Community News–Childhood Cancer Advocates Support Successful 2022 Action Day!
The Alliance for Childhood Cancer sends its thanks for a fantastic Action Day on April 28! Nearly 300 advocates from 39 states and Washington, DC participated and attended almost 200 meetings sharing their stories and asking for congressional support for important legislation and funding for childhood cancer. CAC2 members, Alliance members, and many others across the country had their voices heard.
This year’s top line asks:
- We urge Congress to provide significant funding increases for the National Institutes of Health (NIH) and National Cancer Institute (NCI) and to fully support childhood cancer programs, including providing $30 million to fully fund the Childhood Cancer STAR Act and $50 million to fully fund the Childhood Cancer Data Initiative.
- Please cosponsor the Childhood Cancer STAR Reauthorization Act to allow STAR Act programs to continue for the next five years (STAR Act one-pager).
- Please cosponsor H.R. 3089/S. 1544, the Accelerating Kids’ Access to Care Act, which reduces regulatory burdens to allow children with complex medical needs greater access to out-of-state providers who can best meet their needs (AKAC Act one-pager).
In addition, legislators were asked to consider a variety of policies important to our community:
Funding for the Department of Defense’s Peer-Reviewed Cancer Research Program and Supporting the Inclusion of Childhood Cancer Topic Areas – Childhood cancer affects families regardless of geographical location, occupation, or income, and impacts military families without prejudice. The Peer Reviewed Cancer Research Program (PRCRP) at the Department of Defense funds vital research to enhance our understanding of deadly tumors and more broadly cancer in children, adolescents, and young adults so that treatments can be more effective and less harmful to children.
H.R. 623/S. 1521, the Gabriella Miller Kids First Research Act 2.0 – The Gabriella Miller Kids First Pediatric Research Program helps researchers uncover new insights into the biology of childhood cancer and structural birth defects, including emerging scientific opportunities, rising public health challenges, and knowledge gaps. Since the program was enacted, Congress has provided $75 million to childhood cancer and disease research, with funding set to expire in Fiscal Year 2023. The Gabriella Miller Kids First Research Act 2.0 would redirect penalties levied against pharmaceutical manufacturers by the U.S. Securities and Exchange Commission for violating the Foreign Corrupt Practice Act towards the Kids First Pediatric Research Program at the National Institutes of Health (NIH).
H.R. 869/S. 289, the RISE Act – Clinical trials play a pivotal role in advancing pediatric cancer care and treatment. The COVID-19 pandemic has caused severe disruptions to federally-backed research, including pediatric cancer research. The Research Investment to Spark the Economy (RISE) Act provides $25 billion, including $10 billion for NIH, in needed relief to support independent research institutions, public laboratories, and universities throughout the country as well as provide needed regulatory flexibility so they can continue their work.
H.R. 3773/S. 1357, the PACT Act – Advancements in treatment and cures for children with cancer are not possible without sustained availability of federal research awards and consistent investments in the research workforce. The Pediatricians Accelerate Childhood Therapies (PACT) Act would create a new Trans-NIH career development award focused on early-career pediatric researchers as well as authorize a process to better coordinate and manage the pediatric research portfolio at the National Institutes of Health (NIH). This would include prioritizing research topic areas and work to align with the important research currently underway at NIH, including critical childhood cancer research.
H. Res. 404/S. Res. 231, DIPG Pediatric Brain Cancer Awareness Day Resolution – Diffuse Intrinsic Pontine Glioma (DIPG) is the leading cause of childhood brain tumor deaths. This resolution designating a DIPG Awareness Day will help spread awareness about this deadly disease, and support researchers in their efforts to find new therapies to treat DIPG.
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