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Stroke Advocacy Network Newsletter

MARCH 2013

Budget Cuts Hit NIH But Negotiations Continue

Photo of a microscopeStroke-related medical research suffered a setback this month when the funding cuts required by sequestration took effect. The National Institutes of Health (NIH), the government’s primary medical research agency, lost nearly $1.6 billion from its budget. However, future budget deadlines and the negotiations occurring over what to do about them could result in further changes for the NIH budget. Because this issue is still being debated in Congress, we ask that you make your voice heard about these devastating cuts to medical research funding today!

The cuts, known as sequestration, are the result of a deal reached by Congress and President Obama in August 2011 to increase the debt ceiling. They were originally set to go into effect on Jan. 1, 2013. However, in a last-minute deal reached early this year, the cuts were delayed until March 1, 2013. Congress failed to act to prevent these cuts from going into effect on March 1.

Details about how the funding cuts will be implemented are still being worked out. Since sequestration requires the cuts to be across the board, it’s likely that they’ll be spread equally across the 27 institutes that make up the NIH. This strategy would result in a funding cut of $57 million for the National Institute of Neurological Disorders and Stroke (NINDS), the institute that conducts most of the stroke-related research. If this funding cut is not reversed, NINDS will likely have to reduce the number of research grants it awards this year and trim or stop some research currently being conducted. Any reduction in research activities could have a major impact on stroke-related medical discoveries in the future, delaying advances in stroke diagnosis, treatment and rehabilitation.

While it seems like Congress has been arguing over federal spending for some time, negotiations on the budget continue. The government has been operating under a short-term spending bill that expires on March 27, 2013. Thus, Congress and President Obama need to agree on a new spending bill by this deadline to avoid a government shutdown. This deal could include provisions to make these sequestration cuts permanent or to make further cuts to NIH and NINDS.

The debate over funding for NIH and NINDS is not over. It’s more important than ever for the stroke community to make its voice heard about how important stroke-related medical research is to reducing the incidence and impact of stroke. Contact your members of Congress about this issue today.

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Improving Stroke Response and Treatment

Collage of license platesSeveral state legislatures are considering bills that would establish or improve a statewide stroke system of care. This is important because a strong system of care can save lives and reduce the impact of stroke when it occurs.

What is a stroke system of care? A stroke system of care includes 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. Some of these elements are:


NIH Funding Cut

Improving Stroke Care

Support for Stroke Survivors

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  • Designating facilities—Classifying and recognizing healthcare facilities that have additional training and knowledge about stroke so that emergency personnel can transport stroke patients to these facilities when possible;
  • Developing a stroke registry—Establishing a system for measuring, reporting and monitoring stroke care performance through data collection and the creation of a stroke database, or registry, to help facilities improve stroke care in the future; and
  • Stroke training—Educating emergency medical personnel about stroke so patients can be diagnosed more quickly and transported to an appropriate healthcare facility.

How could this improve the lives of stroke patients and survivors? Every minute counts when someone is having a stroke. With early diagnosis and timely treatment, the prognosis and recovery rate from a stroke is vastly improved, so getting a patient to a facility trained to handle stroke can mean the difference between life and death. It can also lead to better recoveries by reducing the impact of stroke and thus, the challenges stroke survivors face in their daily lives.

Are your state legislators talking about stroke systems of care? Legislators from the following states are debating bills to establish or improve a statewide stroke system of care: Hawaii, Idaho, Massachusetts, Minnesota, New Jersey, Oregon, Texas and Wyoming. If you live in one of these states, tell your legislators to support the stroke community by supporting a statewide stroke system of care. Take action today and make a difference for stroke patients across your state!

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Support for Stroke Survivors

State legislators in Hawaii and Indiana proposed legislation that would provide supportive services or mandate insurance coverage of therapy services to people with brain injuries. Because stroke is considered an acquired brain injury, stroke survivors would be included among the beneficiaries of these policy changes.

Image of Hawaiian license plateHawaii’s bill, SB 1227, would’ve required that insurance policies cover certain therapy services critical to post-stroke recovery. This is an important policy change since many stroke survivors don’t currently have access to these types of services. The bill would’ve helped ensure that stroke survivors in Hawaii have access to the care they need to recover to their fullest potential. State Senator Suzanne Chun Oakland (D-13) introduced this bill, which will not make it through the entire legislative process and thus, will not become law in 2013. National Stroke Association would like to thank Sen. Oakland for her efforts on this legislation. We hope she will reintroduce this bill in the next session of the Hawaii State Legislature.

Indiana license plateIndiana’s bill sought to establish a new state office that would support Hoosiers with brain injuries, including stroke survivors, by establishing a statewide network of brain injury and cognitive rehabilitative services. Any resident diagnosed by a physician with a traumatic or acquired brain injury would be eligible for therapy, vocational rehabilitation, respite care and other services offered by the new office. State Senator Vaneta Becker (R-50) introduced the Senate version of this bill, SB 597, and State Representative Tom Saunders (R-54) introduced the House version, HB 1428. Unfortunately, these bills did not make it past a critical deadline and will not make it through the entire legislative process to become law in 2013. National Stroke Association would like to thank Sen. Becker and Rep. Saunders for their efforts on this legislation. We hope they will reintroduce this legislation in the next session of the Indiana General Assembly.

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Members of Congress Are Coming to a District Near You

Mark your calendars March 25 - April 4Members of Congress are slated to be back in their communities from March 25 to April 5 during the “spring district work period.” This work period offers an excellent opportunity for stroke survivors, caregivers, family members and the healthcare professionals who care for them to connect with policymakers in a meaningful way. Your members of Congress make decisions that impact the entire stroke community. They need to hear your stroke story so they understand the challenges of stroke before they vote on stroke-related issues.

One of the best ways to connect with your members of Congress is at a “town hall” meeting. Members of Congress and their staff arrange these community-wide discussions to learn more from their constituents about the issues that impact them directly. It’s one easy way to be heard and to influence the policy debate in Washington, D.C.

How can I find out when and where a town hall meeting will take place?

Finding out when a member of Congress is coming to your area is easy. You can call their district office and ask. The Stroke Advocacy Network can help you find the phone number for the district office nearest to you. You can also sign up for e-newsletters produced and distributed by your members of Congress. They often provide information about upcoming meetings in your community. Do you use social media sites? Your members of Congress probably do too. Follow them on social media outlets such as Facebook and Twitter. They may post their upcoming meeting schedules.

Some members of Congress conduct virtual town hall meetings by telephone or online meetings through sites like Facebook. Joining these discussions is easy and at a minimum, will help you learn more about your legislator’s point of view. They’re also a fun way to engage in the legislative process and advocate for the stroke community from the comfort of your home.

What happens during a town hall meeting?

Although the format varies, typically the member of Congress makes some opening remarks and introduces his or her staff. There may also be local leaders in attendance who wish to make remarks. Then the floor is opened up to comments from the audience—that’s where you come in!

Do I need to know anything before I go?

Before you attend a town hall meeting, take a moment to learn a little about the member of Congress hosting the event. You can learn about bills they’ve introduced and the specifics of their district at www.congress.gov. If you don’t know who represents you, visit our Find Your Legislators webpage to find out.

What should I say to my legislator or their staff?

Just tell your story. Talk to legislators about your day-to-day challenges, such as medical costs, returning to work or school, access to care, caring for a loved one at home or all of the above. Ask them to support legislative initiatives that would help you face and overcome these challenges. You can also read about the issues the Stroke Advocacy Network is following in Congress and talk to your legislators about them. Don’t worry if you don’t know every detail about the issues. If they ask questions you can’t answer, tell them you’ll follow up with them, then contact the Stroke Advocacy Network staff and we’ll help you provide those answers. You can also offer yourself as a resource on stroke-related issues and challenges. Legislators are always eager to find individuals who can serve as a resource on important issues.

What if I don’t want to talk in public?

Even if you find talking in front of people intimidating, you should still attend a town hall meeting. Arriving a couple of minutes early or staying a few minutes late allows you to introduce yourself to the legislator or staff person, mention your interest and let them know you’d like to follow up. There’s no doubt you’ll find them gracious and attentive. Remember, they want to hear from you (and for you to like them)! The purpose of a town hall meeting is for them to hear your views and figure out how they can help.

You have a unique role to play in the policy process and that is to connect the very strange things that happen in Washington, D.C., to the real world. You do this by telling your story—a story that only you can tell. After all, if you’ve been courageous enough to survive a stroke or to care for those who have, you have more than enough courage to face your members of Congress.

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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.