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National Brain Tumor Society

National Brain Tumor Society Public Policy and Advocacy Update
Vol. 4, No. 3

March 2014

  • Don't miss Head to the Hill 2014!
  • Improving Pediatric Brain Tumor Research and Drug Development
  • One Voice Against Cancer Lobby Day
  • Oral Chemotherapy Parity Across the Country 
Don’t miss Head to the Hill 2014!
Registration for the National Brain Tumor Society’s annual Head to the Hill advocacy event in Washington, D.C. is closing soon. Do not miss this opportunity to lend your voice in support of the brain tumor community! This annual event continues to be a powerful vehicle for brain tumor advocates from across the country to join together and educate Congress on the critical issues facing brain tumor patients, survivors, caregivers, and the future of research. We hope you will be able to share the experience with us this year on May 5 - 6.

Learn more and register today - and make a difference for the nearly 700,000 Americans living with a brain tumor and all those diagnosed in the future. Once registered, we will provide you and fellow advocates with training so you can be a strong voice on Capitol Hill.

Questions? Click here for our FAQ page. Any further questions, please contact Lainey Titus Samant, Associate Director of Public Policy, at advocacy@braintumor.org or 617.393.2862.

Improving Pediatric Brain Tumor Research and Drug Development
In mid-March, more than 50 leaders from cancer patient advocacy organizations, pediatric brain tumor research centers, government institutions, and biopharmaceutical companies converged on Washington, D.C. for the Availability of Drugs for Pediatric Brain Tumor and Cancer Research: Pre-clinical and Clinical Working Group meeting. National Brain Tumor Society organized the Working Group under the umbrella of our latest pediatric initiative, Project Impact, that has two major, integrated parts: 1) to improve the way new treatments for pediatric brain tumors and cancer are discovered and evaluated, with the aim of accelerating research from the lab to the clinic and, 2) to improve the public policy and regulatory environment to reduce the barriers to biopharmaceutical company entry into pediatric brain tumor clinical trials.

The meeting concluded with participants agreeing to continue moving forward with plans to: 1) Create the next-generation pediatric brain tumor pre-clinical testing platform, 2) Form a governance structure that will help support the development of the pre-clinical platform, and 3) de-risk the pediatric cancer clinical trial space. 

These efforts will seek to fund better science, develop the right structure to support the science, and create the right environment and pathways to more easily move any potential new therapies through the evaluation and approval process into the hands of the patients who so desperately need them. Stay tuned in the coming months for more updates on Project Impact.

One Voice Against Cancer Lobby Day
While local brain tumor advocates and National Brain Tumor Society staff were at the Capitol in Washington, D.C. on March 12, hundreds of additional brain tumor advocates from across the country were emailing their members of Congress with a clear message: medical research funded by the National Institutes of Health (NIH) and the National Cancer Institute (NCI) is critical to the needs of the brain tumor community.

Thanks to those of you who took part in the One Voice Against Cancer (OVAC) lobby day, whether in person or virtually, and for asking Congress to submit Fiscal Year 2015 funding requests of $32 billion for the NIH, which would include $5.26 billion for the NCI. This would be an increase of approximately $2 billion for NIH, which would allow for the funding of vital medical research and drug development so that better treatments, and ultimately a cure, can be discovered.

If you didn’t get a chance to contact your member of Congress, it’s not too late. Your elected representatives have until April 4, 2014 to submit their funding requests for Fiscal Year 2015. Join us today to let Congress know that we need their help in the fight against brain tumors. Email your members of Congress now!

Oral Chemotherapy Parity Across the Country
Advocates fighting for oral chemotherapy parity in State Legislatures across the country have enjoyed success in 2014. In February, Maine became the 28th state to pass a bill into law, which will require that oral and intravenous chemotherapy be covered on an equal basis. Missouri soon followed with a law of their own in mid-March. Wisconsin, Kentucky, and Arizona may not be far behind, as oral chemotherapy parity bills have recently picked up momentum in their respective legislatures.

Although these victories will certainly provide relief for brain tumor patients in states with oral chemotherapy parity, state legislation only impacts individual health plans, small group plans that are not self-insured (regulated by the Federal ERISA law), and state employee plans. Therefore, we must also continue to advocate for passage of federal legislation, such as the Cancer Drug Coverage Parity Act (HR 1801) and the Cancer Treatment Parity Act (S. 1879), to guarantee coverage for cancer patients participating in ERISA-regulated plans. 

As always, thank you for your advocacy. Together, we are making a difference in the fight against brain tumors.

David F. Arons
Senior Director of Public Policy 

National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and those who will be diagnosed tomorrow. This means effecting change in the system at all levels. It's time to build on progress and transform tomorrow today.

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