Pending Federal Legislation – Take Action

H.R. 1620, Finn Sawyer Access to Cancer Testing Act — The Finn Sawyer ACT will provide CMS (Medicare, Medicaid and CHIP) coverage for cancer patients to receive broad-spectrum molecular diagnostics at the time of their cancer diagnosis.

You can read more about the bill here:  Finn Sawyer ACT

H.R. 1262/S. 932 The Give Kids a Chance Act of 2025 — The Give Kids a Chance Act of 2025 combines two critical initiatives for drug development for children with cancer — the original Give Kids a Chance Act and the Creating Hope Reauthorization Act.

• The Give Kids a Chance Act component of the bill removes regulatory hurdles and authorizes the FDA to direct companies to study combinations of cancer drugs in kids in addition to adults. The Give Kids a Chance Act ensures children can have the same opportunities for treatments as adults, increasing their chances for cures.
• The Creating Hope Reauthorization Act component provides incentives for companies to develop drugs expressly for kids with cancer and other life-threatening illnesses even though the markets for such drugs are so small. This law has resulted in over 60 new drugs for kids with cancer and other life-threatening illnesses since it was first passed in 2012.

You can read more about the bill here:  Give Kids a Chance, 2025

S. 705 Innovation in Pediatric Drugs Act of 2025 — This bill would strengthen the development of childhood cancer drugs by improving the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) and build upon the promise of the Research To Accelerate Cures and Equity (RACE) Act. It would amend PREA to lift its orphan exemption, ensuring that children with rare diseases can benefit fully from the pediatric research requirements and give FDA the authority it needs to ensure that legally required pediatric studies are completed in a timely way. It would amend BPCA to increase the authorization level of this program to $50 million to keep up with the increasing need for and cost of these studies.

You can read more about this bill here: Innovations in Pediatric Drugs, 2025

Appropriations Requests:  

NIH and NCI Funding

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.

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.