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<\/p>\nHENRICO, Va. \u2014 Sheldon Ekirch spends a lot of time on hold with her health insurance company.<\/p>\n
Sometimes, as the minutes tick by and her frustration mounts, Ekirch, 30, opens a meditation app on her phone. It was recommended by her psychologist to help with the depression associated with a stressful and painful medical disorder.<\/p>\n
In 2023, Ekirch was diagnosed with small fiber neuropathy, a condition that makes her limbs and muscles feel as if they\u2019re on fire. Now she takes more than a dozen prescriptions to manage chronic pain and other symptoms, including insomnia.<\/p>\n
\u201cI don\u2019t feel like I am the person I was a year and a half ago,\u201d said Ekirch, who was on the cusp of launching her law career, before getting sick. \u201cLike, my body isn\u2019t my own.\u201d<\/p>\n
Ekirch said specialists have suggested that a series of infusions made from blood plasma called intravenous immunoglobulin \u2014 IVIG, for short \u2014 could ease, or potentially eradicate, her near-constant pain. But Ekirch\u2019s insurance company has repeatedly denied coverage for the treatment, according to documents provided by the patient.<\/p>\n
Patients with Ekirch\u2019s condition don\u2019t always respond to IVIG, but she said she deserves to try it, even though it could cost more than $100,000.<\/p>\n
\u201cI\u2019m paying a lot of money for health insurance,\u201d said Ekirch, who pays more than $600 a month in premiums. \u201cI don\u2019t understand why they won\u2019t help me, why my life means so little to them.\u201d<\/p>\n
For patient advocates and health economists, cases like Ekirch\u2019s illustrate why prior authorization has become such a chronic pain point for patients and doctors. For 50 years, insurers have employed prior authorization, they say, to reduce wasteful health care spending, prevent unnecessary treatment, and guard against potential harm.<\/p>\n
The practice differs by insurance company and plan, but the rules often require patients or their doctors to request permission from the patient\u2019s health insurance company before proceeding with a drug, treatment, or medical procedure.<\/p>\n
The insurance industry provides little information about how often prior authorization is used. Transparency requirements established by the federal government to shed light on the use of prior authorization by private insurers haven\u2019t been broadly enforced, said Justin Lo, a senior researcher for the Program on Patient and Consumer Protections at KFF, a health information nonprofit that includes KFF Health News.<\/p>\n
Yet it\u2019s widely acknowledged that prior authorization tends to disproportionately impact some of the sickest people who need the most expensive care. And despite bipartisan support to reform the system, as well as recent attempts by health insurance companies to ease the burden for patients and doctors, some tactics have met skepticism.<\/p>\n
Some insurers\u2019 efforts to improve prior authorization practices aren\u2019t as helpful as they would seem, said Judson Ivy, CEO of Ensemble Health Partners, a revenue cycle management company.<\/p>\n
\u201cWhen you really dive deep,\u201d he said, these improvements don\u2019t seem to touch the services and procedures, such as CT scans, that get caught up in prior authorization so frequently. \u201cWhen we started looking into it,\u201d he said, \u201cit was almost a PR stunt.\u201d<\/p>\n
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The \u2018Tipping Point\u2019<\/strong><\/p>\n When Arman Shahriar\u2019s father was diagnosed with follicular lymphoma in 2023, his father\u2019s oncologist ordered a whole-body PET scan to determine the cancer\u2019s stage. The scan was denied by a company called EviCore by Evernorth, a Cigna subsidiary that makes prior authorization decisions.<\/p>\n Shahriar, an internal medicine resident, said he spent hours on the phone with his father\u2019s insurer, arguing that the latest medical guidelines supported the scan. The imaging request was eventually approved. But his father\u2019s scan was delayed several weeks \u2014 and multiple appointments were scheduled, then canceled during the time-consuming process \u2014 while the family feared the cancer would continue to spread.<\/p>\n EviCore by Evernorth spokesperson Madeline Ziomek wrote in an emailed statement that incomplete clinical information provided by physicians is a leading cause of such denials. The company is \u201cactively developing new ways to make the submission process simpler and faster for physicians,\u201d Ziomek said.<\/p>\n In the meantime, Shahriar, who often struggles to navigate prior authorization for his patients, accused the confusing system of \u201cartificially creating problems in people\u2019s lives\u201d at the wrong time.<\/p>\n \u201cIf families with physicians are struggling through this, how do other people navigate it? And the short answer is, they can\u2019t,\u201d said Shahriar, who wrote about his father\u2019s case in an essay published last year<\/a> by JAMA Oncology. \u201cWe\u2019re kind of reaching a tipping point where we\u2019re realizing, collectively, something needs to be done.\u201d<\/p>\n The fatal shooting of UnitedHealthcare CEO Brian Thompson on a New York City sidewalk in December prompted an outpouring of grief among those who knew him, but it also became a platform for public outrage about the methods insurance companies use to deny treatment.<\/p>\n An Emerson College poll<\/a> conducted in mid-December found 41% of 18- to 29-year-olds thought the actions of Thompson\u2019s killer were at least somewhat acceptable. In a NORC survey<\/a> from the University of Chicago conducted in December, two-thirds of respondents indicated that insurance company profits, and their denials for health care coverage, contributed \u201ca great deal\/moderate amount\u201d to the killing. Instagram accounts established in support of Luigi Mangione, the 26-year-old Maryland suspect accused of murder and terrorism, have attracted thousands of followers.<\/p>\n \u201cThe past several weeks have further challenged us to even more intensely listen to the public narrative about our industry,\u201d Cigna Group CEO David Cordani said during an earnings call on Jan. 30<\/a>. Cigna is focused on \u201cmaking prior authorizations faster and simpler,\u201d he added.<\/p>\n The first Trump administration and the Biden administration put forth policies designed to improve prior authorization<\/a> for some patients by mandating that insurers set up electronic systems and shortening the time companies may take to issue decisions, among other fixes. Hundreds of House Democrats and Republicans signed on to co-sponsor a bill<\/a> last year that would establish new prior authorization rules for Medicare Advantage plans. In January, Republican congressman Jefferson Van Drew of New Jersey introduced a federal bill<\/a> to abolish the use of prior authorization altogether.<\/p>\n Meanwhile, many states have passed legislation to regulate the use of prior authorization. Some laws require insurers to publish data about prior authorization denials with the intention of making a confusing system more transparent. Reform bills are under consideration<\/a> by state legislatures in Hawaii, Montana, and elsewhere. A bill in Virginia approved by the governor March 18 takes effect July 1. Other states, including Texas, have established \u201cgold card<\/a>\u201d programs that ease prior authorization requirements for some physicians by allowing doctors with a track record of approvals to bypass the rules.<\/p>\n No one from AHIP, an insurance industry lobbying group formerly known as America\u2019s Health Insurance Plans, was available to be interviewed on the record about proposed prior authorization legislation for this article.<\/p>\n But changes wouldn\u2019t guarantee that the most vulnerable patients would be spared from future insurance denials or the complex appeals process set up by insurers. Some doctors and advocates for patients are skeptical that prior authorization can be fixed as long as insurers are accountable to shareholders.<\/p>\n Kindyl Boyer, director of advocacy for the nonprofit Infusion Access Foundation, remains hopeful the system can be improved but likened some efforts to playing \u201cWhac-A-Mole.\u201d Ultimately, insurance companies are \u201cgoing to find a different way to make more money,\u201d she said.<\/p>\n \u2018Unified Anger\u2019<\/strong><\/p>\n In the weeks following Thompson\u2019s killing, UnitedHealthcare was trying to refute an onslaught of what it called \u201chighly inaccurate and grossly misleading information\u201d about its practices when another incident landed the company back in the spotlight.<\/p>\n On Jan. 7, Elisabeth Potter, a breast reconstruction surgeon in Austin, Texas, posted a video<\/a> on social media criticizing the company for questioning whether one of her patients who had been diagnosed with breast cancer and was undergoing surgery that day needed to be admitted as an inpatient.<\/p>\n The video amassed millions of views.<\/p>\n In the days following her post, UnitedHealthcare hired a high-profile law firm to demand a correction and public apology from Potter. In an interview with KFF Health News, Potter would not discuss details about the dispute, but she stood by what she said in her original video.<\/p>\n \u201cI told the truth,\u201d Potter said.<\/p>\n The facts of the incident remain in dispute. But the level of attention it received online illustrates how frustrated and vocal many people have become about insurance company tactics since Thompson\u2019s killing, said Matthew Zachary, a former cancer patient and the host of \u201cOut of Patients,\u201d a podcast that aims to amplify the experiences of patients.<\/p>\n For years, doctors and patients have taken to social media to shame health insurers<\/a> into approving treatment. But in recent months, Zachary said, \u201chorror stories\u201d about prior authorization shared widely online have created \u201cunified anger.\u201d<\/p>\n \u201cMost people thought they were alone in the victimization,\u201d Zachary said. \u201cNow they know they\u2019re not.\u201d<\/p>\n Data published in January by KFF found that prior authorization is particularly burdensome for patients covered by Medicare Advantage plans. In 2023, virtually all Medicare Advantage enrollees were covered by plans that required prior authorization, while people enrolled in traditional Medicare were much less likely to encounter it, said Jeannie Fuglesten Biniek, an associate director at KFF\u2019s Program on Medicare Policy. Furthermore, she said, Medicare Advantage enrollees were more likely to face prior authorization for higher-cost services, including inpatient hospital stays, skilled nursing facility stays, and chemotherapy.<\/p>\n But Neil Parikh, national chief medical officer for medical management at UnitedHealthcare, explained prior authorization rules apply to fewer than 2% of the claims the company pays. He added that \u201c99% of the time\u201d UnitedHealthcare members don\u2019t need prior authorization or requests are approved \u201cvery, very quickly.\u201d<\/p>\n Recently, he said, a team at UnitedHealthcare was reviewing a prior authorization request for an orthopedic procedure when they discovered the surgeon planned to operate on the wrong side of the patient\u2019s body. UnitedHealthcare caught the mistake in time, he recounted.<\/p>\n \u201cThis is a real-life example of why prior authorization can really help,\u201d Parikh said.<\/p>\n Even so, he said, UnitedHealthcare aims to make the process less burdensome by removing prior authorization requirements for some services, rendering instant decisions for certain requests, and establishing a national gold card program<\/a>, among other refinements. Cigna also announced changes<\/a> designed to improve prior authorization in the months since Thompson\u2019s killing.<\/p>\n \u201cBrian was an incredible friend and colleague to many, many of us, and we are deeply saddened by his passing,\u201d Parikh said. \u201cIt\u2019s truly a sad occasion.\u201d<\/p>\n The Final Denial<\/strong><\/p>\n During the summer of 2023, Ekirch was working full time and preparing to take the bar exam when she noticed numbness and tingling in her arms and legs. Eventually, she started experiencing a burning sensation throughout her body.<\/p>\n That fall, a Richmond-area neurologist said her symptoms were consistent with small fiber neuropathy, and, in early 2024, a rheumatologist recommended IVIG to ease her pain. Since then, other specialists, including neurologists at the University of Virginia and Virginia Commonwealth University, have said she may benefit from the same treatment.<\/p>\n There\u2019s no guarantee it will work. A randomized controlled trial published in 2021<\/a> found pain levels in patients who received IVIG weren\u2019t significantly different from the placebo group, while an older study<\/a> found patients responded \u201cremarkably well.\u201d<\/p>\n \u201cIt\u2019s hard because I look at my peers from law school and high school \u2014 they\u2019re having families, excelling in their career, living their life. And most days I am just struggling, just to get out of bed,\u201d said Ekirch, frustrated that Anthem continues to deny her claim.<\/p>\n In a prepared statement, Kersha Cartwright, a spokesperson for Anthem\u2019s parent company, Elevance Health, said Ekirch\u2019s request for IVIG treatment was denied \u201cbecause it did not meet the established medical criteria for effectiveness in treating small fiber neuropathy.\u201d<\/p>\n On Feb. 17, her treatment was denied by Anthem for the final time. Ekirch said her patient advocate, a nurse who works for Anthem, suggested she reach out to the drug manufacturer about patient charity programs.<\/p>\n \u201cThis is absolutely crazy,\u201d Ekirch said. \u201cThis is someone from Anthem telling me to plead with a pharmacy company to give me this drug when Anthem should be covering it.\u201d<\/p>\n Her only hope now lies with the Virginia State Corporation Commission Bureau of Insurance, a state agency that resolves prior authorization disputes between patients and health insurance companies. She found out through a Facebook group for patients with small fiber neuropathy that the Bureau of Insurance has overturned an IVIG denial before. In late March, Ekirch was anxiously waiting to hear the agency\u2019s decision about her case.<\/p>\n \u201cI don\u2019t want to get my hopes up too much, though,\u201d she said. \u201cI feel like this entire process, I\u2019ve been let down by it.\u201d<\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\n![](\"http:\/\/shapegreatness.org\/wp-content\/uploads\/2025\/03\/Ekirch_13-resized-scaled.jpg\")
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