A conversation between Dr. David R. Wilson, director of the NIH Tribal Health Research Office, and Dr. Lindsey A. Criswell, director of NIAMS, about information and resources for American Indians and Alaska Natives related to bone, muscle, skin, and autoimmune diseases.
Listen to the audio recording.
Dave Wilson: Hello, my name is Dr. Dave Wilson. I am a member of the Navajo Nation, and I am also the Director of the Tribal Health Research Office, also known as THRO, here at the National Institutes of Health. Today I am joined by my colleague Dr. Lindsay Criswell, who is the Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, or NIAMS for short, which is also a part of the NIH. Dr. Criswell is a board-certified rheumatologist and was recently elected to the Association of American Physicians, an honor extended to physicians with outstanding credentials in biomedical research. Welcome, Dr. Criswell.
Lindsay Criswell: Thank you, Dr. Wilson. It's a pleasure to be here today to discuss NIAMS’ efforts to support tribal health.
Dave Wilson: Almost every household in America, including those in tribal communities, is affected by diseases of the bones, joints, muscles and skin. In fact, American Indians and Alaska Natives are often disproportionately affected by certain diseases like rheumatoid arthritis, for example, and NIAMS works to understand and to treat those diseases and conditions through research. So, Dr. Criswell, my first question, or actually acknowledgement, is I really want to acknowledge NIAMS' history of dedication to tribal health communications. Long before the Tribal Health Research Office was established in 2015, NIAMS led NIH-wide efforts to communicate relevant health information and research advances with tribal communities. Can you discuss a little bit more about NIAMS past and current efforts to support resource development and information sharing with tribal communities?
Lindsay Criswell: One of the earlier NIAMS-led efforts was the 2005 formation of the NIH American Indian and Alaska Native Health Communications and Information Work Group, which provided a forum for health education and communications staff from across the NIH. This group met regularly to share strategies for effective communication approaches to disseminate reliable health information to tribal communities and hosted workshops to educate NIH staff on socially and culturally conscious methods to reach these communities. The primary output of this work was the Honoring Health e-newsletter, featuring NIH health topics, resources, events, training and funding opportunities for American Indians and Alaska Natives. This newsletter was formed in collaboration with the Indian Health Service, also known as IHS, and the Administration for Community Living Administration on Aging, showcasing NIH’s ability to work across federal lines to provide quality resources for tribal communities. Many NIH Institutes, Centers and Offices contributed content over the years. In 2020, as you know, NIAMS worked with your office to transition the leadership of the work group and development of the newsletter to THRO, where it now functions as a subcommittee of THRO’s Tribal Health Research Coordinating Committee. NIAMS is proud to have hosted and grown these initiatives for many years, and we're excited that they can now thrive under THRO’s leadership. We will continue to support THRO in these efforts and look forward to future opportunities for collaboratively sharing information. NIAMS also collaborates with other Institutes in hosting activities designed to benefit tribal communities. For example, in late 2020, NIAMS worked with the Child Health Institute to plan and implement a two-day workshop that addressed building an indigenous evaluation framework with the Urban Indian Health Institute. This workshop included more than 40 staff from NIH and other federal agencies. They were trained on ways to recognize research, data, and evaluation principles that are aligned with indigenous values and how to ensure the data is used for the benefit of Indigenous people. We recognize the importance of educating NIH staff on how we can better support tribal health. I appreciate the informative NIH-wide lectures that THRO facilitates to educate the research community, such as the recent 2021 lecture on interconnectedness of culture and science.
Dave Wilson: Thank you so much. There is just a tremendous amount of resources available through NIAMS, and we really appreciate that. There are a number of diseases and conditions that NIAMS studies that adversely impact Native people, including systemic lupus erythematosus, or SLE or lupus, arthritis, scleroderma, and Sjögren’s syndrome. Can you please tell us a little more about these diseases and why Native American people could be at risk for some of these conditions?
Lindsay Criswell: Yes, it's true that many diseases within the NIAMS mission areas significantly impact or even disproportionately impact Native people. For example, tribal communities have some of the highest rates of arthritis, including rheumatoid arthritis, which is a disease that causes inflammation in the joints and throughout the body. As compared with the general population, Alaska Natives also have higher rates of juvenile idiopathic arthritis, which is the most common form of arthritis in children. And with regard to osteoarthritis, or OA, lifestyle factors such as body weight may play an important role in increasing OA risk in AI/AN communities. Autoimmune diseases, in which the immune cells target the body's own healthy tissues by mistake, also significantly impact tribal communities. These include, as you mentioned, systemic lupus erythematosus, or lupus, which is an autoimmune disease that causes inflammation in multiple organs throughout the body. Another autoimmune condition that disproportionately affects Native communities is Sjögren’s disease. Sjögren’s causes dry eyes and mouth and inflammation in other parts of the body. Scleroderma, or systemic sclerosis, is an autoimmune disease that causes inflammation in the skin, as well as other areas of the body. The Choctaw American Indians of Oklahoma have among the highest rates of scleroderma in the country. I should also point out the two forms of arthritis that I mentioned earlier, rheumatoid arthritis and most forms of juvenile idiopathic arthritis are also autoimmune in nature. Although it's not entirely clear why some tribes are more significantly impacted by these diseases when compared with the general population, we suspect that a combination of genetic, immune and environmental factors, or social determinants, all play important roles. In addition to higher rates of some rheumatic and skin diseases, American Indian and Alaska Native women are at increased risk for osteoporosis, which is a disease that makes the bones weak and prone to fracture. There may be a number of factors at play here. Osteoporosis risk may be particularly tied to an increased prevalence of type 2 diabetes among Native communities.
Dave Wilson: Great, thank you so much. And what you've highlighted is the importance of research and how much we still have to learn about autoimmune diseases and the roles they play in tribal communities. To further expand upon this topic, are there any research areas that you would like to highlight that would be relevant for tribal communities?
Lindsay Criswell: Thank you. So yes, what are we doing to address these disproportionate disease risks among Native communities? Our Oklahoma Rheumatic Disease Research Cores Center has focused on patient-oriented investigation, specifically in American Indian and other communities. The Center has enhanced our understanding of the underlying mechanisms of rheumatic disease in tribal communities, particularly with regards to autoantibody profiles in Native Americans with autoimmune disease. NIAMS is one of three NIH Institutes that support the Cherokee Nation Native American Research Center for Health, or NARCH, which conducts community-engaged research and scientific workforce enhancement projects keyed to the major health issues affecting American Indians in northeastern Oklahoma. The Center is researching the molecular underpinnings of autoimmunity among tribal members, and key personnel mentor and train American Indian students for careers in academia, medicine and tribal service. We also supported the Navajo Bone Health Study, which was one of the first initiatives keyed to bone health and osteoporosis in tribal communities. The study helped to characterize osteoporosis risk factors in AI/AN individuals. And NIAMS continues to participate in NIH-wide funding opportunities that are focused on research to improve tribal health.
Dave Wilson: Outstanding. One of the goals for the NIH Strategic Plan for Tribal Health Research is to build research capacity in tribal communities and create opportunities for the next generation of American Indian and Alaska Native researchers. Are there specific training opportunities that you would like to highlight?
Lindsay Criswell: Thank you. So, I've already mentioned the NIAMS-supported NARCH training and mentoring program for American Indian students. NIAMS has also developed a Diversity Supplement Scholars Program that provides funding opportunities for researchers from groups that have been historically underrepresented in science. Through this program, we established an annual cohort of diversity supplement scholars and mentors, with the goal of providing support and resources aimed to foster the scholar’s career trajectory towards an independent research career. The NIAMS Intramural Research Program, or IRP, also participates in the American Indian Science and Engineering Society national and regional meetings to increase the exposure of the NIAMS IRP and recruitment participation efforts for AI/AN communities. The NIAMS IRP has also co-hosted NIH campus tours for students from the National Native American Youth Initiative. NIAMS recognizes the importance of diversity in research, and the value of integrating traditional healing approaches in patient care. We are committed to supporting research that reflects the diversity of our nation and to keeping a diverse scientific workforce pipeline. We look forward to our continued partnership with the NIH Tribal Health Research Office.
Dave Wilson: Dr. Criswell, I want to thank you so much for being here today. It's been a pleasure speaking with you and learning so much more about NIAMS and their long-standing commitment to tribal health research, and its engagement opportunities and resources related to improving the health of American Indian and Alaskan Natives. For everybody out there, thank you so much for listening. We appreciate it.
Lindsay Criswell: Thank you.