MONTVALE, NJ — During Childhood Cancer Awareness Month, Rep. Josh Gottheimer announced new bipartisan legislation in Montvale aimed at giving pediatric cancer advocates a formal role in the way states write cancer control plans. The proposal, called the Kylie’s Voices for Childhood Cancer Act, or Kylie’s Law, is named for Kylie Kupperman, a New Jersey native and close family friend who died of cancer at age 19.
Gottheimer unveiled the measure at Memorial Sloan Kettering Bergen alongside Rep. Mike Lawler, a New York Republican. The legislation would require states that receive federal funding for cancer control planning to include at least two pediatric cancer experts on their coalitions. It also would create a national advisory committee and expand a federal health grant program so states can direct more attention to children with cancer and their families.
A bill built around a childhood cancer gap in state planning
Gottheimer said the measure is meant to fix a structural problem: state cancer plans are often shaped by adult cancer priorities, even though childhood cancer has different treatment and survivorship needs. Every state has a Comprehensive Cancer Control Coalition that helps set long-term cancer policy, but only about a third of states include specific childhood cancer goals in those plans.
Under the bill, states that want federal support for their comprehensive cancer control plans would need at least two pediatric cancer experts on the coalitions that write them. The goal is to make sure children’s needs are not left out when states decide how to spend attention and resources. Gottheimer argued that pediatric patients deserve plans tailored to their age, their diagnoses, and the long-term effects of treatment on growing bodies.
Kylie Kupperman’s life and the medical fight that shaped the proposal
Kylie Kupperman was born in Englewood and grew up in Chappaqua, New York. Just before her fourth birthday, she was diagnosed with medulloblastoma, a fast-growing pediatric brain tumor. She went through surgery, chemotherapy, and radiation, later being declared cancer-free before her illness returned as she started college at the University of Delaware.
Gottheimer described Kupperman as a determined student who loved dance, fashion, and the color pink. He said her family and friends supported her through treatment and that she died peacefully in her sleep on Sept. 10, 2025, at age 19. The congressman said the legislation is intended to honor her life while helping other families avoid the same heartbreak.
The bill announcement came with family members and friends of Kupperman in attendance, including her parents, Adam and Haley Kupperman. Gottheimer said naming the measure after her gives the effort a personal reminder of what is at stake for children and families facing pediatric cancer.
What Kylie’s Law would change at the federal level
The legislation has three main pieces. First, it would require pediatric cancer representation on state cancer coalitions that receive federal funding. Second, it directs the Department of Health and Human Services to create a new Cancer Control Plan Pediatric Cancer Advisory Committee. That committee would include voices from the National Cancer Institute, the National Institutes of Health, the CDC’s National Comprehensive Cancer Control Program, Title V and HRSA-funded state programs, survivors, and caregivers.
The advisory group would be charged with developing best practices for pediatric cancer, survivorship, and adolescent and young adult care in state cancer plans. Third, the bill would amend the Maternal and Child Health Services Block Grant Program to explicitly include pediatric cancer, allowing states to use existing federal dollars to support children with cancer and their families.
Support from doctors, advocates, and Lawler
Lawler said families dealing with childhood cancer should not have to wonder whether they can afford care or find the right treatment. He said the bill is designed to support lifesaving research and care so children have a better chance to grow up healthy and pursue their goals.
Several advocates also backed the proposal. Jeff Gelfand, chief executive of the Pediatric Brain Tumor Foundation, said families deserve a seat at the table. Dean Crowe of the Rally Foundation for Childhood Cancer Research said childhood cancer brings unique challenges and that advocates need to be heard nationwide. Ginny McLean, board chair of the Coalition Against Childhood Cancer, said the bill gives patients, families, clinicians, and researchers more power to correct longstanding gaps in planning.
Gottheimer was joined at the event by Sen. Holly Schepisi, Memorial Sloan Kettering Chair of Pediatrics Dr. Andrew Kung, pediatric oncologist Dr. Ira Dunkel, Donna Chiapperino, the district director for Lawler, and representatives from the Pediatric Brain Tumor Foundation and the Christopher Brandle Joy of Life Foundation.
New Jersey action, a November resolution, and Gottheimer’s broader record
Gottheimer said he is also working with New Jersey lawmakers including Sen. Joe Lagana, Assemblywoman Lisa Swain, and Assemblyman Chris Tully on state legislation to require pediatric cancer representatives on New Jersey’s cancer control coalition. He said that step would help ensure future administrations cannot remove the requirement.
He also plans to introduce a House resolution on Nov. 13, 2026, what would have been Kupperman’s 21st birthday, to recognize the date as Kylie’s Day. The resolution would formally honor her life, her struggle, and her legacy. Gottheimer said the effort fits into a broader push on childhood cancer that includes prior work on federal research funding, pediatric drug studies, survivorship care, and guidance for adolescent and young adult patients.
He pointed to previous measures including the Childhood Cancer STAR Act, the Mikaela Naylon Give Kids a Chance Act, and his current sponsorship of the Lainie Jones Comprehensive Cancer Survivorship Act. He also said a request for better CDC guidance on adolescent and young adult cancer patients was included in a House appropriations bill approved by committee this summer.
