As someone with first-hand experience of a promising new medication for her illness, Springfield High School student Rachel Burns was happy to add her voice today to a bill in Congress to promote the need for more research on juvenile diseases.
Rachel, 15, who has cystic fibrosis, joined with U.S. Sen. Sherrod Brown in a news conference at Toledo Children's Hospital, along with Rachel's family, caregivers, and hospital officials, to highlight his bill to require the National Institutes of Health to spend a bigger part of its budget on the illnesses that strike young people.
“Children make up 20 percent of the U.S. population, yet not much more than 5 percent of research dollars coming out of NIH and other research dollars, government and other, go into pediatric research," Senator Brown said.
"We know that some of the greatest minds, some of the most skilled minds, are doing pediatric research. We know that the emphasis has not been focused enough on pediatric research," Senator Brown said.
Cystic fibrosis is a genetic illness that causes thickening of the victim's mucus that impairs breathing and invites infection.
Four years ago, Rachel participated in a drug trial that improved her condition, but it ended after two years and the drug never came to the market because its average benefit was not strong enough to justify the program, Miss Burns said.
"I was a little upset when it got discontinued. Every time I come up to this hospital center I always bug Kelly [Houser, nurse and cystic fibrosis research coordinator at Toledo Children's Hospital] whether there's another research or drug that I can help with," Miss Burns said.
The National Pediatric Research Network Act would require NIH to identify up to 20 centers around the country to coordinate research in a "hub and spokes" way. The bill also seeks a reasonable proportion of pediatric research grants for rare diseases, which disproportionately affect children.
According to NIH, it funded more than $3.2 billion in pediatric research in fiscal year 2011 including more than 90 research networks and centers programs with a pediatric focus. Additionally, NIH said funding toward broad disease-specific research advances knowledge of pediatric diseases as well.
NIH funded more than $79 million in cystic fibrosis research in fiscal year 2011.
Toledo Children's Hospital has one of 80 cystic fibrosis care centers in the nation that are funded and accredited by the Cystic Fibrosis Foundation. The center has 169 patients, 90 of them under 18 and 79 who are adults.