WASHINGTON, DC – In an effort to help thousands of children who undergo cancer treatment each year, U.S. Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) today introduced the Childhood Cancer STAR Act.  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.

“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.  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,” said Senator Reed.

“This bipartisan legislation will continue the advances in research, prevention and care for our loved ones and families impacted by childhood cancer,” said Senator Capito. “The Childhood Cancer STAR Act gives parents and patients access to the information they need to make vital decisions about treatment and care post-treatment. This legislation will also give those who understand the unique needs of childhood cancer patients a seat at the table when decisions about cancer care are taking place.”

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.

U.S. Representatives Michael McCaul (R-TX), Chris Van Hollen (D-MD), and Jackie Speier (D-CA) are introducing the legislation today in the U.S. House of Representatives.

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

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, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.

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– the process by which a patient with a serious or life-threatening illness can be granted access to therapies still in development and outside of the clinical trial setting, when there is no comparable alternative – is often challenging for patients and their doctors to navigate.  This legislation would ensure that pharmaceutical companies have publicly accessible compassionate use policies and would require FDA to finalize its guidance and address regulatory uncertainties for industry on the issue.

Ensuring 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.

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