Last week, Representatives Mike Lawler (NY-17), Laura Gillen (NY-04), and Senator Kirsten Gillibrand (D-NY) sent a letter to the Department of Health and Human Services Secretary Robert F. Kennedy and National Cancer Institute Deputy Director Douglas Lowy. The lawmakers asked the agencies to reconsider proposed federal funding cuts to the Pediatric Brain Tumor Consortium (PBTC).
“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),” they wrote. “This decision could undermine critical research offering hope to children and families facing heartbreaking diagnoses. We 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.”
The lawmakers continued, “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.”
The PBTC is an association of academic centers and children’s hospitals focused on developing new treatments for pediatric brain cancer. It includes Memorial Sloan Kettering Cancer Center in New York among its members. Since 1999, PBTC has used federal funding for clinical trials aimed at treating some of the deadliest childhood brain cancers.
The National Brain Tumor Society endorsed the letter from lawmakers. David Arons, President & Chief Executive Officer of the National Brain Tumor Society, said: “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. 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.”
Congressman Lawler represents New York’s 17th Congressional District north of New York City covering all or parts of Rockland, Putnam, Dutchess, and Westchester Counties.
