[Congressional Record Volume 163, Number 18 (Thursday, February 2, 2017)]
[Senate]
[Page S659]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. REED (for himself, Mrs. Capito, Mr. Van Hollen, and Mr. 
        Isakson):
  S. 292. 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 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.

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