Forty years after the start of the HIV / AIDS epidemic, black women continue to bear the heaviest HIV burden among women.
Although black women represent only 13% of the female population, they accounted for more than half of HIV diagnoses among all women in the United States in 2018, according to US Centers for Disease Control and Prevention data. White women, who represent 62% of the female population, accounted for 21% HIV diagnoses.
The theme for this year’s World AIDS Day included end inequalities in the management of HIV and AIDS. But addressing inequalities will require examining their root causes. In the United States, the most important reasons for these disparities are structural and systemic racism.
I am the co-founder and director of a research center at Columbia University, the Social Intervention Group. Over the past 30 years, more than a thousand black women [living with or at risk for HIV] participated in the centre’s studies on causes and dynamics of HIV, substance abuse and gender-based violence. These included intervention studies put new strategies into practice and assess their impacts.
We have identified three approaches that can help improve the health of this population of women at risk, as well as their access to health care.
Address contexts and life experiences
Many women who participated in our studies told us that their health care providers rarely pay attention to their life context.
The life context includes racism, discrimination, poverty, a history of homelessness, incarceration, domestic violence, stigma and trauma. Black women often lack of integrated health services to solve these concomitant problems, and simultaneously their needs are often ignored by their health care providers, which means they are not getting the treatment they need.
The data confirm the personal experiences of these women. Black women are almost three times more likely to live in poverty and to die from pregnancy-related causes than white women. They are also more likely to work in low-paying jobs that do not offer health benefits.
To help overcome these inequalities, the Social Intervention Group has developed an intervention titled “Empowering African American Women on the Path to Health,” or E-WORTH. This study was designed by and for black women to reduce HIV transmission and improve access to care, and it assessed whether its methods improve participants’ health outcomes in practice.
Culturally Appropriate HIV Care
A total of 352 women participated in our E-WORTH intervention study, which began in November 2015 and ended in August 2019. The intervention included a one-hour counseling and individual HIV testing session, and four weekly 90-minute group sessions.
These sessions included awareness of HIV and other risks of sexually transmitted infections, appropriate condom use, sexual negotiation skills, setting risk reduction goals, increasing social support and linkages to sex. services, intimate partner violence screening, safety planning and referral to violence prevention services.
Participants had the opportunity to discuss their experiences with barriers to health care and other services, and how racism has affected their access to services.
These unique intervention components have had a positive effect. We found at the 12-month follow-up that compared to women in a one-session HIV testing intervention, women in the five-session E-WORTH intervention were 54% less likely to test positive for HIV. any sexually transmitted infection. They also reported 38% fewer acts of vaginal or anal sex without a condom.
The results suggest that the implementation of an HIV / sexually transmitted infections intervention that is culturally appropriate and designed for black women shows promise in reducing the disproportionate burden of these infections in this population.
Research shows that black women often do not receive adequate care because caregivers often do not believe their pain is real. Several E-WORTH participants reported that in their overall experiences with the health care system, âno one ever believes meâ.
In contrast, due to the trust and respect shown by the facilitators and study staff, the women participating in E-WORTH reported feel heard and believed.
These same women also told us that sometimes clinical staff blamed them for contracting HIV and not discussing or offering treatment and care options, which prevents them from accessing or staying in care.
To address the context of life, E-WORTH is closely linked to the Afrocentric themes of trauma and resilience. These draw on the historical and lived experiences of black Americans, from slavery in Jim Crow to the mass incarceration of blacks. Multimedia footage in the sessions is intentionally permeated with conversations about historical oppression, race and culture as well as systemic issues such as the over-policing of black communities and disproportionate punishment laws.
The facilitators of the intervention sessions led discussions about how intersecting identities of race and ethnicity are at the heart of the HIV epidemic among black women. The scripts used by the facilitators featured Afro-centric language, based on comments from previous focus groups of black women, including the names of the characters. Afrocentric graphics were used, such as purple for royalty.
A need for black doctors and training in structural racism
Another recent study suggests that the creation of medical education programs at historically black colleges and universities could increase the number of black doctors. This supports other studies confirming the importance of these schools expanding the ranks of black doctors in the United States.
However, increasing the number of black suppliers is only part of the solution. Less than half of U.S. medical schools provide some sort of education or training on addressing structural racism and racial disparities in health care.
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In recent years, medical schools as well as allied health schools have become more committed to training the next generation of healthcare professionals to fight racism.
While research has shown that structural racism is a powerful driver of health disparities, a there is a big gap in the literature on impact of these trainings on the practices of medical personnel and the health outcomes of their patients. This highlights the need to pay more attention to this type of research.
The foundations of racism in the medical system
At the end of 2020, the American Medical Association declared structural racism a threat to public health and underscored the urgent need to prepare US health workers to address it.
“Without systemic and structural change, health inequalities will continue to exist”, wrote Willarda V. Edwards, WADA Board Member. âDeclaring racism as an urgent threat to public health is a step in the right direction to advance equity in medicine and public health. “
The Social Intervention Group continues to develop and evaluate solutions to address the HIV crisis among black women. Our research results suggest that when these women are actively involved in all stages of their health services and research, they can improve their health and their lives. But it will require health professionals to address the structural racism inherent in the health system as well.