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Brain Tumor Advocates from Across the United States “Head to the Hill” to Meet with Members of Congress

2018-05-08

National Brain Tumor Society’s Annual Head to the Hill Advocacy Day puts brain tumor research funding, treatment development, and patient care on the legislative agenda in Washington, D.C.


Washington, D.C. – National Brain Tumor Society (NBTS), the largest nonprofit dedicated to the brain tumor community in the United States, today rallied hundreds of brain tumor advocates from 38 states on Capitol Hill as part of its annual “Head to the Hill” advocacy event. Volunteer brain tumor advocates and NBTS staff held more than 200 meetings with members of Congress and their aides to discuss the policy needs of brain tumor patients, survivors, and care partners.

“In order to make progress against brain tumors, it is imperative that policymakers understand the burden brain tumors inflict on patients, their loved ones, society and the economy,” said David Arons, Chief Executive Officer, National Brain Tumor Society. “There is no better opportunity to make our case for support than to head to Capitol Hill, put faces to our issues, and make our priorities tangible and visceral for Congress.”

At Head to the Hill 2018, NBTS and its advocates urged their representatives and senators to use the remainder of the 115th Congress to continue working aggressively to advance patient-focused policy that provides robust funding for medical research, accelerates drug discovery and development, and improves and/or saves the lives of the nearly 700,000 living with a brain tumor.

“In recent years, Congress has demonstrated a bipartisan commitment to support biomedical research funding,” added Mr. Arons. “While we greatly appreciate and thank members for significant increases in appropriations to agencies like the National Institutes of Health (NIH) and the National Cancer Institute (NCI), opportunities remain to build on these funding increases as well as develop and enact critical legislation that can do more to equip America’s talented scientific and medical workforces with the resources and tools they need to help end suffering from debilitating illnesses like brain tumors.”

Specifically, Head to the Hill participants requested Congress continue its robust funding of medical research in Fiscal Year 2019 (FY19) by increasing the NIH budget to $39.3 billion and the NCI line-item to $6.375 billion, while ensuring full-funding for the Cancer Moonshot initiative and other priorities as legislated by the 21st Century Cures Act. Additionally, brain tumor advocates requested that the Peer-Review Cancer Research Program of the Department of Defense receive appropriations of $80 million in FY19, while again making pediatric brain tumors and brain cancer eligible funding topics within this program.

Beyond appropriations, participants also thanked U.S. senators for passing the Childhood Cancer STAR Act this past March, and asked that all senators sign Sen. Jack Reed’s appropriations letter to fully fund the bill once it becomes law. In the U.S. House of Representatives, advocates called on their representatives to quickly move to pass its version of the Childhood Cancer Star Act (H.R. 820 – McCaul/Speier/Kelly/Butterfield), which nearly 80 percent of the chamber has endorsed as co-sponsors.

“Head to the Hill was a very empowering event. After losing my dad, I thought, ‘That’s it, brain cancer won,’” said Kari Tripses an advocate from Missouri who has attended Head to the Hill. “But I learned there is still so much more to fight for and there is no better way to honor one’s memory than to use your voice.”

In addition to Head to the Hill, NBTS also held a Congressional Action Day to allow those who were unable to attend the event in D.C. to call or email their members of Congress to amplify the voices of those on the Hill.

Nearly 80,000 Americans will receive a brain tumor diagnosis in 2018, and with only a 35 percent five-year survival rate for primary malignant brain tumors, an estimated 17,000 people will die because of brain cancer this year. Brain tumors are now the leading cause of cancer-related death in children 19-years old and younger, accounting for three out of every 10 cancer deaths. More so than any other cancer, a brain tumor can have life-altering psychological, cognitive, behavioral, and physical effects. There are no known prevention or early detection methods, few available treatments, and there is no cure.

About National Brain Tumor Society

National Brain Tumor Society (NBTS) is the largest nonprofit organization in the U.S. dedicated to the brain tumor community. We are fiercely committed to finding better treatments and driving rapid progress toward a cure for brain tumors. We drive a multi-faceted and thoughtful approach to aggressively influence and fund strategic research, as well as advocate for public policy changes, in order to achieve the greatest impact, results, and progress for brain tumor patients. Money raised by the generous donations of our supporters has directly funded groundbreaking discoveries, programs, clinical trials and policy initiatives. To learn more visit www.braintumor.org

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