On December 21, 2020, Congress passed a federal funding bill that included $80 million specially set aside for childhood cancer research programs. This funding agreement included $30 million to fully fund the Childhood Cancer STAR Act, the most comprehensive childhood cancer bill in history, and $50 million to fund the Childhood Cancer Data Initiative (CCDI).
This is a victory we all can celebrate. In a year of unprecedented challenges, our lawmakers committed to do more for kids facing a cancer diagnosis and for childhood cancer survivors.
St. Baldrick’s Foundation, a ProposalCentral client, was a pivotal advocate throughout the legislative and appropriations process.
The STAR Act, passed in 2018, stands for the Survivorship, Treatment, Access and Research (STAR) Act. It is the most comprehensive childhood cancer legislation ever taken up by Congress. The goals of the STAR Act allows grants to be given to state cancer registries across the U.S. to identify and track incidences of cancer in children, adolescents and young adults. This funding will be used to identify and train those individuals who report childhood cancer cases, secure infrastructure to handle this information and support the collection of cases into a national childhood cancer registry. In addition, the STAR Act will enhance research on the late effects of childhood cancers, improve collaboration among providers so that doctors are better able to care for this population as they age and research innovative models of care for childhood cancer survivors. Finally, the Act requires the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.
The Childhood Cancer Data Initiative (CCDI) focuses on the critical need to collect, analyze, and share data to address the burden of cancer in children, adolescents, and young adults (AYAs). The initiative supports maximizing the use and benefit of data from childhood and AYA cancer research for patients and survivors and aims to make it easier for researchers to learn from each of the approximately 16,000 children and adolescents diagnosed with cancer in the United States each year.
This is a victory we all can celebrate. In a year of unprecedented challenges, our lawmakers committed to do more for kids facing a cancer diagnosis and for childhood cancer survivors.
