Pediatric Brain Tumor Research

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Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act:

A Bill to Improve Pediatric Cancer Research and Information

Background

The original Caroline Pryce Walker Conquer Childhood Cancer Act was passed unanimously into law with broad bipartisan support in 2008. It was named after former Congresswoman Deborah Pryce’s daughter Caroline, who passed away in 1999 at age nine from Neuroblastoma, a rare type of central nervous system tumor. The 2008 law authorized appropriations through Fiscal Year 2013. The currently pending Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act (HR 2607/ S. 1251) would reauthorize the 2008 law, as well as a related appropriation of approximately $10 million through Fiscal Year 2018. If passed, the bill would facilitate new drug discovery and development in pediatric cancer.

Pediatric Brain Tumors Are A Leading Cause of Cancer Death in Kids

  • Every year, more than 4,000 children are diagnosed with a brain tumor in the United States.
  • Malignant brain tumors are the leading cause of cancer-related death for children under 10 years of age, and the second leading cause of cancer-related death in all children under 20 years of age.
  • For more aggressive high-grade gliomas, which represent approximately 11% of pediatric brain tumors, chances of long-term survival are less than 20%.
  • Currently, biospecimens and demographic data are collected from less than half of pediatric cancer patients.

Congress Can Help

Pass the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act to improve pediatric cancer research and collect vital statistics.

This important piece of legislation would:

  • Authorize the Director of the National Institutes of Health (NIH) to award eligible applicants the ability to collect biospecimens and demographic information for at least 90% of children/ adolescents with cancer. This, in turn, would allow researchers to achieve a better understanding of pediatric cancer and the effects of treatments, as well as provide access to a secure, searchable database for scientists and healthcare professionals to conduct peer-reviewed research.
  • Grants would also be awarded to state cancer registries, enhancing the system to track the epidemiology of cancer in children and adolescents.
  • Produce a report to be presented to Congress about the barriers to conducting pediatric cancer research and drug development. The report would also examine the feasibility of expanding the Pediatric Research Equity Act’s requirement to conduct pediatric assessments of new drugs seeking an adult approval to orphan drugs, such as those developed to treat pediatric brain tumors.

Congress should support The Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act (HR 2607/S. 1251), and increase its commitment to fighting pediatric cancer.