In addition to the reimbursement issue, rural hospitals' complaints include payment delays and denials.

This article was published on Tuesday, April 8, 2025 in KFF Health News.

By Arielle Zionts

Rural hospital leaders are questioning whether they can continue to afford to do business with Medicare Advantage companies, and some say the only way to maintain services and protect patients is to end their contracts with the private insurers.

Medicare Advantage plans pay hospitals lower rates than traditional Medicare, said Jason Merkley, CEO of Brookings Health System in South Dakota. Merkley worried the losses would spark staff layoffs and cuts to patient services. So last year, Brookings Health dropped all four contracts it had with major Medicare Advantage companies.

"I've had lots of discussions with CEOs and executive teams across the country in regard to that," said Merkley, whose health system operates a hospital and clinics in the small city of Brookings and surrounding rural areas.

Merkley and other rural hospital operators in recent years have enumerated a long list of concerns about the publicly funded, privately run health plans. In addition to the reimbursement issue, their complaints include payment delays and a resistance to authorizing patient care.

But rural hospitals abandoning their Medicare Advantage contracts can leave local patients without nearby in-network providers or force them to scramble to switch coverage.

Medicare is the main federal health insurance program for people 65 or older. Participants can enroll in traditional, government-run Medicare or in a Medicare Advantage plan run by a private insurance company.

In 2024, 56% of urban Medicare recipients were enrolled in a private plan, according to a report by the Medicare Payment Advisory Commission, a federal agency that advises Congress. While just 47% of rural recipients enrolled in a private plan, Medicare Advantage has expanded more quickly in rural areas.

In recent years, average Medicare Advantage reimbursements to rural hospitals were about 90% of what traditional Medicare paid, according to a new report from the American Hospital Association. And traditional Medicare already pays hospitals much less than private plans, according to a recent study by Rand Corp., a research nonprofit.

Carrie Cochran-McClain, chief policy officer at the National Rural Health Association, said Medicare Advantage is particularly challenging for small rural facilities designated critical access hospitals. Traditional Medicare pays such hospitals extra, but the private insurance companies aren't required to do so.

"The vast majority of our rural hospitals are not in a position where they can take further cuts to payment," Cochran-McClain said. "There are so many that are just really in a precarious financial spot."

Nearly 200 rural hospitals have ended inpatient services or shuttered since 2005.

Mehmet Oz — doctor, former talk show host, and newly confirmed head of the Centers for Medicare & Medicaid Services — has promoted and worked for the private Medicare industry and called for "Medicare Advantage for all." But during his recent confirmation hearing, he called for more oversight as he acknowledged bipartisan concerns about the plans' cost to taxpayers and their effect on patients.

Cochran-McClain said some Republican lawmakers want to address these issues while supporting Medicare Advantage.

"But I don't think we've seen enough yet to really know what direction that's all going to take," she said.

Medicare Advantage plans can offer lower premiums and out-of-pocket costs for some participants. Nearly all offer extra benefits, such as vision, hearing, and dental coverage. Many also offer perks, such as gym memberships, nutrition services, and allowances for over-the-counter health supplies.

But a recent study in the Health Services Research journal found that rural patients on private plans struggled to access and afford care more often than rural enrollees on traditional Medicare and urban participants in both kinds of plans.

Susan Reilly, a spokesperson for the Better Medicare Alliance, said a recent report published by her group, which promotes Medicare Advantage, found that private plans are more affordable than traditional Medicare for rural beneficiaries. That analysis was conducted by an outside firm and based on a government survey of Medicare recipients.

Reilly also pointed to a study in The American Journal of Managed Care that found the growth of private plans in rural areas from 2008-2019 was associated with increased financial stability for hospitals and a reduced risk of closure.

Merkley said that's not what he's seeing on the ground in rural South Dakota.

He said traditional Medicare reimbursed Brookings Health System 91 cents for every dollar it spent on care in 2023, while Medicare Advantage plans paid 76 cents per dollar spent. He said his staff tried negotiating better contracts with the big Medicare Advantage companies, to no avail.

Patients who remain on private plans that no longer contract with their local hospitals and clinics may face higher prices unless they travel to in-network facilities, which in rural areas can be hours away. Merkley said most patients at Brookings Health switched to traditional Medicare or to regional Medicare Advantage plans that work better with the hospital system.

But switching from private to traditional Medicare can be unaffordable for patients.

That's because in most states, Medigap plans — supplemental plans that help people on traditional Medicare cover out-of-pocket costs — can deny coverage or base their prices on patients' medical history if they switch from a private plan.

Some rural health systems say they no longer work with any Medicare Advantage companies. They include Great Plains Health, which serves parts of rural Nebraska, Kansas, and Colorado, and Kimball Health Services, which is based in two small towns in Nebraska and Wyoming.

Medicare Advantage plans often limit the providers patients can see and require referrals and prior authorization for certain services. Requesting referrals, seeking preauthorization, and appealing denials can delay treatment for patients while adding extra work for doctors and billing staff.

"The unique rural lens on that is that rural providers really tend to be pretty bare-bone shops," Cochran-McClain said. "That kind of administrative burden pulls people away from really being able to focus on providing quality care to their beneficiaries."

Jonathon Green, CEO of Taylor Health Care Group in rural Georgia, said his system had to set up a team to deal solely with coverage denials, mostly from Medicare Advantage companies. He said some plans frequently decline to authorize payments before treatments, refuse to cover services they already approved, and deny payment for care that shouldn't need approval.

In these cases, Green said, the companies argue that the care wasn't appropriate for the patient.

"We hear that term constantly — ‘It's not medically necessary,'" he said. "That's the catchall for everything."

Green said Taylor Health Care Group has considered dropping its Medicare Advantage contracts but is keeping them for now.

Cochran-McClain said her group supports policy changes, such as a federal bill that aims to streamline prior authorization while requiring Medicare Advantage companies to share data about the process. The 2024 bill was co-sponsored by more than half of U.S. senators, but needs to be reintroduced this year.

Cochran-McClain said rural-health advocates also want the government to require private plans to pay critical access hospitals and similar rural facilities as much as they would receive from traditional Medicare.

Green and Merkley stressed that they aren't against the concept of private Medicare plans; they just want them to be fairer to rural facilities and patients.

Green said rural and independent hospitals don't have the leverage that urban hospitals and large chains do in negotiations with giant Medicare Advantage companies.

"We just don't have the ability to swing the pendulum enough," he said.

Arielle Zionts: azionts@kff.org, @Ajzionts

Survey data gathered by AHRQ provides much of what is known about hospitalizations for thousands of medical issues.

This article was published on Thursday, April 3, 2025 in KFF Health News.

By Arthur Allen

Sue Sheridan's baby boy, Cal, suffered brain damage from undetected jaundice in 1995. Helen Haskell's 15-year-old son, Lewis, died after surgery in 2000 because weekend hospital staffers didn't realize he was in shock. The episodes turned both women into advocates for patients and spurred research that made American health care safer.

On April 1, the Trump administration slashed the organization that supported that research — the Agency for Healthcare Research and Quality, or AHRQ — and fired roughly half of its remaining employees as part of a perplexing reorganization of the federal Health and Human Services Department.

Haskell, of Columbia, South Carolina, has done research and helped write AHRQ-published surveys and guidebooks on patient engagement for hospitals. The dissolution of AHRQ is dislodging scores of experienced patient-safety experts, a brain drain that will be impossible to rectify, she said.

Survey data gathered by AHRQ provides much of what is known about hospitalizations for motor accidents, measles, methamphetamine, and thousands of other medical issues.

"Nobody does these things except AHRQ," she said. "They're all we've got. And now the barn door's closed."

HHS Secretary Robert F. Kennedy Jr. posted on the social platform X on April 1 that layoffs at HHS, aimed at reducing the department's workforce by about 20,000 employees, were the result of alleged inefficacy. "What we've been doing isn't working," he said. "Despite spending $1.9 trillion in annual costs, Americans are getting sicker every year."

But neither Kennedy nor President Donald Trump have explained why individual agencies such as AHRQ were targeted for cuts or indicated whether any of their work would continue.

At their first meeting with the leadership of AHRQ last month, officials from Trump's Department of Government Efficiency said that they didn't know what the agency did — and that its budget would be cut by 80% to 90%, according to two people with knowledge of the meeting who were granted anonymity because of fears of retribution.

On March 28, the administration said AHRQ would merge with HHS' Office of the Assistant Secretary for Planning and Evaluation.

An AHRQ spokesperson, Rachel Seeger, said its acting chief, Mamatha Pancholi, was unavailable to answer questions.

Created on the foundation of an earlier agency in 1999, AHRQ has had two major functions: collecting survey data on U.S. health care expenditures, experiences, and outcomes; and funding research aimed at improving the safety and delivery of health care. It also has published tools and guidelines to enhance patient safety.

Its latest budget of $513 million amounts to about 0.04% of HHS spending.

"If you're going to spend $5 trillion a year on health care, it would be nice to know what the best use of that money is," said a senior AHRQ official who spoke on condition of anonymity for fear of losing his job. "To gut a 300-member, $500 million agency for no other reason than to placate a need to see blood seems really shortsighted."

Newly sworn-in FDA Commissioner Marty Makary, a surgeon who has advocated for patient safety, wrote or co-authored at least 10 research papers supported by AHRQ funding since 1998. AHRQ research and guidelines played a key role in lowering the incidence of hospital-acquired infections — such as deadly blood infections caused by contaminated IV lines, which fell 28% from 2015 to 2023, according to the Centers for Disease Control and Prevention.

Medical residents training in the 1980s were taught that such infections were an inevitable, often fatal byproduct of heart surgery, but AHRQ-funded research "showed that fairly simple checklists about preventing infections would be effective at going to zero," said Richard Kronick, a University of California-San Diego researcher who led AHRQ from 2013 to 2016.

Medical errors caused by missed diagnoses, drug errors, hospital infections, and other factors kill and maim tens of thousands of Americans each year. Makary published a controversial study in 2016 hypothesizing that errors killed 250,000 people a year in the U.S. — making medical mistakes the nation's third-leading cause of death.

"There are all kinds of terrible things about our health care system's outcomes and how we pay for it, the most expensive care in the world," Kronick said. "Without AHRQ, we'd be doing even worse."

AHRQ-funded researchers such as Hardeep Singh at Baylor College of Medicine have chipped away at patient safety risks for more than two decades. Singh devises ways to integrate technologies like telemedicine and artificial intelligence into electronic health records to alert doctors to potential prescribing errors or misdiagnoses.

Singh has 15 scholars and support staff members supported by three AHRQ grants worth about $1.5 million, he said. The elimination of the agency's office that funds outside researchers, among the cuts announced this week, is potentially "career-ending," he said. "We need safety research to protect our patients from harms in health care. No organization in the world does more for that than AHRQ."

Republicans have long been skeptical of AHRQ and the agency that preceded it. Some doctors saw it as meddling in their medical practices, while some GOP Congress members viewed it as duplicating the mission of the National Institutes of Health.

But when the Trump administration proposed merging it with NIH in 2018, a House-ordered study into health research priorities validated AHRQ's valuable role.

Now, the naysayers have triumphed.

Gordon Schiff, a Harvard Medical School internist who has received AHRQ funding since 2001, was among the first to learn about policy changes there when in February he got an email from the editors of an AHRQ patient-safety website informing him "regretfully" that a 2022 case study on suicide prevention he co-authored had been removed "due to a perception that it violates the White House policy on websites ‘that inculcate or promote gender ideology.'"

The article was not about gender issues. It briefly mentioned that LGBTQ men were at a higher risk for suicide than the general population. Schiff was offered the option of removing the LGBTQ reference but refused. He and Harvard colleague Celeste Royce have sued AHRQ, HHS, and the Office of Personnel Management over removal of the article.

"All we were doing was presenting evidence-based risk factors from the literature," he said. "To censor them would be a violation of scientific integrity and undermine the trustworthiness of these websites."

PSNet, the AHRQ publication where Schiff and Royce's article appeared, has been dissolved, although its website was still up as of April 2. Roughly half of AHRQ's 300 staffers resigned following the initial DOGE warning; 111 staff members were fired April 1, according to an email that a top executive, Jeffrey Toven, sent to employees and was shown to KFF Health News. AHRQ's remaining leadership was in the dark about Kennedy's plans, he said.

HHS spokespeople did not respond to requests for comment. Stephen Parente, a University of Minnesota finance professor who said he consults informally with Trump health officials, said much of AHRQ's work could be done by others. Its most vital services have been surveys that Westat, a private research company, performs for AHRQ on contract, said Parente, who was chief economist for health policy in the first Trump administration.

At the height of the covid pandemic, he said, data produced by AHRQ and other government sources were outclassed by private sources. To track covid, he relied on daily feeds of private insurance data from around the country.

Still, Parente said, the virtual disappearance of AHRQ means "we're going to lose a culture of research that is measured, thoughtful, and provides a channel for young investigators to make their marks."

A climate of deep depression has settled over the agency's Rockville, Maryland, headquarters, the unnamed AHRQ official said: "Almost everyone loves their job here. We're almost all PhDs in my center — a very collegial, talented group."

The official said he was "generally skeptical" that AHRQ's merger with the assistant secretary's office would keep its mission alive. The Centers for Medicare & Medicaid Services and the CDC conduct some health system quality research, but they are also losing staff, Harvard's Schiff noted.

One of Schiff's current AHRQ projects involved interviewing late-stage cancer patients to determine whether they could have been diagnosed earlier.

"The general public, I think, would like cancer to be diagnosed earlier, not when it's stage 4 or stage 3," he said. "There are things we could learn to improve our care and get more timely diagnosis of cancer."

"Medical errors and patient safety risks aren't going to go away on their own," he said.

With input from Sheridan and other mothers of children who suffered from jaundice-related brain damage, AHRQ launched research that led to a change in the standard of care whereby all newborns in the U.S. are tested for jaundice before discharge from hospitals. Cases of jaundice-related brain damage declined from 7 per 100,000 to about 2 per 100,000 newborns from 1997 to 2012.

The misfortune of Lewis, Haskell's son, led to a change in South Carolina law and later to a national requirement for hospitals to enable patients to demand emergency responses under certain circumstances.

Singh, a leading researcher on AI in health care, sees bitter irony in the way the Elon Musk-led DOGE has taken an ax to AHRQ, which recently put out a new request for proposals to study the technology. "Some think AI will fix health care without a human in the loop," Singh said. "I doubt we get there by dismantling people who support or perform patient safety research. You need a human in the loop."

Arthur Allen: aallen@kff.org, @ArthurAllen202

Trump's 2025 order shows how little progress the country has made since he issued a similar directive nearly six years ago.

This article was published on Wednesday, April 2, 2025 in KFF Health News.

By Daniel Chang

It's a holy grail of health care: forcing the industry to reveal prices negotiated between health plans and hospitals — information that had long been treated as a trade secret. And among the flurry of executive orders President Donald Trump signed during his first five weeks back in office was a promise to "Make America Healthy Again" by giving patients accurate health care prices.

The goal is to force hospitals and health insurance companies to make it easier for consumers to compare the actual prices of medical procedures and prescription drugs. Trump gave his administration until the end of May to come up with a standard and a mechanism to make sure the health care industry complies.

But Trump's 2025 order is also a symbol of how little progress the country has made since he issued a similar directive nearly six years ago. Consumers find it only partially useful, and the quality of the information is spotty.

A ‘Bold' First Step That Fizzled

The 2019 order was "pretty bold," said Gary Claxton, a senior vice president at KFF, a health information nonprofit that includes KFF Health News. "They basically went at the providers and the plans and said, ‘All this data you think is confidential we're not going to make confidential anymore.'"

What followed was, to consumer advocacy groups, a disappointment. Hospitals and insurers posted on websites voluminous, complex, and confusing data about their prices. The information has been a challenge for even experts in health care pricing to navigate, let alone consumers. Some members of Congress filed legislation to put the force of law behind price transparency requirements; those bills died. And President Joe Biden's administration was criticized for not more stringently enforcing the regulations, with one consumer advocacy group even buying a Super Bowl ad featuring the rapper Fat Joe alleging that "hospitals and insurers hide their prices."

Trump's new order, signed in February, said that hospitals and health plans "were not adequately held to account when their price transparency data was incomplete or not even posted at all."

The Government Accountability Office reported in October that the Centers for Medicare & Medicaid Services didn't know whether prices reported by the health care industry were correct or complete. But CMS, which regulates hospitals, now plans to "systematically monitor compliance" and help institutions understand the requirements, said Catherine Howden, an agency spokesperson.

Howden did not answer questions about whether CMS staffers overseeing price transparency compliance have been fired as part of the Trump administration's wide-ranging effort to cut the federal workforce.

'Zombie' Rates and Other Inconsistencies

Meanwhile, independent researchers have found numerous problems with the quality of price data both hospitals and health insurers do share with consumers.

A recent report from the Peterson-KFF Health System Tracker found that data reported by four health insurers in New York City often included prices that they say they pay hospitals for services that those health providers don't — or can't — provide. These are called "ghost" or "zombie" rates. For example, the health plans reported dentists, optometrists, and audiologists receiving payments for knee replacements, gastrointestinal exams, and other procedures unrelated to their specialties.

In other cases, the data included different prices for the same service paid for by the same insurer at the same hospital. UnitedHealthcare, for example, reported paying New York-Presbyterian/Weill Cornell Medical Center three rates — $47,000, $64,000, and $70,000 — to treat a heart attack.

Or, the insurers reported paying the same price for vastly different services. Aetna, for example, said it paid exactly $6,292 to Mount Sinai Beth Israel hospital for the treatment of respiratory infections, heart attacks, cancers of the digestive tract, kidney and urinary tract infections, and psychosis.

Neither UnitedHealthcare nor Aetna addressed the discrepancies in the data. Cole Manbeck, a spokesperson for UnitedHealthcare, said the insurer has met price transparency requirements and urged members "to use our cost-estimator tools for exact costs based on their specific health plan." Aetna spokesperson Shelly Bendit referred questions to AHIP, a lobbying and trade association for insurers.

Health insurers have "strongly supported" price transparency, said Chris Bond, a spokesperson for AHIP. The group will work with the Trump administration to provide transparency "in a way that is meaningful for the end user, while also promoting a competitive private market," Bond said.

What's a Consumer To Do?

Estimates and total prices aren't very useful for consumers, who are mainly interested in what they'll ultimately have to pay out-of-pocket, said David Cutler, a professor of applied economics at Harvard University. That can vary by health plan, depending on deductibles, copayments, and other fees.

"Most of the price transparency information doesn't have that," he said.

It also doesn't give consumers information about the quality of care, Cutler added, which can lead to an old bias. "It's kind of like wine when you go to the restaurant," he said. "People assume that the more expensive wine is better."

Cutler said he's skeptical that price transparency will lower costs for patients. But he said it may offer insight to hospitals and health plans about what their competitors are charging and paying for services — knowledge that could inadvertently lead to price increases if hospitals that receive a lower rate than a competitor demand higher reimbursement from health plans.

Trump's recent executive order notes that the top quarter of the most expensive health service prices have dropped by 6.3% a year since his 2019 order.

However, the same research referenced in the executive order showed that the bottom quarter of services got more expensive, at a rate of about 3.4% per year, according to the analysis by Turquoise Health, a health care price data firm that examined rates at more than 200 hospitals in the 10 largest U.S. markets.

Some patients say that with research and persistence, they've been able to make price transparency work for them.

Theresa Schmotzer, 50, of Goodyear, Arizona, said she used hospital price data to save nearly $3,000 on outpatient surgery to have a fibroid removed last year.

Schmotzer, who has health insurance, said the hospital first told her she would owe $3,700 for the procedure and wanted the payment upfront. But she was skeptical.

She said her health insurer was unable to quote a price for the procedure or specify how much she would owe. The morning of the surgery, Schmotzer said, she found a spreadsheet online at PatientRightsAdvocate.org that included different prices paid by insurers, including hers. The reported price for the procedure was closer to $700, she said.

Schmotzer said she took a printout of the spreadsheet to the hospital and presented it during preadmission. She paid her $300 deductible and told the hospital to bill her for the rest.

A few months later, she said, the bill arrived in the mail for the remaining $400, which she paid.

When people go for surgery and aren't clear upfront what the cost will be, it stokes fear, she said. "Because they're going in blind."

Next Steps

Hospitals say they want to work with federal regulators and comply with reporting requirements, said Ariel Levin, director of coverage policy for the American Hospital Association, which represents about 5,000 institutions. Levin said consumers should be given the price of services and "a more comprehensive estimate" that represents an entire episode of care and the amount they'll owe out-of-pocket, based on their health plan.

CMS has developed rules since Trump's 2019 order to make price information reported by hospitals and health plans easier to understand, and the agency has fined more than a dozen hospitals for failing to comply.

Federal rules allow hospitals to report an estimate, a price range, or a historical rate for their services, while health plans can adjust prices based on factors like the severity of the case, the length of treatment, and a patient's age.

KFF's Claxton said that such flexibility doesn't allow for "apples-to-apples comparisons" and that the data must be reliable before researchers can use it to better understand health care costs. "It doesn't seem to be that yet," he said.

Much remains to be done before price transparency lives up to expectations that it will increase competition and lower costs, said Katie Martin, chief executive of the Health Care Cost Institute, a nonprofit research group.

Price transparency alone is not a silver bullet, Martin said. It's "a critical first step" for employers, lawmakers, regulators, and others to better understand how money flows through the health care system and how to make it more efficient, she said. "It's not the whole thing."

Daniel Chang: dchang@kff.org, @dchangmiami

Republicans and Democrats agree prior authorization needs fixing, but patients are growing impatient.

This article was published on Monday, March 31, 2025 in KFF Health News.

By Lauren Sausser

HENRICO, Va. — Sheldon Ekirch spends a lot of time on hold with her health insurance company.

Sometimes, as the minutes tick by and her frustration mounts, Ekirch, 30, opens a meditation app on her phone. It was recommended by her psychologist to help with the depression associated with a stressful and painful medical disorder.

In 2023, Ekirch was diagnosed with small fiber neuropathy, a condition that makes her limbs and muscles feel as if they're on fire. Now she takes more than a dozen prescriptions to manage chronic pain and other symptoms, including insomnia.

"I don't feel like I am the person I was a year and a half ago," said Ekirch, who was on the cusp of launching her law career, before getting sick. "Like, my body isn't my own."

Ekirch said specialists have suggested that a series of infusions made from blood plasma called intravenous immunoglobulin — IVIG, for short — could ease, or potentially eradicate, her near-constant pain. But Ekirch's insurance company has repeatedly denied coverage for the treatment, according to documents provided by the patient.

Patients with Ekirch's condition don't always respond to IVIG, but she said she deserves to try it, even though it could cost more than $100,000.

"I'm paying a lot of money for health insurance," said Ekirch, who pays more than $600 a month in premiums. "I don't understand why they won't help me, why my life means so little to them."

For patient advocates and health economists, cases like Ekirch's illustrate why prior authorization has become such a chronic pain point for patients and doctors. For 50 years, insurers have employed prior authorization, they say, to reduce wasteful health care spending, prevent unnecessary treatment, and guard against potential harm.

The practice differs by insurance company and plan, but the rules often require patients or their doctors to request permission from the patient's health insurance company before proceeding with a drug, treatment, or medical procedure.

The insurance industry provides little information about how often prior authorization is used. Transparency requirements established by the federal government to shed light on the use of prior authorization by private insurers haven't been broadly enforced, said Justin Lo, a senior researcher for the Program on Patient and Consumer Protections at KFF, a health information nonprofit that includes KFF Health News.

Yet it's widely acknowledged that prior authorization tends to disproportionately impact some of the sickest people who need the most expensive care. And despite bipartisan support to reform the system, as well as recent attempts by health insurance companies to ease the burden for patients and doctors, some tactics have met skepticism.

Some insurers' efforts to improve prior authorization practices aren't as helpful as they would seem, said Judson Ivy, CEO of Ensemble Health Partners, a revenue cycle management company.

"When you really dive deep," he said, these improvements don't seem to touch the services and procedures, such as CT scans, that get caught up in prior authorization so frequently. "When we started looking into it," he said, "it was almost a PR stunt."

The ‘Tipping Point'

When Arman Shahriar's father was diagnosed with follicular lymphoma in 2023, his father's oncologist ordered a whole-body PET scan to determine the cancer's stage. The scan was denied by a company called EviCore by Evernorth, a Cigna subsidiary that makes prior authorization decisions.

Shahriar, an internal medicine resident, said he spent hours on the phone with his father's insurer, arguing that the latest medical guidelines supported the scan. The imaging request was eventually approved. But his father's scan was delayed several weeks — and multiple appointments were scheduled, then canceled during the time-consuming process — while the family feared the cancer would continue to spread.

EviCore by Evernorth spokesperson Madeline Ziomek wrote in an emailed statement that incomplete clinical information provided by physicians is a leading cause of such denials. The company is "actively developing new ways to make the submission process simpler and faster for physicians," Ziomek said.

In the meantime, Shahriar, who often struggles to navigate prior authorization for his patients, accused the confusing system of "artificially creating problems in people's lives" at the wrong time.

"If families with physicians are struggling through this, how do other people navigate it? And the short answer is, they can't," said Shahriar, who wrote about his father's case in an essay published last year by JAMA Oncology. "We're kind of reaching a tipping point where we're realizing, collectively, something needs to be done."

The fatal shooting of UnitedHealthcare CEO Brian Thompson on a New York City sidewalk in December prompted an outpouring of grief among those who knew him, but it also became a platform for public outrage about the methods insurance companies use to deny treatment.

An Emerson College poll conducted in mid-December found 41% of 18- to 29-year-olds thought the actions of Thompson's killer were at least somewhat acceptable. In a NORC survey from the University of Chicago conducted in December, two-thirds of respondents indicated that insurance company profits, and their denials for health care coverage, contributed "a great deal/moderate amount" to the killing. Instagram accounts established in support of Luigi Mangione, the 26-year-old Maryland suspect accused of murder and terrorism, have attracted thousands of followers.

"The past several weeks have further challenged us to even more intensely listen to the public narrative about our industry," Cigna Group CEO David Cordani said during an earnings call on Jan. 30. Cigna is focused on "making prior authorizations faster and simpler," he added.

The first Trump administration and the Biden administration put forth policies designed to improve prior authorization for some patients by mandating that insurers set up electronic systems and shortening the time companies may take to issue decisions, among other fixes. Hundreds of House Democrats and Republicans signed on to co-sponsor a bill last year that would establish new prior authorization rules for Medicare Advantage plans. In January, Republican congressman Jefferson Van Drew of New Jersey introduced a federal bill to abolish the use of prior authorization altogether.

Meanwhile, many states have passed legislation to regulate the use of prior authorization. Some laws require insurers to publish data about prior authorization denials with the intention of making a confusing system more transparent. Reform bills are under consideration by state legislatures in Hawaii, Montana, and elsewhere. A bill in Virginia approved by the governor March 18 takes effect July 1. Other states, including Texas, have established "gold card" programs that ease prior authorization requirements for some physicians by allowing doctors with a track record of approvals to bypass the rules.

No one from AHIP, an insurance industry lobbying group formerly known as America's Health Insurance Plans, was available to be interviewed on the record about proposed prior authorization legislation for this article.

But changes wouldn't guarantee that the most vulnerable patients would be spared from future insurance denials or the complex appeals process set up by insurers. Some doctors and advocates for patients are skeptical that prior authorization can be fixed as long as insurers are accountable to shareholders.

Kindyl Boyer, director of advocacy for the nonprofit Infusion Access Foundation, remains hopeful the system can be improved but likened some efforts to playing "Whac-A-Mole." Ultimately, insurance companies are "going to find a different way to make more money," she said.

‘Unified Anger'

In the weeks following Thompson's killing, UnitedHealthcare was trying to refute an onslaught of what it called "highly inaccurate and grossly misleading information" about its practices when another incident landed the company back in the spotlight.

On Jan. 7, Elisabeth Potter, a breast reconstruction surgeon in Austin, Texas, posted a video on social media criticizing the company for questioning whether one of her patients who had been diagnosed with breast cancer and was undergoing surgery that day needed to be admitted as an inpatient.

The video amassed millions of views.

In the days following her post, UnitedHealthcare hired a high-profile law firm to demand a correction and public apology from Potter. In an interview with KFF Health News, Potter would not discuss details about the dispute, but she stood by what she said in her original video.

"I told the truth," Potter said.

The facts of the incident remain in dispute. But the level of attention it received online illustrates how frustrated and vocal many people have become about insurance company tactics since Thompson's killing, said Matthew Zachary, a former cancer patient and the host of "Out of Patients," a podcast that aims to amplify the experiences of patients.

For years, doctors and patients have taken to social media to shame health insurers into approving treatment. But in recent months, Zachary said, "horror stories" about prior authorization shared widely online have created "unified anger."

"Most people thought they were alone in the victimization," Zachary said. "Now they know they're not."

Data published in January by KFF found that prior authorization is particularly burdensome for patients covered by Medicare Advantage plans. In 2023, virtually all Medicare Advantage enrollees were covered by plans that required prior authorization, while people enrolled in traditional Medicare were much less likely to encounter it, said Jeannie Fuglesten Biniek, an associate director at KFF's Program on Medicare Policy. Furthermore, she said, Medicare Advantage enrollees were more likely to face prior authorization for higher-cost services, including inpatient hospital stays, skilled nursing facility stays, and chemotherapy.

But Neil Parikh, national chief medical officer for medical management at UnitedHealthcare, explained prior authorization rules apply to fewer than 2% of the claims the company pays. He added that "99% of the time" UnitedHealthcare members don't need prior authorization or requests are approved "very, very quickly."

Recently, he said, a team at UnitedHealthcare was reviewing a prior authorization request for an orthopedic procedure when they discovered the surgeon planned to operate on the wrong side of the patient's body. UnitedHealthcare caught the mistake in time, he recounted.

"This is a real-life example of why prior authorization can really help," Parikh said.

Even so, he said, UnitedHealthcare aims to make the process less burdensome by removing prior authorization requirements for some services, rendering instant decisions for certain requests, and establishing a national gold card program, among other refinements. Cigna also announced changes designed to improve prior authorization in the months since Thompson's killing.

"Brian was an incredible friend and colleague to many, many of us, and we are deeply saddened by his passing," Parikh said. "It's truly a sad occasion."

The Final Denial

During the summer of 2023, Ekirch was working full time and preparing to take the bar exam when she noticed numbness and tingling in her arms and legs. Eventually, she started experiencing a burning sensation throughout her body.

That fall, a Richmond-area neurologist said her symptoms were consistent with small fiber neuropathy, and, in early 2024, a rheumatologist recommended IVIG to ease her pain. Since then, other specialists, including neurologists at the University of Virginia and Virginia Commonwealth University, have said she may benefit from the same treatment.

There's no guarantee it will work. A randomized controlled trial published in 2021 found pain levels in patients who received IVIG weren't significantly different from the placebo group, while an older study found patients responded "remarkably well."

"It's hard because I look at my peers from law school and high school — they're having families, excelling in their career, living their life. And most days I am just struggling, just to get out of bed," said Ekirch, frustrated that Anthem continues to deny her claim.

In a prepared statement, Kersha Cartwright, a spokesperson for Anthem's parent company, Elevance Health, said Ekirch's request for IVIG treatment was denied "because it did not meet the established medical criteria for effectiveness in treating small fiber neuropathy."

On Feb. 17, her treatment was denied by Anthem for the final time. Ekirch said her patient advocate, a nurse who works for Anthem, suggested she reach out to the drug manufacturer about patient charity programs.

"This is absolutely crazy," Ekirch said. "This is someone from Anthem telling me to plead with a pharmacy company to give me this drug when Anthem should be covering it."

Her only hope now lies with the Virginia State Corporation Commission Bureau of Insurance, a state agency that resolves prior authorization disputes between patients and health insurance companies. She found out through a Facebook group for patients with small fiber neuropathy that the Bureau of Insurance has overturned an IVIG denial before. In late March, Ekirch was anxiously waiting to hear the agency's decision about her case.

"I don't want to get my hopes up too much, though," she said. "I feel like this entire process, I've been let down by it."

Lauren Sausser: lsausser@kff.org, @laurenmsausser