How The AIDS Crisis Prepared Us For COVID — And Shaped Our Response

One year into the COVID-19 pandemic, it’s become clear that we owe many of our successes in fighting the virus to the HIV/AIDS crisis — and that our failures could have been avoided if we’d acted on the parallels.
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Anthony Gerace

 

One year ago, when a new and little-understood virus began spreading in the United States, straining our hospital system and causing mass death, there was at least one group of people who knew what to expect: HIV/AIDS experts. They had seen this exact situation before.

“I would say it was really early on that I recognized some of the parallels,” Cecilia Chung, a longtime HIV/AIDS advocate, tells them.

Chung took stock of the emerging data in the spring of 2020 while serving on the San Francisco Health Commission: She saw the disproportionate impact of COVID-19 on Black people, a rapidly-rising rate of infection among the Latinx community, and a surge in racist attacks on Asian Americans. That’s when she knew things would unfold just as they did with the HIV epidemic: People of color were going to bear the brunt of a novel illness and the public was going to stigmatize the population they perceived as a “vector” for infection.

“We suspected how it was going to play out when the former president kept calling this the ‘Chinese virus,’” says Chung. “That kind of attack is really intentional, and when it’s sanctioned by the government, I think that really emboldens the public to add fuel to the fire.”

One year later, over half a million Americans are dead, while Black people are dying at almost twice the rate of white people, and anti-Asian violence continues to surge — most horrifically in Atlanta, where a gunman killed eight people last week across three Asian massage spas. The COVID-19 pandemic remains a complex and multi-faceted problem, but our response to it can perhaps be seen most clearly through a single lens: Our successes — like efficient vaccine production and emergency FDA authorizations — have only been able to happen so quickly because of the knowledge we gained and the infrastructure we built during the AIDS crisis.

Without the network of clinical trials created to test HIV vaccines — which were quickly put to use to test COVID-19 vaccines, as the Washington Post reported — our historic efforts to combat the worst pandemic in a century could have come too late to accelerate herd immunity. Moreover, the speed with which vaccines and treatments have been approved under a “compassionate use” framework also has its roots in AIDS-era advocacy, when patients and their loved ones pressed the FDA to expedite its slow-moving, bureaucratic approval processes. But conversely, our failures in the fight against the coronavirus are proof that we didn’t apply the lessons of the AIDS crisis well enough, nor quickly enough.

Daniel Driffin, co-founder of the Atlanta-based nonprofit Thrive SS, which provides services to people living with HIV, believes that COVID-19 would have had a lessened impact had we approached the disease from the onset with the full knowledge of HIV/AIDS policy experts and advocates.

“I don’t think we would have had 500,000-plus people dying or more than 28 million infections,” he says.

Like Chung, Driffin saw much of our nightmare coming. Last March, when dangerous conspiracy theories were spreading that Black people “can’t get COVID,” Driffin realized what was about to happen.

“I thought, ‘Oh my God, we’re about to do this again, and it’s going to travel the exact same road map that HIV ultimately traveled,’” he says.

Misinformation was going to fill the gap of trust between the medical establishment and marginalized groups, just as it did with HIV, especially in the early days of the epidemic when the still-new disease was known as GRID, or “gay-related immune deficiency.” Back then, as sociologist Jacob Heller notes in a recent American Journal of Public Health review of this history, HIV/AIDS conspiracy theories were especially prevalent, ranging from the idea that “women are tricking men into having sex with them so they can give them AIDS” to the notion that HIV was “developed by the Central Intelligence Agency” to kill off African Americans. Understandably, given the harms Black people have faced — and continue to face — in medical settings, those conspiracy theories have proved to be more persistent among African Americans, as Heller observes. That gap has only compounded the larger structural inequities in access to HIV testing, treatment, and care.

So when the pandemic began, Driffin knew to expect a similarly pointed and lethal combination of misinformation and discrimination.

“If America is America,” he remembers posting on Facebook, “Black people and brown people will be disproportionately impacted by something like COVID.”

That proved to be true from the very beginning, as several major American cities failed to equitably distribute tests to people of color.

“Generally speaking,” Driffin observes, “testing and vaccination sites are located in affluent areas,” even though rates of infection and death are highest in the less wealthy and more densely-populated areas where more people of color tend to live.

It didn’t have to be like this, Driffin believes. The Trump administration’s absolute failure to implement a strong and cohesive COVID-19 response — and the shortcomings of several state and local leaders to follow through with their own plans — severely hampered our ability to control the spread of the coronavirus.

“It could have been different with different leadership,” he says.

But still, some HIV/AIDS experts contend that our response to COVID-19 would have changed if we had seen and acted on the parallels between the pandemics more decisively at each stage. Studying the rise in violence against LGBTQ+ people in the early days of the HIV epidemic could have helped us predict and prepare to combat the current rise in anti-Asian attacks. Racial inequalities in testing, treatment, and vaccination could have been addressed more thoroughly and more swiftly.

And, as NYU Langone’s Eric Kutscher argues, our post-lockdown guidelines would have been more realistic about human behavior — and about the need to reduce risk instead of eliminating it altogether.

“In general, from what we know about HIV, human behavior at the start is either, “I’m doing it,’ or ‘I’m not doing it,”” Kutscher, an internal medicine resident, tells them.

At the start of the HIV epidemic, Kutscher recalls, many LGBTQ+ folks “were completely abstaining, particularly around anal sex,” but eventually, as the science of the disease came into focus, experts and advocates shifted toward a “harm reduction” approach. Instead of advising people to eliminate risk altogether, public health officials began talking about safer sexual activities that carried a lower risk of transmission.

Last year, as it became clear to Kutscher that New York City’s lockdown was going to last a lot longer than two weeks, he began advocating for a harm-reduction approach to COVID, which would place less emphasis on never leaving your home and instead encourage people to seek the “consent of our social partners” if we feel we must socialize and follow distancing and masking guidelines when we do.

“Once we started to come over that hump later in the spring, beginning of the summer, I started to realize that we needed something between all or nothing — between complete lockdown or reopening — and that’s when the harm reduction approach really came into perfect focus,” he tells them.

Without encouraging risky behavior, Kutscher contends, health officials could have been more open and direct with people who were either going to see friends anyway or who could not socially distance due to their living situation. We know from the HIV epidemic that such harm reduction approaches work, especially when it comes to intravenous drug use.


“If you’re going to do it anyway, you’re more receptive [to harm reduction] because you don’t feel like you’re rebelling against the system or like you’re a bad person or like you’re doing something taboo,” he explains.

Working on the frontlines, Kutscher says that lockdowns are periodically important to ensure hospitals do not get overwhelmed, but as time goes on, people need to feel like they can still “do things that bring them purpose, meaning, engagement, and satisfaction,” and public officials need to tell them “how to decrease their risk of illness as they do it.” Rather than shame people for violating guidelines, a harm reduction approach aims to build up people’s sense of self-worth and empower them to make safer choices.

But as many of us sat in our houses, forced to watch the world through the window of the internet, the public conversation often felt painfully absolute: Either you were a good person who hadn’t left your house since March or you were a monster with a wanton disregard for human life. Our conversations revolved around what we cannot do, instead of highlighting how COVID might get transmitted while engaging in whatever kind of socializing we had decided to do. Within the LGBTQ+ community, that dynamic came to a head with the GaysOverCovid Instagram account and others, which drew attention to circuit partying and vacationing during the pandemic. Activists like Jason Rosenberg have pointed out that HIV/AIDS should have taught us by now to not use “shame as a public health tool.”

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Instead, a harm reduction approach teaches people about risk in more detail rather than starting from a place of outright prohibition. As Kutscher points out: “Once you understand the basics of transmission, you’re able to figure out what’s high-risk and what’s low-risk yourself. I think that if we had a little more of a conversation about that, then public perception and understanding of actually risky behavior would probably improve.”

If we had talked more about respiratory droplets and aerosol transmission, for example, more people might have intuitively understood why outdoor picnics are safer than indoor dining, or why shorter visits of fewer than 15 minutes with loved ones are safer than long ones, instead of balking at the litany of guidelines before throwing caution to the wind. When the New York City Department of Health released a detailed fact sheet about safe sex during the pandemic as early in March 2020, some on social media had a field day making jokes about rimming, masturbation, and horniness, but by now it’s clear how vital this guidance was. People were — and are — having sex during the pandemic, and too many have been going without clear and direct information about how to do it.

It’s not too late, though, to more fully utilize the knowledge of HIV/AIDS experts as we continue to bring COVID-19 under control.

“Those who have experienced the HIV crisis or who are currently living with HIV or who have been infected with HIV, they’ve learned the lessons from that first wave of that pandemic,” says Chung. “It’s easier to work with us in terms of identifying a strong public health response.”

We have only been able to approve treatments and vaccines so quickly, Chung points out, because of the pressure LGBTQ+ advocates put on federal agencies during the AIDS crisis. In fact, as historian Marie-Amélie George noted in the Washington Post early in the COVID-19 pandemic, several crucial public health innovations, like “parallel track” programs and compassionate use policies — both of which help patients gain access to potentially lifesaving treatments outside of clinical trials — were invented or expanded during the AIDS crisis, at the urging of ACT UP and other LGBTQ+ advocates. The development of emergency use authorization, which has allowed us to distribute vaccines so early in the course of the pandemic, owes a significant debt to this activism as well.

The now-famous Dr. Anthony Fauci was the chief of the National Institute of Allergy and Infectious Diseases back then, too — and he learned from his experiences with the HIV/AIDS community — so experts are encouraged to see him once again take on a stronger role under the Biden administration.

“I can’t imagine anybody who was better prepared to take this on than someone who had led the country through the last huge infectious disease outbreak,” says Kutscher.

Demonstrators for AIDS research funds march up Madison Avenue to protest against President George Bush, New York, New York, July 24, 1990.
We asked four people who lived through the worst of the HIV crisis to talk about what they're feeling as they watch this new pandemic unfold.

Kutscher would like to see more focus on structural interventions for COVID-19 comparable to, say, the distribution of condoms within bathhouses to reduce HIV transmission. For a respiratory illness like COVID-19, that would include countermeasures like improved air filtration, free masks, and on-site testing.

“I’m looking forward to a time when we are building safer environments for us to live in around COVID,” he says.

Driffin believes that, while we push for systemic change, community groups will have to address many of COVID-19’s enduring racial inequities.

“I think nonprofits are beginning to do some of that intersectional work,” says Driffin — and many of those nonprofits desperately need funding.

Soon, we will have several approved vaccines for COVID-19, we will be approaching herd immunity, and the death toll will hopefully be slowing to a crawl. That future wouldn’t be within reach without the knowledge gleaned from the HIV epidemic, and we can only get there with the help of those who brought the last outbreak under control.

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