Federal funding cuts to pediatric brain cancer research ‘taking away hope’ from families
Ali Rogin and Kaisha Young | 9.20.25
Brain tumors are the leading cause of pediatric cancer-related death. In August, the Trump administration announced it would stop supporting a federally funded network dedicated to researching these deadly cancers. Misha Mehta, president of the Neev Kolte & Brave Ronil Foundation, and Dr. Paul Graham Fisher join Ali Rogin to discuss the implications of the loss of funding.
Ali Rogin:
Each year, close to 5,000 children are diagnosed with brain tumors, which are the leading cause of pediatric cancer related death. Last month, the Trump administration announced it would stop supporting a federally funded network dedicated to researching these deadly cancers.
Starting in March 2026, the Pediatric Brain Tumor Consortium will no longer receive funds from the National Cancer Institute, which is the federal government's principal agency for cancer research.
To discuss the implications of this, I'm joined by Misha Mehta. She is the president of the Neev Kolte and Brave Ronil Foundation, which she founded in honor of her late son who was diagnosed with a rare brain tum in 2020. And Dr. Paul Graham Fisher, a professor of neurology and pediatrics at Stanford University and co-investigator in the PBTC. Thank you both so much for joining us.
First to you, Paul, what makes pediatric brain tumors unique and challenging? And why are these clinical networks important?
Dr. Paul Graham Fisher, Stanford University:
They're challenging in that these are tumors, not only in little kids, that are tumors of childhood, but the brain is obviously a very tricky part where sometimes surgery is very challenging. And then the effects of therapies, radiation, drugs, other therapies, they have profound implications on who the child is. So that's one aspect.
The other aspect you highlighted that brain tumors in children are really the hardest or most difficult to cure in childhood. And we just don't have effective therapies. That's why having investigational groups, a consortium, is just so darn.
Ali Rogin:
And Paul, there's a lot that we don't know about the future of this research. But one thing we do know is that the network has paused enrollment in its ongoing clinical trials. What does that mean for families who are waiting to get their kids into these trials?
Paul Graham Fisher:
It means a lot of things for families. One is all new entries are on hold or suspended, so no new entries could be made on these trials. There's a little bit of uncertainty about how these trials will be handled, whether they'll be transitioned to children's oncology group, in part.
Ali Rogin:
And that is another body that is run by the National Cancer Institute, is that right?
Paul Graham Fisher:
That's true. Correct. The Children's Oncology group is also under the NCI, the National Cancer Institute, but it will also likely face some sort of budgetary cuts, too. It's not going to be exactly a one for one. This is going to be very hard to families because there are families not only who want to get their children on these trials, but there'll be certain trials that now just are not available. They'll have to seek other sources, other sites, other ways to try to find novel treatments for very hard and refractory cancers.
Ali Rogin:
Misha Mehta, you represent some of those families who are going through this with a child. Your pin has your beautiful son Neev, who was diagnosed and passed away due to a pediatric brain tumor.
As a parent who's gone through this, what does it mean to have access to trials like this?
Dr. Misha Mehta, Neev Kolte and Brave Ronil Foundation: Yeah. Thank you for my son. Neev participated in four phase one clinical trials. Right. Similar to what the consortium puts out for families like us, for kids like Neev, they translate into hope. Right. Then there is the standard of care is radiation and a phase one clinical trial.
And if you're taking away hope, what are you going to do? You have no path forward. This is hope for us. That's the only way we get to save a chance to save our kids.
Ali Rogin:
You have been in touch with leaders at the National Cancer Institute about the future of the research that's being done. What is your understanding and what have they told you about why they're doing this now?
Misha Mehta:
So the understanding is that the consortiums is run out of 16 different hospitals. When rolling under the larger Children's Oncology group, it will have access to about 40 more different institutes that are part of that larger phase clinical trials. I think that idea sounds good, but the point is that there is no clear path forward as to what happens to kids right now who are looking for treatment, or I say looking for hope when they're diagnosed or battling these deadly brain cancers.
Ali Rogin:
Paul, I want to put to you the position that we're hearing from the federal government on this is that moving this work into a larger body will be a more efficient use of resources. How do you see it?
Paul Graham Fisher:
There may be some areas where there's efficiency, but there's innately in treating cancers that are very refractory. With the earliest treatments, phase one treatments, there's going to be a lot of drugs that sometimes or treatments that are not successful.
I think the other thing to point out is the children's oncology group is a Wonderful Group. These 16 Centers of Excellence see somewhere on the order of about a third to up to half of all children with brain tumors and in the United States. So these are centers that are extremely specialized, that bring a lot more to the consortium in terms of their science and their other early initiatives in terms of translating science into treatments.
Ali Rogin:
And Misha, this conversation is broader than this one consortium. There are many changes happening in the field of pediatric brain tumor research, pediatric oncology more broadly. Tell me about what's happening and how it's affecting your community.
Misha Mehta:
As a parent advocate right now, I am fighting for other kids that come after my son Neev, and we've seen this time and time again that they've been sustained funding that has been removed from pediatric cancer in general in research. Right. Parents that came before me advocated for the last 10 years to get the funding from NIH from 4 percent to 8 percent. That's where were.
But repeated cuts that we are seeing that is leading to decrease the funding. Like Dr. Fisher said, this is a hard disease to study. It is hard for people to be convinced enough to come and study this disease, but the rewards are very little. But the need is extraordinary.
So if you remove the funding around it, you're going to lose the talent or train the next round of scientists and doctors like Dr. Fisher into this field. Right. So it's like, for me, it's a systematic issue where we are losing piece by piece in an already a community that has seen so little amount of infrastructure that is coming into from federal funding.
Ali Rogin:
Misha Mehta, Dr. Paul Fisher, thank you both so much for your time.
Misha Mehta:
Thank you.
Paul Graham Fisher:
Thank you very much.
