Brown pushes for more pediatric research funds - 13abc.com Toledo (OH) News, Weather and Sports

Brown pushes for more pediatric research funds

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13abc.com Malena Caruso, Action News Reporter - email

Ohio Senator Sherrod Brown wants more governemnt funding to research pediatric diseases. He brought his fight for new legislation to Toledo on Friday

He says he's fighting for children like Rachel Burns.

"I'd tell them that there is hope around the corner," said 15-year-old Burns, who has Cystic Fibrosis.

Sen. Brown said children make up 20 percent of the American population, but only about six percent of research dollars focus on childhood diseases. He insists this must change.

That "hope" Rachel spoke of comes in the form of drug trials funded by research grants.

"I know myself I have days where I'll be sitting here like, I'm stuck with this disease, why me," she said.

Rachel is a freshman honors student at Springfield High School. She plays volleyball and softball.

"When I was seven, when I had gotten out of surgery, they said I think she has CF," she said.

They told her she wasn't expected to live past 12. She is 15 now.

"What we've accomplished in the 40 years I've been in CF care.  We've increased the life of our CF patients so that it's no longer a pediatric decease," said Rachel's physician Dr. Pierre Vauthy.

Doctors say much of the success comes from clinical drug trials. Rachel participated in a drug trial where it turned out she was given the trial drug.

"These studies are great. They make you feel better and it's a way to improve your life," she said. But, because of a shortage of funds Rachel's treatment ended early.

Now this Ohio Democrat wants to make sure studies are fully funded.

"This is one way of helping people like Rachel live healthier, normal, productive lives," said Brown.

Dr. Vauthy agreed, "After all... We should invest in kids because kids are our future."

Doctors say with today's advancements in new drugs, Cystic Fibrosis patients are living until their late thirties.

"Who says that by the time I'm 38 I'm going to kick CF in the butt, and it's going to be up to the 80s," Rachel said.

Senator Brown picked Toledo Children's Hospital to make his announcement because it is a leader in research and treatment of pediatric diseases.

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