Gillibrand, Gillen, Lawler Demand Reversal Of Proposed Cuts To Pediatric Brain Tumor Consortium; Raise Alarm On Impact To NY Pediatric Brain Cancer Patients

Gillibrand, Gillen, Lawler Demand Reversal Of Proposed Cuts To Pediatric Brain Tumor Consortium; Raise Alarm On Impact To NY Pediatric Brain Cancer Patients

Sep 26, 2025

Today, Senator Kirsten Gillibrand (D-NY), Congresswoman Laura Gillen (D-NY-04), and Congressman Mike Lawler (R-NY-17) sent a bipartisan letter to Department of Health and Human Services Secretary Robert F. Kennedy Jr. and National Cancer Institute (NCI) Principal Deputy Director Douglas Lowy calling on their agencies to reconsider proposed federal funding cuts to the Pediatric Brain Tumor Consortium (PBTC).

In August, NCI announced that PBTC member institutions would no longer be eligible to apply for federal funding through the program beyond March 2026. This decision could threaten access to care for patients currently on waiting lists or enrolled in clinical trials funded through PBTC at member institutions.

"The Pediatric Brain Tumor Consortium does lifesaving work in pursuit of treatments for pediatric brain cancers," said Senator Gillibrand. "By cutting funding for this critical consortium, the Trump administration is putting children's lives at risk. Without funding, the PBTC could be forced to stop treatment for patients undergoing therapy and turn away terminally ill pediatric cancer patients on waiting lists for these trials. That is absolutely abhorrent. I am calling on the Trump administration to immediately reverse this decision so that patients and their families can continue to access the support, research, and treatment they need in the face of a heartbreaking pediatric cancer diagnosis."

The PBTC is a network of academic centers and children's hospitals, including the Memorial Sloan Kettering Cancer Center and Roswell Park Comprehensive Cancer Center in New York, dedicated to understanding and developing novel treatments for pediatric brain tumors through multi-center, multidisciplinary clinical trials. Since 1999, the PBTC has utilized federal dollars to develop lifesaving therapies to treat some of the deadliest pediatric brain cancers.

The letter was endorsed by the National Brain Tumor Society.

"Before the Pediatric Brain Tumor Consortium (PBTC), there was no coordinated, systematic approach to prioritize and evaluate promising therapies for children and young adults with brain tumors-the leading cause of childhood cancer death," said David Arons, President & Chief Executive Officer of the National Brain Tumor Society. "Since 1999, as the only NCI-funded initiative solely focused on early-phase pediatric brain tumor trials, the PBTC has played a pivotal role in advancing potential new treatments for these vulnerable patients. Closing it would weaken an already fragile but essential research and drug development ecosystem unless an even stronger, durable, and equally focused network is established. As advocates, the National Brain Tumor Society must urge NCI to sustain PBTC's critical functions and work."

The full letter can be found HERE and below.

Dear Secretary Kennedy and Dr. Lowy:

We are deeply concerned by the National Cancer Institute's decision to terminate funding for the Pediatric Brain Tumor Consortium (PBTC) and transition the PBTC's functions over to the Pediatric Early Phase Clinical Trials Network (PEP-CTN). This decision could undermine critical research offering hope to children and families facing heartbreaking diagnoses. I urge you to reverse this decision and provide clarity on this decision to researchers, families, and most importantly, patients who will be affected by this change.

As you know, brain and spinal cord tumors are the most common types of solid tumor found in children, accounting for about one in five cancers in all patients under the age of fifteen. Voluntary clinical trials are an indispensable practice for medical professionals to evaluate the safety and effectiveness of new treatments. For many patients and families, these trials represent the only option after conventional treatments fail.

The PBTC is an association of academic centers and children's hospitals, including the Memorial Sloan Kettering Cancer Center in New York, dedicated to trials of novel treatments for pediatric brain cancer. Since 1999, the PBTC has made use of Federal dollars to develop lifesaving therapies to treat some of the deadliest pediatric brain cancers.

Last month, the PBTC was informed that it would receive no Federal funding beyond March 2026. Terminal patients on waiting lists for these trials will no longer be able to enroll in these critical trials, and those currently enrolled may lose access to the trials for a period of time as studies are put on hold due to lack of funding.

We understand the Administration intends to transition the PBTC to PEP-CTN, but the PEP-CTN's mission is far too broad and will result in the de-prioritization of pediatric brain cancer trials, in favor of other pediatric cancer trials. A specialized center focused solely on pediatric brain cancer is essential to the success of brain tumor research in the future. Additionally, we have concerns that some patients may be lost in the fold during this transition, and that crucial time will be lost as well. For patients on PBTC trials, every second counts.

This decision is devastating for patients, for researchers, and for so many affected by pediatric brain cancer. We cannot afford to take this step backward, and we stand ready to work on a bipartisan basis in Congress to ensure that this research continues in full and that the United States continues to support research, innovation and medical breakthroughs.

We urge you to reconsider this harmful decision, and we look forward to your response.

Regards,

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