National Brain Tumor Society Public Policy and Advocacy Update

Vol. 5, No. 5

May 2015

Brain Tumor Awareness Month in Review
Thanks to you all the patients, caregivers, family and friends in our community – Brain Tumor Awareness Month (May 2015) was among the best ever. It began with a terrific Bay Area Brain Tumor Walk followed by Race for Hope - DC and Head to the Hill. The Grey Soiree was an amazing and successful event, and the Boston Brain Tumor Ride continued it's over twenty year tradition of raising funds and awareness. Our cause was honored last week with U.S. Representative Joe Kennedy’s speech on the floor of the House of Representatives about the importance of Brain Tumor Awareness month – see it here.

We are continuing to urge Congress to help in the fight against brain tumors. See the recent op-ed piece by Sally Davis, CEO of National Brain Tumor Society, published in The Hill, a leading Capitol Hill newspaper read by Congress.

Head to the Hill 2015 – Bigger and Better – Thanks to You!
Wow! What a great Head to the Hill event. Thanks to the over 200 advocates who participated in the two day event, our message was delivered to over 190 Capitol Hill offices representing 38 states. Our agenda was heard and we know this because of all the responses from the offices of Senators and Representatives. In particular, Senator Susan Collins from Maine referenced the brain tumor advocates she met with at a Senate hearing on the topic of precision medicine. A special thanks again to all our volunteer leaders including our State Lead Advocates that helped make this year’s Head to the Hill the best ever! And thanks to all of you who participated by calling in via phone and emailing Congress during the month of May. Check out the impact of #head2hill on spreading brain tumor awareness here.

21st Century Cures Legislation – A Comprehensive and Powerful Bill
The House of Representatives' Energy and Commerce Committee, led by Chairman Fred Upton from Michigan, has been working on legislation for almost a year that, if passed, could help stimulate brain tumor research and the development of new treatments and ultimately cures. The bill was voted out of the Energy and Commerce Committee on a unanimous basis and the next step is a full vote in the House. The Senate is working on related legislation to be released later this year. Stay tuned for more info and action alerts!

NIH/NCI Appropriations Update
One of the big takeaways from Head to the Hill was that Capitol Hill offices, perhaps more so than ever, are saying that increased funding for the NIH is needed and would be good policy. As you know, Congressional funding for the NIH has not kept pace with inflation. Thanks to your advocacy and the combined efforts of many cancer and disease groups including the National Brain Tumor Society, there is a better chance than ever of more robust funding. Please stay tuned for updates and continue to take action on this issue.

Pediatric Brain Tumor Research Funding within the Department of Defense
During the month of May, and thanks to your efforts, 35 members of the House of Representatives signed a letter championed by Representatives McCaul (R-TX), Langevin (D-RI) and Van Hollen (D-MD) urging the House Department of Defense Appropriations Subcommittee to include pediatric brain tumors as an eligible funding topic in the Peer Review Cancer Research Program. We are keeping up the pressure to secure this important funding source. Look out for an update next week and another action request – We will need your voice!

Childhood Cancer Legislation – Coming Soon!
As part of the larger Alliance for Childhood Cancerthe National Brain Tumor Society is working with other pediatric cancer advocacy groups to develop comprehensive childhood cancer legislation that will strengthen federal policy on research, drug development, survivorship and quality of life. The legislation - which already has bi-partisan support of key members of Congress - is still under development. The bill is likely to be finalized in June, and we will send a special email to educate you about the legislation and strategy. We are also excited about joining the Alliance’s upcoming Action Day this month in Washington, DC to ask for Congress' support.

Oral Chemotherapy Parity – Bill introduction coming
As you know, this legislation would help make sure that brain tumor patients with private health insurance plans who have been prescribed oral or self-administered anti-cancer medication such as Temodar do not have to pay more out of pocket per month than if they could received hospital administered medicine (i.e. chemotherapy). The House and Senate versions of the legislation are currently being prepared for re-introduction and we should have bills to advocate for in both bodies in the near future. Stay tuned and continue to engage your representatives on this issue! In the mean time, if you or someone you know has faced high out of pocket costs to access Temodar, even though you have insurance, we would be grateful to better understand your story as further evidence of the need for the legislation. 

Improving Brain Tumor Clinical Trials
National Brain Tumor Society’s Clinical Trial Endpoints Initiative is advancing forward to improve neuro-imaging and the assessment of impact on symptoms and functions in brain tumor clinical trials. Together with Accelerate Brain Cancer Cure, Musella Foundation for Brain Tumor Information and Research, and the Society for Neuro-Oncology - working as the Jumpstarting Brain Tumor Drug Development Coalition – we are pleased that the brain tumor research community has come together and created a new standardized way to collect imaging data in brain tumor clinical trials. Doing this was just what the FDA said would help in their review and ultimately approval of brain tumor drugs. While a bit technical, the effort to standardize and have many hospitals use the same procedures to collect data, is an example of positive systems change that is needed to get new and hopefully more effective medicines to patients. We thank the Brain Tumor Imaging Standardization Steering Committee for their collaborative and productive work to benefit patients.

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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