The Pediatric Funding Crisis
Written By: Diya Sirimagiri
Pediatric cancer remains one of the most devastating diagnoses a child can face, yet the systems designed to support research, treatment advancement, and equitable access continue to lag behind children’s needs. Although childhood cancer survival rates have improved over the past several decades, progress has slowed, disparities have deepened, and the structural weaknesses in national funding models have become impossible to ignore. This November, Project 46 is turning its policy spotlight toward one of the most urgent but overlooked issues in youth health equity: the chronic underfunding of pediatric cancer research and the policy gaps that allow children to fall behind adults in treatment innovation.
Every year in the United States, approximately 15,000 children receive a new cancer diagnosis. But while children make up roughly 22% of the population, pediatric cancers receive a tiny fraction of federal cancer-research funding. This mismatch is not a coincidence—it’s the result of structural funding decisions that privilege adult cancers because they are more common and politically easier to justify. And yet, pediatric tumors are often biologically unique, meaning adult cancer drugs aren’t designed for children’s bodies or disease pathways. When funding is inadequate, the consequences are immediate: fewer clinical trials, fewer specialized therapeutics, and slower development of the treatments children desperately need. What’s worse? The children who get hit hardest by these funding gaps are those who already face inequities, kids in rural regions, low-income families, and communities of color. They wait longer to be diagnosed, have fewer pediatric specialty centers nearby, and have limited access to experimental therapies.
The current pediatric-cancer research landscape is shaped by laws, budgets, and institutional decision-making that repeatedly sideline kids. While Congress has passed strong supportive bills in the past, such as the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, these laws often provide limited, one-time boosts that don’t fix the underlying underinvestment. This year, the mismatch between need and funding became even clearer. The NIH announced structural changes to how it allocates research dollars, sparking fears that pediatric cancer research programs may lose critical support. Advocacy groups warned that several pediatric-focused grants may become more competitive, limiting the number of children who can benefit from clinical innovations. Budget uncertainties have delayed or reduced expected investments in high-impact pediatric research initiatives. In a moment where children should be at the center of policy decisions, they are instead left relying on fragmented grant cycles and unpredictable funding.
In early November, a bipartisan group of lawmakers introduced the Fairness to Kids with Cancer Act, which proposes something bold but commonsense: tie federal cancer funding to the percentage of children in the U.S. population. This would significantly increase the money dedicated to pediatric cancer research, accelerate clinical-trial development, and strengthen the infrastructure needed to deliver advanced care. If passed, the bill could: reduce the time it takes for pediatric drugs to move from lab to clinic, expand access to clinical trials across more geographic regions, and build better long-term survivorship programs for kids who complete treatment. For families who currently travel hours, or even states, for pediatric oncology care, this legislation offers hope for a more equitable future.
Pediatric cancer doesn’t end when treatment does. Nearly 70% of childhood cancer survivors develop late complications, ranging from endocrine issues to heart disease. A strong pediatric cancer policy must go beyond treatment and invest in lifelong survivorship care, especially for children from underserved backgrounds who often face barriers accessing specialty follow-up services. Policy delays deepen these inequalities. When funding falls short, survivorship clinics close, transition-of-care programs weaken, and rural survivors lose access to the long-term monitoring they need. Without policy reforms, pediatric cancer becomes not just a childhood crisis, but a lifelong one.
Young people have a stake in this fight. Kids fighting cancer today are our peers, classmates, neighbors, and disproportionately, our most vulnerable youth. A policy environment that fails them is a system failing the next generation. Youth advocacy has already pushed major reforms in public health, from vaping regulations to mental-health parity laws. As part of the 46 Watchlist, here are the key developments we’ll track for November: The committee progress of the Fairness to Kids with Cancer Act, including amendments and potential bipartisan sponsors. NIH and NCI funding decisions for pediatric-specific research programs as the fiscal year allocation process continues. Updates from national pediatric cancer organizations on research
priorities, clinical trial expansions, and potential funding gaps. Any proposed state-level legislation in California related to healthcare access or pediatric care infrastructure that could impact families disproportionately. Each update helps build a clearer picture of where progress is happening, and where advocacy pressure is needed.
This month, Project 46 is encouraging members to take three small but meaningful actions: Stay informed. Read our weekly Watchlist updates and learn the basics of pediatric cancer policy. Speak up. Send a message to your representatives supporting pediatric-focused legislation. Your voice carries more weight than you think. Share outward. Post one stat orinsight from this article on your personal or school platforms. Awareness multiplies when youth share it.
