Representatives Push Childhood Cancer Bill
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Representatives Push Childhood Cancer Bill

Senate Has Already OK’d the Legislation, But It’s Still Working Its Way Through the House

The U.S. House is considering a bill that could help research into the most hard-to-treat childhood cancers.

The bill, S.292, would promote collecting medical specimens such as bone marrow and tumor tissue, blood and plasma, DNA and information from children with cancer to help research. It would also fund state cancer registries collecting information about childhood cancers and include at least one pediatric oncologist on the National Cancer Advisory Board.

“If a treatment is working, doctors elsewhere should know immediately,” said Sen. Jack Reed (D-R.I.) who sponsored the bill. “The same should happen if a treatment isn’t working, or if other major medical events occur during the course of a particular treatment.”

The Senate unanimously passed the Childhood Cancer Survivorship, Treatment, Access and Research Act in March. It is now before the House Energy and Commerce Committee.

Action Box/What You Can Do About It

Contact members of the House Energy and Commerce Committee and ask them to forward the bill to the full House for a vote. The phone number for the committee is 202-225-2927, and the address is 2125 Rayburn House Office Building, Washington, D.C. 20515.

Contact St. Baldrick’s Foundation at 626-792-8247 or sbinfo@stbaldricks.org

Childhood cancers make less than 1% of all cancers diagnosed in the U.S, and cancer is the second leading cause of death in children ages 5 to 14. The average age at diagnosis is 8. About 1,800 children die each year of cancer in the U.S.

Most cancer research funding goes to adult cancer, and childhood cancer drugs aren’t very profitable for pharmaceutical companies slowing developing therapies to treat childhood cancer. In 2015, pediatric cancer research received 4% of federal cancer research funding.

“That shouldn’t be true,” said Matthew Meyerson, a cancer geneticist at the Dana-Farber Cancer Institute in Boston.

Parents frantic to save their children like Montana tile worker Andy Woods read medical journals to research possible drugs. Childhood cancers tend to be more aggressive than adult cancers and often are detected at a later stage.

Fewer than 10 drugs have been approved to treat pediatric cancer since 1980, including dinutuximab, which treats neuroblastoma, a cancer of the nervous system.

Parents of children who have died sometimes form foundations to help fund research that could help other children such as the Lyla Nsouli Foundation and With Purpose.

The foundation of Trump’s son, Eric, donated money to the St. Jude Children’s Research Hospital in Memphis, but it is being investigated by the New York attorney general after reports that the foundation paid for events at Trump properties.

Overall mortality rates for childhood cancer have declined by more than 50% from 1975-1977 to 2010-2014. The most common types of childhood cancer include leukemia, lymphoma and cancers of the brain and nervous system.

April 18, 2018