COLUMBUS (WCMH) -- Families with medically fragile children say they are trying to organize and converge on the Statehouse to fight against proposed changes for the Bureau of Children with Medical Handicaps.
BCMH covers medicines, devices and therapies that private insurance does not.
The change would shift thousands of families to Medicaid. Some others would be grandfathered in. But for babies born after July first, BCMH will be gone.
For nearly a month, Colleen Marshall says she has been trying to get someone from Governor Kasich's office to go on camera to answer questions about the proposed changes. Nobody has agreed to talk on camera yet.
Two teens that fear their safety net will disappear are now speaking out, and they have plenty to say.
"This is something we worry about especially for other families And if we were born after July, we wouldn't even have had this opportunity right now to be on BCMH - it's a lifeline to people and a safety net," said Alyson Hoffman.
Alyson and her identical twin sister Andrea share the genetic anomaly that causes cystic fibrosis. Morning and night, they strap into an inflatable oscillating vest that vibrates at a high frequency and loosens the mucus their bodies otherwise could not expel.
"Somehow, some way I think it's blessed us. As odd as that sounds, because we're able to live a life that might have more struggles but it only makes us stronger," said Andrea.
They say it has made them strong enough to join the fight to save BCMH. Those vests cost $16,00 each. The daily medicine fills a table.
The most expensive drug on that table costs $30,000 for a box.
Around 40,000 families rely on BCMH to pick up the tab when insurance and Medicaid will not. Each year, families have to reapply and prove they are still eligible.
The Hoffmans know they will not meet Medicaid criteria and fear they will be dropped from the program.
The state claims the program is 11 million dollars in the red. The twins say they can't understand why lawmakers can't figure out a way to find more funding for a program that keeps children alive.
"It's definitely something they need to put as their first priority," said Alyson.
"They have to continue to support families in need that need care for their children because if not, there's going to be problems with children living," said Andrea. "It's a matter of life and death."
In the coming days, you will hear much more from the Hoffman family. Reverend Dave Hoffman has served for 10 years on the parents' advisory board for BCMH. He says not only did the Governor's office fail to seek the advice of the board, it kept parents completely in the dark about the proposed changes.
Check these links for more information about the proposed changes.Children with Medicaid Handicaps Proposal Fact SheetChildren with Medicaid Handicaps Proposal FAQ
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