Lawmakers Looking to Establish Rare Disease Advisory Council

Nov 15, 2019

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.