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National Brain Tumor Society’s Annual “Head to the Hill” Lobby Day Draws Record Crowds to Advocate on Behalf of Brain Tumor Community

2015-05-07

Brain tumor patients, survivors, and caregivers from across the country meet with congressional leaders to discuss issues facing the community

National Brain Tumor Society, the largest nonprofit dedicated to the brain tumor community in the United States, yesterday rallied more than 200 brain tumor advocates from across the country for its fifth annual “Head to the Hill” advocacy day in Washington, D.C. This year’s Head to the Hill was the largest to date. Advocates from 38 states and the District of Columbia conducted more than 180 meetings with congressional offices to educate members and staff on the critical issues currently facing the brain tumor community.

“Head to the Hill is an opportunity for brain tumor patients, survivors, and caregivers to bring their stories to elected officials and ask them to help address the needs of the brain tumor community through public policy,” said David Arons, Chief Public Policy & Advocacy Officer, National Brain Tumor Society. “This annual event has become a signature vehicle through which brain tumor advocates can pursue a cure through tangible action.”

Nearly 700,000 Americans are currently living with a primary brain tumor, and an estimated 14,000 people will die because of a primary malignant brain tumor this year. 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. National Brain Tumor Society’s mission is to create systematic change that will lead to better treatments and ultimately a cure for brain tumors.

National Brain Tumor Society’s 2015 legislative agenda provides support for key policy areas and legislation that are aimed to advance drug development in adult and pediatric brain tumors, raise federal resources for brain tumor research, and improve the ability of patients to access essential treatments.

“Our advocates asked Congress to renew its historic, bipartisan commitment to biomedical research, by increasing appropriations for the NIH in FY 2016 by 10% to $33 billion, with a commensurate increase for the National Cancer Institute (NCI) to $5.44 billion, as well as provide an appropriation of $2.8 billion for the FDA,” said Arons. “Advocates also told their delegations that health insurance should facilitate brain tumor treatment and not create financial barriers to it.”

Appropriations for Medical Research and Drug Development

Brain tumors are often equal parts neurological disease and one of the deadliest forms of cancer. They also have among the fewest therapeutic options. Funding for biomedical research and drug development initiatives will be critical in delivering progress toward much needed new and effective treatments for brain tumors. Private philanthropy alone cannot fill in 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.

Pediatric Brain Tumor Specific Research

Pediatric brain tumors are now the most prevalent form of cancer 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 three decades. Children with high-grade gliomas only have a 15-30% chance of living five years past their diagnosis. Even if a child with a pediatric brain tumor survives their disease, current standard treatment approaches – consisting mainly of radiation and/or surgery – can leave a child with developmental delays and lifetime of neurological problems.

The U.S. Department of Defense’s Congressionally Directed Medical Research Programs (CDMRP) has historically used their Peer Preview Cancer Research Program to provide vital funding to high-impact brain tumor research projects. Pediatric brain tumors had been one of the eligible topics in the CDMRP since its beginning in 2009, but was left out in 2015. Advocates asked congress to include pediatric brain tumors again as an eligible topic in FY 2016. This is a revenue neutral issue, as simply the words “pediatric brain tumors” need to be added to the appropriations report language for the program.

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.

Advocates pressed members of Congress to support oral chemotherapy parity legislation. Bipartisan legislation that would require health plans to cover oral chemotherapy on an equal basis as the intravenous or injected varieties is expected to be introduced in Congress this year.

“I would like to thank all our advocates, many traveling hundreds and thousands of miles at their own expense, for joining with us to tell policymakers in our nation’s capital that more needs to be done to support brain tumor patients,” said Sally Davis, Chief Executive Officer, National Brain Tumor Society. “Head to the Hill continues to grow every year and it’s a testament to the dedication and tenacity of the brain tumor community.”

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