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National Brain Tumor Society

National Brain Tumor Society Public Policy and Advocacy Update
Vol. 4, No. 7

July 2014
  • August Recess Toolkit
  • Brain Tumor Patient & Caregiver Survey
  • Star Advocates Shine on Capitol Hill
  • Deadliest Cancers Coalition

August Recess Toolkit
Over the past year, you, our brain tumor advocates, have contacted your members of Congress regarding public policies that affect the brain tumor community. You have been very successful in securing the support of your elected officials for increased medical research funding, access to life saving chemotherapy medication, and increased resources for pediatric cancer research and drug development.

From August 2 to September 7, Congress will be on their August recess, when they leave Washington, D.C. and spend time meeting with their constituents in their home districts - your neighborhood! This is a great opportunity to connect with your elected officials, build a relationship, and let them know how they can take action to support brain tumor patients and families in their district.

We have created a toolkit to give you all of the resources you need to meet with your member of Congress during the August recess. Visit our website to learn about the issues and find out how to schedule a meeting or visit the office of your elected officials.

Also, join our Facebook event, "I Took Action in August!", to share your experiences with other advocates, ask questions, and find more resources. 

Questions? Please contact Lainey Titus Samant, Associate Director of Public Policy, at advocacy@braintumor.org or 617 231 6310.

Brain Tumor Patient & Caregiver Survey
Last month, we invited you to participate in the Jumpstarting Brain Tumor Drug Development Coalition’s survey on brain tumor symptoms and clinical trials because patients and caregivers have a right to have their views known about what they want in future treatments being developed and brought to market. Your response has been amazing! However, because every patient experience is unique, we are still actively recruiting for participation in the survey. Please make sure your voice is part of the conversation when we deliver a report to stakeholders including policymakers, drug developers, researchers, and clinicians about the needs and concerns of the brain tumor community.

If you haven’t done so already, we ask that you please complete this brief, anonymous questionnaire. We look forward to hearing from our community.

Star Advocates Shine on Capitol Hill
In June and July, leading brain tumor advocates joined National Brain Tumor Society staff on Capitol Hill to advocate in favor of pediatric cancer drug development and medical research funding. In June, advocates Gina Memmott (Virginia) and Lisa and Daniel Peabody (Maryland) took part in the Alliance for Childhood Cancer Action Days. As we mentioned in last month’s update, one of the goals of the Action Days event was to gain support for the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act, which would facilitate new drug discovery and development in pediatric cancer through the collection of biospecimens and statistical data. If you haven’t seen it yet, read Lisa’s inspiring guest blog post about her experience. 

In early July, advocates Lisa McDermott and Mary Dunn of Maryland joined Louisiana advocate Chantel Rome in attending the One Voice Against Cancer Lobby Day. The group of volunteers joined 24 other organizations to advocate on behalf of medical research funding through the National Institutes of Health (NIH) and the National Cancer Institute (NCI).

Proof of their advocacy can already be seen in the number of co-sponsors who have signed on to support the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act. In addition to the 11 new co-sponsors who signed on to the legislation after our Head to the Hill advocacy event in May, 12 more members of Congress added their names after the Alliance for Childhood Cancer Action Days.

Congratulations to our star advocates for their impressive work!

The Deadliest Cancers Coalition
When working to advance public policy, many voices are stronger than one. With that in mind, the National Brain Tumor Society is proud to partner with the Pancreatic Cancer Action Network and other patient advocacy organizations as part of the Deadliest Cancers Coalition. The Coalition is a collaboration of national non-profit organizations focused on addressing policy issues related to our nation’s most lethal or recalcitrant cancers, defined as those that have five-year relative survival rates below 50%.

The Coalition was instrumental in the recent formation of the Congressional Caucus on the Deadliest Cancers. Chaired by Representatives Leonard Lance (R-NJ), Anna Eshoo (D-CA), Dave Reichert (R-WA), and Henry Waxman (D-CA), the caucus will raise awareness about the deadliest forms of cancer and will advocate for research funding and other measures to increase survival rates for these populations.

There are a number of cancers that still fall below 50% survival, including brain cancer. These cancers are considered the “deadliest” or “recalcitrant” cancers. While there are various types of cancers that fall under this definition, it is worth noting that nearly half of the 585,000 cancer deaths expected in 2014 will be caused by eight site-specific cancers: brain, esophagus, liver, lung, myeloma, ovary, pancreas, and stomach.

Working with other patient advocacy organizations as part of the Deadliest Cancers Caucus, the National Brain Tumor Society will continue advocating for research dollars to be spent on recalcitrant cancers, and working to significantly improve the survival rates of those patients.

For more information on the Deadliest Cancers Caucus, please visit the Coalition’s website here.

As always, thank you for your support. 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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