2/02/2017 — 

WASHINGTON, DC – In an effort to help thousands of children who undergo cancer treatment each year, U.S. Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) today introduced the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017.  Reed and Capito were joined in introducing the bill by Senators Chris Van Hollen (D-MD) and Johnny Isakson (R-GA).  This bipartisan legislation will 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. 

“With far too many children’s lives tragically cut short by cancer, it’s critical that we do all we can to help the brave young people who are fighting these battles,” said Senator Reed.  “The Childhood Cancer STAR Act will bring needed assistance to children with cancer and their families by expanding opportunities for research on childhood cancer and providing new strategies to help survivors overcome late health effects, such as secondary cancers.  It is my hope that these efforts will lead to life-saving treatments for children and bring us closer to our ultimate goal of ending pediatric cancer once and for all.”

“We must continue making advancements that can help save the lives of those battling childhood cancers.  The Childhood Cancer STAR Act will contribute to new developments in research and treatment, and has the potential to positively impact tens of thousands of lives.  I’m proud to reintroduce this very important legislation for patients and families in West Virginia and across the country,” said Senator Capito.

“There are unique barriers to studying childhood cancer that are slowing and preventing the next big breakthrough in treatment,” said Senator Van Hollen.  “We need a strategy to give every child with cancer the hope of a long and healthy life, and the STAR Act is a bipartisan approach to delivering that hope. By taking action to better study this disease and improve the quality of life for survivors, this bill will ultimately save lives and get us closer to the day that no child has to face the diagnosis of cancer.”

"It is extremely important that we increase research and treatment of the devastating effects of childhood cancer," Isakson said.  "This critical legislation is a positive step forward to help find the right cures for our youngest patients.”

Childhood cancer research has progressed in recent years, but cancer is still the leading cause of death by disease past infancy among children in the United States, according to NIH’s 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.

The Childhood Cancer STAR Act builds on Senator Reed’s Conquer Childhood Cancer Act, which was signed into law in 2008 to help increase support for pediatric cancer research and ensure that more children have access to lifesaving cancer treatment.

U.S. Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA), and G.K. Butterfield (D-NC) are introducing the legislation in the U.S. House of Representatives.

Summary: The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act would 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 would authorize 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 would authorize grants to state cancer registries to identify and track incidences of child, adolescent, and young adult cancer.  This funding would 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 their disease or treatment, including secondary cancers and organ damage. This legislation would enhance research on the late effects of childhood cancers, including a study on insurance coverage and payment of care for childhood cancer survivors; 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. 

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