World AIDS Day: Reflecting on two pandemics faced by the Black & LGBTQ communities

‘It’s kind of terrifying how little has changed’

By Hannah Critchfield | Originally published by North Carolina Health News

This June marked the 50th anniversary of the first Pride parade, which arose in protest against police brutality and for the rights of LGBTQ people. December 1 is World AIDS Day. Health equity has always been an indispensable part of that struggle.

Brad Batch was at a party in Garner, N.C., when he first heard about the virus.

The 30-year-old had recently moved back home after a few years in New Orleans.

A friend approached him and asked a strange question about his old college boyfriend, who was now living in New York.

“Did you hear Richard has the gay flu?”

This June marked the 50th anniversary of the first Pride parade, which arose in protest against police brutality and for the rights of LGBTQ people. Health equity has always been an indispensable part of that struggle.

Richard would be one of many million people to die in the global epidemic caused by human immunodeficiency virus, also known as HIV/AIDS. Batch, who is now 68, would eventually test positive for the virus himself.

But Pride looks different in 2020. It’s a year where yet another pandemic has ravaged the LGBTQ community and a year where many of the people disproportionately impacted by it have already taken to the streets to protest for their lives.

Many experts say things are not that different from the last time they faced a pandemic.

“It’s kind of terrifying how little has changed actually,” said Derrick Matthews, who researches health inequities experienced by LGBTQ people, particularly around HIV prevention and treatment for Black men, at the Gillings School of Global Public Health at UNC Chapel Hill.

Several comparisons have been made between the rise of the HIV pandemic in the United States in the 1980s and 90s and the current COVID-19 pandemic. Both diseases have ravaged vulnerable communities, particularly people of color. Both have been exacerbated by public health responses from government leaders and civilians, and both are still ongoing.

NC Health News spoke to a survivor of the HIV pandemic, a former CDC staffer who worked at the agency when the outbreak first hit, a public health researcher, and a local LGBTQ advocate. They reflected on how their understanding of the United States’ public health response to the HIV pandemic shapes their perspective of this present moment for members of the Black and LGBTQ community.

Pandemics are political

Gene Matthews was in the room when a director at the Center for Disease Control and Prevention first reported the strange incidence of the then-rare pneumocystis pneumonia in five gay men in Los Angeles in 1981.

“I remember it like yesterday,” said Matthews. “It was right around this time of year.”

Matthews, now a senior investigator at the North Carolina Institute for Public Health, was the chief legal officer at the organization at the time. He said he’d grown up in the age of the “antibiotic bubble” in the United States, following the invention of the polio vaccine.

“There wasn’t anything that science, and hence in the private sector of pharmaceuticals, couldn’t cure or protect us from,” recalled Matthews. “And all of a sudden, Mother Nature robbed us of that illusion, rather dramatically.”

Matthews would continue with the agency throughout much of what would become known as the HIV pandemic.

“Here’s a disease that’s spreading, we’re not quite sure how it’s spreading, you die a horrible death, there is no treatment, there is no cure. There is no vaccine. Does that sound familiar?”

From his experience, Matthews said pandemics are always political.

“Public health messages become weaponized in a highly polarized political environment,” said Matthews. “HIV was like catnip to politicians. It was called a ‘gay disease’ — there was pressure by Republicans to try to spin AIDS in a way that helped the 1984 re-election.”

The administration of Ronald Reagan has been widely criticized for its response to the HIV/AIDS pandemic. Reagan himself did not publicly acknowledge HIV until 1985, when over 12,000 citizens had already died of the virus. The federal government ignored, and sometimes laughed at, the HIV pandemic, said Matthews, largely because of who was first experiencing it. The president’s base had little interest in fighting the virus they believed they could not contract and were suspicious of government spending that interfered with the free market economy.

“Sound familiar?” Matthews again added. “COVID doesn’t have the same stigma, but it is at least as politicized now.”

Cultural response

All of the people NCHN spoke to talked about seeing the same “collective willful ignorance,” as Matthews described it, to the novel coronavirus pandemic.

“The comparisons I’ve noticed are less the disease itself and more about our kind of social-cultural response to it,” said Derrick Matthews of UNC, who shares no relation to Gene Matthews. “I think that we see a lot of parallels with the kind of very poorly coordinated response.”

Though the country’s initial response to COVID-19 was much faster than it was to HIV/AIDS, eventually leading to a nationwide shutdown, the United States remains disproportionately represented in the global pandemic death count — accounting for 5 percent of the world’s population but 25 percent of total COVID-19 deaths — due, in part, to the delayed response of the federal government to early warnings about the threat of the virus’s spread.

Even today, as COVID-19 cases spike in 22 states, the pushes to reopen continues. President Donald Trump is considering ending the national coronavirus emergency and depending on political affiliation, citizens may disagree about the severity — or in some cases, existence — of the disease at all.

“I think people have a tendency to go into denial mode. You can see it right now in Raleigh,” said Batch, who continues to live in the area. “There’s crowds of 20-and-30-somethings where a lot of the restaurants and bars are, and they’re not wearing masks and they’re not doing social distancing.

“They’re not worried about it, because they’re young — they think it can’t happen to them. A similar thing happened with HIV, where people said, ‘Well, I’m not gay, so I’m not going to get it,’” he said. “Of course, there were some unpleasant surprises about that.”

Pandemics are not a ‘great equalizer’

Public health emergencies always ask us to confront our nation’s ongoing relationship with racism and bigotry, experts said.

“The kind of hatred and bigotry that’s surrounded a lot of conversations about the virus is just pure racism,” said Derrick Matthews. “You know, it seems like forever ago, but at the beginning of 2020 this was the ‘Chinese virus,’ or the ‘Wuhan virus.’

“That naming of it really made me think of HIV because you know the early name for HIV — even the CDC had called it the ‘4H Disease.’”

Before the agency had an official name for HIV/AIDS syndrome, the public often referred to the virus as the ‘4H Disease’ — the primary risk groups were Haitians, hemophiliacs, heroin users, and homosexuals.

“It was very pejorative,” said Gene Matthews. “I don’t like to repeat it. Because there was a certain racial undertone, particularly when talking about homosexuals and heroin users, of ‘They’re getting what they deserve.’

“But just like now, the virus attacks those with less health care resources.”

The novel coronavirus has disproportionately impacted people of color in the United States. Black people account for over 30 percent of all hospitalizations from the virus nationally, despite making up just 18 percent of the population. In North Carolina, with currently available racial data, 34 percent of COVID-19 deaths are Black people, who make up just 22 percent of the state population.

“There’s very much a segregation of who’s becoming sick and dying,” said Derrick Matthews.

And though many of the historical narratives around HIV have predominately featured white gay men, Derrick Matthews said HIV was no different.

“The severity of that inequity was so intense, that I think part of the reason the faces of Black gay man and Black trans folks are so erased from that retelling is because, well, they’re gone,” he said. “As devastating as it was to gay men and queer men broadly, my friends and colleagues and I talk about this: We didn’t have an entire generation of people who could mentor us on what it would mean to walk through the world in this country as a gay Black man.”

The first known person to die of HIV may have actually been Robert Rayford, a 16-year-old Black boy from St. Louis, in 1969. (His strain of the virus slightly differed from the one that led to the HIV pandemic in the 80s and continues to infect people today.)

“HIV definitely affected the African American community, and still affects African Americans, much more than the non-Hispanic white community,” recalled Batch, who himself is white. “Gay Black men and women had a double whammy, but they were not only oppressed by society for being gay.”

Evolving ideas around intersectionality have paved the way for broader understanding of how different identities interact — a person can be both gay and a person of color, for example.

“In the 80s and early 90s, there were kind of the ‘gay concerns’ around HIV and there were kind of ‘Black concerns’ around HIV,” said Derrick Matthews. “When in fact, people who had identities rooted in both their Black race and their gay sexual orientation were the ones who were doing the work. Yet they were the very ones who were being ignored.”

Pandemics spur political action

The HIV crisis, and the federal government’s response to it, spurred LGBTQ people to protest for better health conditions. The pandemic politicized many members of the LGBTQ community, and the work the AIDS Coalition to Unleash Power (ACT UP) and other queer organizers led to changes in health policy such as faster and more widespread availability of experimental treatment drugs.

J. Clapp, executive director of the LGBTQ Center of Durham, points out that Black LGBTQ people have continued that work. Two of the three founders of the Black Lives Matter movement, Alicia Garza and Patrisse Cullors, identify as queer. From the beginning, organizers have stated defending LGBTQ life was a key part of the movement.

He believes that the current COVID-19 pandemic may have further politicized members of the Black LGBTQ community — contributing to more widespread participation in the recent spate of protests following the deaths of George Floyd, Breonna Taylor, Tony McDade and other people of color killed at the hands of law enforcement.

“Black people are just tired,” said Clapp. “They were at Stonewall, they were there to fight Reagan during the HIV epidemic in the 80s and 90s. And here we are again, fighting for Black Lives Matter, in the middle of COVID.”

The pandemic has put on display how intimately racism is tied to health. It’s also given some LGBTQ people unprecedented space to engage in activism.

“I don’t know that this protest would be so large and prolonged without COVID,” said Clapp, noting that many LGBTQ people, particularly those of color, were disproportionately impacted by gig economy and restaurant closures, creating opportunity and added incentive for them to participate in protests. “Because racism is the actual public health crisis.”

Derrick Matthews echoed these sentiments.

“COVID-19 and police violence are essentially two sides of the same epidemic of racism,” he said. “The criminally negligent response to COVID is certainly a kind of more covert form of racism, but I think this is the critical piece people are not getting: These protesters recognize fully the threat of COVID, because it’s affecting their communities more. And they’re outside, marching, anyway.

“It’s a completely logical, and I think on-point assessment that racism and all of its poison fruit are the real threat to people’s health and safety,” he added. “COVID is just another manifestation of it.”

The pandemics are ongoing, while access and treatment reflect health disparities

Both pandemics are still ongoing.

“A lot of people think that because PrEP is a reality, the HIV pandemic is over,” said Clapp, referring to the treatment-as-prevention drug regimen that can arrest the spread of HIV. “But there are still new transmissions. There are still people who are living with untreated HIV. We’re on a good path, but we still continue to struggle to get PrEP and other resources into the hands of our most marginalized, which typically include people of color and trans people of color.”

COVID-19 may even worsen the ongoing HIV crisis.

“I’m worried we’re going to see a lot of people fall out of HIV care and really start to undo the progress that we’ve made,” said Derrick Matthews. “So much of health insurance is tied to employment, and we know that people of color were among the ones to lose their jobs the most.

“Many queer and trans people were in the service and gig economies. It puts these groups in even more jeopardy.”

As scientists race for a vaccine for COVID-19, some members of the LGBTQ community remain similarly concerned about who will have access to it.

“I can’t help but wonder if, just like HIV, we’ll come up with this really great solution that’s really effective, but it’s going to get into the hands of people that need it the most, less,” said Derrick Matthews. “If it ever gets there at all.

“I hope this really does get people thinking more broadly about what it means to live in a country that does not prioritize the health of its citizens? And I think we’re finding out.”

“If a vaccine occurs, it’s going to be difficult getting it out. And there’s gonna have to be a bit of sorting about who gets it first,” said Batch. “I hope it’s done on a vulnerability basis, and not some ‘dog whistle’ criteria — where you don’t come out and say, ‘Well, we’re not gonna vaccinate you because you’re Black or brown or Spanish or undocumented, but we’re gonna do some other criteria that basically means there’s only like 2 percent of you that can get it.’”

Pandemics require behavior change

Changing human behavior in the face of a pandemic is difficult.

“It is not that easy to inspire or require the harm reduction behaviors that are appropriate to the new normal,” said Dr. Myron Cohen, director of the Institute for Global Health and Infectious Diseases at UNC, at a June 24 health briefing on COVID-19. “We’re being asked to do a thing inconsistent with the general behavior of our species.

“We have had the same problems with HIV in inspiring risk reduction behavior. We know how the virus is transmitted, and as we’ve known how it’s transmitted we’ve had to inspire lots of behavior changes, which when used, are very effective. But they’re hard to sustain.”

And with COVID-19, prevention behaviors depend on everyone, not just those at high risk for suffering the worst outcomes of the virus.

Gene Matthews, the former CDC official, said the HIV pandemic had to move out of marginalized communities for the majority of the public to take notice.

“We got to a point where the majority of people in the country knew somebody with AIDS,” said Matthews. “Of course, AIDS was a death sentence.

“I’m not quite sure we’re there yet, where everybody in this country knows somebody personally that died of COVID. But believe me, we surely will be, unless some miracle [behavior change] occurs.”

Derrick Matthews, of UNC, said he’s often wondered if the public would be more concerned if “the face of COVID-19” looked different. Yet at the same time, he, like the other Matthews, is worried there may be a bigger cultural problem.

“There are literally people who think it’s made up,” said Matthews. “Literally. I hope we don’t have to have to get to the point where basically everyone needs to know someone who died of COVID. But it feels like that’s where we’re heading. And that’s … strange.”

But Brad Batch said he’s hopeful about individuals who are changing their behavior.

“I’m 68 years old. I’ve looked back, and I’ve seen this kind of stuff before,” said Batch, who said he lost count of the number of people he knew who died of HIV. “The thing is, you need to have hope. How do you respond to pandemics? You roll up your sleeves and get down to work.

“With HIV, we marched, we did ACT UP, we handed out condoms on the street corners. They say you need to wear a mask, and you have a mask shortage? Well, you make some damn masks. And that’s how you get through this. I’m confident we’ll get through this.”

— Originally published June 20, 2020, by North Carolina Health News