Research on brain tumors in children that has been supported by the federal government will wind down in March due to cuts in funding from the National Cancer Institute, which is part of the National Institutes of Health.

The Pediatric Brain Tumor Consortium, formed in 1999, is a collaboration between 15 hospitals and the National Cancer Institute centered on clinical trials and studies that target pediatric brain cancer. Children’s Hospital Colorado has been in the consortium for the past 10 years, and the doctors who work on its studies say they are looking for options to continue trials that are affected by the federal funding cuts.

“The uncertainty with this program is deeply disappointing, as it represents a loss of scientific collaboration and shared progress across North America,” Dr. Rajeev Vibhakar, a neuro-oncologist at Children’s Hospital, said in a statement. “In removing this infrastructure, it will be more difficult to advance new therapies in children and will decrease our collective ability to find ways to improve child health and access to the newest, most promising trials and treatments.”

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An August update to the NCI website says the consortium “will not be able to apply for another 5-year funding award to continue its funding beyond March 2026.” Some trials affected could be completed “wherever feasible and appropriate” after the NCI decided to prioritize funding for research within another group of hospitals known as Pediatric Early Phase Clinical Trials Network, or PEP-CTN, over the consortium.

Children’s Hospital has trials impacted by NCI’s funding cuts, Vibhakar said, but the hospital hopes the NIH and NCI “will provide clarity on the path forward, so we can build on the momentum and preserve the gains made for pediatric brain cancer patients.”

Dr. Lia Gore, section head of the Center for Cancer and Blood Disorders at Children’s, said there has been no impact to patients yet and that “we hope that the transfer is seamless for the patients and patient families.”

“We are working to understand how quickly new trials can be opened and how to ensure that selected ongoing trials are supported,” Gore said in a statement.

This unpredictability is understandably stressful for families, especially those whose children were enrolled in trials or awaiting new opportunities.

Dr. Ira Dunkel, who spoke to Newsline as chair of the PBTC, said the consortium has heard verbally about funding cuts that will affect its work, but it has received no formal or written notification other than seeing the update on the NCI website.

The consortium will shut down March 31 or shortly after if the NCI funding cuts go through as currently planned, Dunkel said. He said he sees “a very good faith effort on everybody’s part” to transfer as many studies to PEP-CTN, but other trials will likely close prematurely because of the change. Trials that are active and accruing patients at Children’s are in the process of being transferred to PEP-CTN, Gore said.

“Although we receive additional funding from grants and foundations and philanthropy beyond the NCI funding, the consortium infrastructure really exists based upon the NCI funding, and we use NCI resources as part of our fundamental activities,” Dunkel said. “The PBTC without NCI funding will cease to exist.”

Various foundations and other potential funders have told the consortium they would offer funding to replace what is lost from the federal government, Dunkel said, but “it’s not as simple as that” because of how much of the consortium’s work uses NCI facilities, databases and other resources. He said he’s been told that even with adequate funding, the consortium will not be permitted to use those resources.

It’s possible that private funders could create “a successor organization” to the PBTC, Dunkel said, but that is still an early discussion given how recent the news of funding cuts came through.

Consortiums essential for kids

The Colorado-based Morgan Adams Foundation funds pediatric cancer research, and Children’s Hospital’s brain tumor research program is named after the foundation. It primarily funds “pipeline ideas” that go on to become clinical trials like the ones run by the PBTC, according to Joan Slaughter, founder and executive director, whose daughter the foundation is named after. The majority of its funding goes to research in Colorado, but Slaughter said the foundation has relationships with most research institutions in the country.

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The cuts to the consortium will affect the future of studies and other work the Morgan Adams Foundation has already provided funding for, Kat Russell, the foundation’s director of strategic marketing, said, as that research may have been further developed through trials overseen by PBTC hospitals. Slaughter said clinical trials are “the only way to really impact the patient population.”

“So if the budget cuts start to reduce the number of trials that can happen in peds, you are really prolonging how long it takes to get new treatments out to our kids, and disrupting that cycle is going to have longer term, very negative effects,” Slaughter said.

The collaboration that multi-institution consortiums like the PBTC offer is essential for successful pediatric cancer research, Robin French, program officer at the Morgan Adams Foundation said, because fewer children get cancer than adults and pooling resources is more desirable for drug companies.

“These types of consortia are critical to making the trials happen, because that’s the only way you’re going to get enough children to get this full significant group there, a cohort of kids to test the effectiveness of these treatments,” French said.

The PBTC includes hospitals in states across the country, as well as Washington, D.C., and one in Canada.

No new patients

Dr. Holly Lindsay, another neuro-oncologist at Children’s, said the hospital is looking for opportunities to continue the care it is already providing to patients under the consortium.

“This unpredictability is understandably stressful for families, especially those whose children were enrolled in trials or awaiting new opportunities,” Lindsay said in a statement. “Cancer is the leading cause of medical death in children, and the risk of losing impactful clinical trials is real.”

Patients currently receiving treatment under a PBTC trial can continue that treatment, but Dunkel said it has suspended accepting new patients into any studies. He said the consortium is “extremely concerned” about the patients currently receiving treatment under trials.

Patient advocates and families are “outraged,” Slaughter said, because “our job is to protect our children,” and reducing resources available to help them is “not caring for our kids.” “It’s challenging when cancer is politically agnostic and the families that it attacks … you want to step away from that conversation and just really talk about, ‘We should be investing in the future of our kids.’ That’s really what needs to be happening — regardless of who sits in what chair, we need to be taking care of our kids.”

French’s son is a childhood cancer survivor, and she said doctors used experimental treatments for him when he was sick.

“If someone had told me at that point that I would no longer have access to the care that we were in the middle of, I mean, I don’t know what I would have done. I would have lost it, I think, as any parent would,” French said. “My heart breaks for these people, that someone’s saying ‘I’m sorry, but we have to take you off this trial, because we don’t have the money to do it anymore.’”