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(Blog) Congress reintroduces RACE for Children Act (KvC Newsletter)

February 28, 2017

Addressing the innovation gap in children’s cancer research caused in part by high-priced cancer drugs
 
RACE is endorsed by Nature editorial

Kids v Cancer is thrilled to announce that yesterday Congress reintroduced the Research to Accelerate Cures and Equity (RACE) for Children Act (S 456, HR 1231) to bring new therapies to children with cancer.We thank Senators Michael Bennet (D-CO), Marco Rubio (R-FL), Chris Van Hollen (D-MD) and Cory Gardner (R-CO) along with Representatives Michael McCaul (R-TX-10), G.K. Butterfield (D-NC-01), Sean Duffy (R-WY-07) and Yvette Clarke (D-NY-09) for their leadership and commitment to finding better cures for children with cancer. We also thank the dedicated and brilliant Congressional staff who helped reintroduce the RACE for Children Act.

Nancy Goodman, Founder and Executive Director of Kids v Cancer, noted, “When my 10-year-old son, Jacob, was in treatment for pediatric brain cancer, I was amazed to learn that although there were many new and promising cancer drugs in development, these drugs were not available to children. The RACE for Children Act addresses this problem by providing that drug companies study the most promising new cancer drugs not only in adults, but also in kids.”

Although cancer is the number one disease killer of children, new and innovative cancer treatments are not given to children until years after adults receive them.

The issue is that high drug prices have priced out pediatric cancer research. Academic pediatric oncology researchers are very interested in undertaking pediatric cancer studies, however, they are stymied by their inability to buy high priced drugs for studies in children. This is due in large part to inadequate economic incentives or obligations for drug companies to conduct pediatric cancer research.

RACE would solve this problem by requiring companies to give pediatric cancer researchers free supplies of cancer drugs, or conduct the pediatric studies themselves.

The RACE for Children Act is not a new law: it is an update of the 2003 Pediatric Research Equity Act (PREA), which requires companies developing drugs to undertake certain pediatric studies when the diseases for which the drugs are developed affect children.  However, there has never been a PREA study of a cancer drug because children’s cancers occur in different parts of the body than adult cancers. But children’s cancers do have the same molecular targets as adult cancers.

The RACE for Children’s Act enables the law to catch up to the science by authorizing the FDA to require that companies developing cancer drugs conduct PREA pediatric studies when the molecular targets of the drugs are germane to pediatric cancers. In addition, the RACE for Children Act ends the current exemption from PREA obligations for cancer drugs for orphan diseases.

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