See Cara celebrate her Sweet 16

After being denied coverage for a surgery to stop her chronic seizures, Cara Pressman finally received the procedure and is moving on with her life.

Posted: Aug. 24, 2018 7:15 AM
Updated: Aug. 24, 2018 7:15 AM

Cara Pressman raises her hands in triumph. The crowd claps in unison, and a DJ cranks up the music. The banquet hall on the banks of the Hudson pulsates as nine of Cara's best friends lead a procession to the dance floor.

It's the start of her Sweet 16 birthday party -- a celebration not just of her big day but of all that has happened in the past year. A way for friends and family to express their love.

Cara became a viral sensation months ago after the teen with a seizure disorder delivered a blunt message to her insurer. Her two words for Aetna -- "screw you" -- expressed the anger she felt at being denied a minimally invasive brain surgery that promised to end her seizures.

Her story, first told by CNN in December, triggered a massive uproar, and Aetna eventually approved the procedure.

This Saturday evening, amid the cheers of her closest friends, Cara radiates on stage beneath strings of white flashing lights. Then someone shouts, and the dance floor clears. Everyone rushes outside.

It's as if Mother Nature has joined the party: A rainbow stretches from the Hudson River high into the heavens.

Cara launches her head back and strikes an array of poses as people take photos.

"That's what's important in life -- miracles, right?" her mother, Julie Pressman, says, pointing to the sky. "I can finally exhale."

Her father, Rob, says it's "like a unicorn coming down."

"She's been so happy since the operation," he says. "We're looking forward to a great year."

It's a moment the family thought might never come.

After Cara speaks, Aetna changes policy

Cara's mother became a fierce champion for her youngest daughter, determined that Cara would get the surgery her doctors believed could stop her seizures.

Each time they struck, her body would grow cold and shake. She'd zone out anywhere from 20 seconds to two minutes, typically still aware of what was going on around her. She had seizures on the soccer field, during softball games, on stage during plays, in the classroom. Most anywhere.

Her doctors last year recommended Cara for laser ablation surgery, a minimally invasive procedure in which a thin laser is used to heat and destroy lesions in the brain where the seizures originate.

It's cutting-edge work, performed through an eighth-inch hole in the skull. Neurosurgeons believe it to be more precise and less invasive than traditional open brain surgery, in which a two-inch hole is cut in the skull or, in some cases, the entire skull cap is removed.

Yet the nation's third-largest insurance company overruled her treating physicians. In denying her coverage, Aetna said it considered laser ablation surgery "experimental and investigational for the treatment of epilepsy because the effectiveness of this approach has not been established."

"Clinical studies have not proven that this procedures [sic] effective for treatment of the member's condition," Aetna said.

When first approached for comment by CNN late last year, the insurance giant stood by its denial.

In response, Cara had this message: "Considering they're denying me getting surgery and stopping this thing that's wrong with my brain, I would probably just say, 'screw you.' "

From there, the story took off. The hashtags #ScrewAetna and #CaraPressman were shared across Twitter. Her grandmother made T-shirts for family members for Christmas that read "I'm on Cara's team" on the front; on the back, the message said #SYA (short for #ScrewYouAetna).

Behind the scenes, neurologists and neurosurgeons reached out to the family, offering support. But none was more powerful than Mark Solazzo, the executive vice president and chief operating officer of Northwell Health, New York's largest health care provider.

The hospital executive was so moved by Cara's story he told the family: "This is the last day you're going to fight Aetna on your own."

Solazzo is passionate on this issue: Insurance denials for what Northwell deems medically necessary procedures have swelled the past two years, with the health provider saying it lost $150 million in justifiable reimbursements at a time when insurance companies have been setting record profits.

The Northwell executive set in motion a chain of events. He tapped Dr. Ashesh Dinesh Mehta, the director of Northwell's epilepsy surgery, to handle Cara's case and even offered the surgery for free if Aetna still refused to cover it.

"I was happy to do that," Mehta said.

Cara underwent a series of tests this spring with her new team at Northwell. Mehta said her case was complex because the focal point of her seizures was fairly deep in her brain behind her temple. To perform an open brain surgery, he said, he would need to dissect a portion of her brain to get to the spot.

As a result, Mehta said, her team agreed with her previous doctors that laser ablation was the route to go.

"We did our due diligence, and we did determine that this would be the best way to treat her epilepsy," he told CNN.

Along the way, Aetna had a change of heart. In April, the insurer notified the family it would cover the surgery: "Coverage for this service has been approved, subject to the requirements in this letter."

There was no explanation. No apology. Just an approval with full coverage.

Pressed by CNN for answers, Aetna said the approval came after her doctors made a new request for laser ablation surgery. "Based on recently published clinical evidence, the procedure was approved."

Aetna went on to say it recently updated its policies for epilepsy patients seeking laser ablation. "Related, in July 2018 we made updates to our epilepsy surgery clinical policies based on recently-published data," Aetna said. "The new guidelines cover laser ablation surgery if certain criteria are met.

"As shared in December, we constantly evaluate new published and peer-reviewed studies as well as additional evidence when developing our clinical policies, and will continue to do so."

Mehta gave all the credit to the diminutive teen with the powerful voice: "She really advocated for herself, and it worked out for her. Whatever happened, it got her the appropriate treatment. I've got to hand it to her."

Northwell's Solazzo added, "Cara has been an inspiration to all those who have had the privilege of caring for her. Her advocacy and courage will hopefully clear the way for other epilepsy patients who could benefit from this surgery."

'Never been more excited'

The day of the surgery, July 25, was filled with nerves and excitement. Cara's parents and older sister, Lindsey, crowded her hospital room before the operation. They gabbed about trivial, everyday stuff, as families often do.

But make no mistake. The importance of the day weighed on everyone.

Cara told staff at North Shore University Hospital in Manhasset she had "never been more excited for anything in my life." Her first grand mal seizure, when she fell to the floor and shook, came at the age of 9, but she remembers having smaller aura seizures, when she would space out for brief spells, as far back as kindergarten. She can have five seizures in a day, sometimes as many as 30.

"It's been really, really difficult to live with," she said.

As she was wheeled off to the operating room, Dad wrapped his arms around Lindsey and held her, reassuring her that Cara would be OK.

Cara had waited until summer to undergo the surgery. That way, she could adjust to any changes in her brain activity before the new school year started.

Laser ablation is still emerging in the care of epilepsy patients, and Cara's mother said she hopes her daughter can serve as an example for other teens who qualify for laser surgery and are afraid of open brain surgery, known as a temporal lobectomy.

"This really gives people hope who are young and dealing with this -- that they can go forward early on in life and get this procedure done," she says.

In the operating room, the hourlong procedure "went quite well," Mehta said. "Everything went as planned."

There are only about 40 to 50 centers around the nation, Mehta said, where laser ablation surgeries are performed, with the technique becoming more popular in recent years. Mehta said existing data show about a 50% seizure-free rate for those who undergo laser ablation, compared to about 70% who undergo traditional open brain surgeries.

A comprehensive study is underway to better define its efficacy. But Mehta said he has had better success than the national average: "My results are about as good as the open temporal lobectomy."

The laser surgery is more appealing to patients and parents, he says, because open surgery can be so daunting. Laser surgery is less invasive, requires less time in the hospital and has a quicker recovery, Mehta said.

Patients can suffer short-term memory loss, especially forgetting names of people they meet. "It's not usually something that is devastating, especially when you're younger," he says. "Given that she's young, we believe that her brain is going to be more able to adapt."

Cara had one grand mal seizure in the days after the surgery, but she'd forgotten to take her anti-seizure medicine the day before. Mehta also says it's not unusual for patients to have seizures in the week or two right after surgery.

Based on her recovery three weeks after surgery, he believes Cara has a 60% to 80% chance of being seizure-free. The benchmark will be a year from now. "The big question is whether she will have one or two seizures a year or whether she has no seizures," Mehta says. "We want no seizures.

"I'm keeping my fingers crossed."

A new, vibrant Cara

At her birthday party, the new Cara is on full display. She dances. She laughs. She commands the crowd.

Her sister marvels at her transformation. "She is just flourishing," Lindsey says. "I've never seen her so vibrant and so open with herself."

Cara says it's been "weird" ever since her surgery because "I feel so much better." It's also a bit of an adjustment to think she could actually be seizure-free.

"It kind of feels like it's a little bit of a dream, but I also know it's real."

On stage, Cara honors 16 of the closest people in her life, and each helps light an individual candle. She begins with her father: "One of the funniest people I know."

There's the uncle who is "one of the biggest weirdos I know," the friend who "always knows when to cheer me up" and the one who "always has a smile on her face that never seems to leave."

She saves the 16th candle for her mom. Cara praises her as a triathlete and marathon runner, and thanks her for planning the entire party.

"She was there for me every single time I was in the hospital -- literally the best," Cara says. "Mom, please come up and light the final candle!"

As the Beatles' "Here Comes the Sun" echoes across the room, Mom rushes to hug her daughter. As the two embrace, George Harrison's voice sings:

Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here.

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