We Need to Talk About Racism as a Barrier to HIV Prevention and Care for Black Women

HIV infection rates among Black women in the U.S. have fallen sharply over the past decade—but look closer, and the numbers still paint a troubling story. Black women remain disproportionately impacted by HIV, with a higher risk of infection than women of any other race or ethnicity. If current rates persist, according to Centers for Disease Control and Prevention (CDC) estimates, one in 48 Black women may be diagnosed with HIV in their lifetime—compared with one in 227 Hispanic women and one in 880 white women.

Now, new research is calling out structural racism as a long-ignored risk factor for HIV among Black women.

The study, published in the September/October issue of the Journal of the Association of Nurses in AIDS Care (JANAC), identified mistrust of the U.S. health care system, grounded in perceived structural racism, as a key factor preventing Black women from seeking out HIV prevention and treatment services.

The study’s findings are based on an examination of focus group discussions, in which participants—Black women living in low-income communities in the southern U.S.—shared their personal encounters with the health care system, with the idea that their experiences might help increase participation by Black women in HIV prevention programs. The researchers’ analysis of the discussions suggests that the women’s mistrust of medical providers, influenced by perceived structural racism and discrimination within the health care system, decreased their access to HIV care.

“This study, which grew out of the HIV Prevention Trials Network, sought to comprehend women’s views of factors that influence both women’s use of HIV prevention services and their personal sexual health behaviors,” said Schenita Randolph, Ph.D., M.P.H., RN, an assistant professor at Duke University School of Nursing and one of the study’s authors. (The study's co-author was Carol Golin, M.D., an associate professor at University of North Carolina’s Departments of Medicine and Health Behavior and Health Education.) “However, a consistent theme for the women was the perceived treatment they received based on the color of their skin and their social status.

“We do know that current clinical and research efforts tend to focus highly on low-income Black women who may not have high educational attainment and who may not have access to resources,” Randolph added. “Some studies have also shown that Black women of higher education levels and socioeconomic status are less likely to screen for HIV and STIs due to having a low perception of HIV risk among themselves and with health care providers. Limiting HIV prevention to only women from lower socioeconomic status can be of great detriment to all Black women, since Black women have smaller sexual networks, and there is a higher prevalence of HIV and STIs within Black communities in the U.S.”

Randolph and her team are considering using the study results to develop a salon-based intervention they hope will improve pre-exposure prophylaxis (PrEP) awareness, knowledge, and uptake among Black women of varied socioeconomic status living in the southern U.S.

For their efforts to be successful, they will need to overcome obstacles to health care for Black women that have existed for an extremely long time.

A Long Legacy of Racism

Mistrust in the health care system is not a new phenomenon, but one that has been apparent throughout U.S. history, stemming in large part from the medical mistreatment and abuse of Black people dating back to slavery. One well-known example, the Tuskegee Syphilis Study, subjected hundreds of poor Black men to an observational study without their informed consent and denied them access to treatment. As a result, many suffered serious complications or death.

Such abuse of power diminished Black communities’ trust in the medical community to the extent that, even today, Blacks are less likely to enroll in clinical trials and more wary of instructions and advice provided by doctors.

“Within communities, hesitation or fear regarding health care engagement is not irrational,” said Erin Bradley, Ph.D., M.P.H., the Linda Lentz Hubert Assistant Professor of Public Health at Agnes Scott College. “It is rooted in very real, documented ethical mistreatment, including examples from the not-so-distant past.” Bradley primarily studies HIV disparities affecting Black women, and in 2018, she co-authored a call to action for researchers to find ways to address social determinants of health and equity, including racism, that create and sustain disparities in HIV prevention and care.

Throughout recent history, Black women have endured particularly cruel experiments at the hands of medical providers, specifically as it pertains to sexual and reproductive health, including sexual violence and reproductive exploitation. Before the Civil Rights Act of 1964, legal segregation in health care was commonly practiced, as were unethical yet federally funded reproductive health procedures, such as forced sterilizations.

While Black women are no longer subjected to the medical experiments and practices originated during slavery, many studies suggest that Black women, independent of socioeconomic status, still are more likely than white women to experience discrimination, receive substandard medical care, and undergo unnecessary surgeries, such as hysterectomies.

An Ignored Public Health Issue

For Black women, the longstanding effects of racism and discrimination within the U.S. health care system, compounded by the deterrent effect of medical mistrust, creates added challenges to reducing their rates of HIV infection.

In multiple studies exploring HIV prevention, Black women reported medical mistrust as a barrier to discussing or accessing HIV prevention interventions such as PrEP. In a recent study conducted in Chicago, only 30% of HIV-negative Black women with a sexually transmitted infection reported that they had heard of PrEP—and most of those who knew about PrEP had learned of it through advertisements, rather than a medical provider.

These findings are not all that surprising given that the majority of available data on PrEP uptake focuses on gay men. As was noted at a health care conference earlier this year, a recent literature search on PrEP revealed that 726 PubMed articles were dedicated to gay men, compared to 26 articles that named Black women.

How the Health Care System Can Earn the Trust of Black Women

Understanding the race-based inequalities and obstacles Black women face in accessing prevention and care is critical to stemming the HIV epidemic in the U.S. According to Maya Merriweather, a project manager at Black AIDS Institute, that work starts with providers.

“Black women have a historical memory of medical mistrust and that definitely shapes the relationship Black women have with health care providers,” Merriweather said. “Providers need to be part of educating Black women on HIV prevention and actively dismantling the barriers that exist for Black women.”

Such barriers include misogynoir and lack of inclusion in communications around preventing and treating HIV, Merriweather added. “When people are not explicitly included, then they are implicitly left out. Actual visibility is so important to reducing the spread of HIV.”

Bradley, of Agnes Scott College, agrees that providers need to do a better job providing HIV care that is both culturally relevant and takes into account the effects of structural racism and discrimination. “For patient-provider interactions, listening to, believing, and responding to Black women's concerns is paramount,” Bradley said. “This will help build trust.”

At the structural level, medical institutions need to honestly assess and address explicit and implicit bias for all staff members and leadership—and seek out trusted voices from Black communities, Bradley added. “A collaborative approach that respectfully involves community members and values their expertise will be key to sustainable HIV prevention and care efforts.”

As far as the research community is concerned, a multi-level solution will be required to address trust issues as they attempt to explore HIV prevention efforts among Black women, said Randolph, coauthor of the JANAC study. “Increasing participation in clinical trials, disseminating research findings back to communities, and developing sustainability plans that will allow the work to continue past the funding opportunity—these are just a few ways to potentially improve trust.”

Randolph also recommends that funding agencies and scientific reviewers undergo racial equity training to ensure that proposals are reviewed through an equity lens and are informed by the scientific evidence supporting the impact of racism on HIV risk, transmission, treatment initiation, adherence, and access to services.