7/29/2015 — 

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.