Medicaid is a Matter of Life or Death for a 2-Year-Old in Pennsylvania - NBC New York
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Medicaid is a Matter of Life or Death for a 2-Year-Old in Pennsylvania

The health care debate played out closer to home Monday as Senate Republicans continued to weigh which version of their bill will be brought to a vote Tuesday.

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    NBC10's Lauren Mayk speaks with Children's Hospital of Philadelphia CEO, Madeline Bell about the potential impacts of the health care bill. Bell states that the bill will heavily impact patients and employees.

    (Published Monday, July 24, 2017)

    The health care debate played out closer to home Monday as Senate Republicans continued to weigh which version of their bill will be brought to a vote Tuesday.

    Pennsylvania Sen. Pat Toomey, a Republican who supports replacing and repealing former President Barack Obama’s Affordable Care Act (ACA), told NBC10 it was not clear if his party has enough votes to push through legislation.

    “If we do nothing, if we keep the design as it is now, if we keep the Obamacare expansion in exactly the form it is, if we do nothing else, then someday ... this is going to blow up,” he said. “The federal government cannot continue to run the kinds of deficit, rack up the kind of debt, it has.”

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    U.S. Senate prepares for vote that could pave the way for the repeal of the Affordable Care Act, also known as "Obamacare."

    (Published Tuesday, July 25, 2017)

    One way or another, it won’t be the end of the fight, he said.

    But to one Mount Airy family, the federal deficit is not the problem. Instead, they wonder if their 2-year-old daughter will ever walk or run.

    Claire Concilio's parents use Medicaid coverage to access treatment at the Children’s Hospital of Philadelphia for spinal muscular atrophy, a rare neuromuscular disorder that can lead to death.

    The disorder didn’t surface in the young girl until six months after her birth. That’s when Concilio’s parents noticed their daughter moving slowly and unable to lift her head. Her pediatrician thought weight gain was to blame until several more months passed and Concilio became increasingly incapacitated.

    At her one year check-up, doctors found the problem.

    "If Claire were to lose Medicaid, we'd lose more than the hope of her ever having a normal life,” Amy Concilio, Claire’s mother, said. “We would lose her."

    Without treatment, the 2-year-old cannot hold herself in a sitting position. She would likely never walk, let alone run or skip with her friends.

    Sen. Mitch McConnell's health care legislation would uproot much of Obama's health care law, eliminating its tax penalties on people not buying policies, cutting the Medicaid health care program for the poor and providing less generous health care subsidies for consumers, according to the Congressional Budget Office.

    The burden, some say, is too great for some families to bear. 

    “We’re going to fight and we’re going to hope she can walk with a walker or crutches someday,” Concilio said.

    “Thank you, CHOP, and thank you, Medicaid, for saving my daughter. Thank you for giving her a chance, and thank you, Pennsylvania, for not taking that chance away.” 

    More than 80 percent of patients at CHOP's Karabot Center receive health insurance through Medicaid, a program that could be substantially reduced under a new health care bill.

    “If you’re surprised by that number, you’re not alone,” Madeline Bell, president of CHOP, said. “Medicaid is the largest children’s health program in the United States. Many of these children have no other options for health insurance.”

    Throughout the state, more than 1.1 million people receive coverage through the Affordable Care Act’s health insurance exchange and Medicaid expansion, Gov. Tom Wolf said while touring CHOP Monday afternoon.

    Roughly 32,000 patients at CHOP and its West Philadelphia Karabots Pediatric Care Center are on Medicaid, the hospital’s largest insurance payer, according to Bell. Nationally, more than 33 million kids depend on Medicaid.

    “Everything we have seen proposed up to this time significantly cuts Medicaid and benefits for those children,” Bell said.

    “When you start thinking about the fact that we support buildings and jobs, not to mention very vulnerable children, it would have a very devastating impact on CHOP, the local economy in Philadelphia. It’s those talking points that sometimes get missed.”

    A spokesperson from Toomey's office said the Senate bills being considered would not impact children with disabilities.