August 2013 Public Policy and Advocacy Update

• Introducing Lainey Samant, Associate Director of Public Policy 
• Let’s Recruit Advocates
• Congress and the Latest on NIH Funding
• Co-Sponsor Count Cancer Drug Coverage Parity Act
• Advocate of the Month Karen Eagan

Introducing Lainey Samant, Associate Director of Public Policy

I’m very pleased to announce that Lainey Samant will be joining the staff of the National Brain Tumor Society in September to focus on working with each of you - our advocates! Lainey is already part of our community, as a volunteer and team captain (leading a team in memory of her father) for the Boston Brain Tumor Walk. She has a terrific professional background for our work. Having served as the former Chief of Staff to a Massachusetts state legislator and a leader for the governmental affairs team of the Massachusetts Nursing Association, she brings a wealth of expertise in health care, as well as specific knowledge of brain tumors from the caregiver perspective. We will share Lainey's contact information, with all of you shortly.

Let’s Recruit Advocates

If you’re already an advocate or volunteer with the National Brain Tumor Society now is a great time to let others close to the brain tumor community know how they can join the fight against brain tumors. Anyone can become a brain tumor advocate, in just one minute, by taking action - https://secure.braintumor.org/site/Advocacy?cmd=display&page=UserAction&id=141

Let's set a goal to each recruit two (2) more advocates this month! With more advocates, the voice of the brain tumor community becomes stronger - and we can help ensure that Congress knows the importance of research, for the discovery of new treatments and even a cure.

Congress and the Latest on NIH Funding

As you know Congress is in recess, they continue to work on passing pieces of the FY 2014 budget through the appropriations process. To avoid a government shutdown, Congress must pass a budget bill by October 1. The Senate’s appropriations bill would provide for about a 1.1% increase in funding for the National Institutes of Health. The House has not yet passed a bill. When Congress comes back from recess, they will have to decide whether to pass one Labor-Health and Human Services Education appropriations bill or whether they will roll that bill into a larger omnibus appropriations bill later in the year. September will be another good time for our advocates to weigh in. Also the National Brain Tumor Society will participate in another Rally for Medical Research on Capitol Hill with 130 other group hosted by the American Association for Cancer Research on September 18. Ready to help? Take action now https://secure.braintumor.org/site/Advocacy?cmd=display&page=UserAction&id=141

Co-Sponsor Count: Cancer Drug Coverage Parity Act Oral Chemo Parity
Thanks to your efforts, the number of co-sponsors in the U.S. House of Representatives has grown from 18 to 58 since May. Thank you for taking action to urge your Members of Congress to support HR 1801 (the Cancer Drug Coverage Parity Act). The next step in our advocacy is to continue to let your Senators and Representatives know how important it is that the support oral chemotherapy parity.

Advocate of the Month Karen Eagan

Karen Eagan embodies the title of “advocate.” Since losing her beloved husband, Ridge, to a brain tumor in 2011, Karen has focused on letting Congress know how they can do more in the fight against brain tumors. As an advocate, Karen makes it count. Her letters to her Representatives and Senators tell her story, and demonstrate to people in Washington DC that funding for biomedical research at the National Institutes of Health is a local and personal issue for her. Karen is also the outstanding team captain of the Friends of Ridge: Making a Difference team for the Bay Area Brain Tumor Walk. Thank you Karen for your advocacy and event team leadership to encourage more people to join the fight, and raise much-needed resources for the brain tumor community.

Thank you all again for your support. Together, we are making a difference.

David F. Arons

Director of Public Policy