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National Brain Tumor Society

National Brain Tumor Society Public Policy and Advocacy Update
Vol. 4, No. 10 
October 2014
  • State Lead Advocates & Advocacy Ambassadors Convene at Annual Meeting
  • Clinical Trial Endpoints Workshop
  • New “America’s Neuro-Oncologist” at NCI

Click here to view our 2014 Legislative Agenda

State Lead Advocates & Advocacy Ambassadors Convene at Annual Meeting
In early October, our current class of State Lead Advocates were joined by Advocacy Ambassadors at the National Brain Tumor Society Annual Meeting and Summit. The group discussed the National Brain Tumor Society’s Public Policy and Advocacy Agenda, as well as ways to motivate and engage brain tumor advocates year round. The group will be focusing on recruiting motivated advocates in their states to strengthen the voice of the brain tumor community in Congress in 2015. 

Advocacy Ambassadors are active participants in the National Brain Tumor Society’s Public Policy Advocacy program throughout the year. They may also engage on social media; attend our annual advocacy event, Head to the Hill, as well as meetings with their members of Congress in their home states; and attend coalition-sponsored lobby days on Capitol Hill throughout the year. 

State Lead Advocates are our senior-level advocates. In addition to engaging on the same levels as Advocacy Ambassadors, they also help recruit new advocates in their state and serve as a leader in the brain tumor community. State Lead Advocates build relationships with their members of Congress and spearhead meetings with other advocates.

If you’d like to make a difference in the fight against brain tumors through advocacy in the coming year, or be put in touch with a State Lead Advocate or Advocacy Ambassador in your state, please contact Lainey Titus Samant at advocacy@braintumor.org.

Clinical Trial Endpoints Workshop
On October 15th the Jumpstarting Brain Tumor Drug Development Coalition - including National Brain Tumor Society, Accelerate Brain Cancer Cure, The Musella Foundation for Brain Tumor Research & Information, and the Society for Neuro-Oncology - held the second of two clinical trial endpoints workshops this year. Endpoints are the ultimate benefits a drug is measured for in a clinical trial. For example while the extension of survival is an endpoint, the reduction of seizures could be another. This Workshop focused on clinical outcomes assessments (COAs) - how we measure whether a drug is not only extending survival, but also reducing the symptoms and signs of a disease, or increasing/preserving functionality for patients, such as the ability to walk or perform daily living tasks.

Our recent patient survey confirmed what we already suspected: patients not only want to live longer, but they want to alleviate symptoms and retain functioning while they battle their disease. COAs will be a way to measure whether a new treatment is doing just that as part of a clinical trial. 

The workshop was a resounding success. Over 100 people attended representing about 14 pharmaceutical companies, approximately 19 senior FDA staff, key representatives of the National Cancer Institute, neuro-oncology community leaders and, most importantly, patients and caregivers. Notably, Allison Bishof, an advocate and survivor, participated on a panel and shared her experience. 

A big take away from the workshop is how important the inclusion of patient-focused clinical outcomes assessments are going to be in the future for brain tumor drug approvals. The FDA would like to see such measures used more frequently, and asked the research community to help make the tools more accurate for measuring clinical benefit. We have also heard from pharmaceutical companies that the workshop was educational and motivational.

Based upon the workshop, we are now developing an action a plan that has the potential to increase the inclusion of patient-focused endpoints in future brain tumor clinical trials and provide brain tumor drugmakers with clarity about what drug performance measures will be acceptable for approval.

New “America’s Neuro-Oncologist” at NCI
We are pleased to let you know about the National Institutes of Health’s announcement that a new Chief of the Neuro-Oncology Branch at the National Cancer Institute has been appointed. Dr. Mark Gilbert of MD Anderson Cancer Center is the new Chief and will start in his new position by late November. To read more about the Neuro-Oncology Branch (NOB) and Dr. Gilbert’s work, visit the National Brain Tumor Society blog.  

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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