The End of the Pediatric Brain Tumor Consortium: Episode Transcript

https://www.youtube.com/watch?v=gsSmlGhcchU

Dr. Paul Graham Fisher

In the end it's a decision about do we want government funding to be less involved in advancing or trying to cure cancer?

Annika Horne

Last August, I was sitting in a library refreshing email when I saw a New York Times headline “Pediatric Brain Cancer Group to Lose Federal Funding.”

The Trump administration had just announced that it would end the Pediatric Brain Tumor Consortium. A few months earlier, my sister Riley died from brain cancer at 29 years old. For tumors like the glioblastoma that my sister had or DIPG in children, expected survival is about a year often less. Ending the PBTC has already meant that children with brain cancer have been denied entry to trials.

Reading about this, I kept thinking about what happened to my sister. We had hoped that she would join a trial at Duke University,

It seemed to be a promising area of research, and it was certainly better than the standard of care, which we already knew wouldn't work. So she went to Duke in January to do some diagnostic tests: an MRI and a needle biopsy.

The results were devastating. Her cancer had spread too much and so it was no longer operable. She was taken off of the trial.

I don't know exactly what the doctor said, but they probably recommended palliative care. I remember standing in my kitchen in Brooklyn on the phone with my mom, staring at the snow in my neighbor's backyard, completely lost for words.

The months that followed were the hardest of my life, and frankly, I hope that they stay that way. Now, children with brain cancer are being put in that same position, but not because of their illness, but because someone, somewhere thought that they had a great idea to save the government some money.

I wanted to learn more about this issue, so I spoke with Ed Pilkington of The Guardian, who's been covering families affected by this, and Doctor Paul Graham Fisher, a pediatric neuro oncologist at Stanford, a PBTC member.

Ed Pilkington

I'm Ed Pilkington, I'm the chief reporter of the Guardian, I have the skin in this game because my wife, Jessica, she died of GBM glioblastoma, which is the most deadly adult form of brain tumor. When I started hearing that the new Trump administration from last year was starting to eat into cancer research, I made a note to myself that I would keep a special eye out for any cuts that were happening to adult GBM research and treatment. But what I was struck by was how it was the kids who were getting it worst.

Dr. Paul Graham Fisher

In March of 2026, the Pediatric Brain Tumor Consortium will no longer exist. Some of those trials some of those trials might get picked up some won’t. So some kids may have to find something new. But the reality is right now, one, we're not enrolling any patients on these trials. That's upsetting. Two, everyone is certain is that not all these trials will move forward.

I think on a personal level, I think if I were a parent, I'd probably say it's a disaster, because if [a trial] is cut off midstream, and if hypothetically, it were working for your child, I can't imagine how heart wrenching it would be to say, “Well, the trial's over, so you'll just have to find something else.”

Ed Pilkington

It is the only hope you have. There's nothing else. That is your hope to keep your child alive. So if you're told that there was a place on this clinical trial, but now it's no longer there because of changes coming out of Washington, your only hope to save your child has just been taken from you.

Dr. Paul Graham Fisher

It just it just rips your heart out.

Ed Pilkington

I was keen to reflect on what the doctors are going through too. They shared with me their stories of what it's like to work with kids who are basically...they’re dying on your watch all the time because the pace of this illness is so brutal. So one doctor, Eugene Wang in, in DC, he showed me the door of his office, and it has something like 40 pictures of kids attached to the back of his door. And that's what he sees when he looks up from his desk every morning. And they're all kids who he treated and who died. And he said, “that's my inspiration. That's what keeps me going.”

Trump himself has made the statement that he wants to, find a cure to childhood brain cancer and childhood cancer generally. And yet the actions on the ground of appear to have been quite the opposite.

They've set back a number of really critical trials. I've spoken to other people who have told me this --- that mRNA vaccine trials in particular are falling afoul of the Health Secretary Robert F Kennedy, Jr's anti-vaccination skepticism.

MRNA vaccine treatment is one of the most exciting areas with childhood brain tumors The neuro oncologist I spoke to at George Washington University in Washington, DC, he has a major clinical trial ready to go on the mRNA vaccine and it was poised to get NIH funding. And then suddenly the guillotine dropped on that.

It's got to the stage where other scientists told me privately that they were having to change the way they put their grant applications in so as not to use the phrase mRNA. And they were telling me, that's kind of difficult, because mRNA is literally in every single cell in the body.

Dr. Paul Graham Fisher

We know particularly in diseases like childhood cancer, the success we've seen over the last four decades would never, ever have happened without government funding.

Ed Pilkington

Trump talks a lot about making America great again. Well, one area of greatness that is indisputable is that America leads the world in biomedical research and the fight against cancer. So why are they going at it and disrupting it? I don't actually understand. People are very anxious about next year's budget and how much will come through. Some of the most dystopian threats, to remove 40% of NIH’s budget, appear to have gone away.

Dr. Paul Graham Fisher

you don't hear many companies saying, hey, our next number one goal is developing a drug for kids with brain cancer. If you develop a drug for weight loss, there's a large market, there'll be a lot of people that want to buy it. Well brain tumors...you only have about 4000 per year, and the return on the investment, given that market size, I hate to use that word, but it’s reality...It might not be a very good market size with a lot of liability.

My lose sleep at night is what's research going to look like in ten, 20 years when there's been a generation of people who said, you know, "I really do care about that, but I had to go at it in some other way because I knew going to becoming a researcher, whether it's oncology or other things, I knew that it's just not it's not going to work out for me."

Ed Pilkington

Everyone will be touched by cancer during their lifetimes. Not if not personally by someone they love you don't get your head around it until it happens to you.