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.
Lately, nevertheless, the 58-year-old had motive to hope issues would enhance. Final fall, his spouse, Rebecca, discovered 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 may lengthen his life and purchase him extra downtime between rounds of chemotherapy.
Early this yr, Tennant’s oncologist agreed he was a superb 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 remedy was “not medically necessary,” in line with insurance coverage paperwork.
Well being insurers concern 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.
Latest 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 a number 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 a big 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 literally nothing we can do to get them to change,” she stated in an April interview with KFF Well being Information. “They’re, like, not accountable to anyone.”
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, stated Jay Pickern, an assistant professor of well being companies administration at Auburn College.
“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 stated. But, as soon as the information cycle died down, “everything went back to the status quo.”
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 observe 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 line with a 2024 U.S. Senate report. By denying expensive 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,” stated Pickern, who wrote in regards to the damaging 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 largely occurs behind the scenes, virtually all the time electronically, and almost all requests are rapidly, and even immediately, accepted.
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 authentic Medicare. Some well being coverage consultants additionally level to the passage of the Inexpensive Care Act in 2010, which prohibited well being insurers from denying protection to sufferers with preexisting situations, prompting firms to search out different methods to regulate prices.
“But we can’t really prove 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 companies require prior authorization, she stated, making it tough to attract comparisons earlier than and after the passage of the Inexpensive 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 put up an inventory of well being care companies and codes for which prior authorization is required. A North Carolina invoice would require docs who assessment 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 Division of Well being and Human Companies quickly lifted all prior authorization necessities for Medicaid beneficiaries looking for rehabilitative behavioral well being companies.
Federal guidelines to switch 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, lowering wait instances, and enhancing transparency.
These modifications had been supported by AHIP, a commerce group that represents well being insurers.
‘Sick With Little Recourse’
However 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 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 proven promise in treating the identical sort of mind tumor Schrift was recognized with in 2022, in line with 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 firms to pay for them.
In Might, Sheldon Ekirch, 30, of Henrico, Virginia, stated her dad and mom withdrew cash from their retirement financial savings to pay for remedy denied by her medical 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 determination. Out-of-pocket, the remedy might value her dad and mom tens of hundreds of {dollars}.
“Never in a million years did I think I’d end up here,” Ekirch stated, “sick with little recourse.”
Earlier this yr, New Jersey congressman Jefferson Van Drew, a Republican, launched a invoice that might eradicate prior authorization altogether. However 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 finances 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 companies, spokesperson Jeff Leieritz stated.
What occurred in South Carolina illustrates a typical 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 abruptly developed Guillain-Barré Syndrome. The reason for his sickness stays unknown.
Corridor, 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.
Corridor stated 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, satirically, 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 better is not always the goal of an insurance company. It’s a business,” Jeff Corridor stated. “They don’t care.”
In a ready assertion, Florida Blue spokesperson Jose Cano stated 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
Again in West Virginia, Eric and Rebecca Tennant say they’re practical about Eric’s prognosis.
They by no means anticipated histotripsy to treatment his most cancers. At greatest, the process may purchase him extra time and may enable him to take an prolonged break from chemotherapy. That makes it price 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 determination, together with UMR, a UnitedHealthcare subsidiary that contracts with West Virginia to handle the general public worker plans, and MES Peer Overview Companies, a Massachusetts firm that upheld the insurer’s determination in March, citing that histotripsy is “unproven in this case and is not medically necessary.”
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 decision reflects a rare and exceptional situation” and doesn’t characterize a change within the Public Staff Insurance coverage Company’s general 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 “anyone navigating through life-threatening care decisions.”
“Currently, there is no evidence that histotripsy is as effective as alternative treatment options available,” he stated in late Might, after the sooner insurance coverage denials had been reversed, “and its impact on survival or cancer recurrence is unknown.”
MES Peer Overview 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 just lately taken a flip for the more serious. In late Might and early June, she stated, he spent 5 days within the hospital after creating coronary heart and lung issues.
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 precious,” she stated. “They know he has stage 4 cancer, and it’s almost 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.
