ARI SHAPIRO, HOST:
Senate Republicans' plan to overhaul the Affordable Care Act could allow states to redefine what is covered by health insurance, and that could mean returning to the days of lifetime limits. Those were caps on how much insurers might have paid for certain expensive patients. Alex Olgin from member station WFAE introduces us to a 6-year-old who this bill might affect.
ALEXANDRA OLGIN, BYLINE: These days, 6-year-old Clara Hardy's biggest struggle is holding her breath long enough to touch the bottom of the neighborhood pool.
CLARA HARDY: OK, ready, Dad?
ROBERT HARDY: (Laughter) OK.
OLGIN: But immediately after she was born in 2011, she couldn't even breathe. She had a serious birth defect called a congenital diaphragmatic hernia. As she explains it...
CLARA: On day eight, the surgeons cut me open. Everything that was in my chest got back to my belly. They put a patch to fix the hole in my diaphragm.
OLGIN: Clara reads her story from a construction-paper book she wrote and illustrated in crayon with a little bit of help from Mom, Chrissy.
CHRISSY HARDY: We were told more than once that she would not survive.
OLGIN: But after many procedures that Christie says cost more than a million dollars, she finally got to cradle her baby.
C. HARDY: She was born two months before I turned 30, and we held her for the first time on the day before my 30th birthday.
OLGIN: 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 Hardys could be on the hook for a lot more. The bill gives 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.
R. HARDY: I don't really know what that limit would be, but there's a very good chance that she's probably already hit it.
OLGIN: The Affordable Care Act bans insurers from imposing lifetime caps on expensive patients. Matt Fiedler is with the Brookings Institution. He warns that if the GOP bill passes, the problem of lifetime limits could spread quickly because large companies that offer health insurance could choose the essential health benefits from whatever state they want.
MATT FIEDLER: If you are an employer with, say, 150 employees - so you're buying large, group market coverage; you're entirely in Pennsylvania - you can choose Mississippi's definition of essential health benefits for the purposes of the lifetime limit provision.
OLGIN: For people buying plans from the exchanges, they're likely limited to what their state is willing to cover, says Fiedler.
FIEDLER: If a benefit were no longer a central health benefit, you would probably not have plans that offered that type of coverage without an annual or lifetime limit. So it's just - people would just have no place to go.
OLGIN: And that effectively guts protections for pre-existing conditions. The Hardys now got insurance through the exchange which they got despite Clara's past health problems. 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.
R. HARDY: I would like to be able to be in a situation where I knew that I didn't have to worry if I was going to face a decision to bet my financial security against my child's health.
CLARA: The doctors thought I would die, but I didn't.
OLGIN: As Clara reads her book, she lifts her pink shirt a little to show me a scar that cuts diagonally across her entire stomach.
CLARA: My scar on my tummy makes me proud. It is a reminder that I am tough and I can do hard things.
OLGIN: For NPR News, I'm Alexandra Olgin in Clemmons, N.C.
(SOUNDBITE OF TORO Y MOI SONG, "SAY THAT")
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