Navigating Changing Relationships After a Child’s Brain Tumor Diagnosis
The Pediatric Brain Tumor Foundation is committed to making kids with brain cancer a national health priority. We’ve recently endorsed and are actively monitoring several key pieces of legislation that could help families facing a child’s brain tumor diagnosis.
Read our latest advocacy alert to learn more about this legislation and other important childhood cancer policy news. If one of your elected Senators or Representatives is not a co-sponsor of this legislation, you can contact their office and ask them to become a co-sponsor. Contact information for members of the Senate can be found here and House of Representatives here.
Have questions about a specific bill or how you can get more involved in the Pediatric Brain Tumor Foundation’s advocacy efforts? Reach out to Director of Advocacy Mike Henry at [email protected].
Since the original Gabriella Miller Kids First Research Act was signed into law in 2014, the Kids First program has driven progress in the medical community’s understanding of childhood cancer and other pediatric diseases. The law established the Ten-Year Pediatric Research Initiative Fund and authorized $12.6 million in annual funds for childhood disease research. It has also led to the founding of the Gabriella Miller Kids First Data Resource Center, a comprehensive data resource for research and patient communities meant to advance discoveries.
A one-year extension of funding for the original bill passed late last year. This new piece of legislation would extend funding for an additional five years. It’s imperative that advocates throughout the country ask their representatives to co-sponsor and pass this bill as soon as possible.
Introduced last month by Reps. Anna Eshoo of California and Michael McCaul of Texas, the Give Kids a Chance Act would give children access to the same innovative clinical trials and therapies afforded to adults.
Currently, the FDA is only authorized to direct pediatric cancer trials of single drugs. However, the overwhelming majority of pediatric cancer trial participants are those experiencing a relapsed cancer and their treatments are complex, time-sensitive, and rarely involve single-drug solutions. This bill would give the FDA authority to direct companies to study combinations of pediatric cancer drugs and therapies.
A full list of co-sponsors for the House version can be found here.
PBTF also joins our fellow advocacy groups in asking for the full funding of crucial pediatric cancer programs and research during the fiscal year 2024 appropriations process. Our asks include:
We urge all advocates to reach out to members of the House Appropriations’ Labor, Health and Human Services, and Education subcommittee.
We have been monitoring reports of possible shortages of crucial cancer drugs, including those used in pediatric brain tumor treatment. As part of our work with the Alliance for Childhood Cancer, we are gathering stories from families and providers that have been affected by drug shortages. These testimonials and insights will guide efforts to address this growing issue with legislators. If you have experienced a childhood brain cancer-related drug shortage or have questions about this advocacy initiative, please email [email protected].
Children with brain cancer deserve to be seen and heard. Advocates make that happen. If you’re interested in learning more about our advocacy program, sign up to receive future alerts at curethekids.org/advocate. Together, we can help educate policymakers and the public about the childhood cancer community’s biggest needs and concerns and make our voices heard.