Executive Summary: Tribal Health Federal Panel and Listening Session

The National Institutes of Health (NIH) Office of AIDS Research (OAR) and the NIH Tribal Health Research Office (THRO), in collaboration with the Indian Health Service (IHS), hosted an event to share information on the federal response to the HIV epidemic and invite feedback from Indigenous¹ communities on opportunities to better support their health through culturally appropriate HIV research and programs.

The two-hour event took place on September 13, 2024, at the U.S. Conference on HIV/AIDS (USCHA), an event that brings together several thousand people involved in the domestic HIV response. The session included—

• Updates from federal leaders on existing efforts to end the HIV epidemic in the U.S., particularly as they related to Indigenous communities
• A listening session in which Native people and other attendees provided feedback on these efforts and identified existing gaps and opportunities

This document summarizes both discussions.

Federal Panel Discussion

The event opened with updates from federal agencies on current efforts to address the HIV epidemic in the U.S. and its impact on Indigenous communities. CAPT Glenshaw grounded the conversation in three interrelated efforts that work together to shape the federal HIV response—

• The National HIV/AIDS Strategy, launched by the White House Office of National HIV/AIDS Policy in 2021, which provides a roadmap to accelerate efforts to end the HIV epidemic in the U.S
• The Ending the HIV Epidemic in the U.S. (EHE) initiative, a key component of HHS efforts to implement the strategy and end the HIV epidemic in the U.S. by 2030
• The FY 2021-2025: NIH Strategic Plan for HIV and HIV-Related Research, a plan that guides NIH’s investment in HIV research—the largest public investment in HIV research—to the highest priority areas to help end HIV

Together, these efforts guide federal investments in HIV-related basic science, clinical, and behavioral research, as well as the implementation of those discoveries.

Mr. Ruiz identified the White House’s efforts toward a whole-of-government approach that fosters collaboration across agencies. Several panelists noted the need for an integrated syndemic approach that recognizes the interconnectedness of HIV with sexually transmitted infections, viral hepatitis, mental health disorders, and substance use disorders. They spoke to the urgency of sustaining and accelerating progress toward ending HIV, citing the recent surge in syphilis cases—which have reached the highest levels since the 1950s—and noting that HIV could make a similar resurgence if current efforts are not accelerated. (Learn more about the National Syphilis and Congenital Syphilis Syndemic (NSCSS) Federal Task Force and efforts to address syphilis in tribal communities.)

Additional discussion included—

• NIH OAR efforts to provide forums like this session in which diverse constituencies, including tribal communities, can provide input on NIH HIV research priorities
• The existence of the NIH THRO as a unique entity within NIH dedicated specifically to the health of Native communities
• The need to meet Native people where they are through approaches similar to “PACHA to the People,” which brought discussions about the national HIV response into communities most affected by HIV—direct outreach that is seen as essential to building trust with Native communities
• The importance of federal funding to sustain and accelerate progress toward ending HIV and opportunities for tribal community members to share the value of EHE efforts in their communities with their elected officials
• Research to benefit tribal communities, including research funding opportunities explicitly focused on Native populations, better representation in the research workforce, and implementation research to help address stigma and to identify whether interventions that have been successful elsewhere can translate to Native communities
• Opportunities to celebrate success stories both to recognize achievements and to better enable the replication of successful approaches

Critical to the success of any of these efforts is ensuring that tribal communities are well represented in discussions about addressing the HIV epidemic. The event transitioned to an opportunity for attendees to share feedback with federal leaders.

Listening Session

The listening session built on previous engagements hosted by OAR to center the health of communities disproportionately affected by HIV. One such listening session was held at the National Council of Urban Indian Health Annual Conference in May 2022. There, tribal community members highlighted the need for inclusion in research development, the role of family among American Indian/Alaska Native (AI/AN) communities, and the need to connect with urban centers to reach AI/AN people.

USCHA attendees echoed those sentiments and provided additional insights and recommendations. Of note, those who provided feedback during the listening session included both members of tribal communities and other attendees. This summary reflects feedback from all participants, including the session moderator Sheila Caldwell, Acting Deputy Director of the NIH THRO.

• Participants identified the following as essential to centering the health of Native people in HIV research: Meet tribal communities where they are, both physically and culturally. Access to HIV services and research participation opportunities needs to be provided to Native people in both urban and rural areas; a majority of Native people live in urban areas far from tribal health centers. Federal leaders need to prioritize engagement opportunities in Native communities where people may be most comfortable. Cultural humility is paramount. Attendees shared statements that particularly resonated with the audience:
  • “Our ways and our styles are different.”
  • “Decolonize your thoughts around research deadlines.”
  • “Go slow to go fast.”
• Enhance communication efforts. Participants called for broader dissemination of existing and new research findings that are often challenging to access publicly. Groups distributing HIV-related information should consider multiple communications channels such as visual storytelling—a modality central to Native culture—and avoid jargon and acronyms that can obscure messaging. Older Native people, in particular, still use radio and print media, while younger Native people are more likely to use social media and other digital channels. Information dissemination to cross-generational communities is critical.
• An integrated government approach is needed. Participants noted that community efforts to apply for federal funding can be complicated by differing funding requirements across different agencies. They expressed a need for “braided” funding opportunities, such as singular funding opportunities sourced by more than one federal agency to address the full HIV prevention and care continuum.
• HIV research, funding, and services need to account for other social determinants of health and enable better linkage to care. It is essential to integrate services that address other fundamental needs, such as housing resources, life skills, and childcare to enable Native people to take advantage of HIV testing, prevention, and care services.
• Stigma and fear must be addressed. Pervasive and intersectional stigma, fear, and mistrust were identified as significant barriers to effective reach and uptake of HIV services in Native communities. The word “research” may carry negative connotations, evoking concepts of experimentation. Those involved in the HIV research response should communicate openly about who is conducting research and why, as well as who owns research data.
• Address tribal community needs through the HIV workforce. Participants identified numerous opportunities to ensure the HIV workforce can better support tribal communities. They called for earlier opportunities to support next-generation researchers, training opportunities for researchers and clinicians to better understand Native cultures, leadership development opportunities for Native people, and training for tribal centers to conduct research and access data.
• Additional feedback covered multiple topics. Attendees called for opportunities for young people to participate in the HIV response, such as serving on institutional review boards or participating in Native American Research Centers for Health (NARCH). Participants also identified the need to consider all Native communities, including Native Hawaiians and Pacific Islanders.

Next Steps & Related Resources

Feedback and insights shared by attendees are actively informing federal collaborations to better meet the needs of tribal communities. These include efforts underway to realize the goal of coordinated, or braided, federal funding opportunities.

Learn more and stay tuned for additional updates:

• Sign up for updates on the NIH HIV research program via the NIH Office of AIDS Research.
• CDC’s Let’s Stop HIV Together campaign is an evidence-based campaign available in English and Spanish. It aims to empower communities, partners, and healthcare providers to reduce HIV stigma and promote HIV testing, prevention, and treatment.
• CDC’s Together TakeMeHome is a program that mails free HIV self-tests with the goal of making HIV testing more accessible across the U.S., including Puerto Rico. The self-tests are a fast and private way to test for HIV since they can be used anywhere and at any time.

¹ This document interchanges the terms Indigenous and Native to reference American Indian, Alaska Native, and Native Hawaiian People. For more information on how Native people of the Americas use the terms, please visit the following link from the National Museum of the American Indian.