Alexis Perkins thought her OB-GYN’s workplace in Atlanta could be simply the place to get a prescription for the kind of drug that reduces an individual’s threat of contracting HIV.
However throughout a current go to, the medical assistant who greeted her had not heard of the medicines generally known as preexposure prophylaxis, or PrEP, and he or she appeared uncomfortable discussing it, Perkins stated. Her supplier had heard of it however didn’t really feel assured prescribing it.
“She was no less than sincere sufficient to say that she was fascinated by it, however she didn’t actually know that a lot about it,” stated Perkins, a 25-year-old nurse, who determined to get on PrEP after taking part in a sexual well being schooling class and considering extra about her personal threat. She’s nonetheless looking for a supplier to put in writing her a prescription.
“If I wasn’t actually assured in myself, this might have been a really discouraging expertise,” Perkins stated.
PrEP is a vital device within the battle towards the ongoing HIV epidemic and, when taken as prescribed, is very efficient at stopping an infection from sexual contact or injection drug use.
However greater than a decade after the first PrEP drug was approved for the U.S. market, one of many teams that might profit most from the drugs isn’t taking them: Black girls, corresponding to Perkins, whose gender identification align with their intercourse assigned at start.
Medical doctors, public well being researchers, and people who present HIV remedy and prevention companies say long-standing, systemic components, corresponding to stigma and racism, are main boundaries to PrEP uptake amongst cisgender Black girls. Transgender Black girls face obstacles to PrEP uptake as nicely, particularly discrimination associated to their gender identification.
However many researchers deal with cisgender Black girls, who, they are saying, are sometimes ignored by the well being care system and face obstacles like: noninclusive advertising resulting in a lack of knowledge about who would profit, fewer remedy choices for girls than for males, and medical professionals cautious to prescribe it. These challenges are much more obvious throughout the South, which has the highest rates of recent HIV diagnoses within the nation.
Ladies had about a fifth of recent HIV infections in 2021, in line with current knowledge from the Facilities for Illness Management and Prevention. And cisgender Black girls made up an outsize share.
“If we don’t determine how we will change the system, we’re simply going to proceed to maintain failing Black girls,” stated Tiara Willie, an assistant professor of psychological well being on the Johns Hopkins Bloomberg Faculty of Public Well being.
The FDA has authorized three medicine to be used as PrEP: the drugs Descovy and Truvada, which additionally has a generic model, and the injectable Apretude. Descovy is newer and is available in a smaller pill than Truvada, which may make it more desirable. It was authorized for males and transgender girls who’ve intercourse with males, however wasn’t examined on folks assigned feminine at start.
That call pissed off HIV researchers and advocates, together with Rochelle Walensky, who labored on the Harvard College Middle for AIDS Analysis earlier than later main the CDC.
In a 2019 editorial, Walensky and her colleague Robert H. Goldstein criticized this “two-tier system,” during which males can get the medicine understanding it’s protected for them and with insurance coverage approval, however girls can’t.
Gilead Sciences, the corporate that makes Descovy, later announced it will conduct a trial centered on the drug’s use amongst cisgender girls. The corporate stated that research is ongoing, with knowledge anticipated in late 2024. The CDC, for its half, earlier this yr introduced an $8 million grant to fund research on methods to extend PrEP uptake amongst Black cisgender girls.
Black girls face the identical obstacles as different populations on the subject of PrEP, researchers stated, however many achieve this with fewer sources. Recent data from the U.S. Census Bureau reveals Black Individuals disproportionately dwell in poverty and girls are extra probably than males to dwell in poverty.
Taking PrEP requires common testing and physician visits to test for HIV an infection, which may current a “great barrier” to entry due to price and logistics, stated Michael Fordham, a program supervisor on the College of Alabama at Birmingham’s 1917 Clinic, the biggest HIV care facility within the state.
“We’re truly seeing PrEP sufferers extra incessantly than we see our sufferers residing with HIV which can be secure,” he stated.
The CDC updated its PrEP guidelines in 2021 to mirror the newest science and drug approvals, however the company has heard complaints from suppliers that they’re nonetheless too onerous, stated Robyn Neblett Fanfair, performing director of the company’s Division of HIV Prevention. She added the CDC is “transferring towards” tips which can be extra “well timed and nimble.”
Fanfair stated her division can be centered on decreasing the prices related to taking PrEP, which will be important. Simply beginning on PrEP can cost more than $2,000.
For now, the federal authorities mandates that non-public insurance policy cowl PrEP, at the same time as that rule faces a legal challenge. Nonetheless, in a current research, CDC scientists found some 50,000 folks had uncovered PrEP prices in 2018.
“Insurance policies that enhance entry to medical health insurance, corresponding to Medicaid enlargement, can enhance entry to PrEP,” the research stated. “This can be particularly impactful for the southern US,” the place many states have but to broaden the state-federal insurance coverage program for low-income folks underneath the Inexpensive Care Act.
However paying for PrEP isn’t the one barrier to entry, particularly within the South.
HIV and different sexually transmitted infections can nonetheless be uncomfortable for physicians and nurse practitioners to speak about within the “Bible Belt,” regardless of their prevalence, stated Anitra Walker, the vp of operations at Mercy Care, an Atlanta-area well being clinic that will get federal funding.
Social stigma not solely can forestall Black girls from speaking about PrEP with their associates, neighbors, and medical doctors, however it could actually seep into their home relationships, stated Mauda Monger, an assistant professor on the Faculty of Inhabitants Well being on the College of Mississippi Medical Middle.
“If their companion is the individual offering their housing, their meals, and sources for his or her youngsters, saying ‘I’m on PrEP’ overtly may very well put her livelihood in jeopardy,” stated Monger, noting additional that broaching the topic can put girls vulnerable to bodily hurt.
Growing PrEP uptake requires increasing entry to good jobs, inexpensive well being care, and secure housing, Monger stated, to permit Black girls to really feel extra empowered to take management of their well being.
Researchers additionally stated messaging about PrEP and the way it’s marketed wants to vary.
Willie, from Johns Hopkins, conducted focus groups in 2019 in Jackson, Mississippi, with Black cisgender girls, who stated they felt their experiences weren’t mirrored in promoting campaigns for PrEP.
If “it wasn’t simply homosexual males or transgender people who find themselves within the advertisements,” one participant stated, “then it will make everyone really feel like … it’s not only for particular folks.”
Researchers should “work upstream” to undo these perceptions as soon as they take maintain, stated Jessica Gross sales, an affiliate professor at Emory College’s Rollins Faculty of Public Well being.
Gross sales is partnering with Atlanta sexual well being nonprofit SisterLove to coach a small fleet of “influencers” to host casual conversations with neighborhood members and research their effectiveness in growing PrEP information, curiosity, and uptake amongst cisgender girls. Perkins, the nurse who was unable to get a PrEP prescription from her OB-GYN, is a part of the cohort.
SisterLove’s Wholesome Love curriculum, backed by the CDC, provides Black girls and their social teams the “freedom to carry conversations in a different way” than they might with medical suppliers, stated the group’s founder, Dázon Dixon Diallo.
Failing to make sure cisgender Black girls have entry to — and are literally fascinated by taking — PrEP will undermine the battle to convey the HIV epidemic underneath management, Diallo warned.
There’s “harm that needs to be undone,” she stated. “If we’re not centering Black girls on this epidemic, we’re getting nowhere to the tip.”