National Brain Tumor Society Public Policy and Advocacy Update

Vol. 5, No. 3

March 2015

Sign Up Today for Head to the Hill 
Educating Congress about Precision Medicine and Brain Tumors
Next Steps with Appropriations for Research

Fighting for Faster Drug Approvals and Better Treatments: The 21st Century Cures Initiative

Sign Up Today for Head to the Hill – Make it the Largest Brain Tumor Advocacy Event Ever!
We are just over one month away from Head to the Hill, our annual Washington, DC – based advocacy event. We are excited to report that Head to the Hill 2015 is shaping up to have record participation with 156 advocates already registered from 31 states and the District of Columbia.

It is not too late to join us in the fight against brain tumors on Capitol Hill, May 4-5. Registration is open for a couple more days until April 3. You can register by visiting the Head to the Hill website.

Head to the Hill brings together all stakeholders in the brain tumor community for a two-day event that ensures our collective voice is heard in the halls of Congress. Day one consists of an issues and advocacy training conducted by National Brain Tumor Society staff and our State Lead Advocates. On day two, advocates go to Capitol Hill and meet with the offices of their Senators and Representatives and urge them to make the fight against brain tumors a top priority in this Congress.

Educating Congress about Precision Medicine and Brain Tumors
In early March, the National Brain Tumor Society helped educate congressional staff about the importance of increasing federal funding for research aimed at precision medicine related research. As you may know, President Obama spoke of his administration’s “precision medicine” initiative in the State of the Union Address. To learn more, read our February blog here

We thank Lisa Peabody, Maryland brain tumor advocate, and Gina Memmott, Virginia State Lead Advocate, for helping to round up approximately 60 congressional staff to hear from a group of speakers including Dr. Daniel Brat, a nationally recognized neuropathologist at Emory University and one of the researchers studying molecular characteristics of brain tumors based on a highly successful federal program called The Cancer Genome Atlas. We thank the Pancreatic Cancer Action Network for their work in organizing the congressional briefing. 

Next Steps with Appropriations for Research
Congress’ process for preparing a federal fiscal year 2016 budget is fully underway. The President and the House of Representatives have passed budget blueprints and the Senate is debating their own budget resolution this week. Appropriations Committees are already taking in recommendations. National Brain Tumor Society has urged congressional appropriators to have the following priorities in the FY 2016 budget:

·      Increase NIH funding to $33 billion and NCI to $5.4 billion

·      Ensure that NCI gives priority to the Pediatric Brain Tumor Research Consortium, Pediatric            Preclinical Drug Testing Program and Pediatric genomics based MATCH trial

·      Ensure that the Department of Defense’s Congressionally Directed Medical Research                    Program includes Pediatric Brain Tumors in the Peer Review Medical Research Program

Please be on the look out for an action alert to send your letter to Congress asking for our appropriations requests for the next fiscal year.

Fighting for Faster Drug Approvals and Better Treatments: The 21st Century Cures Initiative
This Congress has been unusually active in the area of legislation aimed at accelerating drug development. We commend Reps. Fred Upton (MI) and Diana DeGette (CO), Members of the House Energy and Commerce Committee for launching an inclusive process to develop forward thinking legislation designed to accelerate and improve the development and approval of drugs and devices for people with life threatening diseases. National Brain Tumor Society has been actively participating in the process and supports a number of policy recommendations that would improve the pace of drug review for both adult and pediatric brain tumor new drug applications with the FDA. 

Please also be on the look out for a special educational email about accelerating and improving drug development through legislative efforts followed by an action opportunity over the next four to six weeks.

Thanks again for all your support and advocacy. Together we are making a difference.

David F. Arons, JD

Chief Public Policy
and Advocacy Officer

Lainey Titus Samant

Associate Director

Tyler Gately

Manager of Advocacy
and Volunteer Leadership

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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