National Brain Tumor Society – Public Policy and Advocacy Update
Vol. 2 No. 9
September 19, 2012
- NBTS Statement on FDA Approval of Therapy for Rare Pediatric Brain Tumor
- Brain tumor research and the federal budget
- Wanted: Wyoming advocates!
- Advocate of the Month: Pati Urias
NBTS Statement on FDA Approval of Therapy for Rare Pediatric Brain Tumor
Recently, the Food and Drug Administration (FDA) approved a new therapy for subendymal giant cell astrocytoma, a rare pediatric brain tumor associated with people with tubular sclerosis. The FDA’s approval represents a good example of the FDA looking to approve a pediatric application of a previously approved adult therapy. The newly approved therapy is called Afinitor Disperz, a product of Novartis. A key part of our advocacy is to encourage the FDA to accelerate the review and approval process for pediatric brain tumors. To see our statement on the news, please visit the website.
Brain tumor research and the federal budget
Now that Members of Congress have wrapped up their August Congressional recess and are returning to Washington DC, eyes are turning to the yet-to-be-resolved federal budget for fiscal year 2013. As our advocates know, the budget process and its outcome is critical to brain tumor research because the largest funder of brain tumor research in the country, the National Institutes of Health, receives its funding through appropriations in the federal budget. If Congress continues to move the federal budget forward with continuing resolutions that only maintain level funding, NIH will receive less than the $32.7 billion that we and other members of the One Voice Against Cancer coalition have been advocating for, resulting in a budget that does not keep pace with inflation and is squeezed tighter every year. Even more troubling, if the sequester takes effect, NIH will receive a budget cut of up to 8%, resulting in less funding for critical research, slower progress, and potentially fewer breakthroughs. To learn more about these two potential scenarios, please see our latest alert. We’ll keep you informed of the latest updates as things move forward and let you know when it is the right time for us to weigh in as a community. In the meantime, be sure to write to your Members of Congress about why NIH is so important to the brain tumor community using our current NIH action.
Wanted: Wyoming advocates!
As a brain tumor advocate with the National Brain Tumor Society, you are part of a network of passionate, committed volunteers in 49 states across the US! Members of Congress in almost every state have received messages asking for support on policy issues that are critical to this community. There is just one state remaining – Wyoming. The Wyoming Congressional delegation is very important to our efforts, with a Senator that holds a leadership position on the key committee of Health, Education, Labor & Pensions and a Representative on the Appropriations committee, which helps determine funding levels in the federal budget. Do you know someone in Wyoming? Tell them why you are a brain tumor advocate and ask them to sign up today!
Advocate of the Month: Pati Urias
This month, we honor Pati Urias of Arizona for her unwaivering dedication to the brain tumor community. Pati has pledged her energy, passion, expertise, and time to fighting brain tumors in honor of her son, Colin. After traveling to Washington, DC last May for Head to the Hill, Pati carried the message back home, recruiting others to advocate and traveling the state of Arizona with fellow advocates during August Congressional recess to ensure that the local offices of the entire Arizona Congressional delegation learned of the critical issues that face our community. Whether she’s leading the community as the Chair of the Phoenix Brain Tumor Walk, raising awareness in the media, serving as a support system for parents of children with brain tumors, or leading advocacy efforts in her state, Pati is a committed and inspiring fighter for the brain tumor community. Thank you, Pati, for all you do!