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Rep. Langevin to brain tumor advocates: Keep Fighting

BOSTON, MA – Members of the National Brain Tumor Society staff, scientific researchers and brain tumor advocates met with Representative Jim Langevin (RI) to discuss the needs of the brain tumor community.

During the month of May, and thanks to your efforts, Rep. Langevin and Rep McCaul (TX)  wrote a letter urging the House Department of Defense Appropriations Subcommittee to include pediatric brain tumors as an eligible funding topic in the Peer Review Cancer Research Program. Their leadership brought even more representatives into the fold for this vital issue. Rep. Langevin remains committed to the issue and urges all of you to keep contacting your representatives and senators about the issue.

“Your personal story creates a human connection for Congress,” Rep. Langevin said.

Our patient advocates thanked Rep. Langevin personally and let him know that this was but one facet to our approach of improving the lives of the thousands of brain tumor patients in the United States.

Dr. Patrick Wen of Dana-Farber Cancer Institute discussed the current research in the brain tumor arena. The funding of many of these promising areas of science are done through the NIH and NCI, and their continuing funding efforts are crucial to scientists discovering new treatments and an eventual cure. Rep. Langevin expressed his committment to increasing NIH funding and acknowledged that more work needs to be done.


Jeremy Pivor and Lainey Titus Samant

“Todays event reiterated the power and necessity of the advocate voice,” said Tyler Gately, Manager of Advocacy and Volunteers for NBTS. “Without our community taking action, our recent and future victories would not and will not occur.”

Finally, the highlight of our advocacy conversation came from Jeremy Pivor. Jeremy is an 11-year brain tumor survivor living with an oligodendroglioma. Currently treated my Dr. Wen for his tumor’s recurrence, Jeremy explained to Rep. Langevin that brain tumor patients need access to affordable chemotherapy, and that oral chemotherapy is not covered by health insurance in the same way as traditional chemotherapy.  As Rep. Langevin had previously supported the bill, he asked that the advocates please send it again to his staff to review.

This meeting has been part of a powerful dialogue that our advocates began. Who are they? They’re you. And that’s why we’re asking you to help us today. Please contact your members of Congress and help use your stories to get them to support oral chemotherapy parity and the other crucial issues that affect brain tumor research and treatment.


Rep. Langevin with advocate and brain tumor survivor, Jeremy Pivor, talking about the importance of oral chemotherapy parity.


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