Two years ago, I stood in the Oval Office and watched as the Childhood Cancer STAR Act was signed into law. Observing this historic moment, I thought of the thousands of advocates, organizations, and children who worked tirelessly to support this legislation. From the first roundtable with the Alliance for Childhood Cancer, Coalition Against Childhood Cancer, and other childhood cancer organizations; to the Hill days, with thousands of advocates holding meetings with members of Congress, including the brave children who spoke so eloquently about the urgency of making childhood cancer a national priority; the emails; the calls; and the social media.
I thought of the incredible bipartisan support of our Hill champions. Senators Jack Reed, Shelley Moore Capito, Chris Van Hollen, Johnny Isakson, along with Representatives Michael McCaul, Jackie Speier, Mike Kelley, and GK Butterfield and their staffs together tirelessly worked to create change for children in desperate need of a cure to both survive and thrive.
I thought of the many childhood cancer survivors whose journey is not easy or simple, who meet the challenges of survivorship head on every day.
I thought of the fact that pediatric brain tumors remain the number one reason children die of disease in this country and that this legislation could help change that reality.
But most of all, I thought of my son, Mason, who did not survive his brain tumor, and the many children I carried in my heart as we advocated and worked on Capitol Hill every day.
National Brain Tumor Society, together with our many dedicated volunteer advocates, was a vital strategic partner in the passage of the Childhood Cancer STAR Act, bringing the voices and perspectives that are unique to the pediatric brain tumor community to the table. This continues to this day, as funding for this bill and support of pediatric brain tumor research remain core elements of the NBTS Legislative Agenda each year.
Critical to this effort, we continue to work closely with our advocacy partners across the childhood cancer community. Serving as the co-chair of the Alliance for Childhood Cancer’s Policy Committee, we help guide the collaborative effort of all of those who have, and continue to, back this legislation to ensure its many crucial provisions are adequately funded and effectively implemented. Just as the combined powers of advocacy and community made the signing of the STAR Act a reality, a united approach is central to this ongoing advocacy.
It’s with this in mind that, on the two-year anniversary of this bill becoming a law, we celebrate the progress that is being made to capitalize on the promise of the STAR Act. From the National Cancer Institute’s work on survivorship research and initial work on biospecimen collection to the CDC’s expansion of its early case-capture program, we have seen action and a willingness to engage with the patient advocacy community from these important agencies.
NBTS has been there every step of the way to support the STAR ACT and advocate for the needs of the pediatric brain tumor community. For our pediatric brain tumor community, this is our responsibility and promise to you as the implementation continues: to remain engaged, coordinated, and collaborative. We are committed and look forward to working together with our advocates, coalition partners, and government agencies to ensure the Childhood Cancer STAR Act successfully reaches its full potential and impact.
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