A 15-year-old is speaking out against an insurance company after she was denied coverage for a minimally invasive surgery that would have saved her from a lifetime of seizures.
Cara Pressman, from New York, suffers through nightmarish epileptic episodes several times a week, helplessly shaking and unable to communicate for up to two minutes.
Her doctors recommended a laser ablation to remove lesions in her brain that are causing her epilepsy, but the family’s insurance provider Aetna told Cara’s parents, Julianne and Robert, of New York, that the surgery was still ‘experimental.’
‘Considering they’re denying me getting surgery and stopping this thing that’s wrong with my brain, I would probably just say, “Screw you,”‘ Cara told CNN.
Cara Pressman, 15, was denied coverage for a minimally invasive procedure to stop her frequent seizures by insurance provider, Aetna
The alternative to laser ablation is a major open brain operation that would require surgeons to crack open Cara’s skull and cut out a portion of her temporal lobe.
About three million people in the US suffer of epilepsy of some form. The disease’s name describes a range of seizure disorders of varying severity, but about one third of people with the disorder are debilitated by uncontrollable, untreatable seizures.
Cara is one of those million people, or at least she thought she would be until her doctors scheduled her for a laser ablation surgery in New York on October 23.
Cara’s form of epilepsy, her doctors believe, is caused by areas of damaged tissue in her brain. The areas, called lesions, may have developed on their own, or as a result of trauma or tumors.
Removing them could well free Cara from her terrifying bouts of cold, shaking seizures.
But just three days before her operation was to take place, her parents, Julianne and Robert got a letter from the family’s insurance company, Aetna.
The company refused to cover Cara’s operation, a devastating blow to the hopeful teen and her family.
Instead of removing a larger portion of her skull and cutting away brain matter in the procedure the company would cover, a laser ablation would have allowed surgeons to drill a small hole in to Cara’s head, and finely target the lesions with a laser to remove them.
Aetna, considers the ablation procedure ‘experimental and investigational for the treatment of epilepsy because the effectiveness of this approach has not been established,’ according to its website.
‘It is never easy to tell an individual or family that a treatment or procedure is not approved,’ Aetna said in a statement to Daily Mail Online. ‘However, effectiveness and member safety will always be the most important factors in determining our clinical policies.’
The company said that it had conducted an ‘extensive review,’ and that the approved lobectomy ‘is supported by a larger body of evidence.’
The US Food and Drug Administration approved the first system for laser ablation in the brain in 2010.
Results of studies of the laser surgery are mixed, but promising. Some studies have shown that it is 75 percent effective at treating seizure disorders that don’t respond to medications, like Cara’s.
Cara (left) and her mother, Julianne, were devastated to find out that their insurance would not cover a simple procedure for the teen’s seizures
The so-called ‘golden standard’ for medical trials involves randomly assigning half of the participants to have the new procedure, and half to get a placebo procedure, in order to test its effectiveness without bias.
So far, none of the completed trials for laser ablation have been done by this method, though one is in progress through May Clinic.
But The Epilepsy Foundation’s chief scientist, Dr Jaqueline French says that ‘most surgical techniques, even common ones, have not been subjected to standard placebo-controlled trials, as [surgical trials] are much more complex for a number of reasons.’
On the other hand, temporal lobectomies provide good results for about 85 percent of patients, while between 10 and 15 percent have little to no improvement.
The results are good, and the incidence of complications is low, but if something does go wrong, a patient’s peripheral vision, speech and language capabilities could be impaired.
Phil Gattone, CEO of The Epilepsy Foundation said in a statement: ‘As a parent with a very young child, it was extremely challenging for our family to make a decision to remove part of our child’s skull and brain for a surgery that we hoped would end the devastation of seizures that were stopping his development,’ he said.
Ultimately, his son’s surgery was a success, but Gattone added that the foundation has seen that epilepsy patients and their families ‘are facing more barriers to physician-directed care.’
Dr French says that, compared to laser ablation, a lobectomy can come at ‘a substantially higher monetary and personal cost.’