Cara Pressman, a 15-year-old who has suffered from seizures since she was 9, received devastating news. Her parents informed her that Aetna, their medical insurance company, had denied her request for a minimally invasive brain surgery that could treat her condition, which was scheduled to take place three days after the denial was issued.
After receiving the news, Pressman attempted to enjoy her weekend, which included her grandparents 90th birthday celebrations. But, throughout the two days, Pressman experienced multiple complex partial seizures, which can be triggered by anything from stress to happiness to exertion.
When Pressman has a seizure, she often gets cold and shakes. She also zones out for periods ranging from 20 seconds to two minutes, though is usually aware of her surroundings.
“It’s like having a nightmare but while you’re awake,” said Pressman.
Since being denied the surgery nearly six weeks ago, Pressman has experienced over two dozens seizures.
She had a simple message for Aetna: “Considering they’re denying me getting surgery and stopping this thing that’s wrong with my brain, I would probably just say, ‘Screw you.’”
Pressman and another Aetna customer, 44-year-old Jennifer Rittereiser, who has experienced seizures since she was 10, were both denied laser ablation surgery by Aetna.
Laser ablation surgery is considered minimally invasive, only requiring a small hole in the skull for the laser to reach and destroy the lesions that cause the seizures. The approach is considered much safer than traditional brain surgery by neurologists.
Aetna considers laser ablation surgery “experimental and investigational for the treatment of epilepsy because the effectiveness of this approach has not been established,” even though the device used in the procedure is approved by the Food and Drug Administration (FDA).
In a letter, Aetna wrote, “Clinical studies have not proven that this procedure is effective for treatment of the member’s condition.”
Aetna did approve for Pressman to have a temporal lobectomy, the more invasive, and more expensive, open brain surgery, even though such approval was never sought by Pressman’s medical team.
When pressed by CNN for a better explanation of the denial, Aetna cited statements by the Epilepsy Foundation which showed only small studies had been completed to determine the effectiveness by laser ablation surgery, though the Epilepsy Foundation says their data was used out of context.
According to the Epilepsy Foundation’s chief science officer, Dr. Jacqueline French, the procedure “has emerged as a new minimally invasive surgical option that is best suited for patients with symptomatic localization-related epilepsy.”
French also asserts that “this path should be available, if the treating epilepsy physician has recommended it, without delay or barriers.”
Pressman’s parents intend to appeal Aetna’s decision, though are also exploring options to fund the $300,000 surgery themselves, including raiding their retirement savings.