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Stroke Advocacy Network 

JULY 2012

Virtual Lobby Days Success

balloonsThe Stroke Advocacy Network’s second annual Virtual Lobby Days was even more successful than last year! The voice of the stroke community was heard loudly in the halls of Congress as more than 4,400 messages flooded congressional offices during the two-week event.

National Stroke Association would like to thank everyone who participated. You asked your members of Congress to:

  • Repeal the caps on Medicare therapy services and support the extension of the exceptions process until that occurs;
  • Support respite care services;
  • Recognize National Aphasia Awareness Month; and
  • Overcome health disparities for conditions such as stroke.

You carried this message to representatives and senators from all 50 states and the District of Columbia—to almost every congressional office. The result? The Senate passed its own version of House Resolution 674, which designates June 2012 as National Aphasia Awareness Month. The Senate passed Senate Resolution 503 with the help of Senators Tim Johnson (D-SD) and Mark Kirk (R-IL). If you live in South Dakota, contact Senator Johnson to thank him for raising awareness about the challenges of aphasia. If you live in Illinois, contact Senator Kirk to thank him.

Although Virtual Lobby Days has ended, there are always new ways to take action at www.stroke.org/advocate. We encourage you to continue communicating with your legislators and being advocates for the stroke community.

Congressional Briefing Held

Photo of Dr. KoroshetzOn May 15, 2012, National Stroke Association hosted a congressional briefing with the American Stroke Association. Our organizations went to Capitol Hill to educate members of Congress and their staffs about stroke and the importance of the stroke-related medical research conducted by the National Institute of Neurological Disorders and Stroke (NINDS).

NINDS, an institute of the National Institutes of Health (NIH), conducts and supports medical research on brain and nervous system disorders, including stroke. The institute’s research has already significantly advanced stroke treatment in a number of ways, focusing on risk factors, genetics and advances in imaging and rehabilitation, among others issues related to stroke diagnosis, treatment and recovery.

At the briefing, congressional staff and other attendees learned about advances in stroke care that have resulted from NINDS research. Presenters also talked about more recent stroke-related research efforts, their outcomes for patient care and how advancing stroke care affects not only the patient, but also the overall healthcare system. Speakers included Dr. Walter Koroshetz, NINDS Deputy Director; physicians who specialize in neurology and rehabilitation medicine; and a stroke survivor who talked about his recovery from stroke.

The Stroke Advocacy Network has been a strong supporter of both NIH and NINDS funding. In 2011, network members took action and sent messages to members of Congress representing 43 states and the District of Columbia, asking them to support federal funding for NIH and NINDS. With the current budget environment on Capitol Hill, funding for these critical medical research agencies will likely be an issue for the Stroke Advocacy Network in the future.


Virtual Lobby Days

Briefing Congress

Statehouse Activities

Meet Your Legislators

Supreme Court Ruling


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Nominate an Advocate

If you know a stroke advocate who has made a difference, nominate him or her for a Raising Awareness in Stroke Excellence Award (RAISE)! The nomination deadline is July 31.


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Free Advocacy Training

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

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State Legislatures Wrap Up Sessions

graphic of state license platesLegislative bodies in only nine states and the District of Columbia are still in session. The rest have adjourned for the year or didn’t hold a session in 2012. Here’s a recap of some of the stroke-related bills that were debated in state legislatures this session.

Caregiver Resource Centers (California)

Eleven Caregiver Resource Centers (CRCs) in California provide supportive services, such as mental health support, respite, legal advice, support groups and education programs, for caregivers of people with brain injuries. The CRCs serve approximately 12,000 caregivers and maintain waiting lists for various services. This year, funding for CRCs was in jeopardy.

California Governor Edmund Brown’s budget proposal for the 2012-2013 fiscal year eliminated all state funding for CRCs. The issue then moved to the California State Legislature. The Stroke Advocacy Network asked legislators to preserve funding for these critical services in the state budget, and they did.

However, in California the governor has a line item veto, which means he can remove individual budget items before signing the state budget into law. The Stroke Advocacy Network expanded its previous action to the governor’s office, asking the governor not to veto CRC funding from the budget. We’re glad to report that the final state budget signed in to law by Governor Brown preserves current funding levels for CRCs. The Stroke Advocacy Network would like to thank all of our advocates in California who took action on this issue. Your voices were heard!

Improve Stroke Response and Treatment (multiple states)

Several states introduced legislation designed to improve stroke response and treatment—to give stroke patients a better chance at survival and recovery.

Bills in Alabama and Kentucky created a statewide stroke registry to maintain information about strokes that occur throughout the state. This information will enable healthcare professionals to identify a baseline for stroke response and treatment and determine what can be done to improve the quality of care provided to stroke patients. Both states’ governors signed the respective bills into law.

The Pennsylvania General Assembly passed legislation to recognize certified hospitals as primary stroke centers; ensure emergency medical personnel know which facilities have this heightened understanding about stroke; and train emergency medical personnel on the assessment, treatment and transport of stroke patients. The governor signed this bill into law.

National Stroke Association was active on all of these bills—sending letters and messages to legislative leaders and the governors, calling for them to enact this important legislation.

Raising Stroke Awareness (multiple states)

State legislators in several states passed bills or resolutions to raise awareness about stroke in May. The California Assembly and Pennsylvania Senate both designated May 2012 as American Stroke Month. The Florida House approved legislation recognizing May 2012 as the Power to End Stroke Month. In Ohio, both the House and Senate passed a bill to designate May as Pediatric Stroke Awareness Month. The Stroke Advocacy Network posted an action alert calling on its members from these states to thank their representatives, who supported the stroke community in May.


Legislation introduced in the Tennessee General Assembly would have required a special committee to review the state services provided to survivors of traumatic brain injuries. This review was intended to identify the available services, the gaps in those services and how the General Assembly might be able to fill those gaps. Unfortunately, this bill did not become law in 2012.

Watch for more state-level action this year and in early 2013!

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Meet Your Legislators in August

image of August calendarSummer is the perfect time to express your thoughts on stroke- related issues to your legislators. Most legislators are out of session in the summer and working back home in their districts. During these “out of session” or “district work periods,” legislators take time to reconnect with their constituents and learn about what’s going on in their communities. Don’t miss this opportunity to tell your legislators your stroke story and advocate for the entire stroke community.

While this task may seem daunting, the Stroke Advocacy Network will make the process simple with our District Meeting Tool Kit, available in mid-July. The tool kit will provide you with everything you need to know to meet with your legislators and talk to them about stroke-related issues. You’ll learn:

  • What happens at town hall meetings (set up by your legislators);
  • How to set up a one-on-one meeting in a legislator’s local office;
  • How to host your legislator(s) at your support group, hospital, rehabilitation facility or other location; and
  • Stroke-related issues pending before Congress (i.e., what you should talk to them about).

The Stroke Advocacy Network is here to help you maximize the impact of your advocacy efforts. Watch for notices about the District Meeting Tool Kit and plan to take action by meeting with your legislators in August!

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Healthcare Law Upheld By Supreme Court

The Supreme Court recently upheld most of the provisions of the federal healthcare law, also known as the Patient Protection and Affordable Care Act. In doing so, the Court preserved the controversial provision known as the individual mandate, which requires Americans to purchase health insurance by 2014 (subsidies will be available to people who cannot afford coverage). The ruling rejected the administration’s argument that the individual mandate is constitutional because it falls under Congress’ ability to regulate interstate commerce. Instead, the court ruled that the mandate is equivalent to a tax on those individuals who decline to purchase insurance. The court noted that Congress has broad taxing authority; therefore, the mandate is constitutional.

The ruling allows the administration to continue implementing the law. Some of the law’s provisions have already gone into effect and some don’t take effect until 2014. For example, because of this law:

  • Young adults can stay on their parents’ health insurance plan until the age of 26;
  • New health insurance plans are required to establish an effective process for customers to appeal their plan’s coverage decisions;
  • Insurance companies cannot deny payment for covered health services because of errors on applications and other technical mistakes;
  • It’s harder for insurance companies to place dollar limits on the amount of coverage received in a single year;
  • Medicare beneficiaries in the prescription drug “donut hole” are getting a discount on covered drugs until the coverage gap is closed in 2020;
  • Medicare beneficiaries are receiving preventive and screening services at no cost to them;
  • The Community Care Transitions Program is helping Medicare beneficiaries avoid returning to the hospital by connecting them to appropriate transition services; and
  • The Independence at Home Program is providing Medicare beneficiaries with high medical needs with primary care services in their homes.
Additional provisions of the law will take effect in 2014. You can find more information about the healthcare law and find out its impact on you—both now and in the future—at www.HealthCareAndYou.org.

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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.