Statements on Introduced Bills and Joint Resolutions

Floor Speech

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Mr. REED. Mr. President, I am pleased to be joined by Senator Capito in the introduction of the Childhood Cancer Survivorship, Treatment, Access, and Research, STAR, Act of 2015. This legislation is an extension of ongoing bipartisan efforts in the Senate over the past decade to get us closer to the goal of hopefully one day curing cancers in children, adolescents, and young adults. Representatives MCCAUL, VAN HOLLEN, and SPEIER are introducing the companion legislation in the other body.

I first started working on this issue after meeting the Haight family from Warwick, RI, in June of 2004. Nancy and Vincent lost their son, Ben, when he was just 9 years old to neuroblastoma, a very aggressive tumor in the brain.

The heart-wrenching story of Ben Haight highlights the importance of this legislation. It is my hope that one day Ben's story, and thousands of other children like him, will be one of survival. With the strong support of families like the Haights for increased research into the causes of childhood cancers and improved treatment options, I introduced bipartisan legislation that eventually was signed into law in 2008 as the Caroline Pryce Walker Conquer Childhood Cancer Act.

This was an important step. Yet, more work remains. With the STAR Act, we would take the next needed steps to 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.

If a treatment is working, doctors elsewhere should know immediately. The same should happen if a treatment isn't working, or if other major medical events occur during the course of a particular treatment. It is critical that doctors, nurses, and other providers are able to effectively communicate information about the disease, the treatment process, and what other health and development impacts children can expect to experience.

As such, the STAR Act reauthorizes the Caroline Pryce Walker Conquer Childhood Cancer Act to help create a comprehensive children's cancer biorepository for researchers to use in searching for biospecimens to study and would improve surveillance of childhood cancer cases.

Additionally, this legislation includes provisions dealing with issues that arise for survivors of childhood cancer. Unfortunately, even after beating cancer, as many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment; as many as one-fourth experience a late effect that is serious or life-threatening, including second cancers and organ damage.

We must do more to ensure that children survive cancer and any late effects so they can live a long, healthy, and productive life. 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 improved models of care for childhood cancer survivors.

This legislation also provides some clarity for patients and their physicians attempting to access new drugs and therapies from pharmaceutical companies. When a patient has run out of other options, the last thing they and their families need is to spend months being given the run-around trying to access a potential treatment.

Lastly, this bill will ensure more pediatric expertise at the National Institutes of Health to better leverage the research investment to improve pediatric cancer research by requiring the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and improving childhood health reporting requirements to include pediatric cancer.

I am pleased that the Childhood Cancer STAR Act has the support of the American Cancer Society Cancer Action Network, St. Baldrick's Foundation, and Children's Oncology Group, among others. I look forward to working with these and other stakeholders, as well as Senator Capito to urge the rest of our colleagues to join us in supporting this crucial legislation.

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