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Legislation to help thousands of children who undergo cancer treatment each year took an important step forward today when the Senate Health, Education, Labor, and Pensions (HELP) Committee unanimously passed the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (S. 292).  The bipartisan bill was written by U.S. Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) and was introduced last February with critical support from 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.

“This is a positive step toward advancing pediatric cancer research and providing a lot of courageous kids and their families with some additional help,” 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.”

“The Childhood Cancer STAR Act will help some of our country’s youngest cancer patients by encouraging new developments in both research and treatment,” Senator Capito said. “I know this legislation will make an important difference in the lives of children with cancer, as well as childhood cancer survivors, and their families. It’s exciting to see our bipartisan bill advance in the Senate, and I will continue working the Senator Reed and our colleagues to make sure it’s passed.”

“There are unique barriers to studying childhood cancer that are slowing and preventing the next big breakthrough in treatment, and the Childhood STAR Act will help address this issue. It is an important step forward in the fight against pediatric cancer and will bring hope to thousands of children across the country,” said Senator Van Hollen. “Maryland is proud to be home to NIH, which is the gold standard of medical research — this bill will allow them to continue to study this disease and improve the quality of life for survivors. Ultimately, this will save lives and get us closer to the day that no parent has to fear losing their children in the face of a cancer diagnosis.”

“I’m so pleased that we have taken another crucial step today toward increasing research to develop new treatments and new therapies to cure the devastating effects of childhood cancer,” said Senator Isakson. “I encourage the Senate to quickly pass this legislation to help find the right cures for our youngest patients.”

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 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.

Today, the bill has 44 Senate cosponsors.  In addition to Reed, Capito, Van Hollen, and Isakson, it is also backed by Senators Jeanne Shaheen (D-NH), Marco Rubio (R-FL), Kirsten Gillibrand (D-NY), Cory Booker (D-NJ), Susan Collins (R-ME), Angus King (I-ME), Christopher Coons (D-DE), David Perdue (R-GA), Chuck Grassley (R-IA), Debbie Stabenow (D-MI), John Kennedy (R-LA), Sheldon Whitehouse (D-RI), Bill Cassidy (R-LA), Richard Blumenthal (D-CT), Todd Young (R-IN), Robert Casey (D-PA), Joe Manchin (D-WV), Joni Ernst (R-IA), Bill Nelson (D-FL), Rob Portman (R-OH), Deb Fischer (R-NE), Sherrod Brown (D-OH), Orrin Hatch (R-UT), Gary Peters (D-MI), Lisa Murkowski (R-AK), Tammy Duckworth (D-IL), Edward Markey (D-MA), Dean Heller (R-NV), Amy Klobuchar (D-MN), Roger Wicker (R-MS), Roy Blunt (R-MO), Jeff Merkley (D-OR), Joe Donnelly (D-IN), Dianne Feinstein (D-CA), Chuck Schumer (D-NY), Michael Bennet (D-CO), Patrick Leahy (D-VT), Tim Kaine (D-VA), Tina Smith (D-MN), Thom Tillis (R-NC), and Catherine Cortez Masto (D-NV).

Now that the Childhood Cancer STAR Act has been approved by the HELP Committee, it must be debated and passed by the full U.S. Senate.  Similar legislation is working its way through the U.S. House of Representatives under the bipartisan leadership of U.S. Representatives Michael McCaul (R-TX) and Jackie Speier (D-CA).

Summary: The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (S. 292)

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, 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 expert in pediatric oncology on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.