The health care legislation in front of the Senate could allow states to redefine what insurance covers. And that could mean returning to the days of lifetime limits – that’s a cap on how insurers will pay certain expensive patients.
Today, six-year-old Clara Hardy’s biggest struggle is holding her breath long enough to touch the bottom of the the neighborhood pool.
But immediately after she was born in 2011 she couldn’t even breathe on her own because she had a congenital diaphragmatic hernia.
“On day eight the surgeons cut me open. Everything that was in my chest got moved back to my belly," Clara said. "They put a patch to fix the hole in my diaphragm.”
Clara reads her story from a construction paper book she wrote and illustrated in crayon with a little bit of help from her mom Chrissy.
“We were told more than once she would not survive," Chrissy said.
But after many procedures that Chrissy said cost more than a million dollars, she got to finally cradle her baby.
"She was born two months before I turned 30," she said. "And I held her the day before my 30th birthday."
At the time she had health insurance through her job as a public school teacher. So the family’s out of pocket costs were just $10,000.
But under the GOP proposal, the Hardy’s could be on the hook for a lot more. It gives the states wiggle room on Obamacare’s essential health benefits and that leaves the door open to insurers to charge more and even bring back lifetime caps on how much they’d pay. The details are up in the air, but Clara’s dad Robert is worried.
"I don’t really know what the limit would be but there is probably a good chance that she’s hit it," he said.
"The mistaken impression is that if lifetime caps are established, then people won’t go beyond those caps," Julie Henry with the North Carolina Hospital Association said. "But that’s not realistic.
She said hospitals would likely have to absorb those losses and that means spreading the cost out among their other patients.
Matt Fiedler is with the Brookings Institution – a left leaning think tank. He warns that the problem of lifetime limits could spread quickly because large companies that offer health insurance could chose the essential health benefits from whatever state they want.
“If you are an employer with 150 employees so you are buying large group market coverage and you are entirely in Pennsylvania," Fiedler said. "You can chose Mississippi’s definition of essential health benefits for the purposes of the lifetime limit provision.”
For people buying plans from the exchanges, they’re likely limited to what their state is willing to cover.
“If a benefit were no longer essential health benefits you would probably not have plans that would offer that type of coverage without an annual or lifetime limit," he said. "People would just have no place to go.”
The Hardy’s now get insurance through the exchange which they say is their most expensive monthly bill.
Neither North Carolina senators responded to requests for comment. But Senator Richard Burr released a statement last week saying he’s encouraged the law keeps protections for those with pre-existing conditions
But Robert Hardy is worried that he may end up footing a substantial portion of future medical expenses Clara could incur because of her past health problem.
“I would like to be able to be in a situation where I knew that didn’t have to worry if I was going to have to face a decision to bet my financial security against my child’s health," Robert said.
His rambunctious smiling daughter lifts her pink shirt a little to show me a scar that cuts diagonally across her entire stomach.
“My scar on my tummy makes me proud," Clara said. "It is a reminder that I am tough and I can do hard things.”