Create Change Across the Country
Congress needs to hear why children with brain cancer are critical to the country's future. Join our efforts alongside childhood cancer advocates and policymakers to advance legislation that will help families.
The Story Behind the Bill
Kylie's Voices for Childhood Cancer Act
About Kylie
When Kylie Kupperman was nearly four years old, her parents took her to the pediatrician one morning complaining of headaches and experiencing clutziness. By the end of the day, “Smiley Kylie,” as she was known to those who loved her, was scheduled for brain surgery to remove a malignant tumor at the base of her brain. It was shocking, frightening—and life-altering. One day they were a healthy, happy family of four, and the next day they were battling this life-threatening illness.
After months of radiation and chemotherapy, Kylie was declared cancer-free, but that was just the start of the family’s journey. The side effects from radiating her brain and spine caused delays in both Kylie’s physical and mental development. Despite daily hormone injections, she was more petite than all her peers, and struggled academically, but Kylie never complained, always maintaining a positive, inspiring ‘can-do’ attitude, and worked hard in her academic classes, ballet performances, and being a big sister to her siblings. She graduated from high school and was accepted to her first-choice college out-of-state to study fashion design – and even received a merit scholarship!
Then, despite an infinitesimal chance of reoccurence, Kylie’s cancer came back, probably as a side effect of
the radiation, and spread to parts of her brain that were inoperable. Kylie didn’t let that stop her. She started her freshman year of college, underwent another brain surgery, more chemotherapy and radiation, until finally her body succumbed to the advancing debilitation caused by her tumor. She couldn’t eat or walk, and struggled to speak so others could understand her. Just a couple months shy of her 20th birthday, Kylie died in her sleep next to her mother who had brought her into this world.
Amidst their grief and devastation, the Kupperman family hopes Kylie’s story can inspire action to fund research for better treatments, and maybe even cures, to protect future families from enduring what they did.
The Problem
Kids Are Being Left Out of the Plans Meant to Help Them
Every state develops a comprehensive cancer control plan, a roadmap that shapes how cancer prevention, treatment, and support dollars get spent for years at a time. These plans are built by coalitions of doctors, advocates, and public health experts who set the priorities.
Pediatric cancer experts are rarely at that table.
Childhood cancer is different from adult cancer. It requires different research, different treatment protocols, and different survivorship care. But when state cancer control coalitions are made up almost entirely of adult-oncology voices, those differences go unaddressed.
The result is predictable:
- No pediatric-specific goals. State plans set concrete targets for adult cancers but treat childhood cancer as an afterthought, if it’s mentioned at all.
- No one to raise pediatric issues. Without a seat at the table, there’s no one in the room to flag when a policy, funding stream, or priority overlooks kids.
- Missed funding opportunities. Federal dollars that could support pediatric-specific initiatives go toward plans that were never built with children in mind.
Without pediatric cancer voices in the room, pediatric cancer issues don’t make it onto the page.
About the Kylie's Voices for Childhood Cancer Act
The Purpose
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.
What the Bill Would Do
- 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.
Why It Matters
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.
Join us in asking Congress to cosponsor Kylie’s Voices for Childhood Cancer Act.
Ask your member to cosponsor the bill below.
More Ways to Make Your Voice Heard
Join Advocates in Your State
State cancer plans serve as a blueprint for how cancer research and resources are funded in each state, yet very few address the needs of pediatric patients. Join your state's cancer plan workgroup to help families in your own community.
