Ending the HIV Epidemic Through Community Engagement

December 16, 2020 | Tequam Worku

Though there have been significant strides in HIV rates in the past decade, there are severe racial disparities in new HIV diagnoses. In 2018, 69% of all diagnoses were gay, bisexual, and other men who have sex with men. In the same year, Black and Hispanic populations accounted for 42% and 27% of all new diagnoses respectively. These statistics are sobering as we commemorate AIDS/HIV Awareness Month throughout December.

As the federally-funded Ending the HIV Epidemic: A Plan for America (EHE) enters its second year, it is apparent that community engagement is paramount in reaching those that are out of care and making sure resources are available to the communities who need them most.

Community engagement involves meaningful participation of non-traditional partners, elevating their voices and empowering communities to improve their own health. The federal government is affirming its commitment to community engagement and keeping a health equity lens front and center, and states are following suit in their own HIV planning.

What is EHE?

The U.S. Department of Health and Human Services (HHS) launched the national Ending the HIV Epidemic: A Plan for America in 2019 to reduce new HIV infections by 75% in five years and 90% by 2030. Within HHS, CDC, Health Resources and Services Administration (HRSA), National Institutes of Health (NIH), Indian Health Services (IHS), and Substance Abuse and Mental Health Services Administration (SAMHSA) are collaboratively implementing the initiative across four pillar areas:

  • Diagnose
  • Treat
  • Prevent
  • Respond

The first five years of the ten-year initiative will focus on 57 jurisdictions with a high share of HIV diagnoses: 48 counties, the District of Columbia, San Juan, and seven states that have a high rural HIV burden (Alabama, Arkansas, Kentucky, Mississippi, Missouri, Oklahoma, and South Carolina).

Keeping Community Engagement Paramount

The initiative requires engagement of representatives of populations with high prevalence of HIV infection throughout EHE planning and implementation. This could include community partners, such as sex workers, elderly populations, women of color, LGBTQ communities, intimate partner violence organizations, community-based organizations serving tribal, immigrant and homeless populations, and others.

CDC requires a community engagement component for EHE plans. Jurisdictions receiving EHE funding must document engagement of HIV planning bodies, community partners, and HIV/AIDS service providers. The guidance notes that jurisdictions may need to reconsider how they are reaching new voices.

Jurisdictions will be submitting their final EHE plans to CDC by Dec. 31, as well as posting plans on a public-facing website. These EHE plans are intended to be living documents to allow for continuous community feedback and plan refinement.

HRSA and CDC are also creating opportunities for communities to engage with their own planning efforts. HRSA leadership has held over 23 listening sessions with national stakeholders and in numerous states. CDC, in partnership with capacity building network technical assistance providers, also hosted regional community engagement town hall meetings to encourage and empower community members to engage in local EHE efforts.

How are the States Meeting Community Engagement Requirements?

As part of their EHE plan development process, jurisdictions have been hosting community listening sessions (in-person and virtually) to ensure active involvement of community advocates in mapping out a plan that meets the needs of the most vulnerable populations.

Kentucky used a survey to recruit participants for a total of 24 meetings in six regions and four statewide meetings, and the state received over 1,000 responses from traditional and nontraditional partners, including community advocates. To alleviate the constraints on community participation, the state also distributed smart phones to all members of the community so they could participate virtually.

Kentucky aggregated data from the surveys and meetings to conduct situational analysis and develop epidemiological profiles. People with substance use disorders were one of the newly identified high-risk populations. Input from the community stakeholders has also helped inform the state on how to tailor EHE strategies for rural versus urban communities.

Missouri engaged a contractor to conduct a statewide needs assessment for HIV prevention, engagement in care, and retention in care to identify the unmet needs of residents. This assessment will help identify challenges, barriers that interrupt continued HIV care practices, and to inform the development of their EHE plan. In addition to the more traditional feedback sessions, they will gather community feedback using social media and dating apps, allowing them to reach LGBTQI and other priority populations.

Arkansas shifted their planned onsite community visits to virtual focus groups and listening sessions because of COVID-19. The state was successful in gathering community feedback around stigma to help inform strategies for mitigating some of the barriers to testing and accessing care. Based on the feedback received, the state health department is working with their university hospital, the University of Arkansas for Medical Sciences, its partner FQHC ARCare, Inc., and other community-based organizations to make home testing available for residents.

As EHE jurisdictions move towards publishing and implementing their plans for ending the HIV epidemic, embracing and empowering communities will play a pivotal role in bridging the disparities across the continuum of HIV care. ASTHO will continue to provide support to states in their mission to end the HIV epidemic.

The development of this blog post is supported by HRSA. This information and conclusions are those of the authors and should not be construed as the official position of, nor should any endorsements be inferred by HRSA, HHS, or the U.S. government.