What the Fight Against HIV Can Teach Us About Surviving the COVID Era

This year marks 40 years since the discovery of the HIV virus, an anniversary that rings a little different during the COVID-19 pandemic. While they come from different virus families and are transmitted differently, the impacts of both—and what each reveals about society—are strikingly similar.

Researchers have related the T-cell exhaustion that weakened immune systems post-COVID infection to that of HIV but on a virological level the similarities stop there. HIV targets the body’s complex immune system, attacking it at multiple levels, and is transmitted through bodily fluids, making it easier to mitigate on an individual level. COVID, which is airborne and harder to mitigate individually, attacks organ systems throughout the body.

But survivors of the HIV/AIDS crisis of the 1980s and 1990s have been noticing unsettling patterns of human disconnection and disposability through both pandemics. They warn that society will continue repeating these deadly systemic cycles if we ignore past failures. But, they say, if we choose to learn from them, we can create a fairer and more caring society.

Jade Elektra, known as Alphonso King Jr. out of drag, was diagnosed with HIV in 1990. She’s suspected she was positive since 1989. At the time, AIDS—referring to the final stages of HIV—was considered a death sentence, but Elektra was reluctant to get tested because she feared the stigma associated with diagnosis. 

“If there was even a rumor [of being positive], it could ruin your whole life,” she says. “You could lose your housing, you could lose your job.” 

If she didn’t know she had HIV, she reasoned, she wouldn’t have to tell anyone about it. It wouldn’t be until she took a trip to New York from her hometown of Tampa, Florida, that she could envision a life after diagnosis and worked up the nerve to get tested. 

According to Elektra, now a Toronto-based drag queen, DJ, and national ambassador for the Canadian Foundation for AIDS Research (CANFAR), the stigma associated with HIV—alongside homosexuality and drug use—fueled a lack of public concern towards HIV prevention. Since it seemed to only impact groups that society already deemed undesirable—mostly racialized, queer, sex worker, incarcerated and substance-using communities—there was no urgency to develop effective testing, treatments or vaccines. 

Elektra says she’s seeing the same thing being done with COVID using misinformation. Current public messaging emphasizes that only the sick, disabled, and elderly face serious risks if they contract COVID—disproportionately so for racialized and other marginalized groups—but that the healthy, able-bodied, and young should be prioritizing the health of the economy. 

From Elektra’s perspective, many are also reckless choices during COVID that remind her of what she witnessed at the height of the HIV epidemic. Back then, it was unprotected sex—now, it’s also attending parties, festivals, and other unsafe gatherings. In both cases, she worries people in her community don’t understand the long-term consequences of their actions, or the long-term benefits of taking better precautions. 

Elektra says that in hindsight, she feels she only engaged in the unprotected sex that exposed her to HIV because she saw others doing it around her. And now she sees queer men foregoing condoms with the availability of medications like PrEP, because they see them as equal prevention measures. Though these drugs are a valuable tool, they’re not a panacea: The same drug that she uses to treat her HIV has caused her kidney-damage from long-term use. 

Similarly, Elektra is concerned that her community has given up on preventive measures for COVID, and has returned full-tilt to gatherings without masks. While vaccines improve outcomes after infection, there’s not enough long-term research to support using it as a substitute for masking. Elektra says while she understands why people want to gather and enjoy themselves after months or even years of isolation, many friends she lost to HIV also “just wanted to have a good time.” 

Getting diagnosed prompted her to ask herself the question she thinks others should ask themselves: “Who do you trust with your body and why are you doing what you’re doing?”

But she doesn’t blame the individual alone. Institutions are shifting the burden of cost of COVID prevention away from themselves by cutting corners on costly systemic solutions like contact tracing and air quality control. This is exacerbated when government funding is set-up “like the Hunger Games,” explains Elektra, who has worked in HIV advocacy and witnessed organizations being pitted against each other, with the smaller grassroots groups that do the groundwork often receiving the least money.

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Trevor Stratton has been positive since 1990, and sees other parallels between the COVID-19 pandemic and the early days of the HIV epidemic, when he was a young questioning two-spirit teen. 

Stratton, who’s the Indigenous Leadership Policy Manager for CAAN Communities, Alliances & Networks, says that in the face of both illnesses, marginalized communities found ways to take care of each other in the face of indifference or outright hostility from governments and treatments they didn’t fully trust. One of the first treatments for HIV was a cancer drug known as AZT, which had originally been discontinued as a cancer treatment because of its toxicity. While it was effective at destroying the HIV virus, it also destroyed the patients’ bodies. Communities that had histories of collective medical trauma—like the deliberate deception and neglect of Black Americans in the Tuskegee study in Black populations or the forced sterilizations of Indigenous women— were justifiably suspicious of the COVID-19 vaccine. 

But as many Indigenous—and gay—communities did with HIV, Indigenous peoples introduced COVID prevention strategies in ways that built trust and kept people safe in ways that governments were unable to do for Indigenous populations living in urban centres. Stratton says that Indigenous peoples used traditional storytelling and teachings, such as the intergenerational responsibility of youth and elders to care for each other, to communicate public health messaging while many created their own care strategies, including providing food, testing, cultural medicines, and other health needs to those isolating or quarantining.

Similarly, HIV was originally met with an unofficial prevention campaign led by gay men about how condoms could reduce transmission rates. Because many physicians initially refused to care for or treat HIV patients and there was a systemic push to segregate them from the general public, the queer community had to step up to tend to their loved ones. 

Stratton says that the problem in official public messaging has to do with how people outside of marginalized communities view them, using a statistical lens that sees them as “problems to be solved” instead of telling what he describes as their “strengths-based stories.” While Indigenous communities took a culturally-informed compassionate approach, mainstream culture relied on criminalization and policing during lockdowns, such as heavy fines for breaking restrictions. 

These penalties, he explains, impacted marginalized communities disproportionately in the name of prevention. “Criminalization drives things underground,” says Stratton, which he sees with HIV transmission in Canada, resulting in Black men and Indigenous women receiving the highest conviction rates and facing longer punitive sentences. 

For Stratton, the pandemic has been used to undo progress on causes and “revert back to colonial laws.” Stratton agrees with the argument that a push to “return to normal” is a push to return to the colonial agenda, and says that both HIV and COVID revealed a lot about who society still finds disposable. 

“Forty percent of people living with HIV in the world do not have access to the medication, to antiretrovirals and the drug cocktails and they’re gonna die of AIDS,” he says. “The rich, in the case of COVID, were the ones that spread it around the world.” And the poor were far more likely to die from it.

Sean Hosein isn’t diagnosed with HIV but he’s been involved in HIV/AIDS activism in Toronto since the 80s, even publishing a “Treatment Update” for people living with HIV in order to share accurate information with his community. 

He worries that as a society we’re moving more towards individualism because of capitalism, causing us to care less about others, leading to the resulting crises in housing, labor, healthcare and beyond.

Hosein, who’s now the science and medicine editor at CATIE, points to social media and smartphones working in conjunction with isolation from social distancing, as a catalyst for disconnecting communities from each other. He says the algorithms are designed to disconnect us from each other, while it’s already been reported how social media has been used to manipulate political outcomes.

If the past is any indicator of the future, the last 40 years demonstrate the importance of sustaining momentum. In Canada, it’s estimated that roughly 13% of people living with HIV are still undiagnosed and its prevalence has been increasing nationally since 2014. Meanwhile for COVID, vaccine efficacy and testing accuracy is already trending downwards. 

But, Hosein points out, HIV activism revolutionized drug trials which allowed COVID vaccines and treatments to be produced at unprecedented speeds. The more seriously we take COVID now, the better prepared we’ll be for the next global health crisis. “We need to keep investing in public health,” Hosein says, “because it’s good for all of us.”