ACCO, as a founding member of the Alliance for Childhood Cancer would like to sincerely thank the more than 200 members of the childhood cancer community who gathered together in Washington, DC on May 1st and 2nd to advocate on behalf of the childhood cancer community. Your support, your dedication, and above all, your passion during those two days helped to bring us closer to our goal of ensuring that childhood cancer is recognized and acted upon as a national child health priority.
We would also like to thank the Members of Congress who have agreed to add their names as co-sponsors to the Childhood Cancer STAR Act and support for including language from the RACE for Children Act in the FDA User Fee Bill (PDFUA). We want to also give an especially big “Thank You” to those Senators and Representatives who took time out of their busy schedule to meet with us, to listen to our stories and to understand the critical importance of these bills to our families. Specifically, we would like to thank:
• Representative Michael McCaul (R-TX), who stopped by to show his support during Monday’s advocacy training; Representative McCaul has been the lead House Sponsor for the STAR Act and is co-chair of the House Childhood Cancer Caucus.
• Senator Jack Reed (D-RI), who shared his words of wisdom with us Tuesday morning as we headed off to a day of meetings with our Members of Congress on “The Hill”.
Finally, we would like to thank:
• Thomas Rice, Senior Health Advisor to Congressman McCaul for his thoughts and advice on the STAR Act;
• Rita Habib, Senior Health Advisor to Senator Michael Bennet (D-CO) for her thoughts and advice on inclusion of language from the RACE for Children Act into the FDA User Fee Bill (PDUFA); and
• David Pugach, Director of Federal Relations for the American Cancer Society Cancer Action Network (ACS CAN).
Thank you for giving us a deeper understanding of these two critical pieces of legislation and for sharing your advice on successful advocacy strategies.
2017 Action Days Goal:
Cosponsor the Childhood Cancer STAR Act; Include language from the RACE for Children Act in the FDA User Fee Bill (PDUFA); and Increase FY 2018 funding for the NIH and NCI!
The goal of the 2017 Childhood Cancer Action Days was to give members of the childhood cancer community, including parents, children with cancer, survivors, healthcare professionals and advocacy groups the opportunity to learn and implement effective advocacy approaches specifically relating to childhood cancer. This two-day event started with a day of formal advocacy training where participants learned critical “tips of the trade” from experienced advocacy experts within the childhood cancer community. On Tuesday, after an inspirational breakfast meeting, participants were off to “The Hill” to meet with their Members of Congress and staff in person to share their stories and show their support for childhood cancer issues currently pending before Congress.
During these amazing in-person meetings, advocates focused on three very specific requests:
(1) Co-sponsor the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act (H.R. 820/S. 292). This is the most comprehensive childhood cancer act ever taken up by Congress and has enjoyed broad bi-partisan support; it was passed unanimously by the House of Representatives in December 2016 and needs to pass in the House and the Senate during the current administration.
(2) Support a FY 2018 $2 billion increase for the National Institutes of Health (NIH). Supporting this increase will help maintain the momentum of federal funding approved by both the House and the Senate in 2016 and the recent $2 billion increase in FY ‘17.
(3) Include the RACE for Children Act in the FDA User Fee Bill (PDUFA). This would give the FDA the authority to require any new cancer drug to be studied for its effectiveness for pediatric cancers for which the molecular target of the cancer drug is relevant.
Advocacy is Ongoing: Keep the Pressure On!
2017 Action Days are over, but the fight for the Childhood Cancer STAR Act and the critical provisions in the RACE for Children Act goes on and will not stop until we achieve our goal! Whether you attended 2017 Action Days or are interested in adding your support now, you can add your voice to the growing chorus of support for these two critical pieces of legislation. If you would like more information on the Childhood Cancer STAR Act and the inclusion of the RACE for Children Act within the FDA User Fee Bill, or would like to contact your Members of Congress to request their support, we invite you to visit https://www.acco.org/takeaction/ for our easy-to-use advocacy tool!
About American Childhood Cancer Organization
American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO is a founding member of the Alliance for Childhood Cancer. Together, we work to promote the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.
For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.