BRIDGEPORT, W.Va. — By the point 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. However chemotherapy has additionally ravaged Tennant’s physique and his high quality of life.
Just lately, nevertheless, the 58-year-old had motive to hope issues would enhance. Final 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 therapy may lengthen his life and purchase him extra downtime between rounds of chemotherapy.
Early this yr, Tennant’s oncologist agreed he was candidate for the reason that largest tumor in his physique is in his liver. However that’s when his household started combating one other adversary: their well being insurer, which determined the therapy was “not medically obligatory,” in response to insurance coverage paperwork.
Well being insurers concern thousands and thousands 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 selections by medical professionals they’ve by no means met who might lack related coaching.
Latest federal and state efforts, in addition to adjustments undertaken by insurance coverage corporations themselves, have tried to enhance a 50-year-old system that disproportionately burdens a few of 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 Well being Information and NBC Information discovered.
When the Tennant household was instructed histotripsy would value $50,000 and insurance coverage wouldn’t cowl it, they appealed the denial 4 instances.
“It’s an enormous mess,” mentioned Rebecca Tennant, who described feeling like a pingpong ball, bouncing between the insurer and varied well being care corporations concerned within the appeals course of.
“There’s actually nothing we will do to get them to vary,” she mentioned in an April interview with KFF Well being Information. “They’re, like, not accountable to anybody.”
Whereas the killing of UnitedHealthcare chief government 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 providers administration at Auburn College.
“You’d suppose the homicide of a serious medical health insurance CEO on the streets of New York in broad daylight could be a serious watershed second,” Pickern mentioned. But, as soon as the information cycle died down, “every part went again to the established order.”
An Unintended Consequence of Well being 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 income for well being insurers, in response to a 2024 U.S. Senate report. By denying expensive care, corporations pay much less for well being care bills whereas nonetheless gathering premiums.
“On the finish of the day, they’re a enterprise they usually exist to generate income,” mentioned Pickern, who wrote concerning the damaging impacts of prior authorization on affected person look after The American Journal of Managed Care.
For many sufferers, although, the method works seamlessly. Prior authorization principally occurs behind the scenes, virtually at all times electronically, and practically all requests are shortly, and even immediately, authorised.
However using prior authorization has additionally elevated lately. That’s partly because of the progress of enrollment in Medicare Benefit plans, which rely closely on prior authorization in contrast with unique Medicare. Some well being coverage specialists additionally level to the passage of the Reasonably priced Care Act in 2010, which prohibited well being insurers from denying protection to sufferers with preexisting circumstances, prompting corporations to seek out different methods to regulate prices.
“However we will’t actually show this,” mentioned Kaye Pestaina, director of the Program on Affected person and Client Safety at KFF, a well being info nonprofit that features KFF Well being Information. Well being insurers haven’t been traditionally clear about which providers require prior authorization, she mentioned, making it tough to attract comparisons earlier than and after the passage of the Reasonably priced Care Act.
In the meantime, many states want to overhaul the prior authorization course of.
In March, Virginia handed a legislation that can require well being insurers to publicly publish an inventory of well being care providers 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 answer nonurgent authorization requests inside 5 days and extra pressing requests inside two days, amongst different mandates.
And in 2014, the South Carolina Division of Well being and Human Companies briefly lifted all prior authorization necessities for Medicaid beneficiaries looking for rehabilitative behavioral well being providers.
Federal guidelines to change prior authorization that had 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, decreasing wait instances, and enhancing transparency.
These adjustments had been supported by AHIP, a commerce group that represents well being insurers.
‘Sick With Little Recourse’
However the brand new federal guidelines received’t stop insurance coverage corporations from denying fee for doctor-recommended therapy, they usually apply solely to some classes of medical health insurance, together with Medicare Benefit and Medicaid. Almost 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 greater.
On Could 12, Alexander Schrift, 35, died at residence 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 proven promise in treating the identical sort of mind tumor Schrift was recognized with in 2022, in response to researchers on the Dana-Farber Most cancers Institute in Boston and the Institute of Most cancers Analysis in London.
However Schrift’s insurance coverage firm refused to pay. The Proper to Attempt Act, signed by President Donald Trump in 2018, entitles sufferers with terminal diseases to strive experimental medication, nevertheless it doesn’t obligate insurance coverage corporations to pay for them.
In Could, Sheldon Ekirch, 30, of Henrico, Virginia, mentioned her mother and father withdrew cash from their retirement financial savings to pay for therapy denied by her medical health insurance firm.
Ekirch, who was recognized with small fiber neuropathy in 2023, was beneficial by her physician to strive an costly blood plasma therapy 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 resolution. Out-of-pocket, the therapy might value her mother and father tens of 1000’s of {dollars}.
“By no means in 1,000,000 years did I feel I’d find yourself right here,” Ekirch mentioned, “sick with little recourse.”
Earlier this yr, New Jersey congressman Jefferson Van Drew, a Republican, launched a invoice that may eradicate prior authorization altogether. However historical past suggests that may create new issues.
When South Carolina Medicaid lifted prior authorization for rehabilitative behavioral well being providers in 2014, the division’s prices for these providers skyrocketed from $300,000 to $2 million per week, making a $54 million funds shortfall after new suppliers flooded the market. Some suppliers had been ultimately referred to the South Carolina Legal professional Normal’s Workplace for Medicaid fraud investigation. The state Medicaid company ultimately reinstated prior authorization for particular providers, 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.
However, many docs and sufferers declare that cost-containment methods, together with prior authorization, do extra hurt than good.
On Feb. 3, 2024, Jeff Corridor of Estero, Florida, grew to become paralyzed from the neck down and spent weeks in a coma after he out of the blue developed Guillain-Barré Syndrome. The reason for his sickness stays unknown.
Corridor, now 51, argued that the Florida Blue medical health 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.
Corridor 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. Corridor believes the insurance coverage firm’s protection limits set his restoration again by months — and, mockingly, value the insurer extra. His spouse, Julie, estimated Jeff’s medical payments have exceeded $5 million, and most of his care has been coated by his insurer.
“Getting higher shouldn’t be at all times the purpose of an insurance coverage firm. It’s a enterprise,” Jeff Corridor mentioned. “They don’t care.”
In a ready assertion, Florida Blue spokesperson Jose Cano mentioned the corporate understands “it may be a problem when a member reaches the restrict of their protection for a selected service or therapy.” He inspired members affected by protection limits to contact their well being care suppliers to “discover service and therapy choices.”
A ‘Uncommon and Distinctive’ Reversal
Again in West Virginia, Eric and Rebecca Tennant say they’re practical about Eric’s prognosis.
They by no means anticipated histotripsy to remedy his most cancers. At greatest, the process may purchase him extra time and would possibly enable him to take an prolonged break from chemotherapy. That makes it value making an attempt, they mentioned.
As a security teacher with the West Virginia Workplace of Miners’ Well being Security and Coaching, Eric Tennant is a state worker and is insured by West Virginia’s Public Workers Insurance coverage Company.
Because the Tennants pleaded with the state insurance coverage company to cowl histotripsy, they confronted an inventory of different corporations concerned within the resolution, together with UMR, a UnitedHealthcare subsidiary that contracts with West Virginia to handle the general public worker plans, and MES Peer Evaluation Companies, a Massachusetts firm that upheld the insurer’s resolution in March, citing that histotripsy is “unproven on this case and isn’t medically obligatory.”
None of their appeals labored. After KFF Well being Information and NBC Information reached out to West Virginia’s Public Workers Insurance coverage Company with questions for this text, the company modified its thoughts, explaining the insurer had consulted with medical specialists to additional consider the case.
“This resolution displays a uncommon and distinctive scenario” and doesn’t signify a change within the Public Workers Insurance coverage Company’s general protection insurance policies,” Director Brent Wolfingbarger mentioned in a ready assertion to KFF Well being Information.
In a separate ready assertion, UnitedHealthcare spokesperson Eric Hausman mentioned the corporate sympathizes with “anybody navigating by life-threatening care selections.”
“At present, there is no such thing as a proof that histotripsy is as efficient as various therapy choices out there,” he mentioned in late Could, after the sooner insurance coverage denials had been reversed, “and its impression on survival or most cancers recurrence is unknown.”
MES Peer Evaluation Companies didn’t reply to a request for an interview.
In the meantime, Rebecca Tennant worries it may be too late. She mentioned her husband was first evaluated for histotripsy in February. However his well being has lately taken a flip for the more severe. In late Could and early June, she mentioned, he spent 5 days within the hospital after growing coronary heart and lung problems.
Eric Tennant is not thought-about a viable candidate for histotripsy, his spouse mentioned, though the Tennants are hopeful that can 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 valuable,” she mentioned. “They know he has stage 4 most cancers, and it’s virtually like they don’t care if he lives or dies.”
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NBC Information well being and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report.
KFF Well being Information is a nationwide newsroom that produces in-depth journalism about well being points and is without doubt one of the core working applications at KFF—an impartial supply of well being coverage analysis, polling, and journalism. Be taught extra about KFF.
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