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Childhood‑cancer advocates warn PBTC defunding threatens trials and patient access
Summary
Witnesses and family advocates told the House Oversight Committee that ending or consolidating the Pediatric Brain Tumor Consortium (PBTC) and cutting research funding undermines specialized trials, risks data continuity and deprives families of hope for life‑extending treatments.
Jonathan Agan, co‑founder of Prep for Gold and a childhood‑cancer advocate whose daughter died of a pediatric brain tumor, told lawmakers that ending the Pediatric Brain Tumor Consortium (PBTC) has immediate consequences for trial participants and long‑term consequences for research. "Parents who had a child on a trial were immediately sent into panic, fearing that they would lose access to study drugs," Agan said.
Agan and other witnesses described PBTC as a specialized, 25‑year network focused on pediatric brain tumors that gave children access to trials tailored to the biology of their disease. Witnesses said the consortium was rolled into a broader network (PEP CTN through NCI) that they said lacks PBTC’s disease‑specific focus and risks losing specialized protocols, site expertise and granular data tracking.
Advocates also cited programmatic and budgetary changes: witnesses referenced cancellation of roughly $500,000,000 in public mRNA research investment in August 2025 and warned that proposed NIH and HHS budget reductions threaten future clinical research. "The cancellation of the PBTC ... makes no sense because of the specialized issues that kids with brain cancer face," one witness said.
Members pressed for restoring targeted funding and specialized consortia to preserve trials and data integrity. Witnesses urged Congress to prioritize childhood‑cancer research funding and to ensure transitions preserve patient access to study drugs and data continuity.
