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Urge Congress to Participate in American Stroke Month!

Earlier this month, there was big news for stroke patients on Medicare. On April 1st, President Obama signed the Protecting Access to Medicare Act. Included in the law is a provision that extends the Medicare therapy caps exceptions process for the next 12 months. This means for the next year, stroke survivors on Medicare can rest assured that they will have access to the crucial rehabilitation needed to help in their recovery. Now decisions around therapy won’t be hampered by an arbitrary cap or coverage limits.

Even though this was a victory for stroke patients on Medicare, it is disappointing that these therapy caps were not permanently repealed and that stroke survivors might find their crucial therapy in jeopardy again a year from now.

Congress' failure to repeal the therapy caps shows how important it is that the voices of stroke survivors be heard on Capitol Hill. Luckily, with May being American Stroke Month, this is the perfect time to speak up in support of stroke patients. During those 31 days, we will be promoting awareness about stroke among lawmakers and how together we can make it preventable, treatable, and beatable. 

However, you do not have to wait until then to get your legislators involved!

Send a letter to your member of Congress today and tell them to make American Stroke Month a priority!

Your representative in Congress can participate in three simple ways to highlight the importance of American Stroke Month. They include:

  • Attend the American Stroke Association / National Stroke Association Congressional briefing on May 14th, which will highlight the issues and challenges facing stroke caregivers.

  • Speak on the floor of the House or Senate about the importance of American Stroke Month or highlight the month in a newsletter.

  • Join the Congressional Heart and Stroke Coalition. The Coalition, which is made up of more than 125 Members of the House and Senate, works to raise awareness of the seriousness of cardiovascular diseases and acts as a resource center on heart and stroke issues.

May is the month to focus our legislators on stroke awareness. Urge your legislator to participate in American Stroke Month today!

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April Update from Springfield

Below is a legislation update from Alex Meixner, Government Relations Director for the American Heart Association.

All – we have some good progress to report in Springfield on the systems-of-care front, as Illinois’ annual spring legislative session rolls on.  So without further ado:

First off, our stroke legislation (House Bill 5742) passed the House Human Services Committee on March 26, setting the stage for a vote on the House Floor in the coming weeks!  HB 5742 is the product of a collaborative effort between the AHA/ASA, the IL Critical Access Hospital Network, Stroke Survivors Empowering Each Other, and the IL State Stroke Advisory Committee (the official advisory body to the IL Dept. of Public Health on stroke care matters), and would serve to improve stroke care throughout the state.  Amongst other provisions, the bill would: allow the state to recognize Comprehensive Stroke Centers; bring IL’s Emergent Stroke Ready hospitals in line with the new national Acute Stroke Ready standards, and; institute a modest stroke hospital designation fee to pay for a statewide stroke registry and other stroke-related activities within the IL Dept. of Public Health. 

Yesterday’s successful vote was also the product of weeks negotiations with the IL Hospital Association which ultimately made the bill stronger. While we never want to count our legislative chickens too soon (especially since it’ll need to pass at least four more votes before being sent to the governor), things are looking good so far. I also want to take a moment to applaud the incredible work of our terrific stroke volunteers like Shyam Prabhakaran, Peggy Jones, Bob Biggins, Lisa Bartlett, Liz Kim, Jack Franaszek, and Lesley Cranick (just to name a few), our partner organizations like SSEEO, the Midwest Stroke Action Alliance, and the State Stroke Advisory Committee, and of course our terrific QI staff Kathleen O’Neill and Robin Hamann.

Second, the CPR/AED training in schools legislation (HB 3724) recently passed the House Elementary and Secondary Education Committee. Specifically, HB 3724 would require all IL high-schools to include CPR and AED training in their base curriculum, representing a major step forward for CPR/AED training in Illinois. That said, even (hopefully!) with this bill’s eventual passage, there will still be additional work to do next year to get us our ultimate goal of ensuring that every IL high-school students receives CPR and AED training prior to graduation. 

 At the hearing, two Illinois families spoke out in favor of mandatory CPR training. The first, represented by George, Mary, and Matt Laman, spoke movingly about Lauren Laman (George and Mary’s daughter, Matt’s sister), a high-school senior from St. Charles, IL who went into sudden cardiac arrest during dance team practice in her school gym. While there was an AED in the building, no one knew how to use it, and by the time EMS arrived it was too late.  Next came Harry and Brigette Bell, who told the committee about the night earlier this year when Eric Bell (Harry’s father and Brigette’s husband) went into sudden cardiac arrest at home. Luckily, Harry had received CPR training during his freshman year of high-school, and knew exactly what to do. While his mother called 9-1-1, Harry began chest compressions, which ultimately saved his father’s life. According to Dr. Anand Ramanathan, who treated Eric upon arrival at Elmhurst Memorial Hospital, "the CPR kept him alive until help got there.  The hospital intervention was after the fact, frankly. The main reason he’s alive today is because of the CPR he received at home." Those twin stories made clear for committee members the incredible life-saving value of CPR and AED training (see the attached photo of the Lamans and the Bells along with bill sponsor Rep. Dan Burke). The support of AHA/ASA volunteers, partner organizations like the IL EMS Alliance, IL Heart Rescue, and various IL fire and EMS organizations was crucial to achieving this major step forward. 

Finally, it’s worth noting that the Illinois EMS Alliance which we and so many of our volunteers have worked hard to build over the last 18 months is starting to show some real muscle in the Capitol. In addition to helping us build both political support and (even more importantly) implementation capacity for the CPR/AED training bill, the Alliance and the various EMS stakeholders it represents are making themselves heard on a range of emergency healthcare-related issues in Springfield. To point out just one, earlier this week leaders from the IL EMS Alliance put out a call for EMS agencies and EMS professionals around the state to voice their support for SB 3414, a bill which will help bring IL’s EMS education, training and licensure systems up to national standards (which is crucial because the emergency medical care provided by EMTs is only as good as the education and training they receive). The IL Dept. of Public Health has been trying to pass this bill for several years without success, and it seemed all too likely that it would once again die a quiet death in the Senate Public Health Committee on Tuesday, with only a handful of witness slips filed in support of the bill as of Monday afternoon. Within just a few hours of the appeals from IL EMS Alliance leaders, however, 123 witness slips had been filed in support of the bill (compared to just 3 opposed), most filed on behalf of local EMS systems, hospitals, fire protection districts, and state-wide healthcare associations. Thanks in part to this overwhelming support, the bill passed easily through a committee.  This was a huge show of strength for EMS in Illinois, and a big step forward for the political credibility of the IL EMS Alliance. 

As always, thank you for signing those petition cards, filing those electronic witness slips, and taking those You’re the Cure action alerts!  It really does make a difference!

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Open Streets OKC Features Hands-Only CPR Demonstration

On March 30th, thousands of Oklahoma City residents met at NE 23rd for the inaugural ‘Open Streets OKC’ festival. This event served as an opportunity for attendees to safely walk the street and visit booths promoting an active and healthy community.

 At this event, AHA volunteer Petra Colindres educated participants on the signs of cardiac arrest and how to perform hands-only CPR. She also promoted House Bill 1378, by Rep. Emily Virgin, a bill to ensure all students receive basic instruction in CPR and the purpose of an AED prior to graduating. Many attendees signed post card petitions to their state lawmakers asking for their support this lifesaving legislation.

 

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Relief for stroke patients on Medicare

There is some big news to report from Washington, D.C. Over the past several months, thousands of You’re the Cure advocates like you have sent over 8,500 messages to Capitol Hill urging their lawmakers to stop potentially devastating caps on outpatient therapy for stroke survivors on Medicare. This week Congress listened and took action on these therapy caps!

On Monday, the Senate followed the House by passing the Protecting Access to Medicare Act. Included in this bill, which the President signed into law on Tuesday, is a provision that extends the Medicare therapy caps exceptions process for the next 12 months. This means for the next year, stroke survivors on Medicare can rest assured that they will have access to the crucial rehabilitation needed to help in their recovery. Now decisions around therapy won’t be hampered by an arbitrary cap or coverage limits.

Even though this is a victory for stroke patients on Medicare, we were disappointed that these therapy caps were not permanently repealed. Although this 12 month reprieve is welcomed, it is unfortunate that stroke survivors might find their crucial therapy in jeopardy again a year from now. We will continue fighting for a repeal of the caps and will no doubt need your help in the future. But for the moment, we should all be proud of this accomplishment.

Thank you for the actions you take to ensure the priorities of heart and stroke patients are kept in front of our nation’s decision-makers.

You make a difference.

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Debra Wells

Debra Wells, District of Columbia

Don’t ever let yourself wind up like Debra Wells. Doctors confirm her heart stopped for almost 20 seconds.  Today she’s alive to tell about it, and it was a rough road. 

Before her heart problems, Debra was a successful business woman, working as Vice President of Business Development for a publicly traded company.  She worked hard and played hard.

However, her world changed when she collapsed while on a trip with her husband in Maui. What began as a migraine headache became a stroke.  “In that moment I was completely—and instantly—DEPENDENT,” said Debra.  For two years, she went to physical, speech, and occupational therapy. She was told to “accept her limitations.”  She worked to improve her health and gradually returned to work.

Seven years later, her heart stopped on two more occasions, once it was for 19.5 seconds. As Debra describes it, “For me … it was a head on collision with reality.  No more denial.  In those precious 19 and half seconds that could have taken my life, I realized I could no longer treat my health like a business deal.” Debra has since had two pacemakers implanted. She still has high blood pressure, and does everything she can to control it by exercising regularly, eating healthy, and taking medication. 

Now, nearly 16 years after having a stroke, Debra is making a difference by sharing her story with others as a You’re the Cure advocate. She recently shared her story at the Maryland Million Hearts Symposium and on Washington DC’s CBS TV station WUSA9. (You can watch her WUSA9 interview HERE.)

Debra urges women to take care of themselves and know their risk factors and the important “numbers”—blood pressure, cholesterol, and BMI. She encourages them to accept and respect themselves as working women, mothers, wives, sisters, and daughters.

Debra says, “I am in a way grateful for the 19.5 seconds that almost took my life, because in turn, it taught me to treasure every second I’ve had since, every relationship, [and every] day in my life.”

Visit the American Heart Association’s website to learn more about simple and important changes you can make to improve your heart health.

Have a story of your own to tell?    Enter it HERE (it’s confidential). 

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You helped Protect Heart Health Funds

Earlier this year, we told you about efforts to consolidate many state programs, including those which protect heart disease and stroke. And while consolidation sounds nice, it means the public wouldn't have a good sense of how state funds are being spent on important health programs. Thanks to your help, the final state budget rejects attempts to consolidate and maintains funding for:

• The Tobacco Control Program

• Obesity and Diabetes Prevention funds

• The Healthy Heart Program

• The Childhood Obesity Prevention Program

• The Cardiac Services program

• Emergency Medical Services

And we know funding is critical: Heart disease and stroke are the number one and four killers of New Yorkers. However, we are making progress and with your help can continue to make New York a healthier state!

Thanks for all you do!

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After a stroke, patients need customized palliative care

People recovering from a stroke should have a well-coordinated medical team to personalize care, optimize quality of life and minimize suffering, according to a scientific statement published Monday in the American Heart Association journal Stroke.

The statement is the first in the United States to outline fundamental palliative care for stroke survivors. Palliative care is patient- and family-centered care that improves life by anticipating, preventing and treating suffering.

“The majority of stroke patients need access to some form of palliative medicine,” said Robert Holloway, M.D., M.P.H., lead author of the statement and professor and chairman of the neurology department at the University of Rochester in Rochester in New York. “The stroke team and its members can manage many of the palliative care problems themselves. It encourages patient independence and informed choices.”

Palliative care should be a collaboration between patients, families, a stroke team and various providers, including neurologists, neurosurgeons, primary care providers, nurses and therapists, he said.

Stroke survivors or family members should expect healthcare providers to:

  • Talk about preferences, needs and values as a guide to medical decisions.
  • Discuss what aspects of recovery are most important.
  • Have effective, sensitive discussions about the prognosis and how to deal with physical or mental losses from a stroke. If necessary, they should discuss dying.
  • Help guide through choices about life-sustaining treatment options. Providers should address pros and cons of CPR, ventilators, feeding tubes, surgery, do-not-resuscitate orders, do-not-intubate orders and natural feeding
  • Know the best treatment options for common post-stroke symptoms, including pain, other physical symptoms and psychological problems like depression and anxiety.
  • Engage a palliative care specialist if complex issues arise.
  • Help preserve dignity and maximize comfort throughout the course of a stroke, including during the dying process and when nearing death.

“Stroke is a devastating disease that has received little attention in the area of palliative care so far,” Holloway said.

Nearly 800,000 people have strokes annually. About 130,000 stroke-related deaths occur in America yearly. Up to 30 percent of all survivors are permanently disabled.

To help improve access to palliative care for stroke survivors and their families, the American Heart Association/American Stroke Association also announced its support today for legislation aimed at improving palliative care services for patients with serious illness.  The Palliative Care and Hospice Education and Training Act introduced by Rep. Eliot Engel, D-N.Y., and Sen. Ron Wyden, D-Ore., would establish education centers and support career development in palliative medicine. The Patient Centered Quality Care for Life Act introduced by Rep. Emanuel Cleaver II, D-Mo., and Rep. Spencer Bachus, R-Ala., would expand palliative care-focused research, create a workforce training initiative, and establish a stakeholder summit to address patient-centered care, among other measures.  

For more information about the new scientific statement, check out our official news release

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Senator Kirk: A Stroke Survival Story

In January of 2012, Illinois Senator Mark Kirk suffered a stroke. He recently sat down with Stroke Connection and told his story of survival. See an excerpt below and then follow the link to the full article.

Stroke survivors do not always return to work. Even when they do, it’s safe to say that they are not welcomed back by the Vice President of the United States. Not so for Mark Kirk, the junior Senator from Illinois.

In January 2012 Sen. Kirk had experienced dizziness and felt numbness in his left arm and leg on a Saturday morning and checked himself into a hospital near his home in Chicago. He was given anticoagulant therapy when imaging tests revealed a dissected carotid artery. When his vision blurred and his lift side continued to tingle, he was transferred to Northwestern Memorial Hospital, a primary stroke center, in case surgery was necessary. That was a good call as surgery was required when the dissected artery blocked the blood flow to his brain on January 27th. About a week later, we woke up in the intensive care unit following two surgeries, including a craniotomy, to relieve the swelling in his brain. “I remember thinking that someone was sharing a bed with me, not realizing that is was my own leg,” he said in an interview with Stroke Connection. He vaguely remembered a Super Bowl party the ICU staff had and the smell of the food they brought.

A few days later he was transferred to the Rehabilitation Institute of Chicago. There he dreamed that three angels visited him and asked him to go with them, but “I said no because I knew where I was, on the ninth floor of the RIC. And why I was there – to begin a long, difficult recovery from an ischemic stroke,” he recalled in an interview with the Washington Post.

To read the full article, follow the link to online version of Stroke Connection.
 

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Minnesota Department of Health Minnesota Stroke News Update - Minnesota Stroke System Launch, March 2014

Minnesota Stroke System Newsletter

March 2014

Spring is finally here! You know what that means: walking outside without a winter coat; the singing of birds; and, of course, the launch of the Minnesota Stroke System! After months of preparation, we are ready for implementation.  The first phase of system rollout is the designation of hospitals by the Minnesota Department of Health. Applications will be accepted beginning March 17, 2014.  In this month’s newsletter, we’re going to post answers to questions that we’ve been getting from hospitals as they prepare for designation.

Question Corner

Q: Where do we go to apply?

http:/stroke.mn.gov 

Q: Our hospital is not certified by The Joint Commission as a Primary Stroke Center. Can we apply for Primary Stroke Center designation from the state?

No. Only hospitals that are currently certified by a national accreditation body as Primary Stroke Centers or Comprehensive Stroke Centers may receive those same designations from MDH. In addition, MDH will designate those hospitals at the same TJC or HFAP certification level.

Q: I’m at a certified Primary Stroke Center or Comprehensive Stroke Center. Will I need to submit an application?

Yes. All hospitals must complete an application in order to be recognized by the State of Minnesota stroke system.

Q: For criteria #8 – "A neurosurgery coverage plan, call schedule, and a triage and transportation plan" – does our documentation need to include the actual call schedule? Those schedules change a lot!

No. The intent of this criteria is that the neurosurgical group that you have an agreement with has a clear plan for 24/7 coverage. We do not need to see the actual call schedule. Your documentation needs to demonstrate to MDH simply that you have an agreement and a plan in place with a tertiary care hospital and/or neurosurgical service.

Q: We’re a Primary Stroke Center that is providing neurosurgical services to several hospitals. Can we provide the same letter to them?

Yes. We expect that multiple Acute Stroke Ready Hospitals will have agreements with the same Primary Stroke Center (and the neurosurgery group that services that hospital).The letter just needs to be signed by both your CEO and the CEO at the acute stroke ready hospital.

Q: Criteria #4 states that our ED personnel need to be trained in stroke. Who should be trained?

The intent of this criterion is that staff in your emergency department who will be directly involved in triaging, diagnosing, treating, and monitoring the patient should be keeping up to date with stroke treatment guidelines. We leave who that is to your discretion.

Q: How much training should our ED personnel receive?

The Brain Attack Coalition recommends a minimum of four hours of education on stroke every year for the key staff in the emergency department. We encourage at least four hours per year for your staff, but we will not be collecting information about contact hours from you.

Q: Our emergency department is usually staffed by mid-level providers, not physicians. Will that negate our ability to be designated?

No. We recognize that several hospitals have licensed independent practitioners in lieu of physicians staffing their emergency departments. We expect these providers to be trained to carry out stroke protocols and utilize other resources (e.g., consults with off-site stroke experts) as available to them.

Q: If we have a transfer protocol with a hospital, are we bound to send every patient to that hospital? What if the patient prefers to go elsewhere?

The intent of the transfer agreement is so your hospital has a plan in place to efficiently get the patient out the door. This criterion does not require all of your patients to go only the hospital with which you have a transfer agreement. If the patient wishes to go elsewhere, that’s fine – we just want you to have a process in place to move the patient quickly.

Q: Does our "designated medical director" need to be a physician?

No. He or she can be any professional who will champion and lead the stroke program at your facility. The responsibilities are many – to ensure that your protocols are up to date, staff are adequately trained, data are reviewed, and that you are continually improving your care processes. This role can be played by anyone who has the commitment to actively champion your stroke work.

Q: What is the deadline for applying?

The first deadline is April 1, 2014. However, you can submit your application at any time. We don’t "close" the system to new applications at any time. We’re just going to be issuing designations on a quarterly basis.

Q: Will we have to re-apply every year?

No. Each time you are designated, you’ll be good for a three-year period.

Q: Does getting designated automatically enroll us in the stroke registry?

No. The Minnesota Stroke Registry Program is a separate (but related) quality improvement program. Please contact us for information about joining!

Contact Us:

System/Program Information:

Albert W. Tsai albert.tsai@state.mn.us, 651-201-5413

Stroke Readiness/Performance Improvement:

Megan Hicks megan.hicks@state.mn.us, 651-201-5436

Minnesota Department of Health

Mail:

P.O. Box 64882, St. Paul, MN 55164-0882

Delivery: 85 E.7th

Place, Ste. 220 St. Paul, MN 55101

Online:

http://www.health.state.mn.us/divs/hpcd/chp/cvh/strokesystem/index.html 

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Major Stroke Legislation Introduced in Illinois

Major new stroke legislation has been introduced in both the House and Senate with the goal of keeping stroke care in Illinois moving forward.  Drafted by special committee of stroke professionals from across the state, including several AHA/ASA volunteers, House Bill 5742 and Senate Bill 3520 are progressing towards committee votes soon.  We have been hard at work gathering support for the bills, and supporters now include the official Illinois State Stroke Advisory Committee, the Illinois Dept. of Public Health, the Illinois Critical Access Hospital Network, the Midwest Stroke Action Alliance, and Stroke Survivors Empowering Each Other.  Amongst other provisions, the legislation would allow the state to recognize Comprehensive Stroke Centers and would fund the creation of a much-needed state stroke registry (an important quality improvement tool which will help ensure that stroke care continues to improve in all areas of the state).

If you are interested in helping us pass this life-saving legislation, please contact me at anne.simaytis@heart.org.

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