IRVINE, Ky. — The giant inflatable colon loomed over the rural health clinic, pink undulations exclaiming its presence to all who passed by.
Caught by a breeze, the intestine tugged at a metal handrail where Tonya Pauley had tied it down. Those curious enough to walk inside found information about the value of screening for colon cancer, which is more prevalent in Kentucky than any other state and often treatable if detected early. Pauley, an outreach worker for the Kentucky Cancer Program, said just that afternoon she’d gotten nearly a dozen people signed up.
“Most kids see it and they think it’s a bounce house, and so they’re very disappointed,” she said, laughing. On other days, she’s out with a pair of lungs talking about lung cancer screening, but those inflatables are even more ungovernable in the wind. “Every few minutes, they would try to fly,” she said.
Kentucky is a hotbed for cancer, with the highest incidence and among the highest mortality of any state, and the people here in Estill County, in the foothills of the Appalachians, are at greater risk of dying of cancer than urban residents. This is emblematic of a staggering nationwide disparity: In recent years, cancer care has been transformed by new technologies and treatments, radically altering prognoses for patients who can access them. But those advances have not reached rural areas to the same degree. Across the U.S., people in rural areas are 20% more likely to die of cancer than people in urban areas, and that gulf is widening.
Kentucky has been trying to close this divide, with a years-long, multilayered effort that has few parallels elsewhere. Health care providers have found novel ways to engage rural residents in preventive services, vaulting the state’s overall rates of colorectal and lung cancer screening from below average to among the highest in the country. More foundationally, they’ve upped the game of rural hospitals located closest to patients, so treatments guided by the best evidence and technology are no longer out of reach. The state’s efforts have become a national model, with imitators in Iowa, Nevada, and Mississippi.
But that progress could be imperiled by the tax and domestic policy bill signed into law by President Trump earlier this month, which analyses show will reduce rural health care spending more deeply in Kentucky than in any other state. Kentucky’s expansion of Medicaid coverage in 2014, along with subsidies for the Affordable Care Act’s marketplace, helped 189,000 rural adults get health insurance. Medicaid expansion was also a boon for economically depressed areas, according to Dustin Pugel, policy director of the Kentucky Center for Economic Policy, who called it “the largest ongoing federal investment in Appalachia since the Great Society” programs enacted in the 1960s. Today in some rural hospitals, a third of services are covered by Medicaid.
Now, over the next decade, the 2025 legislation is expected to reduce Medicaid spending by $12.3 billion in Kentucky’s rural areas alone, and risks putting dozens of hospitals out of business.
“Where will those patients go?” said Mark Birdwhistell, a spokesperson for the University of Kentucky who previously worked for several Republican governors. “This is not all about dollars and cents. This is about lives.”
Collaborating with rural hospitals, rather than competing
Heading southeast from Lexington, urban fades into rural by degree. Buildings thin out and bars of cellular service drop off as the parkway climbs the Appalachian plateau and wends its way over the corrugated landscape of Eastern Kentucky’s coalfields.
Surgeon Tim Mullett has driven tens of thousands of miles on these roads. A retired colonel of the U.S. Army Reserves Medical Corps and now a medical director at the University of Kentucky’s Markey Cancer Center, he has spent much of the last decade trying to better cancer care, particularly in rural areas. In large part, he and his colleagues have been trying to tackle these disparities at the root, by improving the quality of care in facilities that are closest to rural residents.
Beginning in 2006 but accelerating after Mullett joined in 2014, the Markey Cancer Center has been recruiting hospitals into what it calls an affiliate network. Mullett and his collaborators train local staff, help the hospitals meet quality benchmarks, and enable their patients to access clinical trials for new treatments. Above all, they focus on helping the hospitals achieve accreditation from the Commission on Cancer, which signals that the hospital is adhering to evidence-based guidelines and has been shown to promote better performance and outcomes.
In the years since, the network has brought 15 rural programs to accreditation, according to Mullett, who was the chair of the Commission on Cancer for four years. “Nationally, that’s unheard of,” he said. According to a STAT analysis of data from the commission, Kentucky now has more accredited hospitals and network organizations per capita than any other state.
There’s much to love about rural life, according to Susan Reffett, director of the Markey Cancer Center’s quality assurance program, who grew up in the mountains and is along for the ride. Faith runs deep and people are kind to one another, she said. “No one is really a stranger.”
But other aspects of rurality make it harder for residents to safeguard their health. There are pockets of wealth in rural Kentucky — some stretches of the road are lined by the long white fences of tony estates — but poverty rates in rural counties are about 50% higher than in urban ones. Nearly double the share of residents are without a high school diploma, and half as many get a college degree. These socioeconomic factors influence health behaviors, like the choice to smoke, and compound the obstacles that distance poses for residents. “They may not have a car that’s able to get them three hours to Lexington,” said Mullett, or gas money for returning again and again, which cancer treatment often requires.
Rurality also impacts the care that hospitals provide. In a small facility with a single oncologist and no back-up, it may not be possible for the doctor to attend conferences and keep up with the latest research. There are fewer colleagues to consult for a second opinion. Under these conditions, when patients are more likely to get sick, to be diagnosed late, and to be offered fewer treatment options with worse outcomes, some cease seeking care altogether. “All of that has led to a sense of fatalism,” said Mullett — among both patients and providers.
So rather than trying to supplant the rural hospitals by serving rural patients directly, the Markey Cancer Center is trying to elevate those institutions. “Collaborating with the community rather than competing with the community,” as he put it.
Advanced scanners and genetic testing in the heart of Appalachia
One of the first hospitals in the network was St. Claire Regional Medical Center, in Morehead, 60 miles east of Lexington, with a population of just over 7,000. CEO Donald Lloyd Jr. credited the network with enabling St. Claire to provide better care to more patients: By leveraging the reputation and extensive resources of the Markey Cancer Center, he was able to set up PET scanning and genetic testing and recruit three oncologists. “It would be nearly impossible for a rural hospital to do that” on its own, Lloyd said.
As the hospital’s services and reputation have improved, demand has risen, too: The hospital’s cancer clinic was seeing fewer than 20 patients daily in 2019; now, it sometimes sees four times that number.
Another member of the network is the medical center in Hazard, a facility of Appalachian Regional Healthcare that was built to serve miners and their families, and was located on the site of a reclaimed strip mine. The town boomed with the expansion of coal mining in the early 20th century, but since 2014, Hazard’s seen that industry largely disappear.
“It had changed more than I expected,” said Don Stacy, who grew up in Hazard and left to train as a radiation oncologist before being recruited back in 2018. “From a health standpoint, it hasn’t changed as much as we need it to.”
Rates of smoking have come down since his teenage years, but are still high. Distance and poverty remain major obstacles for cancer patients: Some travel as much as an hour to see him, and many can’t afford the medicines he prescribes, or even adequate food.
Stacy, who some patients still address by his childhood nickname (Don-Don), proudly shows off the medical center’s high-tech equipment, like its CT scanner and linear accelerator. But he said the process of getting accredited by the Commission on Cancer focused them on the basics.
For example, patients receiving chemotherapy need more calories and have more trouble summoning the appetite to consume them. If that imbalance isn’t addressed, they lose weight, grow weak, and are sometimes hospitalized, where they risk catching a serious infection and missing further cancer treatments. “When you’re feeling bad, it’s easy to just not show up,” Stacy said. Access to expensive, state-of-the-art chemotherapies can thus be undercut by something as basic as a lack of appetite.
The medical center responded by hiring a full-time dietitian to help patients stay nourished, which reduced the number who missed follow-up visits, according to Stacy. Next, he hopes to recruit full-time social workers to treat patients’ depression and anxiety, common corollaries of a cancer diagnosis.
As genetic testing of tumors became a bigger part of cancer care, the Markey Cancer Center established a system for rural hospitals to draw on its expertise from afar, through its Molecular Tumor Board, a forum where clinicians can review their cancer cases with a multidisciplinary group of experts, who draw on the molecular tests to make treatment recommendations. From 2017 through the end of 2024, the board had reviewed 963 cases from outside the University of Kentucky, without the patients having to forgo treatment in their own communities.
Despite the different circumstances that rural hospitals face, there’s research to suggest that they are capable of giving patients care that is every bit as good as that of their urban counterparts. A 2018 study in JAMA Network Open reviewed outcomes for cancer patients enrolled in randomized controlled trials, which ensure participants get evidence-based care, wherever they are located. Among these trial participants, the researchers found, urban-rural disparities disappeared. The disparate outcomes observed outside of the trials are, the research concluded, mostly a matter of differences in the quality of care.
Mary Charlton, an epidemiologist at the University of Iowa College of Public Health who also directs the Iowa Cancer Registry, was so struck by Kentucky’s affiliate network that she obtained a grant to study the model and bring it to Iowa. What stood out to her most was the trusting relationships between the network and participating hospitals, which see the Markey Center as “really invested in their success,” and the genuine focus on improving quality of care. Iowa is now recruiting rural hospitals into its own network focused on quality improvement.
‘A success story if you ever hear one’
Tonya Pauley’s inflatable organs are another piece of Kentucky’s campaign to close the urban-rural gap, by detecting disease earlier through more frequent and targeted screenings.
A case in point is lung cancer, long one of the deadliest malignancies in the U.S., in part because it’s often diagnosed at a late stage, with the onset of symptoms like coughing and chest pain, at which point the cancer has often spread. In a landmark 2011 study, researchers showed that at-risk patients screened with low-dose CT scans could be diagnosed before symptoms appeared, cutting deaths during the study period by 20%. Most older former and current smokers should be screened annually, the U.S. Preventive Services Task Force concluded, but rural providers have been slow to adopt the recommendation.
Mullet and colleagues are trying to change that. In 2014, they developed a statewide program to educate primary care providers across the state about the recommendation, and then coached 10 facilities in underserved areas — including Hazard’s hospital — to optimize delivery of lung cancer screening. In the years since, participating facilities showed major improvements in screening patients who needed it, according to preliminary data, contributing to a rapid statewide decline in the share of lung cancer diagnosed at a late stage. The decline was fastest in Appalachia, closing some of the gap between it and urban areas.
The Hazard hospital saw the annual number of low-dose CT scans for screening more than double between 2019 and 2024, from 290 to 717. One beneficiary was 63-year-old Tim Watson, who formerly worked in a strip mine and is now employed by the hospital, helping with facilities. In the conference room where he sat for an interview, he pointed out the TVs on the wall and the keypad on the door that he had installed.
Although he’d smoked for decades and quit only after watching his uncle die of lung cancer, he wasn’t the type to seek out preventive care. “I’ve been blessed with good health my whole life,” he said. “Seldom even took a sick day.”
Last year, at the behest of his doctor, he got a low-dose CT, which showed a spot on his lung. Further investigation found it was cancer. Within weeks, he’d had surgery and begun chemo, and five months after the diagnosis, he was told he was cancer-free. “Could you do any better?” he said, still seemingly shocked. “In rural Eastern Kentucky, I mean, that’s just a success story if you ever hear one.”
This approach to lung cancer screening is rippling far beyond the participating facilities. Low-dose CT scans are still underutilized all over the country, but statewide, Kentucky has the second-highest rate of lung cancer screening for high-risk patients. Building on that success, state lawmakers created a dedicated lung cancer screening and prevention program in the Department for Public Health, and provided funding and oversight to implement the improvements statewide. The researchers involved are now taking the same approach to Nevada and Mississippi, with funding from the non-profit arm of pharmaceutical giant Bristol Myers Squibb.
Dr. Jamie Studts, a University of Colorado professor who collaborated on the project, said that improved screening wouldn’t have been impactful without also improving the quality of care at the facilities. “If you send somebody just to get crappy health care, their outcomes don’t improve in the way that if you send them to a really robust health care system.”
Improved rural care threatened by federal cuts
All of these improvements are in a perilous position after Republicans in Congress enacted their signature domestic policy and tax bill, which offsets tax cuts in large part by deeply cutting Medicaid spending.
The Kaiser Family Foundation estimated that 15% of the spending cuts — at least $155 billion over the next 10 years —will be from rural areas, far exceeding the size of a $50 billion “Rural Health Fund” the legislation created to shore up health care facilities affected by the reductions. The picture is particularly bleak for Kentucky, which expanded Medicaid under the ACA, and whose rural areas are now expected to be hit harder than those in any other state. Alice Burns, KFF’s associate director on Medicaid and the uninsured, projected the state would lose $25 billion in federal Medicaid dollars and drop insurance coverage for 200,000 people. “We’ve never before experienced cuts in federal support for health care on this scale,” she said.
Rep. Morgan McGarvey, the state’s sole Democrat in Congress, called the legislation “a slap in the face to Kentucky and all of rural America.”
University of Kentucky president Eli Capilouto issued an alarmed statement, saying the Medicaid cuts would “significantly impact our efforts to extend access — particularly among rural populations that make up so much of our patient base — and for preventive services and primary care.”
At St. Claire, where one in three patients is insured by Medicaid, the hospital had already built a 10% reduction in Medicaid reimbursement into its budget for the coming fiscal year. The biggest Medicaid cuts will not occur until 2028, which Lloyd, the CEO, said afforded some time to prepare. “We’re planning for reimbursement reductions, but we’re also planning the how-do-we-offset-those-reductions and assure access to our most vulnerable,” he said.
Mullett put on a brave face, stressing Kentucky’s strong commitment to cancer care, but Pauley, the outreach worker, was more pessimistic, recalling the days before Medicaid expansion. The difference for people who needed cancer screenings, she said, was “night and day.” Back then, she feared identifying someone who needed testing only to find out they were uninsured and would have to pay out of pocket. “It’s been huge for people. It’s not perfect, but it has been a godsend.”
This article was made possible by the National Press Club Journalism Institute Public Health Reporting Fellowship, funded by the Common Health Coalition. It was also supported by a grant from the Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.
