In the News

WASHINGTON — Members of Congress from both parties are sounding the alarm about the National Cancer Institute’s decision to halt funding for the Pediatric Brain Tumor Consortium.

That’s a network of academic centers and children’s hospitals, including New York’s Memorial Sloan Kettering Cancer Center, that has worked for more than a quarter century to advance new treatments for brain cancer in children.

The consortium confirmed to Spectrum News that it would not receive federal funding beyond March next year and will dissolve.

Gaylon Hayden heads Book for Hope, a Kentucky nonprofit that financially supports the families of children battling cancer.

“Any time the funding stops for brain cancer … for children, that’s an alarm bell that goes off in my head, just because of the fact that Kentucky has such a high pediatric brain cancer rate,” Hayden said.

Kentucky has the fourth highest rate of pediatric brain and central nervous system tumors in the nation, according to a report by the Kentucky Cancer Registry at the University of Kentucky Markey Cancer Center.  

Rep. Laura Gillen, D-N.Y., Sen. Kirsten Gillibrand, D-N.Y., and Rep. Mike Lawler, R-N.Y., have written to the U.S. Department of Health and Human Services saying the funding decision could undermine critical research and should be reversed.

“This decision is devastating for patients, for researchers, and for so many affected by pediatric brain cancer,” they wrote in a letter. “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.”

The National Cancer Institute website says it is transitioning pediatric brain tumor trials from the consortium to a different network of 42 children’s hospitals.

“Over time, the fields of pediatric drug development and brain tumor research have evolved considerably,” a spokesperson for HHS told Spectrum News Monday. “After reviewing this changing landscape, NCI has concluded that its resources can be used most effectively by expanding support for the Children’s Oncology Group Pediatric Early Phase Clinical Trials Network … Importantly, we do not anticipate any funding gap for pediatric brain tumor research.”

The National Brain Tumor Society, which endorsed the New York lawmakers’ letter, also has started a petition, urging the National Cancer Institute to reconsider its decision and continue funding the consortium.