06.05.18

Capito Childhood Cancer Legislation Becomes Law

Senator Capito joins President Trump for signing ceremony at White House

WASHINGTON, D.C. – U.S. Senator Shelley Moore Capito (R-W.Va.) today joined President Donald J. Trump at the White House as he signed into law the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act—bipartisan legislation she introduced with Senator Jack Reed (D-R.I.) last February.
 
“This is an important day for all those affected by childhood cancer—kids who are currently battling cancer, survivors, and their loved ones. Not only will this legislation help all of these individuals, but it will also improve future outcomes and survival rates, providing a new sense of hope and optimism for the future,” Senator Capito said. “We’ve made great progress when it comes to improving cancer research and outcomes, and this legislation—now law—will help us continue and strengthen those efforts. This has been a true bipartisan effort and one that I am so proud to have helped lead with Senator Reed.”
 
While some progress has been made in pediatric cancer research—with deaths from childhood cancer declining by almost 70 percent over the last four decades—cancer is still the leading cause of death by disease past infancy among children in the United States, according to National Institutes of Health’s (NIH) National Cancer Institute (NCI). NCI estimates that nationwide, 10,380 children and adolescents up to 14 years of age were diagnosed with cancer within the last year, and 1,250 will die of the disease.
 
BACKGROUND 
 
The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act will expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for childhood cancer survivors.
  

  • Expanding Opportunities for Childhood Cancer Research: Due to the relatively small population of children with cancer and the geographic distance between these children, researching childhood cancer can be challenging. As such, the Childhood Cancer STAR Act authorizes the National Cancer Institute (NCI) to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain relevant clinical, biological, and demographic information on all children, adolescents, and young adults with cancer.

  • Improving Childhood Cancer Surveillance: Building upon previous efforts, this bill authorizes grants to state cancer registries to identify and track incidences of child, adolescent, and young adult cancer. This funding will be used to identify and train reporters of childhood cancer cases, secure infrastructure to ensure early reporting and capture of child cancer incidences, and support the collection of cases into a national childhood cancer registry.

 

  • Improving Quality of Life for Childhood Cancer Survivors: Unfortunately, even after beating cancer, as many as two-thirds of survivors suffer from late effects of the disease or treatment, including secondary cancers and organ damage. This legislation enhances research on the late effects of childhood cancers, improves collaboration among providers so that doctors are better able to care for this population as they age, and establishes a new pilot program to begin to explore innovative models of care for childhood cancer survivors.

 

  • Ensuring Pediatric Expertise at the National Institutes of Health (NIH): The Childhood Cancer STAR Act requires the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and improves childhood health reporting requirements to include pediatric cancer.

 

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