By Consumers for Quality Care, on December 12, 2017
Cara Pressman, a 15-year-old with epilepsy, has some tough words for her insurance company after it denied her coverage of a minimally invasive brain surgery. One day when Cara was 9, she incessantly complained of a severe headache. That night Cara had her first seizure. When her parents came to her room she was covered in blood from biting her tongue. Over half a decade later, the Pressman’s are still battling Cara’s seizures; and now their insurer.
In the six weeks since the denial, Cara has had more than two dozen seizures affecting her everyday life. Her message to Aetna is blunt: “Considering they’re denying me getting surgery and stopping this thing that’s wrong with my brain, I would probably just say, ‘Screw you.’ ”
The procedure Cara’s doctors have recommended targets lesions in the brain where the seizures originate. The Pressman family hopes the procedure would give Cara a new lease on life. But days before the scheduled surgery, Aetna told Cara that it would not cover the treatment. According to CNN:
Neurologists consider laser ablation, which is performed through a small hole in the skull, to be safer and more precise than traditional brain surgery, where the top portion of the skull is removed in order for doctors to operate. The procedure is less daunting for the patient and parents who make decisions for their children: No one likes the idea of a skull opened and a chunk of brain removed.
Aetna denied the treatment, which it considers “experimental or investigational.” However, the treatment is approved by the FDA and the device has been approved for almost a decade. Experts say that Aetna’s assessment is incorrect:
“I would not call it experimental at all,” said Van Gompel, who is leading a clinical trial on the surgery at Mayo as part of a larger national study. “It’s definitely not an experimental procedure. There’ve been thousands of patients treated with it. It’s FDA-approved. There’s a lot of data out there to suggest it’s effective for epilepsy.”
The Epilepsy Foundation objected to Aetna’s decision as well, saying the insurer took the information on the procedure out of context. The foundation said that when the treatment is available and appropriate, it should be made available without delays or barriers. Unfortunately, “insurance denials and other barriers to treatment have become a common battle for thousands of Americans with seizure disorders,” according to the foundation.
Phil Gattone, President and CEO of the Epilepsy Foundation, highlighted what these denials can mean for patients and their families.
[P]eople with seizures, their caregivers and their doctors should not be “spending critical time in the midst of a health-care crisis, filing paperwork, making appeals or otherwise going through the motions of administrative paperwork” trying to get approval for a life-changing operation.
When Cara’s laser ablation was denied, Aetna approved a more invasive temporal lobectomy, which her team did not request approval for. Van Gompel says that the approved procedure carries much larger risks, including the possibility of serious complications and death. A temporal lobectomy has a recovery time of 6-12 weeks, exponentially higher than the 2-week recovery from the laser treatment. Aetna defended its decision to CNN.
Cara’s parents are preparing to pay the $300,000 out of pocket costs for the laser ablation surgery. They have appealed Aetna’s decision, but are not hopeful.