Alexis Perkins thought her ob/gyn’s office in Atlanta was the perfect place to pick up a prescription for a type of drug that reduces her risk of contracting HIV.
But during a recent visit, Perkins said the medical assistant who greeted her had never heard of the drug, known as pre-exposure prophylaxis, or PrEP, and seemed uncomfortable talking about it. . Her health care provider had heard about it but didn’t have the confidence to prescribe it.
“She could at least honestly say that she was interested in it, but she didn’t really know much about it,” said Perkins, a 25-year-old nurse. She took sexual health education classes and started thinking more about her own risks. She is still looking for a health care provider to write her a prescription.
“If I didn’t really believe in myself, this could have been a very discouraging experience,” Perkins said.
PrEP is an important tool in the fight against infectious diseases. The ongoing HIV epidemic When taken as prescribed, it is very effective in preventing infections from sexual contact and injection drug use.
However, more than ten years have passed since then, First PrEP drug approved In the case of the US market, one of the groups that would benefit most from the drug is those not taking the drug. For black women like Perkins, their gender identity matches the sex they were assigned at birth.
Physicians, public health researchers, and those providing HIV treatment and prevention services believe that long-standing systemic factors such as stigma and racism pose significant barriers to PrEP uptake for cisgender black women. Says.transgender black woman face obstacles PrEP uptake, particularly discrimination related to gender identity, also has an impact.
However, many researchers have focused on cisgender black women, who are often ignored by the health care system and face obstacles such as: There is a lack of awareness about who benefits from non-inclusive marketing, women have fewer treatment options than men, and medical professionals are cautious about prescribing it. These challenges are becoming more pronounced across the South. highest rate Number of people newly diagnosed with HIV in the country.
women had About one-fifth New HIV infections in 2021, according to recent data from the Centers for Disease Control and Prevention.and cisgender black women. occupied a large share.
“If we don’t find a way to change the system, it will continue to fail Black women,” said Tiara Willey, assistant professor of mental health at Johns Hopkins Bloomberg School of Public Health.
The FDA has approved three drugs for use as PrEP: Descovy, a generic version of Truvada, and Apritude, an injectable drug. Descovy is new and comes in a smaller tablet than Truvada; more desirable. It was approved for men and transgender women who have sex with men, but not for those assigned female at birth.
The decision frustrated HIV researchers and advocates, including Rochelle Walensky, who worked at Harvard University’s AIDS Research Center before later leading the CDC.
in 2019 editorialWalensky and his colleague Robert H. Goldstein argue that this “two-tier system” allows men to obtain drugs they know are safe for them and with insurance approval, but women cannot. criticized.
Gilead Sciences, the company that manufactures Descovy, It was announced later The trial will focus on drug use among cisgender women. The company said the study is ongoing and data is expected by the end of 2024. The CDC released the following report earlier this year: $8 million grant Funding research on strategies to increase PrEP uptake among cisgender Black women.
Researchers say Black women face the same obstacles to PrEP as other populations, but often do so with fewer resources. recent data Black Americans disproportionately live in poverty, with women more likely than men to live in poverty, according to the U.S. Census Bureau.
Michael Fordham, program manager at the 1917 Clinic, the largest HIV clinic at the University of Alabama at Birmingham, said getting PrEP requires regular testing and visits to a doctor to check for HIV infection, but the cost and logistics can be overwhelming. He said there could be “significant barriers” to access. Nursing homes in the state.
“We actually see patients on PrEP more often than we see patients with stable HIV infection,” he said.
CDC Updated PreEP guidelines Regulations will begin in 2021 to reflect the latest science and drug approvals, but the agency still sees a burden from health care providers, said Robin Neblett-Fanfair, acting director of the agency’s HIV prevention division. He says he has heard complaints that there are too many. He added that the CDC is “moving toward” more “timely and agile” guidelines.
Fanfair said her department is also focused on reducing costs associated with taking PrEP, which can be a significant expense. Just started PrEP Can cost more than $2,000.
For now, the federal government requires private insurance plans to cover PrEP. facing legal challenge. However, recent research shows that discovered by CDC scientists In 2018, approximately 50,000 people disclosed the cost of PrEP.
“Policies that increase access to health insurance, such as Medicaid expansion, may improve access to PrEP,” the study said. “This could particularly impact the southern United States,” as many states have not yet expanded state federal insurance programs for low-income people under the Affordable Care Act.
But paying for PrEP isn’t the only barrier to access, especially in the South.
Anitra Walker, vice president of operations at Atlanta-area clinic MercyCare, said that despite the prevalence of HIV and other sexually transmitted diseases, it remains uncomfortable for doctors and nurses to speak in the “Bible Belt.” He said that there are cases. federal funds.
Moda Monger, an assistant professor in the Department of Population Health at the University of Mississippi Medical Center, said social stigma not only prevents Black women from talking about PrEP with friends, neighbors and doctors, but also permeates relationships within the household. He said there is a possibility. .
“If your partner is the one who provides housing, food, and resources for your children, openly saying, ‘I’m on PrEP,’ could actually put her livelihood at risk.” ”, Monger said, noting that bringing up the topic could jeopardize women’s positions. There is a risk of physical harm.
Increasing PrEP uptake requires expanding access to good jobs, affordable health care, and stable housing so that Black women feel more empowered to take control of their health. Monger said.
The researchers also said the messaging around PrEP and how it is sold needs to change.
Willie from Johns Hopkins University Conduct a focus group In 2019, she held a rally with cisgender black women in Jackson, Mississippi. They said they felt their experiences were not reflected in PrEP advertising campaigns.
One participant said, “If it wasn’t just gay people or transgender people in the ad, everyone would feel like it’s not just for one person.”
Jessica Sales, an associate professor at Emory University’s Rollins School of Public Health, said that once such perceptions take hold, researchers need to “work upstream” to reverse them.
Sales has partnered with SisterLove, a sexual health nonprofit in Atlanta, to train a small number of “influencers” who will host informal conversations with community members to promote PrEP among cisgender women. We study its effectiveness in increasing knowledge, interest, and dissemination. Perkins, a nurse who was unable to get her PrEP prescription from her gynecologist, is also part of this cohort.
SisterLove’s healthy love curriculum is With support from the CDCDazon Dixon Diallo, the group’s founder, said it gives Black women and their social groups “the freedom to have a different conversation” than health care providers.
Diallo warned that the fight to control the HIV epidemic will be undermined if we fail to ensure that cisgender black women have access to and are actually interested in receiving PrEP.
She says there is “damage that needs to be undone.” “If we don’t center Black women in this epidemic, we will never reach the end.”
