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Lawmakers Looking to Establish Rare Disease Advisory Council

photo of lawmakers' press conference
Karen Kasler
Kelly Maynard (far left) listens to a question at a press conference with Rep. Tim Ginter (R-Salem), Rep. Randi Clites (D-Ravenna) and Charlene York of the Ohio Rare Action Network. Clites’ 17-year-old son has hemophilia, which affects about 1,200 people";

There are more than 7,000 diseases that are considered “rare” – meaning that fewer than 200,000 people have them. But 10 percent of Americans have one of those “rare” diseases, including 1.1 million Ohioans. But now two lawmakers have come up with on a proposal that seeks to help them.

Kelly Maynard’s 12-year-old son Jackson has Duchenne muscular dystrophy, which she expects will be fatal in the next ten years. She lives near Nationwide Children’s Hospital in Columbus and has health insurance, but notes many families dealing with rare diseases do not and suffer from disparities in care.

“And while I don’t have all the answers for what causes these disparities, I do know the only way we’re going to find out and work on solutions is getting the pertinent stakeholders together to discuss it,” Maynard said.

She’s supporting a bipartisan bill creating a rare disease advisory council, which would include up to two dozen patients, medical professionals, researchers and state officials to look into the issues facing those with rare diseases. Nine states have similar councils that identify state resources and develop policy recommendations.

Karen is a lifelong Ohioan who has served as news director at WCBE-FM, assignment editor/overnight anchor at WBNS-TV, and afternoon drive anchor/assignment editor in WTAM-AM in Cleveland. In addition to her daily reporting for Ohio’s public radio stations, she’s reported for NPR, the BBC, ABC Radio News and other news outlets. She hosts and produces the Statehouse News Bureau’s weekly TV show “The State of Ohio”, which airs on PBS stations statewide. She’s also a frequent guest on WOSU TV’s “Columbus on the Record”, a regular panelist on “The Sound of Ideas” on ideastream in Cleveland, appeared on the inaugural edition of “Face the State” on WBNS-TV and occasionally reports for “PBS Newshour”. She’s often called to moderate debates, including the Columbus Metropolitan Club’s Issue 3/legal marijuana debate and its pre-primary mayoral debate, and the City Club of Cleveland’s US Senate debate in 2012.