Survivors see parallels between HIV/AIDS epidemic and COVID-19 pandemic
Healthcare workers caught off guard and fearing for their safety. Patients, separated from their loved ones, left to recover or die alone while intubated in hospital rooms that were plain and sterile, absent of anything that recalls the comforts of home.
The spread of COVID-19, the infectious disease caused by the novel coronavirus, has ushered in a season of isolation, fear and uncertainty that many young generations are experiencing for the first time.
The early days of the COVID-19 pandemic were filled with uncertainty and fear, as hospitals began cutting off visitors, the NCAA cancelled the men’s and women’s March Madness basketball tournament, concerts were postponed and television shows ceased production.
Few expected the illness to reach pandemic scale, especially as President Donald Trump spent several weeks downplaying the seriousness of the virus and continued to attend large campaign rallies despite warnings from within his administration. And he even engaged in racist, xenophobic scapegoating against Asians by calling COVID-19 the “Chinese virus.”
Many of these situations harken back to what the LGBTQ community and many others experienced when the HIV/AIDS epidemic first entered public consciousness in the early 1980s. At the time, it was dismissed as a “gay disease” until people knew how it spread and realized that the illness wasn’t confined to one region or demographic. And the tens of thousands of AIDS-related deaths were a relative footnote at The New York Times, compared to its historic May 24 front page honoring 1,000 coronavirus deaths.
But for many, HIV/AIDS isn’t a figment of the past. Just like COVID-19, HIV/AIDS disproportionately impacts Black communities. Coleman Goode, manager of community organizing at the AIDS Foundation of Chicago, has been living with HIV since 2006, and recently recovered from COVID-19.
“Because I was so young with the AIDS epidemic, I never had that feeling [of dread], but [with COVID-19] it felt like the world is changing and this is different and it kind of scared me a little bit,” Goode said, noting that COVID-19 felt distant because initial reports about its spread focused on European countries, older populations and people on cruise ships contracting the virus. Some remarks on the virus not being a Black person’s disease “because we wash our hands,” he said, also began spreading on social media.
“But the day the NBA closed their season, and everything began shutting down, it was, like, ‘This is real,’” Goode explained. “And it felt very sudden and different to me.”
Goode, now 39, was about 10 years old when he first became aware of the HIV/AIDS epidemic in the early 1990s. By that time, celebrities became more outspoken about HIV/AIDS awareness, and NBA and Los Angeles Lakers basketball legend Magic Johnson held a press conference announcing his positive diagnosis, all while the deaths persisted with limited treatment options available. Eric Wright, famously known as West Coast rapper Eazy-E, died from AIDS complications in 1995 after going into the hospital a month earlier with a violent cough and being diagnosed with the disease.
Goode’s family was concerned about a relative who was in and out of treatment for using IV drugs, with fears that he would contract the virus. He didn’t know much else about the virus beyond that.
A few years later, Goode learned more about the virus through health books in high school and by watching MTV’s “The Real World” season three, which had Pedro Zamora, an HIV-positive gay man, in its cast. Zamora, who died in 1994 at the age of 22, is noted as one of the first openly gay, HIV-positive people depicted in mainstream media.
Still, for Goode, the virus felt like something that just happened to people. It didn’t have anything to do with him, he said.
Then came a false-positive HIV test around the year 2000 while giving blood plasma in college. It deeply affected his mental health and, for a few years, he did anything he could to avoid contracting HIV — from no longer hooking up with other men to avoiding bars and social settings entirely.
“I began associating gay with HIV and it became in my mind, that no matter what, I’m going to become HIV positive,” said Goode, who later tested positive for HIV in 2006. “I kept the hypersensitivity to myself because I felt shame around it.”
Just as his world view changed on HIV/AIDS with his initial false-positive result, Goode’s brush with COVID-19 — and the sudden shutdown of business-as-usual in March — turned the pandemic into an immediate issue virtually overnight. Stigma against an infectious illness took hold yet again.
When his office notified people on March 13 that they’d be working from home rather than at the office, Goode said COVID-19 became even harder to ignore because the rapid changes and the resulting statewide shutdown seemed to happen overnight. But at first, to him, it didn’t seem as though Black people would be at risk for the illness.
“It wasn’t real in our community yet because people weren’t talking about it, but they were probably getting sick and not knowing it,” Goode said.
Then Goode became quite unsettled when he started to feel ill and his apartment building’s management team sent notifications to residents attesting that no one in the building, to their knowledge, had tested positive for COVID-19.
“Maybe it is because I was getting sick and I had fear around me about what would happen if people found out I’m sick. It’s like having HIV in the 1980s and fearing having to let your landlord know — and a fear where people didn’t want to come get the bodies of the dead,” Goode explained. “There was fear of being shamed. I’m already alone and sheltered in place and having to keep myself away from people.”
Numerous reports have outlined that Black Americans in major urban centers across the U.S. represent a large share of COVID-19 cases and deaths compared to their share of the population. There’s a parallel with HIV statistics, too. According to the Kaiser Family Foundation and the Centers for Disease Control and Prevention (CDC), Black Americans make up 12% of the U.S. population but accounted for a much larger share of HIV diagnoses in 2018 (43%) and people estimated to be living with HIV (42%).
Goode was an infant during the onset of the HIV epidemic. Years before the illness had its formal name, Ron Baumhover, 69, saw the human toll first hand after relocating from Chicago to San Francisco in the early 1980s, a city that would become one of the hardest hit by HIV. He worked in healthcare and hospitals at the time and has since retired.
“When the disease first presented itself in the ICU, there was enormous concern about transmission. In the early days, we didn’t know how it passed along. We didn’t know if it was airborne, or touch,” said Baumhover, who was, at the time, the only gay staff member at a hospital’s intensive care unit located in the Castro — San Francisco’s most prominent gay neighborhood.
Meanwhile, several of his friends back in Chicago were diagnosed with AIDS and eventually passed away from complications. Baumhover eventually tested positive, too, in 1988. But at the time, there was little urgency on finding a cure for the illness, let alone any widely available treatment for those who were suffering.
Some healthcare workers were afraid to interact with patients dying from AIDS complications. Families, particularly those of gay and bisexual men, disowned and ejected their ill relatives from their homes, leaving them to find whatever support was available or to otherwise die alone in a hospital. In many cases, but most certainly not all, other LGBTQ+ community members, especially lesbians, filled the gap to take care of their own.
President Ronald Reagan refused to acknowledge the thousands of people who were sick and dying, let alone ever utter the words AIDS until his Hollywood friend, actor Rock Hudson, revealed he had the disease in July 1985. In addition, the federal government — under the leadership of both Reagan and George H.W. Bush — didn’t fund HIV/AIDS research or treatment in the 1980s.
It wasn’t until the Ryan White Act passed in 1990 that more funding was directed to research, healthcare services, treatment and support of community organizations addressing HIV/AIDS. White was diagnosed with AIDS following a blood transfusion in December 1984. He fought AIDS-related discrimination in his Indiana community after his school refused to admit him after his diagnosis.
Even then, Baumhover said, the delayed action only came after a community had already endured long suffering — in some ways similar to how Trump sat on his hands and waited for COVID-19 to escalate to pandemic levels before taking matters seriously.
“With the AIDS epidemic, it was localized, so people were able to not care and say it’s not my problem, including the government. Well, [the coronavirus] isn’t localized, and if you say you don’t care and you’re not handling it, you’re putting your own life in peril, and that’s making a difference,” Baumhover said.
At the time of this interview, he was managing a home care situation for a friend stricken with COVID-19.
“It was wrong for people not to care when the AIDS epidemic hit. They could say it’s not my problem and they could make all the moral judgments about it because it didn’t affect them,” Baumhover explained in an interview with The TRiiBE weeks before WBEZ reported that Black Chicagoans were disproportionately dying from COVID-19. “But in this case, COVID-19 is hitting everybody. It isn’t differentiating in racial, gender or sexual identifications. It’s attacking humans indiscriminately. Maybe people with underlying conditions or elderly folks are susceptible, but people are dying. I can’t comprehend any logic behind that idiot [Trump] not giving this the attention it deserves.”
The notion that HIV/AIDS was a “gay person’s disease” made it easy for various religious leaders, and even most average people, to come to the conclusion that the illness was God’s punishment against the community, despite that argument’s lack of theological grounding. The anti-LGBT moralizing that made it difficult to properly educate on HIV may be replicating in a different way now, in the case of the coronavirus.
Channyn Lynne Parker, 41, remembers hearing at home as a child that HIV/AIDS was a disease that “killed sissies.” She couldn’t articulate as a five-year-old the feeling of being different, of being gay or transgender, but went to bed for many years through grammar school believing she had AIDS because of her LGBTQ+ identity, and didn’t know it was sexually transmitted.
As a point of concern, Parker cited false beliefs that pandemics are God’s judgment on individuals based on their actions or based on their personal beliefs, including how that moralizing has targeted people who are gay or perceived to be gay. But she also noted how it extends to people who aren’t able to shelter in place due to homelessness or abusive home environments, as well as the language of stigma that’s begun to emerge.
“When we think about the high clearance rate of COVID-19, there are individuals still saying ‘Well, how did you get it? You keep a clean house? You’re not around people? You wash your hands, you’re clean?’ We’re going back to that language of ‘clean’ and ‘dirty,’ in the way we did with individuals who live with substance abuse or with HIV,” Parker said.
Parker is the director for strategic partnerships at Howard Brown Health, which primarily serves uninsured and underinsured members of the LGBTQ community. They’ve offered clinical resources, counseling and youth services for decades, and have seen the community through various health and economic crises, and have most recently held strong despite threats and attacks on LGBTQ protections from the Trump administration.
“So you end up perpetuating the same things we did with the HIV/AIDS crisis,” Parker explained. “We are projecting our own morality onto this virus and individuals who contract it. We’re shaming the individuals who don’t have the privilege to shelter in place.”
There’s still hope for knowledge to be shared amongst Black and LGBTQ people that will help raise awareness for testing, treatment and prevention during the time of the COVID-19 pandemic. For example, Parker noted that Howard Brown is still providing drop-in services for youth, and they’re asking the public to donate basic supplies for the populations they serve.
The AIDS Foundation of Chicago, Goode said, is also working to ensure community members who are worried about losing housing will have support with utilities and rent. In addition, they’re organizing virtual advocacy efforts to encourage Illinois legislators to dedicate state funding to assist with emergency needs for people living with and vulnerable to HIV, along with additional funding support for Black-led and Latinx-led HIV organizations in Illinois during the outset of COVID-19
“It’s changing the way we interact with our activists, but also how we hold community meetings and getting information out when you can’t hold a meeting and talk face-to-face,” Goode said. “The nation is forced to look at how Black people have been disinvested in.”