Lack of PrEP Among Black Cisgender Women

One of the most effective tools to prevent HIV, known as PrEP (pre-exposure prophylaxis), is not accessible to many Black cisgender women, according to an article by KFF Health News. 

The first PrEP agent, Truvada (emtricitabine/tenofovir disoproxil fumarate), was approved by the Food and Drug Administration in 2012. However, research has found that less than 2% of eligible Black cisgender (gender identity aligned with their sex assigned at birth) women are prescribed PrEP, a group at high risk for HIV.

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According to KFF Health News:

“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.”

A woman featured in the KFF article, Alexis Perkins, RN, knew about the drug and went to her OB-GYN’s office to get a prescription for PrEP, only to find that the medical assistant working with her knew nothing about the medication. The OB-GYN that Perkin’s saw responded to her request by noting that while they knew about PrEP, they lacked the confidence to prescribe it.  As of October 13, 2023, Ms Perkins had still not been able to find a prescriber, according to KFF.

Cisgender women have emerged as an area of focus for researchers because of findings that they are likely to be overlooked by health care systems for HIV treatment and the related uninclusive marketing of PrEP. The result, according to KFF, has been fewer treatment options for women, as well as providers lacking the knowledge to prescribe the medication to this group of patients.

Of note, this appears to be more common in Southern states in the US, where HIV diagnosis rates greatly exceed the rate of any other US region. According to the Centers for Disease Control and Prevention, of the 30,635 new HIV diagnoses in the US in 2020, 51% were among adults and adolescents living in the South. By comparison, the percentage of HIV diagnoses in the Midwest was 13%; Northeast, 14%; West, 21%; and in dependent areas (American Samoa, Guam, the Northern Mariana Islands, Puerto Rico, the Republic of Palau, and the US Virgin Islands) 1%.

In 2021, Black people accounted for 40% of the estimated HIV infections despite making up just 12% of the US population. Women made up 20% of new HIV infections in the US, and cisgender Black women made up a significant share of those infections. 

KFF’s article notes related dissatisfaction among HIV researchers and advocates for equitable HIV treatment. An example cited is the decision by the FDA to approve a new PrEP medication for men and transgender women, while not testing it, and therefore not approving it, for cisgender women. Former CDC leader Rochelle Walensky, MD, MPH, and colleague Robert Goldstein, MD, PhD, wrote a critical article titled “Where Were the Women? Gender Parity in Clinical Trials,” describing the omission and noting that it was not consistent with FDA policy about gender-equity in research.

KFF ended their piece with this ominous message from Dázon Dixon Diallo, founder of SisterLove’s Healthy Love program:

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, warned Ms Diallo. 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.”