What can we learn from the fight against HIV in the 80s to use in the era of COVID-19?

Police guard the FDA headquarters in 1988 after ACT UP members stormed the building demanding better access to life-saving drugs.
Police guard the FDA headquarters in 1988 after ACT UP members stormed the building demanding better access to life-saving drugs. Photo: Public domain

Frank Kallmeyer can vividly remember the first time he heard about HIV. A strikingly handsome 23-year-old law student at Arizona State University, he had moved from the cooler climate of Kansas City to the desert a few years earlier. Like many gay men in his generation, escaping the cold, conservative Midwest to somewhere far away was the only way to liberate oneself and fully come out.

One day, one of Kallmeyer’s roommates came back from a trip to New York with the usual hot gossip. But this time, it was accompanied by some dire news.

Related: Anti-LGBTQ policies increase risk of HIV among gay & bi men

“He referred to it as the ‘gay cancer’ and that it killed anyone who got it,” Kallmeyer recalls. “But we didn’t have to worry about it because it was only infecting guys who lived in New York or San Francisco.”

That was in the fall of 1983. Five years later, Kallmeyer would find himself at the frontlines of one of the deadliest disease outbreaks in American – and world – history, and he would ultimately lose the majority of his social circle to an invisible enemy. The culprit: what would come to be known as the Human Immunodeficiency Virus, or HIV.

“Life was hell for the longest time. Every day felt like the apocalypse,” Kallmeyer recalls.

The HIV crisis was indeed apocalyptic for much of the sexually active gay community in the United States. The CDC estimates that since the beginning of what is considered to be an ​ongoing global epidemic in the early 1980s, ​at least half a million people have succumbed to HIV in the United States alone, ​over half of the victims being gay and bisexual men. And despite more education and awareness on HIV, the virus still infects up to 40,000 Americans per year.

Almost four decades since the beginning of the HIV crisis, another virus has reached pandemic status and wreaked havoc across the world on unprecedented levels. COVID-19, the disease caused by the novel coronavirus, has a much higher transmission rate than HIV and has already infected over ​20 million people worldwide while claiming over 700,000 lives​, since the initial outbreak in Wuhan, China.

The differences between both viruses are undeniable: HIV is primarily transmitted through sexual activity and COVID-19 is spread through airborne particles. While it ​took HIV seven years to claim 100,000 lives in the US, the coronavirus reached the same figure in just three months. But while COVID-19 has a reported 3% fatality rate according to the WHO, acquiring HIV in the 1980s signified almost certainly that you would die.

“It was basically a two-year death sentence,” Kallmeyer says. “Once you got it, there was nothing you could do–you would be gone in two years.”

For survivors like Kallmeyer and many others, the collective feeling of anxiety throughout the coronavirus pandemic is reminiscent of the early days of the HIV crisis.

“It’s just like the 1980s. At first, HIV was this invisible thing and nobody was sure how you could get it,” Kallmeyer explains. “By the time everyone was aware that it was out there, most gay men in cities already had it and it was too late.”

During the HIV crisis, this omnipresent social anxiety often translated into discrimination against the already embattled gay community, as well as stigmatization against HIV-positive people. This prevalent attitude exacerbated the crisis.

“We [the gay community] were already beaten down and politicians seized the opportunity to paint us as the enemy,” points out Kallmeyer.

Experts in the field agree. Dr. David Grelotti, a psychiatrist at the UC San Diego-affiliated Owen Clinic, an HIV treatment center, draws a parallel between the HIV crisis and the coronavirus pandemic. “One big similarity between COVID-19 and HIV is a co-epidemic of fear,” explains Dr. Grelotti.

“Although HIV is in a very different situation now that we understand the virus and how to treat it, ignorance of the ways in which HIV was transmitted led to the stigmatization of people with HIV.”

Many fear that the same mistakes made by the US government during the HIV crisis are repeating themselves in the face of the novel coronavirus.

For one, critics of the Trump administration accuse him of downplaying the severity of the current pandemic and not doing enough to contain the spread of the virus in the US early on. ​Studies by Columbia University researchers suggest that if nationwide lockdowns – which President Trump vehemently opposed – had been implemented on March 1st, two weeks before people began staying home, at least 36,000 lives could have been saved. In contrast, on February 28th, Trump claimed at a news conference that the virus ​“would disappear like a miracle​.”

Ronald Reagan, whose presidency coincided with the initial phase of the HIV crisis, was similarly criticized for ignoring the epidemic, as well as ​underfunding research to key organizations such as the Centers for Disease Control. The first time Reagan gave a speech addressing the HIV crisis, in 1987, more than 36,000 Americans had been diagnosed with the virus​, and over 20,000 had died.

With the coronavirus, some are concerned with the misinformation being spread by the highest levels of government and conflicting opinions among the populace.

“A patient with HIV mentioned to me that all these clinical trials for COVID-19 reminded him of the early HIV clinical trials,” Dr. Grelotti said. “He worried about the toxicity of hydroxychloroquine because the early HIV drugs were so toxic.”

Hydroxychloroquine, a drug ​touted by Trump as a potential cure for COVID-19, has been ​dismissed by the WHO​, citing “no empirical evidence” that it helps treat or prevent the virus.

What is happening now, in 2020, helps us understand the level of mistrust in the government that widely characterized the HIV crisis.

“The government didn’t guarantee anonymity,” says Kallmeyer. “If you tested positive, you’d lose your job, your friends and even your family. And there was no treatment. So the leaders in the gay community said ‘don’t get tested.’ It was better to be in the dark and not know.”

“Once you got the diagnosis, you were marked.”

Grassroots movements and science-backed evidence at the forefront of the fight against HIV may serve as a model for combatting COVID-19

While the HIV crisis decimated the core gay population of urban America, it also inspired the LGBT community to take matters into their own hands. Many grassroots movements arose in order to denounce government inaction toward the pandemic, notably “ACT UP (Aids Coalition to Unleash Power),” which began in New York in 1987.

Founded by Larry Kramer, ACT UP took an unorthodox approach in its activism by promoting civil disobedience and direct action in high-profile venues such as the Supreme Court, the National Health Institute and other places of power that were viewed as being complacent toward the pandemic.

For this reason, Dr. Grelotti highlights the importance of community organizations to help protect the most vulnerable in times of crisis.

“Community advocacy was a big reason that HIV research was funded and there was a coordinated response to the HIV epidemic by the US. We need advocacy now to assure that our systems are most responsive to community needs.”

Other activists focused their energies on the cause of the epidemic and how they could help curb the spread of the virus altogether. One of these activists was Richard Berkowitz, a gay rights pioneer who spent the early 1980s as a sex worker in New York City. Having contracted HIV himself, he was quick to realize that there was a strong correlation between sexual practices – namely, having unprotected sex with multiple partners – and the high prevalence of HIV among sexually active gay men.

“By 1982, people like me, who lived in the fast lane of urban gay life, could see firsthand that something really bad was happening” says Berkowitz in an interview.

Along with his personal physician, Dr. Joseph Sonnabend, and gay musician Michael Callen, Berkowitz published the 1983 pamphlet ​How to Have Sex in an Epidemic: One Approach,​ in an attempt to teach the gay community on how to reduce or eliminate the risk of HIV infection.

“Dr. Sonnabend was an infectious disease expert who specialized in sexually transmitted diseases, so he taught me and Callen ways to interrupt transmission and what gay men could do to modify or eliminate the risks,” explains Berkowitz.

In the acclaimed pamphlet, which was featured in that year’s New York Review of Books, Berkowitz and Callen advocated for the use of condoms as the surest method of protecting oneself against sexually transmitted viruses. HIV had not yet been identified but Sonnabend rightly believed their guidelines would work even if a new virus were found.

What seemed like a minor lifestyle change for Berkowitz and Callen did not come without resistance, however.

For those gay men who championed sexual freedom as the pinnacle of gay male liberation, any restrictions on their behavior were viewed as an attack on their identity. ​How to Have Sex in an Epidemic argued that sexually transmitted viruses and infections which had reached epidemic proportions by the 1970s, were either playing a role in contributing to HIV or propelling the spread of whatever was.

According to Berkowitz, this claim turned him and Callen into pariahs, as many viewed the intention of safe sex as a form of placing the blame of the epidemic on promiscuity, an already heavy stereotype of the gay community at the time.

“The problem with some activists was that once we suggested that the lifestyle had something to do with AIDS, they hid behind the disclaimer that no one knew what was causing AIDS, but that it was probably a virus,” claims Berkowitz.

For Berkowitz, a lot of the denial and defiance witnessed in the COVID-19 era reminds him of the opposition he faced against his advocacy for safe sex practices in the gay community.

“Unfortunately, just like there were sex radicals that thought HIV was a conspiracy to take away their sexual abandon, now we have people refusing to wear masks because they think this whole thing is a conspiracy to undermine their freedom,” he explains.

“Our point in the pamphlet ​was that even if you were exposed to the virus, protecting yourself – and your partners – from other STDs would protect all gay men’s immune systems and make it more likely that we’d be able to fight HIV for a longer period of time.”

Social quarrels aside, just like HIV, the coronavirus’s biggest victims are marginalized, at-risk communities. The CDC estimates that, in comparison to white people, ​African Americans are 5.3 times more likely to be hospitalized for COVID-19 infections, while being 1.4 times more likely to die from the disease​.

Some states illustrate the racial disparity in a bleak manner: in Louisiana, African Americans form just ​32.8% of the population​, yet 49.38% of all COVID-19 deaths​.

“Anyone can get HIV or COVID-19, but these diseases target vulnerable groups,” says Dr. Grelotti. “We worry that people with HIV might be more at risk for COVID-19 because COVID-19 and HIV share many risk factors, which are often social in nature, not biological.”

After months of recurring outbreaks, there is little hope in sight that the US is beginning to flatten the coronavirus curve. With the public anxiously awaiting a vaccine or at least effective forms of treatment, Berkowitz cautions against betting on a magic pill. He cites early HIV activists’ promotion of the medication Azidothymidine (AZT) as an example of a well-intentioned cause gone awry.

“When ACT UP took to the streets to lower the price of AZT, how did they know it would do more good than harm? As it turned out, AZT was a disaster for many gay men who took it. They were prescribed double the correct dosage and the study that the approval was based on was completely flawed and rushed to get to the drug market.”

In a time of hopelessness and fear, the overprescription of ​AZT unnecessarily led to many preventable deaths in HIV patients.

For people like Kallmeyer and Berkowitz, living through a second pandemic has been a thought-provoking experience, one that has opened wounds that never fully healed.

“This abject fear that society is feeling right now will probably go on for another six months, and then it’ll subside,” says Kallmeyer. “What everyone is feeling right now was going on for the gay community not for six months… but for six years. It was just this gloom and doom for six years, with no cure in sight.”

It has been 37 years since that sunny afternoon in Phoenix when Kallmeyer first learned about HIV, a virus that would not infect him but affect every aspect of his life. ​Over 30 million people have died of HIV worldwide since 1981​. There is still no vaccine up to this day, despite different treatment options which include diminishing the viral load until it is undetectable—nevertheless, a large portion of the HIV-positive population, located in developing countries, ​lacks access to any form of treatment​.

Dr. Grelotti’s message during the coronavirus pandemic is a simple one: we’re all in this together.

“We have to cooperate at every level to beat the pandemic: Families, friends and neighbors; employees and employers; doctors, nurses, health systems, and public health programs; media; local, state, and the federal government. A threat to health anywhere is a threat to health everywhere.”

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