Sylvia Billie, a program supervisor for the Navajo Nation Special Diabetes Program (NNSDP), keeps a file of success stories in her office. “We helped one young woman—she had never looked at nutrition labels before—reduce her soda drinking from about six cans per day to just one. She is cooking homemade food for the first time in her life too, instead of just eating hot Cheetos,” she proudly recalled in an interview with Rewire.News.
The NNSDP is a grantee program funded through the national Special Diabetes Program for Indians (SDPI), which was reauthorized by Congress in February for $150 million per year through September 30, 2019. Despite the reauthorization and its status as one of the most successful Native American health programs in the country, the program remains grossly underfunded, which is hampering the SDPI’s ability to continue reducing Native American and Alaska Native diabetes rates.
This population is 2.3 times more likely to receive a diabetes diagnosis than their white counterparts. Researchers have gone so far as to declare that the crisis threatens the future well-being of Native American and Alaska Natives. Native youth, in particular, are nine times more likely to be diagnosed with Type II diabetes than their white peers.
The cyclical nature of federal discretionary funding presents a particular set of challenges for SDPI. Although Congress has regularly reauthorized the program for $150 million per year since 2004, recurrent congressional battles over budgets and delays in disbursement of funds make it difficult to plan for and sustain programs. Dr. Spero Manson, a Chippewa from Turtle Mountain Reservation and the director of the Centers for American Indian and Alaska Native Health at the University of Colorado’s Anschutz Medical Campus, explained in a phone interview with Rewire.News that, “In the last year of the funding cycles, there is instability as it becomes hard to hire program staff, and tribal communities become nervous about promoting the programs.” The lack of guarantees of funding and delays in spending bills means “it’s hard to hire someone when there might not be a job in a year,” explained Connie Barker, a member of the Chickasaw Nation legislature and the tribal co-chair of the Tribal Leaders Diabetes Committee, an advisory group founded by the Indian Health Service (IHS) director.
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Established by Congress in 1997, the SDPI seeks to address the high rates of diabetes among Native Americans attributed by researchers to a variety of factors, including forcible disconnection from traditional foods (such as when the U.S. government sent Native children to boarding schools away from reservations), environmental changes that disrupted their traditional way of living, poverty, and a scarcity of grocery stores on many reservations. Between 1996 and 2013, prevention services provided by the SDPI, such as nutrition planning, exercise programs, and other health education, have helped reduce kidney failure from diabetes among the targeted population by 54 percent, according to IHS, the sharpest decline for any ethnic group in the country over the past 20 years. Despite these successes, the lack of guaranteed funding makes it hard to sustain these gains. In the fall of 2017, for example, SDPI funding was allowed to lapse, falling victim to the same partisan budget debates that led to government shutdowns earlier this year.
SDPI is a relatively tiny, and occasionally overlooked, discretionary item in the overall spending bill and has bipartisan support. It also saves Native lives across Indian Country. So frustration ran high when Congress allowed SDPI funding to lapse last fall. Connie Barker described it as “a long, drawn out process. It’s been very frustrating and we’re certainly hoping eventually we can get permanent funding.” Barker hopes that the perpetual state of uncertainty will someday be resolved with a permanent law or more stable source of outside funding, both of which she is seeking but acknowledges there is a lot of work to do.
The other problem the SDPI faces is stretching the $150 million to serve over 300 individual grantee programs across the country. Dr. Manson, who directed a coordinating center for tribal representatives to share results and feedback on the program, believes that its community-based approach is one of the keys to the success of the program, as it “empowers local communities through local adaptations, including a variety of cultural activities, various tribal ceremonies, culturally appropriate activities, and physical acts like canoeing and walks that were historical.” These programs and activities target diabetes prevention as much as treatment. For example, Cherokee Nation’s nearly 30 grantee programs have targeted pre-diabetic weight loss, leading to an 8.5 pound average weight loss among participants.
Another key to success, Dr. Manson explained, is the “rigorous evaluation of the impact the grantee programs are having on their communities, as well as efforts to make the data as publicly available as possible to key decision makers at all levels.” Using data from the grantee programs, the IHS has created two toolkits—the Diabetes Prevention Program Toolkit and the Healthy Heart Program—which are available online to help other communities implement their own programs. These two keys have helped make the program as successful as it is, but have also contributed to its funding challenges.
“It’s been such a successful program,” Barker said, “that more tribes want to come on board, but sometimes we don’t have enough money for them. I wish it was more, but we always appreciate what we get because it has saved lives.” Barker and the Tribal Leaders Diabetes Committee have recommended $200 million every funding cycle, but have yet to receive that much. While an extra $50 million would not make a significant difference in terms of long-term stability, it would allow the program to expand to new grantees and possibly increase funding to existing ones. Because it is an advisory group, the TLDC cannot directly lobby Congress, although individual tribal leaders like Barker can and do individually lobby on behalf of their tribes.
Even without budget uncertainty, programs like the Crownpoint, New Mexico outpost of the NNSDP where Billie works are sorely understaffed and desperately need more funding to continue fighting diabetes and related health issues. Individual programs like the NNSDP serve about 780,000 people per year. Divided among those 780,000 people, the annual federal funding of $150 million translates to less than $200 per person, which leaves little room for important services like nutrition and exercise education.
Billie said that on the Navajo reservation, which the U.S. Department of Agriculture has labeled a food desert, “Many Navajo kids go weeks without eating a vegetable.” Billie wishes she had the funding to start a community garden—an idea she has seen work in other places on the reservation, but one that she currently lacks the resources to achieve. The Crownpoint office also lacks a fitness specialist, a crucial role in diabetes-prevention programs. And while Congress debated whether or not to reauthorize the SDPI, Billie and other program supervisors across the country were working in limbo, unsure which of their existing services they could count on providing in the future.
Reflecting on the goals of the program and the challenges ahead, Barker hopes that the next round of funding in 2019 will bring more long-term stability to the SDPI, saying, “Two years goes fast. In the blink of an eye, we’ll be fighting for funding again.”