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.
Not too long ago, nevertheless, the 58-year-old had purpose to hope issues would enhance. Final fall, his spouse, Rebecca, realized of a comparatively new, noninvasive process known as histotripsy, which makes use of focused ultrasound waves to destroy tumors within the liver. The remedy might lengthen his life and purchase him extra downtime between rounds of chemotherapy.
Early this yr, Tennant’s oncologist agreed he was candidate because the largest tumor in his physique is in his liver. However that’s when his household started preventing one other adversary: their well being insurer, which determined the remedy was “not medically mandatory,” based on insurance coverage paperwork.
Well being insurers challenge 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 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 firms 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 medical doctors complain that insurance coverage denials are worse than ever as the usage of prior authorization has ramped up in recent times, reporting by KFF Well being Information and NBC Information discovered.
When the Tennant household was advised histotripsy would price $50,000 and insurance coverage wouldn’t cowl it, they appealed the denial 4 instances.
“It’s an enormous mess,” stated Rebecca Tennant, who described feeling like a pingpong ball, bouncing between the insurer and numerous well being care firms concerned within the appeals course of.
“There’s actually nothing we are able to do to get them to alter,” she stated in an April interview with KFF Well being Information. “They’re, like, not accountable to anybody.”
Whereas the killing of UnitedHealthcare chief executive Brian Thompson in December incited a recent wave of public fury about denials, there may be virtually no hope of significant change on the horizon, stated Jay Pickern, an assistant professor of well being providers administration at Auburn College.
“You’ll assume the homicide of a serious medical health insurance CEO on the streets of New York in broad daylight can be a serious watershed second,” Pickern stated. But, as soon as the information cycle died down, “all the things 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 known as precertification, preauthorization, or preapproval) earlier than filling prescriptions, scheduling imaging, surgical procedure, or an inpatient hospital keep, amongst different bills.
The follow isn’t new. Insurers have used prior authorization for many years to restrict fraud, forestall affected person hurt, and management prices. In some circumstances, it’s used to deliberately generate earnings for well being insurers, based on a 2024 U.S. Senate report. By denying pricey care, firms pay much less for well being care bills whereas nonetheless gathering premiums.
“On the finish of the day, they’re a enterprise and so they exist to generate profits,” stated Pickern, who wrote about the negative impacts of prior authorization on affected person take care of The American Journal of Managed Care.
For many sufferers, although, the method works seamlessly. Prior authorization principally occurs behind the scenes, virtually all the time electronically, and almost all requests are shortly, and even immediately, accepted.
However the usage of prior authorization has additionally elevated in recent times. That’s partly as a result of progress of enrollment in Medicare Benefit plans, which rely heavily on prior authorization in contrast with unique Medicare. Some well being coverage consultants 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 firms to search out different methods to manage prices.
“However we are able to’t actually show this,” stated Kaye Pestaina, director of the Program on Affected person and Shopper 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 stated, making it troublesome 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 passed a law that can require well being insurers to publicly submit an inventory of well being care providers and codes for which prior authorization is required. A North Carolina invoice would require medical doctors who overview affected person appeals to have practiced medication 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 in search of 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 forestall insurance coverage firms from denying fee for doctor-recommended remedy, and so they apply solely to some classes of medical health insurance, together with Medicare Benefit and Medicaid. Practically 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 Might 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 kind of mind tumor Schrift was recognized with in 2022, based on 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 sicknesses to attempt experimental medication, but it surely doesn’t obligate insurance coverage firms to pay for them.
In Might, Sheldon Ekirch, 30, of Henrico, Virginia, stated 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 beneficial by her physician to attempt an costly blood plasma remedy known 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 remedy might price her mother and father tens of hundreds of {dollars}.
“By no means in 1,000,000 years did I feel I’d find yourself right here,” Ekirch stated, “sick with little recourse.”
Earlier this yr, New Jersey congressman Jefferson Van Drew, a Republican, introduced a bill that will get rid of prior authorization altogether. However historical past suggests that will 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 finally referred to the South Carolina Legal professional Common’s Workplace for Medicaid fraud investigation. The state Medicaid company finally reinstated prior authorization for particular providers, spokesperson Jeff Leieritz stated.
What occurred in South Carolina illustrates a typical argument made by insurers: Prior authorization prevents fraud, reduces overspending, and guards towards potential hurt to sufferers.
Then again, many medical doctors 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 immediately 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 stated that after he was compelled 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, paradoxically, price 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 just isn’t all the time the aim of an insurance coverage firm. It’s a enterprise,” Jeff Corridor stated. “They don’t care.”
In a ready assertion, Florida Blue spokesperson Jose Cano stated the corporate understands “it may be a problem when a member reaches the restrict of their protection for a particular service or remedy.” He inspired members affected by protection limits to contact their well being care suppliers to “discover service and remedy choices.”
A ‘Uncommon and Distinctive’ Reversal
Again in West Virginia, Eric and Rebecca Tennant say they’re reasonable about Eric’s prognosis.
They by no means anticipated histotripsy to treatment his most cancers. At greatest, the process might purchase him extra time and would possibly enable him to take an prolonged break from chemotherapy. That makes it value attempting, they stated.
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 Staff Insurance coverage Company.
Because the Tennants pleaded with the state insurance coverage company to cowl histotripsy, they confronted an inventory of different firms 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 Assessment Companies, a Massachusetts firm that upheld the insurer’s resolution in March, citing that histotripsy is “unproven on this case and isn’t medically mandatory.”
None of their appeals labored. After KFF Well being Information and NBC Information reached out to West Virginia’s Public Staff Insurance coverage Company with questions for this text, the company modified its thoughts, explaining the insurer had consulted with medical consultants to additional consider the case.
“This resolution displays a uncommon and distinctive state of affairs” and doesn’t signify a change within the Public Staff Insurance coverage Company’s total protection insurance policies,” Director Brent Wolfingbarger stated in a ready assertion to KFF Well being Information.
In a separate ready assertion, UnitedHealthcare spokesperson Eric Hausman stated the corporate sympathizes with “anybody navigating via life-threatening care selections.”
“Presently, there isn’t any proof that histotripsy is as efficient as different remedy choices accessible,” he stated in late Might, after the sooner insurance coverage denials had been reversed, “and its impression on survival or most cancers recurrence is unknown.”
MES Peer Assessment Companies didn’t reply to a request for an interview.
In the meantime, Rebecca Tennant worries it could be too late. She stated her husband was first evaluated for histotripsy in February. However his well being has lately taken a flip for the more severe. In late Might and early June, she stated, he spent 5 days within the hospital after creating coronary heart and lung problems.
Eric Tennant is now not thought of a viable candidate for histotripsy, his spouse stated, 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 treasured,” she stated. “They know he has stage 4 most cancers, and it’s virtually like they don’t care if he lives or dies.”
NBC Information well being and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report.