National Brain Tumor Society - Public Policy and Advocacy Update
Vol. 2. No. 5
May 17, 2012
• Brain Tumor Advocates “Head to the Hill” to Deliver Policy Priorities
• Legislation Advancing in Congress That Would Speed Approval of Treatments
• NIH and Brain Tumor Research Funding Update
• Oral Chemotherapy Parity – What’s Next
Brain Tumor Advocates “Head to the Hill” to Deliver Policy Priorities
Over 100 brain tumor patients, caregivers, and supporters went to Capitol Hill on May 8 for National Brain Tumor Society’s Head to the Hill advocacy day co-sponsored by Accelerate Brain Cancer Cure. By far, most of the people who attended had never advocated on public policy issues before. At the end of the advocacy training workshop held the day before, the advocates were ready. We knew right away we were making a difference when Rep. Jim Moran (VA) walked down the Capitol steps to meet with us. As the parent of a brain tumor survivor he moved his schedule around to be with us. For photos and a recap, visit our Head to the Hill 2012 page. The event was a great way to kick off Brain Tumor Awareness Month and will be followed up by local, in-district meetings with Members of Congress in August. Let us know if you’re interested in meeting with your Member of Congress on brain tumor policy issues.
Legislation Advancing in Congress That Would Speed Approval of Treatments
As discussed in earlier updates, Congress is considering legislation that would give the Food and Drug Administration the ability to devote more resources to scientifically evaluating treatments aimed at life-threatening diseases and approve them more quickly. Known as the Prescription Drug User Fee Act (PDUFA), the legislation is one of the few health related bills that is likely to pass this year. We support the passage of the legislation now being considered by the House and Senate respectively. See our fact sheet for more information.
NIH and Brain Tumor Research Funding Update
The Fiscal Year 2013 budget process is continuing with most of the debate about whether Congress can reach a deal over long-term federal budget deficit reduction in order to avoid the deep across the board cuts to federal programs (called sequestration). Under last year’s agreement, if Congress and the President do not act, then by 2013 there will be significant budget cuts including to the National Institutes of Health (NIH). Last year, due to your advocacy, NIH was not cut. This year the pressure is much greater. To maintain grants and initiatives designed to strengthen research including on brain tumors we must let Congress know that NIH is to be held harmless. Please sign up for our brain tumor research advocacy campaign by becoming and advocate.
Thanks again for your strong advocacy!
David F. Arons, J.D.
Director of Public Policy