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Stroke Advocacy Network Newsletter

APRIL 2013

President Requests NIH Funding Increase, Announces BRAIN Initiative

BRAIN Initiative screenshot

Federal funding for medical research has been on a roller coaster of sorts in 2013. Several deadlines have come and gone that have changed funding levels for agencies such as the National Institutes of Health (NIH), which includes the National Institute of Neurological Disorders and Stroke (NINDS), the nation’s primary stroke research agency. However, the trend toward decreasing our nation’s investment in medical research may be shifting this year, and you can help make that change happen.

In his fiscal year 2014 (FY14) budget, the president requested an increased federal investment in stroke-related medical research, including a new BRAIN Initiative to give scientists a better understanding of the brain. His budget proposal calls for a $31 billion investment in the National Institutes of Health (NIH), which is an increase of approximately $1.5 billion over current funding levels. If approved, the spending increase would bring the NIH to pre-sequestration levels. This includes $1.6 billion for NINDS, which is an increase in that agency’s funding over current levels.

Also included in the president’s budget request is the Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative. A partnership among several organizations including NIH and NINDS, the BRAIN Initiative will focus on mapping the brain, possibly shedding light on the impact of stroke on the brain and revealing ways to improve rehabilitation and treatments following stroke. The president is calling for an investment of $110 million for this transformative research effort. National Stroke Association Chief Executive Officer, Jim Baranaski, was present as an invited guest at the White House as the president announced this bold investment in brain research earlier this month.

It should be noted that the president’s budget is just a proposal. Congress must still act to adopt these policies. Congress’ last action on the budget significantly reduced funding for NIH and NINDS in the current fiscal year (FY13). However, funding for the agencies was cut less than other federal agencies and programs, in part, due to intense public pressure to maintain our nation’s investment in medical research activities. Stroke Advocacy Network members were part of that advocacy effort, sending nearly 7,300 messages to Capitol Hill asking members of Congress to preserve funding for the NIH and NINDS. Your voices were heard!

Once again, your help is needed to make sure Congress invests in medical research activities that lead to advancements in stroke diagnosis, treatment and rehabilitation. They can do that by fully funding the NIH and NINDS next year (FY14) and by funding the BRAIN Initiative. We’ve made it easy for you to contact your members of Congress and tell them to continue investing in new cures and treatments that can reduce the incidence and impact of stroke. Take action today!

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Stroke Awareness Month Resolution Introduced in Congress

Stroke Awareness logo

Congresswoman Joyce Beatty (D-OH) has introduced a resolution that will help raise awareness about stroke risk factors, warning signs and symptoms. H Res 123 would declare May as National Stroke Awareness Month, highlighting the impact stroke has on the nation and encouraging public awareness and improved treatments and for those impacted by stroke.

A stroke survivor herself, Rep. Beatty has a firsthand understanding of the complex issues faced by those who have experienced stroke. “In May, let’s continue to advocate, research, and raise public awareness of this devastating disease. We must diligently work towards long term solutions to prevent, treat, and improve the lives of those combating this disease,” Rep. Beatty said in a press release.


Medical Research Funding

Raise Stroke Awareness

Medicare Therapy Caps

Medicare Policy Change

State Legislation

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Mapping the Brain

National Stroke Association was at the White House as President Obama proposed his bold plan for a “space-race-style” effort to map the human brain. Read more or watch the announcement.


Help Us Raise Stroke Awareness

Learn about three simple actions you can take to raise stroke awareness today!


Free Advocacy Training

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

Donate today

Make Our Voice Louder

Please give today and support our efforts.


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President George H.W. Bush first designated May as National Stroke Awareness Month in 1989. Since that time, National Stroke Association has celebrated the month of May as a time to increase public awareness of stroke and its warning signs and symptoms. Our mission is to reduce the incidence and impact of stroke and raising awareness is an important part of reaching that goal. You can support Rep. Beatty’s efforts to raise awareness about stroke by asking your representative in Congress to co-sponsor H Res 123.

Stroke awareness can save lives and reduce the impact of stroke when it occurs. National Stroke Association thanks Rep. Beatty for speaking out about her experience with stroke and for taking action to raise awareness!

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Ask Congress to Repeal the Medicare Therapy Caps

Stroke Rehabilitation and Recovery NetworkAt the end of this year, Congress will once again make a decision about whether Medicare will provide certain outpatient physical, occupational and speech therapy services to its beneficiaries, including some stroke survivors. Congress creates this annual crisis by extending the Medicare therapy caps “exceptions process” one year at a time, instead of fixing the issue permanently. However, legislation was recently introduced in Congress that would provide that permanent fix by repealing the therapy caps altogether.

The Medicare Access to Rehabilitation Services Act was introduced by Rep. Jim Gerlach (R-PA) in the House and Sen. Benjamin Cardin (D-MD) in the Senate. These bills, HR 713 and S 367, are critical to maintaining stroke survivors’ access to medically necessary outpatient therapy. You can help Rep. Gerlach and Sen. Cardin push these bills through Congress by asking your members of Congress to co-sponsor these bills. Co-sponsoring a bill is a way members of Congress can show their support for the bill before they have an opportunity to vote on it.

Congress originally passed the therapy caps in order to limit the growing cost of the Medicare program. However, they subsequently created an exceptions process to allow patients who have reached the caps to continue receiving outpatient therapy if that therapy was deemed medically necessary. While Congress has renewed the exceptions process every year, recently that decision has been made at the last minute, leaving some stroke survivors unsure about their future access to therapy services. H 713 and S 367 would end this annual renewal by Congress, which would ensure that stroke survivors covered by Medicare maintain access to the medically necessary outpatient therapy they need to recover to their fullest potential.

National Stroke Association would like to thank Rep. Gerlach and Sen. Cardin for their continued support of this issue. They’ve both introduced similar legislation in the past, and we appreciate their continued effort to fight for the stroke community and other Medicare beneficiaries who rely on Medicare for therapy services. If you live in Rep. Gerlach’s Pennsylvania district, please send him a message to thank him for his ongoing support. If you live in Maryland, please contact Sen. Cardin and thank him.

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Medicare Ordered to Approve Some Therapy Services

image of Medicare cardExisting Medicare policy routinely turned patients away from critical rehabilitation therapy services if their improvement had plateaued. A lawsuit was brought against the Medicare program challenging this “improvement standard.” The Centers for Medicare and Medicaid Services (CMS), the agency that operates the Medicare program, lost that lawsuit and has been ordered by a federal judge to change this policy.

Under the settlement agreement ordered by a federal court, Medicare will no longer deny coverage for medically necessary skilled nursing and therapy services, even if the patient’s improvement has plateaued. Effective immediately, coverage for physical, occupational and speech therapy provided in outpatient, home health and nursing home settings will be covered by Medicare. This change applies to services covered under Medicare Part A (hospital), Part B (physician and outpatient) and Medicare Advantage (private Medicare plans). This policy change is also retroactive to Jan. 18, 2011. This means that a denied claim can be appealed through a re-review process so long as it is for services that were received but not paid for by Medicare and the denial was declared final and not appealable after this date.

CMS is required to provide more information on the re-review process in the coming months. While the agency has one year to revise its policies and launch an education campaign to tell healthcare providers about the change, you should be aware that this change is effective now. Healthcare providers are finding out about this policy change in other ways. Thus, if you’ve been denied skilled nursing or therapy services by Medicare in the past, talk to your healthcare provider now about whether this policy could help you get the therapy services you need.

Read a summary of the settlement agreement that ordered Medicare to change this policy, or read frequently asked questions about the agreement.

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Have Your State Legislators Heard from You?

Collage of license platesMany state legislatures across the country are in full swing, and they’re debating bills that impact the stroke community. Because most healthcare policy is created at the state level, the Stroke Advocacy Network created the State Advocacy Action Center to give you the tools and information you need to advocate for the stroke community in your state. By communicating with your state legislators about stroke, you’re educating them about the needs and challenges faced by stroke survivors and their loved ones. This makes a difference!

In fact, many of you have already made a difference in your state. Stroke Advocacy Network members in Idaho and Wyoming contacted their legislators urging them to support legislation to improve response and treatment for stroke patients. Their voices were heard! Bills in both states passed the legislature and are on their way to becoming law.

In Mississippi, Montana and New Mexico, Stroke Advocacy Network members asked their state legislators to bring specialized stroke care to more parts of their states through telemedicine. Telemedicine allows healthcare professionals who are specially trained in stroke care to treat patients in other locations. This brings this specialized care to parts of the state that don’t currently have it. Telemedicine bills have been signed into law in all three of these states!

You too can make a difference! Visit the State Advocacy Action Center today to keep up with what’s happening in your state. You’ll also find ways you can take action to help improve stroke care in your state.

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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.