Advocacy

Incorporate Kids in Cancer Action plan in Ct 2026-2032

Cancer Action Plan for Kids In CT extend paid family leave that aligns with multi-year treatment regimens and providing direct state stipends for hidden, non-medical living costs. To ensure comprehensive support, the plan should mandate proactive whole-family psychosocial screenings, fund independent patient navigators to manage insurance and billing hurdles, and require early pediatric palliative care alongside universal survivorship plans .

H.R. 1262 on the House side and S. 932 on the Senate side

The Mikaela Naylon’s Give Kids a Chance Act, a law requiring newly approved cancer drugs to be studied in kids with cancer also. Allowing combinations to be used with an investigative drug when a drug is being reviewed for FDA approval. Pharma is incentivized to created drugs for kids with rare cancers and diseases by giving review vouchers to speed FDA approval . This Act was signed into law on Feb 3rd,2026

H.R. 9938 on the House side and S. 4426 on the Senate side

The Promising Pathway Act 2.0 would grant time-limited provisional approval for drugs intended to treat life-threatening diseases that have 1) demonstrated substantial evidence of safety and 2) robust early evidence that establishes the benefit of the drug is likely to outweigh the risk of side effects. The drug will behave like an FDA approved drug so health insurance coverage for out-of-pocket expenses will be honored.

H.R. 7384 on the House side and S. 4583 on the Senate side

The Creating Hope Reauthorization Act entails the following: Pursuant to the Creating Hope Act 2012, a company that develops a drug for a pediatric rare disease – and receives FDA approval – also receives a voucher. The voucher comes with rights to faster FDA review of any future drug, enabling the voucher holder to receive an FDA “priority review” instead of a “standard review.” Expediting their future drugs to market.

the Lainie Jones Comprehensive Cancer Survorship Act H.R. 8839

The Act aims to build a coordinated, patient-centered care system for the nation's cancer survivors by establishing Medicare coverage and quality-based payment models for survivorship care planning. Additionally, the legislation improves Medicaid coverage for pediatric and adolescent survivors transitioning to adult healthcare, while expanding access to employment assistance, fertility services, and vital support for the federal Office of Cancer Survivorship.

Kylie voices for Childhood Cancer Act H.R. 10405

Mandating that state comprehensive cancer control coalitions include at least two pediatric experts. The legislation establishes a temporary HHS Pediatric Cancer Advisory Committee—uniting federal agencies like the NCI, NIH, CDC, and HRSA with survivors and advocates—to develop state-level best practices. Additionally, it amends the Social Security Act to explicitly authorize states to use Title V Maternal and Child Health Block Grant funds for pediatric-specific goals within their cancer control programs.

Take Action: Make Your Voice Heard

Pediatric cancer research needs champions in Congress—and your voice matters. Contact your U.S. Senators and Representatives and urge them to support critical legislation that give children with cancer a fighting chance.

Every call, email, and letter helps push pediatric cancer research forward. Let them know: our kids can’t wait.