By Arielle Zionts and Katheryn Houghton for KFF Health News.
Broadcast version by Kathleen Shannon for Greater Dakota News Service reporting for the KFF Health News-Public News Service Collaboration

When the Indian Health Service can't provide medical care to Native Americans, the federal agency can refer them elsewhere. But each year, it rejects tens of thousands of requests to fund those appointments, forcing patients to go without treatment or pay daunting medical bills out of their own pockets.

In theory, Native Americans are entitled to free health care when the Indian Health Service foots the bill at its facilities or sites managed by tribes. In reality, the agency is chronically underfunded and understaffed, leading to limited medical services and leaving vast swaths of the country without easy access to care.

Its Purchased/Referred Care program aims to fill gaps by paying outside providers for services patients might be unable to get through an agency-funded clinic or hospital, such as cancer treatment or pregnancy care. But resource shortages, complex rules, and administrative fumbles severely impede access to the referral program, according to patients, elected officials, and people who work with the agency.

The Indian Health Service, part of the Department of Health and Human Services, serves about 2.6 million Native Americans and Alaska Natives.

Native Americans qualify for the referred-care program if they live on tribal land - only 13% do - or within their nation's "delivery area," which usually includes surrounding counties. Those who live in another tribe's delivery area are eligible in limited cases, while Native Americans who live beyond such borders are excluded.

Eligible patients aren't guaranteed funding or timely help, however. Some of the Indian Health Service's 170 service units exhaust their annual pool of money or reserve it for the most serious medical concerns.

Referred-care programs denied or deferred nearly $552 million in spending for about 120,000 requests from eligible patients in fiscal year 2022.

As a result, Native Americans might forgo care, increasing the risk of death or serious illness for people with preventable or treatable medical conditions.

The problem isn't new. Federal watchdog agencies have reported concerns with the program for decades.

Connie Brushbreaker, a member of the Rosebud Sioux Tribe, has been denied or waitlisted for funding at least 14 times since 2018. She said it doesn't make sense that the agency sometimes refuses to pay for treatment that will later be approved once a health problem becomes more serious and expensive.

"We try to do this preventative stuff before something gets to the point where you need surgery," said Brushbreaker, who lives on her tribe's reservation in South Dakota.

Many Native Americans say the U.S. government is violating its treaties with tribal nations, which often promised to provide for the health and welfare of tribes in return for their land.

"I keep having my elders here saying, 'There's treaty rights that say they're supposed to be able to provide these services to us,'" said Lyle Rutherford, a council member for the Blackfeet Nation in northwestern Montana who said he also worked at the Indian Health Service for 11 years.

Native Americans have high rates of diseases compared with the general population, and a median age of death that's 14 years younger than that of white people. Researchers who have studied the issue say many problems stem from colonization and government policies such as forcing Indigenous people into boarding schools and isolated reservations and making them give up healthy traditions, including bison hunting and religious ceremonies. They also cite an ongoing lack of health funding.

Congress budgeted nearly $7 billion for the Indian Health Service this year, of which roughly $1 billion is set aside for the referred-care program. A committee of tribal health and government leaders has long made funding recommendations that far exceed the agency's budget. Its latest report says the Indian Health Service needs $63 billion to cover patients' needs for fiscal year 2026, including $10 billion for referred care.

Brendan White, an agency spokesperson, said improving the referred-care program is a top goal of the Indian Health Service. He said about 83% of the health units it manages have been able to approve all eligible funding requests this year.

White said the agency recently improved how referred-care programs prioritize such requests and it is tackling staff shortages that can slow down the process. An estimated third of positions within the referred-care program were unfilled as of June, he said.

The Indian Health Service also recently expanded some delivery areas to include more people and is studying whether it can afford to create statewide eligibility in the Dakotas.

Jonni Kroll of the Little Shell Tribe of Chippewa Indians of Montana doesn't qualify for the referred-care program because she lives in Deer Park, Washington, nearly 400 miles from her tribe's headquarters.

She said tying eligibility to tribal lands echoes old government policies meant to keep Indigenous people in one place, even if it means less access to jobs, education, and health care.

Kroll, 58, said she sometimes worries about the medical costs of aging. Moving to qualify for the program is unrealistic.

"We have people that live all across the nation," she said. "What do we do? Sell our homes, leave our families and our jobs?"

People applying for funding face a system so complicated that the Indian Health Service created flowcharts outlining the process.

Misty and Adam Heiden, of Mandan, North Dakota, experienced that firsthand. Their nearest Indian Health Service hospital no longer offers birthing services. So, late last year, Misty Heiden asked the referred-care program to pay for the delivery of their baby at an outside facility.

Heiden, 40, is a member of the Sisseton-Wahpeton Oyate, a South Dakota-based tribe, but lives within the Standing Rock Sioux Tribe's delivery area. Native Americans who live in another tribe's area, as she does, are eligible if they have close ties. Even though she is married to a Standing Rock tribal member, Heiden was deemed ineligible by hospital staff.

Now, the family has had to cut into its grocery budget to help pay off more than $1,000 in medical debt.

"It was kind of a slap in the face," Adam Heiden said.

White, the Indian Health Service spokesperson, said many providers offer educational materials to help patients understand eligibility. But the Standing Rock rules, for example, aren't fully explained in its brochure.

When patients are eligible, their needs are ranked using a medical priority list.

Connie Brushbreaker's doctor at the Indian Health Service hospital in Rosebud, South Dakota, said she needed to see an orthopedic surgeon. But hospital staffers said the unit covers only patients at imminent risk of dying.

She said that, at one point, a worker at the referred-care program told her she could handle her pain, which was so intense she had to limit work duties and rely on her husband to put her hair in a ponytail.

"I feel like I am being tossed aside, like I do not matter," Brushbreaker wrote in an appeal letter. "I am begging you to reconsider."

The 55-year-old was eventually approved for funding and had surgery this July, two years after injuring her shoulder and four months after her referral.

Patients said they sometimes have trouble reaching referred-care departments due to staffing problems.

Patti Conica, a member of the Standing Rock Sioux Tribe, needed emergency care after developing a serious infection in June 2023. She said she applied for funding to cover the cost but has yet to receive a decision on her case despite repeated phone calls to referred-care staffers and in-person visits.

"I've been given the runaround," said Conica, 58, who lives in Fort Yates, North Dakota, her tribe's headquarters.

She now faces more than $1,500 in medical bills, some of which have been turned over to a collection agency.

Tyler Tordsen, a Republican state lawmaker and member of the Sisseton-Wahpeton Oyate in South Dakota, says the referred-care program needs more funding but officials could also do a "better job managing their finances."

Some service units have large amounts of leftover funding. But it's unclear how much of this money is unspent dollars versus earmarked for approved cases going through billing.

Meanwhile, more tribes are managing their health care facilities - an arrangement that still uses agency money - to try new ways to improve services.

Many also try to help patients receive outside care in other ways. That can include offering free transportation to appointments, arranging for specialists to visit reservations, or creating tribal health insurance programs.

For Brushbreaker, begging for funding "felt like I had to sell my soul to the IHS gods."

"I'm just tired of fighting the system," she said.


Arielle Zionts and Katheryn Houghton wrote this story for KFF Health News.


get more stories like this via email

By Amy Felegy for Arts Midwest.
Broadcast version by Judith Ruiz-Branch for Wisconsin News Connection reporting for the Arts Midwest-Public News Service Collaboration

Patty Loew attended five screenings of a new film this year. She wasn't joining box office masses at Wicked or Inside Out 2, but Bad River: A Story of Defiance.

The independent documentary, directed by Mary Mazzio and released in March, drew in masses of its own. AMC Theatres put it up on select big screens across the United States. Peacock started streaming it last month.

The documentary highlights longstanding issues facing the Bad River Band of Lake Superior Chippewa in northern Wisconsin. Loew 'Waswaagonokwe' (Torch Light on the Water Woman) is a citizen.

She and other Band members are interviewed in the film, which explores tragic boarding school histories and how members of the Band have faced violence and racism.

The documentary heavily focuses on the Line 5 dispute between the Band and Canadian energy company Enbridge. Loew, who recently retired as director of the Center for Native American and Indigenous Research at Northwestern University (among many other titles), addresses it in the film.

"My little tribe is standing up and saying, 'We're protecting the water, not just for us. We're protecting water for the planet.'"

Behind the Struggle

As it stands, 12 miles of a crude oil and natural gas pipeline run through Bad River land, constructed in 1953. In 2017, Bad River's tribal council voted against renewing the company's rights to use their land. It led to years of protests and activism when Enbridge refused to leave. Last summer, a federal judge gave Enbridge three years to shut down the pipeline on the reservation.

That reservation includes just under 40 miles of Lake Superior shoreline, thousands of wetland acres, and hundreds of miles of streams, rivers, and tributaries.

The documentary shows its beauty. Think grandiose drone shots and stunning water imagery.

"Bad River is where I go when I need my batteries recharged, when I need time to reflect, when I just need to get back in touch with things that make me happy," Loew says.

Last month, the Wisconsin Department of Natural Resources issued construction permits for Line 5 to reroute 41 miles south of the reservation and exit Bad River lands by 2026.

But Loew and other Band members who are interviewed in the film say that isn't enough to protect Mashiiziibii land and nearby areas from a potential pipeline burst. They want it shut down.

Enbridge lawyers and the U.S. government say they can't, citing a 1977 energy treaty with the Canadian government. But Bad River citizens say Ojibwe treaties, which established reservations and land rights, predate that by over 100 years.

"If such a rupture were to occur, nearly one million gallons of oil would spill into the river, flowing into Lake Superior and devastating the wild rice beds and fishing populations central to the Band's way of life," stated 30 Midwestern Native Nations in a letter to the White House in February.

There have been over 20 spills along the Line 5's 645-mile route since 1968, including over 14,000 gallons in Bad River land in 1972.

Despite the continued debate, Loew has hope.

"The right thing will eventually happen," she says.

"I think everyone-whether you live in a red or a blue state, or whether you are Native or non-Native-[wants] clean water and clean air, not just for themselves, but for their children and grandchildren."


Amy Felegy wrote this story for Arts Midwest.


get more stories like this via email

Arizona State University has developed a new tool that they hope will help researchers analyze connections between illnesses and health determinants within Indigenous populations. The Indigenous Health Research Dashboard is an online repository of peer-reviewed, published studies that focus on medical conditions and diseases impacting Indigenous health since 2020.

Angela Gonzales, a member of the Hopi Tribe in Northern Arizona, and an ASU professor and director of the American Indian Studies Program, said it is important for her to be a part of an initiative that aims to move the needle for Indigenous health equity. She explains that she has seen firsthand the "devastating impacts" of limited access to health care in Native communities.

"By having it public available and accessible, when tribes are interested in trying to find out the latest research, for instance let's say on COVID-19 vaccinations, they have a one stop source to be able to access a lot of that information. You can search by keywords, can search by key topics, it breaks it down into regions," she said.

Gonzales added that the dashboard is what she calls 'bio-directional,' meaning it's an effort that is driven by what tribal partners have identified as major health concerns, and said the project has also allowed students to develop their research skills and learn to synthesize information. They are currently recruiting students to be a part of the team that will continue working on the initiative next year. She hopes they're able to capture a more 'holistic' and historical view of health trends and findings.

Gonzales says they're ramping up outreach efforts to ensure public health professionals and medical providers in Indigenous communities know about the useful resource. But she adds that Native communities have already expressed the need for such information.

"If you're a tribal health professional, the opportunity to do research, it takes away from your other responsibilities that are oftentimes more pressing. By having this dashboard available, they can go right to it," she continued.

Gonzales said that Indigenous health equity has been improving in recent years, but she says as an academic she hopes researchers do better to create a stronger 'knowledge bridge,' and develop resources that are use-inspired. She feels the dashboard is a step in that direction.


get more stories like this via email

The state of Washington is helping Native Americans access health care after decades of barriers.

Health insurers have made it difficult for tribal members to get care covered, despite state and federal laws that bar this.

Vicki Lowe is the executive director of the American Indian Health Commission, which has led efforts to remove hurdles for Native Americans.

She said health insurers would try to make tribal clinics charge out-of-network rates, and wouldn't honor their referrals.

However, the Washington State Office of the Insurance Commissioner has come out with guidance to prevent this.

"Not only will tribes have more money to help pay for services for their tribal members, tribal members will get care in a more timely manner," said Lowe. "So those two things just are really important, and insurance companies have been a barrier for that for decades."

Washington is among the first states to move forward with guidance for insurers and also enforcement of the law so that insurers will stop putting up roadblocks for tribal members to get care in the state.

Todd Dixon is the deputy commissioner for consumer protection and the tribal liaison for the Office of the Insurance Commissioner.

He said one reason for releasing the guidance was that the agency has seen an uptick in complaints - the number one compliant typically coming from billing managers at clinics.

"It says, 'Hey, we have an enrolled member. He or she was seen at our clinic. We billed the insurance company. They said we're out of network and so "we're only paying 60%." And then they send a bill to the enrolled member,'" said Dixon. "It's not how it works."

The Insurance Commissioner's office has been sending notices to insurers who violate protections for Native Americans.

Lowe said before they got involved, tribes fighting with insurers on their own were getting them nowhere. But it's different with the state backing them.

"Knowing that if somebody violates these laws that they're going to get that outreach from the insurance commissioner and that they have 15 days to respond," said Dixon. "Where if a tribe asked them, they would maybe not respond or respond in some convoluted way - it's a power shift to really have the state agency behind this."