COVID-19 reignites dark memories for those who survived the AIDS epidemic
Twice a week, Brad Batch goes on a walk with some friends in Raleigh. The Wednesday and Sunday outings are about more than just getting some fresh air. They’re an important and communal part of his week — a chance to get out of the house, have a laugh, catch up with people over coffee.
But last month Batch, who is 67, told the group he wasn’t going anymore — at least until the COVID-19 pandemic was over.
He thought someone might say he was silly, overly cautious. Restaurants and stores hadn’t yet closed. There was no statewide stay-at-home order. College students were forging ahead with spring break beach vacations and people were taking advantage of suddenly rock-bottom airfare to do some impromptu traveling.
“No one laughed. They said, ‘Yeah, you’re right. I get it.’” Batch said. “Everyone was dead serious.”
These were Batch’s friends from the LGBT center. Like many gay men his age, they also lived through the HIV/AIDS epidemic of the 1980s and ’90s.
For many survivors, for the doctors who fought AIDS in its earliest days and those now living with it, COVID-19 brings back memories and traumas. It is a tragic reminder of the lessons the nation failed to learn in the last 40 years.
Now, in the daily headlines, newscasts and online conversations, many veterans of that epidemic say they see disturbing parallels to one of the darkest periods in their lives.
A dismissive, partisan response from Washington.
It’s something they’d hoped they’d never relive.
But some feel uniquely prepared.
“At some point during the AIDS crisis this switch just happened,” Batch said. “You felt like, you’ve got to deal with this. You’re going to lose people. You’re going to bury people. But you are going to be smart, you’re going to do what you can the best you can and you are going to get through it.”
A dark echo
Batch, who is retired, lives with his husband, Paul, in Garner. Batch is HIV-positive, but modern medication has made the disease chronic, with virtually no impact on his health or immunity. Many of his generation were not so fortunate.
Batch’s college boyfriend, Richard, died of AIDS in the early ’80s — the first person he knew taken down by a disease so new and mysterious it didn’t even have a proper name.
“They didn’t even know enough to warn you then,” Batch said. “We didn’t know anything.”
Throughout the ’80s and ’90s he lost friends who had become like family to him, lived with uncertainty and grief as the rest of America — slowly, over more than a decade — came to realize the disease was not a curse on the LGBTQ community but everyone’s problem.
The timeline on that realization has been much shorter for COVID-19. But watching as some Americans still resist social distancing practices or continue to compare the disease to the common cold or seasonal flu has been frustrating.
“A lot of people out there are just in denial, total denial,” Batch said.
He’s seen it before.
Batch watched last month as young people complained about the closing of beaches during spring break. At the same time, the older people in his parents’ Florida retirement community were also balking at the closing of their swimming pools.
To him, it seemed like a dark echo of the early ’80s.
“There were a lot of people in the ’80s who were doing crazy stuff,” Batch said. “Either because they thought AIDS was a hoax, because they thought they were invincible or they thought they were already dead. I don’t know exactly how the psychology worked. But you see that same denial now.”
Barry Yeoman, a veteran journalist based in Durham, has been similarly galled by how dismissive many Americans have been of the disease — and how President Donald Trump’s administration has led that charge.
In 1982 Yeoman was a young gay man recently graduated from New York University. The city’s gay community was coming to grips with the disease, even if the rest of the country was not. In September of that year, the Center for Disease Control and Prevention began using the term Acquired Immune Deficiency Syndrome (AIDS), abandoning the earlier Gay-Related-Immune Deficiency (GRID) as both inaccurate and needlessly stigmatizing.
It would be three more years before President Ronald Reagan would speak publicly about AIDS. By then more than 16,000 Americans had been diagnosed with the quickly spreading disease, which killed about 51% of diagnosed adults and 59% of children.
As the COVID-19 pandemic went global, scientists from the World Health Organization to the CDC have warned about the seriousness of the disease and avoided using stigmatizing language to describe it. President Trump, by contrast, repeatedly compared the disease to much less deadly seasonal flu. He has also insisted on calling it “The Chinese Virus” even as the FBI has reported an upsurge in hate crimes against Asian Americans due to people associating them with the disease.
“The minimization and vilification out of the White House has such clear parallels [to the AIDS epidemic] right now,” Yeoman said. “Every time I hear the president either minimize the crisis or draw lines between himself and people he perceives as his enemies, like Democratic governors, I feel thrown back into the early 1980s. I feel like we’re in this existential fight for survival. And we have a political leadership that is both minimizing the problem and politicizing it.”
Dr. David Margolis, director of the UNC HIV Cure Center, said he has also been disturbed by the search for a scapegoat as the COVID-19 pandemic unfolds.
“I have several Asian and Asian American friends who have been yelled at, spit on and things like that,” Margolis said.
Earlier in his career, Margolis treated AIDS patients at the height of the epidemic. He attended a lot of funerals. The frustration of not being able to save patients in the disease’s early days was compounded by seeing the way gay patients were stigmatized.
“With HIV there was a lot of ‘the other’ — they get this because they deserve it or whatever,” Margolis said. “COVID-19 is different. This infectious disease is in the air. Everybody breathes. So in that way it’s much more threatening across all of society and that may be easier to understand.”
The scientific community understood HIV/AIDS was a danger to all people earlier than the general public, Margolis said, and it took much longer for the common understanding of it to change.
That is not an accident, said Kendra Johnson, executive director of LGBTQ advocacy group Equality NC.
“Both in the AIDS crisis and with COVID-19 we have seen instances where the White House stokes these fears about an individual group rather than treating a disease like a disease and showing leadership to resolve the problem,” Johnson said.
“This is what this president does consistently,” Johnson said. “He ‘others’ groups of people who are his constituents, who he should be representing. To me it’s a hallmark of incompetence at the highest levels of our government, unfortunately. You want to extract yourself from the responsibility, so you make it about another group of people who you say caused it.”
Science and stigma
Dr. Cameron Wolfe, an infectious disease specialist at Duke University Hospital, has temporarily closed his HIV practice so that he can deal full-time with COVID-19.
But his patients will be fine, he said — most modern HIV patients are on a medication regimen that they can maintain themselves and keep their their T-cell count — a measure of white blood cells that fight disease — in a healthy range.
That wasn’t always the case. In the early years of the HIV/AIDS epidemic, people turned to a number of untested and potentially dangerous drugs out of desperation. Some did nothing. Some did harm.
“That is absolutely happening again right now,” Wolfe said.
With no well-studied or approved treatment for COVID-19, a number of drugs have been promoted as potential treatments or cures. The most prominent are hydroxychloroquine and chloroquine, anti-malaria drugs that haven’t been proven to be effective against COVID-19. Some doctors have reported patients being harmed by the drugs and Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Disease, has warned against considering the drugs a treatment for the disease.
The president has, in the face of those warnings, aggressively promoted the drugs.
“There’s a long list of drugs that have theoretical activity against coronavirus because frankly we don’t have anything that’s approved,” Wolfe said. “One thing that is quite clear is that everyone wants to reach for some kind of treatment. To be honest from the president on down, we’re all bleating about the latest hope. There’s nothing well-studied.”
Duke’s official position is that none of these treatments are better than doing nothing, Cameron said — and some have well understood toxicities. There is tension between wanting to better understand treatments and wanting to help the patient in front of you in a crisis, he said.
“There’s a real slippery slope though, to just experimenting on people,” Cameron said.
Another troubling medical intersection between the HIV/AIDS epidemic and COVID-19: the already poor general health of many LGBTQ people, a legacy of historic discrimination by health care providers and alienation in society. The resulting lack of screening, preventative care and lack of access to health care — both physical and mental — has serious consequences.
Medical experts and LGBTQ advocates point to higher rates of smoking, drinking and drug use among LGBTQ people, which can lead to health problems that put them at greater risk for COVID-19.
Studies show tobacco use among LGBTQ people is 50% higher than the general population — a particular danger during a pandemic of respiratory illness.
“Our smoking rates alone make us extremely vulnerable and our access to care barriers only make a bad situation worse.” wrote Dr. Scout, deputy director for the National LGBT Cancer Network, in an open letter on the issue last month.
The fraught relationship between the LGBTQ and medical communities predates the AIDS crisis, said Jennifer Ruppe, executive director of the Guilford Green Foundation.
“Homosexuality was classified as a mental illness until the late 1970s,” Ruppe said. “Then there was the treatment that queer people, especially gay men, got during the AIDS epidemic. Then there’s the treatment many queer people today, especially transgender people, are still experiencing from doctors. There’s a hesitancy to go to a primary care doctor or even to go to the emergency room.”
Equality NC has works hard to connect LGBTQ people with medical resources, Johnson said, but the reality of health disparities in the queer community is a constant concern.
“The reality is that for anyone who is LGBTQ, particularly in the transgender, gender non-conforming and non-binary community, when they walk into a health care setting currently, they may not get the quality of health care they need simply because of who they are and the prejudice they face,” Johnson said. “If you’re rejected by your family, rejected by society and rejected when you try to get life-giving care…where can you go?”
“You put that on top of a pandemic and it’s devastating,” Johnson said. “It’s keeping me up at night, the impact this is going to have on the people who lack access to health care and are going to be the most impacted by pandemics. The hardest hit are always going to be the blackest, brownest, poorest LGBTQ people.”
“In that crucible we learned our strengths”
For survivors of the HIV/AIDS epidemic, the current pandemic has not just stirred trauma. Some have rediscovered wells of strength and resilience they say they first found in themselves decades ago, at the lowest points of their lives.
“For me, the peak of the epidemic was ’88 through ’93,” Yeoman said. “That’s when I was losing friends.”
By then he was living in Durham, writing for the Independent Weekly.
“There were long periods of time when life was normal but then there were these stretches when friends would get sick, then very sick,” Yeoman said. “There were periods of weeks and months where I would make hospital visits in the middle of every work day. I spent a lot of time at hospital beds in those years and went to a lot of funerals.”
It was something people in their 20s, 30s and 40s don’t often have to deal with, Yeoman said — the constant loss of loved ones, the reminder of their own mortality and that of everyone they loved.
“But in that crucible, we learned our strengths,” Yeoman said. “ Some of us were good at bedside visits. Some of us were good at dealing with the parents. Some of us were good at scheduling care. Some were good at interacting with the doctors. And some of us were good at supporting the inner-circle.”
They are lessons and skills on which Yeoman said he’s now drawing again. He’s checking in with friends and neighbors during the current pandemic, making sure everyone is healthy and managing the stress and anxiety as best they can. He’s trying to concentrate on what needs to be done now rather than the whole of the crisis.
“Most of the time I feel really strong,” Yeoman said. “I feel like maybe I do have some coping skills that my peers don’t have. And other times I feel like I’m living in a flashback.”
For Batch that flashback feeling has been galvanizing. He remembers the struggles and the pain of the AIDS crisis — but also the gay community’s reaction. They educated themselves in the face of misinformation, relied on each other when failed by their government and steeled themselves for the battle at hand.
“As a gay man in the ’80s, at some point, you realized panic was not beneficial,” he said. “You would go home and cry after you lost someone … but ultimately that wasn’t the thing that helped them or helped anybody.”
Calling on the survival instincts developed during the HIV/AIDS epidemic, Batch said he was quick to adjust his attitude during the current pandemic.
“I think very quickly I got to a place of ‘I don’t want to get it, I don’t want to spread it,’ he said. “But this is happening and we’re going to have to do the best with what we’ve got. We don’t have masks? We’ll make some damn masks.”
“I hope we’ve learned some lessons from the last time,” Batch said. “I hope the whole world has.”
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