Happy Anniversary, Childhood Cancer STAR Act! Signed into Law One Year Ago Today

by Danielle Leach
June 5, 2019

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act – the most comprehensive childhood cancer bill in history – was signed into law one year ago today!

2013 St. Baldrick’s Ambassador Matthias advocating on Capitol Hill

This is remarkable for several reasons. First, it proves what our community can do if it has a firm goal, remains united, and makes the case to Congress why childhood cancer must be a much higher national priority. By acting together, we were successful in securing 372 Members of Congress (86% of the House of Representatives) and 55 Senators to formally cosponsor this bill. This took an enormous amount of advocacy, education, cajoling, sweat and determination; but in the end, it proved successful.

The passage of STAR was remarkable for another important reason: As you may have noticed, there isn’t much agreement in Washington on anything these days. Having the support of Republicans and Democrats is critical to passing legislation. Thanks to the tenacity of the childhood cancer community, we convinced both parties to sit down at the table and agree to prioritize childhood cancer. It is a bipartisan triumph.

The STAR Act has been the law of the land for a full year now. What does that mean for kids with cancer? Happily, there is much good news to report.

2018 St. Baldrick’s Ambassador Julia along with her parents, Katie Mazzola (Legislative Correspondent for Congressman Rob Wittman), and other members of the VA delegation at Action Days 2019

New Research in Survivorship: On January 11, the National Cancer Institute (NCI) announced they would be funding a new series of research grants entitled, “Improving Outcomes for Pediatric, Adolescent and Young Adult Cancer Survivors.” Motivated by the passage of the STAR Act, the NCI anticipates funding 6-8 new research project grants to develop interventions to prevent, mitigate, and manage adverse disease- and treatment-related outcomes and to test and refine models of care for survivors of pediatric and AYA cancers across their lifespan. Over the next 5 years, the STAR Act will allow for $25 million to fund this vital research.

Childhood Cancer Surveillance Program: The CDC (Centers for Disease Control and Prevention) has begun work to expand and dramatically improve the national system of Childhood Cancer Surveillance. Made possible by funding provided by the STAR Act, the CDC is working to expand the number of states that have comprehensive childhood cancer surveillance programs and to create a new cloud-based reporting system to ensure that all reporting states will, for the first time, meet the goal of completing the comprehensive reporting within the mandated 30 days.  This cooperative program will help cancer registries collect and make the data on pediatric and young adult cases more easily accessible to researchers throughout the US.

NIH National Childhood Cancer Biorepository System: The National Institutes of Health (NIH) currently supports different biorepository networks, each serving separate and distinct purposes. The STAR Act would create a biorepository system that is more integrated and leveraged to better serve researchers, physicians and patients. This is critical since so many types of childhood cancer are relatively rare and it is exceedingly difficult to get enough data to conduct meaningful research. All of that will change with this more integrated biorepository system and has the potential to revolutionize how we conduct research into childhood cancer.

Members of the Action Days 2019 California delegation

St. Baldrick’s, along with the Alliance for Childhood Cancer, Coalition Against Childhood Cancer and the larger childhood cancer community, has been working closely with our champions on Capitol Hill to ensure that enough financial resources are provided to make this a reality. In May, the NCI hosted a major Childhood Cancer biorepository meeting featuring the leadership of the NCI, the officials that operate the current childhood cancer biorepositories and other key childhood cancer advocates and experts (including representatives from St. Baldrick’s Foundation) to begin the process of implementing the biorepository provisions of the STAR Act. 

A tremendous amount of progress has been achieved in the past year because of all your efforts to get the Childhood Cancer STAR Act signed into law. Happily, it is only the tip of the iceberg. At St. Baldrick’s, we are committed to ensuring that all your work in advocacy pays off to fully implement the STAR Act so that we can realize a substantive, positive impact on the lives of kids fighting cancer, and in the lives of those who have survived their initial cancer diagnosis. 

Group photo of the 46 Mommas on Capitol Hill

We have a long way to go, but today, let’s celebrate the one-year anniversary of the passage of the Childhood Cancer STAR Act. We should all be proud that by acting together, we are making real, positive change for kids fighting cancer.

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