Insurer reverses denial for Illinois girl’s seizure surgery after NBC inquiry

Cambrie Sharp spent years living with seizures that struck without warning, sometimes as many as four times a day, while her family waited for an answer that could change her life. The 13-year-old Illinois girl has had daily, uncontrolled seizures since she was 6, and the surgery her doctor recommended was initially denied by her insurer. Days after the case drew outside attention, the company reversed course.

The decision mattered because Cambrie’s seizures were not occasional setbacks but a constant part of daily life. Doctors had recommended surgery because medication had not brought her epilepsy under control, a situation that can make surgery part of the treatment conversation for children with refractory epilepsy. The Epilepsy Foundation says children with drug-resistant focal epilepsy have less than a 5% to 10% chance of becoming seizure-free after two antiseizure medications at optimal dosing. Johns Hopkins Medicine says pediatric epilepsy surgery may be appropriate when seizures are frequent, uncontrollable and not managed by medication or diet.

Cambrie’s case also highlights how fragile access to care can be when an insurer’s policy lags behind medical judgment. Several weeks after the case was brought to Anthem Blue Cross Blue Shield’s attention, the insurer changed its policy to include coverage of deep brain stimulation for certain children. Anthem’s current medical policy says deep brain stimulation and related stimulation technologies are used for seizure and other neurological disorders, and its provider guidance says coverage depends on the terms of the applicable benefit plan. It also says medical policies can change as technology evolves.

For families like Cambrie’s, that means the difference between treatment and delay may come down not only to a physician’s recommendation, but to the timing of an insurer’s policy update and the pressure generated by appeals or public scrutiny. In a child having seizures every day, that delay is not abstract. It can shape safety, learning, sleep and the long wait for relief that medicine alone has not provided.