'Not Accountable to Anyone': As Insurers Issue Denials, Some Patients Run Out of Options

By LAUREN SAUSSER, KFF Health News

BRIDGEPORT, W.Va. — By the time Eric Tennant was diagnosed in 2023 with a rare

cancer of the bile ducts, the disease had spread to his bones. He weighed 97 pounds and

wasn't expected to survive a year with stage 4 cancer.

Two years later, grueling rounds of chemotherapy have slowed the cancer's progress,

even as it has continued to spread. But chemotherapy has also ravaged Tennant's body

and his quality of life.

Recently, however, the 58-year-old had reason to hope things would improve. Last fall,

his wife, Rebecca, learned of a relatively new, noninvasive procedure called histotripsy,

which uses targeted ultrasound waves to destroy tumors in the liver. The treatment

could extend his life and buy him more downtime between rounds of chemotherapy.

Early this year, Tennant's oncologist agreed he was a good candidate since the largest

tumor in his body is in his liver. But that's when his family began fighting another

adversary: their health insurer, which decided the treatment was "not medically

necessary," according to insurance paperwork.

Health insurers issue millions of denials every year. And like the Tennants, many

patients find themselves stuck in a convoluted appeals process marked by long wait

times, frustrating customer service encounters, and decisions by medical professionals

they've never met who may lack relevant training.

Recent federal and state efforts, as well as changes undertaken by insurance companies

themselves, have attempted to improve a 50-year-old system that disproportionately

burdens some of the sickest patients at the worst times. And yet many doctors complain

that insurance denials are worse than ever as the use of prior authorization has ramped

up in recent years, reporting by KFF Health News and NBC News found.

When the Tennant family was told histotripsy would cost $50,000 and insurance

wouldn't cover it, they appealed the denial four times.

"It's a big mess," said Rebecca Tennant, who described feeling like a pingpong ball,

bouncing between the insurer and various health care companies involved in the

appeals process.

"There's literally nothing we can do to get them to change," she said in an April

interview with KFF Health News. "They're, like, not accountable to anyone."

While the killing of UnitedHealthcare chief executive Brian Thompson in December

incited a fresh wave of public fury about denials, there is almost no hope of meaningful

change on the horizon, said Jay Pickern, an assistant professor of health services

administration at Auburn University.

"You would think the murder of a major health insurance CEO on the streets of New

York in broad daylight would be a major watershed moment," Pickern said. Yet, once

the news cycle died down, "everything went back to the status quo."

An Unintended Consequence of Health Reform?

Prior authorization varies by plan but often requires patients or their providers to get

permission (also called precertification, preauthorization, or preapproval) before filling

prescriptions, scheduling imaging, surgery, or an inpatient hospital stay, among other

expenses.

The practice isn't new. Insurers have used prior authorization for decades to limit fraud,

prevent patient harm, and control costs. In some cases, it is used to intentionally

generate profits for health insurers, according to a 2024 U.S. Senate report. By denying

costly care, companies pay less for health care expenses while still collecting premiums.

"At the end of the day, they're a business and they exist to make money," said Pickern,

who wrote about the negative impacts of prior authorization on patient care for The

American Journal of Managed Care.

For most patients, though, the process works seamlessly. Prior authorization mostly

happens behind the scenes, almost always electronically, and nearly all requests are

quickly, or even instantly, approved.

But the use of prior authorization has also increased in recent years. That's partly due to

the growth of enrollment in Medicare Advantage plans, which rely heavily on prior

authorization compared with original Medicare. Some health policy experts also point to

the passage of the Affordable Care Act in 2010, which prohibited health insurers from

denying coverage to patients with preexisting conditions, prompting companies to find

other ways to control costs.

"But we can't really prove this," said Kaye Pestaina, director of the Program on Patient

and Consumer Protection at KFF, a health information nonprofit that includes KFF

Health News. Health insurers haven't been historically transparent about which services

require prior authorization, she said, making it difficult to draw comparisons before and

after the passage of the Affordable Care Act.

Meanwhile, many states are looking to overhaul the prior authorization process.

In March, Virginia passed a law that will require health insurers to publicly post a list of

health care services and codes for which prior authorization is required. A North

Carolina bill would require doctors who review patient appeals to have practiced

medicine in the same specialty as the patient's provider. The West Virginia Legislature

passed bills in both 2019 and 2023 requiring insurers to respond to nonurgent

authorization requests within five days and more urgent requests within two days,

among other mandates.

And in 2014, the South Carolina Department of Health and Human Services temporarily

lifted all prior authorization requirements for Medicaid beneficiaries seeking

rehabilitative behavioral health services.

Federal rules to modify prior authorization that were introduced by the first Trump

administration and finalized by the Biden administration are set to take effect next year,

with the aim of streamlining the process, reducing wait times, and improving

transparency.

These changes were supported by AHIP, a trade group that represents health insurers.

'Sick With Little Recourse'

But the new federal rules won't prevent insurance companies from denying payment for

doctor-recommended treatment, and they apply only to some categories of health

insurance, including Medicare Advantage and Medicaid. Nearly half the U.S. population

is covered by employer-sponsored plans, which remain untouched by the new rules.

For some patients, the stakes couldn't be higher.

On May 12, Alexander Schrift, 35, died at home in San Antonio, Florida, less than two

months after his insurance company refused to cover the cancer drug ribociclib. It's

used to treat breast cancer but has shown promise in treating the same type of brain

tumor Schrift was diagnosed with in 2022, according to researchers at the Dana-Farber

Cancer Institute in Boston and the Institute of Cancer Research in London.

But Schrift's insurance company refused to pay. The Right to Try Act, signed by

President Donald Trump in 2018, entitles patients with terminal illnesses to try

experimental drugs, but it does not obligate insurance companies to pay for them.

In May, Sheldon Ekirch, 30, of Henrico, Virginia, said her parents withdrew money

from their retirement savings to pay for treatment denied by her health insurance

company.

Ekirch, who was diagnosed with small fiber neuropathy in 2023, was recommended by

her doctor to try an expensive blood plasma treatment called intravenous

immunoglobulin to ease her near-constant pain. In April, a state agency charged with

reviewing insurance denials upheld her insurer's decision. Out-of-pocket, the treatment

may cost her parents tens of thousands of dollars.

"Never in a million years did I think I'd end up here," Ekirch said, "sick with little

recourse."

Earlier this year, New Jersey congressman Jefferson Van Drew, a Republican,

introduced a bill that would eliminate prior authorization altogether. But history

suggests that would create new problems.

When South Carolina Medicaid lifted prior authorization for rehabilitative behavioral

health services in 2014, the department's costs for those services skyrocketed from

$300,000 to $2 million per week, creating a $54 million budget shortfall after new

providers flooded the market. Some providers were eventually referred to the South

Carolina Attorney General's Office for Medicaid fraud investigation. The state Medicaid

agency eventually reinstated prior authorization for specific services, spokesperson Jeff

Leieritz said.

What happened in South Carolina illustrates a common argument made by insurers:

Prior authorization prevents fraud, reduces overspending, and guards against potential

harm to patients.

On the other hand, many doctors and patients claim that cost-containment strategies,

including prior authorization, do more harm than good.

On Feb. 3, 2024, Jeff Hall of Estero, Florida, became paralyzed from the neck down and

spent weeks in a coma after he suddenly developed Guillain-Barré Syndrome. The cause

of his illness remains unknown.

Hall, now 51, argued that the Florida Blue health insurance plan he purchased on the

federal marketplace hindered his recovery by capping the number of days he was

allowed to remain in an acute rehabilitation hospital last year.

Hall said that after he was forced to "step down" to a lower-level nursing facility, his

health deteriorated so rapidly within six days that he was sent to the emergency room,

placed on a ventilator, and required a second tracheostomy. Hall believes the insurance

company's coverage limits set his recovery back by months — and, ironically, cost the

insurer more. His wife, Julie, estimated Jeff's medical bills have exceeded $5 million,

and most of his care has been covered by his insurer.

"Getting better is not always the goal of an insurance company. It's a business," Jeff Hall

said. "They don't care."

In a prepared statement, Florida Blue spokesperson Jose Cano said the company

understands "it can be a challenge when a member reaches the limit of their coverage

for a specific service or treatment." He encouraged members affected by coverage limits

to contact their health care providers to "explore service and treatment options."

A 'Rare and Exceptional' Reversal

Back in West Virginia, Eric and Rebecca Tennant say they are realistic about Eric's

prognosis.

They never expected histotripsy to cure his cancer. At best, the procedure could buy him

more time and might allow him to take an extended break from chemotherapy. That

makes it worth trying, they said.

As a safety instructor with the West Virginia Office of Miners' Health Safety and

Training, Eric Tennant is a state employee and is insured by West Virginia's Public

Employees Insurance Agency.

As the Tennants pleaded with the state insurance agency to cover histotripsy, they faced

a list of other companies involved in the decision, including UMR, a UnitedHealthcare

subsidiary that contracts with West Virginia to manage the public employee plans, and

MES Peer Review Services, a Massachusetts company that upheld the insurer's decision

in March, citing that histotripsy is "unproven in this case and is not medically

necessary."

None of their appeals worked. After KFF Health News and NBC News reached out to

West Virginia's Public Employees Insurance Agency with questions for this article, the

agency changed its mind, explaining the insurer had consulted with medical experts to

further evaluate the case.

"This decision reflects a rare and exceptional situation" and does not represent a change

in the Public Employees Insurance Agency's overall coverage policies," Director Brent

Wolfingbarger said in a prepared statement to KFF Health News.

In a separate prepared statement, UnitedHealthcare spokesperson Eric Hausman said

the company sympathizes with "anyone navigating through life-threatening care

decisions."

"Currently, there is no evidence that histotripsy is as effective as alternative treatment

options available," he said in late May, after the earlier insurance denials were reversed,

"and its impact on survival or cancer recurrence is unknown."

MES Peer Review Services did not respond to a request for an interview.

Meanwhile, Rebecca Tennant worries it might be too late. She said her husband was

first evaluated for histotripsy in February. But his health has recently taken a turn for

the worse. In late May and early June, she said, he spent five days in the hospital after

developing heart and lung complications.

Eric Tennant is no longer considered a viable candidate for histotripsy, his wife said,

although the Tennants are hopeful that will change if his health improves. Scans

scheduled for July will determine whether his cancer has continued to progress.

Rebecca Tennant blames her husband's insurance plan for wasting months of their time.

"Time is precious," she said. "They know he has stage 4 cancer, and it's almost like they

don't care if he lives or dies."

NBC News health and medical unit producer Jason Kane and correspondent Erin

McLaughlin contributed to this report.