• Posted February 19, 2025

Denied by Insurance? Why Fighting Back Sometimes Works

After three years, $40,000 in medical bills and five insurance denials, April and Justin Beck finally won their battle to get life-changing treatment for their 9-year-old daughter, Emily.

Emily, once an energetic kindergartner in Georgia, began experiencing severe behavior issues after battling COVID in 2021.

Known for her love of reading and keeping her classmates in line, Emily began having panic attacks, meltdowns and fits of rage that left her unable to sleep or focus. 

“It was like setting my kid on fire,” April Beck told The Wall Street Journal.

Emily woke in the night, moaning and shaking. She couldn’t sit still. Her handwriting deteriorated, according to the report.

Doctors eventually diagnosed Emily with a rare condition called pediatric acute-onset neuropsychiatric syndrome (PANS), in which the immune system attacks the brain after an infection.

Her symptoms flared with every cold or virus, making everyday life a struggle.

Antibiotics and steroids provided temporary relief, but the family soon realized Emily needed specialized care. 

“She’s been on antibiotics for two years,” her mother told The Wall Street Journal.

After a long search, and a nine-hour drive, they found Dr. Aravindhan Veerapandiyan, a PANS specialist at Arkansas Children’s Hospital.

Known to his young patients as "Dr. Panda," he prescribed immunoglobulin therapy (IVIG) for Emily. IVIG delivers antibodies from human plasma to calm an overactive immune system.

In a study published in the Journal of Child and Adolescent Psychopharmacology in 2021, IVIG was shown to improve symptoms by over 50% in kids with moderate to severe PANS.

April Beck said she felt her prayers had been answered.

But her relief was short-lived. The Becks' insurer, UnitedHealthcare, denied coverage, claiming IVIG "wasn’t medically necessary."

Over the next few months, the Becks faced five denials, each citing different reasons — among them, use of an out-of-network pharmacy. The cheapest provider they could find told them the infusions would cost $36,000 out-of-pocket.

“The services are not eligible for coverage because your plan doesn’t cover unproven procedures,” UnitedHealthcare said.

Even Veerapandiyan couldn’t move the insurance company. 

Determined to get her daughter the treatment she needed, April Beck turned to Claimable, a company that uses artificial intelligence (AI) to help families appeal insurance denials.

In December, the Becks filed an appeal to UnitedHealthcare, copying Andrew Witty, CEO of its parent company, as well as Georgia’s governor and attorney general. 

The appeal included a letter in support of the claim from the PANS Research Consortium. 

The consortium pointed out that immunoglobulin therapy is widely accepted as standard treatment for kids like Emily and that 13 states have made it illegal to impede access to it for people with PANS/PANDAS. The letter, cited 25 studies backing the treatment. Doctors from the National Institutes of Health and Stanford University cosigned it.

Two days before Christmas, UnitedHealthcare reversed its decision.

Emily received her first IVIG infusion late last month.

“We get these glimpses of her -- who she is and who she should be,” April Beck said. “That’s what keeps us fighting.”

The Becks had already spent $20,000 out-of-pocket in 2023 for Emily’s care, amassed $6,000 in medical debt and even launched a GoFundMe campaign to cover costs.

“This has been the battle thus far,” April told The Wall Street Journal. “This could just be the beginning.” 

The Becks' story is not unique. Health insurers process more than 5 billion claims annually and deny about 850 million of them, according to data from nonprofit KFF and the U.S. Centers for Medicare and Medicaid Services (CMS).

Less than 1% of patients appeal.

“Because a lot of people won’t appeal, won’t call, don’t have the knowledge to sit on the phone -- a lot of those go away,” said Dr. Ezekiel Emanuel, an oncologist and medical ethicist at the University of Pennsylvania. 

More information

HealthCare.gov has more on how to appeal an insurance company decision.

SOURCE: The Wall Street Journal, media report, Feb. 12, 2025; Journal of Child and Adolescent Psychopharmacology, March 15, 2021