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National Brain Tumor Society

 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 National Brain Tumor Society in September and she will focus on working with you our advocates! Lainey was already part of our community, as she was a volunteer and team captain for the Boston brain tumor walk in memory of her father. She has a terrific professional background for our work having served as Chief of Staff to a state legislator in Massachusetts and by serving as a leader in the organizing and governmental affairs team of the Massachusetts Nursing Association. She brings expertise in health care with the specific knowledge of a brain tumor patient’s caregiver. Once Lainey has contact information we will get it to you.

Let’s Recruit Advocates

If you’re already an advocate or volunteer with National Brain Tumor Society now is a great time to let other brain tumor event team members, team captains or other friends and family who support your fight against brain tumors that they are needed too.  Anyone can be a brain tumor advocate in just one minute by taking action - https://secure2.convio.net/bts/site/Advocacy?cmd=display&page=UserAction&id=141

 A great goal is to recruit 2 more advocates by the end of August!  The more advocates the more voices that are speaking up to Congress letting them know that funding for research will mean discoveries that could lead to new brain tumor treatments and even a cure.

Congress and the Latest on NIH Funding

As you know Congress is in recess.  Congress continues to work on passing pieces of a 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 they will have to decide about whether they pass one Labor-Health and Human Services Education appropriations bill or whether they roll that bill into a larger omnibus appropriations bill later in the year. September will be a good time for our advocates to weigh in again.  Also 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.  Again you can take action right now at https://secure2.convio.net/bts/site/Advocacy?cmd=display&page=UserAction&id=141

Co-Sponsor Count: Cancer Drug Coverage Parity Act Oral Chemo Parity
Our collective advocacy is paying off.  The number of co-sponsors in the U.S. House has grown to 58 from 18 since May.  Thank you for your advocacy in June when we last asked you to take 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 it 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 issue and a personal issue because we need more discoveries in order to find effective treatments.   Karen is also the outstanding team captain of the Friends of Ridge, Making a Difference team for the Bay Area California Brain Tumor Walk.  Congratulations to Karen thanks for your advocacy and for your NBTS event team leadership to encourage more people to join the fight and raise resources for our cause.

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

David F. Arons

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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