Black queer activist Preston Mitchum has been on PrEP — pre-exposure prophylaxis, a medication used to reduce the risk of getting HIV — since around 2014, just two years after its approval by the U.S. Food and Drug Administration.
The Washington, D.C., resident remembers the barriers he and many others faced when trying to secure PrEP before 2021, when almost all private insurers had to start making the drug available at no cost to patients under the Affordable Care Act.
“It was exorbitantly expensive when I first attempted to access it,” the 39-year-old said, explaining that had he not had an insurance plan that covered PrEP, or at least part of it, the drug could’ve cost around $2,000 a month.
But PrEP might soon be beyond reach once again. The U.S. Supreme Court is gearing up to hear Kennedy v. Braidwood Management Inc., a case that could effectively sever access to cost-free preventive care services — including PrEP.
The court’s decision could have major implications for Black Americans, who are more likely than other demographic groups to underutilize the drug. Though Black Americans account for roughly half of the country’s HIV diagnoses, studies have shown that only about 12% of PrEP users are Black. A decision in the Braidwood case is expected this summer.
This uncertainty comes as extensive job cuts rattle federal health agencies, including sections responsible for HIV research. One infectious diseases expert remarked that this latest round of mass layoffs — some 10,000 workers were fired on Tuesday — “will go down as one of the darkest days in modern scientific history.”
In the years since it gained popularity, PrEP has helped to slow the spread of HIV — particularly among queer men, a population devastated by the virus in the 1980s and ’90s — and combat the stigma associated with it.
Some of the most recent data from the Centers for Disease Control and Prevention found that annual new HIV infections were 12% lower in 2021 — the year that the ACA mandate went into effect — than in 2017, and that this decline was driven in part by the increased use of PrEP among gay and bisexual men, who account for about two-thirds of new HIV infections.
Notably, the power of PrEP isn’t evenly felt. Most new infections in 2021 were among gay and bisexual men; Black men, however, made up the majority of that group. Likewise, Black women accounted for most new infections among women. These disparities suggest less awareness of and access to PrEP among Black Americans due to health care deserts and other structural barriers.
Still, health advocates are united in their calls for the Supreme Court to ease people’s ability to get on PrEP. Doing so, they stress, would advance the meaningful gains that have been made in recent years. Among Black gay and bisexual men, for instance, new infections were 27% lower in 2021 than in 2017, according to the CDC report.
To 75-year-old Joyce Turner Keller, who’s been living with HIV for nearly 25 years, eliminating the no-cost coverage mandate for PrEP would be like issuing a death sentence.
Based in Baton Rouge, Louisiana, she’s the founder and CEO of Aspirations, a nonprofit organization that connects those with HIV to care; the group also provides testing to those at higher risk of getting the virus, including Black women.
“What we need to do is make sure that all Americans are afforded every opportunity to have proper health care,” Keller told Capital B. “When we don’t get that, we die.”
The “whiplash” of possibly losing PrEP coverage
At its core, the case grapples with the constitutionality of the ACA’s no-cost requirement for a variety of preventive care services.
In 2020, two small Christian-owned businesses — Kelley Orthodontics and Braidwood Management Inc. — and a group of Texas residents went to federal court. They challenged the ACA mandate that insurers cover certain preventive care services, with some of the residents even claiming that drugs such as PrEP “encourage and facilitate homosexual behavior.”
Among other things, the plaintiffs argued that the structure of the U.S. Preventive Services Task Force violates the Constitution.
The task force is under the U.S. Department of Health and Human Services, and if it gives an A- or B-level recommendation to a preventive care service — PrEP falls into this group, as do heart medications and a number of cancer screenings — then, per the ACA, insurers must cover that service at no cost to patients.
In June 2024, the U.S. Court of Appeals for the 5th Circuit affirmed a 2023 District Court ruling that the ACA mandate — based on the task force’s recommendation — is unconstitutional under the Appointments Clause, because its members aren’t appointed by the president with Senate confirmation.
The federal government appealed the decision to the Supreme Court, which announced at the beginning of this year that it will review the constitutionality of the mandate. Oral argument is expected in April; a decision could be issued by late June or early July.
(Relying on the landmark 2014 case Burwell v. Hobby Lobby Stores Inc., the District Court in 2022 found that the mandate violates Braidwood’s religious freedoms, but the Supreme Court is zooming in on the narrow issue of the structure of the task force.)
To Mitchum, a civil rights attorney and the former director of federal advocacy and government affairs at The Trevor Project, the legal resistance to broadening access to PrEP coverage goes against the core mission of the country’s public health system, which is designed to stem the spread of disease and prevent premature deaths.
Not only that, he said, but the opposition to expanded access to PrEP is particularly galling to Black queer communities because of the lingering trauma of the AIDS crisis, which began in the early 1980s and, by the end of the decade, had become one of the leading causes of death among young Americans.
“I think a lot about our Black queer elders who lost friends and family to AIDS,” Mitchum said. “I can only imagine the whiplash of seeing preventive care services become available — services that could’ve saved people you love — and then having to deal with them possibly being taken away.”
George M. Johnson, a 39-year-old Black queer activist and the author of the 2020 “memoir-manifesto” All Boys Aren’t Blue, shared some of Mitchum’s sentiments, and also underscored the ongoing threat that HIV poses to Black communities.
“It’s still really an epidemic for us,” Johnson, who was diagnosed with HIV about 15 years ago, told Capital B. “I started talking about [my status] publicly because we know that there are a lot of people within Black communities who live with HIV and feel silenced. They don’t want to talk about it. And they don’t have to talk about it, but it’s important that some are as vocal as Phill Wilson and Ron Simmons were in the ’80s and ’90s. We need those voices today.”
Advocates fear a spike in infections
Neutralizing no-cost coverage of PrEP could be catastrophic, health experts and advocates warn.
A 2023 report from the Yale School of Public Health found that such a move could result in more than 2,000 preventable HIV infections a year. And Black Americans and other vulnerable groups would bear the brunt of that spike.
“The harms of the Braidwood ruling will be borne disproportionately by racial and ethnic socio-demographic groups at particularly high risk for HIV infection,” according to Meredithe McNamara, an assistant professor of pediatrics at the Yale School of Medicine and one of the report’s authors.
“The burden of new restrictions on access to PrEP will fall on Black and Latino gay and bisexual men, as well as transgender women, who already face significant barriers to HIV prevention and care,” she added. “The harms felt by indirect beneficiaries of PrEP, including children, must not be ignored.”
Keller, with the Louisiana nonprofit, emphasized that what’s important is boosting knowledge of and access to HIV prevention, not just treatment. Depending on the basis of the Supreme Court’s decision, the U.S. could return to a time, not too long ago, when only the latter was possible.
It’s her determination to move the country forward that motivates her to continue her grassroots work. She travels around the Pelican State — with a particular focus on rural areas — to provide HIV testing, connect people to care, and host conversations on issues ranging from HIV to sex to gender identity to domestic violence to racial bias in the health care system.
She worries that the latter may be at work in the persistent issues with access to care among Black Americans, especially Black women, who are too often overlooked in conversations about HIV and PrEP, even though they could benefit considerably from using the drug.
Research has shown that less than 2% of eligible Black cisgender women use PrEP, and that there’s similarly low uptake among eligible Black transgender women.
“We can’t forget to talk about Black women, who are the women most likely to acquire HIV,” Keller said. “Racism plays a large part in what we do or do not get in our community. And I’m not content with people in my community dying — dying because they’re not getting the resources they need.”
Mitchum also stressed the necessity of access, specifically the way that affordability deeply shapes whether someone is on PrEP: Just because a drug is technically available doesn’t mean that you can actually obtain it if the cost is too high.
Millions could lose guaranteed coverage, meaning that plans and employers would have to determine the preventive care services they would cover and the cost-sharing they would charge. This would likely result in irregular coverage that would only heighten the hurdles that Black Americans already face when it comes to safeguarding their health.
“No one is ‘accidentally’ on PrEP. It’s a consistent regimen that you have to talk with your medical provider about,” Mitchum said. “And if you think that you’re going to engage in sex that’s considered riskier, then the best thing you can do is protect yourself — on your terms and in your own way. The fact that people’s ability to protect themselves could be denied when we say that that’s what we want them to do? That just feels like a slap in the face.”
Great Job Brandon Tensley & the Team @ Capital B News Source link for sharing this story.
