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National Brain Tumor Society

National Brain Tumor Society Public Policy and Advocacy Update
Vol. 3, No. 12

December 2013

  • Advocacy Year in Review
  • Oral Chemotherapy Bill Introduced in the U.S. Senate
  • Save the Date: Head to the Hill 2014
  • Budget Plan Passes Senate

Advocacy Year in Review
As 2013 draws to a close, the National Brain Tumor Society would like to thank you for being a public policy advocate over the past year. Together with your fellow advocates, you have made the voice of the brain tumor community heard loud and clear in Washington. Here are some statistics from our year of brain tumor advocacy: 

  • In 2013, National Brain Tumor Society advocates sent over 7,000 emails to their members of Congress on legislation affecting the brain tumor community
  • Our advocacy community grew to 14,000 public policy advocates across the country
  • Our public policy advocates were also engaged in social media in 2013, mainly via Facebook. Of the National Brain Tumor Society Facebook posts related to public policy advocacy, our total “reach” of all posts was 225,907, with 7,267 “likes” and 1,626 “shares” of related content 
  • We had the largest presence of brain tumor advocates on Capitol Hill in many years during the 2013 Head to the Hill

We appreciate all of your time and commitment to making a difference for brain tumor patients and their families.

Oral Chemotherapy Parity Bill Introduced in US Senate
Senator Al Franken (D-Minnesota) and Senator Mark Kirk (R-Illinois) recently introduced S.1879, The Cancer Treatment Parity Act, in the United States Senate. This bill would make essential oral chemotherapy treatment more affordable for those suffering from brain tumors and other cancers. Many of you have advocated for similar legislation, sponsored by Representative Brian Higgins (D-New York), in the U.S. House of Representatives this year, and this new Senate bill will allow us to advocate in favor of oral chemotherapy parity in both chambers of Congress and on a bi-partisan basis.

Although oral chemotherapy parity would increase access to lifesaving treatment for all cancer patients, passage of this bill is especially significant for patients with malignant brain tumors as the oral chemotherapy medication temozolomide (brand name Temodar) is the standard of care for many patients. Passage of this bill would hold patients’ out-of-pocket costs for oral chemotherapy to the same more affordable level as intravenous chemotherapy. We look forward to working with you in 2014 to continue moving this important piece of legislation forward.

Save the Date: Head to the Hill 2014
2014 is almost here—save the date for our annual Head to the Hill event on May 5 & 6 in Washington, D.C.! Our 2013 event was inspirational and motivating for those who attended. An advocate who participated in Head to the Hill 2013 had this to say:

"Head to the Hill takes something awful (brain tumor), something that we feel powerless over, and makes us feel like we are making a difference. It empowers us to see what we can do instead of what we can't. Thank you for that!"

We hope you can join us in 2014. We will start with a half-day policy and advocacy training on Monday to give you all the tools you need to effectively lobby your member of Congress, whether this is your first time at the Capitol or you have been advocating for years. On Tuesday, you’ll put those advocacy skills to use during your day of Congressional meetings. Registration will be opening in early 2014. For now, mark your calendars and contact Lainey Titus Samant at LSamant@braintumor.org with any questions.

Budget Plan Passes Senate
In mid-December, the U.S. Senate passed the Ryan-Murray budget deal, and President Obama signed the bill into law last week. Thank you to everyone who responded to our action alert on this issue - your voices were heard!

As we said at the time of the action alert, this bill provides greater levels of government spending in general than under sequestration, which is a good step. However, individual budgets for the specific agencies that matter to the brain tumor community like the FDA and NIH are now subject to the Appropriations process. Thus, the National Brain Tumor Society has signed on to a letter from the One Voice Against Cancer coalition, of which we are a member, asking the House and Senate Appropriations Committees to provide a healthy spending allocation to the subcommittee responsible for setting NIH and FDA budgets. This would be a first step in putting federal cancer research and drug development back on track. Stay tuned in the coming months for more information on the appropriations process.

As the year comes to a close, a sincere thank you again for your support and for taking action with the National Brain Tumor Society in 2013. We look forward to continuing to make a difference with you in 2014.

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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