A Springfield High School student with cystic fibrosis and U.S. Sen. Sherrod Brown (D., Ohio) teamed up today in Toledo to promote the need for more research on juvenile diseases.
Rachel Burns, 15, and Senator Brown joined in a news conference at Toledo Children's Hospital, along with Rachel's family, caregivers, and hospital officials to promote the senator's bill to require the National Institutes of Health to spend a bigger part of its budget on the illnesses that strike young people.
Miss Burns said she looks and acts like a normal teenager.
"On the inside there's a different story. I have CF. CF has affected my life a lot but the CF research center and the people who put their time and money into finding ways and medicines to find cures have dramatically helped not only me but everybody out there," she said.
The genetic disease causes a thickening in the mucus in the lungs of its victims, impairing their breathing and inviting infections.
“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."
He said the bill he is co-sponsoring, the National Pediatric Research Network Act, would require NIH to set up eight research centers around the country to coordinate the research in a "hub and spokes" way.
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.
The hospital carries out drug and therapy trials paid for mostly by the foundation and by drug companies themselves.
Miss Burns manages the illness with her 4 a.m. medical regimen and softball and volleyball practice while maintaining a 4.1 grade-point average.
Rachel's mother, Heather Burns, said her daughter's daily care involves an hour-long regimen two times a day involving an aerosol and a vest that loosens the mucus in Rachel's body.
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Four years ago Miss Burns 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 expense, Miss Burns said.
She said she asks her doctors and nurses about new drug trials every time she visits the hospital, which is at least monthly.
Mr. Brown said he doesn't know if the increased focus on pediatric research will cost the government more money or reallocate the money that's already budgeted.
Dr. Pierre Vauthy, medical director of pediatric pulmonary medicine and research coordinator at Toledo Children's Hospital, said that because of pediatric research, cystic fibrosis patients have improved their survival by 30 years and researchers are now close to finding medications that may totally control the disease.
According to Senator Brown, similar legislation has previously passed the House, and the bill is supported by a variety of medical entities, including the American Academy of Pediatrics.
Contact Tom Troy