Families scrambling to pay five-figure bills as clock ticks on promised pre-approval reforms

Sheldon Ekirch is used to being let down by his health insurance company.

That’s why Henrico Ekirch, 31, of Virginia, was stunned when he learned Anthem would eventually have to pay for the life-changing treatment.

For two years, he fought the company to cover infusions of blood plasma called intravenous immunoglobulin, or IVIG. The treatment has been shown, in some cases, to improve symptoms associated with small-fiber neuropathy, a condition that makes Eckert’s limbs feel like they’re on fire.

But Anthem repeatedly denied coverage for IVIG, which costs about $10,000 per infusion. Then, in February, an external review of his case conducted for the Virginia Bureau of Insurance overturned Anthem’s denial. This means her parents no longer have to draw money from her father’s retirement savings to pay out-of-pocket. So far, they’ve spent about $90,000.

“My mom was crying. My dad was on his knees crying. I don’t think I’ve ever seen him cry like that,” said Ekirch, describing his parents’ reaction to the flip.

“I think I pushed it all the way,” he said.

In a prepared statement, Anthem Blue Cross and Blue Shield spokeswoman Stephanie DuBois said IVIG “does not align with our evidence-based standards.” But he said the company declined to respect the “external reviewer’s decision.”

Meanwhile, each year millions of patients like Ekirch face denials through the prior authorization process, which requires many patients or their doctors to get pre-approval from health insurers before proceeding with medical care. And despite insurance companies’ promises of reform, denials remain a frustrating feature of the American health care system.

Last June, Trump administration officials announced at a press conference that health insurance leaders have pledged to make pre-authorization easier by taking steps such as “Reducing the scope of claims“Subject to pre-approval. Insurers promised quick turnaround times and “clear, easy-to-understand explanations” of their decisions.

Yet in February, when KFF Health News contacted more than a dozen major insurance companies that signed the pledge, half of them failed to provide specific information about health care services for which they no longer require prior authorization.

A January press release That said, the industry is committed to the effort. But physicians, consumers and patient advocates are pessimistic about insurers’ willingness to follow through with these voluntary changes.

“They have no desire to do something that’s in the patient’s best interest that’s going to hurt their pocketbook,” says Matt Toresco, CEO of Arco Advocacy, a patient advocacy and consulting firm.

“In the insurance world, the fiduciary responsibility is not the patient,” he said. “It’s on the street,” he said, referring to Wall Street.

Meaningful change?

The Department of Health and Human Services did not respond to questions for this article. This is one of several updates the federal government has issued since June to reform prior approvals September announcement Regarding ensuring that physicians can submit requests electronically.

AHIP, the health insurer trade group that issued the January press release, did not provide information about specific treatments, codes, drugs or procedures that have been exempted from prior approval since its members signed the pledge.

“We will have additional progress updates later this spring,” said Kelly Parsons, a spokeswoman for the Blue Cross Blue Shield Association, which represents 33 independent Blue Cross and Blue Shield companies. He offered no specifics.

Blue Cross and Blue Shield companies that cover patients in Alabama, Arkansas, Iowa, Michigan, Pennsylvania, South Carolina, South Dakota and Tennessee either did not respond to questions for this article or deferred to the Blue Cross Blue Shield Association.

In contrast, other insurers cited specific examples of change.

Aetna CVS Health has begun “bundling” prior approvals for lung, breast and prostate cancer patients alongside musculoskeletal procedures, spokesman Phil Blando said. This practice allows providers to file a single authorization request instead of treating multiple patients.

And Humana removed prior authorization requirements for “diagnostic services including colonoscopy,” among other changes, spokesman Mark Taylor said.

UnitedHealthcare, which later came under intense scrutiny for its use of prior authorizations Deadly shooting One of its executives, through the end of 2024, removed prior authorization requirements on Jan. 1 for “certain nuclear imaging, obstetric ultrasound and echocardiogram procedures,” among other changes, spokesman Matthew Rodriguez said.

Yet some healthcare insiders doubt these changes will be much.

“Insurers have made similar promises before and failed to make meaningful changes,” said Bobby Mukamala, president of the American Medical Association, which represents US physicians and medical students.

In 2018, Various health industry groupsAHIP and the Blue Cross Blue Shield Association announced a partnership “to identify opportunities to improve the prior authorization process.” nevertheless, Written by Mukkamala In response to June’s pledge, the process remains “expensive, inefficient, opaque and often dangerous to patients.”

“Transparency is essential so everyone can see if real reforms are happening,” he told KFF Health News.

Forbidden enthusiasm

Earlier approval may be getting more political attention, but data shows that patients — especially those with chronic conditions that require ongoing treatment — face barriers to doctor-recommended care.

Among this group of patients, 39% said prior authorization was the “single greatest burden” of care. Recent polls by KFF, a health information non-profit that includes KFF Health News.

That’s true for Peyton Harris, 25, of Dayton, Ohio, who received a heart transplant in 2012, requiring her to take an anti-rejection prescription drug for the rest of her life.

But last year, he said, Anthem denied expensive drug coverage. He has been taking it for over 10 years.

“I’ve been with Anthem my whole life, and then, all of a sudden — I don’t know what happened — they started denying me over and over again,” she said. “I almost ran out of medicine.”

DuBois, an Anthem spokesman, confirmed that the company has approved the drug. DuBois said it did not take into account Herres’ medical history when it denied drug coverage.

But Herres said the company needs him to get a new approval for the drug in September.

“Will they deny other things as well?” he asked. “I hope I don’t have to fight like this for the rest of my life.”

Anna Hokum, 25, is preparing for a similar fight. In 2024 and 2025, his insurer repeatedly denied coverage for expensive treatments used to slow the progression of a rare genetic condition that destroyed his lung function.

“I just thought I was going to die,” said Hokam of Milwaukee. “I was fighting to survive, and then I was fighting to convince someone that I was worth living.”

Like Ekirch, Hokum’s parents paid while they waited for his insurance company to overturn initial denials. Friends and family have donated more than $30,000 through a GoFundMe campaign to help cover costs.

Then last spring, Hocum said, her insurer reversed the denial without an apparent explanation. But the approval is only valid for 12 months, so he will need another pre-approval this year.

“It’s scary,” she said. “It’s not guaranteed that it will be accepted.”

While it’s a “huge relief” that Anthem is now obligated to cover Ekirch’s treatment, his mother doesn’t know how the family will pay back the money they’ve already paid.

In a letter to Ekirch confirming the external reviewer’s decision, Anthem explained that the approval would be valid for one year beginning Sept. 25, 2025. “We are pleased that we can provide a favorable response in this case,” wrote a complaints and appeals analyst for Anthem.

Ekirch said the letter exposed the hypocrisy of the company.

“They act like they’re a charity doing a favor for me.” In fact, he said, “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 access to IVIG may be in jeopardy again. His COBRA coverage by Music ends at the end of March. In April, she’ll have to switch to a new insurance plan — and she’s bracing herself for yet another pre-approval.

“I’m so afraid I don’t have the energy to go and do whatever it takes,” Ekirch said, “to fight this war again.”

Have an experience with pre-approval you want to share? Click here For telling your story to KFF Health News.

KFF Health News A national newsroom that produces in-depth journalism on health issues and is one of KFF’s core operating programs—an independent source of health policy research, polling and journalism. Learn more about KFF.

Membership Free Morning Briefing by KFF Health News.

this Article appeared first KFF Health News and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.

–

Previously published at kffhealthnews.org

***