TAHLEQUAH, Okla. — The Cherokee Nation Health Services Rare Disease Task Force has released a report outlining progress made over the past year and recommendations the tribe can take in the future to help address the unique challenges faced by patients with rare diseases both on and off the Cherokee Nation Reservation.
Established by Principal Chief Chuck Hoskin Jr.’s executive order on February 29, 2024, the task force has spent the past year thoroughly examining treatment approaches and developing strategies to enhance care for patients and families affected by rare diseases.
During a Rare Disease Awareness Month proclamation signing March 7 inside the Cherokee Nation Outpatient Health Center in Tahlequah, Chief Hoskin highlighted findings of the Rare Disease Task Force and announced the tribe’s plan to host its second Rare Disease Summit later this year.
“The work of the Rare Disease Task Force represents our unwavering commitment to provide the most comprehensive care possible for the patients in our health system, including those facing the unique challenges of rare diseases,” said Chief Hoskin. “The conclusions of our task force not only highlight the significant progress we’ve made in the past year but also charts a clear path forward to ensure no one is left behind in our health care system. I want to thank First Lady January Hoskin for her advocacy on improving health care outcomes for those with rare diseases, and the entire task force for their time and effort.”
Since the task force began its work in 2024, Cherokee Nation Health Services has assigned a Registered Nurse to serve as case manager for rare disease patients. The case manager works closely with both the primary care team and specialists to close gaps in care and assist patients with access to critical resources, helping facilitate referrals, durable medical equipment needs and other services necessary
“Too often, those living with rare diseases feel isolated and under-served. Our Rare Disease Task Force has focused on how we can come together as a community, share knowledge through activities such as our upcoming Rare Disease Summit, and demonstrate that the Cherokee Nation stands with them,” said First Lady Hoskin. “For those who have rare diseases, the findings of this report and the guidance it provides us for the future show we are committed to being a partner in their journey toward better health and an improved quality of life.”
The report, available online, emphasizes the importance of the Cherokee Nation Health Services’ participation as a sub-recipient of the Improving Cancer Outcomes for Native American Communities research grant in collaboration with the OU Stephenson Cancer Center. This initiative focuses on lung cancer screening and patient care navigation, with particular relevance to rare cancers, which account for approximately 20% to 25% of all cancer diagnoses in the U.S.
In February, the Cherokee Nation celebrated an investment of up to $8 million each in strategic partnerships with Mercy in Fort Smith, Arkansas, and the University of Oklahoma Health Stephenson Cancer Center in Tulsa. Funding will support state-of-the-art cancer treatment centers, providing critical care closer to home for Cherokee Nation citizens and others being diagnosed or battling cancer in the region.
“Through the diligent work of the Rare Disease Task Force, we are building a stronger, more responsive health care system that recognizes and addresses the specialized needs of patients with rare diseases,” said Deputy Chief Bryan Warner. “These accomplishments demonstrate that when we combine traditional knowledge with modern medical advances, we can create innovative solutions that truly serve our people.”
Key accomplishments outlined in the report include the establishment of a committee to evaluate specialty lab availability, including genetic testing for rare disease diagnosis, while adhering to evidence-based medicine protocols. Additionally, the task force oversaw the planning phase for a dedicated research department and the development of system-wide cancer care coordinator positions.
The Rare Disease Task Force report provided a number of other recommendations including:
- Continue to host the tribe’s Rare Disease Summit
- Establish a permanent rare disease advisory group
- Expand behavioral health and specialty services
- Develop financial support mechanisms for patients with rare diseases
- Strengthen data sovereignty and research partnerships to ensure patient information is protected and respected
- Continue the growth of rare disease case management
The Cherokee Nation’s second Rare Disease Summit will be held June 12 to address the unique challenges facing tribal citizens with rare medical conditions. The summit will bring together specialty physicians, healthcare professionals and community members to discuss key topics and classified rare diseases impacting the reservation.
The summit will feature a range of speakers including medical specialists across neurology, rheumatology, optometry, infectious disease, and pediatrics. Attendees will have the opportunity to engage with experts through a question-and-answer panel. Registration is required to attend the free summit and can be completed by visiting https://cherokee.org/rare-disease-summit/.
With rare diseases affecting an estimated 1 in 10 Americans and over 7,000 known conditions, the Cherokee Nation’s initiative represents a significant step toward raising awareness and addressing these complex medical challenges.
According to the National Institutes of Health, any disease affecting fewer than 200,000 people in the United States is considered rare, and more than 90% lack FDA-approved treatments. Cherokee Nation’s healthcare system, the largest and most effective in Indian Country, is committed to finding solutions and increasing resources for people with these conditions by raising awareness, advocating for policy change, and building a growing support network.
Joining Chief and First Lady Hoskin at the event was Cherokee Nation citizen Meadow Hill and her parents Roy and Crystal. Meadow was diagnosed with Ehlers Danlos Syndrome and like many patients with rare diseases, faces challenges to find and pay for specialty care.
“Our hope is that, by implementing the Rare Disease Task Force’s recommendations and continually looking for ways to do more, that Cherokee Nation citizens like Meadow will find more comfort and care and recognize that they are not on their journey alone,” Chief Hoskin said.