Lawmakers Propose Council To Help People With Rare Diseases

Nov 14, 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.

Two state lawmakers have now proposed a bill to help address some of the unique concerns patients and families face when dealing with health care, insurance, housing, employment and other issues. 

Kelly Maynard’s 12-year-old son Jackson has Duchenne muscular dystrophy, which she expects will be fatal in the next ten years.

Maynard lives near Nationwide Children’s Hospital in Columbus and has health insurance, but noted 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.

Of the 7,000 diseases that are considered rare, 90% have no cure or FDA-approved treatment.

They include certain cancers, neurological conditions and genetic disorders. Some are fairly well known, such as cystic fibrosis or ALS, also known as Lou Gehrig's Disease. But advocates say those are unusual in the attention and research it's gotten. Another rare disease is Addison's disease or adrenal insufficiency, which President John F. Kennedy was found to have suffered from. Others include an allergy to food called eosinophilic gastroenteritis or progeria, a genetic syndrome that causes children to age so rapidly that their average life span is just 13 years.

Maynard is supporting a bipartisan bill from Reps. Tim Ginter (R-Salem) and Randi Clites (D-Ravenna) creating a rare disease advisory council. It would include up to two dozen patients, medical professionals, researchers and state officials to look into the issues facing those with rare diseases.

Clites said this is a particularly important issue for her. Clites’ 17 year old son has hemophilia, which affects about 1,200 people in Ohio, making it one of the top three states with this rare disease.

Charlene York with the Ohio Rare Action Network for the National Organization for Rare Disorders said nine states have similar councils that identify state resources and develop policy recommendations: Alabama, Connecticut, Illinois, Kentucky, Minnesota, Missouri, New Hampshire, North Carolina and Pennsylvania.