WASHINGTON, DC – Today, in the Oval Office, President Trump signed into law The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (S. 292), which was authored by U.S. Senator Jack Reed.
Reed’s bipartisan bill, which has been called “the most comprehensive childhood cancer legislation ever introduced into Congress,” will help find new treatments, accelerate research, and improve outcomes for patients and families battling childhood cancer.
The STAR Act will expand funding to research childhood cancers, explore effective treatment options, identify and track childhood-cancer rates, and enhance the quality of life for childhood cancer survivors. It authorizes up to $30 million annually as well as key research initiatives, such as biorepositories at the National Institutes of Health (NIH) and surveillance at the U.S. Centers for Disease Control and Prevention (CDC), while focusing on some of the least-studied and understood childhood cancers.
“This is a major step in the right direction when it comes to improving outcomes and treatment options for pediatric cancer,” said Senator Reed. “We passed this law on behalf of every child who had to miss their graduation to attended chemotherapy sessions; or had to miss out on doing what they love in order to undergo another round of treatment. We did it for moms and dads who spent sleepless nights worrying whether their kids would make it. We did it for survivors, for those we lost, and those who continue to advocate on behalf of loved ones and keep their memories alive. Those individuals -- kids, moms, dads, grandparents from Rhode Island and across the country -- helped us get this done in the hope that other families would never have to face the same steep odds. They put the star in STAR Act. Their support made all the difference, and this new law should make a world of difference.”
Senator Reed also gave special credit to the army of relentless childhood cancer research advocates across the country who supported the bill, including individuals like Rhode Island’s own Rebekah Ham, and her daughter, Grace Carey, a cancer survivor who was diagnosed with medulloblastoma at age five, who worked with the St. Baldrick’s Foundation to build support for the bill.
“St. Baldrick’s is proud to have played a role in the advocacy strategy that led to the passage of the STAR Act,” said Kathleen Ruddy, CEO of the St. Baldrick’s Foundation. “We need safer and less toxic treatments so that when children like Grace survive cancer, their unique talents and abilities are preserved and they can live long and healthy lives. We thank the members of Congress, including Senator Reed, along with the entire childhood cancer community who joined together to make this day possible. St. Baldrick’s looks forward to continued coordination to ensure that kids with cancer get access to cures and better treatments.”
Reed’s bill was passed the U.S. House of Representatives on May 22 and was previously approved by the full U.S. Senate on March 22, 2018. Senator Reed credited Shelley Moore Capito (R-WV) for being a leading bipartisan advocate for the bill, which also got critical support from Senators Chris Van Hollen (D-MD) and Johnny Isakson (R-GA), and a large group of bipartisan Senators. U.S. Representatives Michael McCaul (R-TX) and Jackie Speier (D-CA) led the effort in the U.S. House of Representatives.
Now that has been signed into law, the Childhood Cancer STAR Act 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 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.
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): The Childhood Cancer STAR Act will require 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.