Alexis Perkins thought her OB-GYN鈥檚 office in Atlanta would be just the place to get a prescription for the type of drug that reduces a person鈥檚 risk of contracting HIV.
But during a recent visit, the medical assistant who greeted her had not heard of the medicines known as preexposure prophylaxis, or PrEP, and she seemed uncomfortable discussing it, Perkins said. Her provider had heard of it but didn鈥檛 feel confident prescribing it.
鈥淪he was at least honest enough to say that she was interested in it, but she didn’t really know that much about it,鈥 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鈥檚 still trying to find a provider to write her a prescription.
鈥淚f I wasn’t really confident in myself, this could have been a very discouraging experience,鈥 Perkins said.
PrEP is a crucial tool in the fight against the 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 for the U.S. market, one of the groups that would benefit most from the medications isn鈥檛 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 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: noninclusive 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 of new HIV diagnoses in the country.
Women had of new HIV infections in 2021, according to recent data from the Centers for Disease Control and Prevention. And cisgender Black women .
鈥淚f we don’t figure out how we can change the system, we鈥檙e just going to continue to keep failing Black women,鈥 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 . It was approved for men and transgender women who have sex with men, but wasn鈥檛 tested on people assigned female at birth.
That decision frustrated HIV researchers and advocates, including Rochelle Walensky, who worked at the Harvard University Center for AIDS Research before later leading the CDC.
In a , Walensky and her colleague Robert H. Goldstein criticized this 鈥渢wo-tier system,鈥 in which men can get the medication knowing it鈥檚 safe for them and with insurance approval, but women can鈥檛.
Gilead Sciences, the company that makes Descovy, it would conduct a trial focused on the drug鈥檚 use among cisgender women. The company said that study is ongoing, with data expected in late 2024. The CDC, for its part, earlier this year announced an to fund studies on strategies to increase PrEP uptake among Black cisgender women.
Black women face the same obstacles as other populations when it comes to PrEP, researchers said, but many do so with fewer resources. from the U.S. Census Bureau shows Black Americans disproportionately live in poverty and women are more likely than men to live in poverty.
Taking PrEP requires regular testing and doctor visits to check for HIV infection, which can present a 鈥渢remendous barrier鈥 to access because of cost and logistics, said Michael Fordham, a program manager at the University of Alabama at Birmingham鈥檚 1917 Clinic, the largest HIV care facility in the state.
鈥淲e’re actually seeing PrEP patients more frequently than we see our patients living with HIV that are stable,鈥 he said.
The CDC in 2021 to reflect the latest science and drug approvals, but the agency has heard complaints from providers that they鈥檙e still too onerous, said Robyn Neblett Fanfair, acting director of the agency鈥檚 Division of HIV Prevention. She added the CDC is 鈥渕oving toward鈥 guidelines that are more 鈥渢imely and nimble.鈥
Fanfair said her division is also focused on reducing the costs associated with taking PrEP, which can be significant. Just starting on PrEP .
For now, the federal government mandates that private insurance plans cover PrEP, even as that rule . Still, in a recent study, some 50,000 people had uncovered PrEP costs in 2018.
鈥淧olicies that increase access to health insurance, such as Medicaid expansion, can improve access to PrEP,鈥 the study said. 鈥淭his may be especially impactful for the southern US,鈥 where many states have yet to expand the state-federal insurance program for low-income people under the Affordable Care Act.
But paying for PrEP isn鈥檛 the only barrier to access, especially in the South.
HIV and other sexually transmitted infections can still be uncomfortable for physicians and nurse practitioners to talk about in the 鈥淏ible Belt,鈥 despite their prevalence, said Anitra Walker, the vice president of operations at Mercy Care, an Atlanta-area health clinic that gets federal funding.
Social stigma not only can prevent Black women from talking about PrEP with their friends, neighbors, and doctors, but it can seep into their domestic relationships, said Mauda Monger, an assistant professor at the School of Population Health at the University of Mississippi Medical Center.
鈥淚f their partner is the person providing their housing, their food, and resources for their children, saying 鈥業’m on PrEP鈥 openly may actually put her livelihood in jeopardy,鈥 said Monger, noting further that broaching the subject can put women at risk of physical harm.
Increasing PrEP uptake requires expanding access to good jobs, affordable health care, and stable housing, Monger said, to allow Black women to feel more empowered to take control of their health.
Researchers also said messaging about PrEP and how it鈥檚 marketed needs to change.
Willie, from Johns Hopkins, in 2019 in Jackson, Mississippi, with Black cisgender women, who said they felt their experiences weren鈥檛 reflected in advertising campaigns for PrEP.
If 鈥渋t wasn鈥檛 just gay men or transgender people who are in the ads,鈥 one participant said, 鈥渢hen it would make everybody feel like 鈥 it鈥檚 not just for specific people.鈥
Researchers have to 鈥渨ork upstream鈥 to undo those perceptions once they take hold, said Jessica Sales, an associate professor at Emory University鈥檚 Rollins School of Public Health.
Sales is partnering with Atlanta sexual health nonprofit SisterLove to train a small fleet of 鈥渋nfluencers鈥 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鈥檚 Healthy Love curriculum, , gives Black women and their social groups the 鈥渇reedom to hold conversations differently鈥 than they would with medical providers, said the group鈥檚 founder, D谩zon Dixon Diallo.
Failing to ensure cisgender Black women have access to 鈥 and are actually interested in taking 鈥 PrEP will undermine the fight to bring the HIV epidemic under control, Diallo warned.
There鈥檚 鈥渄amage that has to be undone,鈥 she said. 鈥淚f we’re not centering Black women in this epidemic, we are getting nowhere to the end.鈥
