Patients suffer when Indian Health Service doesn’t pay for outside care

By Arielle Zionts and Katheryn Houghton | KFF Health News

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.

Have you had an experience navigating the Indian Health Service’s Purchased/Referred Care program that you’d like to share with KFF Health News for our reporting? Tell us here.

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