December 1st is World AIDS Day. Here at O.school, we’re talking about the progress that has been made in preventing and treating HIV/AIDS — and the work that still needs to be done in destigmatizing it, providing healthcare to all, and changing the ways we talk about people who live with HIV.
There’s no question that so much has changed since the ‘80s. We elected our first Black president, we legalized same-sex marriage on the national level, we sent a car into space for the first time and the list goes on. But one of the most fundamental transformations has been in the views and attitudes toward HIV and AIDS.
December 1st marks the 31st celebration of World AIDS Day, a day designed to “bring attention to the HIV epidemic, endeavour to increase HIV awareness and knowledge, speak out against HIV stigma, and call for an increased response to move toward ending the HIV epidemic.” To dig a little deeper into just how much things have changed (and what still needs to change) in the almost 40 years since the epidemic first began, I spoke with three people whose experiences living with or researching HIV or AIDS span the decades.
Mass hysteria, mass stigmatization
Eric Sawyer, one of the founding members of ACT UP and Housing Works, has been living with HIV since 1984. He tells O.school that there was “mass hysteria, mass stigmatization” in New York City when the virus began spreading among communities because of limited information. “Nobody knew what the illness was, what was causing it, how it was spread, and how infectious it was,” Sawyer says. He found solace through ACT UP, the coalition he helped form during the crisis to fight government and medical negligence. He then teamed up with other members in 1990 to start Housing Works to support homeless New Yorkers with HIV and AIDS. “The community had to take care of our own,” Sawyer explains.
In 1980, after Sawyer started experiencing flu-like symptoms, swollen lymph nodes, and fatigue, he visited a “regular doctor who didn’t have a gay practice,” he recalls. He had a biopsy and was tested for mononucleosis and Hodgkin’s disease. The doctor, Sawyer tells me, was “clueless.” AIDS activist and ACT UP co-founder Larry Kramer put him in touch with a doctor who was experienced in treating the new disease, and there weren’t many of those doctors at the time — it wasn’t until 1982 that the term AIDS was actually used. Before that, it was (inaccurately) called gay-related immunodeficiency, or GRID. By 1984, Sawyer and his partner both discovered they had HIV, the virus that can develop into AIDS.
When I ask him what it was like being diagnosed with HIV at that time, Sawyer tells me: “Basically it [made me feel] a general terror or horror or massive fear about how long I would live.” Back then, being diagnosed with HIV was like being given a death sentence. “You never made plans for vacations or [for] visiting your family for Thanksgiving until two or three weeks beforehand because you literally didn’t know if you were going to be well enough to travel, or if you would come down with pneumonia and die,” Sawyer says. “Many, many, many of my friends died.”
Misinformation about how the infection spread led to open prejudice. According to Sawyer, there were people with HIV or AIDS who lost their jobs, were evicted from their homes, or were even refused care at hospitals or funeral parlors. “There was very aggressive, outright discrimination and mistreatment of both people who were symptomatic, with people who had full-blown AIDS, but also of gay men in general,” he told me. “Just out of fear that, if they’re gay, they may be harboring this horrible disease that kills people really quick and in ugly manners.”
Author and professor Suzane Bricker, who wrote her dissertation on the reporting of the AIDS epidemic, tells O.school that reckless coverage contributed to the lack of information and stigmatization around the disease. “The quality of reporting was not good. The emphasis of coverage was not on ‘Who’s dying? How can we fix this?’ It was more on the salacious stuff,” she says.
Bricker says that, at first, HIV and AIDS-related illnesses were described using words that reminded her of comic books, like “gay scourge,” which reinforced some people’s ideas that the virus was punishment for being gay.
Sawyer remembers a time when he and his partner visited a restaurant. His partner displayed symptoms of the virus, like Kaposi Sarcoma and dramatic weight loss. The server walked over with a garbage can and threw out the glass and utensils he had used. “It was an extremely fearful, stigmatizing, discriminatory time,” he told me. And it was a time without any legal protection for those living with the virus.
From “death sentence” to manageable
It wasn’t until the mid ‘90s that things started getting better for Sawyer and others — 15 years after the first cases of what became known as HIV were reported. According to Sawyer, there was a “Lazarus effect” on people who were living with the virus at that time. Thanks to the introduction of triple cocktail therapy (or antiretroviral therapy), “I started to see a rebound effect, where we started being able to eat and not having diarrhea. Our T-cells started to increase, showing that our immune system was rebuilding,” Sawyer says. It was then that Sawyer started to think, “Maybe I won’t die from this disease.”
Andre Jordan, an HIV-positive actor in his 30s, tells O.school that he’s heard stories about what it was like living with the virus back in the ‘80s. When I ask how he thinks his life would’ve been different then , he says, “I don’t think I would be alive.” He attributes medical progress to the LGBTQ+ community taking charge: “They wanted to put the blame on us for [the] disease and let it kill us. We fought back,” Jordan says.
Though he can’t exactly compare his experiences to those who were diagnosed at the onset of the epidemic, Jordan is certain there is now more awareness, prevention, and treatment. “Today, it’s not a death sentence,” says Jordan. “That’s major when you take into account that it was [seen that way] only 40 years ago.”
The numbers support Jordan’s optimistic claim, and also show us that we still have work to do. In 2013, the UNAIDS announced the 90-90-90 campaign, which, by 2020, aims to see 90% of people with HIV learn their status, 90% receive antiretroviral therapy (ART), and 90% reduce their viral load to an undetectable level, with an end to the epidemic entirely by 2030. As of 2018, the percentages were 79%, 78%, and 86%, so we’re not predicted to hit the 90-90-90 targets by 2020, but we’re still seeing steady progress and major developments in prevention.
Medical advancements are changing things for the better
Earlier this year, it was scientifically proven that HIV-positive people with undetectable viral loads as a result of ART can’t transmit the virus to partners. This new research comes on the heels of the Prevention Access Campaign’s U=U initiative, which was launched to spread awareness, encourage people to get tested and seek out treatment, and prevent future transmission of the virus.
There’s now also hope for a cure. Bone-marrow transplants have been shown to send HIV into remission, but it’s too early to tell if that can be sustained without ART. Studies are also looking into whether broadly neutralizing antibodies (bNAbs), early treatment intervention, or long-acting ART can achieve the same result. While none of these methods are officially reported to ensure life-long remission, they certainly prove that things are changing for the better.
Some of these medical advancements, like U=U, came not long after Jordan was diagnosed with HIV in September of 2015. While on tour for the musical Joseph and the Amazing Technicolor Dreamcoat, he received a “possible positive” when he accompanied a friend to their HIV test. A possible positive, or a reactive test result, means that the test was inconclusive and another one is needed. Once Jordan retested and got his official diagnosis, he mostly kept the news to himself after sharing it with his mom and a close friend. “I was definitely in shock,” he says. “I felt terrified, sad, disappointed, and pretty embarrassed.” He waited until the tour was over to get health insurance and start treatment. Eventually, his viral load was undetectable (aka untransmittable) thanks to these various advancements in medicine.
Still, we have a lot of work to do
Even with this medical progress, Jordan emphasizes just how crucial health insurance is in order to access HIV treatment. Without it, the drugs are prohibitively expensive — protease inhibitors alone can cost thousands of dollars out of pocket each month. “There have been times when I’ve, unfortunately, had to go off of them for a time because I couldn’t afford it,” he tells me. “These treatments are out there and can literally save lives. They should be much easier to attain, especially after everything we’ve [been through since] the AIDS crisis.” Due in part to how difficult it is to pay for treatment, HIV disproportionately affects communities of color.
And after living with HIV for 35 years now, Sawyer continues to find some conversations about his diagnosis difficult. When trying to meet partners on dating apps or in person, he can sense fear in people. “When they find out that I have HIV, they basically say, ‘No, I’m sorry,’” he explains. Even with the discovery that undetectable equals untransmittable, people still worry that they’re at risk for infection.
Despite the persistent stigma against and misinformation about HIV and AIDS, Jordan points to medical advancements like pre-exposure prophylaxis, or PrEP, as powerful tools that can change how the conditions are viewed today. He says that pills like PrEP, and other HIV medications on the market, have made prevention and treatment much more manageable. He encourages anyone who is sexually active to look into PrEP because, as he tells me, “We have the full capability to stop the spread of this disease before [researchers] even find a cure.” Barring, of course, anyone’s inability to pay for that medication.
Even with so many advancements to stop HIV and AIDS from spreading, Sawyer warns that the medications themselves might be a barrier to health in the long run. “The irony is that a lot of people, unless you’re a longer-term survivor like myself, who, you know, has been on these drugs for a long time, don’t realize that they’re hard to tolerate, [and there are] unpleasant side effects from long-term use,” he explains. His solution? More research. “There’s a lot to follow up [on] for drugs,” including looking into their side effects and exploring different medications, he says.
So, after four decades of progress, it’s clear that we still need more awareness, prevention, research, and treatment to effectively support people living with HIV and end the virus altogether — including, like Sawyer and Jordan mention, improving our understanding of drugs’ side effects and making medications more accessible. Until the cure is discovered, though, Jordan says that he feels optimistic about his future as a person living with HIV. For now, he explains, “The best I can do is to tell my story and my truth in hopes that someone else will feel that they’re not alone.” He continues, “A lot of queer artists, myself included, have used social media as a way to open up about their experiences… Visibility matters. I think the conversation is getting easier because we’re the living examples that we’ve come so far.”
Since the discovery of HIV and AIDS, many resources have been created so that no one ever has to feel alone.
You can easily find a testing area near you or get support and information whenever you need it. If you want to help build a better tomorrow for people living with HIV and AIDS, donate to organizations like ACT UP, Housing Works, and UNAIDS. Together, we can keep the progress going and end this epidemic for good.