Cambrie has epilepsy and has spent years trying nearly every available medication to control her seizures. When none worked, the care team at her children’s hospital recommended a neuromodulator—a surgical device commonly used when medications fail, even in young children.

Her surgery was scheduled for October 28. Just four days earlier, Cambrie’s family received devastating news: Anthem denied the procedure because Cambrie was not yet 18.

The denial came as a shock. In preparation for surgery, Cambrie had already undergone a head CT and a sedated MRI—tests Anthem had approved and paid for. Her neurologist and neurosurgeon both confirmed the surgery was medically appropriate and routinely performed on pediatric patients, including children much younger than Cambrie.

Still, Anthem said no.

Her doctors appealed the decision. Denied.
Her family filed an internal appeal. Denied.
They filed an external appeal. Denied again.

With no appeals left and no ability to change insurance through her father’s employer, Cambrie’s seizures continued while her family was left without options.

Out of desperation, Cambrie’s mother contacted NBC Nightly News. Months later, as NBC prepared to publish a story, Anthem requested a HIPAA release so it could comment on Cambrie’s case. Three days after the release was submitted, Anthem overturned the denial—despite no appeals being in progress.

As Cambrie’s mother put it, “Care didn’t get approved because it suddenly became necessary—it got approved because people started paying attention.”

Cambrie’s surgery is now scheduled, but the months‑long delay means critical imaging must be repeated before doctors can proceed. During the seven months Anthem denied care, Cambrie experienced two to four seizures every day. Those months of uncontrolled seizures carry potential long‑term effects on her development and health—effects her doctors say could have been avoided had care been approved when it was first recommended.

Cambrie’s story raises a troubling question: What happens to patients who don’t have the means or visibility to challenge an insurance company’s decision?

In the summer of 2023, Jason—who is immunocompromised—contracted COVID for the first time while traveling in Alaska. He had stayed fully up to date on every recommended vaccine and booster, and when he tested positive, his care team immediately prescribed Paxlovid to prevent severe illness.

The treatment worked at first, but then came a rebound infection. Weeks passed, symptoms slowly faded, yet one thing didn’t: Jason could not get a negative COVID test.

Months later, still testing positive, his clinicians referred him to an infectious disease specialist. After reviewing research showing that IVIG treatments had helped immunocompromised patients finally clear the virus, the specialist determined Jason was a strong candidate.

His insurance denied the treatment.

With support from his care team, Jason appealed.

First appeal: denied. Additional documentation: denied again.

Unable to access the only known treatment option, Jason tried to continue daily life while knowing the virus remained inside him. He wasn’t contagious, but the fear lingered—especially the possibility that the virus could be mutating internally.

Meanwhile, long COVID symptoms worsened. His physical stamina dropped sharply. A neurologist at Harvard Medical evaluated his case and attempted once more to secure approval for IVIG.

Denied again.

The neurologist told him he treats only immunocompromised patients—and had never seen anyone test positive for COVID for as long as Jason has.

Financial strain added another layer. With ongoing medical expenses, paying out of pocket for IVIG was impossible. Jason had paid into his health plan for years, yet when a medically supported treatment was needed, insurance refused to cover it.

By July, it will mark three years since his first infection. He expects he will still be testing positive. The debilitating fatigue continues to shape daily life. There are no long COVID clinics in his area, and the only treatment option identified by specialists has been repeatedly denied.

“It’s disheartening that you pay hard‑earned money into your health care plan, month after month, year after year, but when you need it most, they won’t step up to the plate when a potential solution to a medical situation is presented,” Jason says.

In August 2023, Rachel’s 10‑month‑old son, Myles, needed a medically necessary pediatric surgery. Living in Northwest Indiana, the closest specialist was in Chicago. Before anything was scheduled, United Healthcare—Myles' insurance at the time—issued written pre‑approval for the procedure. Rachel, the pediatrician, and the surgeon all received copies confirming it was authorized. Their pediatrician also warned that without the surgery, Myles faced a significantly higher risk of serious health problems later in life, including cancer.

The surgery went well, but just days later, Rachel learned that United Healthcare had denied the claim. Despite their own approval letter, they began giving shifting explanations: out of network, wrong approval code, not the primary insurance, no authorization on file. At one point, they even denied anesthesia charges, calling them “not medically necessary” for an infant’s surgery.

For ten months, Rachel appealed every denial.

First appeal: denied.

Second appeal: denied.

Final appeal—with letters from multiple physicians—denied again.

All while working full time, caring for her older child, and preparing for Myles' second surgery. Every doctor involved tried to help, but United continued to refuse payment.

By March 2024, out of options, Rachel contacted an attorney. Only then did United Healthcare suddenly reverse course, calling the denial a “mistake.” The $50,000 claim was dropped, and Rachel paid only a small out‑of‑pocket amount.

Myles is now three and a half—healthy, thriving, and full of energy. But the emotional toll of the fight still stays with Rachel.

“They take advantage of people when they’re vulnerable,” she says. “We did everything right. This was medically necessary. No family should have to go through this.”

Her message to others facing insurance denials:

“Don’t give up. Just keep fighting.”

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