[Congressional Record Volume 168, Number 70 (Thursday, April 28, 2022)]
[Senate]
[Page S2221]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. REED (for himself, Mrs. Capito, Mr. Van Hollen, and Ms. 
        Murkowski):
  S. 4120. 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 Murkowski in introducing the Childhood Cancer 
Survivorship, Treatment, Access, and Research, STAR, Reauthorization 
Act of 2022. 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, Butterfield, and Kelly are 
introducing companion legislation in the House of Representatives.
  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, I 
introduced bipartisan legislation that eventually was signed into law 
in 2008 as the Caroline Pryce Walker Conquer Childhood Cancer Act--the 
first effort to provide increased research and improved treatment 
options for childhood cancers.
  Over the last several years, I have also had the pleasure of getting 
to know Grace Carey and her parents, Rebekah Ham and Russell Carey, of 
Providence, RI. Grace was diagnosed with brain cancer at 5 years old 
and stands as a proud survivor of childhood cancer. Grace and her 
family are powerful advocates in the fight against childhood cancer, 
having worked with the St. Baldrick's Foundation to support the 
original Childhood Cancer STAR Act, which I introduced in 2015 with 
Senator Capito and was signed into law in 2018.
  The STAR Act took 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 helped build a 
comprehensive children's cancer biorepository for researchers and 
improved surveillance of childhood cancer cases. Our reauthorization 
will build on these efforts and aims to make the biorepository easier 
for researchers to use, improving access to biospecimens.
  In addition, we must do more to ensure that children survive cancer 
and any late effects so they can live a long, healthy, and productive 
life. The STAR Act enhanced research on the late effects of childhood 
cancers, improved collaboration among providers so that doctors are 
better able to care for this population as they age, and began to 
explore improved models of care for childhood cancer survivors. Since 
implementation of the STAR Act, the National Cancer Institute has 
awarded over $16 million in new survivorship grants. It is critical 
that we reauthorize the STAR Act to continue funding these vital 
projects.
  I look forward to working with Senators Capito, Van Hollen, 
Murkowski, as well as Representatives McCaul, Speier, Butterfield, and 
Kelly, along with advocates like the St. Baldrick's Foundation, to 
build support for the Childhood Cancer STAR Reauthorization Act.

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