PROVIDENCE, RI – The push to advance pediatric cancer research and improve outcomes for kids with cancer is getting a major boost from Rhode Islanders who know firsthand the value of childhood cancer research and treatment.

U.S. Senator Jack Reed (D-RI) has introduced bipartisan, landmark legislation to help researchers accelerate medical breakthroughs.  Reed’s bill, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, would authorize expanded funding to research childhood cancers, identify and track childhood-cancer rates, and enhance the quality of life for childhood-cancer survivors.

Today, Senator Reed joined with survivors, doctors, and researchers at the Warren Alpert Medical School of Brown University to urge Congress to pass the Childhood Cancer STAR Act to help fund innovative research and help more kids beat pediatric cancer.

“I am so inspired by the families who’ve led this fight against childhood cancer, particularly young people.  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,” 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 and improved outcomes for children.”

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.”

"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," said 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. 

With the help of advocates across the Ocean State, Reed’s bill is on the brink of becoming law.  Reed credits Rhode Islanders like Rebekah Ham and her daughter, Grace Carey, who was diagnosed with medulloblastoma at age five, and a network of pediatric cancer survivors and their families, for helping to build nationwide support for the STAR ACT.  Along with pediatric hospitals like Hasbro, non-profits like St. Baldrick’s Foundation, and grassroots organizations like 46 Mommas -- so named because every weekday approximately 46 mothers across North America learn their child has cancer -- Reed and the bill’s community backers got the legislation unanimously approved by the U.S. Senate in March. 

“We love all that the STAR Act stands for,” said Rebekah Ham, a Rhode Island resident and mother of cancer survivor Grace Carey, who stood beside her mother at the event.  “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.  Grace and I were excited and honored to thank Senator Reed in person for sponsoring the STAR Act, and now we get to do it again today.  We are hopeful that with Senator Reed’s leadership, the STAR Act will become law and create the changes that kids need.”

The U.S. House of Representatives is scheduled to take up and pass the Childhood Cancer STAR Act this week and send it to the President’s desk to be signed into law.

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.