House Passes Bill Including Funding for STAR Act, Childhood Cancer Data Initiative & Pediatric Research
The House of Representatives passed a bill this week that includes full funding for the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act and the Childhood Cancer Data Initiative (CCDI). The bill also includes funding to support pediatric cancer research (as authorized by the Gabriella Miller Kids First Research Act), and calls on the National Cancer Institute (NCI) to ensure there is appropriate pediatric cancer expertise throughout all applicable areas of its work.
Highlights of the funding and report language included in the bills follow:
Childhood Cancer STAR Act — With authorized funding of $30 million for continued implementation of the STAR Act, the bill will allow NCI to continue to conduct and support childhood cancer survivorship research as authorized in the STAR Act. The STAR Act, enacted in 2018, is the most comprehensive childhood cancer bill ever taken up by Congress. It expands opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences and enhance the quality of life for childhood cancer survivors. Funding for FY22 will also allow the expansion of existing biorepositories for childhood cancer patients enrolled in NCI-sponsored clinical trials.
Childhood Cancer Data Initiative (CCDI) — The bill includes $50 million for the second year of the Childhood Cancer Data Initiative. As the bill notes, the development of new therapies is important to finding a cure for childhood cancers, many of which have not seen new therapies in decades. NCI established the National Childhood Cancer Registry as a part of the Childhood Cancer Data Initiative. Data sets for childhood cancers are often small and spread out across institutions or aggregated into State-wide or Federal registries where the particulars of incidence rate by cancer are lost. Traditional disease registries such as the Federally supported Surveillance Epidemiology and End Results Program (SEER) and the CDC’s National Program for Cancer Registries (NPCR) aggregated into the U.S. Cancer Statistics (USCS) do not yet include all of the data relevant to cutting-edge pediatric cancer research (such as the molecular characteristics of each child’s cancer). The bill urges NCI to use available resources to ensure all relevant data needed to assist childhood cancer researchers in developing innovative treatments for childhood cancer are made available through the National Childhood Cancer Registry and other integrated CCDI programs.
Gabriella Miller Kids First Pediatric Research Program — The Gabriella Miller Kids First Pediatric Research Program enables researchers to uncover new insights into the biology of childhood disease. Since its inception, Kids First has initiated the Gabriella Miller Kids First Data Resource Center, which is a comprehensive data resource for research and patient communities meant to advance discoveries. With the progress that the Program has made towards understanding childhood cancer and disease, the bill provides $12.6 million to support pediatric research as authorized by the Gabriella Miller Kids First Research Act.
Lastly, we’re encouraged to see that pediatric cancer expertise at the National Cancer Institute (NCI) is highlighted within the bill. With continued implementation, the STAR Act calls on NCI to ensure that all applicable study sections, committees, advisory groups, and panels at NCI include one or more qualified pediatric oncologists, as appropriate.
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