For Rick Vila, HIV will always be associated with roses. Vila became infected with HIV in the 1980s in San Francisco. The day he was diagnosed, a friend of Vila’s asked him to come over to his house so he wouldn’t be alone. As they worked in his garden together, Vila pricked his finger while pruning his friend’s rose bushes. “I scratched myself, and there were these three long lines of blood from rubbing against this rose bush. I looked at those lines, and I felt dirty. I felt like my life had been forever changed.”
Vila became involved with advocacy for other patients like him at organizations like the San Francisco AIDS Foundation and Project Inform, which connected patients to clinical trials, and slowly, he got past the stigma of his diagnosis. “Being HIV positive made me a better person, in some ways. It made me reach inside for strength I didn’t even know I had,” said Vila.
Vila lived long enough to access life-saving treatment for HIV/AIDS, and now lives in Palm Springs, California, with his husband, Ken. But that was just the first pandemic Vila would have to survive. While on vacation with Ken in Rhode Island in 2009, he came down with a mysterious flu, which it turned out was H1N1. Vila became the first H1N1 case in the state and spent three weeks in the ICU. Now, as California buckles under the coronavirus, Vila is watching it all again.
“A lot of the fears and anxieties of the COVID pandemic very much remind me of the early days of the HIV/AIDS epidemic, when there was no knowledge, and so much confusion and pain, and people were just dying every day.”
LGBTQ+ community members, HIV/AIDS survivors, and advocates in the Bay Area and beyond are feeling the impacts of living through another pandemic. In some ways, the COVID-19 pandemic is different from the early days of the HIV/AIDS crisis, but in others it feels eerily familiar—and deeply uncomfortable.
“One thing that feels similar to COVID, at least potentially, is that during the HIV crisis there were some lives that didn’t matter, because in the early days the people getting it were what were often called the ‘Four H’s’—homosexuals, Haitians, heroin addicts, and hemophiliacs—so no one paid attention,” said public health expert Anne Donnelly, who has worked in HIV/AIDS advocacy for decades after losing many of her closest friends to the virus.
“We were more than ignored. [President Ronald] Reagan wouldn’t even say HIV. For years and years, he wouldn’t even mention it. It took him all that time just to say it, and meanwhile people were falling ill and dying…and now it’s obvious that everyone in America is disposable except for maybe 400 families at the top who run the country, ” said Fred Andres, a nurse from Richmond, California, who, along with his husband Joel, lost many friends and even former boyfriends to HIV.
In both pandemics, many felt national leadership was lacking, leaving more people vulnerable to the viruses’ impacts, especially those who are already marginalized. “We have had terrible responses from our leaders, on the federal level. If we had better leadership, there wouldn’t have been nearly so many deaths, which is exactly what happened with HIV. Reagan was horrible with HIV,” said Vila.
Although anyone is vulnerable to the coronavirus, the death rates for people of color are significantly higher than white individuals, as are death rates for low-income people. The same is true for HIV, which is still an issue in the U.S. Black communities remain the hardest hit by HIV and have had the highest age-adjusted rates of death from the virus throughout the pandemic’s course in the country.
“Before we understood that COVID was just going to amplify the disparities that already exist in our system, I thought maybe it would be different than HIV. But now, it’s so painfully obvious, it’s just happening all over again … 35 years I spent in this work, and we haven’t made a lot of progress,” said Donnelly.
Being diagnosed with HIV came with significant stigma because the disease was associated with sexuality and substance abuse. Although COVID-19 doesn’t have those same implications, there is still often blame placed on the sick, including communities of color who are disproportionately vulnerable due to preexisting conditions, urban living spaces that do not allow for social distancing, and more people working in essential services.
Martina Clark was 28 years old when she was diagnosed with HIV while living in San Francisco’s Castro district. Now she lives in Brooklyn, New York, where she is recovering from COVID-19. The early days of the COVID-19 crisis felt painfully reminiscent.
“I teach writing, and I assigned my students a journal project on the pandemic. Some of them are writing things about how anyone who gets COVID right now deserves it, because they weren’t taking care of themselves. Someone even asked me “How did you get this? How did it happen?’ I felt like saying, ‘All I did was go outside. I took the subway. Everyone has it,’” said Clark.
For those who lived through the worst of the AIDS crisis in San Francisco and throughout the Bay Area, there are triggering reminders of emotional trauma everywhere during the COVID-19 crisis.
“The first week we were in lockdown, there were so many sirens. Living here, you learn the difference between police and ambulance sirens, and these were all ambulances. It was constant, incessant. It brought up a whole lot of feelings about those early days,” Clark said.
But even as the two pandemics echo each other, there are striking differences. During the HIV/AIDS crisis, the community of those infected was, at least originally, small, tightly knit, and deeply supportive. Now, everyone is impacted, but the feeling of community is actually lessened, according to interviewees.
“Honestly, in some ways HIV was easier. The community was smaller, and it was able to cross link and network more easily. Now, everybody is kind of on their own,” said Andres. “During the HIV crisis, we all got together, we could do things in person. Now the community is so diffuse, and sometimes all we have is the internet, Zoom meetings, and things like that.”
“Because this pandemic impacts everyone, there have been more splits in our communities,” said Donnelly.
The HIV crisis launched the largest patient advocacy movement the world had ever seen, and the bonds between survivors were deeply powerful. “We had no treatments. I thought that I was going to die—we all did. That’s why the activism was so strong—we literally had nothing to lose,” explained Clark.
And in the cases where patients did die of HIV, they weren’t alone, which is unfortunately the case for many COVID patients due to the highly contagious nature of the virus.
“We came together to really intimately care for people while they were dying, and we learned a lot about bringing people through that transition to the other side. We can’t do that now, obviously,” said Donnelly.
What’s true in both pandemics, however, is the importance of asking for help, providing care and support, and being understanding. “The biggest lesson I learned from having HIV, and now living through COVID, is the importance of letting other people help you,” said Clark. “For a long time, I thought HIV was my fault, and I wouldn’t let anyone help me with it—and I did that this time too a little bit, I kept saying I was fine. But you know what, I wasn’t fine, I needed someone to get me some groceries. So I allowed someone to help, and that was so comforting.”
