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Stroke Advocacy Network Newsletter


Congress to Debate NIH Funding and Therapy Caps

capital dome iconBefore the end of the year, the federal fiscal year will end and the Medicare therapy caps exceptions process will expire. Both of these changes could negatively impact the stroke community.

NIH FundingTake Action Today

The current federal fiscal year ends on Sept. 30 and with no major budget deal in the works, Congress is expected to extend current budget levels into 2013. They can do this by passing what’s known as a continuing resolution. The resolution would mean that funding for the National Institutes of Health (NIH), including the National Institute of Neurological Disorders and Stroke (NINDS), would be preserved in the immediate future, allowing existing research projects to continue but not providing extra funding for new projects. However, there’s a looming issue in Congress that could change this outcome.

In August 2011, Congress passed an agreement that allowed the debt ceiling to rise but also imposed severe spending limits on the federal budget. This law, the Budget Control Act, requires $1.2 trillion in automatic, across-the-board cuts to be made by January 2013, in a process known as sequestration. The way sequestration is currently set up, it would split the cuts equally between non-defense discretionary programs (including the NIH) and defense programs. However, there’s an ongoing debate in Congress about whether or how sequestration will be enforced. Some groups believe the impact to defense spending will be too large and are arguing that non-defense programs should take a larger cut. Others are arguing that sequestration will have too large of an impact on the economy as a whole, and all of the cuts should be abandoned.

It’s unclear which path Congress will take to resolve the nation’s budget issues. Because the impact to stroke-related NIH funding hangs in the balance, National Stroke Association is asking Stroke Advocacy Network members to send a message to Congress asking them to preserve NIH funding, specifically funding for NINDS, as part of whatever solution is crafted. Send this message to your members of Congress today!

Medicare Therapy CapsStay Tuned

Just six months ago, debate was raging over whether to allow certain legislative and tax provisions to expire, including the Medicare therapy caps exceptions process. That process allows Medicare beneficiaries to acquire more therapy than the program caps allow if those services are medically necessary for the patient’s recovery. Unfortunately, the process is set to expire on Dec. 31. If Congress does nothing, 640,000, or 14.5 percent of Medicare beneficiaries, including stroke survivors, could lose access to medically necessary outpatient therapy services in 2013 and beyond. 

It’s likely that Congress will debate this issue, along with a list of other policies and programs that also expire at the end of the year, in November. National Stroke Association is monitoring this issue in the coming weeks and will ask Stroke Advocacy Network members to take appropriate action to help save these critical services for stroke survivors.

Advocate for a Better Recovery

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In general, to advocate means to plead for a specific cause or outcome. As a term, it’s neutral on what exactly you’re arguing for or against. It could be funding for stroke research programs, better access for a loved one to quality care or getting your kids to clean up their room. No matter who you’re trying to influence, the principles behind your approach are the same—and no one knows those principles better than special interests in Washington, D.C.


Issues in Congress

Advocate for Recovery

Stroke Advocate Activities

Recognize Afib

Advocacy Tools

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Briefing Congress

National Stroke Association is participating in a congressional briefing about Afib and stroke in women on Capitol Hill today. Thanks to everyone who encouraged your congressional offices to participate!


World Stroke Congress 2012

Learn more about how the Stroke Advocacy Network will be featured at the 2012 World Stroke Congress.


Free Advocacy Training

Learn how to be an effective stroke advocate. Watch a webinar today!


Healthcare Law
and You

How does the federal healthcare law affect you and your family? Find out at www.HealthcareAndYou.org

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National Stroke Association will share these principles with you in the upcoming Stroke Advocacy Network webinar What Special Interests in Washington, D.C., Can Teach Us About Effective Patient Advocacy. The webinar will be held live—to enable you to ask questions—on Wednesday, Sept. 12, from 4 to 5 p.m. EDT. We’ll look at the 10 most effective and ethical insider strategies that special interest groups use to get what they want. Most important, we’ll show you how to apply these principles to advocate for a better recovery for you or a loved one.

If you want a specific plan of action to identify the who, what, where, when and how of effective patient advocacy, this is the session for you. Register for this free webinar today!

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Stroke Advocates Speak Out in August

Photo of advocates Karen and Emily

Congress recessed in August, and the Stroke Advocacy Network asked its members to visit with their legislators while they were back home. Advocates Karen Dionne and her niece, Emily Certain, did just that. They set up a face to face meeting with U.S. Senator Patty Murray (D-WA) in her Tacoma district office.

Karen is a stroke survivor. She had a hemorrhagic stroke at the age of 37 that changed her life. Her 17-year-old niece, Emily, accompanied her to the meeting. They met with a member of Sen. Murray’s staff, which is not only common, but also just as effective as meeting with the senator herself. Legislators are required to understand the details about a wide range of issues. Because no one person can be an expert in everything, they rely on staff to be their experts in many subjects. Thus, convincing a staff person that your issues are important will influence whether the legislator thinks they are important.

This concept works the same way for you, the advocate. You don’t have to be an expert on stroke-related legislation. You’re an expert on your experience with stroke, and that’s all you need. As Emily stated after her meeting, “I’m no expert on [the bills], but I understand the main points and what the issues mean to the people they affect.” Karen and Emily talked to Sen. Murray’s staff person about Karen’s stroke story, and they continued by talking about two stroke-related issues pending before Congress—Medicare therapy caps and funding for the National Institutes of Health. Karen and Emily learned about these issues before their meeting from the Stroke Advocacy Network’s Issue Summary.

Talking to your legislators face to face is the most effective way to communicate with them, and as Karen and Emily showed, it’s easy! The Stroke Advocacy Network’s District Meeting Tool Kit walks you step by step through setting up a meeting, and it’s available to network members anytime. We’ll also update the Issue Summary regularly, so you’ll always know what stroke-related legislation to talk to your members of Congress about.

Add your voice to Karen’s, Emily’s and the rest of our advocates’, and make the voice of the stroke community even louder!

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Ask Congress to Recognize Afib

Logo for Afib-Stroke Connection

September is National Atrial Fibrillation Awareness Month. Atrial fibrillation, or Afib, is an irregular heartbeat and a common type of heart arrhythmia. It’s important to the stroke community because Afib is a major stroke risk factor, and is responsible for 15 to 20 percent of ischemic strokes (in which blood flow to the brain is blocked). Legislation is pending in Congress that would promote increased awareness, diagnosis and treatment of Afib. Tell your members of Congress to support this legislation and help raise awareness about Afib today. National Stroke Association has a variety of resources about Afib and stroke. Visit the Afib-Stroke Connection for more information.

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Be a More Effective Advocate

cover of Stroke Advocacy Network Toolkit

The Stroke Advocacy Network has a variety of resources that can help you be a more informed and effective advocate for the stroke community. Here are some of the tools and information you can find on our website today.

Advocacy Toolkit—The Advocacy Toolkit provides information and worksheets that help you become an effective advocate. It includes information about identifying your elected officials, ways you can communicate with them and tips on making that communication more effective.

How a Bill Becomes a Law—Find out how an idea for a change in policy becomes an actual law and, more importantly, how you can influence that process (i.e., advocate for the issues you care about).

Legislative Terms—What does it mean when your legislator co-sponsors a bill? What's the difference between a bill and a resolution? What's a filibuster? These questions and more are answered by this list of common terms used in the legislative process.

District Meeting Tool Kit—The District Meeting Tool Kit is a comprehensive resource to help you plan and prepare for meetings with legislators in your community. The tool kit contains information and tips to help you attend a meeting hosted by your legislator, schedule a one-on-one meeting or host a site visit. Choose the level of involvement that fits your desire to make a difference for the stroke community.

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Supported by Allergan, Inc., Boehringer Ingelheim Pharmaceuticals, Bristol-Myers Squibb, Genentech, Inc.,
H. Lundbeck A/S, Janssen Pharmaceutical, Inc. and Pfizer, Inc.