Lauren Sausser
Sheldon Ekirch is used to being disenchanted by her medical health insurance firm.
That’s why Ekirch, 31, of Henrico, Virginia, was shocked when she discovered Anthem would lastly need to pay for life-changing medical therapy.
For two years, she had battled the corporate to cowl blood plasma infusions known as intravenous immunoglobulin, or IVIG. The therapy has been proven, in some instances, to enhance signs related to small-fiber neuropathy, a situation that makes Ekirch’s limbs really feel like they’re on fireplace.
But Anthem had repeatedly denied protection for IVIG, which prices about $10,000 per infusion. Then, in February, an exterior evaluate of her case carried out for the Virginia Bureau of Insurance overturned Anthem’s denial. It meant her mother and father would not have to withdraw cash from her father’s retirement financial savings to pay out-of-pocket. Already, they’d spent about $90,000.
“My mom was sobbing. My dad was on his knees, sobbing. I don’t think I’ve ever seen him cry like that,” mentioned Ekirch, describing her mother and father’ response to the reversal.
“I think I’m in shock from it all,” she mentioned.
In a ready assertion, Stephanie DuBois, a spokesperson for Anthem Blue Cross and Blue Shield, mentioned IVIG didn’t “align with our evidence-based standards.” But she mentioned the corporate respects “the external reviewer’s decision” to overturn the denial.
Meanwhile, annually tens of millions of sufferers like Ekirch proceed to face denials via the prior authorization course of, which requires many sufferers or their medical doctors to hunt preapproval from well being insurers earlier than continuing with medical care. And regardless of guarantees of reform from insurance coverage corporations, denials stay a irritating hallmark of the American well being care system.
Last June, Trump administration officers introduced in a press convention that medical health insurance leaders had pledged to simplify prior authorization by taking steps corresponding to “reducing the scope of claims” topic to preapproval. The insurers additionally promised quicker turnaround instances and “clear, easy-to-understand explanations” of their choices.
Yet in February, when KFF Health News contacted greater than a dozen main insurers that signed the pledge, half of them failed to offer specifics about well being care providers for which they not require prior authorization.
A January press release mentioned the business stays dedicated to the trouble. But physicians, shoppers, and affected person advocates are pessimistic concerning the insurers’ willingness to observe via with these voluntary adjustments.
“They have no desire to do what’s in the best interest of the patient if it’s going to hurt their pockets,” mentioned Matt Toresco, CEO of Archo Advocacy, a affected person advocacy and consulting firm.
“In the insurance world, the fiduciary responsibility is not to the patient,” he mentioned. “It’s to the Street,” he mentioned, referring to Wall Street.
Meaningful Change?
The Department of Health and Human Services didn’t reply to questions for this text. The few updates the federal authorities has issued since June on prior authorization reform embody a September announcement about making certain clinicians can submit requests electronically.
AHIP, the well being insurer commerce group that issued the January press launch, didn’t present details about particular therapies, codes, drugs, or procedures that its members have launched from prior authorization since signing the pledge.
“We will have additional progress updates coming out later this spring,” mentioned Kelly Parsons, a spokesperson for the Blue Cross Blue Shield Association, which represents 33 unbiased Blue Cross and Blue Shield corporations. She additionally provided no specifics.
Blue Cross and Blue Shield corporations that cowl sufferers in Alabama, Arkansas, Iowa, Michigan, Pennsylvania, South Carolina, South Dakota, and Tennessee both didn’t reply to questions for this text or deferred to the Blue Cross Blue Shield Association.
By distinction, different insurers cited particular examples of change.
Aetna CVS Health started “bundling” prior authorizations for musculoskeletal procedures, in addition to for lung, breast, and prostate most cancers sufferers, spokesperson Phil Blando mentioned. This apply permits suppliers to file one authorization request for a affected person’s therapy as an alternative of a number of.
And Humana eliminated prior authorization necessities for “diagnostic services across colonoscopies,” amongst different adjustments, spokesperson Mark Taylor mentioned.
UnitedHealthcare, which got here underneath intense scrutiny for its use of prior authorization following the fatal shooting of one among its executives in late 2024, eliminated prior authorization necessities on Jan. 1 for “certain nuclear imaging, obstetrical ultrasound and echocardiogram procedures,” amongst different adjustments, spokesperson Matthew Rodriguez mentioned.
Yet some well being care insiders doubt these adjustments will quantity to a lot.
“Insurers have made similar promises before and failed to deliver meaningful change,” mentioned Bobby Mukkamala, president of the American Medical Association, which represents U.S. physicians and medical college students.
In 2018, various health industry groups, together with AHIP and the Blue Cross Blue Shield Association, introduced a partnership “to identify opportunities to improve the prior authorization process.” Yet, Mukkamala wrote in response to the June pledge, the method stays “costly, inefficient, opaque, and too often hazardous for patients.”
“Transparency is essential so everyone can see whether real reforms are happening,” he instructed KFF Health News.
Curbed Enthusiasm
Prior authorization could also be getting extra political consideration, however knowledge exhibits sufferers — significantly these with persistent situations that require ongoing medical therapy — proceed to face boundaries to doctor-recommended care.
Among sufferers in that group, 39% mentioned prior authorization is “the single biggest burden” in receiving care, based on a recent poll by KFF, a well being data nonprofit that features KFF Health News.
I used to be combating to outlive, after which I used to be combating to persuade somebody that I deserved to outlive.
Anna Hocum
That’s true for Payton Herres, 25, of Dayton, Ohio, who in 2012 obtained a coronary heart transplant, which requires her to take an antirejection prescription remedy for the remainder of her life.
But final 12 months, she mentioned, Anthem denied protection for the costly drug. She’d been taking it for greater than 10 years.
“I’ve been with Anthem my entire life, and then, all of a sudden — I don’t know what happened — they just started denying me over and over,” she mentioned. “I almost ran out of medication.”
DuBois, the Anthem spokesperson, confirmed the corporate has permitted the remedy. It had not taken Herres’ therapy historical past under consideration when it denied protection for the drug, DuBois mentioned.
But Herres mentioned the corporate would require her to acquire a brand new authorization for the remedy in September.
“Are they going to deny other things, too?” she requested. “I hope I don’t have to keep fighting like this for the rest of my life.”
Anna Hocum, 25, is making ready for the same struggle. In 2024 and 2025, her insurer repeatedly denied protection for costly therapy used to sluggish the development of a uncommon genetic situation that destroys her lung operate.
“I just thought I was going to die,” mentioned Hocum, of Milwaukee. “I was fighting to survive, and then I was fighting to convince someone that I deserved to survive.”
Like with Ekirch, Hocum’s mother and father paid whereas they waited for her insurance coverage firm to overturn the preliminary denials. Friends and household donated greater than $30,000 via a GoFundMe marketing campaign to assist defray the prices.
Then final spring, Hocum mentioned, her insurer reversed the denial with out an obvious clarification. But the approval is legitimate for under 12 months, so she’s going to want one other prior authorization approval this 12 months.
“It is scary,” she mentioned. “It’s not guaranteed that it’ll be accepted.”
They fought me tooth and nail each step of the way in which, to the purpose that they made my life a residing hell.
Sheldon Ekirch
Even although it’s a “huge relief” that Anthem is now obligated to cowl Ekirch’s therapy, her mom doesn’t know if or how the household will recoup the cash it has already paid.
In a letter to Ekirch confirming the exterior reviewer’s resolution, Anthem defined that the authorization can be legitimate for a 12 months starting on Sept. 25, 2025. “We are pleased we can provide a favorable response in this case,” a grievance and appeals analyst for Anthem wrote.
Ekirch mentioned the letter highlighted the corporate’s hypocrisy.
“They act as though they are a benevolent organization doing me a favor.” In actuality, she mentioned, “they fought me tooth and nail every step of the way, to the point that they made my life a living hell.”
Now, Ekirch’s entry to IVIG could also be in jeopardy once more. Her COBRA protection via Anthem expires in late March. In April, she might want to transition to a brand new insurance coverage plan — and she or he’s bracing herself for one more spherical of prior authorization.
“I just am so afraid that I don’t have the strength to go through and do what it takes,” Ekirch mentioned, “to fight this battle again.”
Do you’ve got an expertise with prior authorization you’d prefer to share? Click here to inform KFF Health News your story.
