Amy Comstock Rick, JD

Creative Advocacy Not Limited by Staff or BudgetNINDS Partners Session

September 11, 2013

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• 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”?

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• 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

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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

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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

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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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