Funding turmoil in cancer research leaves affected families in a state of disarray and uncertainty
In a concerning development, the National Cancer Institute (NCI) has announced it will no longer fund the Pediatric Brain Tumor Consortium (PBTC) after 25 years, a decision that has caused widespread concern among pediatric oncologists, scientists, and pediatric cancer advocates. This decision, which takes effect when the current funding expires in March 2026, has left a vacuum at the NIH hospital where adults and children with cancer are treated at no cost.
One family particularly affected by this decision is the Leskos, who have been battling an incurable form of brain cancer, ependymoma, with their five-year-old daughter, Juliette, for two years. The Leskos had been hoping to sign up for a clinical trial in Texas for a different approach to treating Juliette's brain cancer, but six PBTC clinical trials, including the Texas-based trial, have stopped enrolling new patients. Two additional trials have been delayed in starting.
Juliette has undergone two brain surgeries, 30 sessions of radiation, and two relapses. Currently, she is being treated with an experimental drug, but it is unclear whether it is working. A brain scan scheduled for later this month will determine if the tumor has grown, indicating the treatment is not working.
The decision to defund PBTC is not the only issue concerning the cancer research community. The administration is clamping down on grants going to international researchers who are working in partnership with US scientists, which is particularly concerning for rare diseases like DIPG where patient numbers are usually small. Additionally, the suspension of research grants that contain diversity, equity, and inclusion components, including some pediatric cancer grants, has raised further concerns.
A July letter to NCI signed by over 1,000 families and advocates for DIPG research decried the decision not to fund the treatment. The National Brain Tumor Society plans to submit a petition to NCI this month asking that the decision to shut down the PBTC be reconsidered.
However, there is some promising news on the research front. The experimental drug Hwang's treatment is being tested on has shown effectiveness in shrinking a particularly aggressive and always fatal brain cancer called diffuse intrinsic pontine glioma (DIPG) in mice. If the treatment proves effective in human trials, it could offer hope to families like the Leskos who are battling these devastating brain cancers.
Despite the challenges, the fight against pediatric brain cancer continues, with advocates and researchers working tirelessly to find new treatments and cures. The Leskos, like many other families, remain hopeful that one day, their children will be cancer-free.
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