Heather Mars-Martins and her family would dive off the coast of Westerly, Rhode Island, to catch quahogs, clams native to the eastern shores long foraged by her Narragansett tribe.
Mars-Martins and her family would swim back up to their canoes and head home to make traditional chowders or shellfish pies.
But often, her diabetes complications interrupted those trips, and she’d have to race to the emergency room when her blood sugar inevitably crashed to low, dangerous levels.
“That sort of fun, activity-filled life that I always had, it slowly escaped me,” she said. “I became more aware that this disease is robbing me of some freedom.”
For the past 17 years, the tribal elder has suffered from diabetes. It runs in her family – her grandmother lost both legs to complications from the disease.
Diabetes disproportionately impacts Native American people, who are almost three times more likely to be diagnosed with diabetes than non-Hispanic whites, and are less likely to have treatment.
In 2018, American Indian and Alaska Natives were 2.3 times more likely to die from the disease, according to data from the Centers for Disease Control and Prevention.
And the year before, only 1% of Indigenous people with diabetes had foot or eye examinations, compared with 70% and 61% of white people respectively, according to the CDC. The population also is twice as likely to reach end-stage renal disease from diabetes, data shows.
Tribes, researchers and medical communities have long been tackling such health problems rooted in systemic inequities. As the pandemic hit Native people hardest, the urgency has only grown.
Karen Harrison, a lead registered nurse at the Urban Indian Health Center in California’s Alameda County, was recently diagnosed with diabetes. Harrison is of Pomo, Wintu and Paiute descent, and the disease runs in her family.
“It took something this bad to be a big voice,” Harrison said about COVID-19. “People are finally listening.”
Luohua Jiang, an associate professor of epidemiology at the University of California, Irvine School of Medicine, works on implementing evidence-based diabetes prevention and management programs in tribal clinics around the nation.
“(Diabetes) definitely increases the risk of getting serious complications when they contract the virus. Given the high prevalence of diabetes in American Indian communities, that makes things a lot worse,” said Jiang.
The Sogorea Te Land Trust, an indigenous, women-led cooperative in the San Francisco Bay Area, started a healthy food distribution program in response to the pandemic. The Bay Area has one of the largest populations of intertribal American Indians in the state, according to the Bay Area Equity Atlas.
The land trust distributes vegetables like kale, chard and onions from the community gardens, and other plants significant in indigenous cultures such as sage and angelica root. The group focuses on supporting indigenous elders and has community gardens in West and East Oakland, areas long recognized as food deserts.
“Diabetes is a really big thing in our communities,” said Robert Williamson, a steward at the land trust and enrolled member of the Navajo Nation. “Growing up here in Oakland, there’s not a lot of access to fresh, healthy foods historically, especially in the communities where a lot of Indigenous people live.”
Though one grocery store recently opened in deep East Oakland, he said, “We’ve got to look out for each other and do it ourselves.”
Research shows some people can reverse type 2 diabetes through losing weight, diet changes and exercise. Programs that resonate with Indigenous cultures are more likely to be successful compared to standardized ones, Jiang and other experts say.
At Oregon’s Cow Creek Band of Umpqua Tribe, chief health officer Dr. Sharon Stanphill was part of a steering committee for the Indian Health Service Special Diabetes Program for Indians. She tailored the federal prevention model to the tribe’s culture, environment and resources, created intensive classes and support groups, and drafted a toolkit for other tribes to follow.
Tribes across the country would mail gifts of encouragement to each other, from boxes of beef jerky to bags of rice.
“They were supporters of one another,” she said. “Tribes from Alaska would send seeds and tribes on the coast would send cranberries. We were sending all our indigenous, culturally significant foods.”
But the pandemic slowed down the program, which had been successful for many years in preventing diabetes. “Folks who wanted to get in (the program) couldn’t,” she said.
Now, there’s a backlog. Interest increased as people’s health was put in jeopardy the past year.
“We’re calling folks and we’re saying, ‘Do you really want to dedicate (time?),’ and they’re saying ‘Yes,'” Stanphill said, adding that before, people were a bit more reluctant to join.
Mars-Martins, who’s an administrative assistant at the Pequot Tribe Health Care center of the Mashantucket Pequot tribe in Connecticut, began a telehealth lifestyle and diet program through Virta Health. On the plan, which includes nutritional coaching and physician guidance, she lost 31 pounds, and for the first time in 17 years, decreased her insulin doses from six shots a day to one.
The Pequot Nation has been offering the program to members of the tribe as well as employees like Mars-Martins. Over the past two years, the Pequot Nation reduced its total medication spending by half, roughly $3,800 per patient, according to Virta Health.
The program also has been offered to tribes like the Chickasaw Nation, and participants can communicate with other members to exchange healthy recipe ideas that incorporate indigenous cuisine.
Health education specialist Jan Vasquez has directed several diabetes prevention projects in American Indian communities.
Vasquez, who is Mescalero Apache, is the research director of Pathways to American Indian & Alaska Native Wellness, a community-based health advisory board and research partnership that previously worked with the Stanford School of Medicine.
PAAW’s diabetes prevention research and programs have been funded by federal grants from the Indian Health Service and the Patient Centered Outcomes Research Institute. The programs are tailored to urban Indian people.
PAAW has been grieving a board member lost to COVID-19 last year. After taking a hiatus, the group is meeting to try to get back in action. The programs included food and exercise education, and indigenous activities like talking circles.
“The culture is protective,” Vazquez said. “There are studies … that showed just bringing back the culture in itself will reduce the rates of diabetes.”
Participants also received food vouchers for the local farmers market. “People responded. It’s not like they don’t want to eat a lot more fruits and vegetables. They just can’t afford them,” Vasquez said. “That in itself reduced the (diabetes) rates, just being able to afford them.”
She noted that many Native people live in food deserts, and those on reservations in remote rural areas have limited health care resources. “I mean, one small hospital for thousands of people,” said Vasquez.
The continued health disparities, she explained, are a product of the nation’s past abuses on the population, forced relocation to under-resourced areas and forced assimilation.
“In our community, the trauma is real,” Vasquez said. “It’s not history. It’s part of what they people lived and continue to live everyday.”