For children battling the deadliest forms of brain cancer, clinical trials often represent the final, fragile hope for survival. Now, that hope is being systematically dismantled by the Trump administration's sweeping cuts to federal research funding, leaving families across the United States in a desperate scramble for treatment that may no longer exist.
A Nurse's Worst Nightmare Comes Home
Jenn Janosko spent seven years caring for critically ill children on the paediatric oncology floor of New York's Memorial Sloan Kettering hospital. She knew the unit's unique soundtrack – the beeping of machines, the laughter on good days, the harrowing silence when a child was dying. Last August, she returned, but this time holding the hand of her own four-year-old daughter, Izzy.
Izzy was diagnosed with diffuse intrinsic pontine glioma (DIPG), an incurable brainstem tumour with a median survival of just 11 months. As a nurse, Janosko knew the brutal prognosis intimately: "Eventually they can’t move, they can’t talk or smile or eat, they can’t see or hear, but their minds are fully intact. That’s the urgency." Her only hope was to secure a place on an experimental clinical trial.
The Systematic Dismantling of a Research Ecosystem
This desperate search collided with a new political reality. The Trump administration, despite the President's vow to "end childhood cancer," has launched a profound assault on the agencies that fund the search for a cure. Guided by the blueprint of the Heritage Foundation's Project 2025, the administration appointed its architect, Russell Vought, to spearhead a "dramatic overhaul" of the National Institutes of Health (NIH).
The consequences have been swift and devastating. The administration imposed a funding freeze, cancelled hundreds of medical grants, and shifted goalposts, now approving only the top 4% of peer-reviewed grant applications, down from 9%. Most critically, it announced the withdrawal of all support from the Pediatric Brain Tumor Consortium (PBTC), a 25-year-old network of 16 leading North American children's hospitals. Its funding ends in March 2025.
"This goes against evolution. It’s like watching a countercurrent flowing against the evolutionary maturity of cancer therapy," said Dr. Mark Souweidane, a neurosurgeon at Memorial Sloan Kettering. His groundbreaking trial, which involved delivering drugs directly into tumours via catheters and had shown promising early results, was weeks from a nationwide launch through the PBTC. It has now been called off.
Families Face Closed Doors and Crushed Hope
For families, this translates into a series of heartbreaking closed doors. Janosko contacted ten leading medical centres pursuing promising treatments like CAR T-cell therapy, a technique she had seen succeed in leukaemia. One trial in Texas was suspended due to the consortium's closure. At Seattle Children's Hospital, over 50 children were on a waiting list. "I don’t consider it optional to offer research to these kids," said Professor Sarah Leary, holding back tears.
The story is echoed in Houston, Texas, where Nikki Owens cares for her nine-year-old daughter, Kinlee, also diagnosed with DIPG. Owens, who voted for Trump, now feels betrayed. "He buttered me up... then he turned around and betrayed me," she said, furious that her daughter qualified for two trials that are now closed to new patients. "It’s like a slap in the face after being punched in the gut."
The funding crisis has a chilling ripple effect. Startups like Flag Therapeutics, which developed a promising novel drug called Flag 3, saw their financial lifeline – a congressional voucher scheme – scuppered after tech billionaire Elon Musk used his platform to help sink a bipartisan spending bill. "It's like having to jump out of a plane without a parachute," said CEO Frank Sorgi.
Scientists Contort Language, Research Grinds to a Halt
In laboratories, the impact is equally severe. Dr. Eugene Hwang, a paediatric neuro-oncologist, is developing an mRNA vaccine for DIPG, with peer reviewers placing his proposal in the top 7% of applications. The new 4% cutoff has set his work back indefinitely. He now stares at a montage of 40 former patients on his office door, a constant reminder of the urgency.
Strangely, researchers are now being advised to avoid the term "mRNA" in federal applications due to Health Secretary Robert F. Kennedy Jr.'s hostility to childhood vaccines, fearing blacklisting. Labs face hiring freezes, delaying the critical analysis of why trials work for some children but not others.
When asked for comment, the Department of Health and Human Services stated the NIH continues to invest significantly in cancer research, with the National Cancer Institute's budget exceeding $7 billion. NCI Director Dr. Anthony Letai called the PBTC decision a "pivot" for "good logistical reasons," promising trials would move to a new system "as soon as is feasible." For parents counting their child's remaining months in single digits, that timeline is a death sentence.
A Flicker of Hope Amid the Darkness
Despite the bleak landscape, a relentless community of doctors, advocates, and bereaved parents refuses to surrender. Mike Henry, who lost his daughter Blair to a brain tumour and now works for the Pediatric Brain Tumor Foundation, represents this resilience. "Giving in is not in our vocabulary," he said.
For Jenn Janosko, a sliver of light finally broke through. Weeks after our interview, she received news that Stanford Medicine had offered Izzy a place on its CAR T-cell trial. "I’m petrified and I’m ecstatic," she said. The treatment carries no guarantees, but for some, like a patient named Drew, it has worked completely. Izzy's treatment began shortly after.
Her story underscores a painful truth: while science and compassion push forward, the current political climate is actively creating a countercurrent, leaving America's sickest children and their families to bear the devastating cost.
