CureSearch for Children's Cancer funds and supportstargeted and innovative children's cancer research with measurableresults, and is the authoritative source of information and resourcesfor all those affected by children's cancer.
WASHINGTON - 8-year-old Ryan Darby marched right up on a stage in the Capitol Visitor's Center, stood on a ladder and talked about his dream.
"Maybe one day, every kid that gets diagnosed with leukemia will beat it, like me."
Ryan has beaten leukemia, but one in five kids with cancer do not survive.
"There are 13,500 children that are diagnosed with cancer each year. That sounds like a lot, but actually there are a lot of different types of childrens' cancer, so when you start to break it down, individual types of cancer are so rare that there is not a lot of incentive for pharmaceutical companies to get involved in developing and discovering drugs for childrens' cancer," says John Lehr of CureSearch Children's Cancer.
Only one drug for pediatric cancer has been developed in the last 20 years. Nancy Goodman's son, Jacob, died of brain cancer when he was 10-years-old.
"Within two weeks of Jacob's diagnosis, Jacob's medical team had information that the drugs they were intending to give him were unlikely to work. And they continued giving him those drugs because there were no alternatives available," says Goodman, now executive director of KidsvCancer.
Goodman lives in D.C. Ryan is from Bethesda. Both made the short trip to lobby on Capitol Hill for something called the "Creating Hope Act."
Here's how it would work. When a company wants to get a new money-making drug on the market, it has to wait in line at the FDA.
But if that company were willing to manufacture a less lucrative pediatric cancer drug, both that drug and the big money-maker drug would be moved to the front of the line.
Ryan says his doctor, Aziza Shad, saved his life at Georgetown University Hospital. She wishes she could do that more often.
"I think the hardest part of my job is when you come to what we call the end of the line. When you've given every possible treatment to a child and there is nothing new to offer. I think that will change because of this act," says Dr. Shad.
Christine BorkEmail Christine(240) 235-2208