Mr. President, I am pleased to be joined by Senators Capito, Van Hollen, and Isakson in the introduction of the Childhood Cancer Survivorship, Treatment, Access, and Research, STAR, Act of 2017. This…
Mr. President, I am pleased to be joined by Senators Capito, Van Hollen, and Isakson in the introduction of the Childhood Cancer Survivorship, Treatment, Access, and Research, STAR, Act of 2017. 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, Speier, Kelly, and Butterfield are introducing the companion legislation in the other body.
I first started working on this issue after meeting the Haight family from Warwick, Rhode Island in June of 2004. Nancy and Vincent lost their son, Ben, when he was just nine years old to neuroblastoma, a very aggressive tumor in the brain.
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. The STAR Act seeks 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 with a particular course of treatment.
As such, the STAR Act would reauthorize the Caroline Pryce Walker Conquer Childhood Cancer Act, creating a comprehensive children's cancer biorepository for researchers to use in searching for biospecimens to study and would improve surveillance of childhood cancer cases.
This legislation also 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.
Lastly, this bill would 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.
Last year, Senator Capito and I were able to get a provision of this bill included in the 21st Century CURES Act, which was signed into law at the end of the year. That provision will provide 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.
I am hopeful that we can build on this momentum. Indeed, it was heartening to see the House of Representatives pass the Childhood Cancer STAR Act as one of its last acts of the 114th Congress by a unanimous vote. While, the Senate was unable to follow suit as time ran out at the end of the year, HELP Committee Chairman Alexander and Ranking Member Murray have committed to working with Senator Capito and me to move the legislation this year.
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 our continued work with these stakeholders to build support for the bill and with the HELP Committee to see this bill advance through the legislative process.