1. Amy Comstock Rick, JD Creative Advocacy Not Limited by Staff or Budget NINDS Partners Session September 11, 2013

2. 2 Dictionary definition - The act of pleading or arguing in favor of something, such as a cause, idea, or policy Most non-profits advocate for more than appropriations for research dollars Medicare therapy caps Essential Health Benefits in the ACA NINDS Initiatives Advocacy value in knowing your Program Director What is “Advocacy”?

3. 3 Use larger organizations Action Alerts Letters to the Editor Newsletter articles Join coalitions American Brain Coalition Research!America National Health Council National Organization for Rare Disorders Advocacy Without Dedicated Staff

4. 4 Current Policy Issues Research funding – NIH $1.5 billion cut to NIH due to sequestration Slight increase for NIH included in Senate FY14 funding bill Short-term Continuing Resolution likely at the end of the FY Many coalitions working on this collectively – Research!America and United for Medical Research advocating with a common message Research funding – Department of Defense Significant increase to DoD medical research efforts 3-fold increase to Peer-Reviewed Medical Research Program in Senate bill

5. 5 Current Policy Issues Food and Drug Administration $8 a year/American to regulate nearly 25% of consumer spending $209 million cut due to sequestration Both the House and Senate FY14 funding bills included increases for the FDA Patient input on burden of disease and risk/benefit framework FDA Safety Over Sequestration Act – protects FDA user fees from sequestration starting in FY14 Medicare Congressional proposals on physician payment reform (Sustainable Growth Rate) Quality measures and value-based modifier Annual extension of the Medicare therapy cap exceptions process “Improvement Standard” lawsuit against HHS – policy manual being rewritten

6. 6 Current Policy Issues Telemedicine Can help people receive the best care – must remove policy barriers VETS Act (H.R. 2001) removes state licensure barriers for health care professionals within the Dept. of Veterans Affairs Affordable Care Act Open enrollment begins October 2013 Coverage in Exchanges begins in January 2014 Many groups focusing on patient education efforts Employer mandate delayed one year, may see other delays

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