Re-Introduction of the STAR Act in the 115th Congress
Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act
Every day in the United States 36 children are diagnosed with cancer. A total of 2,500 children will die from these diseases each year. Pediatric cancer is the leading cause of disease-related death for children in the United States. Greater support is needed to research the causes and potential treatments for this deadly disease. This was the purpose of the Caroline Pryce Walker Conquer Childhood Cancer Act, which was signed into law in 2008. This legislation now needs to be reauthorized, which is why Representative Chris Van Hollen and Representative Michael McCaul introduced H.R. 2607, the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act. Senator Jack Reed has introduced a companion, S. 1251, in the Senate.
The Caroline Pryce Walker Conquer Childhood Cancer Act was named in honor of former Representative Deborah Pryce’s daughter Caroline who passed away from neuroblastoma in 1999 at the age of nine. This legislation passed unanimously in the House and Senate in 2008. Reauthorization of this law would build upon, expand, and improve the federal efforts over the last five years for children with cancer.
Researching childhood cancer is very difficult. There is a relatively small population of children with cancer, and there are typically great geographic distances between patients who have the same type of cancer. No single hospital or cancer center will treat enough children with a particular type of cancer to be able to adequately conduct clinical research due to the small patient population. The development of a national database of high quality biospecimens and demographic data would allow researchers to have the appropriate number of datasets in order to conduct valid research that can be applied to a larger patient population for children with cancer.
The Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act of 2013 will address the issues that have arisen for research into pediatric cancer since the original legislation was enacted into law in 2008. H.R. 2607 will expand opportunities for childhood cancer research. Under the 2008 legislation, only those patients enrolled in a National Cancer Institute member institution had the availability to participate in research into pediatric cancer therapies, clinical trials and preclinical testing. This bill would expand these efforts so that all children, adolescents, and young adults will have the opportunity to donate biospecimens to the nationwide repositories for the purpose of creating datasets for peer-reviewed cancer research that can be applied to a larger patient population. These biospecimens and demographic data would be collected only with the appropriate consent, and there is no requirement that all pediatric cancer patients participate in the research. The bill also requires a report be submitted to Congress to indicate the number of biospecimen datasets that have been collected, the number utilized by researchers, the barriers to collecting biospecimens, and the barriers researches have in accessing the Comprehensive Children’s Cancer Biorepository and how to improve it.
Another issue the bill addresses is improving childhood cancer surveillance. This would take the efforts of the previous five years under the original legislation and authorize state cancer registries to identify and track the incidences of child, adolescent, and young adult cancers in each state.
A last improvement this bill addresses is the need to identify the barriers to pediatric oncologic pharmaceutical and biologic therapies. There have been great strides made in the development of adult oncologic treatments, but few treatments have been approved for children. This bill would initiate an investigation led by the Government Accountability Office to determine the feasibility of expanding FDA requirements for pediatric studies of adult oncologic drugs and make recommendations for overcoming any research barriers.