EXPLAINER

The AIDS crisis never ended — and COVID may have even made it worse

Encouraging breakthroughs make headlines, but testing rates fell during COVID as new infections rose

By Mary Elizabeth Williams

Published February 21, 2022 2:00PM (EST)

A participant seen holding a Housing Works banner at the protest. On World AIDS Day, the End AIDS New York Community Coalition gathered outside Governor Cuomo's offices in Manhattan, to convene at a rally and press conference, demanding Governor Cuomo to make good on his commitment to end AIDS as an epidemic in New York State, in a full and equitable manner that eliminates persistent HIV health disparities based on race, poverty, and marginalized identities. (Erik McGregor/LightRocket via Getty Images)
A participant seen holding a Housing Works banner at the protest. On World AIDS Day, the End AIDS New York Community Coalition gathered outside Governor Cuomo's offices in Manhattan, to convene at a rally and press conference, demanding Governor Cuomo to make good on his commitment to end AIDS as an epidemic in New York State, in a full and equitable manner that eliminates persistent HIV health disparities based on race, poverty, and marginalized identities. (Erik McGregor/LightRocket via Getty Images)

The report out of Denver earlier this month, that an unnamed woman being treated for leukemia may have become the third person ever to be cured of AIDS, made headlines around the globe. More than four decades into a crisis that has killed nearly 80 million people, the news offered real hope of an end to AIDS on the horizon. It also served as a potent reminder, two years into a different deadly epidemic, that this earlier one never went away.

The US government estimates that 1.2 million Americans are living with HIV, the virus that causes AIDS, and approximately 13% of them don't even know they're HIV positive. That's more than the number of Americans who have Parkinson's disease or multiple sclerosis. Although the HIV-related mortality rate has plummeted since its peak in the nineties, it's still among the top ten causes of death for people aged 25 to 44. (While HIV diagnoses dropped for most age groups between 2015 – 2019, they have held steady among young adults.) And HIV, like COVID-19, is far more pervasive and deadly in the most vulnerable populations.

"As you're drawing the parallels between the HIV and Covid epidemics, I don't think people were surprised to see the same racial disparities show up. One of the sad things to reflect on is the reality that Black men and Latino men, Black women and Latino women, and certainly, transgender women, are disproportionately affected by HIV," says Marc Meachem, the head of U.S. External Affairs at ViiV Healthcare, a company solely focused on HIV and AIDS treatment and research. "Those disparities were there at the beginning of that epidemic. And because in the early days the face of HIV activism was really a white gay male face, I think that led people to think that it was a problem limited to them. Those disparities are enduring, and still here."

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Shows like "Pose" illuminated the devastation of AIDS to trans women and people of color, but left the story in the past. The numbers tell a different story. While the impact of the COVID-19 pandemic is yet to be calculated, the CDC estimates that in 2019, 34,800 Americans were newly infected. That number is likely to be rising, as the restrictions of the pandemic have created a decline in testing and treatment. "At the worst, it potentially brought us an increase of cases for at least the next couple of years," Emory University researcher Samuel Jenness told Fortune last year.

Dr. Sarah Bauerle Bass, an associate professor and director of the Risk Communication Laboratory at Temple University, says, "Covid is everywhere. It occupies everybody's brain and that's all everybody talks about. That kind of pushes away anything else that might be important, especially for young people who are sexually active. They're not getting that information that really gives them the sense that this is a risk that I need to listen to." She says, simply, "Wear a mask — and use a condom."

And that advice is especially important for people belonging to high risk groups. Nearly a quarter of the people living with HIV in this country are cisgender females, and straight women are diagnosed at more than twice the rate of straight men. The CDC also notes that "Blacks/African Americans represent 13% of the U.S. population but accounted for 44% of new HIV diagnoses, [and] Hispanics/Latinx represent 18% of the U.S. population but accounted for 30% of new HIV diagnoses." As Meachem explains, "When you look at the lifetime chance of acquiring HIV, statistics are that it can be from one in two to one in three Black gay men will acquire HIV. Similarly, for gay Latino men, that number is one in four."


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What's going on, and what can be done? The first challenge is reducing transmission.

"We're not talking about HIV like we used to," says Dr. Bass. "People, especially young people, aren't getting a lot of that education in school like they used to. There used to be AIDS-specific health education in most school districts. That's been largely taken away, or it kind of just gets enveloped into a general discussion around sexually transmitted diseases. You just don't have that kind of level of heightened awareness anymore. I think that's why we're starting to see this uptick in infections in some of these younger populations."

Dr. Gary Blick, the chief medical officer of Health Care Advocates International, agrees. "Education in schools is a problem," he says. "I take care of so many transgender kids that are not getting HIV education in school, don't even never heard of PReP [pre-exposure prophylaxis]. You can't talk about PReP in a high school when you get your sex education and health classes? The thing that's really troubling me is we're still dealing with HIV stigma and discrimination. I think that's probably our biggest hurdle to overcome still."

Another huge set of challenges is in getting — and maintaining — treatment. Dr. Bass says, "You definitely see what we would call the HIV care continuum. From the time somebody tests positive and actually gets into care and is on antiretroviral therapy, you see drop off at every stage. People get tested but don't get into care, or maybe people start care but then drop out of care, or people start taking antiretroviral therapy but then stop or are not adherent to that antiretroviral therapy. There's different levels of disparities that are happening in that way too, because people at those different stages often either don't have healthcare or have the type of healthcare that isn't going to pay for long-term antiretroviral therapy. There's all sorts of barriers to people getting to that gold standard of being on antiretroviral therapy that keeps it into that chronic condition."

For people who have health insurance and access to efficient care, there is good news. Science has come a long way in prevention and treatment, which means more people at risk living longer and healthier lives. Just this month, the FDA approved a new injectable treatment for HIV-1 that can be dispensed every two months. That's a big deal, considering that eleven of the current FDA approved treatments are once a day pills. "Going from 365 to six [treatments a year] is just an incredible level of innovation," says Meachem. "That daily pill for some people is a daily reminder of living with HIV. People are able to give up some of that mental space, and have a sense of freedom of that burden."

And now, that encouraging recent news about an individual seemingly cured, via a unique umbilical cord blood transplant, cracks the door of possibility open even wider. The patient's profile makes the breakthrough even more significant. "The fact that she's mixed race, and that she's a woman, that is really important scientifically and really important in terms of the community impact," Dr. Steven Deeks, an AIDS expert at the University of California, San Francisco, told the New York Times this week.

The AIDS crisis is still a crisis. We are still a long way from wiping the disease out, and COVID-19 has presented unique challenges and setbacks to progress. But the potential for a world free of AIDS is there.

"I think people, particularly in the disproportionately affected populations, need to have a sense of hope," says Meachem. "We've had so many struggles in the country over the last few years. I think that people aren't aware of the full breadth of the science. I feel like our job is to create hope. It's to say to people, 'Look, we can end the epidemic.'"

More HIV and AIDS coverage: 


Mary Elizabeth Williams

Mary Elizabeth Williams is a senior writer for Salon and author of "A Series of Catastrophes & Miracles."

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