It’s not unusual for the rancher to wake up early to tend to livestock, but at 5:45 a.m. this day his cattle wouldn’t come first. For the past 3½ years, three days a week, Pieper has made an early-morning commute to get dialysis at the nearest hospital.

Pieper lives outside Hay Springs, which has 599 residents, according to a sign at the edge of town. He makes sure not to forget his chocolate-brown cowboy hat before starting up his pickup truck for the half-hour drive to Chadron.

That February morning was one of his last dialysis sessions there before the hospital shuttered the service at the end of March.

“I guess I’ll just bloat up and die in a month,” Pieper remembered thinking when he learned the center was closing, eliminating the only option near his home.

He needs dialysis to survive after cancer treatment damaged his kidneys.

Pieper and 16 other patients relied on Chadron Hospital for the life-sustaining therapy that filters waste and fluid from their blood — a job their failing kidneys could no longer do. Treatment lasts about four hours.

The closure is just one example of the long decline of health care services in rural America, where people have higher rates of many chronic conditions but less access to care than elsewhere.

The Trump administration promised to address this problem, when it launched the $50 billion federal Rural Health Transformation Program in September. It may not be enough to stop the trend.

“[President Donald] Trump says he is going to help the rural health care,” Pieper said. Dialysis “is one thing that we really need here.”

Some patients have moved to live closer to care, including several nursing home residents. Their new facilities may be farther from their families.

Others are making long drives to dialysis centers. Pieper eventually found treatment in Scottsbluff, which, with about 14,000 residents, is the biggest city in the rural Panhandle region of western Nebraska. The hour-and-a-half drive will triple his time on the road to more than nine hours each week.

Jim Wright and his wife reduced their drive time — but are spending more money — by renting a small home near Rapid City, South Dakota, and living there on weekdays so he can get dialysis. Wright said he understands that rural hospitals face financial challenges.

“But we’re talking about something that’s lifesaving. It’s not a matter of, ‘Oh, I would like to be there’” getting treatment, he said. “It’s a case that if you don’t, you die.”

An Influx of Money That’s Out of Reach

Jon Reiners, CEO of the independent, nonprofit Chadron Hospital, wrestled with the decision to end dialysis services. He and several patients said that the closure was announced as the $219 million the state will receive in first-year funding from the Rural Health Transformation Program.

But the five-year program is aimed at exploring new, creative ways to improve rural health, not to help existing services stay afloat. States can use only up to 15% of their funding to pay providers for patient care.

At least 11 states — Nebraska is not among them — have mentioned using funding for rural dialysis programs, according to a Â鶹ŮÓÅ Health News review of applications. Their ideas include starting a mobile dialysis unit and helping people get treatment at home or in long-term care facilities.

Reiners said Chadron Hospital lost $1 million a year on its dialysis service due to low reimbursement rates that didn’t cover operational costs.

The facility is a critical access hospital, a designation that allows certain small, mostly rural hospitals to get increased reimbursement rates for their Medicare patients. While most of the affected patients were on Medicare, the critical access program doesn’t cover outpatient dialysis, Reiners said.

Reiners said the hospital worked for more than a year to find solutions, such as reaching out to four private companies to potentially take over the center. But he said they all passed after realizing they would lose money.

Nephrologist Mark Unruh said the dialysis closure in Chadron reflects a wider trend of staffing and funding challenges.

“You do end up in situations where you have people who are displaced like this, and it’s just sad,” said Unruh, chair of the Internal Medicine Department at the University of New Mexico.

People in rural America face significant disparities in kidney health and treatment, published in 2024 in the American Journal of Nephrology. They’re and face after diagnosis, according to data from the National Institutes of Health.

that helps primary care doctors in rural and other underserved areas prevent end-stage renal failure.

Another idea, Unruh said, is boosting the rate of kidney transplantation for rural patients. He’s looking at whether it’s helpful to “fast-track” tests patients need to get approved for a transplant by scheduling all of them over a couple of days to limit travel time.

Unruh said the U.S. health system also needs to recruit more staff who can train patients and their caregivers to administer dialysis at home.

Exploring the Option of Home Dialysis

Rural dialysis patients are more likely than urban ones to get home dialysis, according to . In 2023, the rate was nearly 18% for rural patients and about 14% for urban ones.

One type of home dialysis requires surgery to get a catheter placed in the abdomen and . The other kind requires . The nearest facility to Chadron that offers training for the first option is in Scottsbluff. The nearest that offers training for the latter kind is three hours away in Cheyenne, Wyoming.

Pieper said doctors told him he’s not a candidate for home dialysis or a transplant. The Panhandle has a nonprofit, rural transit system, but its schedule won’t work for Pieper. He said that leaves him with no choice but to get treatment in Scottsbluff, a 200-mile round trip.

It takes Linda Simonson even longer — more than four hours round trip — to drive her husband, Alan, from their ranch to his treatment in Scottsbluff.

Linda sat in the waiting room with a yellow legal pad during one of Alan’s final treatments in Chadron. The paper was scrawled with phone numbers of politicians to call and driving distances to dialysis centers in the region. She said facilities closer to their ranch either don’t have room for new patients or lack good spots along the route to take a driving break in bad weather.

“It’s just unreal,” she said.

She said even if Alan took a bus, she’d have to ride along to support him during the trip and his treatment.

Jim and Carol Wright, the couple staying near Rapid City on weekdays, said they can’t afford to rent a second home forever. Their weekly commute is already taking a physical and emotional toll. They said they’ll eventually have to move to a bigger city, giving up the house they love in the scenic Nebraska National Forest.

Carol said she feels for the dialysis staffers in Chadron, who are wonderful.

“It just doesn’t seem right to sacrifice one unit that’s so vital,” she said while standing next to a pile of moving boxes stacked inside their rental.

The Wrights wrote letters to politicians and hospital leaders to share their concerns and ideas for keeping the unit open, including using the federal rural health funding.

Simonson said she spoke with aides for the governor and her state representatives but none of the leaders called her back.

“It feels like they don’t know that we exist at this end of the state,” she said.

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Otros conductores se detuvieron, rompieron la ventana del auto y lo llevaron a un lugar seguro. Un bombero voluntario que pasaba por allí le practicó reanimación cardiopulmonar hasta que llegó una ambulancia que trasladó a Masterson al hospital UPMC Mercy.

Pasó 18 días en la unidad de cuidados intensivos (UCI), 14 de ellos conectado a un ventilador. Desarrolló delirio, una condición común en terapia intensiva, y necesitó medicamentos antisicóticos. A pesar de tener una sonda de alimentación, perdió peso. “Sinceramente, no estábamos seguros de que fuera a sobrevivir”, dijo Ron Dedes, su cuñado.

Pero sobrevivió. Masterson fue dado de alta el 1 de febrero y regresó a casa con apoyo familiar casi constante. Trabajando con varios tipos de terapeutas, ha recuperado la capacidad de caminar, aunque aún tiene debilidad, y puede ocuparse de su cuidado personal. Su habla, que antes era confusa, ha mejorado notablemente. Puede prepararse un sándwich.

Ahora, “nuestra mayor preocupación es su memoria”, dijo Dedes. Masterson, quien hasta hace poco manejaba asuntos legales complejos, olvida conversaciones y eventos que ocurrieron unas horas antes, explicó Patti Dedes, su hermana. Aún no puede usar un microondas ni hacer una llamada telefónica.

En una entrevista, se describió a sí mismo, con precisión, como “mucho, mucho mejor de lo que estaba”, pero se equivocó al decir su edad. Las pruebas de evaluación tras el alta indicaron deterioro cognitivo y depresión.

Entre los médicos de cuidados críticos, los síntomas prolongados como los suyos se conocen como “síndrome post-cuidados intensivos” o PICS (por sus siglas en inglés). Las secuelas pueden ser físicas o psicológicas, además de cognitivas, y pueden durar meses o años.

son admitidas cada año en terapias intensivas en unos 5.000 hospitales en Estados Unidos, y las investigaciones muestran que secundarios. La edad avanzada aumenta las probabilidades.

Los pacientes y sus familias suelen sorprenderse por estas dificultades persistentes. “La creencia es que saldrán del hospital y en dos o tres semanas volverán a la normalidad”, dijo Brad Butcher, quien fue el doctor de Masterson y en la revista médica JAMA. “Eso no se corresponde con la realidad”.

De hecho, con un mayor uso de las UCI y mejores tratamientos, la población que puede enfrentar este síndrome está creciendo. La Sociedad de Medicina de Cuidados Críticos (Society of Critical Care Medicine, SCCM) estima que a la terapia intensiva.

“Todos están agradecidos de que el paciente haya sobrevivido”, dijo Lauren Ferrante, doctora en cuidados críticos pulmonares e investigadora en la Facultad de Medicina de Yale (Yale School of Medicine). “Pero ese es solo el comienzo de un largo camino de recuperación”. En un estudio de pacientes de 70 años o más, del que fue coautora, dentro de los seis meses posteriores al alta solo alrededor de la mitad .

Los pacientes de cuidados intensivos enfrentan . Los síntomas del PICS van —debilidad, dolor, neuropatía (hormigueo en brazos y piernas) y desnutrición— , principalmente ansiedad y depresión. Las como las de Masterson son comunes, incluidos problemas de memoria, atención y concentración, y lenguaje.

“Para muchas personas, sobrevivir a una enfermedad crítica es una experiencia que cambia la vida”, afirmó Butcher. Los pacientes en cuidados intensivos después de cirugías de emergencia o programadas también presentan físicos, mentales y cognitivos un año después.

Los mismos tratamientos intensivos que salvan vidas contribuyen al síndrome. Los pacientes en cuidados intensivos “tienen algún tipo de falla grave de órganos que requiere atención inmediata” y monitoreo constante, explicó Carla Sevin, doctora en cuidados críticos pulmonares que dirige el Centro de Recuperación de UCI en el Centro Médico de la Universidad de Vanderbilt.

Eso puede implicar un tubo de respiración conectado a un ventilador, lo que a su vez suele requerir medicamentos sedantes. La sedación “puede provocar delirio, y el delirio es el factor clave en los síntomas cognitivos”, dijo Butcher.

Tampoco ayuda que los pitidos constantes de los monitores y la iluminación brillante las 24 horas interrumpan el sueño, ni que las restricciones en las visitas familiares priven a los pacientes de rostros y voces tranquilizadoras.

Gregory Matthews, un contador jubilado en St. Petersburg, Florida, pasó casi un mes en una UCI tras un trasplante de pulmón en 2014. Aún recuerda con claridad sus alucinaciones, incluidas imágenes de ratones corriendo por la pared y alguien intentando incriminarlo por tráfico de drogas.

“Un día, pensé que un doctor era un asesino; podía ver el rifle”, dijo Matthews, ahora de 80 años. “Así que salté de la cama”, contó, y se arrancó las vías intravenosas. El personal tuvo que sujetarle los brazos durante varios días.

Pero la inmovilización también tiene consecuencias, ya que los pacientes pierden rápidamente masa muscular y fuerza. “Nuestros cuerpos no están hechos para estar acostados todo el día”, señaló Ferrante.

En el plano psicológico, “el trastorno de estrés postraumático es bastante común, similar al que se observa en veteranos de combate o sobrevivientes de agresión sexual”, dijo Sevin. Las familias también pueden sufrir ansiedad y depresión junto con los pacientes.

Alarmados por estos hallazgos, médicos y administradores de unos 35 hospitales en Estados Unidos han establecido , donde equipos de doctores, enfermeros, farmacéuticos, terapeutas (físicos, ocupacionales, cognitivos, del habla) y trabajadores sociales evalúan múltiples condiciones y ayudan a los pacientes a enfrentarlas.

La clínica de Vanderbilt atendió a su primer paciente en 2012. El Centro de Recuperación de Enfermedades Críticas del Centro Médico de la Universidad de Pittsburgh —fundado por Butcher en 2018— trabaja con unos 100 pacientes al año, incluido Masterson. Yale abrió su clínica en 2022.

Estas clínicas aplican seis prácticas recomendadas por la Sociedad de Medicina de Cuidados Críticos que han demostrado reducir de forma significativa los . Las medidas incluyen usar sedación más ligera, hacer que los pacientes se levanten y se muevan antes, evaluar su respiración diariamente para retirar el ventilador más pronto y eliminar restricciones en las visitas familiares.

Las clínicas suelen ofrecer grupos de apoyo para pacientes y familias. Hay evidencia de que llevar un diario de la UCI, en el que pacientes y cuidadores registran sus experiencias, y participar en ejercicio y rehabilitación física después del alta.

También se abordan conversaciones sobre qué otras opciones preferirían los pacientes si enfrentan otra enfermedad crítica, como ocurre con muchos. ¿Aceptarían nuevamente cuidados intensivos y el riesgo de sus secuelas? ¿O elegirían cuidados paliativos, que priorizan la comodidad en lugar de la curación? Algunos pacientes quedan con discapacidades permanentes después de la UCI.

Butcher, aunque señaló que estas nuevas prácticas deben ampliarse mucho más, se mostró optimista sobre el futuro de los cuidados críticos. “Vamos a encontrar mejores herramientas de diagnóstico, mejores estrategias de prevención y mejores tratamientos”, dijo.

Por ahora, sin embargo, la experiencia en la UCI sigue siendo desorientadora y a veces traumática. Cuando Butcher preguntó a 117 pacientes en su clínica post-UCI sobre qué harían en el futuro, muchos querían poner límites a las intervenciones médicas.

Alrededor de un tercio preferiría reducir el nivel de atención agresiva. De ellos, cerca de una cuarta parte optaría por órdenes de “no resucitar” y “no intubar”, y casi el 7% dijo que no querría volver nunca a una UCI.

Masterson sigue trabajando en su recuperación. “No he salido mucho”, dijo. “He estado más bien en casa”. Espera recuperar la fuerza suficiente para volver a correr; antes solía correr entre 3 y 4 millas varias veces por semana.

El futuro de los pacientes con síndrome post-UCI suele depender de su estado físico, mental y cognitivo antes de la hospitalización. La buena condición física previa de Masterson y su trabajo exigente a nivel cognitivo son factores positivos para su recuperación, señaló Butcher.

Su familia oscila entre la esperanza y la preocupación. “Quién sabe cómo estará más adelante”, dijo Dede, su cuñado. “Vamos día a día”.

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Other drivers stopped, broke the car window, and pulled him to safety. A passing volunteer firefighter performed CPR until an ambulance arrived to take Masterson to UPMC Mercy hospital.

He spent 18 days in the medical intensive care unit there, 14 of them on a ventilator. He developed delirium, a common ICU condition, and needed antipsychotic drugs. Despite a feeding tube, he lost weight. “We honestly weren’t confident that he would pull through,” said Ron Dedes, his brother-in-law.

But he did. Masterson was discharged Feb. 1 and returned home with near-constant family support. Working diligently with several kinds of therapists, he has regained his ability to walk, despite lingering weakness, and to manage his personal care. His once-garbled speech has markedly improved. He can make himself a sandwich.

Now, “our biggest concern is his memory,” Dedes said. Masterson, who so recently handled complex legal matters, forgets conversations and events that happened a few hours earlier, said Patti Dedes, his sister. He can’t yet operate a microwave or place a phone call.

In an interview, he described himself, accurately, as “much, much better than I was” — but misstated his age. Screening tests after his discharge indicated cognitive impairment and depression.

Among critical-care doctors, prolonged symptoms like his are known as “post-intensive care syndrome,” or PICS. The fallout can be physical or psychological, as well as cognitive, and can persist for months or years.

More than are admitted to intensive care across about 5,000 American hospitals, and research shows that . Older age increases the odds.

Patients and families are often startled by these continuing difficulties. “The belief is that they’ll be discharged from the hospital and in two or three weeks, they’ll be back to normal,” said Brad Butcher, who was Masterson’s doctor and in the medical journal JAMA. “That doesn’t comport with reality.”

In fact, with greater ICU use and improved treatments — the Society of Critical Care Medicine estimates that their stays — the population likely to encounter the syndrome is growing.

“Everyone is grateful that the patient has survived,” said Lauren Ferrante, a pulmonary critical-care doctor and researcher at the Yale School of Medicine. “But that’s just the start of a long road to recovery.” In a study of patients 70 and older that she co-authored, within six months after discharge only about half had .

Intensive care patients face a . PICS symptoms — weakness, pain, neuropathy (tingling in arms and legs), and malnutrition — to , primarily anxiety and depression. like Masterson’s are commonplace, including problems with memory, attention and concentration, and language.

“For many people, surviving a critical illness is a life-altering experience,” Butcher said. Patients in intensive care after emergency or elective surgery also of new physical, mental, and cognitive problems a year later.

The same aggressive treatments that save lives contribute to the syndrome. Intensive care patients “have some sort of dramatic organ failure that requires immediate attention” and constant monitoring, explained Carla Sevin, a pulmonary critical-care doctor who directs the ICU Recovery Center at Vanderbilt University Medical Center.

That could mean a breathing tube attached to a ventilator, which in turn often requires sedating drugs. Sedation “can precipitate delirium, and delirium is the key factor in cognitive symptoms,” Butcher said.

It doesn’t help that constant beeps and alarms from monitors and round-the-clock bright lighting disrupt sleep, and that restrictive family visiting hours deprive patients of reassuring faces and voices.

Gregory Matthews, a retired accountant in St. Petersburg, Florida, spent nearly a month in an ICU after a lung transplant in 2014. He still vividly remembers his hallucinations, including mice running across the wall and someone trying to frame him for drug running.

“One day, I thought a doctor was an assassin — I could see the rifle,” said Matthews, now 80. “So I jumped out of bed,” he said, and yanked out his IVs. The staff put his arms in restraints for days.

But immobilization exacts its own toll as patients quickly lose muscle mass and strength. “Our bodies were not meant to lie in bed all day,” Ferrante said.

Psychologically, “PTSD is pretty common, similar to what’s seen in combat veterans or sexual assault survivors,” Sevin said, referring to post-traumatic stress disorder. Families can suffer anxiety and depression along with the patients.

Alarmed by such discoveries, doctors and administrators at about 35 U.S. hospitals have established , where teams of doctors, nurses, pharmacists, therapists (physical, occupational, cognitive, speech), and social workers screen for a host of conditions and help guide patients through them.

Vanderbilt’s clinic saw its first patient in 2012. The Critical Illness Recovery Center at the University of Pittsburgh Medical Center, which Butcher founded in 2018, works with about 100 patients a year, including Masterson. Yale opened its clinic in 2022.

They rely on six practices recommended by the Society of Critical Care Medicine that are shown to . The measures call for changes such as using lighter sedation, getting patients up and moving earlier, testing their breathing daily to wean them from ventilators sooner, and removing restrictions on family visiting.

Clinics often offer support groups for patients and families. There’s evidence that keeping an ICU diary, in which patients and caregivers record their experiences, and engaging in exercise and physical rehabilitation after discharge.

Also on the clinics’ agenda: discussions of what other options patients might prefer if they face another critical illness, as many do. Would they agree to undergo intensive care and risk its aftereffects again? Or choose palliative care, which emphasizes comfort rather than cure? Some post-ICU patients remain permanently impaired.

Butcher, although he said that the use of the new practices needed to expand dramatically, sounded optimistic about the future of critical care. “We’re going to find better diagnostic tools, better preventive strategies, and better therapies,” he said.

For now, though, the ICU experience remains disorienting and sometimes traumatic. When Butcher asked 117 patients in his post-ICU clinic those next-time questions, many wanted to place limits on further medical interventions.

About a third would want to lower the level of aggressive care. Of those, about a quarter would want “do not resuscitate” and “do not intubate” orders, and almost 7% said they never wanted to return to an ICU.

Masterson is working hard to further his recovery. “I haven’t been out and about much,” he said. “I’ve been kind of homebound.” He hopes to get strong enough to resume running — he used to log 3 to 4 miles several times a week.

The future for patients contending with post-ICU syndrome often depends on their physical, mental, and cognitive health before their admission. Masterson’s previous fitness and cognitively demanding work bode well for his further progress, Butcher said.

His family remains alternatively hopeful and worried. “Down the road, what’s it going to be like?” Dedes, his brother-in-law, wondered. “We just take it day by day.”

The New Old Age is produced through a partnership with .

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It’s one of the many parts of the 25-bed rural hospital that need updating, former CEO Ron Wiens said.

He said the hospital, an essential service in its namesake town of nearly 800 residents in the state’s sprawling north-central high plains, needs at least $1 million for deferred maintenance, including a failing HVAC system. But the facility has struggled to make payroll each month and can’t afford to make all the fixes, Wiens said.

Built by farmers and ranchers in 1965, Big Sandy Medical Center began with nine beds. Today, a similar community effort — donations and grants to plug financial holes each year — keeps it afloat.

Wiens, who recently left his position at the hospital, said he wishes Big Sandy could get funding from Montana’s share of the $50 billion federal Rural Health Transformation Program to renovate the hospital and direct payments to help secure its future. The state received more than $233 million in its first-year award.

But the hospital may not get the kind of help he sought.

That’s because the five-year program focuses on new, creative ways to improve access to rural health care, not on directly funding services and renovations. And Montana is one of at least 10 states whose leaders say projects launched under the federal program could lead rural hospitals to cut services so they can continue to afford to offer emergency and other essential care.

Congressional Republicans created the fund as a last-minute sweetener to their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset disproportionate fallout anticipated in rural communities from the law, which is expected to slash Medicaid spending .

includes programs to make it easier for rural residents to get medical care and live a healthy lifestyle. For example, it says funding can be used to start community gardens, train paramedics to make home visits, open school-based clinics, or bring mobile clinics to rural areas.

rural Montana hospitals can receive payments for implementing recommendations, “including right-sizing select inpatient services” to match demand. In some cases, it says, right-sizing might mean “downsizing.” The state says hospitals will have input and recommendations will be specific to each facility.

“That’s what has all the hospitals on pins and needles, words like restructuring, reducing inpatient beds. Everybody is going, ‘What is this going to look like?’” Wiens said.

The Montana Department of Public Health and Human Services declined to answer questions about how it will carry out its right-sizing efforts.

A Lifeline of Care

Big Sandy cattle rancher Shane Chauvet doesn’t want any services cut.

He credits Big Sandy Medical Center with saving his life after a flying piece of metal nearly cut off his arm during a windstorm a few years back.

“I looked over, saw it coming, and whack!” Chauvet recalled.

His wife drove him to the hospital, where they frantically pounded on the ER door while Chauvet’s blood pooled on the ground.

Because of the storm, staffers worked on Chauvet with no power and no ability to summon a helicopter. He was then taken by ambulance 80 miles through intense rain and hail to a larger hospital.

Chauvet understands the state’s plan doesn’t call for eliminating emergency care, but he worries that reducing other services would set off a downward spiral for the hospital and his town.

In Oklahoma, realigning clinical services could mean “shutting down service lines,” to the federal program. And in Wyoming, any facility that receives funding must agree to “reduce unprofitable, duplicative or nonessential service lines,” .

Monique McBride, business operations administrator at the Wyoming Department of Health, said the department interprets right-sizing as helping rural hospitals provide essential services — such as emergency departments, ambulance services, and labor and delivery units — while maintaining long-term, financial stability.

“This might involve limiting some elective procedures that could be done at lower cost in higher-volume facilities. The main distinction here is time-sensitive emergencies vs. ‘shoppable’ services,” she said.

A New Lease on Life?

Seven of the 10 states — Nebraska, North Dakota, Tennessee, Kansas, Nevada, South Carolina, and Washington — where rural hospital service cuts are on the table say they’ll help pay for hospitals to convert to Rural Emergency Hospitals. The recently created federal designation requires hospitals to halt inpatient services and offers enhanced payments to help them maintain emergency and outpatient care.

At least 15 additional states wrote that they’ll use the federal funding to right-size, evaluate, or adjust services — which could mean adding or taking away services, or transitioning them to a telehealth or outpatient setting.

Brock Slabach, chief operations officer of the National Rural Health Association, said, “There’s a proper concern from rural hospital administrators that this funding is not going to where it was intended.”

He said cutting services that lose money could backfire in the long run. For example, he said, halting labor and delivery care might drive more people out of small towns, further reducing hospitals’ patient numbers and revenue.

The type of hospital services that states will assess matters, said Tony Shih, a senior adviser at the Commonwealth Fund, a nonprofit focused on making health care more equitable.

“If the end result is that high-margin services are taken away from local hospitals with nothing given back in return, it can be financially harmful,” he said.

Shih noted that states’ plans to add more outpatient care could prove beneficial for patients. It’ll take time to know which states help stabilize rural hospitals, he said.

Rural hospital leaders say they know which changes would keep their facilities open and that states shouldn’t suggest or mandate service cuts and other changes on their behalf.

Josh Hannes, who oversees rural health policy at the Colorado Hospital Association, said “top-down” directives won’t work.

He said the association’s members believe they can find efficiencies and are eager to collaborate. But “a state agency shouldn’t be making those determinations,” he said.

Hannes said members are worried Colorado’s plan to classify rural health facilities as a “hub, spoke, or telehealth node” will compel service reductions. The classification will help determine “which services are sustainable locally and which are best provided regionally or through telehealth,” .

Spokespeople for the Colorado and Oklahoma health departments said no facility will be forced to end services. But Oklahoma spokesperson Rachel Klein said some facilities might choose to do so as part of a broader effort to make sure they’re meeting community needs while remaining financially stable.

“A hospital might shift certain services to a nearby regional provider with higher patient volume and specialized staff while expanding other local services,” such as primary, outpatient, or community-based care, she said.

Wiens and Darrell Messersmith, CEO of Dahl Memorial Hospital in the southeastern Montana town of Ekalaka, said they worry the only way hospitals will get their share of funding is to cut services or become Rural Emergency Hospitals that don’t offer inpatient services.

“I would hate to see things shift toward a pack-and-ship facility,” Messersmith said. “Right now, we function quite well as an inpatient facility.”

Not all Montana health leaders are worried.

Ed Buttrey, president and CEO of the Montana Hospital Association, said he thinks his state’s plan could help rural hospitals become financially sustainable and survive Medicaid cuts. Buttrey is also a Republican state lawmaker.

Chauvet, the Big Sandy rancher, said his perspective on whether remote towns like his should have a hospital is forever changed because of his accident.

“I always would say, ‘Oh, they’re nice to have,’ but now I look at the hospital and say, ‘That’s essential to our community,’” he said.

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• (starts at 21:03).
• Read Rayasam’s “When Health Insurance Costs More Than the Mortgage.”

Â鶹ŮÓÅ Health News rural health reporter Andrew Jones discussed the spread of measles across the Carolinas on WUNC’s Due South on March 17.

• Read Jones’ “Hospitals Fighting Measles Confront a Challenge: Few Doctors Have Seen It Before.”

Céline Gounder, Â鶹ŮÓÅ Health News’ editor-at-large for public health, discussed on CBS News 24/7’s The Daily Report on March 16 how U.S. hospitals and insurers are turning to AI to settle disputes over medical claims and payments. On March 17, she outlined the court ruling blocking the Trump administration’s vaccine policy changes for children on CBS News’ CBS Mornings. Gounder also discussed Susie Wiles’ decision to stay on as White House chief of staff amid breast cancer treatment on CBS News 24/7’s The Takeout on March 16.

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Raven’s case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out — or to ensure a later “no” overrides an earlier “yes” in a different state.

This gap, along with a range of other issues related to the organ procurement system, has become a point of bipartisan congressional concern. Late last year, the House Ways and Means subcommittee on oversight examining what members described as shortcomings, including alleged consent failures.

The panel’s scrutiny of organ procurement organizations, or OPOs, and their consent practices is a first step toward a more meaningful accountability plan that could help maintain trust across the system, according to some committee staff members.

The trust in our organ procurement and transplant system “has been eroded,” said Rep. Terri Sewell of Alabama, the panel’s senior Democrat, calling for stronger transparency and oversight to rebuild public confidence.

“Respect for autonomy — our ability to make our own decisions (self-determination) — allows for both ‘yes’ and ‘no’ decisions and for changing one’s mind,” Margaret McLean, a bioethicist at Santa Clara University, said in an email.

“Medical decision-making is not well served in a context of ambiguity,” she said.

And if a donor revokes consent, she added, “revocation by that person should carry the same ethical and procedural weight as the initial authorization, perhaps more.”

Raven Kinser Changed Her Mind

Raven was 25 when she died. Her parents, Jeff and Jaime Kinser, were at home in Michigan when they received the phone call that shattered their world. They drove through the night to the Newport News hospital, where they learned Raven’s disposition had been referred to LifeNet Health, the region’s federally designated OPO. LifeNet a failing OPO by the Centers for Medicare & Medicaid Services, meaning it doesn’t meet the government’s standards for how well it finds donors and recovers usable organs for transplant compared with other organizations.

Under federal law, hospitals are required to refer deaths and imminent deaths to OPOs, which take responsibility for donation-related decisions and discussions.

OPOs occupy a hybrid position in the health care system, as private nonprofit entities that hold exclusive, federally authorized contracts to recover organs within defined regions. They are regulated by CMS and overseen by the Health Resources and Services Administration, but that oversight occurs primarily through certification standards, performance metrics, and periodic audits rather than routine public disclosure requirements. With donor registries largely managed at the state level and no unified federal reporting requirement for removals, comprehensive national data on revocations is elusive.

OPOs are meant to separate bedside care from organ procurement decisions — to help prevent conflicts of interest and preserve the trust that decisions about life-sustaining treatment are made solely in the dying patient’s interest. But the , leaving families unsure who is in control if and when conflicts arise.

The Kinsers, for instance, felt their daughter would not have wanted to go through the donation process, but, at the time, had no evidence. Jaime remembers telling her husband that Raven would have been mad at them for letting it happen. In an effort to stop it, Jaime inquired about whether she would be asked to sign a consent form. But a LifeNet staff member told her that wasn’t an option because donation was Raven’s “living will,” Jaime said. Meanwhile, Raven’s parents said, her personal effects, including her Virginia driver’s license, which bore no donor designation, had not yet been turned over to the family, leaving them no meaningful way to challenge LifeNet’s determination in real time.

Jaime struggled with this outcome, even mentioning in Raven’s obituary that she was an organ donor. “How would you try to make peace with something that you felt was so wrong but had no proof?” Jaime said.

Two months passed before the Kinsers gained possession of the license, which, as they had expected, showed that Raven had not opted to be an organ donor.

According to the Kinsers, LifeNet staff told them that Raven’s status as a registered donor was established by her designation on her older Michigan license.

An emailed statement attributed to Douglas Wilson, LifeNet executive vice president, said the OPO follows federal law on organ donation, the , and queries applicable state donor registries, relying on time stamps and governing law to determine the , legally valid expression of intent. Under that framework, a prior donor authorization remains enforceable unless a valid revocation is recorded in the regional OPO’s donor registry.

Because of privacy laws, Wilson said, LifeNet could not comment on the specifics of any individual case.

Raven Kinser’s choice not to be a donor when she applied for a Virginia license in July 2024 was not reflected in the registry LifeNet consulted, according to her parents, who said that is what the organization told them. According to Lara Malbon, executive director of Donate Life Virginia, which manages the state’s organ donor registry, if someone changes their donor status while completing a Virginia driver’s license or ID transaction, “that information is sent to our registry, and the registry is updated daily to reflect those changes.” Malbon also said Virginia’s registry includes only people who have “affirmatively said ‘yes’ to becoming an organ, eye, and tissue donor, and it retains records solely for those who have made that decision.”

The Kinsers said they were never told why Raven’s Virginia DMV record was insufficient, or how an older yes from Michigan could outweigh a newer no in Virginia.

In December, the Kinsers filed a complaint with the Health Resources and Services Administration, urging federal regulators to investigate LifeNet’s actions and require OPOs to provide families with documented proof of the donor’s current status at the time of referral. They also called for OPOs, which operate as federally designated regional monopolies but are structured as private nonprofits, to be made subject to public records laws.

When Opting Out Doesn’t Stick

Such confusion is not unique to the Kinser family. It is a consequence of the organ donation consent process in the United States.

“I have also wondered that: why there’s not just one” registry for organ donation, Jaime said. If you go to get a firearm, you have one federal registry, she said.

Here’s how the system works: Americans typically register their organ donation intentions when they apply for driver’s licenses through state DMVs, and that decision remains governed largely by state law. That has led to 50 different sets of rules and very little federal regulation of what has become an in the U.S.

In some states, a donor checkbox is a binding legal document. In other states, the same choice may have different rules about when it takes effect, what it covers, and how it can be revoked.

Those differences can be big. State rules determine whether a person’s “gift” is limited to transplantation or also includes research and education. They determine whether the donation authorization includes tissue. And they can determine what counts as a valid revocation and when it is legally recognized.

Because of the system’s fragmentation, though, signals can cross when someone changes their mind, like Raven; it’s not always reflected from one state system to another.

Under state versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent is meant to control.

“Personal autonomy is paramount to everything,” said Adam Schiavi, a neurointensivist who studies end-of-life decision-making. “If I say I want to be a donor, or if I say I don’t want to be a donor, that has to take precedence over everything else.”

But states differ in how revocation must be recorded and which registry is considered authoritative if someone has lived in more than one state. Those inconsistencies can create uncertainty when records conflict across jurisdictions.

“It has to be the most recent expression, not the most recent yes,” Schiavi said.

In Michigan, a change to someone’s donor status is reflected immediately in the secretary of state’s system, but only affirmative “yes” registrations appear in the registry. Removal information remains in internal motor vehicle records. In Virginia, the state registry includes only those who have affirmatively said “yes,” retaining records solely of donors, creating potential gaps if someone believes a DMV change alone is sufficient.

Elsewhere, processes and volumes differ sharply. New Mexico updates driver records in real time but does not transmit status changes to its donor registry. Instead, donor services receive restricted search access. The state logged nearly 15,000 removals in late 2021 and almost 30,000 in 2022. Florida, which maintains formal removal records through weekly DMV data files, reported 356,161 removals in 2020, more than 1.5 million in 2023, and over 1.2 million in 2025. Kentucky processed 847,371 donor registrations from 2020 to 2025, but only 16,043 icon removals, with registry withdrawal handled separately. In 2025, more than 570,000 Texans opted into the registry, while over 31,000 individuals requested removal.

According to a federal official who asked not to be identified for fear of professional repercussions, OPOs have been highly effective at lobbying states to broaden the definition of consent and authorization — shaping how those terms are applied, whether those statuses must be renewed, and how easy or difficult it is for someone to opt out.

In subsequent correspondence with federal officials, the Kinsers have urged reforms to prevent OPOs from relying on older registry entries when a more recent state DMV record exists, and they have called for criminal penalties in cases in which consent is knowingly misrepresented. Federal regulators have not indicated whether such proposals are under consideration.

Congress Takes a Closer Look

Ethicists have long cautioned that consent must be more than a checkbox and must remain grounded in respect for the donor-patient. In an October on organ transplantation, the American College of Physicians emphasized that clinicians’ primary duty is to the patient in their care, and that maintaining trust requires transparency and safeguards to prevent conflicts of interest from blurring that “bright line.”

Advocates say those steps leave unresolved the core problem raised by the Kinser family: the lack of a clear, legally binding way for people to say “no” and for that decision to follow them across state lines.

The said it “supports strengthening donor registries and enhancing registry interoperability to ensure that an individual’s documented donation decision is honored.” But OPOs have also argued that current policies protect donation as a legally enforceable gift and prevent families from overriding a loved one’s “yes” in the midst of grief. They argue that stronger, more durable consent helps reduce missed donations and saves lives.

Congress and federal regulators are considering changes to the nation’s organ donation system, including how consent is recorded and what should happen when a donor changes their mind.

Sen. Ron Wyden (D-Ore.) last year to create new federal standards for patient safety, transparency, and oversight of organ transplants, including a formal authorization for hospital or OPO staff to pause harvesting if there is any “clinical sign of life.”

HHS press secretary Emily Hilliard said the agency is “committed to holding organ procurement organizations accountable” and to “restoring integrity and transparency” to organ donation policy, calling reforms essential to informed consent and protecting donor rights. CMS issued related March 11, but it does not address the problems highlighted by the Kinsers’ case.

Critics of the organ transplant system say it is difficult for families to obtain documentation or independently verify how consent determinations were made in disputed cases.

HRSA has launched a sweeping modernization of the Organ Procurement and Transplantation Network, the national system that oversees organ allocation and transplant policy. Federal officials have described the overhaul as the most significant restructuring of the transplant system in decades, aimed at breaking up a long-standing contractor monopoly, strengthening patient safety oversight, and replacing aging technology infrastructure.

Central to that effort is modernizing the OPTN’s data systems: improving interoperability, audit trails, and transparency in how decisions are documented and reviewed. A more modern federal data architecture could make it easier to trace which registry was queried, what time stamp controlled, and how a consent determination was reached in disputed donations that span multiple states. But the modernization effort would not change the underlying state-by-state legal framework for donor authorization and what counts as a valid “no.”

Meanwhile, Donate Life America, a national nonprofit that supports state donor registries, also runs the , a central database that allows people to sign up as organ donors directly. Unlike many DMV systems, the national registry lets people log in at any time to view, update, or remove their registration and print proof of their decision. The group is also starting a project to let participating states send registrations directly into the national system, creating one place to track donor sign-ups and removals across state lines.

Each of the proposals comes with trade-offs, and both advocates and OPOs have raised concerns about how they would work in practice.

“Just doing a dump truck dump of information is not going to do much unless you really apply it through checking and auditing,” said Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “It could be like the IRS. They don’t have to audit everybody. Just do a spot audit once in a while.”

The Kinsers aren’t opposed to organ donation itself. They celebrated Raven’s donation in her obituary, and in their complaint to federal regulators, they wrote, “We are NOT anti-organ donation, and we will never take away the gift of life our oldest daughter gave to others. However, that was not LifeNet’s choice to make.”

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Jamie Estrada, de Albuquerque, Nuevo México, recibió en dos ocasiones inyecciones de lidocaína en la parte superior de la columna vertebral para probar si una ablación permanente del nervio trataría su dolor crónico de cuello.

El dolor desapareció hasta que el anestésico dejó de hacer efecto unas seis horas después. Lo más impactante: a su aseguradora le facturaron $28.000 por cada procedimiento de 10 minutos.

A Mark McCullick, de Longmont, Colorado, lo mandaron a hacerse una tomografía por emisión de positrones (PET) de cuerpo completo para averiguar si su cáncer de próstata había regresado. El estudio, de dos horas, no mostró evidencia de cáncer, pero la factura de $77.000 enviada a la empresa que administra su seguro lo alarmó.

La inflación médica la inflación general durante años, y las facturas de muchos procedimientos breves y de rutina llegan a decenas de miles de dólares.

Estos casos destacan las preguntas que afectan al sistema de salud estadounidense y a los pacientes atrapados en él: ¿Cuál es un precio razonable para cualquier consulta o procedimiento médico y cómo se determina? ¿Qué tanto luchan las aseguradoras, supuestas administradoras del dinero de salud que los pacientes ganan con esfuerzo, para reducir los cargos y qué tan de cerca revisan las facturas para verificar su exactitud?

Los casos de Smith, Estrada y McCullick son facturas del “chargemaster”, calculadas a partir de la lista madre de precios que los proveedores de salud asignan a los servicios.

Los pacientes que tienen seguro generalmente no las pagan. Pero son importantes porque a menudo son el punto de partida para el precio negociado que la aseguradora acepta como razonable por los servicios.

Por lo general, los pacientes son responsables de entre el 10 % y el 20 % del precio negociado, su coseguro, y cuando los precios son tan altos, esa puede ser una cifra muy grande. Además, esas tarifas negociadas son difíciles de conocer para los pacientes (hasta que reciben la factura) y parecen arbitrarias.

Además, como las aseguradoras pueden compensar gastos altos en un año aumentando las primas y los deducibles al siguiente, tienen poco incentivo para negociar con firmeza buenos acuerdos para los pacientes que cubren. Así, de forma indirecta, todos los pacientes pagan sin saberlo.

En los casos de Smith y Estrada, sus aseguradoras pagaron la mayor parte sin cuestionamientos. El Centro Médico Hershey de Penn State, que trató a Smith, recibió $61.000, o el 62% de lo que facturó. New Mexico Surgery Center Orthopaedics, que trató a Estrada, recibió $46.000, o el 82%.

La aseguradora de McCullick, en cambio, dijo que pagaría a Intermountain Health solo el 28 % de su factura de $77.000. Luego hubo otro giro: el hospital, que dijo que había obtenido una preautorización, descubrió después que el estudio no estaba cubierto. Entonces le facturó a McCullick la tarifa completa del chargemaster de $77.000 o le ofreció que podía pagar la tarifa en efectivo de $14.259.

En un comunicado enviado por correo electrónico, Chris Bond, vocero de AHIP, el principal grupo comercial de las aseguradoras de salud, responsabilizó a los hospitales por el problema y dijo que los planes están “enfocados en hacer que los beneficios y la cobertura sean lo más asequibles posible para sus miembros”.

Agregó que: “como la categoría más grande por cada dólar de prima gastado, los aumentos en el costo de la atención hospitalaria tienen un impacto desproporcionado en las primas”.

En un sistema de salud en el que los precios pueden variar de manera exponencial con poca transparencia, ¿cómo pueden los pacientes permitirse enfermarse?

“No tiene sentido”

Los estadounidenses como una de las principales prioridades para el gobierno en 2026, según una encuesta de The Associated Press-NORC, y expresaron especial preocupación por el costo, el acceso y la cobertura.

La primera administración Trump exigió a aseguradoras y hospitales que publicaran archivos con precios en efectivo, brutos y negociados para diversos artículos y servicios. Estas listas de precios sin procesar —a menudo cientos de páginas llenas de códigos de facturación médica— para los pacientes.

Cinco años después, han sido recopiladas, analizadas y ampliadas por académicos y empresas emergentes, lo que ha arrojado luz sobre las disparidades en los precios y cómo han surgido.

“Cuando miramos los datos, ya sea del chargemaster o de lo que pagaron las aseguradoras, están por todos lados; no tienen sentido”, dijo Marcus Dorstel, vicepresidente senior de operaciones de Turquoise Health, una empresa emergente de transparencia de precios con pagadores y proveedores como clientes. “La variación es enorme, incluso en una zona específica”.

Cuando investigadores de la Escuela de Salud Pública Bloomberg de Johns Hopkins analizaron los datos, descubrieron que el precio que distintas aseguradoras pagan por los mismos cargos facturados “puede ser tres o más veces diferente en el mismo hospital”, dijo Ge Bai, profesora de contabilidad en salud que participó en la investigación.

Los precios que pagan las aseguradoras se determinan por numerosos factores, incluidos los que establecen sus contratos con los sistemas de salud. Algunos planes, como el de Smith, pagan automáticamente un porcentaje de los cargos facturados por el hospital, lo que incentiva a los hospitales a aumentar sus tarifas.

 El Centro Médico Hershey aumentó sus precios para 11 códigos comunes de facturación hospitalaria en un promedio de alrededor de 30% entre 2023 y 2025, calculó para este artículo Dan Snow, científico de datos de Turquoise Health. Pero esos precios no eran muy diferentes de los de otros hospitales en Pennsylvania.

En otros casos, una aseguradora puede acordar pagar a un sistema de salud una tarifa por caso, una tarifa estándar para un tipo de atención, como una colonoscopía o una hospitalización por neumonía.

Pero hay un elemento adicional lucrativo, llamado “carve-out”, que se refiere a un beneficio específico que se negocia y se paga por separado. Por ejemplo, si el hospital utilizó medicamentos o dispositivos costosos, pueden facturarse además de la tarifa global por caso, sin límites en los recargos del hospital.

Ese fue el caso de la tomografía PET de McCullick; alrededor del 80% del cargo no fue por el estudio en sí, sino por un nuevo tipo de medicamento inyectado antes del estudio para detectar el cáncer.

La mayoría de las veces, los precios finales dependen del poder de negociación relativo de la aseguradora y el sistema de salud: ¿Cuál de las partes tiene suficiente influencia en el mercado como para retirarse si la otra no cumple con sus exigencias?

Esos factores “pueden explicar las variaciones y patrones de precios que vemos”, dijo Dorstel. “En algunos mercados, las aseguradoras fijan los precios y, en otros, los aceptan”.

Para las aseguradoras, pagar más es rentable

Las aseguradoras no tienen incentivos para bajar los precios porque los precios altos significan que “reciben una parte del pastel más grande”, dijo Bai.

Por ley, las aseguradoras deben gastar el 80 % u 85% de las primas en la atención de los pacientes. Pero cuando los precios suben, pueden trasladar el aumento a los clientes en forma de primas más altas y aun así cumplir con su obligación legal.

Así, primas más altas significan menos dinero para el paciente y más ganancias para la aseguradora.

Por cada inyección espinal que recibió Estrada, la tarifa contratada por su compañía de seguros fue de $23.237,50. El coseguro de Estrada fue de $5.166,20. Con un plan con deducible alto, se le pidió que pagara la totalidad de esa factura de más de $5.000.

Cuando llamó para cuestionar la factura, dijo que el administrador del centro quirúrgico le explicó que los cargos eran resultado de un “contrato heredado” con la aseguradora que es “ventajoso” y “favorable” para el centro.

Los cargos de New Mexico Surgery Center Orthopaedics son muchas veces mayores que los del hospital donde los médicos del centro admiten pacientes; allí, la tarifa contratada por la aseguradora de Estrada para la misma inyección es de solo $2.058,67. Y en comparación con los cerca de $20.000 que la aseguradora pagó por cada inyección de Estrada, otras aseguradoras pagan al centro alrededor de $700 por el mismo procedimiento, encontró Snow.

El centro quirúrgico forma parte de un grupo nacional que tiene más de 535 instalaciones quirúrgicas, United Surgical Partners International, que a su vez es propiedad de Tenet Healthcare, un conglomerado de salud con fines de lucro. Ese tipo de dominio del mercado puede dar a las empresas el poder de negociación para cobrar —y recibir— lo que quieran, explicó Bai.

El centro quirúrgico, United Surgical Partners International y Tenet Healthcare no respondieron a múltiples solicitudes de comentarios de Â鶹ŮÓÅ Health News.

Con cargos prenegociados, las aseguradoras tienen pocos incentivos para revisar facturas cuestionables. Cuando Smith pidió una factura detallada de su cirugía, descubrió que le habían facturado dos intervenciones: una por la extracción del embarazo ectópico y otra porque el cirujano notó signos de endometriosis y realizó una biopsia. Ambas fueron facturadas a la tarifa contratada de $37.923.

Se indignó por los cargos, que a su juicio parecían un cobro duplicado. “Fue una sola cirugía”, dijo. “Hubo una sola incisión”.

Abogada formada en la Universidad de Yale, Smith consultó las pautas federales de codificación correcta de los Centros de Servicios de Medicare y Medicaid (CMS, por sus siglas en inglés), que señalan que los dos códigos de facturación utilizados para su cirugía por lo general no pueden “facturarse juntos para el mismo encuentro con el paciente” porque uno está incluido en el otro.

Smith dijo que se comunicó con el hospital de Penn State, la aseguradora e incluso con el fiscal general del estado sin lograr una resolución. Por eso espera que, a regañadientes, tendrá que pagar el coseguro de $5.250 que el hospital y la aseguradora dicen que debe.

En respuesta a preguntas de Â鶹ŮÓÅ Health News, Scott Gilbert, vocero del sistema de salud, no respondió a los detalles específicos de este caso, pero escribió: “Penn State Health reconoce que la facturación de la atención médica puede ser confusa y a menudo abrumadora para los pacientes. El proceso implica muchos factores, incluidos el tipo de atención brindada, dónde se presta y los detalles de la cobertura de seguro del paciente”.

¿Un precio “razonable”?

Después de que un reportero envió múltiples consultas a Intermountain Health, McCullick dijo que un representante le preguntó cuál sería “una cantidad razonable para resolver la situación”.

Sara Quale, portavoz del Hospital Good Samaritan, afiliado de Intermountain donde se realizó la tomografía PET, escribió: “Lamentamos sinceramente la frustración que esta situación ha causado al señor McCullick”, y señaló que “hemos estado en contacto constante con él y continuaremos dando seguimiento según sea necesario”.

McCullick dijo que quiere pagar la parte que le corresponde, pero aún intenta determinar cuál es, sin duda menos que los distintos precios de pago directo que le han ofrecido, todos superiores a $10.000. “La naturaleza cambiante de estas cifras es sorprendente”, escribió en un correo electrónico.

En cuanto a Estrada, estaba tan molesto que decidió no seguir adelante con la ablación del nervio. Mientras lo preparaban para el procedimiento, recordó, el médico dijo que había “escuchado que podría demandar” y lo regañó por ser problemático. El hospital no respondió a una solicitud de comentarios sobre las acusaciones y Estrada dijo que nunca había amenazado con emprender acciones legales.

Estrada se bajó de la camilla y se volvió a poner la camisa. “No voy a dejar que esta persona me introduzca una aguja grande en la espalda”.

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Jamie Estrada of Albuquerque, New Mexico, twice received injections of lidocaine in his upper spine to test if a permanent nerve ablation would treat his chronic neck pain. His pain vanished — until the numbing agent wore off about six hours later. The real zinger: His insurer was billed $28,000 for each 10-minute procedure.

Mark McCullick of Longmont, Colorado, was sent for a whole-body PET scan to find out whether his prostate cancer was back. The two-hour scan showed no evidence of cancer, but the $77,000 bill sent to the company that administered his insurance alarmed him.

Medical inflation has general inflation for years, with bills for many brief, routine procedures reaching tens of thousands of dollars.

These cases highlight the questions that haunt the American health system and the patients caught in its grip: What is a reasonable price for any health care visit or procedure, and how is it determined? How hard do insurers, the purported stewards of the patient’s hard-earned health dollars, fight to lower charges, and how closely do they scrutinize bills for accuracy?

Smith, Estrada, and McCullick’s cases are all “chargemaster” bills, calculated from the master price list that health providers place on services. Patients who have insurance don’t generally pay them. But they matter because they are often the starting point for the negotiated price the insurer agrees is reasonable to pay for the services. Patients are typically responsible for 10% to 20% of the negotiated price, their coinsurance — and when prices are this high, that can be a big number. What’s more, those negotiated rates are difficult for patients to access (until they get the bill) and seemingly arbitrary.

Also, because health insurers can offset high outlays one year by raising premiums and deductibles the next, they have little incentive to bargain hard for good deals for the patients they cover. So patients all pay unknowingly, indirectly.

In the cases of Smith and Estrada, their insurers paid the majority without questions. Penn State’s Hershey Medical Center, which treated Smith, received $61,000, or 62% of what it charged. New Mexico Surgery Center Orthopaedics, which treated Estrada, received $46,000, or 82%.

McCullick’s insurer, on the other hand, said it would pay Intermountain Health just 28% of his $77,000 bill. Then came another curveball: The hospital, which said it had gotten preauthorization, discovered after the fact that his scan was not covered. So it billed McCullick the full chargemaster rate of $77,000 — or, it offered, he could pay the cash rate of $14,259.

In an emailed statement, Chris Bond, a spokesperson for AHIP, the leading trade group for health insurers, blamed hospitals for the trouble, saying that plans are “focused on making benefits and coverage as affordable as possible for their members,” and that: “As the largest single category per premium dollar spent, increases in the cost of hospital-based care have an outsized impact on premiums.”

In a health system in which prices can vary exponentially with little transparency, how can patients afford to get sick?

‘It Makes No Sense’

Americans as a top priority for government in 2026, according to an Associated Press-NORC poll, expressing particular concern about cost, access, and insurance coverage.

The first Trump administration required insurers and hospitals to publish files containing cash, gross, and negotiated prices for various items and services. These raw, machine-readable price lists — often hundreds of pages filled with medical billing codes — to patient-customers.

Five years later, they’ve been ingested, parsed, and enriched by academics and startups, shedding light on the often-shocking disparities in prices and how they’ve come to exist.

“When we look at the data, whether it’s from a chargemaster or what insurers paid, it’s all over the map — it makes no sense,” said Marcus Dorstel, senior vice president of operations at Turquoise Health, a price transparency startup with payers and providers as clients. “The variation is huge, even in a specific area.”

When researchers at the Johns Hopkins Bloomberg School of Public Health looked at the data, they discovered that the price different insurers pay for the same billed charges “can be three or more times different at the same hospital,” said Ge Bai, a professor of health care accounting who was among the researchers.

The prices insurers pay are determined by numerous factors, including what’s in their contracts with health systems. Some health plans, such as Smith’s, automatically pay a percentage of the hospital’s billed charges, incentivizing hospitals to increase their rates. Hershey Medical Center increased its prices for 11 common hospital billing codes by an average of about 30% from 2023 to 2025, Dan Snow, a data scientist at Turquoise Health, calculated for this article. But those prices were not much different than those of other hospitals in Pennsylvania.

In other cases, an insurer might agree to pay a health system a case rate — a standard rate for a type of care, say a colonoscopy or an inpatient stay for pneumonia.

But there’s a lucrative catch, called a “carve-out,” which refers to a particular benefit that’s negotiated and paid separately. If the hospital used expensive drugs or devices, for instance, they can be billed in addition to the bundled case rate, with no limits on hospital markups. That was the case with McCullick’s PET scan; about 80% of the charge was not for the scan, but for a new kind of drug injected before the scan to detect cancer.

Most often the final prices depend on the relative negotiating power of the insurer and the health system: Which side has enough market sway to walk away if the other doesn’t meet its demands?

Such factors “can explain the price variations and patterns that we see,” Dorstel said. “In some markets insurers are price-makers, and in others they are price-takers.”

For Insurers, Paying More Is Profitable

Insurers aren’t incentivized to lower prices, because high prices mean they “get a slice of a bigger pie,” Bai said.

By law, insurers must spend 80% or 85% of premiums on patient care. But when prices rise, they can pass on the increase to customers in the form of higher premium costs and still meet their legal obligation. So higher premiums mean less money for the patient and more profit for the insurer.

For each spinal injection Estrada received, his insurance company’s contracted rate was $23,237.50. Estrada’s coinsurance was $5,166.20. With a high-deductible plan, he was asked to pay all of that more than $5,000 bill.

When he called to challenge the big bill, he said, the surgery center’s administrator told him the charges were the result of a “legacy contract” with the insurer that is “advantageous” and “favorable” to the center.

New Mexico Surgery Center Orthopaedics’ charges are many times those of the hospital where the center’s doctors admit patients, for example; there, Estrada’s insurance company’s contracted rate for the same spinal injection is just $2,058.67. And compared with the roughly $20,000 the insurer paid for each of Estrada’s injections, other insurers pay the center about $700 for the same procedure, Snow found.

The surgery center is part of a national group that owns more than 535 surgical facilities, United Surgical Partners International, which in turn is owned by Tenet Healthcare, a for-profit health conglomerate. That kind of market dominance can lend companies the negotiating power to charge — and get paid — what they want, Bai said.

The surgery center, United Surgical Partners International, and Tenet Healthcare did not reply to multiple requests for comment from Â鶹ŮÓÅ Health News.

With charges prenegotiated, insurers have little incentive to scrutinize questionable bills. When Smith asked for an itemized bill for her surgery, she discovered that she had been billed for two surgeries: one for the ectopic pregnancy removal and another because the surgeon noticed signs of endometriosis and performed a biopsy. Both were billed at the contracted rate of $37,923.

She was livid at the charges, which to her seemed like double-dipping. “That was one surgery,” she said. “There was one incision.”

A Yale University-trained lawyer, Smith consulted the federal Centers for Medicare & Medicaid Services’ , which note the two billing codes used for her surgery generally can’t be “billed together for the same patient encounter” because one more or less is bundled with the other.

Smith said she reached out to the Penn State hospital, the insurer, and even the state attorney general without resolution. So she expects she will, reluctantly, have to pay the $5,250 coinsurance that the hospital and insurer say she owes.

In response to questions from Â鶹ŮÓÅ Health News, Scott Gilbert, a spokesperson for the health system, did not respond to the specifics of this case, but wrote: “Penn State Health recognizes that health care billing can be confusing and often overwhelming for patients. The process involves many factors, including the type of care provided, where it’s delivered and the details of a patient’s insurance coverage.”

A ‘Reasonable’ Price?

After a reporter sent multiple inquiries to Intermountain Health, McCullick said an agent asked him what would be “a reasonable amount to resolve the situation.”

Sara Quale, a spokesperson for Good Samaritan Hospital, the Intermountain affiliate where he got the PET scan, wrote: “We sincerely regret the frustration this situation has caused Mr. McCullick,” noting that “we have been in consistent contact with him and will continue to follow up as needed.”

McCullick said he wants to pay his fair share but is still trying to figure out what that is — certainly less than the different self-pay prices he’s been offered, which all top $10,000. “The fluid nature of these numbers is mind blowing,” he wrote in an email.

As for Estrada, he was so angry that he decided not to go ahead with the nerve ablation. While he was being prepped for the procedure, Estrada recalled, the physician said he had “heard he might sue” and chastised him for being a troublemaker. The hospital did not respond to a request for comment on the allegations, and Estrada said he had never threatened legal action.

Estrada got off the table and put his shirt back on. “I’m not going to let this person put a big needle into my back.”

Bill of the Month is a crowdsourced investigation by Â鶹ŮÓÅ Health News and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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We Have Invested Too Much To Let Research Programs Die Quietly

I have dedicated my life to research, but now that work, along with the trust, data, and progress behind it, is at risk (“NIH Grant Disruptions Slow Down Breast Cancer Research,” Feb. 3).

As a rheumatologist and researcher, I have spent decades studying lupus — a chronic autoimmune disease that can affect nearly every organ system, producing symptoms that are often unpredictable and difficult to manage. Its impact on a patient’s quality of life is profound: Nearly 90% of people with lupus report being unable to maintain full-time work, while many also face interruptions in education or career progression.

But funding uncertainty from the National Institutes of Health, the Centers for Disease Control and Prevention, and other federal programs means that the thousands of patients involved in my research, along with millions of patients nationwide, are at risk. While I appreciate the increase in lupus research funding included in the recently passed congressional funding package, funding disruptions persist nationwide, and recovery takes time.

Increased funding is not like a light switch that we can just turn back on. It will take a lot of time to recruit back those we lost. That doesn’t include the young investigators who would have entered the field and are now lost. It takes time to build back the broken trust and infrastructure needed to keep participants engaged and ensure reliable data.

Medical research connects the bedside to the database to the policymaker’s desk. Without it, we are blind to the very problems we most urgently need to solve. The window to save these programs is closing. We must act now before it’s too late.

— S. Sam Lim, Atlanta

Knocking Down Barriers to Long-Term Hospital Care

For many Americans, being released from their initial hospital stay is just the beginning of their care journey. Depending on the complexity of one’s condition and the clinical need for more specialized post-acute services such as ventilation, long-term care hospitals, or LTCHs, offer highly personalized care to individuals recovering from a catastrophic illness or injury (Broken Rehab: “They Need a Ventilator To Stay Alive. Getting One Can Be a Nightmare,” Dec. 2).

LTCHs play a critical role in the nation’s health care system by providing complex, resource-intensive care to patients leaving acute-care hospitals but who still need sustained support and treatment. Not only do LTCHs help patients who are dependent on ventilation, have complex wounds, or have multiple organ failure, they also serve as a relief valve in our nation’s hospital system by helping free up beds and resources at general hospitals.

However, the ability to access this vital form of care is becoming increasingly difficult — underscoring the need for lawmakers in Washington to act. Since 2016, over 100 LTCHs have closed due to chronic underpayments amid higher costs. This has been exacerbated by Congress’ decision to implement changes to how it reimburses LTCHs for its beneficiaries. As a result, patients have fewer options, and the facilities that remain open are often far away from home for patients and families, particularly in rural areas. Furthermore, insurance company barriers — such as prior authorization requirements put in place by Medicare Advantage plans — are creating harmful delays and denials of necessary and time-sensitive patient care. Consequently, many patients are denied access to an LTCH setting — or transferred to other post-acute care settings like rehabilitation or skilled nursing facilities that aren’t equipped to care for patients with highly complex needs like ventilation.

America’s sickest patients deserve the right level of care at the right time. As this need becomes more urgent by the day, policymakers must work to address these challenges and strengthen access to LTCHs, which help patients get transferred out of the hospital quicker, reduce hospital overcrowding, and ultimately save lives.

— Jim Prister, Chicago; president and CEO of RML Specialty Hospital; chair of the American Hospital Association’s Post-Acute Care Steering Committee

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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• Click here to hear Boyd-Barrett on .
• Read Boyd-Barrett’s “‘I Can’t Tell You’: Attorneys, Relatives Struggle To Find Hospitalized ICE Detainees.”

Céline Gounder, Â鶹ŮÓÅ Health News’ editor-at-large for public health, discussed the neurodegenerative disease ALS on CBS News’ CBS Mornings on Feb. 20.

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Â鶹ŮÓÅ Health News senior correspondent Aneri Pattani discussed Elyse Stevens, a New Orleans doctor who faced investigation because of her patient-centered approach to substance use disorders, on The Lens’ Behind The Lens podcast on Feb. 20.

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• Read Pattani’s “Inside the Battle for the Future of Addiction Medicine.”

Â鶹ŮÓÅ Health News chief rural correspondent Sarah Jane Tribble discussed major cuts to Medicaid on WBUR’s Here & Now on Feb. 19. Tribble also discussed Alabama’s plan for robotic ultrasounds on The Daily Yonder’s The Yonder Report on Feb. 19.

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• Read Tribble’s “Alabama’s ‘Pretty Cool’ Plan for Robots in Maternity Care Sparks Debate.”

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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This story can be republished for free (details).