Patients suffer from the Indian Health Service's underfunded and complicated program

Arielle Zionts and Katheryn Houghton
| KFF Health News

When the Indian Health Service can’t provide healthcare to Native Americans, the federal agency can send them elsewhere. But each year, it rejects tens of thousands of requests to fund these 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 operated by tribes. In reality, the agency is chronically underfunded and understaffed, leading to limited medical services and leaving vast areas of the country without easy access to care.

Its purchased/referred care program aims to fill the gaps by paying outside providers for services that patients might not be able to get through an agency-funded clinic or hospital, such as cancer treatment or pregnancy care. But a lack of resources, complex rules and red tape severely hamper 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 approximately 2.6 million Native Americans and Alaska Natives.

Native Americans qualify for the recommended care program if they live on tribal land — only 13 percent do — or in their nation’s “delivery area,” which typically includes surrounding counties. Those living in another tribe’s delivery area are eligible in limited cases, while Native Americans living beyond such boundaries are excluded.

However, eligible patients are not guaranteed timely funding or help. Some of the Indian Health Service’s 170 service units are depleting their annual pool of money or reserving it for the most serious medical problems.

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

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

The problem is not new. Federal watchdog agencies have reported concerns about 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 is later approved once a health. the problem becomes more serious and more expensive.

“We try to do these preventative things 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 ensure the health and well-being of tribes in exchange for their land.

“I get my elders here saying, ‘There are treaty rights that say they should be able to provide these services to us,'” said Lyle Rutherford, a council member for the Blackfeet Nation of Northwest Montana, who said he has also worked he. with the Indian Health Service for 11 years.

Native Americans have high disease rates compared to the general population and an average age of death 14 years younger than whites. 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 forcing them to abandon healthy traditions, including bison hunting and religious ceremonies. They also cite a continued lack of health funding.

Congress has budgeted nearly $7 billion for the Indian Health Service this year, of which about $1 billion is earmarked for the Prescribed 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 meet patient needs by fiscal year 2026, including $10 billion for referral care.

Brendan White, an agency spokesman, said improving the referral care program is a primary goal of the Indian Health Service. He said about 83 percent of the health facilities he manages have been able to approve all eligible funding applications this year.

White said the agency recently improved how referral care programs prioritize those requests and is addressing staffing shortages that can slow the process. An estimated one-third of positions in the referral care program have been unfilled since June, he said.

The Indian Health Service 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 in Montana does not qualify for the recommended 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 designed to keep Indigenous people in one place, even if it means less access to jobs, education and health care.

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

“We have people living all over the country,” she said. “What are we doing? Should we sell our homes, leave our families and jobs?”

People applying for funding face such a complicated system that the Indian Health Service has created flow charts outlining the process.

Misty and Adam Heiden, of Mandan, North Dakota, have experienced this firsthand. The nearest Indian Health Service hospital no longer offers delivery services. So late last year, Misty Heiden asked the foster care program to pay for their baby to be born at an outside facility.

Heiden, 40, is a member of the Sisseton-Wahpeton Oyate, a tribe in South Dakota, but lives in the delivery area of the Standing Rock Sioux tribe. Native Americans who live in another tribe’s area, like her, 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 their grocery budget to help pay off more than $1,000 in medical bills.

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

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

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 staff said the unit only covers patients at imminent risk of death.

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

“I feel like I’m being cast aside, like I don’t matter,” Brushbreaker wrote in an appeal letter. “I beg you to reconsider.”

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

Patients said they sometimes had trouble getting to referral care departments because of staffing issues.

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 in her case, despite repeated phone calls to the reference. -care staff and in-person visits.

“I was let go,” said Conica, 58, who lives in Fort Yates, North Dakota, her tribe’s headquarters.

He 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 South Dakota’s Sisseton-Wahpeton Oyate, says the referral health care program needs more funding, but officials could also do “a better job managing -and finances”.

Some service units have large amounts of funding remaining. But it’s unclear how much of that money is unspent dollars versus allocated for approved cases that go through billing.

Meanwhile, several 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 outpatient care in other ways. This may include providing free transportation to meetings, 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 tired of fighting the system,” she said.

KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of the core operating programs at KFF — an independent source for health policy research, polling and journalism.

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