Combating high RA prevalence in Navajo Nation requires ‘position of humble inquiry’
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Compared with the general U.S. population, Navajo Nation in Arizona, New Mexico and Utah has five times the prevalence of rheumatoid arthritis.
On top of that, there is a waiting list more than 6 months long to see the single rheumatologist serving the area.
Numbers like these should attract attention from an array of players in U.S. health care policy. However, poor funding, lack of political will and patient mistrust stemming from centuries of colonialization, prejudice and violence have left providers with little opportunity to reverse course.
In response to this crisis, Jennifer Mandal, MD, of the University of California, San Francisco, and colleagues in 2021 launched the Rheumatology Access Expansion (RAE) Initiative to explore ways to improve access to rheumatology care in underserved Native communities.
“We began with a focus on Navajo Nation, the largest Native American reservation in the United States,” she told Healio.
The aim was to mitigate the synergistic effects of increased rates of disease and reduced access to care in these communities.
“The social determinants of health that conspire to reduce life expectancy and worsen the outcomes of a range of chronic diseases on Navajo Nation also severely impact people living with rheumatic disease,” Jinoos Yazdany, MD, chief of the division of rheumatology at Zuckerberg San Francisco General Hospital, and Alice Betts endowed professor of medicine at the University of California, San Francisco, said in an interview.
Overcoming these obstacles is no easy task, according to Mia Lozada, MD, a general internist at the Gallup Indian Medical Center, in New Mexico, located right on the border of Navajo Nation. This is particularly true for those living in rural areas.
“Caring for Native American people is a privilege and can be extremely complex,” Lozada said. “Some, but not all, [American Indian/Alaska Native] people live rurally and the challenges of remote living — sometimes living without running water or electricity — need to be incorporated into the way a care plan is developed for an individual.”
Cell phone service can be spotty on the reservation, she added.
“Transportation challenges due to lack of paved roads and lack of access to vehicles can make frequent visits for laboratory monitoring or infusions extremely challenging,” Lozada said.
Beyond the physical hindrances, misconceptions can prove problematic, as well.
“As with all aspects of care for Native American patients, so much of what we learn as physicians in medical school and residency is based on a narrative and a foundation of research and learning that was built on the white experience,” Lozada said. “The bulk of research and evidence-based medicine rarely represents Native American experiences.”
Understanding the scope and reality of the challenges facing rheumatology providers serving Native populations is critical to creating treatment paradigms for this grossly underserved population.
‘No easy solutions’
According to Yazdany, some of the issues that are particularly pressing in Navajo Nation include food, housing and income insecurity, along with lack of broadband internet access.
“These issues all pose serious challenges to providing high-quality care, as well as to patients being able to effectively self-manage their disease,” she said. “Unfortunately, there are no easy solutions, but it is important to realize that addressing these social determinants of health is fundamental to improving health outcomes.”
Physicians caring for these populations have two overarching interests. One is to try to function in a resource-limited environment, while the other is to advocate for structural changes that will improve health and reduce health disparities over the long-term.
Both require complex and layered solutions that must start in the same place — the actual people being served.
“It is important to center the voices and needs of the community at all times,” Mandal said. “For any intervention that aims to improve care or access to care to be successful, the specific cultural, logistical, linguistic and social factors that immensely impact how health care is perceived and delivered must be considered. For us, partnering closely with local community health leaders and listening to local primary care providers, community health representatives and patients has been key.”
Part of this involves the slow but necessary work of building trust.
“There is a long list of ways that the medical field has mistreated and abused Native American people over time, and this has led to an understandable undercurrent of mistrust,” Lozada said. “There are ways that AI/AN people can be better represented in research, but we are still on the slow path to rebuilding trust.”
Broken trust
In 1990, individuals from the Havasupai Tribe in Arizona agreed to participate in an Arizona State University type 2 diabetes study.
A researcher from the university drew hundreds of blood samples from approximately 100 Havasupai members. The genetic data ultimately revealed little about any proclivity toward diabetes among the tribe. However, years later, it was revealed that their blood was used without their knowledge for other research, including studies on the genetic basis of schizophrenia, as well as on inbreeding, alcoholism and migration.
The resulting lawsuit, Havasupai Tribe vs. the Arizona Board of Regents, listed charges of violating informed consent and civil rights, as well as intentional or negligent infliction of emotional distress. After years of litigation, a settlement was reached in 2010 that saw the university’s board of regents agree to a payment of $700,000 to 41 of the tribe’s members, the return of the blood samples, and other forms of assistance, including scholarships and help in obtaining federal funding for a health clinic.
The case should be more well-known among lay individuals and the medical community, but it is not, according to Lozada.
“In medical training, in our ethics classes we learn about the horrors of Tuskegee and syphilis,” she said. “We should also discuss what happened to AI/AN peoples just 20 to 30 years ago.”
The feeling of distrust continues today. From 2021 to 2022, Mandal’s group conducted a needs assessment study of 45 primary care providers working on Navajo Nation, many of whom referenced these events of the near past.
“Our patients have a lot of historical trauma,” one provider said. “So, they are reluctant to go off reservation where they may not get culturally appropriate care. They have these specialist consultations, and they don’t trust them. There’s a trust aspect that’s a big barrier for patients.”
Yazdany described this as being rooted in “a long history of misguided efforts” to impose health care programs on Native American populations without their full input and partnership.
“Any programs need full community engagement and leadership,” she said.
It was in this context that the RAE Initiative launched the Rheumatoid Arthritis ECHO (RA ECHO) training program for primary care physicians in Navajo Nation, specifically based on interviews and surveys with the people directly involved.
‘Position of humble inquiry’
RA ECHO is a remote, 12-week training program to teach Navajo Nation PCPs about the diagnosis and management of RA.
“We successfully offered the RA ECHO curriculum three times on Navajo Nation from 2021 to 2022,” Mandal said. “For our fourth cohort in the spring of 2023, we expanded our target audience, inviting health care workers serving American Indian communities across the country through an organization called Indian Country ECHO.
Providers from 15 states participated in the fourth cohort.
“We learned that many of them strongly desired more training in rheumatology in order to better serve their patients with rheumatic conditions,” Mandal said. “They also believed that many of their patients actually prefer to receive their rheumatology care from their trusted local PCP, rather than a distant unknown specialist off-reservation.”
The benefits of the program are paying off, according to Mandal. Based on pre- and post-curriculum surveys, PCPs who participated in RA ECHO demonstrated significant improvements in their medical knowledge about RA, as well as in their self-reported confidence in diagnosis and managing RA.
In addition, data from programs like RA ECHO can help inform public policy pertaining to care among Native populations.
“It is important that we advocate for data-driven policies that improve the health of Native Americans and reduce health disparities,” Yazdany said. “We need more federal and state programs that directly provide resources for rheumatology clinical care, public health awareness about rheumatic diseases, and rheumatology research in tribal nations.”
Although Lozada also advocates for public policy initiatives, she stressed that the personal needs of individuals on the reservations and among Native populations should always be kept in mind.
“I may slowly grow more accustomed with prescribing biologic agents for my patients living with rheumatic diseases, but unless I understand more about the context that my patients live in, their family structure and their culture, I can never truly be a good doctor for/with them,” Lozada said. “Hearing from traditional practitioners about their perspectives on chronic illnesses, autoimmune disease, and when diseases run in families can be illuminating and help providers individualize the counseling, education and discussion with the individual in front of them.”
Looking to the future, the group hopes to study the impact of the RA ECHO on patient outcomes such as time-to-diagnosis of RA, medication prescribing practices, safety measures such as appropriate vaccination and lab monitoring, disease activity scores, and patient reported outcomes.
“However, for now, we are focusing entirely on building trust before asking for any personal health data,” Mandal said. “We try to approach our work from a position of humble inquiry. This means asking questions and being open to the answers.”
References:
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