Senator Brown wants more pediatric-research funding: Bill would shift more federal money to kids’ illnesses

THE COLUMBUS DISPATCH Tuesday January 29, 2013 8:24 AM
By  Joshua Jamerson 

When Madison Reed was 7 months old, doctors told her parents she wouldn’t live past 2. “No parents should have to hear those words,” Annette Reed said. But unconventional methods helped Madison, who had type-1 spinal muscular atrophy, a rare disease impairing her motor functions. Now the Dublin resident is 15 years old.

The Reeds stood behind Sen. Sherrod Brown yesterday at Nationwide Children’s Hospital as the Ohio Democrat used their story to illustrate the need to increase funding for pediatric research.

Brown said that because children make up 50 percent of the population with rare diseases, the current 5 percent of National Institutes of Health research funding that goes toward pediatric studies is inadequate. Brown plans to propose a bill that would restructure the way the NIH awards grants, but has no cost attached to it, said Lauren Kulik, Brown’s press secretary.

“My bill can help increase our understanding of pediatric diseases, improve treatment and therapies, and create better health outcomes for our nation’s children,” Brown said.

Sen. Roger Wicker, R-Miss., is the co-sponsor, so the bill will have bipartisan support, Brown said, adding, “Politics shouldn’t get in the way of this bill.”

The bill would allow more long-term studies to be funded at Children’s, said Dr. Brian Kaspar, who heads basic neural muscular research at the hospital.

The Reed family began fundraising for pediatric research at Ohio State University and, together with other families and private donors, has raised more than $1 million.

Madison Reed turns 16 next week.Of more money for research into pediatric diseases, she simply said, “It’s good.”