[Congressional Record Volume 161, Number 121 (Wednesday, July 29, 2015)]
[Senate]
[Page S6138]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. REED (for himself and Mrs. Capito):
  S. 1883. A bill to maximize discovery, and accelerate development and 
availability, of promising childhood cancer treatments, and for other 
purposes; to the Committee on Health, Education, Labor, and Pensions.
  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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