National Brain Tumor Society – Public Policy and Advocacy Update
Vol. 2 No. 10
October 23, 2012
- Introducing National Brain Tumor Society’s State Lead Advocate Program
- National Brain Tumor Society Weighs in on Future of NIH’s Neuro-Oncology Branch
- One Voice Against Cancer Coalition Urges Congressional Leaders to Protect Critical Funding for Cancer Programs
- Congressional Support for Oral Chemotherapy Parity Continues to Grow
- October Advocate of the Month: Clint Murphy of Georgia
Introducing National Brain Tumor Society’s State Lead Advocate Program
This month, the National Brain Tumor Society kicked off our first-ever State Lead Advocate Program. The State Lead Advocates represent some of our most active and engaged volunteer advocates, who have committed to playing the role of lead recruiter, mobilizer, and spokesperson in their states. Members of the first class, which will serve for the 2013-2014 Congressional sessions, came together for the first time during the National Brain Tumor Society 2012 Summit to kick off the program, learn more about their new roles, and plan for the work ahead. Over the next several months, we’ll feature these amazing advocates and the work that they are doing in their states here in the Public Policy Update.
National Brain Tumor Society Weighs in on Future of NIH’s Neuro-Oncology Branch
In the August edition of Enews, we let you know about Dr. Howard Fine’s new position as Director of the new NYU Brain Tumor Center in New York, NY. Prior to this move, Dr. Fine was the Director of the National Cancer Institute’s (NCI) Center for Cancer Research Neuro-Oncology Branch.
The Branch, which has provide patients with high-quality care and access to clinical trials, is now in a time of transition and has not yet named a new Director. In a letter to Dr. Harold Varmus, Director of NCI, members of the National Brain Tumor Society’s Medical and Scientific Advisory Boards communicated specific ideas to NCI about the future of the Neuro-Oncology Branch. A key point made by these experts is the desire to ensure that patients, families, and caregivers are educated on the available services from the Branch and that the Branch continues to be a leader in the fight against this disease. To learn more, read our statement and the letter.
UPDATE: In response to our letter, Robert H. Wiltrout, Ph.D. , Director of the Center for Cancer Research, and Lee J. Helman, M.D., Scientific Director for Clinical Research, provided an update on the recent transition efforts at the Neuro-Oncology Branch, including the naming of an interim Director, Dr. Teri Kreisl, and an international recruiting effort to name a new Director.
One Voice Against Cancer Coalition Urges Congressional Leaders to Protect Critical Funding for Cancer Programs
As a member of the One Voice Against Cancer Coalition, National Brain Tumor Society joined 40 of the largest cancer patient advocacy groups in signing on to a letter to Congressional leadership outlining the potentially devastating effects sequestration could have on progress made in the fight against cancer. See the letter here. Take action today to let your elected officials know that we cannot afford to let budget cuts set back process against brain tumors.
Congressional Support for Oral Chemotherapy Parity Continues to Grow
Your efforts are paying off to build support for oral chemotherapy parity legislation. As of this month, there are now 53 cosponsors signed on to the House bill (HR 2746). That’s up from 18 cosponsors when we made it a priority issue at Head to the Hill. And, we now know that there is strong interest on the Senate side in introducing a companion bill. Thank you for all you have done to move this issue forward. We will continue to update you on its progress.
October Advocate of the Month: Clint Murphy of Georgia
This month, we recognize one of our new State Lead Advocates – Clint Murphy of Georgia. Clint first came to be a brain tumor advocate with the National Brain Tumor Society last Spring, when his fierce advocacy in support of oral chemotherapy parity was clear as he tirelessly worked to educate his Congressional delegation on the issue. Clint was not deterred by the questions and concerns he received in response to his advocacy; he worked with our staff to address them thoughtfully and to continue to push for the support of his state’s Representatives.
But, he wasn’t done there. Clint wanted to continue what he had started, recognizing the need for more awareness, more education, and more support for this community. So, he signed on as the Georgia Lead Advocate. Clint’s advocacy is driven by his experience as a caretaker for his mother who lost her battle with brain cancer two years ago. During that time, he learned first hand about the needs of this community. Thank you, Clint, for your dedication. We look forward to working with you to bring the voice of the Georgia brain tumor community to policymakers in Atlanta and in Washington DC!
Thank you again to all our advocates for you continued advocacy.