Lauren Sausser
BRIDGEPORT, W.Va. — By the time Eric Tennant was recognized in 2023 with a uncommon most cancers of the bile ducts, the illness had unfold to his bones. He weighed 97 kilos and wasn’t anticipated to outlive a yr with stage 4 most cancers.
Two years later, grueling rounds of chemotherapy have slowed the most cancers’s progress, even because it has continued to unfold. But chemotherapy has additionally ravaged Tennant’s physique and his high quality of life.
Recently, nevertheless, the 58-year-old had motive to hope issues would enhance. Last fall, his spouse, Rebecca, realized of a comparatively new, noninvasive process referred to as histotripsy, which makes use of focused ultrasound waves to destroy tumors within the liver. The remedy might prolong his life and purchase him extra downtime between rounds of chemotherapy.
Early this yr, Tennant’s oncologist agreed he was a great candidate for the reason that largest tumor in his physique is in his liver. But that’s when his household started preventing one other adversary: their well being insurer, which determined the remedy was “not medically necessary,” in accordance with insurance coverage paperwork.
Health insurers difficulty tens of millions of denials yearly. And just like the Tennants, many sufferers discover themselves caught in a convoluted appeals course of marked by lengthy wait instances, irritating customer support encounters, and choices by medical professionals they’ve by no means met who might lack related coaching.
Recent federal and state efforts, in addition to modifications undertaken by insurance coverage firms themselves, have tried to enhance a 50-year-old system that disproportionately burdens among the sickest sufferers on the worst instances. And but many docs complain that insurance coverage denials are worse than ever as using prior authorization has ramped up lately, reporting by KFF Health News and NBC News discovered.
When the Tennant household was instructed histotripsy would price $50,000 and insurance coverage wouldn’t cowl it, they appealed the denial 4 instances.
“It’s a big mess,” mentioned Rebecca Tennant, who described feeling like a pingpong ball, bouncing between the insurer and varied well being care firms concerned within the appeals course of.
“There’s literally nothing we can do to get them to change,” she mentioned 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 contemporary wave of public fury about denials, there’s virtually no hope of significant change on the horizon, mentioned Jay Pickern, an assistant professor of well being companies 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 mentioned. Yet, as soon as the information cycle died down, “everything went back to the status quo.”
An Unintended Consequence of Health Reform?
Prior authorization varies by plan however typically requires sufferers or their suppliers to get permission (additionally referred to as precertification, preauthorization, or preapproval) earlier than filling prescriptions, scheduling imaging, surgical procedure, or an inpatient hospital keep, amongst different bills.
The apply isn’t new. Insurers have used prior authorization for many years to restrict fraud, stop affected person hurt, and management prices. In some circumstances, it’s used to deliberately generate earnings for well being insurers, in accordance with a 2024 U.S. Senate report. By denying pricey care, firms pay much less for well being care bills whereas nonetheless gathering premiums.
“At the end of the day, they’re a business and they exist to make money,” mentioned Pickern, who wrote about the negative impacts of prior authorization on affected person look after The American Journal of Managed Care.
For most sufferers, although, the method works seamlessly. Prior authorization principally occurs behind the scenes, virtually at all times electronically, and almost all requests are rapidly, and even immediately, authorised.
But using prior authorization has additionally elevated lately. That’s partly as a result of progress of enrollment in Medicare Advantage plans, which rely heavily on prior authorization in contrast with unique Medicare. Some well being coverage consultants additionally level to the passage of the Affordable Care Act in 2010, which prohibited well being insurers from denying protection to sufferers with preexisting circumstances, prompting firms to search out different methods to regulate prices.
“But we can’t really prove this,” mentioned Kaye Pestaina, director of the Program on Patient and Consumer Protection at KFF, a well being data nonprofit that features KFF Health News. Health insurers haven’t been traditionally clear about which companies require prior authorization, she mentioned, making it tough to attract comparisons earlier than and after the passage of the Affordable Care Act.
Meanwhile, many states need to overhaul the prior authorization course of.
In March, Virginia passed a law that may require well being insurers to publicly submit an inventory of well being care companies and codes for which prior authorization is required. A North Carolina invoice would require docs who evaluation affected person appeals to have practiced drugs in the identical specialty because the affected person’s supplier. The West Virginia Legislature handed payments in each 2019 and 2023 requiring insurers to reply to nonurgent authorization requests inside 5 days and extra pressing requests inside two days, amongst different mandates.
And in 2014, the South Carolina Department of Health and Human Services quickly lifted all prior authorization necessities for Medicaid beneficiaries searching for rehabilitative behavioral well being companies.
Federal guidelines to switch prior authorization that have been launched by the primary Trump administration and finalized by the Biden administration are set to take impact subsequent yr, with the purpose of streamlining the method, lowering wait instances, and enhancing transparency.
These modifications have been supported by AHIP, a commerce group that represents well being insurers.
‘Sick With Little Recourse’
But the brand new federal guidelines gained’t stop insurance coverage firms from denying fee for doctor-recommended remedy, and so they apply solely to some classes of medical insurance, together with Medicare Advantage and Medicaid. Nearly half the U.S. inhabitants is roofed by employer-sponsored plans, which stay untouched by the brand new guidelines.
For some sufferers, the stakes couldn’t be increased.
On May 12, Alexander Schrift, 35, died at house in San Antonio, Florida, lower than two months after his insurance coverage firm refused to cowl the most cancers drug ribociclib. It’s used to deal with breast most cancers however has shown promise in treating the identical sort of mind tumor Schrift was recognized with in 2022, in accordance with researchers on the Dana-Farber Cancer Institute in Boston and the Institute of Cancer Research in London.
But Schrift’s insurance coverage firm refused to pay. The Right to Try Act, signed by President Donald Trump in 2018, entitles sufferers with terminal diseases to strive experimental medicine, nevertheless it doesn’t obligate insurance coverage firms to pay for them.
In May, Sheldon Ekirch, 30, of Henrico, Virginia, mentioned her mother and father withdrew cash from their retirement financial savings to pay for treatment denied by her health insurance firm.
Ekirch, who was recognized with small fiber neuropathy in 2023, was really helpful by her physician to strive an costly blood plasma remedy referred to as intravenous immunoglobulin to ease her near-constant ache. In April, a state company charged with reviewing insurance coverage denials upheld her insurer’s choice. Out-of-pocket, the remedy might price her mother and father tens of 1000’s of {dollars}.
“Never in a million years did I think I’d end up here,” Ekirch mentioned, “sick with little recourse.”
Earlier this yr, New Jersey congressman Jefferson Van Drew, a Republican, introduced a bill that might eradicate prior authorization altogether. But historical past suggests that might create new issues.
When South Carolina Medicaid lifted prior authorization for rehabilitative behavioral well being companies in 2014, the division’s prices for these companies skyrocketed from $300,000 to $2 million per week, making a $54 million funds shortfall after new suppliers flooded the market. Some suppliers have been finally referred to the South Carolina Attorney General’s Office for Medicaid fraud investigation. The state Medicaid company finally reinstated prior authorization for particular companies, spokesperson Jeff Leieritz mentioned.
What occurred in South Carolina illustrates a standard argument made by insurers: Prior authorization prevents fraud, reduces overspending, and guards in opposition to potential hurt to sufferers.
On the opposite hand, many docs and sufferers declare that cost-containment methods, together with prior authorization, do extra hurt than good.
On Feb. 3, 2024, Jeff Hall of Estero, Florida, grew to become paralyzed from the neck down and spent weeks in a coma after he instantly developed Guillain-Barré Syndrome. The explanation for his sickness stays unknown.
Hall, now 51, argued that the Florida Blue medical insurance plan he bought on the federal market hindered his restoration by capping the variety of days he was allowed to stay in an acute rehabilitation hospital final yr.
Hall mentioned that after he was pressured to “step down” to a lower-level nursing facility, his well being deteriorated so quickly inside six days that he was despatched to the emergency room, positioned on a ventilator, and required a second tracheostomy. Hall believes the insurance coverage firm’s protection limits set his restoration again by months — and, paradoxically, price the insurer extra. His spouse, Julie, estimated Jeff’s medical payments have exceeded $5 million, and most of his care has been lined by his insurer.
“Getting better is not always the goal of an insurance company. It’s a business,” Jeff Hall mentioned. “They don’t care.”
In a ready assertion, Florida Blue spokesperson Jose Cano mentioned the corporate understands “it can be a challenge when a member reaches the limit of their coverage for a specific service or treatment.” He inspired members affected by protection limits to contact their well being care suppliers to “explore service and treatment options.”
A ‘Rare and Exceptional’ Reversal
Back in West Virginia, Eric and Rebecca Tennant say they’re real looking about Eric’s prognosis.
They by no means anticipated histotripsy to remedy his most cancers. At finest, the process might purchase him extra time and may enable him to take an prolonged break from chemotherapy. That makes it price attempting, they mentioned.
As a security teacher with the West Virginia Office of Miners’ Health Safety and Training, Eric Tennant is a state worker and is insured by West Virginia’s Public Employees Insurance Agency.
As the Tennants pleaded with the state insurance coverage company to cowl histotripsy, they confronted an inventory of different firms concerned within the choice, together with UMR, a UnitedHealthcare subsidiary that contracts with West Virginia to handle the general public worker plans, and MES Peer Review Services, a Massachusetts firm that upheld the insurer’s choice in March, citing that histotripsy is “unproven in this case and is not medically necessary.”
None of their appeals labored. After KFF Health News and NBC News reached out to West Virginia’s Public Employees Insurance Agency with questions for this text, the company modified its thoughts, explaining the insurer had consulted with medical consultants to additional consider the case.
“This decision reflects a rare and exceptional situation” and doesn’t symbolize a change within the Public Employees Insurance Agency’s general protection insurance policies,” Director Brent Wolfingbarger mentioned in a ready assertion to KFF Health News.
In a separate ready assertion, UnitedHealthcare spokesperson Eric Hausman mentioned the corporate 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 mentioned in late May, after the sooner insurance coverage denials have been reversed, “and its impact on survival or cancer recurrence is unknown.”
MES Peer Review Services didn’t reply to a request for an interview.
Meanwhile, Rebecca Tennant worries it could be too late. She mentioned her husband was first evaluated for histotripsy in February. But his well being has lately taken a flip for the more serious. In late May and early June, she mentioned, he spent 5 days within the hospital after growing coronary heart and lung issues.
Eric Tennant is now not thought of a viable candidate for histotripsy, his spouse mentioned, though the Tennants are hopeful that may change if his well being improves. Scans scheduled for July will decide whether or not his most cancers has continued to progress. Rebecca Tennant blames her husband’s insurance coverage plan for losing months of their time.
“Time is precious,” she mentioned. “They know he has stage 4 cancer, and it’s almost like they don’t care if he lives or dies.”
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NBC News well being and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report.