WASHINGTON, D.C. – On January 5, 2023, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2022, legislation authored by U.S. Senators Shelley Moore Capito (R-W.Va.) and Jack Reed (D-R.I.), was signed into law by President Joe Biden. The bill reauthorizes the Childhood Cancer STAR Act, the most comprehensive childhood cancer bill ever passed by Congress, for another five years.

The STAR Act, which was first passed in 2018 and signed into law later that year on June 5, 2018, helps advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing resources for survivors and those impacted by childhood cancer. Since being signed into law in 2018, the STAR Act has helped deliver over $120 million to fund promising childhood cancer research and assist patients and families battling cancer.

“I was incredibly proud to be part of the passage of the STAR Act in 2018, which has made an important difference in the lives of children with cancer, as well as childhood cancer survivors and their families. Since that time, the legislation has resulted in unprecedented opportunities and funding for childhood cancer research, allowed us to better understand and track the incidence of disease, and improved the quality of life for childhood cancer survivors. I’m thrilled to reauthorize this meaningful legislation, which will ultimately allow these opportunities to continue and bring us closer to a world without childhood cancer,” Senator Capito said.

BACKGROUND:

There are over 100 different subtypes of childhood cancers. Most new cancer diagnoses in children are for leukemia (28.1%) and brain/CNS cancers (26.5%), while malignant epithelial neoplasms and melanomas (23.3%) and brain/CNS cancers (21.9%) are top cancers for adolescents, according to Children’s Cancer Cause.

Childhood cancer research has progressed in recent years, but after accidents, cancer is still the second leading cause of death in children ages 1 to 14, according to the American Cancer Society. Health experts estimate that nearly 10,500 children in the United States under the age of 15 were diagnosed with cancer last year.

Specifically, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2022 will:

  • Expand 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 legislation reauthorizes and expands existing efforts at the National Cancer Institute (NCI) 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.
  • Improve 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.
  • Help Improve Quality of Life Opportunities for Childhood Cancer Survivors: Unfortunately, even after beating cancer, as many as two-thirds of survivors suffer from late effects of their disease or treatment, including secondary cancers and organ damage. This legislation 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 establish a new pilot program to begin to explore innovative models of care for childhood cancer survivors.
  • Ensure Pediatric Expertise at the National Institutes of Health (NIH): Requires the inclusion of at least one expert in pediatric oncology on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.

 

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