HAZEL DELL, ILLINOIS — Anthem Blue Cross Blue Shield reversed its denial and approved deep brain stimulation for 13-year-old Cambrie Sharp of Hazel Dell, Illinois, three days after being contacted by a media outlet. The insurer later updated its coverage policy to include the procedure for certain pediatric cases.

Cambrie Sharp has uncontrolled seizures due to epilepsy and has tried more than 20 anti-seizure medications over eight years, including multiple benzodiazepines and phenobarbital. According to her mother, Brandi Sharp, medications that typically work for children do not work for Cambrie and cause rebound seizures. Sharp said Cambrie’s neurologist explained that her epilepsy adapts, and so her brain waves adapt.

Cambrie was born at 27 weeks gestation and was healthy until age 4, when she had her first seizure. By age 6, she was experiencing several major seizures a day. For more than a year, she was incontinent and lost the ability to speak. At age 7, after three weeks of nonstop seizures, she was hospitalized and placed in a medically induced coma. That same year, doctors performed a corpus callosotomy and implanted a vagus nerve stimulation device, which initially reduced her seizures. Six years later, she is again experiencing multiple seizures daily.

Doctors at WashU Medicine in St. Louis recommended deep brain stimulation, a procedure involving an implant in the chest that sends electrical impulses directly to electrodes in seizure-generating areas of the brain. Last fall, Anthem Blue Cross Blue Shield denied coverage because the procedure is not FDA-approved for pediatric patients, and an appeal from her doctors was also denied. The treatment can cost up to $100,000.

Dr. Réjean Guerriero, a pediatric epileptologist at WashU Medicine treating Cambrie Sharp, stated, “The medical literature and our own clinical experience also show that in pediatric patients with treatment-resistant epilepsy, [deep brain stimulation] can reduce seizure frequency and improve quality of life.” Dr. Neena Marupudi, a pediatric neurosurgeon at University of Michigan Health C.S. Mott Children’s Hospital, noted that FDA approval is typically based on adult clinical trials and that lack of pediatric approval does not mean a treatment is ineffective for children. “It’s a very sad thing when an insurance company just rejects it,” Marupudi said.

Anthem Blue Cross Blue Shield stated, “We had not received all the patient’s medical information. Once we received that information demonstrating that her treatment options are limited, we approved the deep brain stimulation treatment.” Several weeks later, the insurer announced a broader policy change. “We are constantly reviewing our medical coverage policies to keep pace with the latest treatment standards and expert recommendations. After reviewing new clinical information, we have updated our deep brain stimulation policy,” the company said. Brandi Sharp said, “She’ll have a seizure and she’ll say, ‘I wish they would find a way to fix this.’”