Kylie's Voices for Childhood Cancer Act

Kylie’s Voices for Childhood Cancer Act would put pediatric cancer expertise back into the process that decides how states fight cancer, ensuring that children are represented in the plans built to protect them.

The bill was introduced by Representative Josh Gottheimer, who was moved to lead this legislation through his close, personal relationship with Kylie’s family. Having watched their fight firsthand, Rep. Gottheimer built this bill to make sure no other family has to fight to be heard the way Kylie’s did.

• Guarantee pediatric representation on state cancer coalitions. States receiving federal funding for their comprehensive cancer control plans would be required to include at least two pediatric cancer experts on their state coalition, giving childhood cancer a permanent seat at the table.
• Establish a national Cancer Control Plan Pediatric Cancer Advisory Committee. Housed at HHS, this committee would bring together representatives from the National Cancer Institute, NIH, CDC, state health programs, pediatric cancer organizations, and, critically, survivors and caregivers themselves.
• Turn expertise into action. The advisory committee would develop best practices and concrete recommendations for addressing pediatric cancer within state plans, including guidance on how states can put funding to work for kids and for adolescent and young adult (AYA) patients.
• Keep states connected to real outcomes. The committee would meet annually with state coalitions to share what’s actually working: real case studies of pediatric cancer care done right.
• Hold the system accountable. Within two years of its first meeting, the committee must deliver a public report to Congress on its findings and recommendations, so families and advocates can track whether states are following through.
• Open Title V funding to pediatric cancer needs. The bill amends the Social Security Act’s Maternal and Child Health Block Grant program so states can use those funds to meet pediatric-specific goals within their comprehensive cancer control programs.

This bill doesn’t create a new bureaucracy for its own sake; it fixes a structural gap. Right now, the plans that determine how states approach cancer are missing the one perspective that can speak to what kids with cancer need. Kylie’s Voices for Childhood Cancer Act ensures that pediatric cancer experts, survivors, and caregivers aren’t an afterthought in that process: they’re required participants.