By Sam Whitehead

Alexis Perkins thought her OB-GYN’s office in Atlanta would be just the place to get a prescription for the type of drug that reduces a person’s risk of contracting HIV.

But during a recent visit, the medical assistant who greeted her had not heard of the medicines known as pre-exposure prophylaxis, or PrEP, and she seemed uncomfortable discussing it, Perkins said. Her provider had heard of it but didn’t feel confident prescribing it.

“She was at least honest enough to say that she was interested in it, but she didn’t really know that much about it,” said Perkins, a 25-year-old nurse, who decided to get on PrEP after participating in a sexual health education class and thinking more about her own risk.

She’s still trying to find a provider to write her a prescription.

“If I wasn’t really confident in myself, this could have been a very discouraging experience,” Perkins said.

PrEP is a crucial tool in the fight against the ongoing HIV epidemic and, when taken as prescribed, is highly effective at preventing infection from sexual contact or injection drug use.

But more than a decade after the first PrEP drug was approved for the U.S. market, one of the groups that would benefit most from the medications isn’t taking them: Black women, such as Perkins, whose gender identity align with their sex assigned at birth.

Doctors, public health researchers, and those who provide HIV treatment and prevention services say long-standing, systemic factors, such as stigma and racism, are major barriers to PrEP uptake among cisgender Black women.

Transgender Black women face obstacles to PrEP uptake as well, especially discrimination related to their gender identity.

But many researchers focus on cisgender Black women, who, they say, are often overlooked by the health care system and face obstacles like: non inclusive marketing leading to a lack of awareness about who would benefit, fewer treatment options for women than for men, and medical professionals wary to prescribe it.

These challenges are even more apparent across the South, which has the highest rates of new HIV diagnoses in the country.

Women had about a fifth of new HIV infections in 2021, according to recent data from the Centers for Disease Control and Prevention. And cisgender Black women made up an outsize share.

“If we don’t figure out how we can change the system, we’re just going to continue to keep failing Black women,” said Tiara Willie, an assistant professor of mental health at the Johns Hopkins Bloomberg School of Public Health.

The FDA has approved three drugs for use as PrEP: the pills Descovy and Truvada, which also has a generic version, and the injectable Apretude. Descovy is newer and comes in a smaller tablet than Truvada, which can make it more desirable. It was approved for men and transgender women who have sex with men but wasn’t tested on people assigned female at birth.

”Researchers have to “work upstream” to undo those perceptions once they take hold, said Jessica Sales, an associate professor at Emory University’s Rollins School of Public Health.

Sales is partnering with Atlanta sexual health nonprofit Sister Love to train a small fleet of “influencers” to host informal conversations with community members and study their effectiveness in increasing PrEP knowledge, interest, and uptake among cisgender women. Perkins, the nurse who was unable to get a PrEP prescription from her OB-GYN, is part of the cohort.

SisterLove’s Healthy Love curriculum, backed by the CDC, gives Black women and their social groups the “freedom to hold conversations differently” than they would with medical providers, said the group’s founder, Dázon Dixon Diallo.

Failing to ensure cisgender Black women have access to — and are actually interested in taking — PrEP will undermine the fight to bring the HIV epidemic under control, Diallo warned.

There’s “damage that has to be undone,” she said. “If we’re not centering Black women in this epidemic, we are getting nowhere to the end.”(KFF/NK)