About ISCI’s Supplement Project Spotlight Series: This series does a deep dive on research and findings from supplement projects funded by the National Institutes of Health (NIH) as part of the Ending the HIV Epidemic in the United States (EHE) Initiative. Keep reading to learn more about this process and click here for additional information on supplement project funding.
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HIV transmission disproportionately affects racial and ethnic minorities. In the United States, Black and African American people (hereafter referred to as Black communities) are only 12 percent of the population but comprised 37 percent of people living with HIV in 2022, the highest rate of any single race or ethnicity. The intersection of racism, longstanding systemic inequities, residential segregation, and social and economic marginalization are just some of the factors that collectively reduce access to HIV prevention and treatment for Black communities.
Disparities in HIV acquisition are even greater for Black women. HIV incidence among Black women is ten times higher than that of white women and four times higher than that of Latina women. Black women also make up the majority (50 percent) of new HIV diagnoses among women, when only 15 percent of all women in the United States are Black.
In Mecklenburg County, North Carolina, these racial and gender disparities are prominent, but they are not inevitable. The 2021 EHE supplement project, “Enhancing Strategies to Engage Providers in Efforts to Eliminate HIV: Project EnSTEP,” led by Katryna McCoy, PhD, FNP, through the University of North Carolina’s Center for AIDS Research (CFAR), focuses on engaging Black cisgender women in HIV prevention services in Mecklenburg County. McCoy’s project achieves this through two primary means: 1) implementing community-derived pre-exposure prophylaxis (PrEP) awareness campaigns tailored to the needs of Black cisgender women, and 2) developing implementation strategies to enhance healthcare providers’ communication about HIV prevention with Black cisgender women.
While Project EnSTEP is largely focused on Black women, McCoy also wanted to address disparities that affect access to HIV care for all people in Mecklenburg County. To do this, McCoy and the Project EnSTEP team implemented an incentive-based strategy with “testing tickets,” vouchers that reimbursed transportation costs when receiving HIV care and prevention services to help address financial barriers to care.
Together, the project’s three elements provide valuable insight into how implementation strategies can address disparities in HIV care and improve access to HIV prevention resources for community members and researchers alike.
The first element of Project EnSTEP focused on developing a PrEP awareness campaign to increase HIV prevention knowledge for Black women in Mecklenburg County.
“There is so much emphasis on HIV among men who have sex with men that only a few interventions focus on the needs of women, and even fewer on Black women,” said McCoy. “There is not enough emphasis placed on informing Black women of risk factors for acquiring HIV and available preventative measures like PrEP.”
To create the initial campaign materials, McCoy and the Project EnSTEP team worked with the Mecklenburg County Public Health Department to identify areas of need. With the help of CrumbSnatchers Marketing Agency, which specializes in multicultural strategies to reach diverse audiences, they piloted three billboard designs and an ad in a print magazine, all of which used images of Black women to promote PrEP.
The piloted campaign materials reached a large audience, with an estimated 1.6 million people encountering the billboards and approximately 75,000 seeing the magazine ad.
Learn More: Additional Projects
To address gender gaps, the NIH issued a call for supplements in 2020 to support implementation research on PrEP for cisgender, heterosexual women and funded eight projects. Additional projects like Project EnSTEP were also funded. Learn more about these projects through ISCI’s Project Dashboard.
The piloted campaign materials reached a large audience, with an estimated 1.6 million people encountering the billboards and approximately 75,000 seeing the magazine ad.
Now that the Project EnSTEP team understood how the materials would perform, they wanted to further tailor them by gathering feedback from the women they were trying to reach. They recruited community members from across Mecklenburg County, ages 18 to 66, to participate in focus groups at three stages.
The first focus group gathered information on the participants’ experiences and perceptions as it relates to HIV. The second asked specific questions about what an effective PrEP awareness campaign could look like, and what changes should be made to the initial campaign materials. The third focus group included a presentation of updated campaign materials that applied the participants’ feedback and suggestions, followed by a conversation on what they liked and what they thought could still be improved.
“The participants in the focus groups told us what types of wording, colors, pictures, and even slogans should be included in the PrEP awareness campaign. They really helped my team develop a more tailored approach to the campaign materials to increase Black women’s awareness of the medication,” McCoy said.
The revised campaign materials more accurately reflected the focus group participants’ lived experiences and increased conversations around how HIV affects Black women.
“During the final focus group, we could see that more women were aware of PrEP. The success of the campaign was because of the focus group participants – they helped improve awareness of HIV for other women and for themselves, too,” said McCoy. “We also found that the campaign materials helped start conversations on HIV beyond men who have sex with men. There’s been an internal shift in healthcare agencies to focus more on women, particularly women of color.”
Specific findings from the revised campaign materials will be discussed in more detail in an upcoming paper by McCoy and the Project EnSTEP team.
The focus group participants also provided insight into other areas where communication on HIV prevention was lacking, and specifically talked about how often they had conversations with their healthcare providers on HIV prevention—almost never.
Approximately 90 percent of the women in the focus group said their healthcare providers never even mentioned HIV during their yearly physical exams. When you live in a place that has high HIV incidence like Mecklenburg County, these things need to be at the forefront…Providers need to have upfront conversations on HIV prevention, especially with Black women.”
– Katryna McCoy
This insight helped inform the semi-structured interviews the Project EnSTEP team conducted with healthcare providers, with the goal of learning how different healthcare providers approach conversations on HIV with Black women. The team interviewed ten providers who prescribed PrEP and ten providers who had not prescribed PrEP, along with ten clinic administrators. The interviewees included physicians, nurse practitioners, physician assistants, and pharmacists.
“When we interviewed the providers, we found that the biggest barrier was not that they didn’t want to talk about HIV, but rather that they didn’t have the time for these conversations because they were so heavily burdened with patient care needs,” said McCoy. “We also found that some providers were just never trained on how to prescribe PrEP.”
Other barriers for providers included a lack of institutional support and not knowing how to talk with Black women about HIV prevention because they were unsure what language could be stigmatizing.
From these interviews, McCoy identified a need to improve provider communication patterns around sexual health, particularly HIV prevention, with Black women. Developing and deploying this implementation strategy is beyond the scope of Project EnSTEP, so McCoy has started developing a second project around it.
In addition to implementing strategies that addressed barriers to HIV care for Black women, the Project EnSTEP team distributed testing tickets to the general population in Mecklenburg County to address financial barriers to transportation.
The cost of transportation can prevent people with lower incomes from accessing HIV clinics, consequently reducing their access to resources for HIV prevention and treatment. As a group that already has a greater likelihood of being diagnosed with HIV, people with lower socioeconomic status could benefit from reduced and free transportation, which is what the Project EnSTEP testing tickets aimed to provide. Specifically, the testing tickets reimbursed participants for transportation costs after they took a step toward preventing or treating HIV, which could include going to a clinic to take an HIV test, initiating PrEP, or maintaining HIV medication management.
“After COVID, money was being stretched extremely thin, especially for groups that have been marginalized,” McCoy said. “Our hope was that providing reimbursement for transportation costs would help alleviate financial barriers and get people to see a provider. After taking that first step, people might get tested more often, or at least improve their knowledge of HIV prevention and treatment.”
McCoy reported that 325 people redeemed a testing ticket, most of whom used the ticket to test for HIV for the first time, highlighting how eliminating even just one barrier to transportation can increase engagement in HIV prevention and care.
McCoy not only wanted to contribute to HIV prevention through PrEP awareness and addressing an HIV testing barrier, but also by improving knowledge of HIV prevention for researchers themselves. She presented strategies and findings from Project EnSTEP at research conferences and meetings across the nation, encouraging HIV prevention knowledge-sharing among researchers, especially researchers of color.
“As researchers of color, it is important that we are involved with the research activities that directly impact our communities,” McCoy said, emphasizing the value of mentorship and support from the University of North Carolina’s CFAR in ensuring this involvement.
McCoy knew she would be able to reach a larger audience by collaborating with other researchers, so she continued outreach efforts and was eventually invited to join the Inter-CFAR Underrepresented Minority (URM) HIV Investigators Working Group, a group of investigators working to address the barriers to and leverage points for URM-led, multidisciplinary HIV research.
“In this group, we’ve been working to bring awareness to what’s happening with HIV within communities of color, and to support each other in our efforts to remain relevant and involved in these processes,” McCoy said. “This group has given me access to additional investigators, resources, and opportunities, and I believe in bringing others along with me so we can all make a positive impact.”
Through her work with the Inter-CFAR URM HIV Investigators Working Group and efforts to disseminate the project findings, McCoy started pursuing new goals related to supporting URM-led HIV research and hopes to explore them in her next research project. Although she is researching more than the initial scope of Project EnSTEP, McCoy remains committed to Mecklenburg County and wants to continue building on the foundation community members and the Project EnSTEP team created for reducing disparities in HIV prevention and care.
“I made those initial connections in the community when I started Project EnSTEP with the intention of fully engaging community members, and not for the short-term. This project was never going to have a short timeline—we plan to carry our work forward to develop interventions that reduce HIV-related disparities long into the future,” said McCoy. “Our goal is not to just do research, but to enhance the community.”
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- Matthew Jenkins, MPA, Director – HIV/STD Division of Mecklenburg County Public Health
- Kate Muessig, PhD, Professor and Associate Director – Institute on Digital Health and Innovation at Florida State University
- Brianna Y. Gorman, MPH, CHES, Research Assistant – University of North Carolina Charlotte
- Patrick Robinson, MD, PhD, Research Professor – Academy for Population Health Innovation at the University of North Carolina Charlotte
- RAO Community Health Center
- CrumbSnatchers Marketing Agency
- Amity Medical Group – Charlotte, North Carolina
More on supplement projects: In support of the EHE Initiative, the NIH funded implementation science projects through its network of Centers for AIDS Research and the National Institute of Mental Health’s AIDS Research Centers. Research reported in this spotlight was supported under award number P30AI050410. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
More on the spotlight series: ISCI’s EHE Supplement Project Spotlight series does a deep dive on the research and findings from these projects, providing insight into how researchers, providers, and community members can advance health equity by scaling up HIV prevention and treatment strategies. Visit HIV.gov to learn about the EHE initiative and check out the NIH website for more information on supplement projects.
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