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Stroke Advocacy Network Newsletter


JULY 2014


Virtual Lobby Days 2014 was a Success!

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From June 16-27, our Virtual Lobby Days event was in full swing. During these two weeks, stroke survivors, their family members, caregivers, and healthcare professionals contacted members of Congress to take action on a range of issues that impact the stroke community. You joined us in urging legislators to:

  • Repeal the caps on Medicare outpatient therapy services;
  • Help stroke survivors return to work;
  • Ease the financial burden on caregivers;
  • Support funding for stroke-related medical research;
  • Expand access to specialized stroke care under the Medicare program; and
  • Learn more about stroke and become a stroke advocate on Capitol Hill.

The event was enormously successful, with 1,000 advocates sending over 4,000 messages to their members of Congress. As Congress continues to work until the August recess, we know stroke-related issues and legislation will remain a priority. We thank everyone who participated in the Virtual Lobby Days event, and we urge you to stay involved in advocating on stroke-related issues for the remainder of 2014 and beyond.


Photo of people meetingThe Ultimate Advocacy: Legislator Meetings

Have you sent messages or called your congress-people or state legislators about stroke-related issues? Take the next step and meet with them in person—it’s easy! A meeting allows you to talk about your stroke story and ask your legislators to support stroke-related issues. We’ve provided you with all the tools you need to set those meetings, develop your story and know what stroke-related issues to talk about. Now it’s your turn to take another step in your advocacy journey for stroke. Get started today! 


state licence plate collageStates Are Still Talking About Stroke

While many state legislatures have finished their work for the year, a handful of them are still in session. This means many of you still have time to make a difference for stroke! Legislators in California, Illinois, Massachusetts, Michigan, New Jersey, New York, Ohio and Pennsylvania are currently debating multiple issues that impact the stroke community.

Some of these issues are similar across many states (and the District of Columbia). We’ve given you information on these issues below. There are also other stroke-related issues being debated in each state. Click your state below to find out what legislators are doing for the stroke community and how you can help!

  • Telemedicine services allow healthcare professionals with training in stroke to treat patients in off-site locations, bringing specialized stroke care to areas that don’t currently benefit from those services.
  • Stroke systems of care policies are designed to improve treatment for stroke patients. This is done by decreasing the time it takes to diagnose stroke and transport a stroke patient to an appropriate healthcare facility.
  • Prescription synchronization policies require health insurance plans to allow your healthcare providers to synchronize your medications, which means putting them on the same refill schedule so you don’t have to go to the pharmacy as often.

California | District of Columbia | IllinoisMassachusetts | MichiganNew Jersey | New York | Ohio | Pennsylvania

IN THIS ISSUE

Virtual Lobby Days 2014

Legislator Meetings

States Open for Business

State Wrap Up

Advocacy Tips

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Nominations Open

RAISE Award nominations are being accepted through August 31. Recognize someone you know for raising stroke awareness today!

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Some State Sessions Are Done: What Happened?

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So far in 2014, we’ve tracked and kept you informed on 111 stroke-related bills being considered by state legislatures. You’ve taken action on these bills by contacting your legislators and letting them know how these issues impact you and the stroke community. These actions made a difference, and so far 21 of these pieces of legislation have been signed into law. Thanks to our many Stroke Advocacy Network members who took action and made a difference for stroke in their state this year!

The 21 stroke-related bills that will become new laws this year fit into four categories:

Telemedicine services—Telemedicine services allow healthcare professionals with training in stroke to treat patients in off-site locations, bringing specialized stroke care to areas that don’t currently benefit from those services today. A total of 12 new telemedicine laws have been enacted in nine states so far in 2014.

Stroke systems of care—Stroke systems of care bills include many elements designed to decrease the amount of time it takes to diagnose a stroke patient and transport that patient to an appropriate healthcare facility for treatment. A total of three systems of care bills have been enacted into law in three states so far in 2014.

Prescription synchronization—Prescription synchronization bills let patients with chronic conditions, such as stroke, synchronize their medications with no additional cost-sharing. These bills reduce one of the challenges faced by stroke survivors and their caregivers—having to make multiple trips to the pharmacy to refill prescriptions. A total of three prescription synchronization bills have passed in three different states so far in 2014.

National Stroke Awareness Month—Stroke awareness month resolutions encourage people to help raise awareness about stroke in May, which has been designated as National Stroke Awareness Month. These resolutions urge people to familiarize themselves with the risk factors, warning signs and symptoms of stroke, and call 9-1-1 when stroke occurs. Three of these resolutions have been passed by the state legislatures in three states so far in 2014.

While most state legislatures have adjourned for the year, eight states and the District of Columbia are still in session. These states include California, Illinois, Massachusetts, Michigan, New Jersey, New York, Ohio, and Pennsylvania. There are still over 50 bills pending in these states that still have a chance to become law! This means if you live in one of these states, you still have a chance to make a difference! Find out what your legislators are talking about and how you can help advocate for stroke in 2014!

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Better Advocacy: We Show You How

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Are you frustrated with limited access to medical services? Finding it difficult to return-to-work after a stroke? Exasperated with the financial burdens of surviving stroke? If so, you’ve probably made your views known to your friends and family. But have you told those who can really make a difference?

Every day legislators in Congress and in statehouses across the country make decisions that directly and dramatically impact the health, finances, and day-to-day lives of stroke survivors. Insurance companies decide on what to cover based on state policies. Doctors decide on appropriate treatments based on state policies and federal research. Employers decide on how or whether to make accommodations for survivors based on federal regulations. Unless we speak up—loudly, frequently, and effectively—these decisions will be made without the stroke community’s needs in mind.

The good news is that National Stroke Association provides you with the tools you need to get your message across. Here are three things you can do to be heard in the policy-making process and make a difference for stroke survivors.

Develop Your Story

You play a critical role in the policy debate, which is to connect the very strange things that happen in D.C. and state capitals back to real people. For example, the $5,500 per year family caregivers spend in out-of-pocket expenses and lost wages is just a number. Tying that number to your friend, your family member, your spouse makes it real, and that reality inspires legislative action. Think about the “who, wha,t and why” of your policy ask. Who was or will be harmed or helped by the policy (or not implementing the policy)? What has been or will be the impact on your recovery? Why do you and/or your family need this?

Know What’s Going On—The Stroke Advocacy Network website is a good place to start learning about current policy initiatives at the federal and state level that will impact stroke survivors. Visit our federal and state webpages regularly to keep up with what your members of Congress and state legislators are (or are not) doing about stroke.

Know Something About Your Legislators—Everyone in the U.S. (with limited exceptions) has two senators and one representative in Congress and a state senator and state representative. Every single one of these legislators has their own point of view. Learn how to craft your messages in a way that makes sense to them (your audience) by undertanding what makes them tick.

To learn about them you can visit their websites and read their issue pages. This will give you a sense of the kind of language your legislators use to get their points across. For example, if your legislator expresses fiscal concerns, you can focus your message on Medicare therapy caps on long term cost savings.

Look up bills they’ve introduced at www.congress.gov. If they’ve sponsored legislation on an issue, they really care about it. Their policy interests may, in many cases, be completely unrelated to stroke. Your job is to find out how to connect your interests back to theirs. For example, if they’ve introduced legislation to promote small business, talk about enabling stroke survivors to return-to-work. If they’ve introduced legislation to support veterans, talk about stroke from that perspective. You can’t force them to be interested in your concerns. You can, however, tie your concerns to the policy matters they work on every day.

Follow them on Facebook and Twitter—Social media is a great way to keep track of legislators’ interests as well as to find out when you can connect with them when they’re back home. Like them, share their posts, retweet them, comment on their posts, etc. Any of these actions will garner you attention in the legislator’s office. Just keep it positive. Rants and raves may make you feel better, but they don’t get the job done.

Perhaps the most important item on your advocacy “to do” list is to persist. Every stroke survivor knows something about persistence. Even as you move forward with your recovery there will always be setbacks. The same is true of the policymaking process. And, as with your recovery, the only way to truly make a difference in the long run is to keep fighting the good fight. The Stroke Advocacy Network is your partner in this fight against stroke and for stroke survivors, caregivers, and other members of 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.