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
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