National Brain Tumor Society - Public Policy and Advocacy Update

2016: A Year of Advocacy Successes!

In 2016, you and your fellow advocates continued your unwavering commitment to improving the lives of brain tumor patients through public policy advocacy. Your calls, letters, meetings and posts on social media made an impact, and we are happy to share some of your successes from the past year as we look forward to creating more impact together in 2017.


Here are some 2016 brain tumor advocacy highlights:

  • Our advocates sent more than 5,500 messages regarding our legislative agenda to their members of Congress.
  • Almost 2,000 advocates took action this year, either by calling or emailing their members of Congress.
  • In its sixth year, Head to the Hill set a record attendance with over 300 advocates from 39 states attending more than 220 meetings with members of Congress or their staff. 
  • National Brain Tumor Society CEO David Arons was a member of the newly formed Cancer Moonshot Initiative Blue Ribbon Panel and worked with Vice President Biden's office to discuss ways to make an impact in the fight against brain tumors. 
  • Our staff had over 110 meetings on Capitol Hill with members of Congress and their staff, spreading awareness of the unique challenges associated with brain tumor treatment and research, and the need for policy change for the brain tumor community. 

And your advocacy paid off:

  • Support grew for the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act, which passed the U.S. House of Representatives and will move forward in the Senate in early 2017.
  • The 21st Century Cures Act, which will improve policies related to brain tumor research, has been passed by Congress and signed into law by President Obama. This legislation included funding for the National Institutes of Health and the Cancer Moonshot Initiative.
  • Thanks to your advocacy, there is language in the pending fiscal year 2017 federal budget that makes pediatric brain tumors an eligible topic for funding in the Department of Defense's (DOD) Congressionally Directed Medical Research Program's Peer Review Cancer Research Program for a second year in a row. Plus, two of your fellow brain tumor advocates have served on the peer review committee as voices for the patient advocacy community.
  • Volunteers with the National Brain Tumor Society attended a hearing hosted by the FDA and successfully advocated on policy related to patients with DIPG (Diffuse Intrinsic Pontine Glioma) brain tumors.
  • The number of co-sponsors of the Cancer Drug Coverage Parity Act (oral chemotherapy parity bill) increased to one hundred twenty-three in the House and twenty-one in the senate on a bi-partisan basis. 

Thank you again for your advocacy in 2016. I hope you are as proud of your achievements this year as we are. You are truly the most important part of our public policy and advocacy program, and we know that you will continue to make the voice of the brain tumor community heard on Capitol Hill in 2017. Together, we are making a difference in the fight against brain tumors. 

David F. Arons, JD

Chief Executive Officer

Kacey Troy

Research and Advocacy Manager

Lisa Peabody
Public Policy Associate


***Head to the Hill 2017 will take place on May 8 & 9, 2017! Save the date and stay tuned for more information in the coming months.***


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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