February 2013 Public Policy Update: Sequestration and What You Can Do

• Sequestration and What It Means for the Brain Tumor Community
• Register Today for Head to the Hill 2013
• Advocate of the Month: Patti Gauvin

As always, you can view the full PPA update on our website.

Sequestration and What It Means for the Brain Tumor Community

As we all know by now, Congress and the President have been stuck in gridlock over the federal budget and how to reduce the nation’s debt for months. The next big moment in this debate will be on March 1 - when a policy calling for deep, across-the-board cuts to government programs, known as sequestration, goes into effect.  

Here’s why we’re so concerned. After several years of increases in brain tumor research grant funding by the National Institutes of Health (NIH), we now expect that sequestration could trigger deep cuts, and consequentially, setbacks to brain tumor research if it goes into effect.  NIH Director Francis Collins has said that potential cuts could be “devastating.” The cuts won’t just hurt basic research, they will also result in major cuts to the Food & Drug Administration’s (FDA) capacity to review and approve potential new therapies, including those in brain tumors.

It couldn’t be a worse time for cuts to brain tumor research.  Ironically, just two years ago, thanks to Congress’ investment in a project called The Cancer Genome Atlas, four (4) new subtypes of glioblastoma were identified, a breakthrough that is leading to the testing of new therapeutic approaches.  Many of the pediatric brain tumor clinical trials that offer the only hope against deadly tumor types, including diffuse intrinsic pontine glioma (DIPG) and pylocitic astrocytoma, are funded by the National Cancer Institute (NCI), which would be hit hard by sequestration.

So what can we do? Here’s the good news we can (and should) let our elected officials know that the budget brinksmanship should not result in cuts to brain tumor research.  The fight for a cure is too important to fail or falter as a result of sequestration.  We have all the tools you need to raise your voices loud and often between now and March 1 when sequestration begins. If we do go over the so-called fiscal cliff, there will be time for to pass a law to stop cuts from being implemented. In this case, we will need a sustained effort for the next several weeks.

Here’s how you can help:

1. Read our questions and answers sheet about sequestration. 
2. Contact your elected officials now. It only takes one minute to send a letter. 
3. Join thousands of fellow brain tumor community members on Monday, February 25 for a national brain tumor call-in day to Congress. Visit this page (which will go live that morning), will provide you with all the information you need, including the numbers to call, the script to use, and a report-back form. Let’s make some noise!
4. Finally, help us recruit others to become advocates so they too can protect brain tumor research and fight for their loved ones. Just ask them to sign up here to receive updates and information on how they can help.

Our message to Congress is clear: Stop sequestration, and replace it with policy to protect and prioritize the programs and initiatives of the NIH and FDA. The brain tumor community needs cures, not cuts.

Register Today for Head to the Hill 2013

National Brain Tumor Society invites you to join us on May 6-7 for Head to the Hill, our annual Washington, DC-based advocacy event. This two-day event includes a half-day of training on key public policy issues, and full day of meetings on Capitol Hill to speak with Congressional leaders about how they can help strengthen research, advance therapies, and improve health care. You will also have the opportunity to interact with other brain tumor advocates and National Brain Tumor Society staff. No previous experience is necessary. All you need to participate is a passion for fighting brain tumors and the most powerful tool - your voice. 

Register Today - and make a difference for the 688,000 Americans living with a brain tumor. 

Advocate of the Month: Patti Gauvin 

This month, we recognize Patti Gauvin, Florida Lead Advocate, as our February Advocate of the Month. Patti joined Head to the Hill last year along with her husband, Ron, who is a brain tumor survivor.  She has been doing incredible work to spread the word and advocate for policies that strengthen research, advance therapies, and improve health care for brain tumor patients ever since.

Patti has been educating people about the brain tumor community and spreading awareness by tell her story for years. Her book, Hope Through the Eyes of Love: Life and Marriage in the Face of a Brain Tumor, tells their incredible story of the past twenty years since Ron’s diagnosis. In addition to her book, Patti uses every opportunity she can to tell her story, encourage others to do the same, and provide support. She is an active participant in #BrainTumorThursday discussions on Twitter and leads the Facebook community BrainCancerFamily.

As a Lead Advocate, she uses all of that energy and passion to fight back through public policy and to recruit others to join her. While attending the 2011 Boston Brain Tumor Walk, Patti made sure that every person she came in contact with left with instructions on how to sign up to be an advocate. Recently, a story ran on a local Florida news channel about a patient who was having trouble affording her Temodar due to her extremely high copayments. Patti used this as an opportunity to write a Letter to the Editor and educate the readers about the oral chemotherapy parity legislation brain tumor advocates have been working to pass in order to ensure affordable access to this necessary treatment.

Patti, thank you for all you are doing! You are making a real difference. 

Thank you all for your continued advocacy. 

David F. Arons, JD
Director of Public Policy
darons@braintumor.org