Two bills moving through the state Senate seek to prevent immigration enforcement officers from isolating patients from their loved ones and interfering with their ability to get legal help. Analyses for both bills cite reporting by Â鶹ŮÓÅ Health News that found family members and attorneys have faced extreme difficulty locating and supporting patients hospitalized while in immigration custody.

Â鶹ŮÓÅ Health News found that some hospitals have facilitated patient isolation through what are known as blackout policies, which can include registering people under pseudonyms, withholding their names from the hospital directory, and preventing staff from contacting patients’ relatives to let them know their location and condition.

A bill by Democratic state Sen. Caroline Menjivar of the San Fernando Valley, , would largely prohibit the use of blackout policies for patients in immigration custody and ensure they retain the right to have their families and others notified of their whereabouts and condition. Blackout policies would be allowed when the health care provider determines the patient is a credible risk to themself or others and the risk is documented in the patient’s medical record. Patients would also be allowed to receive visitors.

It seeks to address reports of Immigration and Customs Enforcement agents guarding patients in their hospital rooms while they undergo medical exams or talk with doctors, interfering with medical decisions, and pushing for patients to be discharged prematurely to detention facilities ill-equipped to provide follow-up care.

“These are actions that have no place in health care, and it is a clear violation of the patients’ rights,” Menjivar said.

Under Menjivar’s proposal, agents would not be allowed into the rooms of patients they bring in for care unless they can show legal authorization to be there. If agents remain in the room, staff would be required to ask them to leave during medical exams and patient care discussions. If agents refuse, health care facility staff would need to document it.

, authored by state Sen. Susan Rubio, a Democrat from the San Gabriel Valley, would require health care providers to inform staff and relevant volunteers to respond when patients want their families to know where they are, and to post a notice at facility entrances with information about visitation and access policies. The law already says patients can agree to have loved ones notified they’re in the hospital, and Rubio’s bill seeks to make sure staff and others know they can do that for patients in immigration custody.

The federal Department of Homeland Security, which oversees immigration enforcement, did not respond to a request for comment.

Both bills were passed by the Senate Health and Judiciary committees along party lines and will be heard next by the Senate Appropriations Committee.

More than 20 immigrant rights advocates and health care workers voiced support for strengthened protections for patients at a hearing last week.

“This state must do everything in its power to protect against these abuses and ensure detainees have the right to contact their loved ones when they are hospitalized and in critical conditions,” said Hector Pereyra, political manager with the Inland Coalition for Immigrant Justice.

However, representatives from the California Hospital Association and California Medical Association told lawmakers last week they had concerns that directing health care workers to document agents’ badge numbers and ask them to leave patients’ rooms could create conflict and pose a safety risk.

“While we understand that this is an important issue, we want to ensure the bill strikes the right balance and does not create conflicting or unclear obligations for hospitals and their staff and clinicians, particularly in real-time interactions with federal officers,” said Vanessa Gonzalez, a vice president of state advocacy for the hospital association.

Â鶹ŮÓÅ Health News reported that one man, 43-year-old Julio César Peña, was held at a hospital in Victorville for almost two weeks before his attorney and family found out where he was. Peña, who had terminal kidney disease, was shackled to his hospital bed, guarded by immigration agents, and told he wasn’t allowed to disclose his location, according to his wife. He then suffered a seizure that left him intubated and unconscious, but no one notified his family. Peña died Feb. 25, less than two months after he was released to go home.

Advocates for immigrants and health care workers, as well as lawmakers, fear similar incidents are happening around the state.

Menjivar said her bill “seeks to close the gap between existing law and practice by empowering health care provider entities with the tools to uphold the privacy, health, and visitation rights of a patient brought in under immigration custody.”

SB 915 would prohibit hospitals and clinics from allowing immigration officers to make medical decisions for the patient or provide interpretation. Health care facilities would be required to document and verify, “to the extent possible,” the identities of immigration officers; provide patients access to communication tools; and inform patients of their rights. They would also need to complete discharge planning that includes attempts to coordinate with any receiving facility, such as a detention center, to ensure patients receive follow-up care.

The bills come on the heels of legislation passed last year that sought to limit immigration enforcement at health care facilities, including by prohibiting medical establishments from allowing federal agents without a valid search warrant or court order into private areas. However, that bill did not address situations in which patients are already in immigration custody.

“ICE has instilled fear in our hospitals and has kept us from doing our job,” said SatKartar Khalsa, an emergency medicine resident at a safety net hospital in San Francisco who has treated detained patients and testified in support of SB 915. “This has all led to worse care for our patients and has added another layer of fear among health care workers.”

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But physicians, dentists, ambulance companies, and other health care providers are still taking their patients to court, a Connecticut Mirror-Â鶹ŮÓÅ Health News investigation of state legal records shows.

Lawsuits by doctors and other nonhospital providers now dominate health care collections in Connecticut, the records show, accounting for more than 80% of cases filed against patients and their families in 2024.

That’s a major reversal from just five years earlier, when hospital system lawsuits made up three-quarters of health-related collection cases in the state’s courts.

The shift is moving medical debt collections into a less regulated realm. Most hospitals, because they are tax-exempt nonprofits, must make financial aid available to low-income patients and follow federal regulations that limit aggressive collection activities. Other medical providers, such as private medical groups, are generally exempt from these rules.

The lawsuits are typically over bills of less than $3,000, but the impact on patients can be devastating. Lawsuits are among the most ruinous byproducts of a health care debt problem that burdens an estimated 100 million people in the U.S.

Lawsuits can lead to garnished wages, liens on homes, and hundreds of dollars of added debt from interest and court fees. They also pile additional financial strains on struggling families, prevent patients from getting needed care, and sap trust in medical providers.

“It’s really messed up,” said Allie Cass-Wilson, a nurse in Bristol, Connecticut, who was sued over a $1,972 debt by an OB-GYN practice where she’d been a patient years earlier. “How can they do that to people?” She did not contest the lawsuit, court records show.

Cass-Wilson, who is 36 and lives in a small apartment just off an expressway on-ramp, said she learned of the outstanding debt only when she was sued. When she tried making an appointment, she said, she was told her doctor wouldn’t see her. “They said I was blacklisted,” Cass-Wilson said. “I was so confused. I couldn’t believe that my medical provider let my care be interrupted like this.”

Cass-Wilson ultimately sought medical care elsewhere.

Radiologists, Dentists, Ambulances

Overall, CT Mirror and Â鶹ŮÓÅ Health News identified more than 16,000 health care-related debt cases in Connecticut courts from 2019 to 2024. The database was assembled from online court records with the help of January Advisors, a data science consulting firm that helped extract and sort the data.

Over the six-year period, most of Connecticut’s more than 25,000 did not pursue patients in court for outstanding balances.

But records show that more than 400 medical providers, including several hospital systems, sued their patients. Among those filing lawsuits were radiologists, anesthesiologists, eye doctors, podiatrists, allergists, and pediatricians.

Dentists, periodontists, and other dental providers filed more than 1,000 lawsuits against patients. And ambulance companies sued more than 140 people.

Med-Aid, a company based outside New Haven, Connecticut, that provides orthopedic braces and other medical supplies to patients, sued more than 400 people, the court records show. The company’s president, Frank Dilieto, did not respond to repeated interview requests.

Cass-Wilson was sued by Briar Rose Network in Bristol, Connecticut, a member of a large network of OB-GYN practices across Connecticut called Physicians for Women’s Health. The network’s members sued close to 100 patients in 2024, records show.

Paula Greenberg, CEO of Women’s Health Connecticut, a private equity-backed company affiliated with Physicians for Women’s Health that manages business operations for the network, said the lawsuits represent a small fraction of the more than 300,000 patients the network sees every year.

“This is an organization committed to patients,” Greenberg said. She noted that the group offers options to help patients pay, including installment plans and financial aid.

Geoffrey Manton, president of Naugatuck Valley Radiological Associates, said his practice also will work with people who say they can’t pay. But, he said, patients sometimes stop responding to their bills.

“Hiding from your problems isn’t going to solve them,” Manton said. “If we didn’t take any action, there could be that person that is in that late-model Mercedes that just chooses not to pay any bills.” The group sued more than 125 patients from 2019 to 2024, according to the court records.

Many medical providers say that aggressive collections stem from the growing prevalence of high-deductible health plans that leave patients with thousands of dollars of bills before their coverage kicks in.

Greenberg and Manton said each of their physician groups must collect. “This is a business,” Greenberg said. “We have to look at our operating costs.”

Critics of medical collection lawsuits note that the patients are typically sued over relatively small debts that are likely to have little impact on multimillion-dollar medical practices.

The average patient debt that members of Physicians for Women’s Health sued over in 2024 was less than $1,100, court records show. The physician group’s annual revenues are typically in the tens of millions of dollars, according to Greenberg.

Even relatively small debts — which often include interest — can place substantial burdens on families struggling to keep up with their bills, especially while dealing with a serious illness, patient advocates say.

“We don’t have a realistic choice in using health care,” said Lisa Freeman, who heads the Connecticut Center for Patient Safety and has advocated for patients struggling with medical bills. “To then get sued for it, when people have less and less funds available for anything extra, that’s very disheartening.”

A Stroke, Then a Lawsuit

Matthew Millman, 54, lost his job as an IT support worker after having a stroke. Then Meriden Imaging Center sued him over an $1,891 bill.

Millman and his wife said they tried to explain their financial situation to the center, which is affiliated with Midstate Radiology Associates, a large physician group that operates imaging centers and doctors’ offices across Connecticut.

“It was very frustrating,” said Millman, who lives in an aging apartment owned by his wife’s family in New Britain. Millman, his wife, and their teenage daughter are barely getting by on his two part-time jobs — one bagging groceries, the other helping homebound seniors. Together, the jobs pay about $1,500 a month, he said.

The imaging center, after winning the collection case against Millman, tried to garnish his wages, though that was unsuccessful because Millman had lost his IT job.

“It’s all about money,” Millman said, shaking his head. “If you are trained in helping somebody with their health, it shouldn’t be about the money first. It should be about their health.”

Court records show that Midstate Radiology, Meriden Imaging Center and affiliates filed more than 1,000 collection lawsuits against patients from 2019 to 2024, making them the most litigious nonhospital providers in the state. As is common in medical debt lawsuits, the plaintiffs prevailed in most cases, records show.

Midstate president Gary Dee, a radiologist, didn’t respond to emails and messages left at his West Hartford office.

Across town from Millman’s apartment in New Britain, Joseph Lentz lives in a cramped apartment with his wife and daughter. He used to oversee operations at a Boy Scout camp but is now unemployed. Lentz lost his job during the pandemic. The family home went into foreclosure, he said.

In 2023, Orthopedic Associates of Hartford sued Lentz over a $3,644 bill the practice said he owed after having shoulder surgery in 2018.

“I’d pay it if I could, I guess,” said Lentz, 59. “But I don’t even know where next month’s rent is coming from. I’m trying to climb out as best I can. I guess this is just one more thing to shovel in.”

The orthopedic group filed more than 580 lawsuits against patients from 2019 to 2024, prevailing in most, records show.

The medical group declined interview requests. But chief executive David Mudano said in a statement: “As an independent physician practice, we strive to balance compassion for patients with the financial responsibility required to sustain our practice.”

Old Debts and Disputed Claims

Lentz, who did not contest the lawsuit, said he has no reason to doubt he owes the debt. But in many cases reviewed by CT Mirror and Â鶹ŮÓÅ Health News and in interviews, patients being sued questioned the accuracy of their medical bills, citing care they thought health insurance should have covered or, in some cases, bills for services they never received.

This reflects with aggressive collection tactics like lawsuits when disputes over the accuracy of medical bills and delayed or denied insurance claims are so widespread in American health care.

A by the federal Consumer Financial Protection Bureau found that nearly half of the medical debt complaints fielded by the agency involved bills that consumers said were erroneous in some way or that consumers said they’d already paid.

“We know people are billed incorrectly,” said Lester Bird, who studies debt collection lawsuits at the nonprofit Pew Charitable Trusts. Bird noted that courts are ill equipped to sort through disputed medical charges or insurance claims, especially when there is little documentation in most debt collection lawsuits.

“It’s complicated before it gets to the courts,” Bird said, “and it’s very complicated when it gets into the courts.”

This can create headaches for physicians and other providers. But billing problems ultimately affect patients and their families most, said Connecticut state Sen. Saud Anwar, a Democrat who is also a physician. “Patients are left to deal with it.”

Andrew Skolnick, an attorney in Milford, outside New Haven, was sued in 2023 by an imaging center where his wife had received services in 2020.

Skolnick said that when the couple, who were covered through his job-based insurance, originally received the bill from Diagnostic Imaging of Milford, he tried to tell the imaging center it had submitted the claim to the wrong insurance plan, but he said they wouldn’t speak with him.

The center later filed the lawsuit, alleging he owed more than $2,000, plus almost $300 in interest.

Despite interview requests, officials at Diagnostic Imaging of Milford did not comment for this article.

Unlike most patients who are sued, Skolnick had the resources and expertise to contest the suit. He said he offered to pay what would have been his responsibility under the plan if the imaging center had filed his claim correctly. He ultimately settled for $1,700, court records show.

“It wasn’t a tremendous amount, but I knew that they had made a mistake,” Skolnick said. “The system is not working.”

More Protections?

Anwar, the state lawmaker and physician, expressed concern that lawsuits undermine patients’ faith in their doctors.

“It’s a sacred relationship,” he said. “If your physician, who is taking care of you, is suing you for money, that’s a problem.

Many hospitals, facing bad publicity from suing patients, have stopped taking patients to court over unpaid bills. Hospital collection lawsuits identified by CT Mirror and Â鶹ŮÓÅ Health News in Connecticut court records plunged from more than 4,900 in 2019 to fewer than 300 in 2024.

Also, in recent years, several states, including Connecticut, have expanded protections for patients with bills they can’t pay.

Connecticut now from consumer credit reports, and legislators are pushing to get hospitals to provide more financial aid to patients. Other states have restricted the use of wage garnishment and property liens to collect medical debt.

But state efforts to rein in aggressive medical debt collections have mostly focused on hospitals. That may need to change, said Connecticut state Sen. Matt Lesser, a Democrat who co-chairs the legislature’s Human Services Committee.

He is a key backer of a bill that would bar hospitals from billing patients who receive public benefits like food assistance or who make less than twice the federal poverty level, about $32,000 for an individual.

The restriction would not apply to bills from physicians and other nonhospital providers, however. “We may have to go bigger if that’s where the heart of the matter is,” Lesser said.

Connecticut Gov. Ned Lamont, a Democrat who spearheaded an initiative to for more than 150,000 state residents, also expressed concern about physicians suing the people in their care.

“Everyone should do the right thing by patients,” he said.

This article was produced in partnership with , a statewide nonprofit newsroom that covers public policy and politics.

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HAY SPRINGS, Neb.— The sun was just warming the horizon as Mark Pieper left his house near his cattle ranch on a crisp February morning.

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 .

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.

The best way to address this is to focus on prevention, Unruh said. He pointed to a 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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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.

This <a target="_blank" href="/rural-health/rural-emergency-hospitals-montana-rightsize-downsize-services-transformation-fund/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Â鶹ŮÓÅ Health News senior correspondent Renuka Rayasam discussed the Â鶹ŮÓÅ Health News series “Priced Out,” which focuses on the health insurance crisis, on An Arm and a Leg on March 19.

• (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 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 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? !

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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 (“,” 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 (: “,” 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

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Â鶹ŮÓÅ Health News Southern California correspondent Claudia Boyd-Barrett discussed how family members and lawyers of those in Immigration and Customs Enforcement custody are struggling to find them in California hospitals on CapRadio’s Insight With Vicki Gonzalez on Feb. 25.

• 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.

• .

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.

• .
• 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.

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

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Two bills moving through the state Senate seek to prevent immigration enforcement officers from isolating patients from their loved ones and interfering with their ability to get legal help. Analyses for both bills cite reporting by Â鶹ŮÓÅ Health News that found family members and attorneys have faced extreme difficulty locating and supporting patients hospitalized while in immigration custody.

Â鶹ŮÓÅ Health News found that some hospitals have facilitated patient isolation through what are known as blackout policies, which can include registering people under pseudonyms, withholding their names from the hospital directory, and preventing staff from contacting patients’ relatives to let them know their location and condition.

A bill by Democratic state Sen. Caroline Menjivar of the San Fernando Valley, , would largely prohibit the use of blackout policies for patients in immigration custody and ensure they retain the right to have their families and others notified of their whereabouts and condition. Blackout policies would be allowed when the health care provider determines the patient is a credible risk to themself or others and the risk is documented in the patient’s medical record. Patients would also be allowed to receive visitors.

It seeks to address reports of Immigration and Customs Enforcement agents guarding patients in their hospital rooms while they undergo medical exams or talk with doctors, interfering with medical decisions, and pushing for patients to be discharged prematurely to detention facilities ill-equipped to provide follow-up care.

“These are actions that have no place in health care, and it is a clear violation of the patients’ rights,” Menjivar said.

Under Menjivar’s proposal, agents would not be allowed into the rooms of patients they bring in for care unless they can show legal authorization to be there. If agents remain in the room, staff would be required to ask them to leave during medical exams and patient care discussions. If agents refuse, health care facility staff would need to document it.

, authored by state Sen. Susan Rubio, a Democrat from the San Gabriel Valley, would require health care providers to inform staff and relevant volunteers to respond when patients want their families to know where they are, and to post a notice at facility entrances with information about visitation and access policies. The law already says patients can agree to have loved ones notified they’re in the hospital, and Rubio’s bill seeks to make sure staff and others know they can do that for patients in immigration custody.

The federal Department of Homeland Security, which oversees immigration enforcement, did not respond to a request for comment.

Both bills were passed by the Senate Health and Judiciary committees along party lines and will be heard next by the Senate Appropriations Committee.

More than 20 immigrant rights advocates and health care workers voiced support for strengthened protections for patients at a hearing last week.

“This state must do everything in its power to protect against these abuses and ensure detainees have the right to contact their loved ones when they are hospitalized and in critical conditions,” said Hector Pereyra, political manager with the Inland Coalition for Immigrant Justice.

However, representatives from the California Hospital Association and California Medical Association told lawmakers last week they had concerns that directing health care workers to document agents’ badge numbers and ask them to leave patients’ rooms could create conflict and pose a safety risk.

“While we understand that this is an important issue, we want to ensure the bill strikes the right balance and does not create conflicting or unclear obligations for hospitals and their staff and clinicians, particularly in real-time interactions with federal officers,” said Vanessa Gonzalez, a vice president of state advocacy for the hospital association.

Â鶹ŮÓÅ Health News reported that one man, 43-year-old Julio César Peña, was held at a hospital in Victorville for almost two weeks before his attorney and family found out where he was. Peña, who had terminal kidney disease, was shackled to his hospital bed, guarded by immigration agents, and told he wasn’t allowed to disclose his location, according to his wife. He then suffered a seizure that left him intubated and unconscious, but no one notified his family. Peña died Feb. 25, less than two months after he was released to go home.

Advocates for immigrants and health care workers, as well as lawmakers, fear similar incidents are happening around the state.

Menjivar said her bill “seeks to close the gap between existing law and practice by empowering health care provider entities with the tools to uphold the privacy, health, and visitation rights of a patient brought in under immigration custody.”

SB 915 would prohibit hospitals and clinics from allowing immigration officers to make medical decisions for the patient or provide interpretation. Health care facilities would be required to document and verify, “to the extent possible,” the identities of immigration officers; provide patients access to communication tools; and inform patients of their rights. They would also need to complete discharge planning that includes attempts to coordinate with any receiving facility, such as a detention center, to ensure patients receive follow-up care.

The bills come on the heels of legislation passed last year that sought to limit immigration enforcement at health care facilities, including by prohibiting medical establishments from allowing federal agents without a valid search warrant or court order into private areas. However, that bill did not address situations in which patients are already in immigration custody.

“ICE has instilled fear in our hospitals and has kept us from doing our job,” said SatKartar Khalsa, an emergency medicine resident at a safety net hospital in San Francisco who has treated detained patients and testified in support of SB 915. “This has all led to worse care for our patients and has added another layer of fear among health care workers.”

This <a target="_blank" href="/health-industry/ice-custody-immigrant-patient-protection-california-legislation/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

But physicians, dentists, ambulance companies, and other health care providers are still taking their patients to court, a Connecticut Mirror-Â鶹ŮÓÅ Health News investigation of state legal records shows.

Lawsuits by doctors and other nonhospital providers now dominate health care collections in Connecticut, the records show, accounting for more than 80% of cases filed against patients and their families in 2024.

That’s a major reversal from just five years earlier, when hospital system lawsuits made up three-quarters of health-related collection cases in the state’s courts.

The shift is moving medical debt collections into a less regulated realm. Most hospitals, because they are tax-exempt nonprofits, must make financial aid available to low-income patients and follow federal regulations that limit aggressive collection activities. Other medical providers, such as private medical groups, are generally exempt from these rules.

The lawsuits are typically over bills of less than $3,000, but the impact on patients can be devastating. Lawsuits are among the most ruinous byproducts of a health care debt problem that burdens an estimated 100 million people in the U.S.

Lawsuits can lead to garnished wages, liens on homes, and hundreds of dollars of added debt from interest and court fees. They also pile additional financial strains on struggling families, prevent patients from getting needed care, and sap trust in medical providers.

“It’s really messed up,” said Allie Cass-Wilson, a nurse in Bristol, Connecticut, who was sued over a $1,972 debt by an OB-GYN practice where she’d been a patient years earlier. “How can they do that to people?” She did not contest the lawsuit, court records show.

Cass-Wilson, who is 36 and lives in a small apartment just off an expressway on-ramp, said she learned of the outstanding debt only when she was sued. When she tried making an appointment, she said, she was told her doctor wouldn’t see her. “They said I was blacklisted,” Cass-Wilson said. “I was so confused. I couldn’t believe that my medical provider let my care be interrupted like this.”

Cass-Wilson ultimately sought medical care elsewhere.

Radiologists, Dentists, Ambulances

Overall, CT Mirror and Â鶹ŮÓÅ Health News identified more than 16,000 health care-related debt cases in Connecticut courts from 2019 to 2024. The database was assembled from online court records with the help of January Advisors, a data science consulting firm that helped extract and sort the data.

Over the six-year period, most of Connecticut’s more than 25,000 did not pursue patients in court for outstanding balances.

But records show that more than 400 medical providers, including several hospital systems, sued their patients. Among those filing lawsuits were radiologists, anesthesiologists, eye doctors, podiatrists, allergists, and pediatricians.

Dentists, periodontists, and other dental providers filed more than 1,000 lawsuits against patients. And ambulance companies sued more than 140 people.

Med-Aid, a company based outside New Haven, Connecticut, that provides orthopedic braces and other medical supplies to patients, sued more than 400 people, the court records show. The company’s president, Frank Dilieto, did not respond to repeated interview requests.

Cass-Wilson was sued by Briar Rose Network in Bristol, Connecticut, a member of a large network of OB-GYN practices across Connecticut called Physicians for Women’s Health. The network’s members sued close to 100 patients in 2024, records show.

Paula Greenberg, CEO of Women’s Health Connecticut, a private equity-backed company affiliated with Physicians for Women’s Health that manages business operations for the network, said the lawsuits represent a small fraction of the more than 300,000 patients the network sees every year.

“This is an organization committed to patients,” Greenberg said. She noted that the group offers options to help patients pay, including installment plans and financial aid.

Geoffrey Manton, president of Naugatuck Valley Radiological Associates, said his practice also will work with people who say they can’t pay. But, he said, patients sometimes stop responding to their bills.

“Hiding from your problems isn’t going to solve them,” Manton said. “If we didn’t take any action, there could be that person that is in that late-model Mercedes that just chooses not to pay any bills.” The group sued more than 125 patients from 2019 to 2024, according to the court records.

Many medical providers say that aggressive collections stem from the growing prevalence of high-deductible health plans that leave patients with thousands of dollars of bills before their coverage kicks in.

Greenberg and Manton said each of their physician groups must collect. “This is a business,” Greenberg said. “We have to look at our operating costs.”

Critics of medical collection lawsuits note that the patients are typically sued over relatively small debts that are likely to have little impact on multimillion-dollar medical practices.

The average patient debt that members of Physicians for Women’s Health sued over in 2024 was less than $1,100, court records show. The physician group’s annual revenues are typically in the tens of millions of dollars, according to Greenberg.

Even relatively small debts — which often include interest — can place substantial burdens on families struggling to keep up with their bills, especially while dealing with a serious illness, patient advocates say.

“We don’t have a realistic choice in using health care,” said Lisa Freeman, who heads the Connecticut Center for Patient Safety and has advocated for patients struggling with medical bills. “To then get sued for it, when people have less and less funds available for anything extra, that’s very disheartening.”

A Stroke, Then a Lawsuit

Matthew Millman, 54, lost his job as an IT support worker after having a stroke. Then Meriden Imaging Center sued him over an $1,891 bill.

Millman and his wife said they tried to explain their financial situation to the center, which is affiliated with Midstate Radiology Associates, a large physician group that operates imaging centers and doctors’ offices across Connecticut.

“It was very frustrating,” said Millman, who lives in an aging apartment owned by his wife’s family in New Britain. Millman, his wife, and their teenage daughter are barely getting by on his two part-time jobs — one bagging groceries, the other helping homebound seniors. Together, the jobs pay about $1,500 a month, he said.

The imaging center, after winning the collection case against Millman, tried to garnish his wages, though that was unsuccessful because Millman had lost his IT job.

“It’s all about money,” Millman said, shaking his head. “If you are trained in helping somebody with their health, it shouldn’t be about the money first. It should be about their health.”

Court records show that Midstate Radiology, Meriden Imaging Center and affiliates filed more than 1,000 collection lawsuits against patients from 2019 to 2024, making them the most litigious nonhospital providers in the state. As is common in medical debt lawsuits, the plaintiffs prevailed in most cases, records show.

Midstate president Gary Dee, a radiologist, didn’t respond to emails and messages left at his West Hartford office.

Across town from Millman’s apartment in New Britain, Joseph Lentz lives in a cramped apartment with his wife and daughter. He used to oversee operations at a Boy Scout camp but is now unemployed. Lentz lost his job during the pandemic. The family home went into foreclosure, he said.

In 2023, Orthopedic Associates of Hartford sued Lentz over a $3,644 bill the practice said he owed after having shoulder surgery in 2018.

“I’d pay it if I could, I guess,” said Lentz, 59. “But I don’t even know where next month’s rent is coming from. I’m trying to climb out as best I can. I guess this is just one more thing to shovel in.”

The orthopedic group filed more than 580 lawsuits against patients from 2019 to 2024, prevailing in most, records show.

The medical group declined interview requests. But chief executive David Mudano said in a statement: “As an independent physician practice, we strive to balance compassion for patients with the financial responsibility required to sustain our practice.”

Old Debts and Disputed Claims

Lentz, who did not contest the lawsuit, said he has no reason to doubt he owes the debt. But in many cases reviewed by CT Mirror and Â鶹ŮÓÅ Health News and in interviews, patients being sued questioned the accuracy of their medical bills, citing care they thought health insurance should have covered or, in some cases, bills for services they never received.

This reflects with aggressive collection tactics like lawsuits when disputes over the accuracy of medical bills and delayed or denied insurance claims are so widespread in American health care.

A by the federal Consumer Financial Protection Bureau found that nearly half of the medical debt complaints fielded by the agency involved bills that consumers said were erroneous in some way or that consumers said they’d already paid.

“We know people are billed incorrectly,” said Lester Bird, who studies debt collection lawsuits at the nonprofit Pew Charitable Trusts. Bird noted that courts are ill equipped to sort through disputed medical charges or insurance claims, especially when there is little documentation in most debt collection lawsuits.

“It’s complicated before it gets to the courts,” Bird said, “and it’s very complicated when it gets into the courts.”

This can create headaches for physicians and other providers. But billing problems ultimately affect patients and their families most, said Connecticut state Sen. Saud Anwar, a Democrat who is also a physician. “Patients are left to deal with it.”

Andrew Skolnick, an attorney in Milford, outside New Haven, was sued in 2023 by an imaging center where his wife had received services in 2020.

Skolnick said that when the couple, who were covered through his job-based insurance, originally received the bill from Diagnostic Imaging of Milford, he tried to tell the imaging center it had submitted the claim to the wrong insurance plan, but he said they wouldn’t speak with him.

The center later filed the lawsuit, alleging he owed more than $2,000, plus almost $300 in interest.

Despite interview requests, officials at Diagnostic Imaging of Milford did not comment for this article.

Unlike most patients who are sued, Skolnick had the resources and expertise to contest the suit. He said he offered to pay what would have been his responsibility under the plan if the imaging center had filed his claim correctly. He ultimately settled for $1,700, court records show.

“It wasn’t a tremendous amount, but I knew that they had made a mistake,” Skolnick said. “The system is not working.”

More Protections?

Anwar, the state lawmaker and physician, expressed concern that lawsuits undermine patients’ faith in their doctors.

“It’s a sacred relationship,” he said. “If your physician, who is taking care of you, is suing you for money, that’s a problem.

Many hospitals, facing bad publicity from suing patients, have stopped taking patients to court over unpaid bills. Hospital collection lawsuits identified by CT Mirror and Â鶹ŮÓÅ Health News in Connecticut court records plunged from more than 4,900 in 2019 to fewer than 300 in 2024.

Also, in recent years, several states, including Connecticut, have expanded protections for patients with bills they can’t pay.

Connecticut now from consumer credit reports, and legislators are pushing to get hospitals to provide more financial aid to patients. Other states have restricted the use of wage garnishment and property liens to collect medical debt.

But state efforts to rein in aggressive medical debt collections have mostly focused on hospitals. That may need to change, said Connecticut state Sen. Matt Lesser, a Democrat who co-chairs the legislature’s Human Services Committee.

He is a key backer of a bill that would bar hospitals from billing patients who receive public benefits like food assistance or who make less than twice the federal poverty level, about $32,000 for an individual.

The restriction would not apply to bills from physicians and other nonhospital providers, however. “We may have to go bigger if that’s where the heart of the matter is,” Lesser said.

Connecticut Gov. Ned Lamont, a Democrat who spearheaded an initiative to for more than 150,000 state residents, also expressed concern about physicians suing the people in their care.

“Everyone should do the right thing by patients,” he said.

This article was produced in partnership with , a statewide nonprofit newsroom that covers public policy and politics.

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HAY SPRINGS, Neb.— The sun was just warming the horizon as Mark Pieper left his house near his cattle ranch on a crisp February morning.

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 .

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.

The best way to address this is to focus on prevention, Unruh said. He pointed to a 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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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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Â鶹ŮÓÅ Health News senior correspondent Renuka Rayasam discussed the Â鶹ŮÓÅ Health News series “Priced Out,” which focuses on the health insurance crisis, on An Arm and a Leg on March 19.

• (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 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 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? !

This <a target="_blank" href="/health-care-costs/insurers-pay-high-prices-premiums-coinsurance-cost-control-inflation-patients/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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 (“,” 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 (: “,” 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

This <a target="_blank" href="/letter-to-the-editor/reader-letters-congress-action-research-long-term-care-hospitals-march-2026/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Â鶹ŮÓÅ Health News Southern California correspondent Claudia Boyd-Barrett discussed how family members and lawyers of those in Immigration and Customs Enforcement custody are struggling to find them in California hospitals on CapRadio’s Insight With Vicki Gonzalez on Feb. 25.

• 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.

• .
• 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.

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

This <a target="_blank" href="/on-air/on-air-february-28-2026-ice-hospitalization-custody-als-substance-use-addiction/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">