(CNN)Cara Pressman sobbed in the large red chair in her living area. The 15-year-old tried to absorb the news relayed by her parents: that she was, denied by their insurance company, Aetna for a minimally invasive brain surgery that could end.
“When my parents told me, I moved kind of blank and began crying,” she said. “I cried for like an hour.”
Her friends had been lined up to see her in the hospital for the operation three days off, on Monday, October 23. She texted them which the entire thing was away.
It had been presumed to be a joyous weekend. Cara’s grandparents had come to town to celebrate their 90th birthdays, a jubilant party with over 100 relatives and friends crowding her home. The celebration did go on with stress.
Cara had several complex partial seizures that weekend. When the seizures hit, her body becomes chilly and shakes, and she stands out for anywhere from 20 minutes to 2 minutes, typically still conscious of her environment. By exerting herself — almost anything, her seizures can be triggered by anxiety, by being happy. “It’s like having a nightmare but while you’re awake,” she said.
In the six months since the denial, Cara has had over two dozen seizures impacting her everyday life. Her message to Aetna is blunt: “Considering they are denying me getting operation and quitting this thing that is wrong with my brain, I’d probably just say, ‘Screw you.’ ”
Aetna: We’re searching for what is best for patients
The Pressman loved ones and, individually, Jennifer Rittereiser, a 44-year-old mom who has fought with seizures since she was 10, approached CNN in recent weeks after they were both refused, by Aetna, for laser ablation surgery, a minimally invasive procedure in which a thin laser is utilized to heat and destroy lesions in the brain where the seizures are originating.Aetna is your third-largest medical insurance provider in the country, providing medical care to 23.1 million people.
Neurologists consider laser ablation, which is performed through a little hole in the skull, to be more powerful and more precise than traditional brain surgery, where the top portion of the skull is eliminated in order for doctors to function. The procedure is less daunting for the individual and parents who make choices for their kids: No one likes the concept of a skull opened along with a chunk of brain eliminated.
In denying Cara her operation, Aetna said it considers laser ablation operation “experimental and investigational for the treatment of epilepsy since the efficacy of the approach has not been established.”
“Clinical studies haven’t proven that this procedures effective for treatment of this member’s condition,” Aetna composed in its rejection letter.
The insurance company did approve her for the more invasive and more expensive open brain surgery, called a temporal lobectomy, even though her healthcare staff never sought approval for the procedure.
The laser operation is approved by the Food and Drug Administration and is widely known within the epilepsy community as an effective treatment alternative to open brain surgery, particularly when the place of seizure action could be pinpointed to a particular part of the brain.
Dr. Jamie Van Gompel, a neurosurgeon at the Mayo Clinic, disputes Aetna’s assessment. He is not engaged in the maintenance of Cara nor the treatment of Rittereiser, but he said Aetna’s assessment is wrong.
“that I would not call it experimental in any way,” said Van Gompel, who is directing a clinical trial on the operation at Mayo as part of a larger national study. “It’s definitely not an experimental procedure. There have been thousands of patients. It’s FDA-approved. There’s a whole lot of information out there to indicate it’s powerful for epilepsy.”
Van Gompel said a temporal lobectomy carries a much higher risk of severe complications, including the chance of death. “it is a big jump to go to a large invasive procedure,” he said.
Recovery time after open brain surgery can range from six to 12 weeks. By contrast can return to work or at school in under two weeks. The pain from laser operation is much less, and extreme headaches are fewer than with open brain surgery, Van Gompel said.
Whilst laser ablation has not yet undergone large randomized controlled trials, Van Gompel said present data shows it’s powerful over 50% of their moment. He expects the current trial will show a success rate of 60 percent to 70 percent or even better in epilepsy patients. Lobectomies that are temporalhave a speed, of over 70%.
Pressed by CNN for a better explanation on its denial, Aetna stood with its rejection for Cara and Rittereiser, stating it had been in the best interest of their patients. But the speech has been softened slightly.
“Clinical efficacy and also our members’ safety are the primary criteria we use in determining if or not a treatment or service is medically necessary,” Aetna said. “There is currently a limited amount of evidence-based, clinical trials associated with laser ablation operation. Just studies with a number of participants have been utilized to report the efficacy of the procedure as noted by the Epilepsy Foundation. We always evaluate any new studies or additional evidence when developing our medical policy bulletins, and will keep doing so for this procedure.”
Contacted for reaction, the Epilepsy Foundation
strongly objected to Aetna’s remarks, saying the insurance company took its information out of context. Laser ablation operation “has surfaced as a new minimally invasive surgical option that is most suitable for individuals with symptomatic localization-related epilepsy,” said Dr. Jacqueline French, the chief science officer with the Epilepsy Foundation.
“This technology is much less invasive than the other, which entails removing a sizeable piece of brain, at a substantially higher monetary and personal price,” French said. “This route should be available, if the treating epilepsy doctor has recommended it, without delay or obstacles.”
Phil Gattone, both the president and CEO of the Epilepsy Foundation, stated insurance denials and other obstacles to treatment are becoming a common struggle for tens of thousands of Americans with seizure disorders.
Gattone knows firsthand the pain of what Cara’s parents are going through. His own son started having seizures when he was 4 and underwent brain surgery in the early 1990s. “It was really challenging for our loved ones to create a choice to remove a portion of our child’s skull and brain for a operation that we expected would stop the devastation of seizures which were quitting his development,” Gattone said. “We took this leap of faith and decided, and it worked out the very best for him personally.”
However he added that he and his wife wanted laser ablation operation was available back then. The apparatus used for laser ablation operation was approved by the FDA . “I know that my wife and I would’ve found a great deal more comfort if we had had (laser ablation) as an option,” he said.
Gattone said people with seizures, their caregivers and their doctors shouldn’t be “spending significant moment in the midst of a health-care crisis, filing paperwork, and making appeals or otherwise going through the movements of administrative paperwork” trying to get approval for a life-changing operation.
“The Epilepsy Foundation can understand no reason why an insurance company would place any obstacle to delay a remedy that may save an individual’s life, promote the growth of the young child’s brain or bring about pest control,” Gattone said.
Mom who crashed with child in car becomes denied
Jennifer Rittereiser lost awareness behind the wheel of her silver SUV when driving with her 7-year-old son, Robert, in April. Her SUV struck it again until veering into oncoming traffic and rammed into a vehicle. Her vehicle flipped over careened down an embankment and came to rest on its side amid a tangle of brush. She narrowly missed slamming to a guardrail and many trees.
Mom and son somehow managed to walk free unharmed.
“People were astonished,” she said. “They had a helicopter on the road, really. I’m extremely fortunate only from that sense.”
Rittereiser has fought seizures since she was 10 and has been able to function with a range of drugs in the 3 decades since. If the seizures might come for much of her life, she can tell.
These weren’t like the seizures depicted in Hollywood films; she would not fall to the floor and writhe. She would zone out for a spell. She may function and could understand people but couldn’t talk back — or when she did, her words were garbled.
As an executive in the healthcare business, Rittereiser has fallen asleep during encounters. She rushes to the bathroom to hide till they go away when she feels a seizure coming. 1 time, she states she urinated on herself at her desk.
Rittereiser had a crash in 2014 in which she rear-ended a car after she had a seizure. She stopped driving for over a year, although no one has been hurt in that crash. Her medications were substituted, that April and her seizures were mostly kept in check.
She was shortly assessed by a range of doctors and recommended for laser ablation operation. After 34 years of fighting with seizures, she believed her ordeal could come to a conclusion. Surgery has been set for June 16.
But in late May, Aetna refused the operation. She fought the decision of Aetna through a lengthy appeals process. Aetna refused to budge.
“It’s simply not right,” Rittereiser said.
She stated she recently went to Aetna’s website to look up the organization’s values. She felt nauseated. “Everything in their own core values isn’t being exhibited in how I’m being treated. They are talking about promoting health and health and ‘being by your side.’ ”
She paused, contemplating the business’s “from the side” catchphrase, stating it’s “the most absurd thing, since they’re the biggest barrier to my success and my own well-being moving ahead.
“It drives me crazy.”
Dad: ‘You get so angry’
Julie Pressman stood near an elevator at her doctor’s office when word came that Cara’s operation was denied. The mom fell to the floor and cried.
She called Cara’s father, Robert. He had been at the airport picking up his 90-year-old parents for their birthday celebration. Dad and mom rallied for their daughter and accumulated power to break the news. That’s when Cara sat in the chair that is red, crying.
“Telling Cara was horrible,” her mom said. “Horrible.”
“It’s just so frustrating for us to know there’s a solution on the market — a method to repair our kid — and a few bureaucratic machine is preventing this from occurring,” Robert Pressman said. “You get really angry, but you don’t know who to take it out on, since there’s no specific person that is doing it. It’s this large bureaucracy that is preventing this from occurring.”
Julie and Robert stated the most amazing day of the lives came on August 20, 2002, when Cara slipped into the entire world and met her 2-year-old sister, Lindsey, for the first time. “That was the day we became a household,” Julie said. “Our love for those girls is amazing. How we got this blessed is past us.”
But that fortune was tested. She’d complained and then in the middle of the night, she started seizing, when Cara was 9. The household had two black Labradors who had gone to her room and barked to alarm her parents. Cara had bitten her tongue, when they got to the area and her face was running down.
It was a frightening spectacle. She underwent a battery of tests and had been hurried off in an ambulance. Cara, Dad and mom never believed they’d still be battling seizures let alone an insurance company. She’s had seizures on the football field, on stage, during softball games in the classroom, during plays. Almost everywhere.
How can she envision a life without seizures?
“I really don’t know,” she said. “I have never had a life without seizures.”
“You will. You will,” her daddy told her.
“that I simply don’t know when,” she responded.
Mom: “It’ll occur, kiddo.”
Her mother calls Cara a feisty, petite powerhouse with large marble eyes and long eyelashes and a humorous wit to match. She is a naturally talented athlete, singer and dancer, but her parents believe that her seizures have kept her from reaching her potential.
See the latest news and share your opinions with CNN Health on Facebook and Twitter.
They long for the day when the seizures are gone. The parents said they have paid $24,000 for insurance with Aetna this year. They are determined to get Cara laser ablation operation with or without the insurance firm’s help. They’ll appeal the latest rejection of Aetna — but they are not optimistic.
In preparation, they have started exploring raiding their retirement funds to cover the $300,000 out of pocket. “Cara is worth every cent, but man,” her mom said. ” ‘Screw Aetna,’ indeed, to quote my child.”
Read more: http://edition.cnn.com/