WASHINGTON, DC – In an effort to help thousands of children who undergo cancer treatment each year, U.S. Senator Jack Reed (D-RI) is getting set to introduce the Childhood Cancer STAR Act.  This 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 week, Reed will join with more than 300 cancer advocates from across the country, including children cancer survivors and their families, policy makers, and cancer research experts, for the Alliance for Childhood Cancer’s fourth annual Childhood Cancer Action Days on June 15 and 16 in Washington, DC.  During that time, individuals and families visiting Capitol Hill will meet with their elected representatives and ask them to support initiatives like the Childhood Cancer STAR Act that can improve research, treatment, and outcomes for children with cancer. 

Meanwhile, advocates nationwide are expected to join the conversation online by calling on Congress to #StepUp for more funding.  Reed is asking Rhode Islanders to join him on social media using the hashtags #StepUp and #childhoodcancer to let others know they support making childhood cancer research a national priority.

“Too many young people's lives have been cut short by cancer.  These kids and their families who’ve battled this disease inspire us to take action.  I hope Rhode Islanders will join us on social media and encourage Congress to #StepUp and fund needed research into finding cures and developing better treatments for pediatric cancers,” said Reed.  “The Childhood Cancer STAR Act will help young cancer patients and their families get access to potentially life-saving treatments, support survivors, and move us another step closer toward our goal of ending pediatric cancer.”

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, 15,780 children and adolescents up to 19 years of age were diagnosed with cancer within the last year and 1,960 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.

SUMMARY: The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2015

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act would improve efforts to identify and track childhood cancer incidences, improve the quality of life for childhood cancer survivors, ensure publicly accessible expanded access policies that provide hope for patients who have run out of other options, and identify opportunities to expand the research of therapeutics necessary to treat the 15,780 children diagnosed with cancer in the U.S. every year. 

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 Patients Access to Publicly Available Compassionate Use Policies:  Compassionate use policies – the process by which a patient with a serious or life-threatening illness can be granted access to new, unapproved therapies outside of clinical trials, when there is no comparable alternative – are often challenging for patients to navigate.  This legislation would ensure that pharmaceutical companies have publicly accessible compassionate use policies for drugs treating serious or life-threatening conditions, and would require FDA to finalize its guidance for industry on the issue.

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.