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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On vacation in Mexico last year, Michael DiPlacido passed out twice while scuba diving and again in his hotel. Back in St. Louis, doctors diagnosed him with amyotrophic lateral sclerosis, or ALS, an incurable disease that often requires mechanical ventilation.

When his son Adam DiPlacido tried to find a permanent place to care for his father, who now needed a ventilator to breathe through a tracheostomy tube, he discovered none of Missouri’s nearly 500 nursing homes could take him.

“I never thought it would be easy, but I never thought it would be this hard,” Adam said.

A Â鶹ŮÓÅ Health News investigation found widespread flaws and gaps in care for some of the country’s most debilitated people: those who cannot breathe on their own.

Spinal cord injuries, strokes, chronic obstructive pulmonary disease, and neurological diseases such as multiple sclerosis have left tens of thousands of Americans permanently dependent on ventilators. The barriers these patients face offer a stark example of how the United States’ disjointed health care system makes dealing with severe illness so much harder.

The investigation found patients are frequently stymied in efforts to get their insurers to provide appropriate home ventilators. They can end up spending hundreds of thousands of dollars for private nurses to make sure they don’t die overnight. Those who need to be in a nursing home or other health facility sometimes must move to another state, far from their families.

“There are not a lot of institutions that can manage these people,” said Jonathon Schwartz, acting chief medical officer for the Spaulding Rehabilitation Network in Boston.

Only 347 of the nation’s roughly 14,750 nursing homes have specialized units dedicated to people on ventilators, a Â鶹ŮÓÅ Health News analysis of federal data shows. Fifteen states, including Missouri, have no nursing homes with a specialized unit for ventilator care.

While nursing homes can care for residents on ventilators on their regular floors, in practice few do. From April through June, fewer than 10% of nursing homes had long-stay residents breathing with the assistance of invasive mechanical ventilators, which deliver air through a tube down the airway or via a tracheostomy, the analysis found. Fewer than 15% of nursing homes had short-stay patients on ventilators.

Many patients in nursing homes can be weaned off ventilators, but those who can’t because of their condition often spend years in hospitals, which are not designed for residency. Innovative alternatives to traditional nursing homes exist in some areas of the country, but they haven’t been widely replicated and now are at risk from steep reductions in Medicaid enacted by President Donald Trump and the Republican-controlled Congress.

“It could create a terrible scenario,” said Gene Gantt, a respiratory care consultant to states and insurers.

Many people permanently on ventilators prefer to live at home as long as they can. But care there can be perilous and pricey. Some state health programs pay for ventilator care for low-income patients, but getting enrolled can take months amid bureaucratic hurdles and waitlists.

Some insurers balk at providing advanced home ventilators — which sound alerts for collapsed lungs, airway leaks, or malfunctions and can cost more than $10,000 — until patients have lost much of their ability to breathe.

“Feeling you’re suffocating is a horrific feeling, and that feeling can go on for months and months” as ALS patients decline while sparring with insurers, said Tyler Rehbein, an assistant professor of neurology at the University of Rochester who treats ALS patients.

‘Out of Money’

David Goldstein’s first symptom of ALS was a limp that appeared in the fall of 2022. It took six months for doctors to diagnose him with the neuromuscular disorder, also known as Lou Gehrig’s Disease. ALS afflicts about 34,000 Americans, destroying the nerve cells in the brain and spinal cord that control muscles, including those for breathing. It eventually results in complete paralysis, while most people remain mentally alert. Patients usually end up on ventilators if they do not die first, and respiratory failure is the most common cause of death.

Now 69 and on a ventilator, David cannot move anything except his eyes and mouth, said his ex-wife, Janis Goldstein, who has power of attorney. He requires someone around all the time in his Houston apartment to feed and bathe him, give him medication, and remove mucus blocking his airway. The settings on the ventilator require frequent monitoring and adjustments.

In spring of 2023, David got on the waiting list for Texas’ Medicaid home health program for disabled adults. More than a year later, Texas authorized 12 hours of home care a day. Still, Janis said, the state’s designated administrator sometimes has trouble getting workers for those shifts, and she and her ex-husband must pay for nurses to cover the rest of the day or night.

She said they have spent around a half-million dollars, largely on nurses and aides. They raised much of it through online campaigns and a fundraiser headlined by the country singer Larry Gatlin.

“The point that we’re at now, with the 24-hour help, is we’re pretty much out of money,” Janis said.

She is planning to move David into one of the few nursing homes in the region that take patients on ventilators, she said, but is concerned it will be difficult to arrange for someone to stay with David overnight in his room. She fears that if David’s position shifts even half an inch, he won’t be able to call for help through the machine that tracks his eye movements.

“I don’t know that he’ll be able to handle the stress and the anxiety of knowing that he could suffocate, even in a facility, because he doesn’t have someone by his side,” she said.

Ventilator Deserts

When Michael DiPlacido’s son Adam spent weeks searching for a facility in Missouri that could take care of a patient on a ventilator with a trach tube, the only one that was even a possibility told him it couldn’t accept new patients, because its lone respiratory therapist had quit.

“It’s incredible to me there is not one single place in Missouri that can take a patient like my father,” Adam said.

Looking outside the state, Michael decided to move to a nursing home north of Chicago, about five hours by car from St. Louis. After three months, he left the facility because it was so far away from his family, Adam said.

Adam helped his father move into a long-term care hospital in suburban St. Louis for six weeks. But Michael’s insurer would not pay for hospital-level acute care, so Adam said Michael had to pay more than $47,000 out-of-pocket. Next, Adam helped him move to another Illinois nursing home, about an hour away, that his son had originally rejected because of online reviews, including a Medicare warning that abuse had occurred. Finding it deficient, Michael left after a week.

Adam found a private nursing home company that would care for Michael in his home, at a cost of $960 a day. “After 323 days, my father has finally made it back home,” Adam said in an email in September.

But with his health rapidly deteriorating, Michael was admitted to a hospice facility in October. He died later that month at 75.

Gantt, the respiratory care consultant, said that fewer than half of state Medicaid programs provide adequate reimbursement rates for ventilator patients. He said most state Medicaid payment formulas do not measure outcomes or reward nursing homes financially if they provide better care, such as weaning a patient off the ventilator or preventing infections. He said he has seen nursing homes accept patients with trach tubes even when nurses lack proper training, or when the facility doesn’t employ respiratory therapists.

“For the large part, these patients are stuck in bed,” Gantt said. “We should try to get them the best quality of life.”

David Gifford, the chief medical officer for the American Health Care Association, a nursing home trade group, said equipping a nursing home with ventilators and getting state approval is expensive, and outside of urban areas, many markets lack enough local patients who need ventilators to make it financially worthwhile.

“It’s not as simple as saying we’re going to pay more and have more respiratory therapists,” Gifford said. “This is a group that needs highly specialized care. You’re not going to have it everywhere.”

Flagging Breaths

Derek McManus’ weakening right hand and occasional twitching was the first sign something was wrong. In October 2023, doctors diagnosed Derek, a corporate executive who lives in Painted Post, New York, with ALS.

By August 2024, Derek’s lungs were operating at 78% of capacity, his medical records show. Because ALS progresses so quickly, doctors often prescribe advanced . These machines deliver high-pressure air through a mask (called non-invasive) or a tube down the airway or via a tracheostomy (called invasive). They can calibrate themselves based on a patient’s breathing and have alarms that detect leaks, airway blockages, and device malfunctions. They can run on portable power sources and backup batteries in case of a power failure. The machines can allow people to talk or eat.

But some insurers have what physicians call “fail first” policies that won’t pay for ventilators unless the patient has already tried a respiratory assist device without success (as defined by the company). These simpler machines, the kind sleep apnea patients use, are not as effective in removing carbon dioxide as ventilators and lack safety features. Commonly known by the acronyms or , they can cost $1,000 or more and need to be plugged into an electrical socket.

“It seems to be an expectation of insurance companies they should live the rest of their life attached to a wall outlet,” said Rehbein, the University of Rochester neurologist.

In November 2024, Derek’s insurer denied his physician’s request for a ventilator, writing that “you have not failed treatment” with the simpler device, according to the insurer’s letter, provided by his wife, Lesley McManus. By April, Derek’s breathing capacity had dropped to 60% of normal. Lesley said she worried he would suffocate overnight if his basic device stopped working, since it had no safety alert. “He couldn’t take the mask off, because he can’t move his hands,” she said.

The insurer denied a second request for a ventilator, reiterating that Derek had not shown the simpler machine hadn’t worked, according to another insurance letter. Derek, who is 56, appealed to an independent medical reviewer, who overturned the insurer’s decision and ordered it to provide a ventilator, according to a copy of the ruling. The doctor wrote that the machine’s alarm system and capacity to automatically clear away airway secretion by simulating a cough were “vital for patient safety” and would help protect Derek from developing pneumonia.

“This multi-faceted approach to respiratory care is essential for improving gas exchange, reducing the work of breathing, and ultimately enhancing the patient’s quality of life and extending survival,” the decision said.

Derek said that since he got the new machine, he’s breathing easier, literally and emotionally. “If I’m not breathing right, it will give it an alert, and it will let us know if I don’t have the mask on properly,” he said.

The McManus family requested Â鶹ŮÓÅ Health News not publish their insurer’s name, out of fear of repercussions.

Insurance Rules

John Hansen-Flaschen, a pulmonologist who founded Penn Medicine’s , said some patients give up when an insurer denies their requests and don’t file appeals. “These are some of the most vulnerable people there are, and they don’t have energy to do this,” he said.

Doctors who treat patients with neuromuscular disorders said the most resistance to providing ventilators comes from some private Medicare Advantage plans, but they said it also has been an issue with some commercial policies.

Insurers dispute that they refuse ventilators for patients who need them. The of Excellus BlueCross BlueShield, which Rehbein said was one of the companies that covers his patients, requires simpler breathing machines to have failed before patients can get the more sophisticated ventilator. After a Â鶹ŮÓÅ Health News inquiry, Excellus clarified its policy with a footnote saying it does consider mechanical ventilators as first-line therapy for certain situations, such as ALS, on a case-by-case basis.

UnitedHealthcare confirmed that some of its policies require that a less complex device be tried initially and found ineffective before a ventilator can be authorized. doesn’t mandate a stepped process and says it considers mechanical ventilators based on the severity of the condition and “where interruption or failure of respiratory support would lead to death,” with other patients eligible only for the simpler devices. Humana and Cigna did not respond to requests to provide their policies.

Chris Bond, a spokesperson for AHIP, the health insurance industry’s trade organization, said, “Health plans work to connect patients with safe, clinically appropriate care and welcome opportunities to work with policymakers and stakeholders across the health care system to continually improve access and precisely address any coverage-related issues.”

Melanie Lendnal, senior vice president for policy and advocacy at the ALS Association, said, “I haven’t met one person yet living with ALS, or a family member, who has not had to fight — really fight — to get a non-invasive ventilator.”

A Model in Massachusetts

In 2019, David Marion, a 36-year-old plumber, was hanging out with friends in Lowell, Massachusetts, when he tripped on the sidewalk and fractured his neck. The injury rendered him quadriplegic and paralyzed his abdominal and diaphragm muscles, requiring him to use a ventilator. Surgeons performed a tracheotomy, and over the next year and a half, Marion lived in two long-term acute care hospitals. “I didn’t get out of bed” at the second hospital, Marion, now 43, said in an interview.

His mother, Denise Valliere, who lives in New Hampshire, said she grew desperate trying to find a permanent home for him that was close enough that she could visit. “Some of those nursing homes are pretty sad places,” she said.

At the end of 2020, Marion’s luck turned. He was accepted by the Leonard Florence Center for Living in Chelsea, Massachusetts, which has created an alternative to the institutional life most nursing homes can offer people on ventilators. The center follows the philosophy, with small residences each serving 10 people, with private bedrooms, a common living room, and outdoor space. Residents set their own schedules, including when and what to eat. The center has 10 residences in its building; six are dedicated to people dependent on ventilators, including those with ALS or MS.

The center’s respiratory therapists helped Marion get to the point where he didn’t need a feeding tube and didn’t require his ventilator for portions of the day. The center provided a portable ventilator attached to his wheelchair and a computer tablet that Marion operates with his mouth. It allows him to summon the elevator, open doors, go outside, and adjust his bed, window shades, temperature, and television settings. Other residents who can’t use their hands or mouths can operate the devices through a camera that captures eye movement.

“This gives back independence to people who never thought they’d have independence again,” said Barry Berman, the chief executive officer of Chelsea Jewish Lifecare, the nonprofit that owns the Leonard Florence Center. “There are alternatives. It doesn’t have to be the way that it is.”

Most of the residents’ stays are paid for by Medicaid, which together with Medicare provides the bulk of the center’s revenue. Its finances are bolstered by the nonprofit’s endowment, something most nursing homes lack. Berman said that since the center opened in 2010, he has hosted dozens of visitors interested in replicating its model elsewhere in the country, but no one has.

Some states have licensed facilities that aren’t nursing homes to care for people on ventilators. In California, some people on ventilators live in “congregate living health facilities,” which are residential houses that for the terminally ill, people who are catastrophically or severely disabled, or people who are mentally alert but physically disabled.

Patients often must pay privately because Medicaid managed care programs don’t include these facilities as a benefit, said Mariam Voskanyan, who is president of the state association representing congregate living facilities and owns one in Los Angeles. California’s Medi-Cal program is authorized to pay these kinds of facilities through its waiver, but the program is at capacity and there is of more than 5,000 people.

Researchers expect to reduce or eliminate programs like these to make up for nearly $900 billion in coming Medicaid reductions, since the federal government does not require states to cover or .

Valliere, Marion’s mother, said she was baffled that there were not more places like Leonard Florence. “How can we be so behind in that kind of care and those kinds of facilities if we’re the best country in the world,” she asked. “Why is this?”

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She has developed a strategy for addressing high insurance premiums — one that’s based on giving patients reliable information about how much they, and their insurer, would have to pay for care. The system is already working in Massachusetts. Could it be a model for the rest of the country?

Ho explains to Dan Weissmann, host of “An Arm and a Leg,” why she thinks this approach could help curb high prices and how listeners can help prove it by sharing their medical bills.

Credits

“An Arm and a Leg” is a co-production of Â鶹ŮÓÅ Health News and Public Road Productions.

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, . You can also follow the show on  and the . And if you’ve got stories to tell about the health care system, the producers would love to .

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And subscribe to “An Arm and a Leg” on , , , or wherever you listen to podcasts.

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Last winter, Amber Wingler started getting a series of increasingly urgent messages from the local hospital in Columbia, Missouri, letting her know her family’s health care might soon be upended.

MU Health Care, where most of her family’s doctors work, was mired in a contract dispute with Wingler’s health insurer, Anthem. The existing contract was set to expire.

Then, on March 31, Wingler received an email alerting her that the next day Anthem was dropping the hospital from its network. It left her reeling.

“I know that they go through contract negotiations all the time … but it just seemed like bureaucracy that wasn’t going to affect us. I’d never been pushed out-of-network like that before,” she said.  

The timing was awful.

The query: When a Missouri mom’s health insurance company couldn’t come to an agreement with her hospital, most of her doctors were suddenly out-of-network. She wondered how she would get her kids’ care covered or find new doctors. “For a family of five, … where do we even start?”

— Amber Wingler, 42, in Columbia, Missouri

Wingler’s 8-year-old daughter, Cora, had been having unexplained troubles with her gut. Waitlists to see various pediatric specialists to get a diagnosis, from gastroenterology to occupational therapy, were long — ranging from weeks to more than a year.

(In a statement, MU Health Care spokesperson Eric Maze said the health system works to make sure children with the most urgent needs are seen as quickly as possible.)

Suddenly, the specialist visits for Cora were out-of-network. At a few hundred bucks a piece, the out-of-pocket cost would have added up fast. The only other in-network pediatric specialists Wingler found were in St. Louis and Kansas City, both more than 120 miles away.

So Wingler delayed her daughter’s appointments for months while she tried to figure out what to do.

Nationwide, contract disputes are common, with more than 650 hospitals having public spats with an insurer since 2021. They could become even more common as hospitals brace for about $1 trillion in cuts to federal health care spending prescribed by President Donald Trump’s signature legislation signed into law in July.

Patients caught in a contract dispute have few good options. “There’s that old African proverb: that when two elephants fight, the grass gets trampled. And unfortunately, in these situations, oftentimes patients are grass,” said Caitlin Donovan, a senior director at the Patient Advocate Foundation, a nonprofit that helps people who are having trouble accessing health care.

If you’re feeling trampled by a contract dispute between a hospital and your insurer, here is what you need to know to protect yourself financially:

1. “Out-of-network” means you’ll likely pay more.

Insurance companies negotiate contracts with hospitals and other medical providers to set the rates they will pay for various services. When they reach an agreement, the hospital and most of the providers who work there become part of the insurance company’s network.

Most patients prefer to see providers who are “in-network” because their insurance picks up some, most, or even all of the bill, which could be hundreds or thousands of dollars. If you see an out-of-network provider, you could be on the hook for the whole tab.

If you decide to stick with your familiar doctors even though they’re out-of-network, consider asking about getting a cash discount and about the hospital’s financial assistance program.

2. Rifts between hospitals and insurers often get repaired.

When Brown University health policy researcher examined 3,714 nonfederal hospitals across the U.S., he said, he found that about 18% of them had a public dispute with an insurance company sometime from June 2021 to May 2025.

About half of those hospitals ultimately dropped out of the insurance company’s network, according to Buxbaum’s preliminary data. But most of those breakups ultimately get resolved within a month or two, he added. So your doctors very well could end up back in the network, even after a split.

3. You might qualify for an exception to keep costs lower.

Certain patients with might qualify for an extension of in-network coverage, called continuity of care. You can apply for that extension by contacting your insurer, but the process may prove lengthy. Some hospitals have set up resources to help patients apply for that extension.

Wingler ran that gantlet for her daughter, spending hours on the phone, filling out forms, and sending faxes. But she said she didn’t have the time or energy to do that for everyone in her family.

“My son was going through physical therapy,” she said. “But I’m sorry, dude, like, just do your exercises that you already have. I’m not fighting to get you coverage too, when I’m already fighting for your sister.”

Also worth noting, if you’re dealing with a medical emergency: For most emergency services, hospitals than their in-network rates.

4. Switching your insurance carrier may need to wait.

You might be thinking of switching to an insurer that covers your preferred doctors. But be aware: Many people who choose their insurance plans during an annual open enrollment period are locked into their plan for a year. Insurance contracts with hospitals are not necessarily on the same timeline as your “plan year.”

, such as getting married, having a baby, or losing a job, can qualify you to change insurance outside of your annual open enrollment period, but your doctors’ dropping out of an insurance network is not a qualifying life event.

5. Doctor-shopping can be time-consuming.

If the split between your insurance company and hospital looks permanent, you might consider finding a new slate of doctors and other providers who are in-network with your plan. Where to start? Your insurance plan likely has an online tool to search for in-network providers near you. 

But know that making a switch could mean waiting to establish yourself as a patient with a new doctor and, in some cases, traveling a fair distance.

6. It’s worth holding on to your receipts.

Even if your insurance and hospital don’t strike a deal before their contract expires, there’s a decent chance they will still make a new agreement.

Some patients decide to put off appointments while they wait. Others keep their appointments and pay out-of-pocket. Hold on to your receipts if you do. When insurers and hospitals make up, the deals often are backdated, so the appointments you paid for out-of-pocket could be covered after all.

End of an Ordeal

Three months after the contract between Wingler’s insurance company and the hospital lapsed, the sides announced they had reached a new agreement. Wingler joined the throng of patients scheduling appointments they’d delayed during the ordeal.

In a statement, Jim Turner, a spokesperson for Anthem’s parent company, Elevance Health, wrote, “We approach negotiations with a focus on fairness, transparency, and respect for everyone impacted.”

Maze from MU Health Care said: “We understand how important timely access to pediatric specialty care is for families, and we’re truly sorry for the frustration some parents have experienced scheduling appointments following the resolution of our Anthem contract negotiations.”

Wingler was happy her family could see their providers again, but her relief was tempered by a resolve not to be caught in the same position again.

“I think we will be a little more studious when open enrollment comes around,” Wingler said. “We’d never really bothered to look at our out-of-pocket coverage before because we didn’t need it.”

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of NPR and Â鶹ŮÓÅ Health News.

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Her request for coverage had been denied, the letter said, because she’d had a body mass index of less than 35 when she started Zepbound. The 25-year-old who lives in New York had been taking Zepbound without incident for months, so she was confused: Why was her BMI, which had been around 32 when she started, becoming an issue only now?

Wensley had no interest in quitting an effective drug. “Going right off like that, it’s easier said than done,” she said.

Her doctor fought to keep her on the GLP-1 agonist, the category that includes weight loss and Type 2 diabetes drugs Ozempic, Wegovy, Mounjaro, and Zepbound. But Wensley ultimately had to switch from Zepbound to Wegovy to meet her plan’s requirements. She said she doesn’t like Wegovy as much as her old medication, but she now feels lucky to be on any GLP-1.

Lots of research suggests such medications must be used indefinitely to maintain weight loss and related health benefits. But with list prices of , public and private payers are struggling to keep up with for GLP-1 weight loss drugs and in some cases are eliminating or restricting their coverage as a result.

North Carolina Medicaid plans to for weight loss on Oct. 1, just over a year after . Pennsylvania is planning to limit Medicaid coverage to beneficiaries at the highest risk of complications from obesity. And despite of a potential federal pilot program to extend coverage of GLP-1 obesity drugs under Medicaid and Medicare, all state Medicaid programs are likely to be under pressure due to in the budget reconciliation package recently signed into law by President Donald Trump.

Already, many GLP-1 users , — often due to side effects, high costs, or insurance issues. Now a growing number of researchers, payers, and providers are exploring deliberate “deprescription,” which aims to taper some patients off their medication after they have taken it for a certain amount of time or lost a certain amount of weight.

The U.K.’s National Institute for Health and Care Excellence, which creates guidance for the , on the use of some weight loss medications, such as Wegovy. And the concept was raised in a recent Institute for Clinical and Economic Review to obesity drugs.

, who directs the Center for Value-Based Insurance Design at the University of Michigan, that if some people using GLP-1s to lose weight were eventually transitioned off, more people could take advantage of them.

“If you’re going to spend $1 billion or $100 billion, you could either spend it on fewer people for a long period of time, or you can spend it on a lot more people for a shorter period of time,” he said.

Fendrick’s employer, the University of Michigan, indeed does that. Its prescription drug plan caps coverage of GLP-1 drugs if they’re used solely for weight loss.

Jamie Bennett, a spokesperson for Wegovy and Ozempic maker Novo Nordisk, declined to comment on the concept of deprescription, noting that its drugs are intended for chronic conditions. Rachel Sorvig, a spokesperson for Zepbound and Mounjaro manufacturer Eli Lilly, said in a statement that users should “talk to their health care provider about dosage and duration needs.”

Studies have shown that people typically regain within a year of , and that many people who quit ultimately go back on the drugs.

“There’s no standard of care or gold standard on how to wean right now,” said , an obesity and internal medicine doctor with UK HealthCare in Kentucky.

But the math shows why time-limited coverage is appealing to payers that struggle to pay for beneficiaries’ GLP-1 prescriptions, said , chief medical officer for the pharmacy benefit manager CVS Caremark.

And states are “between a rock and a hard place,” said Kody Kinsley, who until January led North Carolina’s Health and Human Services Department. “They’re going to have to look at every single thing and trim dollars everywhere they can.”

Pennsylvania was looking for cost-saving strategies even before the new federal tax-and-spending law, according to Brandon Cwalina, press secretary for the state’s Department of Human Services. Pennsylvania projects it will spend $1.3 billion on GLP-1 drugs this year.

Plans could see real savings, Fendrick said, if they covered GLP-1s for initial weight loss then moved people to cheaper options — such as more affordable drugs or behavioral health programs — to maintain it.

Plenty of companies are eager to sell insurers, employers, and individuals on behavioral alternatives. One is , its nutrition-focused weight management program as “a proven approach for deprescribing GLP-1s when clinically appropriate.” assessed 154 people with Type 2 diabetes who stopped using GLP-1 medications but continued following Virta’s program, concluding that their weight did not significantly increase after a year.

Researchers affiliated with a European weight management company also that slowly tapering off the medications may help maintain weight loss.

For employers and insurers, the “initial question” was whether to cover GLP-1s for obesity, said Virta CEO Sami Inkinen. “Now, basically, everyone’s coming to the middle and asking, ‘How do we responsibly cover these drugs?’”

Part of responsible coverage, Inkinen said, is providing other forms of support to patients who stop using GLP-1 medications, by choice or otherwise.

For some people, however, maintaining weight loss without a GLP-1 remains a challenge, even with other options available.

Lily, who lives in Michigan, lost almost 80 pounds in roughly 18 months on Wegovy. But she had to quit the drug when she turned 26 and left her parents’ insurance plan this year. The plan her employer offers stopped covering GLP-1s for weight loss right around the time she joined.

Lily, who asked to be identified by only her first name because she is not out to her family as transgender, has tried other medications since then, and previously tried lifestyle programs to control her weight. But she said nothing works as well for her as Wegovy.

She has regained 20 pounds since going off the drug at the beginning of the year and worries that number will continue to rise, potentially contributing to future health problems.

“Just give people the drugs,” she said. “It seems cheaper and safer in the long run.”

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Many of her calls never got past the hold music. When they did, the hospital told her to call her insurer. The insurer told her to have the hospital fax a form to a special number. The hospital responded that they’d been instructed to send faxes to a different number.

“It was just a big loophole we were caught in, going around and around,” Frank said.

Frank and her husband, Allen, faced that ellipse of frustration because they were among 90,000 central Missouri patients caught in the middle of a contract dispute between University of Missouri, or MU, Health Care, a Columbia, Missouri-based health system, and Anthem, the couple’s health insurance provider. The companies let their contract expire in April after failing to strike a deal to keep the hospital system and its clinics in-network.

A growing number of Americans find themselves in a similar pinch. In New York City, negotiations between UnitedHealthcare and Memorial Sloan Kettering Cancer Center , briefly leaving some patients in limbo until a deal was reached the next day. In North Carolina, Duke Health recently announced unless the insurance company agreed to pay more favorable rates to the health system. And the Franks were nearly caught out-of-network previously, when between Anthem and a primary care group in Jefferson City, Missouri, prompted the couple to switch some providers to MU Health Care.

Indeed, 18% of non-federal hospitals experienced at least one documented case of public brinksmanship with an insurance company from June 2021 to May 2025, according to preliminary findings by Jason Buxbaum, a health policy researcher at the Brown University School of Health. Over the same period, 8% of hospitals ultimately went out-of-network with an insurer, at least for a time.

Industry observers say long-standing trends like hospital consolidation and rising health care costs contribute to the disputes, and Trump administration policies could make them more frequent as hospitals brace for about $1 trillion in cuts to federal health care spending as part of President Donald Trump’s sweeping budget law.

“They’re going to be more hard-nosed at negotiating with the health plans because they’re going to be in a survival mode,” said , a retired insurance executive and former board member of America’s Health Insurance Plans, the national trade group representing the health insurance industry.

During the three-month stalemate between the insurer and the health system in Missouri, patients with Anthem plans lost in-network coverage with the region’s largest — and, for some specialties, only — medical provider.

Most people were unable to switch insurance midyear and faced the choice of paying higher prices upfront, delaying care, finding new providers, or running a paperwork gauntlet in hopes their medical conditions qualified for a 90-day coverage extension.

The dispute came at a particularly inconvenient time for the Franks. Allen Frank was recovering from complications from falling off the roof while cleaning the siding of the couple’s home in Rich Fountain in October. When it happened, Amy drove him 24 miles to the nearest emergency room. The facility in Jefferson City had recently been taken over by MU Health Care, and Allen was soon transferred 30 miles farther by ground ambulance to the system’s main hospital in Columbia for surgery to insert two metal plates and several screws to repair his collarbone.

Health care consolidation has been booming nationwide for 30 years, with announced since 1998, including 428 from 2018 to 2023. Mergers may lead to some efficiencies and benefits for consumers, but they also reduce market competition and strengthen the hand of hospitals in negotiations with insurers.

“Insurer markets have been consolidated for a long time,” Brown’s Buxbaum said. “What’s changed is how consolidated the hospital markets have become.”

Now if a hospital system drops out of a network, he said, “it’s not just going to be one key hospital. It’s much more likely to be all the key facilities, or many of the critical mass of providers” in an area.

It’s a scary prospect for patients, making the public threat of a rupture a potent tool in negotiations between hospitals and insurers. That typically works in a hospital’s favor, Baackes said, “because the general assumption is the insurance is being greedy and the hospital is doing God’s work.”

In a statement, Buddy Castellano, spokesperson for Anthem’s parent company, Elevance Health, wrote, “We approach negotiations with a focus on fairness, transparency, and respect for everyone impacted. Health plan rate discussions are complex and require thoughtful collaboration to ensure long-term sustainability. Our commitment remains clear: ensuring access to care while keeping coverage affordable for the families, employers, and communities we serve.”

Allen Frank needed follow-up care in the months after his initial surgery, including a second surgery in July.

A federal law dubbed the No Surprises Act, which took effect in 2022, whose provider drops out of network due to a contract dispute. People getting treatment for serious conditions can keep their in-network rates for up to 90 days with their current providers, delaying the need to find a new one or face higher rates. So Amy Frank worked the phones to get that continuity of care for her husband.

“Our deductible was already met. If we go out-of-network, we’re going to have to start completely over for the out-of-network deductible,” she said.

Eventually, Anthem agreed to let Allen Frank continue his care with MU Health Care. But when he showed up for an appointment to get an injection in his injured shoulder, he was told the health system didn’t have a record of the approval. He refused to leave without being seen, and, eventually, a nurse was able to get through to Anthem to get a confirmation number and approval for the appointment.

“It’s just very frustrating,” Amy Frank said in early July, before the sides had reached a deal. “I’ve got my own medical issues, and I don’t feel like mine are bad enough to be fighting for a continuity of care.”

In an email, MU Health Care spokesperson Eric Maze wrote: “While our goal was to reach agreement prior to our contract terminating and to avoid disruption in care, we established processes and resources well in advance to facilitate continuity of care and reduce the burden for our patients. We understand and are sorry for the stress and concern being out of network created for many, and we are deeply grateful for the patience and trust placed in us during this time.”

Rising health care costs are fueling contract disputes. Hospital expenses grew 5.1% in 2024, according to a recent , outpacing the 2.9% inflation rate. Labor costs are the biggest driver, with advertised nursing salaries rising 26.6% faster than inflation from 2020 to 2024, the brief noted.

Hospitals want to recoup those costs by pressing insurance companies to pay more for services.

Washington University in St. Louis health economist Tim McBride said that dynamic could be further enflamed by the massive tax-and-spending law. The measure makes significant cuts to federal health care spending over the next decade, including a $911 billion drop in Medicaid spending, and is expected to cause 10 million Americans to lose their insurance.

As negotiations between MU Health Care and Anthem broke down, the insurer claimed the hospital was seeking a 39% rate increase over three years, while the hospital said the insurer wouldn’t budge past 1%-2%.

On June 30, three months into the standoff, the Missouri Senate Insurance and Banking Committee called the two sides in for a hearing that broke months of deadlock and prompted new proposals from Anthem.

“Anthem doubled their rate increase offer,” Missouri Senate President Cindy O’Laughlin, a Republican whose district includes parts of central Missouri, on July 8, encouraging a deal.

“Yes I know that I’m not on the inside nor the CEO of either but from what I’ve been told this seems a reasonable offer.”

The sides one week later that was retroactive to April 1, the day the previous contract expired.

Amy Frank got several texts from friends and family about the agreement. She’d been so vocal about her frustrations, they wanted to make sure she’d seen the news. But her relief was subdued.

“So you put everybody through all of this for nothing?” she said the day after the deal was announced.

She had already sunk hours on the phone to ensure Allen’s July 31 surgery to repair the plates holding his clavicle together would be covered. She was in no rush to call her doctors to reschedule the appointments she’d skipped, figuring their phone lines would be busy. The experience had her wondering if the two sides were trying to get people upset as a bargaining tactic.

“That money that they’re fighting over — is that really worth all of the stress?” she said.

And after going through two disputes in three years, she can’t help but wonder: How long until the next one?

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Insurers want higher premiums to cover the usual culprits — rising medical and labor costs and usage — but are tacking on extra percentage point increases in their 2026 rate proposals to cover effects of policy changes advanced by the Trump administration and the Republican-controlled Congress. One key factor built into their filings with state insurance departments: uncertainty over whether Congress allows more generous, covid-era ACA tax subsidies to expire at the end of December.

“The out-of-pocket change for individuals will be immense, and many won’t actually be able to make ends meet and pay premiums, so they will go uninsured,” said JoAnn Volk, co-director of the Center on Health Insurance Reforms at Georgetown University.

Especially if the higher subsidies expire, insurance premiums will be among the first financial pains felt by health care consumers after policy priorities put forward by President Donald Trump and the GOP. Many other changes — such as additional paperwork requirements and spending cuts to Medicaid — won’t occur for at least another year. But spiking ACA premiums, as the nation heads into key midterm elections, invites political pushback. Some on Capitol Hill are exploring ways to temper the subsidy reductions.

“I am hearing on both sides — more from Republicans, but from both the House and Senate” — that they are looking for levers they can pull, said Pennsylvania-based insurance broker Joshua Brooker, who follows legislative actions as part of his job and sits on several insurance advisory groups.

In initial filings, insurers nationally are seeking a median rate increase — meaning half of the proposed increases are lower and half higher — of 15%, for the Peterson-Â鶹ŮÓÅ Health System Tracker covering 19 states and the District of Columbia. Â鶹ŮÓÅ is a national health information nonprofit that includes Â鶹ŮÓÅ Health News.

That’s up sharply from the last few years. For the 2025 plan year, for example, Â鶹ŮÓÅ found that the median proposed increase was 7%.

Health insurers “are doing everything in their power to shield consumers from the rising costs of care and the uncertainty in the market driven by recent policy changes,” wrote Chris Bond, a spokesperson for AHIP, the industry’s lobbying group. The emailed response also called on lawmakers “to take action to extend the health care tax credits to prevent skyrocketing cost increases for millions of Americans in 2026.”

Neither the White House nor the Department of Health and Human Services responded to requests for comment.

These are initial numbers and insurance commissioners in some states may alter requests before approval.

Still, “it’s the biggest increase we’ve seen in over five years,” said analysis co-author Cynthia Cox, a Â鶹ŮÓÅ vice president and director of its Program on the ACA.

Premiums will vary based on where consumers live, the type of plan they choose, and their insurer.

For example, Maryland insurers have requested increases ranging from 8.1% to 18.7% for the upcoming plan year, by Georgetown University researchers. A much larger swing is seen in New York, where one carrier is asking for less than a 1% increase, while another wants 66%. Maryland rate filings indicated the average statewide increase would shrink to 7.9% from 17.1% — if the ACA’s enhanced tax credits are extended.

Most insurers are asking for 10% to 20% increases, the Â鶹ŮÓÅ report says, with several factors driving those increases. For instance, insurers say underlying medical costs — including the use of expensive obesity drugs — will add about 8% to premiums for next year. And most insurers are also adding 4% above what they would have charged had the enhanced tax credits been renewed.

But rising premiums are just part of the picture.

A bigger potential change for consumers’ pocketbooks hinges on whether Congress decides to extend more generous tax credits first put in place during President Joe Biden’s term as part of the American Rescue Plan Act in 2021, then extended through the Inflation Reduction Act in 2022.

Those laws raised the subsidy amounts people could receive based on their household income and local premium costs and removed a cap that had barred higher earners from even partial subsidy assistance. Higher earners could still qualify for some subsidy but first had to toward the premiums.

Across the board, but especially among lower-income policyholders, bigger subsidies in ACA plans.

But they’re also costly.

A permanent extension over the next decade, according to the Congressional Budget Office.

Such an extension was left out of the policy law Trump signed on July 4 that he called the “One Big Beautiful Bill.” Without action, the extra subsidies will expire at the end of this year, after which the tax credits will revert to less generous pre-pandemic levels.

That means two things: Most enrollees will be on the hook to pay a larger share of their premiums as assistance from federal tax credits declines. Secondly, people whose household income exceeds — $84,600 for a couple or $128,600 for a family of four this year — won’t get any subsidies at all.

If the subsidies expire, policy experts estimate, the average amount people pay for coverage . In some states, ACA premiums could double.

“There will be sticker shock,” said Josh Schultz, strategic engagement manager at Softheon, a New York consulting firm that provides enrollment, billing, and other services to about 200 health insurers, many of which are bracing for enrollment losses.

And enrollment could fall sharply. that the combination of expiring tax credits, the Trump law’s new paperwork, and other requirements will result in ACA enrollment dropping by as much as 57%.

According to Â鶹ŮÓÅ, insurers added premium increases of around 4% just to cover the expiration of the enhanced tax credits, which they fear will lead to lower enrollment. That would further raise costs, insurers say, because people who are less healthy are more likely to grit their teeth and reenroll, leaving insurers with a smaller, but sicker, pool of members.

Less common in the filings submitted so far, but noticeable, are increases pegged to Trump administration tariffs, Cox said.

“What they are assuming is tariffs will drive drug costs up significantly, with some saying that can have around a 3-percentage-point increase” in premiums as a result, she said.

Consumers will learn their new premium prices only late in the fall, or when open enrollment for the ACA begins on Nov. 1 and they can start shopping around.

Congress could still act, and discussions are ongoing, said insurance broker Brooker.

Some lawmakers, he said, are consulting with the CBO about the fiscal and coverage effects of various scenarios that don’t extend the subsidies as they currently exist but may offer a middle ground. One possibility involves allowing subsidies for families earning as much as five or six times the poverty level, he said.

But any such effort will draw pushback.

Some conservative think tanks, such as the Paragon Health Institute, to fudge their incomes to qualify and led to other types of fraud, such as brokers signing people up for ACA plans without authorization.

But others note that many consumers — Democratic and Republican — have come to rely on the additional assistance. Not extending it could be risky politically. lived in Republican congressional districts, and 76% were in states won by Trump.

Allowing the enhanced subsidies to expire could also reshape the market.

Brooker said some people may drop coverage. Others will shift to plans with lower premiums but higher deductibles. One provision of Trump’s new tax law allows people enrolled in either “bronze” or “catastrophic”-level ACA plans, which are usually the cheapest, to qualify for health savings accounts, which allow people to set aside money, tax-free, to cover health care costs.

“Naturally, if rates do start going up the way we anticipate, there will be a migration to lower-cost options,” Brooker said.

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Dozens of insurance companies, including Cigna, Aetna, Humana, and UnitedHealthcare, agreed to several measures, which include making fewer medical procedures subject to prior authorization and speeding up the review process. Insurers also pledged to use clear language when communicating with patients and promised that medical professionals would review coverage denials.

While Trump administration officials applauded the insurance industry for its willingness to change, they acknowledged limitations of the agreement.

“The pledge is not a mandate,” Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said during a news conference. “This is an opportunity for the industry to show itself.”

Oz said that insurance preapprovals for some procedures are appropriate, citing knee arthroscopy, a common, minimally invasive procedure to diagnose and treat knee problems that some studies suggest . Chris Klomp, director of the Center for Medicare at CMS, recommended prior authorization be eliminated for vaginal deliveries, colonoscopies, and cataract surgeries, among other procedures. Health insurers said the changes would benefit most Americans, including those with commercial or private coverage, Medicare Advantage, and Medicaid managed care.

The insurers have also agreed that patients who switch insurance plans may continue receiving treatment or other health care services for 90 days without facing immediate prior authorization requirements imposed by their new insurer.

But health policy analysts say prior authorization — a system that forces some people to delay care or abandon treatment — may continue to pose serious health consequences for affected patients. That said, many people may not notice a difference, even if insurers follow through on their new commitments.

“So much of the prior authorization process is behind the black box,” said Kaye Pestaina, director of the Program on Patient and Consumer Protections at Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ Health News.

Often, she said, patients aren’t even aware that they’re subject to prior authorization requirements until they face a denial.

“I’m not sure how this changes that,” Pestaina said.

The follows the killing of UnitedHealthcare CEO Brian Thompson, who was shot in midtown Manhattan in early December on the way to an investor meeting, forcing the issue of prior authorization to the forefront.

Oz acknowledged “violence in the streets” prompted Monday’s announcement. Klomp told Â鶹ŮÓÅ Health News that insurers were reacting to the shooting because the problem has “reached a fever pitch.” Health insurance CEOs now move with security details wherever they go, Klomp said.

“There’s no question that health insurers have a reputation problem,” said Robert Hartwig, an insurance expert and a clinical associate professor at the University of South Carolina.

The pledge shows that insurers are hoping to stave off “more draconian” legislation or regulation in the future, Hartwig said.

But government interventions to improve prior authorization will be used “if we’re forced to use them,” Oz said during the news conference.

“The administration has made it clear we’re not going to tolerate it anymore,” he said. “So either you fix it or we’re going to fix it.”

Here are the key takeaways for consumers:

1. Prior authorization isn’t going anywhere.

Health insurers will still be allowed to deny doctor-recommended care, which is arguably the biggest criticism that patients and providers level against insurance companies. And it isn’t clear how the new commitments will protect the sickest patients, such as those diagnosed with cancer, who need the most expensive treatment.

2. Reform efforts aren’t new.

Most states have already passed at least one law imposing requirements on insurers, often intended to reduce the time patients spend waiting for answers from their insurance company and to require transparency from insurers about which prescriptions and procedures require preapproval. Some states have also enacted “gold card” programs for doctors that allow physicians with a robust record of prior authorization approvals to bypass the requirements.

Nationally, rules proposed by the first Trump administration and finalized by the Biden administration are already set to take effect next year. They will require insurers to respond to requests within seven days or 72 hours, depending on their urgency, and to process prior authorization requests electronically, instead of by phone or fax, among other changes. Those rules apply only to certain categories of insurance, including Medicare Advantage and Medicaid.

Beyond that, some insurance companies committed to improvement long before Monday’s announcement. Earlier this year, UnitedHealthcare pledged to reduce prior authorization volume by 10%. Cigna announced its own set of improvements in February.

3. Insurance companies are already supposed to be doing some of these things.

For example, the Affordable Care Act already requires insurers to communicate with patients in plain language about health plan benefits and coverage.

But denial letters remain confusing because companies tend to use jargon. For instance, AHIP, the health insurance industry trade group, used the term “non-approved requests” in Monday’s announcement.

Insurers also pledged that medical professionals would continue to review prior authorization denials. AHIP claims this is “a standard already in place.” But recent lawsuits allege otherwise, accusing companies of denying claims in a matter of seconds.

4. Health insurers will increasingly rely on artificial intelligence.

Health insurers issue millions of denials every year, though most prior authorization requests are quickly, sometimes even instantly, approved.

The use of AI in making prior authorization decisions isn’t new — and it will probably continue to ramp up, with insurers pledging Monday to issue 80% of prior authorization decisions “in real-time” by 2027.

“Artificial intelligence should help this tremendously,” Rep. Gregory Murphy (R-N.C.), a physician, said during the news conference.

“But remember, artificial intelligence is only as good as what you put into it,” he added.

Results from a survey published by the American Medical Association in February indicated 61% of physicians are concerned that the use of AI by insurance companies is already increasing denials.

5. Key details remain up in the air.

Oz said CMS will post a full list of participating insurers this summer, while other details will become public by January.

He said insurers have agreed to post data about their use of prior authorization on a public dashboard, but it isn’t clear when that platform will be unveiled. The same holds true for “performance targets” that Oz spoke of during the news conference. He did not name specific targets, indicate how they will be made public, or specify how the government would enforce them.

While the AMA, which represents doctors, applauded the announcement, “patients and physicians will need specifics demonstrating that the latest insurer pledge will yield substantive actions,” the association’s president, Bobby Mukkamala, said in a statement. He noted that health insurers made “past promises” to improve prior authorization in 2018.

Meanwhile, it also remains unclear what services insurers will ultimately agree to release from prior authorization requirements.

Patient advocates are in the process of identifying “low-value codes,” Oz said, that should not require preapproval, but it is unknown when those codes will be made public or when insurers will agree to release them from prior authorization rules.

Do you have an experience with prior authorization you’d like to share? to tell your story.

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All went to physical therapy, but their health insurers stopped paying before any could walk without assistance. Paulo spent nearly $1,500 out of her own pocket for more sessions.

Millions of Americans rely on physical and occupational therapists to regain strength and motor skills after operations, diseases, and injuries. But recoveries are routinely stymied by a widespread constraint in health insurance policies: rigid caps on therapy sessions.

Insurers frequently limit such sessions to as few as 20 a year, a Â鶹ŮÓÅ Health News examination finds, even for people with severe damage such as spinal cord injuries and strokes, who may need months of treatment, multiple times a week. Patients can face a bind: Without therapy, they can’t return to work, but without working, they can’t afford the therapy.

Paulo said she pressed her insurer for more sessions, to no avail. “I said, ‘I’m in pain. I need the services. Is there anything I can do?’” she recalled. “They said, no, they can’t override the hard limit for the plan.”

A typical physical therapy session for a privately insured patient to improve daily functioning on average, according to the Health Care Cost Institute. Most run from a half hour to an hour.

Insurers say annual visit limits help keep down costs, and therefore premiums, and are intended to prevent therapists from continuing treatment when patients are no longer improving. They say most injuries can be addressed in a dozen or fewer sessions and that people and employers who bought insurance could have purchased policies with better therapy benefits if it was a priority.

Atul Patel, a physiatrist in Overland Park, Kansas, and the treasurer of the American Academy of Physical Medicine and Rehabilitation, said insurers’ desire to prevent gratuitous therapy is understandable but has “gone too far.”

“Most patients get way less therapy than they would actually benefit from,” he said.

Hard caps on rehab endure in part because of an omission in the Affordable Care Act. While that law and barred them from setting spending restrictions on a patient’s medical care, it did not prohibit establishing a maximum number of therapy sessions a year.

More than 29,000 ACA health plans — nearly 4 in 5 — limit the annual number of physical therapy sessions, according to a Â鶹ŮÓÅ Health News analysis of plans sold last year to individuals and small businesses. Caps generally ranged from 20 to 60 visits; the most common was 20 a year.

Health plans provided by employers often have limits of 20 or 30 sessions as well, said Cori Uccello, senior health fellow at the American Academy of Actuaries.

“It’s the gross reality in America right now,” said Sam Porritt, chairman of the Falling Forward Foundation, a Kansas-based philanthropy that for about 200 patients who exhausted their insurance over the past decade. “No one knows about this except people in the industry. You find out about it when tragedy hits.”

Even in plans with no caps, patients are not guaranteed unlimited treatment. Therapists say insurers repeatedly require prior authorization, demanding a new request every two or three visits. Insurers frequently deny additional sessions if they believe there hasn’t been improvement.

“We’re seeing a lot of arbitrary denials just to see if you’ll appeal,” said Gwen Simons, a lawyer in Scarborough, Maine, who represents therapy practices. “That’s the point where the therapist throws up their hands.”

‘Couldn’t Pick Her Up’

Katie Kriegshauser, a 37-year-old psychologist from Kansas City, Missouri, developed pregnancy complications that shut down her liver, pancreas, and kidneys in November 2023. After giving birth to her daughter, she spent more than three months in a hospital, undergoing multiple surgeries and losing more than 40 pounds so quickly that doctors suspected her nerves became damaged from compression. Her neurologist told her he doubted she would ever walk again.

Kriegshauser’s UnitedHealthcare insurance plan allowed 30 visits at Ability KC, a rehabilitation clinic in Kansas City. She burned through them in six weeks in 2024 because she needed both physical therapy, to regain her mobility, and occupational therapy, for daily tasks such as getting dressed.

“At that point I was starting to use the walker from being completely in the wheelchair,” Kriegshauser recalled. She said she wasn’t strong enough to change her daughter’s diaper. “I couldn’t pick her up out of her crib or put her down to sleep,” she said.

The Falling Forward Foundation paid for additional sessions that enabled her to walk independently and hold her daughter in her arms. “A huge amount of progress happened in that period after my insurance ran out,” she said.

In an unsigned statement, UnitedHealthcare said it covered the services that were included in Kriegshauser’s health plan. The company declined to permit an official to discuss its policies on the record because of security concerns.

A Shattered Teenager

Patients who need therapy near the start of a health plan’s year are more likely to run out of visits. Mari Villar was 15 and had been walking with high school friends to get a bite to eat in May 2023 when a car and smashed into her before the driver sped away.

The accident broke both her legs, lacerated her liver, damaged her colon, severed an artery in her right leg, and collapsed her lung. She has undergone 11 operations, including emergency exploratory surgery to stop internal bleeding, four angioplasties, and the installation of screws and plates to hold her leg bones together.

Villar spent nearly a month in Shirley Ryan AbilityLab’s hospital in Chicago. She was discharged after her mother’s insurer, Blue Cross and Blue Shield of Illinois, denied her physician’s request for five more days, making her more reliant on outpatient therapy, according to records shared by her mother, Megan Bracamontes.

Villar began going to one of Shirley Ryan’s outpatient clinics, but by the end of 2023, she had used up the 30 physical therapy and 30 occupational therapy visits the Blue Cross plan allowed. Because the plan ran from July to June, she had no sessions left for the first half of 2024.

“I couldn’t do much,” Villar said. “I made lots of progress there, but I was still on crutches.”

Dave Van de Walle, a Blue Cross spokesperson, said in an email that the insurer does not comment on individual cases. Razia Hashmi, vice president for clinical affairs at the Blue Cross Blue Shield Association, said in a written statement that patients who have run out of sessions should “explore alternative treatment plans” including home exercises.

Villar received some extra sessions from the Falling Forward Foundation. While her plan year has reset, Villar is postponing most therapy sessions until after her next surgery so she will be less likely to run out again. Bracamontes said her daughter still can’t feel or move her right foot and needs three more operations: one to relieve nerve pain, and two to try to restore mobility in her foot by lengthening her Achilles tendon and transferring a tendon in her left leg into her right.

“Therapy caps are very unfair because everyone’s situation is different,” Villar said. “I really depend on my sessions to get me to a new normalcy. And not having that and going through all these procedures is scary to think about.”

Rationing Therapy

Most people who use all their sessions either stop going or pay out-of-pocket for extra therapy.

Amy Paulo, a 34-year-old Massachusetts woman recovering from two operations on her left leg, maxed out the 40 visits covered by Blue Cross Blue Shield of Massachusetts in 2024, so she spent $1,445 out-of-pocket for 17 therapy sessions.

Paulo needed physical therapy to recover from several surgeries to shorten her left leg to the length of her right leg — the difference a consequence of juvenile arthritis. Her recovery was prolonged, she said, because her femur didn’t heal properly after one of the operations, in which surgeons cut out the middle of her femur and put a rod in its place.

“I went ballistic on Blue Cross many, many times,” said Paulo, who works with developmentally delayed children.”

Amy McHugh, a Blue Cross spokesperson, declined to discuss Paulo’s case. In an email, she said most employers who hire Blue Cross to administer their health benefits choose plans with “our standard” 60-visit limit, which she said is more generous than most insurers offer, but some employers “choose to allow for more or fewer visits per year.”

Paulo said she expects to restrict her therapy sessions to once a week instead of the recommended twice a week because she’ll need more help after an upcoming operation on her leg.

“We had to plan to save my visits for this surgery, as ridiculous as it sounds,” she said.

Medicare Is More Generous

People with commercial insurance plans face more hurdles than those on Medicare, which sets dollar thresholds on therapy each year but allows therapists to continue providing services if they document medical necessity. This year the limits are $2,410 for physical and speech therapy and $2,410 for occupational therapy.

Private Medicare Advantage plans don’t have visit or dollar caps, but they often require prior authorization every few visits. The U.S. Senate Permanent Subcommittee on Investigations found last year that MA plans for physical and occupational therapy at hospitals and nursing homes at higher rates than they reject other medical services.

Therapists say many commercial plans require prior authorization and mete out approvals parsimoniously. Insurers often make therapists submit detailed notes, sometimes for each session, documenting patients’ treatment plans, goals, and test results showing how well they perform each exercise.

“It’s a battle of getting visits,” said Jackee Ndwaru, an occupational therapist in Jacksonville, Florida. “If you can’t show progress they’re not going to approve.”

An Insurer Overruled

Marjorie Haney’s insurance plan covered 20 therapy sessions a year, but Anthem Blue Cross Blue Shield approved only a few visits at a time for the rotator cuff she tore in a bike accident in Maine. After 13 visits in 2021, Anthem refused to approve more, writing that her medical records “do not show you made progress with specific daily tasks,” according to the denial letter.

Haney, a physical therapist herself, said the decision made no sense because at that stage of her recovery, the therapy was focused on preventing her shoulder from freezing up and gradually expanding its range of motion.

“I went through those visits like they were water,” Haney, now 57, said. “My range was getting better, but functionally I couldn’t use my arm to lift things.”

Haney appealed to Maine’s insurance bureau for an independent review. In its report overturning Anthem’s decision, the bureau’s physician consultant, William Barreto, concluded that Haney had made “substantial improvement” — she no longer needed a shoulder sling and was able to return to work with restrictions. Barreto also noted that nothing in Anthem’s policy required progress with specific daily tasks, which was the basis for Anthem’s refusal.

“Given the member’s substantial restriction in active range of motion and inability to begin strengthening exercises, there is remaining deficit that requires the skills and training of a qualified physical therapist,” the report said.

Anthem said it requires repeated assessments before authorizing additional visits “to ensure the member is receiving the right care for the right period of time based on his or her care needs.” In the statement provided by Stephanie DuBois, an Anthem spokesperson, the insurer said this process “also helps prevent members from using up all their covered treatment benefits too quickly, especially if they don’t end up needing the maximum number of therapy visits.”

In 2023, Maine passed for the first 12 rehab visits, making it one of the few states to curb insurer limitations on physical therapy. The law doesn’t protect residents with plans based in other states or plans from a Maine employer who self-insures.

Haney said after she won her appeal, she spaced out the sessions her plan permitted by going once weekly. “I got another month,” she said, “and I stretched it out to six weeks.”

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In , a Health and Human Services inspector general audit found that the insurers pocketed $7.5 billion in 2023 from diagnosing health conditions that prompted no medical services — about $4.2 billion of it through the health assessments done in patients’ homes.

Assistant Inspector General Erin Bliss told me the plans are raking in billions of dollars without providing any treatment for medical conditions the plans flagged during the visits, including serious diseases such as diabetes and major depression.

But the power to curb billing tied to home visits rests with regulators at the Centers for Medicare and Medicaid Services, who appear unmoved by the OIG’s criticism.

In a statement to Â鶹ŮÓÅ Health News by spokesperson Alexx Pons, CMS said it “appreciates the OIG’s review in this area” and will keep studying the issue.

In a formal response published in the audit report, CMS said it disagreed with the watchdog’s call to restrict use of home health assessments in computing how much to pay health plans. People on Medicare “should have access to care that is appropriately provided in the home setting,” CMS wrote.

That’s just fine with the insurance industry. The OIG drew “inaccurate conclusions,” said Heather Soule, a spokesperson for UnitedHealthcare. The insurer is the largest Medicare Advantage contractor and accounted for about two-thirds of the payments tied to home visits and related data mining of patient files cited in the audit.

The home visits are “among the most comprehensive and thorough assessments of a patient’s health and physical environment available in the health-care system, helping to identify and drive needed follow-on care for the vast majority of the patients with whom we engage,” Soule said in the statement.

Medicare Advantage plans serve more than 33 million Americans, more than half of the people eligible for Medicare.

Government spending on the program, which is dominated by a handful of private health insurance companies, is expected to hit  this year. The industry  most Medicare Advantage enrollees are satisfied with the care they receive and typically pay less out-of-pocket than those enrolled in original Medicare.

But critics of the program point to years and years of , whistleblower lawsuits and other investigations revealing that many health plans exaggerate how sick patients are to boost their payments.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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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.”

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On vacation in Mexico last year, Michael DiPlacido passed out twice while scuba diving and again in his hotel. Back in St. Louis, doctors diagnosed him with amyotrophic lateral sclerosis, or ALS, an incurable disease that often requires mechanical ventilation.

When his son Adam DiPlacido tried to find a permanent place to care for his father, who now needed a ventilator to breathe through a tracheostomy tube, he discovered none of Missouri’s nearly 500 nursing homes could take him.

“I never thought it would be easy, but I never thought it would be this hard,” Adam said.

A Â鶹ŮÓÅ Health News investigation found widespread flaws and gaps in care for some of the country’s most debilitated people: those who cannot breathe on their own.

Spinal cord injuries, strokes, chronic obstructive pulmonary disease, and neurological diseases such as multiple sclerosis have left tens of thousands of Americans permanently dependent on ventilators. The barriers these patients face offer a stark example of how the United States’ disjointed health care system makes dealing with severe illness so much harder.

The investigation found patients are frequently stymied in efforts to get their insurers to provide appropriate home ventilators. They can end up spending hundreds of thousands of dollars for private nurses to make sure they don’t die overnight. Those who need to be in a nursing home or other health facility sometimes must move to another state, far from their families.

“There are not a lot of institutions that can manage these people,” said Jonathon Schwartz, acting chief medical officer for the Spaulding Rehabilitation Network in Boston.

Only 347 of the nation’s roughly 14,750 nursing homes have specialized units dedicated to people on ventilators, a Â鶹ŮÓÅ Health News analysis of federal data shows. Fifteen states, including Missouri, have no nursing homes with a specialized unit for ventilator care.

While nursing homes can care for residents on ventilators on their regular floors, in practice few do. From April through June, fewer than 10% of nursing homes had long-stay residents breathing with the assistance of invasive mechanical ventilators, which deliver air through a tube down the airway or via a tracheostomy, the analysis found. Fewer than 15% of nursing homes had short-stay patients on ventilators.

Many patients in nursing homes can be weaned off ventilators, but those who can’t because of their condition often spend years in hospitals, which are not designed for residency. Innovative alternatives to traditional nursing homes exist in some areas of the country, but they haven’t been widely replicated and now are at risk from steep reductions in Medicaid enacted by President Donald Trump and the Republican-controlled Congress.

“It could create a terrible scenario,” said Gene Gantt, a respiratory care consultant to states and insurers.

Many people permanently on ventilators prefer to live at home as long as they can. But care there can be perilous and pricey. Some state health programs pay for ventilator care for low-income patients, but getting enrolled can take months amid bureaucratic hurdles and waitlists.

Some insurers balk at providing advanced home ventilators — which sound alerts for collapsed lungs, airway leaks, or malfunctions and can cost more than $10,000 — until patients have lost much of their ability to breathe.

“Feeling you’re suffocating is a horrific feeling, and that feeling can go on for months and months” as ALS patients decline while sparring with insurers, said Tyler Rehbein, an assistant professor of neurology at the University of Rochester who treats ALS patients.

‘Out of Money’

David Goldstein’s first symptom of ALS was a limp that appeared in the fall of 2022. It took six months for doctors to diagnose him with the neuromuscular disorder, also known as Lou Gehrig’s Disease. ALS afflicts about 34,000 Americans, destroying the nerve cells in the brain and spinal cord that control muscles, including those for breathing. It eventually results in complete paralysis, while most people remain mentally alert. Patients usually end up on ventilators if they do not die first, and respiratory failure is the most common cause of death.

Now 69 and on a ventilator, David cannot move anything except his eyes and mouth, said his ex-wife, Janis Goldstein, who has power of attorney. He requires someone around all the time in his Houston apartment to feed and bathe him, give him medication, and remove mucus blocking his airway. The settings on the ventilator require frequent monitoring and adjustments.

In spring of 2023, David got on the waiting list for Texas’ Medicaid home health program for disabled adults. More than a year later, Texas authorized 12 hours of home care a day. Still, Janis said, the state’s designated administrator sometimes has trouble getting workers for those shifts, and she and her ex-husband must pay for nurses to cover the rest of the day or night.

She said they have spent around a half-million dollars, largely on nurses and aides. They raised much of it through online campaigns and a fundraiser headlined by the country singer Larry Gatlin.

“The point that we’re at now, with the 24-hour help, is we’re pretty much out of money,” Janis said.

She is planning to move David into one of the few nursing homes in the region that take patients on ventilators, she said, but is concerned it will be difficult to arrange for someone to stay with David overnight in his room. She fears that if David’s position shifts even half an inch, he won’t be able to call for help through the machine that tracks his eye movements.

“I don’t know that he’ll be able to handle the stress and the anxiety of knowing that he could suffocate, even in a facility, because he doesn’t have someone by his side,” she said.

Ventilator Deserts

When Michael DiPlacido’s son Adam spent weeks searching for a facility in Missouri that could take care of a patient on a ventilator with a trach tube, the only one that was even a possibility told him it couldn’t accept new patients, because its lone respiratory therapist had quit.

“It’s incredible to me there is not one single place in Missouri that can take a patient like my father,” Adam said.

Looking outside the state, Michael decided to move to a nursing home north of Chicago, about five hours by car from St. Louis. After three months, he left the facility because it was so far away from his family, Adam said.

Adam helped his father move into a long-term care hospital in suburban St. Louis for six weeks. But Michael’s insurer would not pay for hospital-level acute care, so Adam said Michael had to pay more than $47,000 out-of-pocket. Next, Adam helped him move to another Illinois nursing home, about an hour away, that his son had originally rejected because of online reviews, including a Medicare warning that abuse had occurred. Finding it deficient, Michael left after a week.

Adam found a private nursing home company that would care for Michael in his home, at a cost of $960 a day. “After 323 days, my father has finally made it back home,” Adam said in an email in September.

But with his health rapidly deteriorating, Michael was admitted to a hospice facility in October. He died later that month at 75.

Gantt, the respiratory care consultant, said that fewer than half of state Medicaid programs provide adequate reimbursement rates for ventilator patients. He said most state Medicaid payment formulas do not measure outcomes or reward nursing homes financially if they provide better care, such as weaning a patient off the ventilator or preventing infections. He said he has seen nursing homes accept patients with trach tubes even when nurses lack proper training, or when the facility doesn’t employ respiratory therapists.

“For the large part, these patients are stuck in bed,” Gantt said. “We should try to get them the best quality of life.”

David Gifford, the chief medical officer for the American Health Care Association, a nursing home trade group, said equipping a nursing home with ventilators and getting state approval is expensive, and outside of urban areas, many markets lack enough local patients who need ventilators to make it financially worthwhile.

“It’s not as simple as saying we’re going to pay more and have more respiratory therapists,” Gifford said. “This is a group that needs highly specialized care. You’re not going to have it everywhere.”

Flagging Breaths

Derek McManus’ weakening right hand and occasional twitching was the first sign something was wrong. In October 2023, doctors diagnosed Derek, a corporate executive who lives in Painted Post, New York, with ALS.

By August 2024, Derek’s lungs were operating at 78% of capacity, his medical records show. Because ALS progresses so quickly, doctors often prescribe advanced . These machines deliver high-pressure air through a mask (called non-invasive) or a tube down the airway or via a tracheostomy (called invasive). They can calibrate themselves based on a patient’s breathing and have alarms that detect leaks, airway blockages, and device malfunctions. They can run on portable power sources and backup batteries in case of a power failure. The machines can allow people to talk or eat.

But some insurers have what physicians call “fail first” policies that won’t pay for ventilators unless the patient has already tried a respiratory assist device without success (as defined by the company). These simpler machines, the kind sleep apnea patients use, are not as effective in removing carbon dioxide as ventilators and lack safety features. Commonly known by the acronyms or , they can cost $1,000 or more and need to be plugged into an electrical socket.

“It seems to be an expectation of insurance companies they should live the rest of their life attached to a wall outlet,” said Rehbein, the University of Rochester neurologist.

In November 2024, Derek’s insurer denied his physician’s request for a ventilator, writing that “you have not failed treatment” with the simpler device, according to the insurer’s letter, provided by his wife, Lesley McManus. By April, Derek’s breathing capacity had dropped to 60% of normal. Lesley said she worried he would suffocate overnight if his basic device stopped working, since it had no safety alert. “He couldn’t take the mask off, because he can’t move his hands,” she said.

The insurer denied a second request for a ventilator, reiterating that Derek had not shown the simpler machine hadn’t worked, according to another insurance letter. Derek, who is 56, appealed to an independent medical reviewer, who overturned the insurer’s decision and ordered it to provide a ventilator, according to a copy of the ruling. The doctor wrote that the machine’s alarm system and capacity to automatically clear away airway secretion by simulating a cough were “vital for patient safety” and would help protect Derek from developing pneumonia.

“This multi-faceted approach to respiratory care is essential for improving gas exchange, reducing the work of breathing, and ultimately enhancing the patient’s quality of life and extending survival,” the decision said.

Derek said that since he got the new machine, he’s breathing easier, literally and emotionally. “If I’m not breathing right, it will give it an alert, and it will let us know if I don’t have the mask on properly,” he said.

The McManus family requested Â鶹ŮÓÅ Health News not publish their insurer’s name, out of fear of repercussions.

Insurance Rules

John Hansen-Flaschen, a pulmonologist who founded Penn Medicine’s , said some patients give up when an insurer denies their requests and don’t file appeals. “These are some of the most vulnerable people there are, and they don’t have energy to do this,” he said.

Doctors who treat patients with neuromuscular disorders said the most resistance to providing ventilators comes from some private Medicare Advantage plans, but they said it also has been an issue with some commercial policies.

Insurers dispute that they refuse ventilators for patients who need them. The of Excellus BlueCross BlueShield, which Rehbein said was one of the companies that covers his patients, requires simpler breathing machines to have failed before patients can get the more sophisticated ventilator. After a Â鶹ŮÓÅ Health News inquiry, Excellus clarified its policy with a footnote saying it does consider mechanical ventilators as first-line therapy for certain situations, such as ALS, on a case-by-case basis.

UnitedHealthcare confirmed that some of its policies require that a less complex device be tried initially and found ineffective before a ventilator can be authorized. doesn’t mandate a stepped process and says it considers mechanical ventilators based on the severity of the condition and “where interruption or failure of respiratory support would lead to death,” with other patients eligible only for the simpler devices. Humana and Cigna did not respond to requests to provide their policies.

Chris Bond, a spokesperson for AHIP, the health insurance industry’s trade organization, said, “Health plans work to connect patients with safe, clinically appropriate care and welcome opportunities to work with policymakers and stakeholders across the health care system to continually improve access and precisely address any coverage-related issues.”

Melanie Lendnal, senior vice president for policy and advocacy at the ALS Association, said, “I haven’t met one person yet living with ALS, or a family member, who has not had to fight — really fight — to get a non-invasive ventilator.”

A Model in Massachusetts

In 2019, David Marion, a 36-year-old plumber, was hanging out with friends in Lowell, Massachusetts, when he tripped on the sidewalk and fractured his neck. The injury rendered him quadriplegic and paralyzed his abdominal and diaphragm muscles, requiring him to use a ventilator. Surgeons performed a tracheotomy, and over the next year and a half, Marion lived in two long-term acute care hospitals. “I didn’t get out of bed” at the second hospital, Marion, now 43, said in an interview.

His mother, Denise Valliere, who lives in New Hampshire, said she grew desperate trying to find a permanent home for him that was close enough that she could visit. “Some of those nursing homes are pretty sad places,” she said.

At the end of 2020, Marion’s luck turned. He was accepted by the Leonard Florence Center for Living in Chelsea, Massachusetts, which has created an alternative to the institutional life most nursing homes can offer people on ventilators. The center follows the philosophy, with small residences each serving 10 people, with private bedrooms, a common living room, and outdoor space. Residents set their own schedules, including when and what to eat. The center has 10 residences in its building; six are dedicated to people dependent on ventilators, including those with ALS or MS.

The center’s respiratory therapists helped Marion get to the point where he didn’t need a feeding tube and didn’t require his ventilator for portions of the day. The center provided a portable ventilator attached to his wheelchair and a computer tablet that Marion operates with his mouth. It allows him to summon the elevator, open doors, go outside, and adjust his bed, window shades, temperature, and television settings. Other residents who can’t use their hands or mouths can operate the devices through a camera that captures eye movement.

“This gives back independence to people who never thought they’d have independence again,” said Barry Berman, the chief executive officer of Chelsea Jewish Lifecare, the nonprofit that owns the Leonard Florence Center. “There are alternatives. It doesn’t have to be the way that it is.”

Most of the residents’ stays are paid for by Medicaid, which together with Medicare provides the bulk of the center’s revenue. Its finances are bolstered by the nonprofit’s endowment, something most nursing homes lack. Berman said that since the center opened in 2010, he has hosted dozens of visitors interested in replicating its model elsewhere in the country, but no one has.

Some states have licensed facilities that aren’t nursing homes to care for people on ventilators. In California, some people on ventilators live in “congregate living health facilities,” which are residential houses that for the terminally ill, people who are catastrophically or severely disabled, or people who are mentally alert but physically disabled.

Patients often must pay privately because Medicaid managed care programs don’t include these facilities as a benefit, said Mariam Voskanyan, who is president of the state association representing congregate living facilities and owns one in Los Angeles. California’s Medi-Cal program is authorized to pay these kinds of facilities through its waiver, but the program is at capacity and there is of more than 5,000 people.

Researchers expect to reduce or eliminate programs like these to make up for nearly $900 billion in coming Medicaid reductions, since the federal government does not require states to cover or .

Valliere, Marion’s mother, said she was baffled that there were not more places like Leonard Florence. “How can we be so behind in that kind of care and those kinds of facilities if we’re the best country in the world,” she asked. “Why is this?”

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She has developed a strategy for addressing high insurance premiums — one that’s based on giving patients reliable information about how much they, and their insurer, would have to pay for care. The system is already working in Massachusetts. Could it be a model for the rest of the country?

Ho explains to Dan Weissmann, host of “An Arm and a Leg,” why she thinks this approach could help curb high prices and how listeners can help prove it by sharing their medical bills.

Credits

“An Arm and a Leg” is a co-production of Â鶹ŮÓÅ Health News and Public Road Productions.

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, . You can also follow the show on  and the . And if you’ve got stories to tell about the health care system, the producers would love to .

To hear all Â鶹ŮÓÅ Health News podcasts, .

And subscribe to “An Arm and a Leg” on , , , or wherever you listen to podcasts.

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Last winter, Amber Wingler started getting a series of increasingly urgent messages from the local hospital in Columbia, Missouri, letting her know her family’s health care might soon be upended.

MU Health Care, where most of her family’s doctors work, was mired in a contract dispute with Wingler’s health insurer, Anthem. The existing contract was set to expire.

Then, on March 31, Wingler received an email alerting her that the next day Anthem was dropping the hospital from its network. It left her reeling.

“I know that they go through contract negotiations all the time … but it just seemed like bureaucracy that wasn’t going to affect us. I’d never been pushed out-of-network like that before,” she said.  

The timing was awful.

The query: When a Missouri mom’s health insurance company couldn’t come to an agreement with her hospital, most of her doctors were suddenly out-of-network. She wondered how she would get her kids’ care covered or find new doctors. “For a family of five, … where do we even start?”

— Amber Wingler, 42, in Columbia, Missouri

Wingler’s 8-year-old daughter, Cora, had been having unexplained troubles with her gut. Waitlists to see various pediatric specialists to get a diagnosis, from gastroenterology to occupational therapy, were long — ranging from weeks to more than a year.

(In a statement, MU Health Care spokesperson Eric Maze said the health system works to make sure children with the most urgent needs are seen as quickly as possible.)

Suddenly, the specialist visits for Cora were out-of-network. At a few hundred bucks a piece, the out-of-pocket cost would have added up fast. The only other in-network pediatric specialists Wingler found were in St. Louis and Kansas City, both more than 120 miles away.

So Wingler delayed her daughter’s appointments for months while she tried to figure out what to do.

Nationwide, contract disputes are common, with more than 650 hospitals having public spats with an insurer since 2021. They could become even more common as hospitals brace for about $1 trillion in cuts to federal health care spending prescribed by President Donald Trump’s signature legislation signed into law in July.

Patients caught in a contract dispute have few good options. “There’s that old African proverb: that when two elephants fight, the grass gets trampled. And unfortunately, in these situations, oftentimes patients are grass,” said Caitlin Donovan, a senior director at the Patient Advocate Foundation, a nonprofit that helps people who are having trouble accessing health care.

If you’re feeling trampled by a contract dispute between a hospital and your insurer, here is what you need to know to protect yourself financially:

1. “Out-of-network” means you’ll likely pay more.

Insurance companies negotiate contracts with hospitals and other medical providers to set the rates they will pay for various services. When they reach an agreement, the hospital and most of the providers who work there become part of the insurance company’s network.

Most patients prefer to see providers who are “in-network” because their insurance picks up some, most, or even all of the bill, which could be hundreds or thousands of dollars. If you see an out-of-network provider, you could be on the hook for the whole tab.

If you decide to stick with your familiar doctors even though they’re out-of-network, consider asking about getting a cash discount and about the hospital’s financial assistance program.

2. Rifts between hospitals and insurers often get repaired.

When Brown University health policy researcher examined 3,714 nonfederal hospitals across the U.S., he said, he found that about 18% of them had a public dispute with an insurance company sometime from June 2021 to May 2025.

About half of those hospitals ultimately dropped out of the insurance company’s network, according to Buxbaum’s preliminary data. But most of those breakups ultimately get resolved within a month or two, he added. So your doctors very well could end up back in the network, even after a split.

3. You might qualify for an exception to keep costs lower.

Certain patients with might qualify for an extension of in-network coverage, called continuity of care. You can apply for that extension by contacting your insurer, but the process may prove lengthy. Some hospitals have set up resources to help patients apply for that extension.

Wingler ran that gantlet for her daughter, spending hours on the phone, filling out forms, and sending faxes. But she said she didn’t have the time or energy to do that for everyone in her family.

“My son was going through physical therapy,” she said. “But I’m sorry, dude, like, just do your exercises that you already have. I’m not fighting to get you coverage too, when I’m already fighting for your sister.”

Also worth noting, if you’re dealing with a medical emergency: For most emergency services, hospitals than their in-network rates.

4. Switching your insurance carrier may need to wait.

You might be thinking of switching to an insurer that covers your preferred doctors. But be aware: Many people who choose their insurance plans during an annual open enrollment period are locked into their plan for a year. Insurance contracts with hospitals are not necessarily on the same timeline as your “plan year.”

, such as getting married, having a baby, or losing a job, can qualify you to change insurance outside of your annual open enrollment period, but your doctors’ dropping out of an insurance network is not a qualifying life event.

5. Doctor-shopping can be time-consuming.

If the split between your insurance company and hospital looks permanent, you might consider finding a new slate of doctors and other providers who are in-network with your plan. Where to start? Your insurance plan likely has an online tool to search for in-network providers near you. 

But know that making a switch could mean waiting to establish yourself as a patient with a new doctor and, in some cases, traveling a fair distance.

6. It’s worth holding on to your receipts.

Even if your insurance and hospital don’t strike a deal before their contract expires, there’s a decent chance they will still make a new agreement.

Some patients decide to put off appointments while they wait. Others keep their appointments and pay out-of-pocket. Hold on to your receipts if you do. When insurers and hospitals make up, the deals often are backdated, so the appointments you paid for out-of-pocket could be covered after all.

End of an Ordeal

Three months after the contract between Wingler’s insurance company and the hospital lapsed, the sides announced they had reached a new agreement. Wingler joined the throng of patients scheduling appointments they’d delayed during the ordeal.

In a statement, Jim Turner, a spokesperson for Anthem’s parent company, Elevance Health, wrote, “We approach negotiations with a focus on fairness, transparency, and respect for everyone impacted.”

Maze from MU Health Care said: “We understand how important timely access to pediatric specialty care is for families, and we’re truly sorry for the frustration some parents have experienced scheduling appointments following the resolution of our Anthem contract negotiations.”

Wingler was happy her family could see their providers again, but her relief was tempered by a resolve not to be caught in the same position again.

“I think we will be a little more studious when open enrollment comes around,” Wingler said. “We’d never really bothered to look at our out-of-pocket coverage before because we didn’t need it.”

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of NPR and Â鶹ŮÓÅ Health News.

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Her request for coverage had been denied, the letter said, because she’d had a body mass index of less than 35 when she started Zepbound. The 25-year-old who lives in New York had been taking Zepbound without incident for months, so she was confused: Why was her BMI, which had been around 32 when she started, becoming an issue only now?

Wensley had no interest in quitting an effective drug. “Going right off like that, it’s easier said than done,” she said.

Her doctor fought to keep her on the GLP-1 agonist, the category that includes weight loss and Type 2 diabetes drugs Ozempic, Wegovy, Mounjaro, and Zepbound. But Wensley ultimately had to switch from Zepbound to Wegovy to meet her plan’s requirements. She said she doesn’t like Wegovy as much as her old medication, but she now feels lucky to be on any GLP-1.

Lots of research suggests such medications must be used indefinitely to maintain weight loss and related health benefits. But with list prices of , public and private payers are struggling to keep up with for GLP-1 weight loss drugs and in some cases are eliminating or restricting their coverage as a result.

North Carolina Medicaid plans to for weight loss on Oct. 1, just over a year after . Pennsylvania is planning to limit Medicaid coverage to beneficiaries at the highest risk of complications from obesity. And despite of a potential federal pilot program to extend coverage of GLP-1 obesity drugs under Medicaid and Medicare, all state Medicaid programs are likely to be under pressure due to in the budget reconciliation package recently signed into law by President Donald Trump.

Already, many GLP-1 users , — often due to side effects, high costs, or insurance issues. Now a growing number of researchers, payers, and providers are exploring deliberate “deprescription,” which aims to taper some patients off their medication after they have taken it for a certain amount of time or lost a certain amount of weight.

The U.K.’s National Institute for Health and Care Excellence, which creates guidance for the , on the use of some weight loss medications, such as Wegovy. And the concept was raised in a recent Institute for Clinical and Economic Review to obesity drugs.

, who directs the Center for Value-Based Insurance Design at the University of Michigan, that if some people using GLP-1s to lose weight were eventually transitioned off, more people could take advantage of them.

“If you’re going to spend $1 billion or $100 billion, you could either spend it on fewer people for a long period of time, or you can spend it on a lot more people for a shorter period of time,” he said.

Fendrick’s employer, the University of Michigan, indeed does that. Its prescription drug plan caps coverage of GLP-1 drugs if they’re used solely for weight loss.

Jamie Bennett, a spokesperson for Wegovy and Ozempic maker Novo Nordisk, declined to comment on the concept of deprescription, noting that its drugs are intended for chronic conditions. Rachel Sorvig, a spokesperson for Zepbound and Mounjaro manufacturer Eli Lilly, said in a statement that users should “talk to their health care provider about dosage and duration needs.”

Studies have shown that people typically regain within a year of , and that many people who quit ultimately go back on the drugs.

“There’s no standard of care or gold standard on how to wean right now,” said , an obesity and internal medicine doctor with UK HealthCare in Kentucky.

But the math shows why time-limited coverage is appealing to payers that struggle to pay for beneficiaries’ GLP-1 prescriptions, said , chief medical officer for the pharmacy benefit manager CVS Caremark.

And states are “between a rock and a hard place,” said Kody Kinsley, who until January led North Carolina’s Health and Human Services Department. “They’re going to have to look at every single thing and trim dollars everywhere they can.”

Pennsylvania was looking for cost-saving strategies even before the new federal tax-and-spending law, according to Brandon Cwalina, press secretary for the state’s Department of Human Services. Pennsylvania projects it will spend $1.3 billion on GLP-1 drugs this year.

Plans could see real savings, Fendrick said, if they covered GLP-1s for initial weight loss then moved people to cheaper options — such as more affordable drugs or behavioral health programs — to maintain it.

Plenty of companies are eager to sell insurers, employers, and individuals on behavioral alternatives. One is , its nutrition-focused weight management program as “a proven approach for deprescribing GLP-1s when clinically appropriate.” assessed 154 people with Type 2 diabetes who stopped using GLP-1 medications but continued following Virta’s program, concluding that their weight did not significantly increase after a year.

Researchers affiliated with a European weight management company also that slowly tapering off the medications may help maintain weight loss.

For employers and insurers, the “initial question” was whether to cover GLP-1s for obesity, said Virta CEO Sami Inkinen. “Now, basically, everyone’s coming to the middle and asking, ‘How do we responsibly cover these drugs?’”

Part of responsible coverage, Inkinen said, is providing other forms of support to patients who stop using GLP-1 medications, by choice or otherwise.

For some people, however, maintaining weight loss without a GLP-1 remains a challenge, even with other options available.

Lily, who lives in Michigan, lost almost 80 pounds in roughly 18 months on Wegovy. But she had to quit the drug when she turned 26 and left her parents’ insurance plan this year. The plan her employer offers stopped covering GLP-1s for weight loss right around the time she joined.

Lily, who asked to be identified by only her first name because she is not out to her family as transgender, has tried other medications since then, and previously tried lifestyle programs to control her weight. But she said nothing works as well for her as Wegovy.

She has regained 20 pounds since going off the drug at the beginning of the year and worries that number will continue to rise, potentially contributing to future health problems.

“Just give people the drugs,” she said. “It seems cheaper and safer in the long run.”

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Many of her calls never got past the hold music. When they did, the hospital told her to call her insurer. The insurer told her to have the hospital fax a form to a special number. The hospital responded that they’d been instructed to send faxes to a different number.

“It was just a big loophole we were caught in, going around and around,” Frank said.

Frank and her husband, Allen, faced that ellipse of frustration because they were among 90,000 central Missouri patients caught in the middle of a contract dispute between University of Missouri, or MU, Health Care, a Columbia, Missouri-based health system, and Anthem, the couple’s health insurance provider. The companies let their contract expire in April after failing to strike a deal to keep the hospital system and its clinics in-network.

A growing number of Americans find themselves in a similar pinch. In New York City, negotiations between UnitedHealthcare and Memorial Sloan Kettering Cancer Center , briefly leaving some patients in limbo until a deal was reached the next day. In North Carolina, Duke Health recently announced unless the insurance company agreed to pay more favorable rates to the health system. And the Franks were nearly caught out-of-network previously, when between Anthem and a primary care group in Jefferson City, Missouri, prompted the couple to switch some providers to MU Health Care.

Indeed, 18% of non-federal hospitals experienced at least one documented case of public brinksmanship with an insurance company from June 2021 to May 2025, according to preliminary findings by Jason Buxbaum, a health policy researcher at the Brown University School of Health. Over the same period, 8% of hospitals ultimately went out-of-network with an insurer, at least for a time.

Industry observers say long-standing trends like hospital consolidation and rising health care costs contribute to the disputes, and Trump administration policies could make them more frequent as hospitals brace for about $1 trillion in cuts to federal health care spending as part of President Donald Trump’s sweeping budget law.

“They’re going to be more hard-nosed at negotiating with the health plans because they’re going to be in a survival mode,” said , a retired insurance executive and former board member of America’s Health Insurance Plans, the national trade group representing the health insurance industry.

During the three-month stalemate between the insurer and the health system in Missouri, patients with Anthem plans lost in-network coverage with the region’s largest — and, for some specialties, only — medical provider.

Most people were unable to switch insurance midyear and faced the choice of paying higher prices upfront, delaying care, finding new providers, or running a paperwork gauntlet in hopes their medical conditions qualified for a 90-day coverage extension.

The dispute came at a particularly inconvenient time for the Franks. Allen Frank was recovering from complications from falling off the roof while cleaning the siding of the couple’s home in Rich Fountain in October. When it happened, Amy drove him 24 miles to the nearest emergency room. The facility in Jefferson City had recently been taken over by MU Health Care, and Allen was soon transferred 30 miles farther by ground ambulance to the system’s main hospital in Columbia for surgery to insert two metal plates and several screws to repair his collarbone.

Health care consolidation has been booming nationwide for 30 years, with announced since 1998, including 428 from 2018 to 2023. Mergers may lead to some efficiencies and benefits for consumers, but they also reduce market competition and strengthen the hand of hospitals in negotiations with insurers.

“Insurer markets have been consolidated for a long time,” Brown’s Buxbaum said. “What’s changed is how consolidated the hospital markets have become.”

Now if a hospital system drops out of a network, he said, “it’s not just going to be one key hospital. It’s much more likely to be all the key facilities, or many of the critical mass of providers” in an area.

It’s a scary prospect for patients, making the public threat of a rupture a potent tool in negotiations between hospitals and insurers. That typically works in a hospital’s favor, Baackes said, “because the general assumption is the insurance is being greedy and the hospital is doing God’s work.”

In a statement, Buddy Castellano, spokesperson for Anthem’s parent company, Elevance Health, wrote, “We approach negotiations with a focus on fairness, transparency, and respect for everyone impacted. Health plan rate discussions are complex and require thoughtful collaboration to ensure long-term sustainability. Our commitment remains clear: ensuring access to care while keeping coverage affordable for the families, employers, and communities we serve.”

Allen Frank needed follow-up care in the months after his initial surgery, including a second surgery in July.

A federal law dubbed the No Surprises Act, which took effect in 2022, whose provider drops out of network due to a contract dispute. People getting treatment for serious conditions can keep their in-network rates for up to 90 days with their current providers, delaying the need to find a new one or face higher rates. So Amy Frank worked the phones to get that continuity of care for her husband.

“Our deductible was already met. If we go out-of-network, we’re going to have to start completely over for the out-of-network deductible,” she said.

Eventually, Anthem agreed to let Allen Frank continue his care with MU Health Care. But when he showed up for an appointment to get an injection in his injured shoulder, he was told the health system didn’t have a record of the approval. He refused to leave without being seen, and, eventually, a nurse was able to get through to Anthem to get a confirmation number and approval for the appointment.

“It’s just very frustrating,” Amy Frank said in early July, before the sides had reached a deal. “I’ve got my own medical issues, and I don’t feel like mine are bad enough to be fighting for a continuity of care.”

In an email, MU Health Care spokesperson Eric Maze wrote: “While our goal was to reach agreement prior to our contract terminating and to avoid disruption in care, we established processes and resources well in advance to facilitate continuity of care and reduce the burden for our patients. We understand and are sorry for the stress and concern being out of network created for many, and we are deeply grateful for the patience and trust placed in us during this time.”

Rising health care costs are fueling contract disputes. Hospital expenses grew 5.1% in 2024, according to a recent , outpacing the 2.9% inflation rate. Labor costs are the biggest driver, with advertised nursing salaries rising 26.6% faster than inflation from 2020 to 2024, the brief noted.

Hospitals want to recoup those costs by pressing insurance companies to pay more for services.

Washington University in St. Louis health economist Tim McBride said that dynamic could be further enflamed by the massive tax-and-spending law. The measure makes significant cuts to federal health care spending over the next decade, including a $911 billion drop in Medicaid spending, and is expected to cause 10 million Americans to lose their insurance.

As negotiations between MU Health Care and Anthem broke down, the insurer claimed the hospital was seeking a 39% rate increase over three years, while the hospital said the insurer wouldn’t budge past 1%-2%.

On June 30, three months into the standoff, the Missouri Senate Insurance and Banking Committee called the two sides in for a hearing that broke months of deadlock and prompted new proposals from Anthem.

“Anthem doubled their rate increase offer,” Missouri Senate President Cindy O’Laughlin, a Republican whose district includes parts of central Missouri, on July 8, encouraging a deal.

“Yes I know that I’m not on the inside nor the CEO of either but from what I’ve been told this seems a reasonable offer.”

The sides one week later that was retroactive to April 1, the day the previous contract expired.

Amy Frank got several texts from friends and family about the agreement. She’d been so vocal about her frustrations, they wanted to make sure she’d seen the news. But her relief was subdued.

“So you put everybody through all of this for nothing?” she said the day after the deal was announced.

She had already sunk hours on the phone to ensure Allen’s July 31 surgery to repair the plates holding his clavicle together would be covered. She was in no rush to call her doctors to reschedule the appointments she’d skipped, figuring their phone lines would be busy. The experience had her wondering if the two sides were trying to get people upset as a bargaining tactic.

“That money that they’re fighting over — is that really worth all of the stress?” she said.

And after going through two disputes in three years, she can’t help but wonder: How long until the next one?

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Insurers want higher premiums to cover the usual culprits — rising medical and labor costs and usage — but are tacking on extra percentage point increases in their 2026 rate proposals to cover effects of policy changes advanced by the Trump administration and the Republican-controlled Congress. One key factor built into their filings with state insurance departments: uncertainty over whether Congress allows more generous, covid-era ACA tax subsidies to expire at the end of December.

“The out-of-pocket change for individuals will be immense, and many won’t actually be able to make ends meet and pay premiums, so they will go uninsured,” said JoAnn Volk, co-director of the Center on Health Insurance Reforms at Georgetown University.

Especially if the higher subsidies expire, insurance premiums will be among the first financial pains felt by health care consumers after policy priorities put forward by President Donald Trump and the GOP. Many other changes — such as additional paperwork requirements and spending cuts to Medicaid — won’t occur for at least another year. But spiking ACA premiums, as the nation heads into key midterm elections, invites political pushback. Some on Capitol Hill are exploring ways to temper the subsidy reductions.

“I am hearing on both sides — more from Republicans, but from both the House and Senate” — that they are looking for levers they can pull, said Pennsylvania-based insurance broker Joshua Brooker, who follows legislative actions as part of his job and sits on several insurance advisory groups.

In initial filings, insurers nationally are seeking a median rate increase — meaning half of the proposed increases are lower and half higher — of 15%, for the Peterson-Â鶹ŮÓÅ Health System Tracker covering 19 states and the District of Columbia. Â鶹ŮÓÅ is a national health information nonprofit that includes Â鶹ŮÓÅ Health News.

That’s up sharply from the last few years. For the 2025 plan year, for example, Â鶹ŮÓÅ found that the median proposed increase was 7%.

Health insurers “are doing everything in their power to shield consumers from the rising costs of care and the uncertainty in the market driven by recent policy changes,” wrote Chris Bond, a spokesperson for AHIP, the industry’s lobbying group. The emailed response also called on lawmakers “to take action to extend the health care tax credits to prevent skyrocketing cost increases for millions of Americans in 2026.”

Neither the White House nor the Department of Health and Human Services responded to requests for comment.

These are initial numbers and insurance commissioners in some states may alter requests before approval.

Still, “it’s the biggest increase we’ve seen in over five years,” said analysis co-author Cynthia Cox, a Â鶹ŮÓÅ vice president and director of its Program on the ACA.

Premiums will vary based on where consumers live, the type of plan they choose, and their insurer.

For example, Maryland insurers have requested increases ranging from 8.1% to 18.7% for the upcoming plan year, by Georgetown University researchers. A much larger swing is seen in New York, where one carrier is asking for less than a 1% increase, while another wants 66%. Maryland rate filings indicated the average statewide increase would shrink to 7.9% from 17.1% — if the ACA’s enhanced tax credits are extended.

Most insurers are asking for 10% to 20% increases, the Â鶹ŮÓÅ report says, with several factors driving those increases. For instance, insurers say underlying medical costs — including the use of expensive obesity drugs — will add about 8% to premiums for next year. And most insurers are also adding 4% above what they would have charged had the enhanced tax credits been renewed.

But rising premiums are just part of the picture.

A bigger potential change for consumers’ pocketbooks hinges on whether Congress decides to extend more generous tax credits first put in place during President Joe Biden’s term as part of the American Rescue Plan Act in 2021, then extended through the Inflation Reduction Act in 2022.

Those laws raised the subsidy amounts people could receive based on their household income and local premium costs and removed a cap that had barred higher earners from even partial subsidy assistance. Higher earners could still qualify for some subsidy but first had to toward the premiums.

Across the board, but especially among lower-income policyholders, bigger subsidies in ACA plans.

But they’re also costly.

A permanent extension over the next decade, according to the Congressional Budget Office.

Such an extension was left out of the policy law Trump signed on July 4 that he called the “One Big Beautiful Bill.” Without action, the extra subsidies will expire at the end of this year, after which the tax credits will revert to less generous pre-pandemic levels.

That means two things: Most enrollees will be on the hook to pay a larger share of their premiums as assistance from federal tax credits declines. Secondly, people whose household income exceeds — $84,600 for a couple or $128,600 for a family of four this year — won’t get any subsidies at all.

If the subsidies expire, policy experts estimate, the average amount people pay for coverage . In some states, ACA premiums could double.

“There will be sticker shock,” said Josh Schultz, strategic engagement manager at Softheon, a New York consulting firm that provides enrollment, billing, and other services to about 200 health insurers, many of which are bracing for enrollment losses.

And enrollment could fall sharply. that the combination of expiring tax credits, the Trump law’s new paperwork, and other requirements will result in ACA enrollment dropping by as much as 57%.

According to Â鶹ŮÓÅ, insurers added premium increases of around 4% just to cover the expiration of the enhanced tax credits, which they fear will lead to lower enrollment. That would further raise costs, insurers say, because people who are less healthy are more likely to grit their teeth and reenroll, leaving insurers with a smaller, but sicker, pool of members.

Less common in the filings submitted so far, but noticeable, are increases pegged to Trump administration tariffs, Cox said.

“What they are assuming is tariffs will drive drug costs up significantly, with some saying that can have around a 3-percentage-point increase” in premiums as a result, she said.

Consumers will learn their new premium prices only late in the fall, or when open enrollment for the ACA begins on Nov. 1 and they can start shopping around.

Congress could still act, and discussions are ongoing, said insurance broker Brooker.

Some lawmakers, he said, are consulting with the CBO about the fiscal and coverage effects of various scenarios that don’t extend the subsidies as they currently exist but may offer a middle ground. One possibility involves allowing subsidies for families earning as much as five or six times the poverty level, he said.

But any such effort will draw pushback.

Some conservative think tanks, such as the Paragon Health Institute, to fudge their incomes to qualify and led to other types of fraud, such as brokers signing people up for ACA plans without authorization.

But others note that many consumers — Democratic and Republican — have come to rely on the additional assistance. Not extending it could be risky politically. lived in Republican congressional districts, and 76% were in states won by Trump.

Allowing the enhanced subsidies to expire could also reshape the market.

Brooker said some people may drop coverage. Others will shift to plans with lower premiums but higher deductibles. One provision of Trump’s new tax law allows people enrolled in either “bronze” or “catastrophic”-level ACA plans, which are usually the cheapest, to qualify for health savings accounts, which allow people to set aside money, tax-free, to cover health care costs.

“Naturally, if rates do start going up the way we anticipate, there will be a migration to lower-cost options,” Brooker said.

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Dozens of insurance companies, including Cigna, Aetna, Humana, and UnitedHealthcare, agreed to several measures, which include making fewer medical procedures subject to prior authorization and speeding up the review process. Insurers also pledged to use clear language when communicating with patients and promised that medical professionals would review coverage denials.

While Trump administration officials applauded the insurance industry for its willingness to change, they acknowledged limitations of the agreement.

“The pledge is not a mandate,” Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said during a news conference. “This is an opportunity for the industry to show itself.”

Oz said that insurance preapprovals for some procedures are appropriate, citing knee arthroscopy, a common, minimally invasive procedure to diagnose and treat knee problems that some studies suggest . Chris Klomp, director of the Center for Medicare at CMS, recommended prior authorization be eliminated for vaginal deliveries, colonoscopies, and cataract surgeries, among other procedures. Health insurers said the changes would benefit most Americans, including those with commercial or private coverage, Medicare Advantage, and Medicaid managed care.

The insurers have also agreed that patients who switch insurance plans may continue receiving treatment or other health care services for 90 days without facing immediate prior authorization requirements imposed by their new insurer.

But health policy analysts say prior authorization — a system that forces some people to delay care or abandon treatment — may continue to pose serious health consequences for affected patients. That said, many people may not notice a difference, even if insurers follow through on their new commitments.

“So much of the prior authorization process is behind the black box,” said Kaye Pestaina, director of the Program on Patient and Consumer Protections at Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ Health News.

Often, she said, patients aren’t even aware that they’re subject to prior authorization requirements until they face a denial.

“I’m not sure how this changes that,” Pestaina said.

The follows the killing of UnitedHealthcare CEO Brian Thompson, who was shot in midtown Manhattan in early December on the way to an investor meeting, forcing the issue of prior authorization to the forefront.

Oz acknowledged “violence in the streets” prompted Monday’s announcement. Klomp told Â鶹ŮÓÅ Health News that insurers were reacting to the shooting because the problem has “reached a fever pitch.” Health insurance CEOs now move with security details wherever they go, Klomp said.

“There’s no question that health insurers have a reputation problem,” said Robert Hartwig, an insurance expert and a clinical associate professor at the University of South Carolina.

The pledge shows that insurers are hoping to stave off “more draconian” legislation or regulation in the future, Hartwig said.

But government interventions to improve prior authorization will be used “if we’re forced to use them,” Oz said during the news conference.

“The administration has made it clear we’re not going to tolerate it anymore,” he said. “So either you fix it or we’re going to fix it.”

Here are the key takeaways for consumers:

1. Prior authorization isn’t going anywhere.

Health insurers will still be allowed to deny doctor-recommended care, which is arguably the biggest criticism that patients and providers level against insurance companies. And it isn’t clear how the new commitments will protect the sickest patients, such as those diagnosed with cancer, who need the most expensive treatment.

2. Reform efforts aren’t new.

Most states have already passed at least one law imposing requirements on insurers, often intended to reduce the time patients spend waiting for answers from their insurance company and to require transparency from insurers about which prescriptions and procedures require preapproval. Some states have also enacted “gold card” programs for doctors that allow physicians with a robust record of prior authorization approvals to bypass the requirements.

Nationally, rules proposed by the first Trump administration and finalized by the Biden administration are already set to take effect next year. They will require insurers to respond to requests within seven days or 72 hours, depending on their urgency, and to process prior authorization requests electronically, instead of by phone or fax, among other changes. Those rules apply only to certain categories of insurance, including Medicare Advantage and Medicaid.

Beyond that, some insurance companies committed to improvement long before Monday’s announcement. Earlier this year, UnitedHealthcare pledged to reduce prior authorization volume by 10%. Cigna announced its own set of improvements in February.

3. Insurance companies are already supposed to be doing some of these things.

For example, the Affordable Care Act already requires insurers to communicate with patients in plain language about health plan benefits and coverage.

But denial letters remain confusing because companies tend to use jargon. For instance, AHIP, the health insurance industry trade group, used the term “non-approved requests” in Monday’s announcement.

Insurers also pledged that medical professionals would continue to review prior authorization denials. AHIP claims this is “a standard already in place.” But recent lawsuits allege otherwise, accusing companies of denying claims in a matter of seconds.

4. Health insurers will increasingly rely on artificial intelligence.

Health insurers issue millions of denials every year, though most prior authorization requests are quickly, sometimes even instantly, approved.

The use of AI in making prior authorization decisions isn’t new — and it will probably continue to ramp up, with insurers pledging Monday to issue 80% of prior authorization decisions “in real-time” by 2027.

“Artificial intelligence should help this tremendously,” Rep. Gregory Murphy (R-N.C.), a physician, said during the news conference.

“But remember, artificial intelligence is only as good as what you put into it,” he added.

Results from a survey published by the American Medical Association in February indicated 61% of physicians are concerned that the use of AI by insurance companies is already increasing denials.

5. Key details remain up in the air.

Oz said CMS will post a full list of participating insurers this summer, while other details will become public by January.

He said insurers have agreed to post data about their use of prior authorization on a public dashboard, but it isn’t clear when that platform will be unveiled. The same holds true for “performance targets” that Oz spoke of during the news conference. He did not name specific targets, indicate how they will be made public, or specify how the government would enforce them.

While the AMA, which represents doctors, applauded the announcement, “patients and physicians will need specifics demonstrating that the latest insurer pledge will yield substantive actions,” the association’s president, Bobby Mukkamala, said in a statement. He noted that health insurers made “past promises” to improve prior authorization in 2018.

Meanwhile, it also remains unclear what services insurers will ultimately agree to release from prior authorization requirements.

Patient advocates are in the process of identifying “low-value codes,” Oz said, that should not require preapproval, but it is unknown when those codes will be made public or when insurers will agree to release them from prior authorization rules.

Do you have an experience with prior authorization you’d like to share? to tell your story.

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All went to physical therapy, but their health insurers stopped paying before any could walk without assistance. Paulo spent nearly $1,500 out of her own pocket for more sessions.

Millions of Americans rely on physical and occupational therapists to regain strength and motor skills after operations, diseases, and injuries. But recoveries are routinely stymied by a widespread constraint in health insurance policies: rigid caps on therapy sessions.

Insurers frequently limit such sessions to as few as 20 a year, a Â鶹ŮÓÅ Health News examination finds, even for people with severe damage such as spinal cord injuries and strokes, who may need months of treatment, multiple times a week. Patients can face a bind: Without therapy, they can’t return to work, but without working, they can’t afford the therapy.

Paulo said she pressed her insurer for more sessions, to no avail. “I said, ‘I’m in pain. I need the services. Is there anything I can do?’” she recalled. “They said, no, they can’t override the hard limit for the plan.”

A typical physical therapy session for a privately insured patient to improve daily functioning on average, according to the Health Care Cost Institute. Most run from a half hour to an hour.

Insurers say annual visit limits help keep down costs, and therefore premiums, and are intended to prevent therapists from continuing treatment when patients are no longer improving. They say most injuries can be addressed in a dozen or fewer sessions and that people and employers who bought insurance could have purchased policies with better therapy benefits if it was a priority.

Atul Patel, a physiatrist in Overland Park, Kansas, and the treasurer of the American Academy of Physical Medicine and Rehabilitation, said insurers’ desire to prevent gratuitous therapy is understandable but has “gone too far.”

“Most patients get way less therapy than they would actually benefit from,” he said.

Hard caps on rehab endure in part because of an omission in the Affordable Care Act. While that law and barred them from setting spending restrictions on a patient’s medical care, it did not prohibit establishing a maximum number of therapy sessions a year.

More than 29,000 ACA health plans — nearly 4 in 5 — limit the annual number of physical therapy sessions, according to a Â鶹ŮÓÅ Health News analysis of plans sold last year to individuals and small businesses. Caps generally ranged from 20 to 60 visits; the most common was 20 a year.

Health plans provided by employers often have limits of 20 or 30 sessions as well, said Cori Uccello, senior health fellow at the American Academy of Actuaries.

“It’s the gross reality in America right now,” said Sam Porritt, chairman of the Falling Forward Foundation, a Kansas-based philanthropy that for about 200 patients who exhausted their insurance over the past decade. “No one knows about this except people in the industry. You find out about it when tragedy hits.”

Even in plans with no caps, patients are not guaranteed unlimited treatment. Therapists say insurers repeatedly require prior authorization, demanding a new request every two or three visits. Insurers frequently deny additional sessions if they believe there hasn’t been improvement.

“We’re seeing a lot of arbitrary denials just to see if you’ll appeal,” said Gwen Simons, a lawyer in Scarborough, Maine, who represents therapy practices. “That’s the point where the therapist throws up their hands.”

‘Couldn’t Pick Her Up’

Katie Kriegshauser, a 37-year-old psychologist from Kansas City, Missouri, developed pregnancy complications that shut down her liver, pancreas, and kidneys in November 2023. After giving birth to her daughter, she spent more than three months in a hospital, undergoing multiple surgeries and losing more than 40 pounds so quickly that doctors suspected her nerves became damaged from compression. Her neurologist told her he doubted she would ever walk again.

Kriegshauser’s UnitedHealthcare insurance plan allowed 30 visits at Ability KC, a rehabilitation clinic in Kansas City. She burned through them in six weeks in 2024 because she needed both physical therapy, to regain her mobility, and occupational therapy, for daily tasks such as getting dressed.

“At that point I was starting to use the walker from being completely in the wheelchair,” Kriegshauser recalled. She said she wasn’t strong enough to change her daughter’s diaper. “I couldn’t pick her up out of her crib or put her down to sleep,” she said.

The Falling Forward Foundation paid for additional sessions that enabled her to walk independently and hold her daughter in her arms. “A huge amount of progress happened in that period after my insurance ran out,” she said.

In an unsigned statement, UnitedHealthcare said it covered the services that were included in Kriegshauser’s health plan. The company declined to permit an official to discuss its policies on the record because of security concerns.

A Shattered Teenager

Patients who need therapy near the start of a health plan’s year are more likely to run out of visits. Mari Villar was 15 and had been walking with high school friends to get a bite to eat in May 2023 when a car and smashed into her before the driver sped away.

The accident broke both her legs, lacerated her liver, damaged her colon, severed an artery in her right leg, and collapsed her lung. She has undergone 11 operations, including emergency exploratory surgery to stop internal bleeding, four angioplasties, and the installation of screws and plates to hold her leg bones together.

Villar spent nearly a month in Shirley Ryan AbilityLab’s hospital in Chicago. She was discharged after her mother’s insurer, Blue Cross and Blue Shield of Illinois, denied her physician’s request for five more days, making her more reliant on outpatient therapy, according to records shared by her mother, Megan Bracamontes.

Villar began going to one of Shirley Ryan’s outpatient clinics, but by the end of 2023, she had used up the 30 physical therapy and 30 occupational therapy visits the Blue Cross plan allowed. Because the plan ran from July to June, she had no sessions left for the first half of 2024.

“I couldn’t do much,” Villar said. “I made lots of progress there, but I was still on crutches.”

Dave Van de Walle, a Blue Cross spokesperson, said in an email that the insurer does not comment on individual cases. Razia Hashmi, vice president for clinical affairs at the Blue Cross Blue Shield Association, said in a written statement that patients who have run out of sessions should “explore alternative treatment plans” including home exercises.

Villar received some extra sessions from the Falling Forward Foundation. While her plan year has reset, Villar is postponing most therapy sessions until after her next surgery so she will be less likely to run out again. Bracamontes said her daughter still can’t feel or move her right foot and needs three more operations: one to relieve nerve pain, and two to try to restore mobility in her foot by lengthening her Achilles tendon and transferring a tendon in her left leg into her right.

“Therapy caps are very unfair because everyone’s situation is different,” Villar said. “I really depend on my sessions to get me to a new normalcy. And not having that and going through all these procedures is scary to think about.”

Rationing Therapy

Most people who use all their sessions either stop going or pay out-of-pocket for extra therapy.

Amy Paulo, a 34-year-old Massachusetts woman recovering from two operations on her left leg, maxed out the 40 visits covered by Blue Cross Blue Shield of Massachusetts in 2024, so she spent $1,445 out-of-pocket for 17 therapy sessions.

Paulo needed physical therapy to recover from several surgeries to shorten her left leg to the length of her right leg — the difference a consequence of juvenile arthritis. Her recovery was prolonged, she said, because her femur didn’t heal properly after one of the operations, in which surgeons cut out the middle of her femur and put a rod in its place.

“I went ballistic on Blue Cross many, many times,” said Paulo, who works with developmentally delayed children.”

Amy McHugh, a Blue Cross spokesperson, declined to discuss Paulo’s case. In an email, she said most employers who hire Blue Cross to administer their health benefits choose plans with “our standard” 60-visit limit, which she said is more generous than most insurers offer, but some employers “choose to allow for more or fewer visits per year.”

Paulo said she expects to restrict her therapy sessions to once a week instead of the recommended twice a week because she’ll need more help after an upcoming operation on her leg.

“We had to plan to save my visits for this surgery, as ridiculous as it sounds,” she said.

Medicare Is More Generous

People with commercial insurance plans face more hurdles than those on Medicare, which sets dollar thresholds on therapy each year but allows therapists to continue providing services if they document medical necessity. This year the limits are $2,410 for physical and speech therapy and $2,410 for occupational therapy.

Private Medicare Advantage plans don’t have visit or dollar caps, but they often require prior authorization every few visits. The U.S. Senate Permanent Subcommittee on Investigations found last year that MA plans for physical and occupational therapy at hospitals and nursing homes at higher rates than they reject other medical services.

Therapists say many commercial plans require prior authorization and mete out approvals parsimoniously. Insurers often make therapists submit detailed notes, sometimes for each session, documenting patients’ treatment plans, goals, and test results showing how well they perform each exercise.

“It’s a battle of getting visits,” said Jackee Ndwaru, an occupational therapist in Jacksonville, Florida. “If you can’t show progress they’re not going to approve.”

An Insurer Overruled

Marjorie Haney’s insurance plan covered 20 therapy sessions a year, but Anthem Blue Cross Blue Shield approved only a few visits at a time for the rotator cuff she tore in a bike accident in Maine. After 13 visits in 2021, Anthem refused to approve more, writing that her medical records “do not show you made progress with specific daily tasks,” according to the denial letter.

Haney, a physical therapist herself, said the decision made no sense because at that stage of her recovery, the therapy was focused on preventing her shoulder from freezing up and gradually expanding its range of motion.

“I went through those visits like they were water,” Haney, now 57, said. “My range was getting better, but functionally I couldn’t use my arm to lift things.”

Haney appealed to Maine’s insurance bureau for an independent review. In its report overturning Anthem’s decision, the bureau’s physician consultant, William Barreto, concluded that Haney had made “substantial improvement” — she no longer needed a shoulder sling and was able to return to work with restrictions. Barreto also noted that nothing in Anthem’s policy required progress with specific daily tasks, which was the basis for Anthem’s refusal.

“Given the member’s substantial restriction in active range of motion and inability to begin strengthening exercises, there is remaining deficit that requires the skills and training of a qualified physical therapist,” the report said.

Anthem said it requires repeated assessments before authorizing additional visits “to ensure the member is receiving the right care for the right period of time based on his or her care needs.” In the statement provided by Stephanie DuBois, an Anthem spokesperson, the insurer said this process “also helps prevent members from using up all their covered treatment benefits too quickly, especially if they don’t end up needing the maximum number of therapy visits.”

In 2023, Maine passed for the first 12 rehab visits, making it one of the few states to curb insurer limitations on physical therapy. The law doesn’t protect residents with plans based in other states or plans from a Maine employer who self-insures.

Haney said after she won her appeal, she spaced out the sessions her plan permitted by going once weekly. “I got another month,” she said, “and I stretched it out to six weeks.”

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In , a Health and Human Services inspector general audit found that the insurers pocketed $7.5 billion in 2023 from diagnosing health conditions that prompted no medical services — about $4.2 billion of it through the health assessments done in patients’ homes.

Assistant Inspector General Erin Bliss told me the plans are raking in billions of dollars without providing any treatment for medical conditions the plans flagged during the visits, including serious diseases such as diabetes and major depression.

But the power to curb billing tied to home visits rests with regulators at the Centers for Medicare and Medicaid Services, who appear unmoved by the OIG’s criticism.

In a statement to Â鶹ŮÓÅ Health News by spokesperson Alexx Pons, CMS said it “appreciates the OIG’s review in this area” and will keep studying the issue.

In a formal response published in the audit report, CMS said it disagreed with the watchdog’s call to restrict use of home health assessments in computing how much to pay health plans. People on Medicare “should have access to care that is appropriately provided in the home setting,” CMS wrote.

That’s just fine with the insurance industry. The OIG drew “inaccurate conclusions,” said Heather Soule, a spokesperson for UnitedHealthcare. The insurer is the largest Medicare Advantage contractor and accounted for about two-thirds of the payments tied to home visits and related data mining of patient files cited in the audit.

The home visits are “among the most comprehensive and thorough assessments of a patient’s health and physical environment available in the health-care system, helping to identify and drive needed follow-on care for the vast majority of the patients with whom we engage,” Soule said in the statement.

Medicare Advantage plans serve more than 33 million Americans, more than half of the people eligible for Medicare.

Government spending on the program, which is dominated by a handful of private health insurance companies, is expected to hit  this year. The industry  most Medicare Advantage enrollees are satisfied with the care they receive and typically pay less out-of-pocket than those enrolled in original Medicare.

But critics of the program point to years and years of , whistleblower lawsuits and other investigations revealing that many health plans exaggerate how sick patients are to boost their payments.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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