But rising costs are straining that system like never before. As premiums balloon, employers have started to pass on more costs to their workers, and the percentage of small businesses offering employees health insurance has dropped significantly.

Stat reporter Bob Herman has been covering this in his series “.” An Arm and a Leg host Dan Weissmann and Herman break down how businesses big and small handle the skyrocketing cost of providing health insurance and what it means for workers.

Credits

An Arm and a Leg is a co-production of Ñî¹óåú´«Ã½Ò•îl 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 . And if you’ve got stories to tell about the healthcare system, the producers would love to .

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This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

The race is in Iowa, whose Medicaid program has been plagued with controversy since 2016, when the state hired national insurance companies to manage billions of dollars’ worth of benefits.

That shift was made by then-Gov. Terry Branstad, a Republican. With his executive order, Iowa joined most other states in privatizing the management of Medicaid, which covers healthcare for more than 67 million Americans with low incomes or disabilities.

The arguments have resurfaced this year during the competition to replace Republican Gov. Kim Reynolds, who was Branstad’s protégé and continued contracting with private companies to manage Medicaid benefits. Zach Lahn, the Republican candidate to succeed the retiring governor, supports the practice. Rob Sand, the Democratic candidate, wants to end it.

“It’s been a disaster,” said Sand, Iowa’s state auditor. “The number of complaints has been catastrophic.”

Pros and Cons

Supporters of privatization say the insurers, known as managed-care organizations, make Medicaid more effective and efficient. Critics contend the companies pad their profits by denying payment for crucial health services and by shortchanging agencies and professionals who provide care.

Iowa is among 41 states, plus the District of Columbia, that contract with outside companies to run at least part of their Medicaid programs. Overall, private insurers manage the benefits of more than three-quarters of Medicaid patients. Connecticut is the only state that has fully reversed course after privatizing its Medicaid system.

Sand has criticized privatized Medicaid for years. As state auditor, he alleging that the national insurers systematically deny or delay payment for services to which Medicaid participants are entitled.

He has vowed not to renew state contracts with the three insurers managing care for more than 600,000 Iowans on Medicaid, which is jointly financed by the state and federal governments. He would rather have state employees or nonprofit agencies review and pay bills from clinics, hospitals, and other healthcare providers.

Lahn told Ñî¹óåú´«Ã½Ò•îl Health News that Sand’s pledge to resume state administration of Medicaid “is the exact wrong idea.”

Lahn is a former activist for Americans for Prosperity, a national pro-business group affiliated with the Koch family. He contends that state governments and Medicaid participants benefit when insurers compete to serve them.

“There are very few things that government does more efficiently than the private sector,” he said.

Lahn, who is a businessman and farmer, emphasized that state officials should strictly enforce contract requirements, ensuring that the insurers treat Medicaid recipients fairly and make prompt payments to care providers. He also said he would bar insurers from using artificial intelligence systems to determine whether to pay for medical claims under Medicaid. “Iowans deserve to have a human looking at their case,” he said.

Sand said in a recent interview that he doesn’t want Iowa to fully return to a “fee-for-service” Medicaid system, in which hospitals, clinics, and other healthcare agencies would effectively be paid piecemeal for whatever services they provided. Instead, he said, state employees or nonprofit organizations could take over operation of a managed-care system, in which administrators review services to help ensure Medicaid participants receive what they need without wasting public money on ineffective services.

A few months ago, Republicans controlling the Iowa Legislature considered a bill to require the state to have a privately managed Medicaid system. That proposal would have blocked future governors from unilaterally shifting back to public management of the program. But the bill

Sand, a former assistant state attorney general, said he is confident he would have legal authority as governor to stop contracting with private Medicaid managers, although he cautioned that the transition would be complicated and could take time.

A Toss-Up Race

National political observers say the Iowa governor’s race

This June, Lahn won an underdog primary campaign to beat a sitting congressman backed by President Donald Trump. Lahn gained Trump’s endorsement after winning the Republican primary. He is a vocal supporter of the Make America Healthy Again movement, led by Health and Human Services Secretary Robert F. Kennedy Jr., which aims to improve Americans’ diets and reduce environmental poisons.

Sand noted that Lahn’s past political activism included a failed 2014 attempt to defeat a proposal to cover more people under Montana’s Medicaid program.

Lahn said that at the time he worried the federal government would reduce how much money it would contribute to such Medicaid expansions, leaving states to foot much of the bill. He said he also didn’t want to see public programs such as Medicaid giving benefits to adults capable of providing for themselves. But he said those concerns have been allayed, partly by the Trump administration’s moves to require millions of Medicaid recipients to prove they are working, volunteering, or going to school.

If elected governor, he said, he would not try to reverse Iowa’s expansion of Medicaid, which happened in 2014 under Branstad.

Branstad also is the governor who decided in 2016 to hire private insurers to manage Medicaid.

Branstad, who declined to comment for this article, did not need the legislature to approve his momentous decision. He weathered controversy over the change, including allegations that the companies systematically denied payment for care that people with disabilities needed to remain in their homes.

Andy Schneider, a who studies health policy issues, said it’s understandable that many government leaders see an advantage in hiring private Medicaid management companies. Each state’s Medicaid program pays claims for hundreds of thousands or even millions of members, and administrators must scrutinize bills from thousands of hospitals, clinics, and other healthcare organizations. “That’s a heavy lift,” said Schneider, who worked in federal Medicaid administration when Barack Obama was president.

Schneider noted that Medicaid expenses are among the biggest parts of any state’s budget. The costs can vary dramatically year to year, he said, which is hard for legislators and governors to plan for. Management companies sign contracts for set amounts of money per enrollee, depending on people’s ages and health conditions. Managed-care companies say they can improve Medicaid members’ health and reduce expenses. But Schneider said have been unable to confirm or disprove those claims.

Federal law gives states flexibility in how they run their Medicaid programs, including whether they hire private insurers to manage the programs. “Unwinding those arrangements might take a little time, but there’s no question they can do it,” Schneider said.

Connecticut of private insurers to run Medicaid in 2012. to contract only with nonprofit insurers, starting in 2025, and that state’s governor doing away with private management altogether.

Gary Jessee, a former Texas Medicaid director who helped transition that state’s program into managed care, noted that most Americans’ health coverage is managed by some kind of insurance company, whether they obtain it on their own or get it through a government or employer plan.

Jessee now helps run a whose clients include Medicaid managed-care companies. He said states rarely talk about totally scrapping contracts with such companies. Instead, he said, states have options to change the contracts, including to increase oversight or limit profits.

Overall, Jessee said, managed-care companies help Medicaid enrollees obtain the services they need to stay healthy. But it’s hard to calculate how much money the companies save states, he said, because all healthcare costs have been rising, and new members of managed-care plans may at first use more services as the insurance companies encourage them to get regular checkups instead of waiting for emergencies.

Iowa’s Medicaid program is managed by three insurers: Molina Healthcare, Elevance Health subsidiary Wellpoint, and Centene subsidiary Iowa Total Care.

None responded to requests for comment for this article.

Catherine Gray of Des Moines helps run a Facebook page for families who use Iowa’s Medicaid system. Her adult son, John, is on Medicaid because of a disability. Gray said the managed-care companies have made it much harder for people to obtain services, including mental healthcare, dental care, and transportation to health appointments. Iowa’s shift to the private system was abrupt and chaotic, she said. “We know people have died,” she said.

Gray said she probably will vote for Sand for governor, even though she doesn’t agree with every nuance of his stance on Medicaid. She suspects many other Iowans who use the program will do the same. “They’ve really been put through the wringer for 10 years, and they’re exhausted.”

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

The Office of Personnel Management posted last month that it will begin routinely collecting identifiable, personal health information on more than 8 million people — despite concerns from privacy advocates and Democrats, who have demanded the agency drop the plan. The notice will go into effect July 24, allowing OPM to begin its collection at any point afterward.

In reaction to privacy concerns raised by insurers and others, OPM now says the identities of enrollees will be “pseudonymized” — meaning names, addresses, and Social Security numbers will be removed — before the agency’s analysts review the massive new health datasets it will soon begin receiving.

Birth years of enrollees will be retained, and the agency’s “technical staff” will receive member IDs that it will scramble into different, unique numbers before releasing them to other staffers, according to the notice.

But the notice also specifies that OPM retains the right to reidentify the records.

Sixty-five insurance companies will be required to routinely send OPM detailed data — including names, addresses, doctor information, diagnoses, prescriptions filled, and payment details — on health care services paid through the Federal Employees Health Benefits and Postal Service Health Benefits programs.

In a change to its original proposal, first reported by Ñî¹óåú´«Ã½Ò•îl Health News, the agency says it also wants to peek at records kept by Medicare, the federally funded health insurance for older and disabled Americans, to examine claims from federal employees and retirees, and their families, who depend on both programs.

In its latest notice, OPM argues that the vast trove of data is necessary to ferret out fraud and overpayments in the FEHB and PSHB programs. Those programs cost roughly , with about $50 billion covered by the federal government and $30 billion funded by enrollees. The Trump administration has ramped up efforts, led by Vice President JD Vance, to curtail what it says is rampant fraud and misuse of publicly funded health benefits.

The effort still faces criticism that it doesn’t go far enough to protect the privacy of federal workers and their families.

“Clearly, this administration has not earned our trust with Americans’ sensitive data,” Sen. Mark Warner (D-Va.) said in an emailed statement to Ñî¹óåú´«Ã½Ò•îl Health News. “If OPM wants to work in good faith to reduce fraud, they should come to Congress, including to folks like me who are engaged on this issue and represent many federal workers and retirees and their families, and work to build consensus and trust before implementing these sweeping changes.”

The , posted in December, sparked concerns in part because it did not specify what the Trump administration planned to do with the sensitive health information it receives — and did not instruct insurers to redact identifying information.

OPM General Counsel Kurt Dykstra said the detailed records are critical to the administration’s mission of rooting out fraud and could help identify fraud perpetrated not only by medical providers but also by enrollees.

But when pressed for instances of workers, retirees, or their relatives committing such fraud, Dykstra only noted generally that healthcare fraud does occur.

The information could demonstrate “potential anomalies in usage patterns that could be related to the individual, but really also could be related to the provider, the treater, the clinic — whoever it is that’s actually providing the care,” Dykstra told Ñî¹óåú´«Ã½Ò•îl Health News in an interview.

Records deemed suspicious by OPM’s data analysts could then be referred to the agency’s Office of the Inspector General for further investigation, which could include “determining who’s involved and what the potential issues are, what the ramifications look like,” Dykstra said.

OPM’s plan to collect and analyze medical records has prompted unease among unions and federal workers, to mass firings and layoffs — in some cases, they say, driven by political retribution — since President Donald Trump took office.

Health privacy lawyers say, too, that while pseudonymizing workers’ details is a step in the right direction, it might not go far enough to protect their privacy.

OPM’s notice mostly complies with the Health Insurance Portability and Accountability Act, the federal law commonly called HIPAA that protects sensitive health data from being shared, said Matt Fisher, a health privacy lawyer. But he noted one exception: The member ID that insurers provide enrollees can be used to identify them.

“The described process arguably comes down to trusting internal controls in OPM to ensure that data is walled off as proposed,” Fisher said in an email. “The ideal would be for only truly de-identified information to be shared in the first place.”

Insurers regularly share information about claims with employers who offer health plans to employees, in efforts to control costs. But since employers themselves are not covered by HIPAA, large datasets are typically de-identified, meaning the insurers remove identifying information such as employees’ names or addresses, to comply with the law.

Employers, too, have been accused of using health information to target employees for dismissals. Most recently, a group of Meta employees filed a lawsuit of using artificial intelligence to target for layoffs those who had taken medical or family leave.

Pseudonymizing details such as names or addresses would go only so far to protect privacy, since medical conditions in particular can make it very easy to identify certain employees, said Joseph Lorenzo Hall, a technologist at the Center for Democracy & Technology, a nonprofit that advocates for data privacy.

“The richer the data, the more likely it is going to be identifying,” Hall said.

“In this case, you may be the only person in a region that has that particular kind of medical procedure, condition, or even prescription,” he said. “All of those things can be extremely identifying, even when you remove or obfuscate or pseudonymize direct identifiers.”

Most federal retirees decide to continue with FEHB plans and enroll in Medicare once they turn 65, which provides more comprehensive coverage and allows family members to remain enrolled in FEHB plans, said John Hatton, the staff vice president for policy and programs at the National Active and Retired Federal Employees Association.

OPM wants to analyze medical records for those dual enrollees as well. The agency is asking for all of their cost and service use records from the Centers for Medicare & Medicaid Services.

Still, Hatton said, OPM’s latest notice provides more details about how the agency says it will use the sensitive health information it receives and safeguard it.

“It’s a big improvement over the last notice, which was very lacking in detail and explanation for why they wanted all the medical claims data and how they’re going to protect the privacy of the data,” Hatton said.

“We’d be open to seeing even more security around the privacy of the data so there really is a clear wall,” he added.

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

By the end of the month, she was in a hospital bed.

Hvatum, a part-time computer science professor, has a weakened immune system due to a rare condition known as primary immunodeficiency, which makes it difficult for her body to fight infections. Prior to her 2005 diagnosis, she had four bouts of shingles, a painful rash caused by a virus.

For more than a decade she relied on an expensive medicine to treat her chronic condition — and relied on her insurance to pay for it.

Then the denial letters came.

The Medical Service

To give her weakened immune system a boost, she relies on Hizentra, which is made up of antibodies collected from donated blood plasma.

At her home, near St. Louis, Hvatum can administer the complex medicine herself. She uses a large syringe to draw the medicine from a vial and loads the syringe into a plastic apparatus that looks like a toy Nerf gun. She cranks a blue plastic dial that triggers a steady drip of the medicine, and it snakes through plastic tubing until it enters her leg through a needle.

The Bill

$8,141.94: The full charges for a 28-day supply of Hizentra without insurance coverage.

After her Medicare Advantage plan through Humana denied payment for the drug in January, she missed several weekly doses.

The Billing Problem: Prior Authorization

Hvatum got tangled up in the controversial process known as prior authorization, which often requires patients or their medical team to get an insurance company’s approval before obtaining medicines or treatment. 

At the start of the year, after Hvatum switched Medicare Advantage plans, she received a letter saying that Humana, her new carrier, had denied her “prior authorization prescription request” for Hizentra. The authorization from her previous insurer didn’t carry over. 

Without the medicine, Hvatum developed a urinary tract infection that sent her to the emergency room on Jan. 30. Though it is a common infection, her doctor advised her to go there because people with her condition can get sick and deteriorate quickly, she said. 

That ER visit turned into an overnight hospital stay. That turned into hospital charges of more than $18,000, and again her insurance denied payment, saying this time that she wasn’t sick enough to require hospital care.

Hvatum’s experience with prior authorization is not unique.

Medicare Advantage plans reviewed nearly 53 million prior authorization requests in 2024, . That’s equivalent to nearly two reviews for every person enrolled in the program.

It’s common for Medicare Advantage plans to deny payment for care — which helps them make a profit, said Carrie Graham, director of the Medicare Policy Initiative at Georgetown University’s Center on Health Insurance Reforms.

The government pays a monthly sum to Medicare Advantage insurers to cover care for each member. “They make a profit if the care that person receives in that year is less than the amount they receive,” Graham said.

More than half of eligible Medicare beneficiaries choose Medicare Advantage insurance coverage. In 2026, roughly 35 million selected one of these private policies offered by insurance companies.

Humana is a dominant player in the space. Nearly half of all Medicare Advantage enrollees nationwide are covered by UnitedHealth Group or Humana, according to KFF.

The killing of UnitedHealthcare CEO Brian Thompson prompted renewed scrutiny of prior authorization. Last summer, months after his death, the nation’s largest insurers, including Humana, signed a pledge that outlined a handful of commitments to ease the burden on patients.

For example, insurers vowed to reduce the number of services that would require prior authorization approval. They also promised to reduce delays by honoring existing prior authorizations for a 90-day period when patients switched plans.

That’s not what happened in Hvatum’s case.

Humana said this pledge to honor existing approvals comes with limitations. “These commitments are for medical services only and do not apply to prescription medications,” spokesperson Mark Taylor said.  

Humana declined to comment on the specifics of Hvatum’s case, even though she agreed to waive her privacy rights, giving the insurer permission to comment.

While acknowledging that the prior authorization process can be deeply frustrating for patients, Humana said it “builds important checks and balances into the healthcare system by verifying that treatments and care delivery are in the best interest of patient safety and quality of care, while safeguarding taxpayer dollars.”

In July 2025, it would remove one-third of prior authorization requirements for outpatient services.

“We are committed to making the process faster and more seamless for patients and providers,” Humana said in a statement Taylor provided to Ñî¹óåú´«Ã½Ò•îl Health News.

The Resolution

Hvatum appealed, and Humana in late January reversed its initial payment denial for Hizentra, enabling her to afford her medicine again.

But the approval came with a catch: It expires at the end of the year, after which she would need to obtain approval all over again.

Hvatum has since switched to a different drug — and she might not stick around for any more medical-bill fights like this one. She and her husband are considering a move to Norway, a place with universal healthcare. He is a citizen there, which could give her a path to public health coverage.

The industry’s promises to change are too little, too late for Hvatum. 

By her account, she has done her part. Running is her outlet, maybe an obsession, and it keeps her healthy. Scores of medals and trophies are tucked about her home. Some sit on a white wicker end table, next to family photos, candles, and framed St. Louis Cardinals memorabilia. Above a large bay window in the kitchen, medals hang from ribbons of all colors, made to look almost like custom window drapery.

“I have done everything I possibly can to be healthy,” Hvatum said, sitting at her dining room table in her running gear. Her printed T-shirt read, “If found on ground, please drag across the finish line.”

The Takeaway

Data shows patients should appeal prior authorizations, because those who do often get their denials reversed, Graham said. In fact, 81% of Medicare Advantage appeals were partially or fully overturned in 2024, according to KFF.

Relatively few people appeal, because “it’s an exhausting process,” Graham said. It puts the onus on patients — and doctors get frustrated, too.

It’s not just Medicare Advantage plans that subject enrollees to prior authorization approvals. It’s prevalent in other types of coverage, and it has prompted blowback from the public. Graham believes the public outcry instigated the industry’s pledge to change.

Hvatum is well versed in filing appeals. She submitted another appeal to Humana after the insurer denied payment for her January hospital stay. Humana again reversed its denial of payment in her case.

Hvatum blames Humana for her January trip to the hospital. Had Humana approved her Hizentra, she said, she could have avoided hospital care altogether.

In March, she had a stroke. Humana denied coverage of that hospital stay, too.

Humana determined that it was not reasonable for the physician who admitted Hvatum to think she would need to stay at least two nights, the threshold for approval. “You had a small stroke,” Humana’s denial letter stated.

Hvatum noted the letter was dated March 25, two days after she was hospitalized. Humana reversed its denial two weeks after Hvatum appealed.

“They love to send you the denials fast,” Hvatum said. “Approvals take longer.”

Bill of the Month is a crowdsourced investigation by Ñî¹óåú´«Ã½Ò•îl Health News and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? !

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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 Ñî¹óåú´«Ã½Ò•îl 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 Ñî¹óåú´«Ã½Ò•îl 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 Ñî¹óåú´«Ã½Ò•îl Health News and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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 Ñî¹óåú´«Ã½Ò•îl 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 Ñî¹óåú´«Ã½Ò•îl 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 Ñî¹óåú´«Ã½Ò•îl 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 Ñî¹óåú´«Ã½Ò•îl 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 Ñî¹óåú´«Ã½Ò•îl 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 Ñî¹óåú´«Ã½Ò•îl Health News podcasts, click here.

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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 healthcare 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 as hospitals brace for about $1 trillion in cuts to federal healthcare spending prescribed by President Donald Trump’s 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 healthcare.

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.”

Healthcare 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. . The crowdsourced project is a joint production of NPR and Ñî¹óåú´«Ã½Ò•îl 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 starting the coverage. 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?

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .