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National Brain Tumor Society’s Annual “Head to the Hill” Floods the Halls of Congress with Brain Tumor Advocates

Published on May 3, 2016 in Press Release

Nearly 300 brain tumor patients, survivors, caregivers, and loved ones from 39 states travel to Capitol Hill to advocate for policies that meet the needs of the brain tumor community

National Brain Tumor Society (NBTS), the largest nonprofit dedicated to the brain tumor community in the United States, today brought nearly 300 brain tumor advocates to the halls of Congress as part of its annual “Head to the Hill” advocacy event. With more than 290 advocates from 39 states and Puerto Rico taking part, Head to the Hill 2016 is the largest brain tumor-specific advocacy event to ever take place on Capitol Hill.

Volunteer advocates, comprising brain tumor patients, survivors, caregivers, and loved ones – most of whom paid their own way to Washington, D.C. – joined NBTS staff in asking members of Congress to support three public policy priorities that are critical needs for the brain tumor community.

“Our volunteer advocates have powerful stories to tell,” said David Arons, Chief Executive Officer, National Brain Tumor Society. “And their voices can make a difference when it comes to ensuring decision-makers in our nation’s capital understand what this patient population, their caregivers and loved ones, have gone through – or are currently going through – and thus the policies that would be needed to move the needle toward a better future for the brain tumor community.”

National Brain Tumor Society’s volunteer advocates and its staff are holding more than 200 meetings with congressional offices, where the asks will include the top items from the organization’s 2016 Legislative Agenda:

Appropriations for Medical Research and Drug Development
Brain tumors are often equal parts neurological disease as well as one of the deadliest forms of cancer. They also have among the fewest therapeutic options of any cancer. Funding for biomedical research and drug development initiatives will be critical in delivering progress toward much needed new, effective treatments for brain tumors. Private philanthropy alone cannot substitute for the key leadership that the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA) play in the drug discovery, development, and approval process. Nor can private philanthropy bring the same resources to bear in the fight against diseases like brain tumors.

Congress should continue its commitment to the fight against cancer, including brain tumors, that was made in the FY2016 budget by increasing appropriations for NIH in FY2017 to $34.5 billion, with a commensurate increase for NCI to $5.9 billion, including $680 million for the Vice President’s Cancer Initiative.

Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act
Pediatric brain tumors are now the most common form of tumor in children and adolescents under 19, and the leading cause of cancer-related death in all children and adolescents under 14. While progress has been made against some forms of pediatric brain tumors, the most prevalent form – gliomas – have seen little increase in survival rates over the past four decades. Children with high-grade gliomas only have an approximate 20% chance of long-term survival. Even if children with pediatric brain tumor survive their disease, current standard treatment approaches can leave a child with developmental delays and a lifetime of neurological and other problems.

National Brain Tumor Society, as part of the Alliance for Childhood Cancer, helped craft and advocate for the introduction of the Childhood Cancer Survivorship, Treatment, Access, Research (STAR) Act (H.R. 3381/S.1883), which would improve pediatric cancer research and drug development through policy changes and funding increases, in 2015. Now, Congress should support the passage of the STAR ACT, and help to continue to move the bills through the legislative process.

Oral Chemotherapy Parity
Temodar (temozolomide) is the standard of care drug for a large percentage of brain tumor patients whose treatment includes chemotherapy. Temodar is almost exclusively administered orally, and for this reason health insurance companies often cover the treatment as a prescription drug benefit, rather than as a major medical benefit, such as traditional intravenous chemotherapy. The result is that patients are often subjected to burdensome monthly prescription drug co-pays and co-insurance in order to access a medically-necessary treatment.

Congress should support oral chemotherapy parity legislation. The Cancer Drug Coverage Parity Act (HR 2739/S 1566) would require health plans to cover oral chemotherapy on an equal basis as chemotherapy given through hospital administered IV or injection. Not only is access to oral chemotherapy critical to delivering the standard of care, it can be beneficial to the patient’s quality of life, as he or she can undergo treatment at home instead of traveling to a hospital. Health insurance should facilitate brain tumor treatment, and not create a financial barrier to it, or dis-incentivize the development of new anti-cancer medicines that will be self-administered.

“Head to the Hill is a chance to really make an impact for the brain tumor community. Last year, our meetings during Head to the Hill helped ensure that pediatric brain tumors were once again made an area eligible for research under the Department of Defense’s Congressionally Directed Medical Research Program’s Peer Review Cancer Research Program,” said Matt Hanson, an advocate from Seattle, Washington. “We also added our voices to the collective effort of medical research advocates asking for increases in funding at NIH, and were happy to see the biggest increase in funding for that agency in 12 years come to fruition in the FY2016 budget deal. We believe, with an even bigger presence this year, we can continue to make an impact for the nearly 700,000 Americans currently living with a brain tumor and all of those who will be diagnosed in the future.”

Approximately 78,000 Americans will receive a brain tumor diagnosis this year, and an estimated 16,000 people will die because of a primary malignant brain tumor in 2016. 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, 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. NBTS is a Charity Navigator Four-Star designated nonprofit. To learn more visit

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