At a press conference on April 23, 1984, then-president Ronald Reagan’s Secretary of Health and Human Services, Margaret Heckler, made a significant announcement: First, that scientists had identified the virus that caused acquired immunodeficiency syndrome; second, that a blood test to identify people living with the virus had been developed; and third, that a vaccine for HTLV III (or human lymphotropic virus 3, which would later be called human immunodeficiency virus) could be produced within two years.
When Heckler made her address, Reagan had yet to say the word “AIDS” in public. ACT UP New York would not be formed for another three years, meaning there was no collective organization holding the federal government or pharmaceutical companies responsible for their negligence. One year after the press conference, more people would be diagnosed with AIDS than in all six previous years combined: 8,406, an 89% jump from 1984.
Thirty-five years later, some of Secretary Heckler’s remarks have come true: Being tested for HIV is a normal part of health screenings in the United States, and highly-active antiretroviral therapy and preventative medications like pre-exposure prophylaxis (PrEP) have given us what many people might call a “functional cure” for the virus. And though there is still no widely available vaccine, three people have actually been cured of HIV: the Berlin Patient, the London Patient, and, most recently, the Dusseldorf Patient, who has been HIV-free for at least three months. But these cures came in instances where people needed really harsh, dangerous procedures like bone marrow transplants, which carry a high mortality rate and involve replacing a patient’s entire immune system.
“It’s like trying to get rid of the termites by burning down the house; it’s pretty dangerous and really hard on the body,” says David Wohl, a professor at the University of North Carolina School of Medicine and an infectious disease doctor. He notes that some researchers are looking into what he calls “transplant-lite,” or devising a way to get only the benefits of the transplant — a new immune system — without all of the side effects. Nonetheless, Wohl is “optimistic” that the future of HIV science still looks promising.
“There will be a cure eventually,” Wohl says. At the heart of cure research, he adds, is the human immune system which scientists are learning to harness in a way they never have before. Currently, medical treatment involves suppressing the immune system in some way. But HIV researchers are hoping to turn traditional wisdom on its head and harness our immune system’s natural mechanisms to fight the virus.
“Elite controllers” are a group of people whose bodies naturally produce antibodies to fight HIV, though no one knows exactly why they produce such a robust response. Many of them never even have to go on HIV treatment because they naturally produce broadly neutralizing antibodies, or bNAbs. Wohl says HIV researchers have already replicated these bNAbs in laboratory settings. In the future, it may be possible to give bNAbs from one person living with HIV to another. That, Wohl says, may also be significant for cure research.
“Based on funding, based on the science that’s getting a lot of attention, it’s clear that a lot of people feel our therapies are not good enough,” he says. “There are some really talented people working in the finest places on the planet to find a cure. They’re not getting what will be the blockbuster; they’re getting us closer to it.”
But the existence of a medical cure doesn’t necessarily mean that all HIV-positive people will have access to it. In the last decade, we’ve seen the politics of a cure play out for marginalized populations — and the result was deadly. Gilead, the company that makes several HIV treatment drugs and Truvada, the drug commonly known as PrEP, also manufactures Harvoni, the drug that can cure hepatitis C. Currently, 4 million Americans live with HCV, which can cause liver cancer, liver scarring, and other fatal illnesses.
Unfortunately, Harvoni infamously costs about $1,125 per pill, with a full course costing $94,500. The sticker price is a form of gatekeeping by some insurers of who can access the cure, meaning that only people with severe liver damage are allowed to access the medication. “You [have] to be at your worst to get the hepatitis C cure,” says Jawanza James Williams, director of organizing at the grassroots organization VOCAL-NY. “I think the same will happen when it comes to HIV.”
At every step of the way, certain demographics shoulder unequal burden when it comes to HIV. Racism, homophobia, transphobia, and classism are the reasons poor people, queer people, people of color, and trans people all experience a higher risk of acquiring HIV, have worse access to medical care, and could ultimately face unequal access to the cure. “This is a virus that illuminated all the worst parts of ourselves,” says Theodore Kerr, a New School professor and AIDS philosopher who is also part of the “What Would an HIV Doula Do?” collective. “HIV is also a stand-in for much bigger inequalities.”
The American South is a perfect example of the many ways that intersecting inequalities give HIV a place to thrive. Although one-third of the United States’ population lives in the South, about 44% of HIV diagnoses and 47% of deaths from AIDS occur there annually. The diagnosis rate is especially high among Black Americans living in the South. As Adam Geary writes at the beginning of his book, “The color of AIDS in America is Black.”
The South’s legacy of structural racism exacerbates the HIV epidemic for most of its Black residents. More than 56% of Black trans women in the United States are HIV positive and half of all trans people who receive an HIV diagnosis live in the South. And as 32 states currently have inhumane laws criminalizing HIV exposure on the books, those laws disproportionately affect Black people, who are already targeted by the United States’ criminal justice system.
“For people living with HIV and others in the community who face criminalization for simply existing, the mechanisms that target Black and brown bodies for incarceration are decimating people’s chances for survival,” American Civil Liberties Union lawyer Chase Strangio said in a 2015 Truthout interview. “The use of criminal law to combat the AIDS epidemic has lingering and devastating consequences for the queer community, particularly for Black queer people who are already targeted by police.”
For Williams, the cure for HIV is not only a biological discussion, but also a sociological one. The solution lies in how the government can address an epidemic affecting disenfranchised communities, which includes a future where government assistance programs are available to all. When people living with HIV are healthier, Williams says, they’re more able to organize and fight for their rights.
“I don’t think the cure is what we should be holding our breath for. Folks should be helping others access their rights,” Williams says. “We set the standard for what society looks like and provides. We need the political power to be able to demand — and that’s the fight of our lives right now.”
This is one of our 50 Radical Ideas, featured in Out's June/July 2019 issue celebrating Stonewall 50. The three covers feature the enduring legacy of activist Sylvia Rivera, the complicated candidacy of presidential candidate Pete Buttigieg, and the triumphant star power of actress Mj Rodriguez. To read more, grab your own copy of the issue on Kindle, Nook, Zinio or (newly) Apple News+ today. Preview more of the issue here and click here to subscribe.