Engaging Black Women in HIV Prevention and Testing

Sponsored by the HHS Office of Minority Health, in partnership with the Office of the Assistant Secretary for Health (OASH) Office of Infectious Disease and HIV/AIDS Policy (OIDP), the Innovative Community Engagement Strategies to Reduce HIV-related Stigma and Disparities Challenge (the Challenge) sought innovative and effective approaches for community engagement and mobilization to reduce HIV stigma and improve pre-exposure prophylaxis (PrEP) and antiretroviral therapy (ART) utilization among racial and ethnic minority individuals who are at increased risk for HIV infection or are people with HIV. The Challenge advanced through three phases and awarded a total of $760,000. It received more than 80 submissions and selected three winners, awarding each of the Phase 3 winners a $60,000 prize to advance their work.

HIV.gov is sharing the work of the Edson College of Nursing and Health Innovation at Arizona State UniversityExit Disclaimer, one of the Phase 3 winners.

The Intervention

The Centers for Disease Control and Prevention’s HIV Surveillance Supplemental Report notes that at year-end 2022 an estimated 152,700 Black women had HIV. Among all women, 47% of estimated new HIV infections were among Black women. Recognizing the underrepresentation of women in messaging promoting pre-exposure prophylaxis (PrEP), an important HIV prevention tool, Alyssa Robillard, PhD, MCHES, an Associate Professor in the Edson College of Nursing and Health Innovation at Arizona State University, one of three Phase 3 winners, spoke with us about her work to promote HIV testing as a gateway to PrEP for Black women.

Dr. Robillard is trained in health education and promotion and focuses on addressing health disparities, particularly within Black communities. With support from a Community Advisory Board (CAB), Dr. Robillard developed a scripted, culture-centric single story based on a narrative shared by a woman living with HIV, “I Knew Better.” It portrays a Black woman and her male partner’s initial use of condoms, followed by a decision to abandon them and, ultimately, her HIV diagnosis.

Regarding the inspiration for her work, Dr. Robillard shared, “throughout the HIV epidemic, we have seen the disproportionate impact of HIV in Black communities that is driven by HIV stigma and discrimination, as well as other structural barriers. Regarding Black women, I became interested in figuring out how tailored interventions using stories can provide individual, social, and structural support for HIV prevention, and also support women living with HIV.” Dr. Robillard then highlighted the approach to the work which is rooted in narratives.

The Impact

“I see stories as a way of engaging and educating people to promote behavior change,” Dr. Robillard shared. She also highlighted the collaborative approach of the work. It includes community members and partners, a playwright and filmmaker, as well as oversight and input of the CAB which consists primarily of Black women with lived experience, case managers, outreach workers, advocates, and those with storytelling and social media expertise.

“I recognize and sincerely appreciate the importance of community engagement for work like this—it can’t be done well without it and is an integral, necessary part of addressing disparities and reducing HIV stigma,” Dr. Robillard offered. Thanks to the Challenge grant, the scripted story is now a 30-minute film and used as a central part of the social media-based intervention.

Dr. Robillard noted that Black women, particularly in southern states, are invited to join a private Facebook group to see the story presented in a serial fashion. They also receive information normalizing awareness of one’s HIV status, an HIV testing locator, and information about PrEP as a means of engaging in self-care. The story also includes content with encouraging messaging that Black women with HIV can live and thrive despite their diagnosis.

Next Steps

Dr. Robillard shared that the film won the Multimedia Materials Award for the annual Public Health Education and Health Promotion Public Health Materials contest at last year’s American Public Health Association conference. She is currently working on a research proposal based on the work regarding the Challenge, which will focus on evaluating a story-based intervention to promote HIV testing and PrEP for Black women in the South to understand the impact of storytelling better.

We encourage you to learn more about:

• The Challenge
• The HHS Office of Minority Health
• The OASH Office of Infectious Disease and HIV/AIDS Policy