WASHINGTON, DC – After years of hard work and with childhood cancer survivors and their families leading the way, the U.S. Senate today 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.

The National Brain Tumor Society called Reed’s bill, which he first introduced in 2015: “the most comprehensive childhood cancer legislation ever taken up by Congress.”

“This is a huge victory for everyone who has been impacted by childhood cancer.  It will go a long way toward advancing pediatric cancer research and providing a lot of courageous kids and their families with some additional help.  And we simply couldn’t have done it without the help of so many caring families and strong bipartisan support,” 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.  We’ve got to make sure childhood cancer research has the funding it deserves.  And 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.”

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).  And according to the American Childhood Cancer Organization (ACCO), an estimated 15,780 children between the ages of birth and 19 years of age are diagnosed with cancer each year.  ACCO also estimates that about 1 in 285 American children will be diagnosed with cancer before their 20th birthday. 

The Childhood Cancer STAR Act builds on Senator Reed’s Caroline Pryce Walker 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.

“We’ve been at this bill a long time, and we are going to keep at it until we get it done,” continued Reed.  “I am so inspired by the families who’ve led this fight against childhood cancer, particularly kids.  Sometimes, the smallest voices can make the biggest difference.  They are the driving force behind this effort.  We are going to get the Childhood Cancer STAR Act passed for them, and we are going to continue this fight to help more children live long, healthy, cancer-free lives and ultimately find a cure for childhood cancer.”

Reed’s bill had the backing of 55 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), Catherine Cortez Masto (D-NV), Bernie Sanders (I-VT), Benjamin L. Cardin (D-MD), Tammy Baldwin (D-WI), Doug Jones (D-AL), Mike Crapo (R-ID), John McCain (R-AZ), Patty Murray (D-WA), James Risch (R-ID), Robert Menendez (D-NJ), and Maggie Hassan (D-NH).

Now that the Childhood Cancer STAR Act has been approved by the full U.S. Senate, it must also be voted on by the U.S. House of Representatives.  Companion legislation (H.R. 820) has been introduced by 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.