Childhood Cancer STAR Act Signed

Written on June 6, 2018

The Childhood Cancer Star Act of 2017 is now law, a landmark moment for the childhood cancer community. You can find a summary of the new law, signed on June 5, 2018, below.

The passage of the STAR Act was a true community effort that involved years of patience, hard work, and collaboration. The childhood cancer community and Children’s Cancer Partners of the Carolinas (CCP) are grateful to our many champions in Congress, who successfully shepherded this bipartisan bill through both chambers. As a friend of the Coalition Against Childhood Cancer, we were proud to play a role in advancing and advocating for this legislation alongside CAC2’s advocacy partner coalition, the Alliance for Childhood Cancer, and the entire childhood cancer community.

Meaningful legislation that represents a consensus of community priorities is difficult to craft and even more challenging to pass through Congress. The STAR Act is a milestone achievement that demonstrates that people and legislators can work together to address the challenges faced by families of the 16,000 children diagnosed with cancer every year.

“We applaud these advances at the national policy level, and look forward to future practical benefits that will make life a little better for our children and their families,” said CCP Executive Director Laura Allen. “Meanwhile, we are working hard every day to overcome the dreadful inequities that make childhood cancer such an overwhelming challenge for all families, especially those in rural and low income circumstances.”

CCP encourages families impacted by childhood cancer to reach out and thank their Senators, Representative, and the President for passing this life-saving legislation. Our community needs ongoing support from lawmakers to secure the appropriations required to enact the provisions of this new law.

Law Summary: The STAR Act amends the Public Health Service Act to authorize the National Institutes of Health (NIH) to provide support to collect the medical specimens and information of children, adolescents, and young adults with selected cancers that have the least effective treatments in order to achieve a better understanding of these cancers and the effects of treatment.
The national childhood cancer registry is reauthorized through FY2022 and revised to authorize the Centers for Disease Control and Prevention to award grants to state cancer registries to improve tracking of childhood cancers.
The Department of Health and Human Services (HHS) may: (1) support pilot programs to develop or study models for monitoring and caring for childhood cancer survivors throughout their lives, (2) establish a task force to develop and test standards for high-quality childhood cancer survivorship care, and (3) carry out a demonstration project to improve care coordination as childhood cancer survivors transition to adult care.
HHS must convene a Workforce Development Collaborative on Medical and Psychosocial Care for Pediatric Cancer Survivors.
The NIH may support research on: (1) outcomes for, and barriers faced by, pediatric cancer survivors within minority or medically underserved populations; and (2) follow-up care for pediatric cancer survivors, including research on the late effects of cancer treatment and long-term complications.
The Government Accountability Office must make recommendations to address barriers to childhood cancer survivors obtaining and paying for adequate medical care.

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