me that was a lot harsher than what happened with COVID."
Huestis said that he kept himself healthy during the COVID crisis by staying home and by wearing a mask when he was supposed to.
He said that he doesn't really struggle with HIV these days. His doctors tell him that he's doing great as far as AIDS goes, but it's other things, health issues that come with aging, where he sees his struggles.
"High blood pressure, being overweight, and now I had all my teeth extracted the other week," he said. "Old age stuff, not HIV stuff. The only good thing about getting my teeth extracted and getting these fucking dentures, which I hate, is that I lost already 13 pounds. It helped me lose weight, so that's a good thing."
Huestis is aware that young people today don't understand what people went through during the peak years of the AIDS crisis in the 1980s and early 1990s.
"Every generation has their own horrors and their own nightmares that they go through and no one else is going to understand or comprehend that," he said. "I'm glad there's PrEP. I will say that my kidneys have suffered from taking all those HIV drugs, and there are side effects to them. And when I mention that to people, some people get pissed off that I'm being anti-sex because I'm not completely extolling the virtues of how great PrEP is. It certainly is better than what it was, but sometimes the piper gets paid, and these drugs are not that great for your body."
When asked what he was hopeful for, Huestis replied that he wanted to be alive in 10 years.
"It's a pendulum swing," he said. "It goes back and forth. I'm hopeful that this part of the pendulum goes pretty well."
Huestis noted that he likes President Joe Biden, and that he feels proud that he was one of those who endorsed the president early on, because Biden has, according to Huestis, shown himself to be a "mature, compassionate human being."
"So, I'm hopeful that he'll get some stuff done," Huestis said. "And I'm hopeful that people can find the goodness within themselves and not completely just be so negative that they lose touch that life is short and precious. I've turned into a positive person in my old years! But my life turned out to be really blessed, and I'm going to enjoy it while I can and not feel guilty about it."
Help keep the Bay Area Reporter going in these tough times. To support local, independent, LGBTQ journalism, consider becoming a BAR member.