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National Brain Tumor Society Statement On The Childhood Cancer STAR ACT

Published on February 3, 2017 in Press Release

Today, the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act was reintroduced in the 115th Congress as H.R. 820 in the United States House of Representatives and S. 292 in the United States Senate.

The Childhood Cancer STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress. This bipartisan bill is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, and providing enhanced resources for survivors and those impacted by kids’ cancers. The Childhood Cancer STAR Act of 2015 (H.R. 3381, S. 1883) was passed by the U.S. House of Representatives during the 114th Congress, but did not clear the Senate before the end of the session this past December 2016.

The following is a statement from David F. Arons, JD, Chief Executive Officer, National Brain Tumor Society, on the reintroduction of the Childhood Cancer STAR Act:

“The reintroduction of the Childhood Cancer STAR Act in the 115th Congress is a meaningful step toward providing vital resources and support to the fight against pediatric cancers, including brain tumors. With its introduction early in the Congress, we are hopeful legislators will move quickly to pass the STAR Act in the House and Senate.

Brain tumors are, unfortunately, the leading cause of cancer death in all children and adolescents ages 0-19, having recently surpassed leukemia for this dubious distinction. Brain tumors are now responsible for three out of every 10 pediatric cancer deaths. These alarming statistics highlight the all-too-real repercussions of inadequate national attention and policy solutions for our most vulnerable patients.

Thankfully, the Childhood Cancer STAR Act shines a bright light on pediatric cancer research, drug development, and treatment needs. This comprehensive and bipartisan legislation makes much-needed investments in research, including the collection of biospecimens and improvement in the monitoring of trends that inform scientific efforts and ultimately the development of new treatments, as well as enables the creation of survivorship care.

As a leading organization representing the estimated more than 28,000 children living with brain tumors in the United States, their families and loved ones, we commend the leadership and commitment of the bills’ original sponsors: Sens. Shelley Moore Capito (R-WV), Jack Reed (D-RI), Chris Van Hollen (D-MD) and Johnny Isakson (R-GA) as well as Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA) and G.K. Butterfield (D-NC). We also commend fellow members of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer, who have tirelessly advocated for the bill.

Again, we urge Congress to take-up this legislation at its earliest opportunity and ensure that it is swiftly put to vote and approved for the president’s signature. Despite dedicated efforts, pediatric brain tumor research has not generated advances that have translated into meaningful clinical benefit for children with this devastating disease in decades. This is unacceptable and underscores the absolute urgency with which pediatric brain tumors, and all cancer, need to be addressed as a biomedical research priority moving forward. While we just missed the possibility of seeing this legislation passed in 2016, we must ensure we do not lose this opportunity to make a major impact for kids with cancer in 2017.

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