5/22/2018 — 

WASHINGTON, DC – Congress can’t seem to agree on much these days, but today the U.S. House of Representatives came together to pass a bill authored by U.S. Senator Jack Reed (D-RI) that will advance pediatric cancer research and improve outcomes for kids with cancer.

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

The bill, which was previously approved by the full U.S. Senate on March 22, 2018, now heads to the President’s desk to be signed into law. 

“We’ve been on this journey together with countless families who’ve battled cancer and are hoping to help others facing similar challenges.  It has taken years of hard work, and now, thanks to their efforts, this bill will be a real help to kids and families facing cancer.  The STAR Act will advance cancer research, help raise survivorship rates, and make cutting-edge treatments more readily available.  It will increase the amount of data doctors can share and provide new strategies to help survivors overcome the odds,” said Senator Reed.  “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, improved outcomes for children, and one day, cures.”

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.” 

Getting the bill passed was a bipartisan, bicameral effort.  The Childhood Cancer STAR Act received key backing in the U.S. Senate from Senators Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), and Johnny Isakson (R-GA).  It was championed by U.S. Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA), and G.K. Butterfield (D-NC) in the House.

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.

Speaking at an event yesterday at Brown University, Rebekah Ham stated: “We love all that the STAR Act stands for.  That’s why Grace and I traveled to DC in April with the 46 Mommas, a St. Baldrick’s Foundation campaign.  The 46 Mommas are a team of moms, all of whom have had kids diagnosed with cancer.  We come together annually from around the U.S. to advocate and raise money for childhood cancer research. Many of the 70 mommas who attended are bereaved.  They’ve had to say goodbye to their children because the research and treatments we have today are not enough.  These mommas were in DC to honor their children’s memories and to demand better for the kids who are diagnosed today, tomorrow, the next day, and the day after that.”

Also participating in yesterday’s Childhood Cancer STAR Act discussion were members of the Brown University Oncology Research Group, a division of the Alpert Medical School, which is a national leader on cancer research.

“As a physician, one of the hardest things is when you diagnose a patient with a disease and there's no treatment for it, or you wish there was a better, less toxic treatment,” stated Jack A. Elias, MD, senior vice president for health affairs and dean of medicine and biological sciences at Brown University.  “While science has made great advances and we now have miraculous treatments for many diseases, the sad part is the majority of advances have been made in adults, not children. We have to be conscious of the need to study diseases in children, to develop better therapies for them, and to deal with the consequences of those treatments. This legislation is designed to address these issues, and I'm grateful to the patient advocates and to Sen. Reed for getting it to this point.”

Today, cancer is 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. 

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

The Childhood Cancer 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.