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Brain Tumor Patient Advocates Take Their Message to Congress

2017-05-09

National Brain Tumor Society’s Annual Head to the Hill Advocacy Day draws hundreds from across the country to speak up on the issues critical to the brain tumor community


National Brain Tumor Society (NBTS), the largest nonprofit dedicated to the brain tumor community in the United States, today has gathered approximately 300 brain tumor advocates from 38 states to Capitol Hill as part of its annual “Head to the Hill” advocacy event.

“While not often at the top of mind for individuals who haven’t been impacted directly by this disease, brain tumors impose an extraordinarily high burden on our nation’s public health, in terms of unacceptably low survival rates, exceedingly high medical costs, and, often, life-long functional deficits of survivors,” said David Arons, Chief Executive Officer, National Brain Tumor Society. “It is therefore our responsibility as advocates to ensure that those in Washington with the ability to set national policy priorities hear directly from brain tumor patients and caregivers on the toll this disease inflicts on nearly 700,000 Americans.”

Building on legislative accomplishments during the 114th Congress, NBTS and volunteer advocates from across the country – comprising brain tumor patients, survivors, doctors, researchers, caregivers, and loved ones – are uniting to urge members of the 115th Congress to continue to support policies that will ultimately benefit those diagnosed with this devastating disease today and in the future.

“Patient advocates, including our brain tumor champions, generated tremendous momentum in the previous two years in reinvigorating our national commitment to end cancer as we know it,” continued Mr. Arons. “We’re on Capitol Hill today to highlight for Congress why lives depend on continuing the progress towards better treatments and cures.”

In more than 200 scheduled meetings with congressional offices, Head to the Hill participants will advocate for their senators and representatives to support legislative action critical to NBTS and the brain tumor community’s policy agenda for 2017, including:

Appropriations for Medical Research and Drug Development

Medical research funding is absolutely critical to finding new, effective treatments, and ultimately a cure for intractable diseases like brain tumors. Private philanthropy cannot replace the level of funding, coordination, and mechanisms needed for advancing research that is provided by the National Institutes of Health (NIH).

During the 114th Congress, the National Brain Tumor Society played an active role in the policymaking process, and thousands of brain tumor advocates raised their voices in support of increasing the level of federal investment in brain tumor research. Particularly, the enactment of the 21st Century Cures legislation, which included a number of important policy solutions as well as funding for the Beau Biden Cancer Moonshot, was a significant step in the fight against brain tumors.

The new funding stream made possible by the 21st Century Cures Act will support efforts at NIH to double the rate of progress in the fight against cancer. However, Cures Act funding alone will not be sufficient to achieve the Cancer Moonshot’s goals or to achieve our nation’s aim of reducing death and suffering from cancer, which go far beyond the Moonshot. Continued progress in the fight against brain tumors and all cancers requires sustained and meaningful increases for the NIH and NCI in the Fiscal Year 2018 budget, in addition to full funding for the Cancer Moonshot.

In Fiscal Year 2018, we request that Congress provide at least a $2 billion increase above the final FY 2017 funding level for the NIH – including a proportional increase for the National Cancer Institute (NCI) – and continue funding for the Beau Biden Cancer Moonshot and other NIH priorities as required by the 21st Century Cures Act. We ask that Congress appropriate $60 million for the Peer Review Cancer Research Program of the Congressionally Directed Medical Research Programs of the Department of Defense (DOD), and include adult and pediatric brain tumors as topics eligible for funding.

Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act

Brain tumors are the leading cause of cancer-related death for children and adolescents ages 0-19, and now responsible for three out of every ten pediatric cancer deaths. Thus, there is a vital need for more research to be funded through the NIH and for a greater emphasis on the development of new treatments through clinical research.

National Brain Tumor Society asks Congress to support the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017 (S.292 Capito/Reed/Van Hollen/ Isakson, H.R.820 McCaul/Speier/Kelly/Butterfield). National Brain Tumor Society helped create this crucial piece of legislation as part of the Alliance for Childhood Cancer. The STAR Act contains a number of important provisions which will help stimulate more effective pediatric brain tumor research and lead to better treatments that extend life and improve patients’ quality of life, including the authorization for the NCI to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials; authorizing grants to support a national childhood cancer registry to track trends in incidence and survival rates; and enhancing research on the late effects of childhood cancers.

“At the time I got involved in advocacy for NBTS in 2011, my 14-year-old son, Colin, had just passed away from a brain stem ependymoma, and I was looking for a way to channel my grief, anger and sadness into something positive, something that would matter and make a substantive difference,” said Pati Urias, an advocate from Arizona. “I’ve seen firsthand the importance of being the ‘squeaky wheel’ to ensure public dollars are directed to important legislation and programs that will contribute to medical breakthroughs. As people who have been affected by brain tumors in some way – whether we have lost a loved one, are survivors or deeply touched by a personal story we’ve heard – advocates’ passion to find a cure are vital to the cause.”

Approximately 79,000 Americans will receive a brain tumor diagnosis this year, and an estimated 17,000 people will die because of a primary malignant brain tumor in 2017. 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.

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