National Brain Tumor Society - Public Policy and Advocacy Update
Vol. 4, No. 9

  • Advocacy in Action: Childhood Cancer & Medical Research Funding
  • Fiscal Year 2016 Budget Update
  • Congressional Support Builds for Key Legislation
  • Recognizing an Advocacy Leader: Liz Salmi

Advocacy in Action: Childhood Cancer & Research Funding

Last week, National Brain Tumor Society Advocates were in our nation’s capitol participating in a number of activities both in support of Childhood Cancer Awareness Month and advocating for medical research funding. A special thanks to advocates Lisa Peabody, Gina Memmott, Brian Spillman, Mary Dunn, and BethAnn Telford for their efforts on behalf of the brain tumor community this past week, including:

  • Representing the National Brain Tumor Society as part of a group of 300 different health and research organizations from around the country calling for increased funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) during the Rally for Medical Research.
  • Honoring Congressman Michael McCaul (R-Texas) and Congressman Chris Van Hollen (D-Maryland), co-chairs of the Congressional Childhood Cancer Caucus and co-sponsors of the Childhood Cancer STAR Act, at “A Golden Toast for Childhood Cancer.” 
  • Attending the Congressional Childhood Cancer Caucus’s 6th Annual Childhood Cancer Summit, entitled “Progress and Opportunities in the Fight Against Pediatric Cancer.”
  • Participating in the White House’s 2nd annual briefing for advocates on the administration’s efforts to address childhood cancer. 
  • Staffing a table at CureFest for Childhood Cancer on the National Mall, an event that includes over 100 childhood cancer foundations and groups.

To learn more about these advocacy activities, read this post on our blog

Fiscal Year 2016 Budget Update

Congress has failed to pass a comprehensive Fiscal Year 2016 budget, but will likely avoid a government shutdown by passing a continuing resolution before the new budget year begins on October 1st. The continuing resolution, or CR, allows the government to continue operating at Fiscal Year 2015 funding levels. However, that means that the funding increases proposed for NIH and NCI, as well as the inclusion of pediatric brain tumors as an eligible funding topic in the Department of Defense’s Peer Review Cancer Research Program, will not go into effect. 

Congress has created a new deadline of December 11th to come to an agreement on a comprehensive Fiscal Year 2016 budget. National Brain Tumor Society will continue to advocate—and ask you to join with us—for a new budget to be passed in December so that the proposed funding increases will go into effect for Fiscal Year 2016.  

Congressional Support Builds for Key Legislation

Support for our legislative agenda continues to build as Congress returns from their August recess. This month, four new representatives added their support to The Cancer Drug Coverage Parity Act (H.R. 2739, Reps. Lance and Higgins/S.1566, Sens. Kirk and Franken), while fourteen representatives and two senators signed on in support of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (H.R. 3381/Reps. McCaul, Speier, Van Hollen, S. 1883/Sens. Reed and Capito).

Please find a list of new co-sponsors below. If your member of Congress is on the list, please give them a call or send an email thanking them! You can find contact information at this link.

The Cancer Drug Coverage Parity Act new co-sponsors

House:

Eliot Engel (D-NY)

David Jolly (R-FL)

Michael Burgess (R-TX)

Chris Van Hollen (D-MD)

The Childhood Cancer STAR Act new co-sponsors

House:

Dennis Ross (R-FL)

Peter Roskam (R-IL)

Steve Knight (R-CA)

Leonard Lance (R-NJ)

Matt Cartwright (D-PA)

Peter Welch (D-VT)

John Duncan (R-TN)

Ted Deutch (D-FL)

Don Beyer (D-VA)

Scott Peters (R-NJ)

Joe Courtney (D-CT)

John Delaney (D-MD)

Kathleen Rice (D-NY)

Debbie Wasserman Schultz (D-FL)

Senate:

Sheldon Whitehouse (D-RI)

Jeanne Shaheen (D-NH)

Recognizing an Advocacy Leader: Liz Salmi

Since our State Lead Advocate program began over three years ago, we have been fortunate to have a passionate, engaged advocate representing the brain tumor community in California. Brain tumor survivor and founder of “The Liz Army”, Liz Salmi, has worked tirelessly to engage other advocates in her state, build relationships with her members of Congress, and advocate for public policies that impact the brain tumor community. In 2013, Liz was actively involved in the campaign to bring oral chemotherapy parity to California, and played a key role in passage of the law, meeting with legislators and testifying at a committee hearing.  

At the bill hearing, Liz shared her story with lawmakers. “In 2008, at the age of 29, I was diagnosed with a grade II astrocytoma: brain cancer. Five years, two brain surgeries, and several rounds of chemotherapy later, I am a survivor,” said Liz. “Today, I am also a passionate advocate for the brain tumor cause and have experienced firsthand the important advancements we can make by fighting for patients, and funding research, which will help those with brain tumors in the years to come.”

Liz has continued to be a passionate advocate, and we are truly grateful for all of her support and achievements over the past few years. Last month, Liz decided to resign her position as State Lead Advocate and explained her decision in a powerful blog post.

Liz will continue to serve as an advocate, contacting her members of Congress to fight for the brain tumor community. She will also continue to serve on the National Brain Tumor Society’s Medical Advisory Board. 

We fully support Liz in her decision to take a step back and refocus her energy on, as she says in her post, “setting goals for living and doing things that make me feel alive.” Liz has been a great example through her advocacy work, and continues to be an example to other survivors by doing what is best for her at this point in her journey. Thank you, Liz! 

Thanks again to all of you for your support and advocacy!

David F. Arons, JD

Interim Chief Executive Officer

darons@braintumor.org

Lainey Titus Samant

Director of Advocacy and Public Policy

lsamant@braintumor.org

 

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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