09/25/2025
https://www.facebook.com/share/p/1F8RcnGitM/?mibextid=wwXIfr
It's Childhood Cancer Awareness Month and the Trump administration has announced it's terminating a 26-year-old federally-funded research collaboration working to treat children's brain tumors, the deadliest form of childhood cancer. The Pediatric Brain Tumor Consortium (PBTC) was recently notified it would lose its funding for a mere cost savings of $4 million annually, an amount so infinitesimally small it constitutes roughly 0.00006% of the federal government's $6.8 trillion budget in fiscal year 2024.
This represents a devastating blow to childhood cancer research. Before the PBTC was established in 1999, there had been no systematic and collaborative way to efficiently evaluate the promise of potential new treatments for children with brain tumors. The unique consortium brought together physicians, scientists, neurosurgeons, and oncologists from 16 different institutions who, as Dr. Mark Souweidane, director of pediatric neurosurgery at Memorial Sloan Kettering Cancer Center, explains, generated "the intangible... cross-fertilization, the collaboration, the idea making that happens in these groups."
Yet despite this irreplaceable scientific collaboration, the administration claims shutting down the PBTC is about "streamlining" and "optimizing resources for maximum impact." The reality is stark: the consortium learned through an August 19 memo titled "Difficult news regarding PBTC funding" that its grant would expire next March, after which it would "cease to exist", immediately forcing hospitals to stop enrolling children in the six life-saving trials currently running.
The termination of the PBTC is part of a broader assault on medical research. In just the first three months of 2025, the Trump administration cut $2.7 billion in National Institutes of Health funding, with federal funding for cancer research slashed by 31%. At the National Cancer Institute, the odds of a scientist's grant proposal succeeding have plummeted from one in 10 to one in 25, forcing the closure of university labs across the country. Yet even in this landscape of devastating cuts to life-saving research, the decision to kill the PBTC stands out for its cruelty -- dismantling the only systematic approach to treating the deadliest childhood cancers for what amounts to pocket change.
To put this $4 million "savings" in perspective and starkly illustrate the administration's values, as a central part of Trump's "One Big Beautiful Bill," the administration tripled ICE's budget, allocating $45 billion for building new immigration detention centers and $29.9 billion toward ICE's enforcement and deportation operations. This means that the federal government is spending more on ICE detention facilities alone than it would cost to fund the Pediatric Brain Tumor Consortium for over 11,000 years.
The government's euphemistic language cannot obscure the fact that for less than what the federal government spends in 30 seconds, they are dismantling a decades-old specialized research network established by the National Cancer Institute. Most unconscionably, even when private foundations offered to replace the entire $4 million in federal funding, the administration declared the consortium would be barred from accessing National Cancer Institute facilities, databases and other resources it needs to function -- essentially guaranteeing its death regardless of outside funding.
This is particularly devastating since the consortium fills a critical gap that private pharmaceutical companies won't touch, conducting the early-phase trials that industry often refuses to support for rare pediatric cancers. This leaves desperate families scrambling for hope while researchers watch a quarter-century of collaborative infrastructure being needlessly destroyed.
With the Trump administration shutting down cutting edge pediatric brain cancer research while lavishing massive tax breaks on the wealthy -- the centerpiece of the 'One Big Beautiful Bill' -- researchers trying to save children's lives are at a loss. As Eugene Hwang, a pediatric neuro-oncologist at Children's National Hospital in DC poignantly observed: "There is a feeling of despair; how are we going to make this work? Pediatric brain cancer was already a tough problem and now it’s becoming harder -- not because the cancer has gotten worse but because our ability to do research has become limited."
Advocates across the country are fighting to have this unconscionable decision reversed. Here's how you can help:
- Spread the word about this horrendous decision by sharing this post and encouraging others to take action.
- Call your elected officials and ask them to protect the funding and future of the PBTC and this life-saving research for kids -- to find their numbers, visit https://www.congress.gov/contact-us
- Sign the petition from the National Brain Tumor Society calling for this vital program to continue at https://braintumor.quorum.us/campaign/140510
- You can make a donation to PBTC - while private donations will not be sufficient, they can keep this critical work afloat as advocates fight for the consortium's future. Donate at https://www.pbtc.org/support-pbtc.html
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For several optimistic titles about Mighty Girl cancer survivors, we recommend “The Lemonade Club” for ages 5 to 9 (https://www.amightygirl.com/the-lemonade-club), "A Story About Cancer (With A Happy Ending)" for ages 10 and up (https://www.amightygirl.com/a-story-about-cancer), and “Side Effects” for ages 13 and up (https://www.amightygirl.com/side-effects)
To inspire children and teens with stories of trailblazing women of science whose work shows the value of supporting research, visit our blog post, "Ignite Her Curiosity: Children's Books to Inspire Science-Loving Mighty Girls," at https://www.amightygirl.com/blog?p=13914
For stories for children and teens starring Mighty Girls who keep going even in the face of adversity, visit our "Resiliency" book section at http://amgrl.co/2gkL7GW
For Mighty Girl stories that emphasize the importance of hope, visit our "Hope & Optimism" book section at http://amgrl.co/1Iz1D1d
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To read more about Trump's decision to shut down the pediatric brain cancer group, visit https://www.nytimes.com/2025/08/28/well/pediatric-brain-cancer-trial-group.html?smid=url-share, https://coloradonewsline.com/2025/09/17/childhood-brain-tumor-research-colorado/, and https://www.cnn.com/2025/09/17/politics/pediatric-brain-cancer-funding-trump
To read more about Trump's massive $75 billion spending on immigration detention and deportation through his "One Big Beautiful Bill," visit https://www.npr.org/2025/07/03/g-s1-75609/big-beautiful-bill-ice-funding-immigration -- and for an analysis on the spending, visit the Center for American Progress at https://tinyurl.com/3ypmabzh
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