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National Brain Tumor Society

National Brain Tumor Society Public Policy and Advocacy Update
Vol. 4, No. 2

February 2014

  • Join us for Head to the Hill 2014!
  • Fiscal Year 2015 Federal Budget Update
  • Jumpstarting Brain Tumor Drug Development
  • National Brain Tumor Society Supports Pediatric Cancer Legislation
  • Oral Chemotherapy Parity Legislative Update

Head to the Hill 2014
Earlier this week, you received an official email invitation to Head to the Hill 2014 on May 5 and 6. This annual Washington, D.C.-based advocacy event has become a powerful vehicle to ensure the voice of the brain tumor community is being heard on Capitol Hill. This year, we will once again ask Congress to support oral chemotherapy parity and healthy funding for government agencies that are important to brain tumor research and drug development, like the National Institutes of Health (NIH) and U.S. Food and Drug Administration (FDA). This year, we will also be advocating for pediatric cancer research and drug development. We hope you will be able to share this experience with us!

Register today and make a difference for the nearly 700,000 Americans living with a brain tumor. For more information, please visit our dedicated Head to the Hill webpage. Any further questions, please contact Lainey Titus Samant, Associate Director of Public Policy, at advocacy@braintumor.org.

Fiscal Year 2015 Budget Update
Brain tumor advocates joined the collective voices of patient advocates from across the nation in support of a Fiscal Year 2014 spending bill that restored some of the harmful cuts made to the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA) through sequestration. The bill was signed in to law by the President in January and will fund the government through September 30, 2014, when Fiscal Year 2014 ends.

Currently, the United States Congress is beginning the appropriations process for Fiscal Year 2015, which will begin on October 1, 2014. Funding for the NIH and FDA is appropriated by the Labor Health & Human Services appropriations subcommittee, known as Labor-HHS. The deadline for members of Congress to submit their appropriations requests to the Labor-HHS subcommittee is April 4.

As part of the One Voice Against Cancer (OVAC) coalition, the National Brain Tumor Society will be on Capitol Hill on March 12th to ask members of Congress to submit the funding requests of $32 billion for the National Institutes of Health (NIH), which would include $5.26 billion for the National Cancer Institute (NCI). This would be an increase of approximately $2 billion in the NIH budget, which would allow the funding of additional vital medical research and drug development so that new treatments can be discovered. Look for action alerts in the coming weeks that will enable you to advocate to your members of Congress, prior to the April 4th deadline, in support of increased funding for NIH in the FY15 budget.

Jumpstarting Brain Tumor Drug Development
As part of the National Brain Tumor Society's Clinical Trial Endpoints Initiative, we hosted the first of two Brain Tumor Clinical Trial Endpoints Workshops with our partners in the Jumpstarting Brain Tumor Drug Development Coalition. The workshop included significant participation from government agencies like the FDA and NCI, in addition to medical/academic researchers and Industry executives. It resulted in a new action plan to improve brain tumor imaging for drug development. Click here to read a press release about this workshop.

National Brain Tumor Society Supports Pediatric Cancer Legislation
National Brain Tumor Society is committed to fighting pediatric brain tumors. As part of this effort, we are actively supporting the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act. If passed into law, this bill would expand opportunities for pediatric cancer research, improve the tracking of incidence rates for childhood, adolescent and young adult cancers, and identify the barriers to pediatric cancer drug development.

More than 4,000 children are diagnosed with a brain tumor each year. Malignant brain tumors are the second most common form of childhood cancer, and are the leading cause of cancer-related death for children under 10 years old. Interested in advocating with Congress in support of pediatric cancer legislation? Join us at Head to the Hill, or contact Lainey Titus Samant, Associate Director of Public Policy, at advocacy@braintumor.org.

Oral Chemotherapy Parity
In January, the National Brain Tumor Society joined with fellow Patient Equal Access Coalition (PEAC) members to build a 2014 strategy for oral chemotherapy parity. The goal of the strategy is to continue gaining support in the House of Representatives for HR 1801, while growing support for the newly introduced Senate bill (S. 1879), introduced by Senator Mark Kirk (R-IL) and Senator Al Franken (D-MN) in December, 2013. Brain tumor advocates will play a key role in this strategy. We will call on advocates at various points in this campaign to weigh in with your members of Congress. In the meantime, for more information on oral chemotherapy parity, please visit our website.

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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