Two years ago, Corey Still was diagnosed with an autoimmune liver disease and faced the most significant decision of his life: go into medical debt to receive life-saving care or start planning his funeral.
When Still heard the news, he was uninsured – as he has been for most of his life.
The 34-year-old citizen of the United Keetoowah Band of Cherokee Indians has used the Indian Health Service (IHS) for his health care since he was born in W.W. Hastings Hospital in Tahlequah.
“The majority of my jobs – we've always opted out [of insurance] because we have IHS,” said Still, who lives in Norman. “… I know what that system actually represents from a sovereignty and Native perspective.”
IHS, an agency within the U.S. Department of Health and Human Services, does not act as insurance but is responsible for providing health services to American Indians and Alaska Natives. The U.S. Census Bureau counts individuals with only IHS coverage as uninsured, saying it “is not considered comprehensive.”
Still said he’s seen how insurance benefits others, but until his diagnosis, those impacts didn’t correlate with his experience as a healthy young adult.
IHS funding covers his primary care services internally and most of his specialty care needs outside the system. But he said it won’t cover the only thing that could potentially save him – a liver transplant.
American Indian and Alaska Native Oklahomans have benefited from the state’s expansion of Medicaid in 2021. The uninsured rate among Indigenous people under age 65 declined by 4.5% in a single year, from 2021 to 2022, according to Census Bureau estimates. But the population’s uninsured rate of 22.5% remains high compared to the state’s overall rate of 13.5%.
Indigenous health experts and providers say despite their outreach, people can fall through the cracks for several reasons. They face challenges navigating their options, experience financial barriers to getting insurance and, sometimes, just feel more comfortable relying on IHS than seeking external coverage to fill in gaps caused by chronic underfunding.
But for uninsured Indigenous Oklahomans like Still, having no insurance can be costly or even deadly.
'Transplant ain't cheap. Funeral's cheaper.'
There are three channels through which IHS funds and delivers services:
- Indian Health Service: Where direct services are provided through IHS-operated facilities and programs.
- Tribally Operated: Where services are provided through facilities and programs operated by tribes or tribal organizations under self-determination or self-governance agreements.
- Urban Indian Organizations: Where IHS awards funding to a nonprofit to provide services and programs in urban areas.
IHS patients are encouraged to sign up for Medicaid, Medicare or private insurance through an employer or the Affordable Care Act marketplace. Increased collections from these third parties allow IHS facilities to expand offerings and stretch the dollars they receive.
The Cherokee Nation, based in Tahlequah, operates the largest tribally operated health care system in the country. It was one of the first tribes to begin governing its own IHS programs — in the early 1990s — and now boasts 11 health care facilities across the reservation in northeast Oklahoma.
Cherokee Nation Health Services’ Chief Operating Officer Brian Hail said the tribe reinvests its third-party revenue into bringing more specialists to its patients, including cardiology, neurology and stroke care. In the past, patients who needed a specialist were often transferred to other providers in larger cities, the Cherokee Nation citizen said.
An IHS program that pays outside providers for services when they’re unavailable through its facilities aims to fill in the gaps. Called the Purchased/Referred Care Program, it operates on limited funds appropriated by Congress and serves Native Americans who live on tribal land or in designated delivery areas.
IHS says it is the “payer of last resort” for referred cases, meaning all other resources must be used first. Referrals must be authorized for payment and are not always approved.
For uninsured patients, limited access to specialty care has created complications.
Still said he broke his ankle at 16 and was taken to an IHS emergency department. His ability to obtain care was tied to an on-call orthopedic surgeon who was out for a couple of weeks.
He was given two options: wait for the surgeon’s return, when it was likely his ankle would need to be re-broken, or have it amputated.
“I remember me and my mom sitting there,” Still said. “Both of us on cue started yelling — one of us yelling in Cherokee, one of us yelling in English — switching back and forth.”
Fortunately, his emergency referral request was approved, and he was sent to a surgeon about an hour away in Tulsa.
“That's the reality. … Is it cheaper to get cured, or is it cheaper to deal with the consequences?” Still said.
But things have improved, he said. He receives primary care at the Absentee Shawnee Tribe Little Axe Health Center. Through a referral from his primary care provider, he can see a local gastroenterologist, pulmonologist and hepatologist to manage his disease.
He does have to go through a multi-step process each time he needs outside services. He has one or two active referrals open at any given time.
If a referral is denied, his care is delayed. But it’s rare he can’t resolve a denial, he said. The referral program helps him manage his disease, such as by having pounds of fluid removed from his lungs and abdomen.
“My current doctor told me, ‘Well, I don't want to put a timeline on it. You could go for a long time before you finally succumb to this,’” Still said. “But … the only manageable, life-continuing process would be a transplant.”
The total estimated cost for a liver transplant exceeds $1 million.
Patients with comprehensive health insurance can still incur significant out-of-pocket expenses. Still was told he could be a prime transplant candidate, but he said the financial burden would be too heavy.
His current job doesn’t offer insurance, and he doesn’t qualify for Medicaid or marketplace subsidies. The insurance plans he looked at with IHS staff were too expensive and would still leave him with high out-of-pocket costs. He said he doesn’t want to gamble leaving his family in debt if something goes wrong.
“Transplant ain’t cheap,” Still said. “Funeral’s cheaper.”
Alternatives for the uninsured
Still’s case isn’t unique. Nearly 58,000 American Indian and Alaska Native Oklahomans are counted among the uninsured and risk failing to get the care they need.
At IHS facilities, patient benefits coordinators work to identify and help them. Coordinators educate patients on coverage and alternative resources and assist them with insurance applications, said Keri Harjo, director of patient resource services at the Oklahoma City Indian Clinic and citizen of the Muscogee Nation.
Of the clinic’s patients, 64% have private insurance, 17% are on Medicaid, 3% have Medicare and 15% are uninsured.
Harjo said American Indians and Alaskan Natives face unique disparities, with a lower life expectancy and disproportionate disease burden. Oklahoma’s health care systems are performing poorly among people from all racial and ethnic backgrounds, a Commonwealth Fund study found. Experts say major factors are high poverty rates and a large number of uninsured individuals.
Coordinators work to fill in the gaps amid chronic underfunding and limited services, Harjo said.
“We try to touch as many people as possible,” said Brandi Meeks, the clinic’s lead benefits coordinator and citizen of the Kiowa Tribe of Oklahoma.
Harjo said a common misconception is that IHS equals insurance.
“It absolutely does not,” Harjo said.
Michelle Dennison is the clinic’s vice president of policy and prevention, and a citizen of the Osage Nation. She said she grew up without health insurance. Her dad refused to get it, which complicated his access to care later in life. Even now, her sisters don’t carry insurance.
The trickle-down effect was that she didn’t understand the role third-party insurers play in allowing IHS to expand its care for patients – until she started working for a tribal health system.
“Our benefits coordinators do a really good job trying to paint that picture,” she said. “Yes, we’re going to provide what services we can to you. But … the quality of care is going to go down the less resources you have.”
Yvonne Myers, an ACA and Medicaid consultant for the Citizen Potawatomi Nation Health Services, also said she often speaks with people who don’t enroll in their employer’s health plan because they can access many free services at IHS facilities.
Sometimes they can’t afford the premiums, asking themselves, “‘Do I put food on the table for my children, or do I have this insurance plan?’” Myers said. “People face that all the time.”
Other people just need help in learning what resources are available, said Yvonne Warrior, a patient benefits coordinator for the White Eagle Health Center in Ponca City. Warrior, a citizen of the Ponca Tribe of Oklahoma, sits down with clients over coffee and goes over options, dispelling misconceptions. The center is where she received health care growing up.
“Nowadays, I encourage our people, ‘Well, you don't forget we're here. … Let us help you out. Let's see what we can do for you,” Warrior said.
Medicaid reaches more but may face cuts
On June 30, 2020, voters approved State Question 802 to expand Medicaid eligibility to adults aged 19-64 with income up to 138% of the federal poverty level. When it took effect in 2021, the Oklahoma Health Care Authority’s tribal government relations team worked with tribal leaders and partners to educate newly eligible tribal citizens.
OHCA’s most recent self-reported racial enrollment data shows 105,856 American Indian children and adults are enrolled in Oklahoma’s Medicaid program. The child count includes the Children’s Health Insurance Program and other aid categories.
Brian Hail, of Cherokee Nation Health Services, said it’s important to note the federal government’s share of Medicaid expenditures – or Federal Medical Assistance Percentage – is 100% for Medicaid-eligible American Indians and Alaskan Natives when IHS, Urbans and tribal facilities provide the care.
Hail said the Cherokee Nation Health Services is heavily reliant on Medicaid, as around 30% of its patients are on the program.
He said Medicaid expansion has benefited IHS patients. Increasing numbers of people with any health insurance generate more revenue, which can support the expansion of specialty care and facilities. An example is expanded gastrointestinal services, which has led to more patients getting screened for colon cancer.
“Because we can get those patients taken care of ourselves, internally, instead of asking them to drive a long distance to get a colonoscopy, it's easier for the patients,” Hail said.
During the last two months of 2024, Michelle Dennison, of the Oklahoma City Indian Clinic, said the clinic submitted 2,800 cases for referred care and had a 91% approval rate. She said this rate has improved and the largest contributor was Medicaid expansion.
“That doesn't mean that there weren't people that didn't get what they needed,” Dennison said. “… I mean, there's only so much money. That's why we do what we can with our benefits coordinators.”
Potential Medicaid cuts would significantly impact communities.
In April, the U.S. House of Representatives cleared a budget resolution framework, allowing it to begin drafting legislation to enact parts of President Donald Trump’s policy agenda. One provision is for a House committee to find $880 billion in savings over the next 10 years. Experts have said this would be impossible to achieve without cuts to Medicaid.
Funding cuts could lead to a reduction in services – especially for specialty care – and longer wait times, Hail said.
One of the best ways to lower the uninsured rate is through economic development so more people can get health insurance through their employers, Hail said. Preserving Medicaid expansion and the 100% federal share of Medicaid costs is also crucial.
“We've improved our uninsured rate a lot, but I don't know that we're happy with 20% uninsured,” Hail said. “We'd like for everybody to have health insurance.”
Approaching a ‘point of no return’
In April, Still said he and providers at Little Axe found a workaround for him to access a somewhat affordable plan he could pay for out of pocket. He’s still learning more about what it would cover but said he recently had a specialty care appointment to determine whether he’s a transplant candidate. He’s awaiting more answers.
Until then, he’s trying to stay optimistic. But he worries it might be too late. He’s gotten weaker over the past few months, and a recent hospital stay was discouraging.
“I may have reached my point of no return – that I wouldn’t be considered a viable candidate for a transplant anymore,” Still said. “That would be my luck.”
Still is the last first-language Cherokee speaker left on his grandma’s side. He got his PhD in adult and higher education in 2019 from the University of Oklahoma. He enjoys his friends and takes pride in being an uncle to many nieces and nephews, whom he considers his legacy.
The prospect of death doesn’t scare him. He said it’s just the next part of his journey, and he’s excited to see those who came before him again.
What scares him is leaving the people he loves behind.
“Will I have done enough for my nieces and nephews? Will I have done enough for my younger cousins? Will I have done enough for my siblings?” Still said.
At the least, he hopes, “I've done everything I can to prepare them, or at least leave them in a situation that's ... a little bit more manageable.”
He and his friends joke that they’ll etch the words, “I’ll rest when I’m dead” on his gravestone. So, until that day comes, he said in a social media post:
“I’m going to … live my life as best I can until I can’t no more.”
This story is part of “Uninsured in America,” a collaborative project led by Public Health Watch that focuses on life in America’s health-coverage gap and states that haven’t expanded Medicaid under the Affordable Care Act.
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