Prevalence of HIV Among Black Women

In 2020, Black women represented 10% of all new HIV diagnoses in the United States, while only representing 7% of the total population. Among transgender women, most new HIV diagnoses consisted of Black transgender women. Data conducted from 2019 to 2020 in seven major U.S. cities revealed that 62% of Black transgender women had HIV. In 2021, Black women represented about 60% of new HIV diagnoses among women in the United States, with the South having the largest percentage of the new diagnoses.

Although HIV infection rates in the United States have declined 8% from 2015 to 2019, the rate of new HIV infections among Black women has remained stable — suggesting little improvement for a community that is so disproportionately affected.

Data on PrEP Uptake

To reduce the chances of getting HIV, at-risk individuals can take a medication called PrEP (pre-exposure prophylaxis). PrEP may come in the form of daily oral medication or a shot referred to as a long-acting injectable (LAI). In a recent study, one-third of women would not consider PrEP regardless of injection or oral dosing. If forced to choose, the majority (55%) would prefer LAI PrEP.

Although PrEP, when taken as prescribed, reduces the risk of contracting HIV through intercourse by 99%, less than 2% of Black cisgender women use it. Despite the data showing that the HIV rate among Black transgender women in seven major U.S. cities is a staggering 62%, there is a lack of research that explores the relationship between Black transgender women and PrEP. In one of the few studies conducted that included Black and Latinx transgender women, research showed that while 87% of the women in the Baltimore and D.C. area had heard of PrEP, only 17% had ever taken it.

Barriers to HIV Prevention

While reasons for low uptake of PrEP may vary from person to person, the most common reasons for the low uptake among Black women include: (1) low levels of PrEP knowledge, (2) misinformation surrounding PrEP, (3) stigma related to PrEP use, and (4) limited access to PrEP.

In studies that focused on Black cisgender women specifically, they reported being unaware that women could use PrEP given the significant marketing towards men who have sexual contact with other men. For Black transgender women, mistrust of healthcare providers due to experiences of transphobia and concerns of PrEP interfering with their hormone usage have contributed to the low uptake of PrEP.

Even with prevention methods like LAI, which are only administered every eight weeks, barriers, such as access to clinics and the fear of disrobing to receive the shot, still exist. With the recent COVID-19 pandemic, the full impact of the virus on HIV is unknown, though there have been declines in HIV testing, diagnoses, and PrEP prescriptions.

A snapshot of Mississippi shows the reluctance of Black women. This study addresses the sociostructural influences that inhibit Black women’s deliberations about PrEP, especially in the South – a region that bears a disproportionate burden of HIV. The study found the following six broad areas of concern for Black women when deciding to take PrEP: 1) limited PrEP awareness, 2) low perceived HIV risk, 3) concerns about side effects, 4) concerns about costs, 5) limited marketing, and 6) distrust in the healthcare system. Some of these concerns are also reflected on a national basis and are not just limited to Mississippi, which is why there is a need for organizations that focus on this specific population.

Organizations That Help Black Women

To combat the barriers that Black women face in HIV prevention and to provide more focused and nuanced care to Black women, several organizations in the nation specifically serve Black women who have HIV.

One such organization is the Black Women First Initiative, which is supported by the Office of the Assistant Secretary for Health Minority HIV/AIDS Fund and the Health Resources and Services Administration’s HIV/AIDS Bureau. This initiative supports informed interventions for Black women who have HIV. Another example is The Eboni Study. Run by ViiV Healthcare (part of GSK), this phase 4 clinical study seeks to understand what works for Black women (cis or trans). The information collected during this study will then be shared with providers to help improve care of Black women in the future. Additionally, the Black Women’s Health Imperative aims to achieve health equity for Black women in the U.S. through health policy, education, research, knowledge, leadership development, and communications.

These are just a few of the many initiatives and organizations dedicated to helping Black women with HIV.

Efforts to Increase PrEP Access to Black Women

A federal initiative run by the U.S. Department of Health and Human Services, the Ending the HIV Epidemic (EHE) initiative uses six indicators to track the progress of the initiative goals — with PrEP coverage being one of the six. The initiative plans to increase PrEP coverage to 50% by 2025.

To help Black women raise PrEP uptake, community-based interventions that focus on getting PrEP care and education into Black communities through partnership are vital. Studies have shown that increasing Black women’s knowledge about PrEP in terms of misinformation and stigma while teaching about HIV risk perception has increased PrEP uptake. Researchers have also found that communications and marketing about PrEP need to change to reach Black women, with their current lack of relatability — resulting in less awareness and low uptake rates. Black women have also suggested ways to bridge these communication and marketing gaps, such as gathering testimonials from PrEP-engaged Black women, enacting empowerment strategies, and directly addressing provider biases. For LAI, allowing individuals the autonomy to self-inject and providing drop-in centers for patients without appointments were two alternatives identified that could increase the likelihood of PrEP usage.

Knowledge is not the only obstacle for Black women. Lower access to good jobs, affordable healthcare, and stable housing undermines Black women’s access to PrEP. Black women cannot feel empowered to take control of their health if they do not have access to jobs that will give them the necessary health care to afford PrEP or stable housing needed for good jobs. A provider barrier exists as well. Some providers lack confidence in prescribing PrEP, due to stigma or lack of knowledge about PrEP. While national efforts continue with the goal of reducing the overall rate of HIV infection by 90% in 2030, some issues remain for Black women. With the previously discussed lack of progress in reducing HIV infection rates for Black women from 2015 to 2019, the need to prioritize Black women’s health is stronger than ever.

DISCLAIMER: The views and opinions expressed in this piece are those of the authors and do not reflect the views of the O’Neill Institute.