Local patients to see effects ‘starting now’ in federal cuts to pediatric brain cancer care
AI-generated summary reviewed by our newsroom.
- Federal cuts to PBTC reduce immediate trial options for pediatric brain tumors.
- NCI shifts trial oversight to PEP-CTN, ending PBTC funding by March 2026.
- Specialists warn the reorganization limits progress in focused, life-saving trials.
For one Tacoma doctor, the recent news of federal funding cuts and changes to pediatric brain cancer research felt like “the epitome of getting kicked when you’re down.”
“We already have so few options for these kids, so few, and now we have less,” said Dr. Jacob Henderson, pediatric neuro-oncologist at MultiCare’s Mary Bridge Children’s Hospital.
Henderson spoke in a recent interview with The News Tribune following news of changes announced last month on the National Cancer Institute’s Pediatric Early Phase Clinical Trials Networks web page.
That page, updated Aug. 21, said that the program in place for phase 1 and 2 clinical evaluations of treatments for primary central nervous system (CNS) tumors, run by the Pediatric Brain Tumor Consortium, would be moved into the Pediatric Early Phase Clinical Trials Network (PEP-CTN) infrastructure.
The brain tumor consortium is composed of different academic centers and children’s hospitals across the United States and Canada “which are competitively selected based on their scientific excellence and clinical expertise in pediatric brain tumors,” according to the website.
For those in trials, uncertainty looms.
Because of the reorganization, “the PBTC will not be able to apply for another 5-year funding award to continue its funding beyond March 2026,” the website stated.
“However, NCI is committed to ensuring that ongoing PBTC trials are completed wherever feasible and appropriate, either through direct close-out support to the PBTC after its current funding ends or by transferring studies” to the network for completion.
A concern among medical specialists in this field is that the larger network doesn’t have the same focus and with the change comes a loss of expertise.
Dr. Douglas Hawkins is a pediatric oncologist at Seattle Children’s Hospital and chair of the Children’s Oncology Group. He told The New York Times in an article published Aug. 28 that “The risk is in the end we don’t do as many impactful clinical trials for pediatric brain tumors.”
Back at Mary Bridge, Henderson said while the numbers of those affected aren’t huge (less than 10 patients currently in active trials along with dozens benefiting from previous PBTC research) “There are kids that are going to have fewer options for lifesaving treatments ... starting now.”
A Centers for Disease Control and Prevention report published in 2016 noted that brain cancer had surpassed leukemia in claiming the lives of patients under the age of 20 by 2014. The report also noted that “Major therapeutic advances in treating some forms of cancer, particularly leukemia, may have resulted in increased survivorship.”
Henderson noted the struggle for breakthrough progress and advances.
“Ostensibly, (the move is) about sort of efficiency and wanting ... one larger program to be able to do both the early and the late phase clinical trials,” Henderson said. “I haven’t seen any evidence or data that the PBTC was in any way inefficient at doing its job, that it was in any way not accomplishing its goals.
“It’s one of the leanest, most efficient research groups that’s out there,” he added.
The News Tribune on Thursday has reached out via the National Institute of Health’s media contact page for answers regarding what patients currently in or seeking to be in pediatric medical trials can expect moving forward, and when the new process for trials in the federal network would begin. No response was received as of Friday.
Lost trials
The PBTC was created in 1999 by the National Cancer Institute and currently has six active trials. Potential enrollees are now in a bind amid the current uncertainty as children’s hospitals and cancer centers nationwide halt enrollment in the consortium’s trials.
One trial Henderson knows well is CAR-T therapy, an immunotherapy.
“We take the patient’s own immune cells, and we genetically engineer them to recognize and eliminate the cancer cells,” Henderson explained. “We do that in the setting of relapsed disease,” with specific trials for brain tumors.
“Those trials are no longer available,” he said.
Another one involves ONC201 oral medication, “specifically for a type of a brain tumor that is not survivable,” he said. “ONC201 has been the most successful thing that I’ve seen in my 20-year career of prolonging life. There are kids now that are living 3, 4, 5, 6 years on ONC201. I’ve had several patients on that, and now they’re using ONC201 in combination with other things to hopefully have the first ever cure of some of these cancers.
“Those trials are gone now,” he added.
“Certain centers around the country specialize in certain treatments,” Henderson said. “I would send, for instance, my relapsed ependymoma patients to Texas or to St. Jude.”
Those are cases where a primary brain or spinal cord tumor has regrown after initial treatment.
Now, “Those resources are no longer going to be available,” he said. “That’s essentially effective immediately.”
“We can’t put this toothpaste back into the tube,” he added. “We’ve lost these opportunities, and it’s an ongoing loss,” going beyond patients enrolled or seeking to enroll now.
“Unfortunately, bad news for them, in the next month, I might have five more that I can’t offer that treatment to.”
