Building Research Partnerships for Healthy Sovereign Tribal Nations

THRO Strategic Plan report cover

The Office of AIDS Research (OAR) looks forward to strengthening partnerships to leverage scientific discovery that can improve health outcomes for people with HIV and help end the HIV pandemic. To ensure progress through research, the OAR continues to work across local, state, and federal agencies, as well as with diverse community and public health partners, to fill the gaps in our scientific understanding of the HIV pandemic among all populations.

Following World AIDS Day (December 1, 2020) and anticipating National Native HIV/AIDS Awareness Day (March 20), the National Institutes of Health (NIH) continues to make extraordinary gains to address coronavirus disease 2019 (COVID-19)—a disease that disproportionately burdens sovereign Tribal Nations, as well as other racial and ethnic minority populations. The time is ideal to take a closer look at the OAR’s partnership with the NIH Tribal Health Research Office (THRO) and the impact of HIV/AIDS on American Indians and Alaska Natives (AI/AN).

THRO and the OAR are both located in the Division of Program Coordination, Planning, and Strategic Initiatives, in the NIH Office of the Director, and work in partnership. The OAR coordinates the scientific, budgetary, legislative, and policy components of NIH HIV/AIDS research. THRO works to ensure meaningful input from, and collaboration with, Tribal Nations on NIH programs and policies. THRO and OAR each work across most of the NIH Institutes, Centers, and Offices. The OAR collaborates with THRO’s NIH Tribal Advisory Committee to understand how to work with Tribal Nations in a way that respects sovereignty and is culturally appropriate and responsive to community concerns.

In December, the OAR was honored to feature THRO’s director, Dr. David R. Wilson, in the 2020 NIH World AIDS Day event, Science and Community: Working Together to Prepare for the Unexpected. During his presentation, Dr. Wilson emphasized that to meet the needs of Tribal communities and improve HIV/AIDS health outcomes, we must first acknowledge that Tribal communities are extremely diverse. Currently, there are 574 federally recognized Tribes across the United States with unique languages, cultures, and traditions. As we strive to engage and meet the needs of these diverse communities, on topics of research and health, it is essential to keep these differences in mind.

During these challenging times, when so much of the focus is on COVID-19, we need to also refocus our attention on HIV data and what the science shows for Tribal communities in terms of HIV infection and AIDS.

Misclassification and undersampling of AI/AN populations in disease surveillance systems is a pervasive issue. What is known is that in 2018, AI/AN represented 1.3 percent of the U.S. population, yet only 0.5 percent of the HIV diagnoses.¹ The low frequency may be due, in part, to the high rate of undiagnosed persons in the AI/AN population, which in 2014 was estimated at approximately 18 percent compared with the estimated national undiagnosed rate of 13 percent.² Most of the new diagnoses in the AI/AN population are among gay and bisexual men. Between 2010 and 2017, the annual number of HIV diagnoses for AI/AN increased 39 percent, with a 67 percent increase for ages 25–34, and a 54 percent increase among men. Importantly, AI/AN have lower rates of detectable HIV (viral suppression) than other people with HIV in the United States. For example, 49 of every 100 AI/AN with HIV, compared with 53 of every 100 people overall with HIV, were virally suppressed.¹

Although Native American males continue to be among the population impacted greatest by HIV, Dr. Wilson noted a lack of strategies that specifically focus on AI/AN men to help reduce their risk of HIV infection or transmission. Multiple approaches might be implemented to overcome the barriers to engage Tribal communities in HIV/AIDS prevention and treatment efforts.

Barriers include stigma of various forms and types, including intersectional stigma; mistrust and suspicion of health care systems and the federal government; lack of information on risk factors; concerns about safety, efficacy, and acceptability of treatment and prevention strategies; socioeconomic and sociocultural issues; and substance use disorders.

Key strategies to overcome these barriers include the opportunity to strengthen the capacity of Tribal health educators, clinicians, other health care providers, and community-based programs to provide services; as appropriate, take whole person/whole life approaches; seek input from the community and from those hardly reached; diagnose as early as possible; use culturally effective communication approaches to treat rapidly and successfully to lower rates of detectable HIV; prevent new HIV transmission through tested interventions; respond quickly to potential HIV outbreaks; and deliver health services in a way that meets cultural and community needs.

Dr. Wilson explained that for successful strategies to overcome barriers, we must keep in mind that community-driven research and support are vital for AI/AN populations. This includes working with Tribal partners, listening to community needs, conducting community-engaged research, and other activities and services.

To glean additional insights and find the best path forward for leveraging partnerships, Dr. Goodenow and Dr. Wilson continued their discussion in an ongoing conversation:

Dr. Goodenow: How does THRO go about community engagement and what can the OAR do to enhance THRO’s work in this area?

Dr. Wilson: Before the COVID-19 pandemic, we were making good progress with building connections to Tribal communities and exploring opportunities to engage the NIH Centers for AIDS Research (CFARs) in our outreach to the Tribal Epidemiology Centers. When the pandemic hit, those efforts came to a standstill and the focus shifted to COVID-19.

We need to bring more awareness to HIV/AIDS prevention strategies, particularly to new long-acting pre-exposure prophylaxis, and reduce transmission and stigma, all of which are huge barriers. While many entities are doing great work, we need to build more capacity and get additional support from other sources. For example, the CFARs have a strong system in place that could benefit this area of work.

Dr. Goodenow: There are a number of NIH partners for building HIV prevention capacity, including the Research Centers in Minority Institutions (RCMI), the Institutional Development Award (IDeA) program, the Native American Research Centers for Health (NARCH), and the Clinical and Translational Science Awards (CTSA) program.

Dr. Wilson: Right. Each of these programs presents another strong path that we could pursue to address challenges posed by HIV to the diverse AI/AN communities.

The RCMI Program develops and strengthens the research infrastructure necessary to conduct biomedical research at institutions that have a historical and current commitment to serving students from underrepresented populations.

The IDeA Program supports faculty development and institutional research infrastructure enhancement in states that have historically received low levels of support from NIH and serves rural and medically underserved communities.

The NARCH Program is a partnership between the NIH and the Indian Health Service that provides support for research capacity-building in AI/AN communities to address health issues pertinent to this population and provides research experience training for faculty and students.

The CTSA Program supports a national network of medical research institutions (called hubs) that work together to improve the translational research process to provide more treatments to more individuals more quickly. The hubs collaborate locally and regionally to catalyze innovation in training, research tools, and processes. CTSA Program support enables research teams that include scientists, patient advocacy organizations, and community members to tackle system-wide scientific and operational problems in clinical and translational research.

In addition to pursuing partnerships with these NIH programs, it’s important to provide outreach to Tribes this and subsequent years, in terms of resources.

Dr. Goodenow: What type of outreach will benefit the Tribal communities?

Dr. Wilson: The Native researchers need support and assistance with grant writing so they can be successful in applying for grants. To gain momentum with HIV/AIDS prevention and treatment in the Tribal communities, the Native researchers need to be a part of the research process, including with data management.

Outreach also pertains to providing training for young students in the AI/AN communities to cultivate their interest in science, technology, engineering, and mathematics. For example, THRO and the National Institute of Neurological Disorders and Stroke at the NIH are engaged in a training hub, which is a research hub for young students that is taking place in Washington State. The project aims to prepare students from underrepresented populations to be competitive applicants for the NIH Summer Internship Program in Biomedical Research. The scientific preparatory summer program is unique in that a Tribal Ecological Knowledge component is incorporated. This program aims to expose diverse students to basic laboratory procedures, including planning experiments, evaluating data, keeping a laboratory notebook, reading and evaluating journal articles, and understanding basic laboratory techniques.

Together, we are providing the students with a path to move toward applying to the NIH. The training is very mindful of the culture, involves elders, and allows students to stay close to their families while connecting with the NIH. We need more collaborative efforts and initiatives of this kind.

Dr. Goodenow: Thank you for sharing these very important insights and suggestions, Dr. Wilson. The OAR looks forward to ongoing discussions with THRO and to developing next steps and a long-range strategy that we can take at the NIH to improve HIV/AIDS health outcomes and research/training opportunities for the Tribal communities nationwide.

These conversations are essential to formulate actions and goals for the NIH HIV/AIDS research investment and ensure that resource investment is allocated to the highest priority areas to meet the needs of different, hardly reached communities and increase capacity-building programs.

The NIH is committed to improving health outcomes for all individuals and addressing long-standing health disparities through strengthening existing partnerships and building new ones to advance scientific discoveries, prevent and treat HIV, and ultimately find a cure for HIV.

Maureen M. Goodenow, Ph.D.
Associate Director for AIDS Research and
Director, Office of AIDS Research
National Institutes of Health

David R. Wilson, Ph.D.
Director, Tribal Health Research Office
National Institutes of Health

 


 

¹Centers for Disease Control and Prevention. HIV and American Indians and Alaska Natives. Available at https://www.cdc.gov/hiv/group/racialethnic/aian/index.html.

²National Indian Health Board, HIV and Sexually Transmitted Infections (STI) in American Indian and Alaska Native Communities. Available at https://www.nihb.org/behavioral_health/hiv_indian_country.php.

This page last reviewed on March 24, 2021