Community News–Childhood Cancer Advocates Support Successful 2025 Action Day!

ASK 1:  Prioritize a “Childhood Cancer Package”

Last year, the House of Representatives unanimously passed two bills with important provisions related to pediatric drug development, clinical trials, and access to care. Together, these bills represent the most influential childhood cancer legislation since the passage of the original Childhood Cancer STAR Act. This year, it is more important than ever that Congress uses the first available opportunity to move this critical childhood cancer package over the finish line.

ASK 2. Protect Federal Funding for Childhood Cancer Research

Children with cancer rely on stable, federally funded research to discover new, less toxic treatments. Due to the smaller patient populations, drug companies do not have as strong an incentive to invest in new childhood cancer treatments and cures as they do for adults. As a result, grants from the National Institutes of Health (NIH) and the National Cancer Institute (NCI) awarded to research institutions around the country must fill the gap. Support from the NIH also funds the critical research infrastructure that makes nearly all childhood cancer research possible. Recently announced policy changes at the NIH, such as severe changes to infrastructure costs, threaten to significantly slow childhood cancer research, shutter research institutions, and pause vital clinical trials. Children with cancer and their families cannot wait.

• Stable federal funding is the lifeline for childhood cancer research and clinical trials.
• 80% of the 14,000 newly diagnosed children and adolescents each year rely on research institutions to provide life-saving care, with more than half enrolling in clinical trials.
• Any changes to NIH policy considered by the Administration or Congress must ensure children with cancer and their families aren’t harmed
• We urge Congress to once again fully fund two critical childhood cancer research programs – the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative.

ASK 3. Preserve Medicaid Coverage for Children and Families

Medicaid and the Children’s Health Insurance Program (CHIP) provide quality, affordable healthcare coverage for more than 37 million children, or roughly half of all children in the US. For children with cancer, Medicaid plays an especially critical role as a safety net. In many states, a child is eligible for Medicaid and CHIP coverage upon receiving a childhood cancer diagnosis, providing necessary and timely access to quality, uninterrupted care.

Any changes to Medicaid’s financing structure, such as block grants and per capita caps, or other policies that shift costs to states, such as cuts to the federal medical assistance percentage (FMAP), would impact not only childhood cancer patients and families but also the entire pediatric healthcare system overall. Further, cuts to eligibility and benefits and the addition of any barriers to coverage, such as work requirements, would severely harm children with cancer and their families.

• Medicaid plays an especially critical role as a safety net for childhood cancer patients, covering more than half of children in the US, including 1 in 3 newly diagnosed children
• We urge members of Congress to protect children with cancer and their families and prevent any changes to the Medicaid program that cut needed funding, restrict access, or reduce the quality of services.