Parents of Dayton Children’s patient speak out against health bill

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Parents of Dayton Children’s patient speak out against health bill

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KAITLIN SCHROEDER
James Phillips and Colleen Reed are the parents of Jace Phillips, who is at Dayton Children’s and has been diagnosed with cystic fibrosis. KAITLIN SCHROEDER/STAFF

Local parents of a baby with a chronic illness said the safety net that Medicaid provides for their son is in jeopardy because of the latest effort in Congress to repeal major parts of the Affordable Care Act.

The parents and Dayton Children’s Hospital CEO Deborah Feldman spoke out Monday against the latest effort led by Congressional Republicans Lindsay Graham and Bill Cassidy to repeal the ACA, also known as Obamacare.

As of today, Senate Republicans have not been able to get the 50 committed yes votes that are needed to pass the legislation before Sept. 30, when special procedure rules expire and Republicans again need 60 votes to pass but only have a 52-seat majority.

Dayton Children’s and other pediatric hospitals around the country have pushed back against instability for children’s health programs under the bill, which would make major changes to Medicaid including capping the amount of federal money given to the government health insurance program. The hospital is also still waiting as Congress gets unusually close to missing the Sept. 30 deadline to renew the Children’s Health Insurance Program, which typically renews with popular bipartisan support and covers children from families that make too much for Medicaid but still are in need.

James Phillips and Colleen Reed are the parents of four-month-old baby, Jace Phillips, who has been diagnosed with cystic fibrosis — a chronic condition that affects the lungs and digestive system. They say without their insurance plan through CareSource they would not be able to pay for their son’s care, which can add up fast with his medical condition.

Phillips said the couple feels the pressure as parents to make sure their child has his needs taken care of, including his medical costs, and it’s a huge concern whether they will have some type of stable coverage.

“There’s going to be a lot of medical expenses involved … We go to work. We do what we’re supposed to do every day, but then there’s those bills that I don’t know, are we going to be able to tackle it? And then is our government going to be there for us?” he said. “So it does raise alarm and it does cause a lot of concern with both of us and with raising him and making sure he gets the care and everything that he needs.”

Reed said the enzymes their son will need to take can cost maybe $5,000 a month and then there’s additional medical expenses like doctor’s visits and breathing treatments he will need to do for the rest of his life.

“I’ve never really relied on CareSource or Medicaid before, but now I have to,” she said.

Feldman said the four Affordable Care Act repeal and replace bills introduced in Congress, including Graham-Cassidy, don’t sufficiently protect programs that benefit children’s health like CHIP and Medicaid and over 55 percent of Dayton Children’s patients are covered through these programs. Dayton Children’s saw 339,131 patients last year.

“Children don’t vote and so it’s up to us, the adults, their parents, their advocates, to make sure that somebody is protecting them,” said Feldman.

This is Dayton Children’s chief executive’s second public appeal this year. The independent pediatric hospital has also been campaigning against the legislation through its social media and it is a member of the Children’s Hospital Association, which is against the bill.

“Our concern is that people will get complacent … We’re far away from Washington. We’re all busy in our lives and so we worry that inadvertently our community won’t understand that what’s happening in Washington could affect our children’s lives or their neighbor’s children’s lives or their grandchildren in a way that was never anticipated,” Feldman said, adding “this bill is just simply not good for kids.”

Sen. Rob Portman’s office said the Ohio Republican is reviewing the latest version of the proposal to assess what its impact is on Ohio.

“As you all know, 42 counties in Ohio have only one insurer, and 27 more have just two. On top of that lack of competition, costs continue to skyrocket, so Rob believes Congress has to do something. We need a better health care system that lowers the cost of coverage and provides access to quality care, and Rob is hopeful we can accomplish those goals,” the statement read.

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