wo Black women sitting together and smiling, while one adjusts the patterned head wrap of the other.
Image credit: Junior REIS on Unsplash

Despite some progress in recent years, HIV infection rates in the United States disproportionately affect Black people—and cisgendered Black women in particular. But a new research project out of Emory University, dubbed “Eboni,” seeks to correct that imbalance.

According to the Centers for Disease Control (CDC) data, Black cisgendered women are substantially less likely to take—or be prescribed—drugs known as pre-exposure prophylaxis, or PrEP, which are effective in preventing new HIV infections.

In testing initiatives to increase the PrEP uptake rate among cisgendered Black women, Eboni aims to address the lack of HIV prevention through education campaigns aimed at Black women and, crucially, the healthcare providers that serve them.

Black cisgendered women are substantially less likely to take—or be prescribed—drugs known as pre-exposure prophylaxis. 

Black-led and Black-serving nonprofits are leading the efforts in some cases, like SisterLove, an Atlanta-based organization focused on women’s sexual health and whose “Healthy Love” curriculum includes education around PrEP. The curriculum, recently featured on NPR’s Morning Edition and Here and Now, works to train health “influencers” to hold outreach sessions among target communities.  

The effort aims to counteract a variety of factors that have led to lower use of PrEP by cisgendered Black women. Reporting for NPR, Kaiser Family Foundation Health News reporter Sam Whitehead writes:

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.

Black-led and Black-serving nonprofits are leading the efforts.The lower rate of PrEP use among Black women, in other words, to at least some extent represents a failure of the medical community to respond to disproportionate HIV infection rates among that population despite the ready availability of highly effective preventative medicine. 

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

The evidence is abundant that the system, as Willie puts it, is broken when it comes to cisgendered Black women.

Addressing the Underlying Causes

If we don’t figure out how we can change the system, we’re just going to continue to keep failing Black women.A 2022 review of studies of Black cisgendered women’s access to pre-exposure prophylaxis, published in Women’s Health, noted that less than 2 percent of that population of women take the medications, despite higher rates of HIV infection among the population and the outstanding efficacy of the drugs in preventing infection. 

The review “found multiple missed opportunities to increase women’s demand for pre-exposure prophylaxis and health care provider screening and referral for pre-exposure prophylaxis.”

Another 2022 study, published in the International Journal of Environmental Research and Public Health, explored the reasons for low uptake of PrEP among Black cisgendered women, finding that: “Black women had low levels of PrEP acceptability and high levels of misconceptions, inaccurate knowledge, and stigma towards PrEP,” and that “health care providers in our sample confirmed barriers of stigma, misconceptions, and knowledge among their patients coupled with difficulty accessing PrEP due to structural barriers.”

To what extent the misconceptions and stigma around PrEP originate with patients, as that study suggests, versus at the level of healthcare providers is an open question—one the Eboni project seeks to address through its education efforts. And it is not alone in this work.

Another campaign and toolkit by the Black AIDS Institute (BAI), dubbed Black Women and PrEP, also aims to increase access and uptake of PrEP among the same population. 

Citing 2008 data suggesting that of 500,000 Black women who could benefit from PrEP, only about 7,000 prescriptions were filled, the BAI notes that “this data underscores what has been known for a while: Black communities, especially Black women, are not getting crucial information about this trusted and effective HIV prevention tool.” 

Like all complex questions of health justice, the gap in uptake of PrEP by cisgendered Black women is nuanced and fundamentally intersectional. In his report for NPR, reporter Whitehead quotes Mauda Monger, an assistant professor at the School of Population Health at the University of Mississippi Medical Center, who notes that economic, social, and family dynamics may shape a woman’s attitudes toward PrEP: “If their partner is the person providing their housing, their food, and resources for their children, saying ‘I’m on PrEP’ openly may actually put her livelihood in jeopardy.” 

In other words, fully addressing the underlying causes for lower uptake rates of PrEP among Black cisgendered women likely requires digging beneath the surface of the issue to better understand and address the wider social factors shaping Black women’s access to potentially life-saving drugs.