Entries Tagged as 'Advocacy'

Urgent Request for UK Atrial Fibrillation Patients to Contact NICE About Dronedarone

The Atrial Fibrillation Association in the UK was shocked by the decision by the National Institute for Health and Clinical Excellence (NICE) to deny atrial fibrillation patients access to dronedarone, a medication that has been approved in the U.S. and Europe. AFA is conducting a campaign to make the voices of atrial fibrillation patients heard. If you’re in the UK, and are as shocked as we are by NICE’s decision, please take action today.

Learn more about what you can do to influence NICE’s decision

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Webcast: Sen. Bill Frist MD, Dr. Eric Prystowsky, NBA Hall-of-Famer Jerry West, and others present the AF Stat™ Call to Action for Atrial Fibrillation

On September 16, 2009, the AF StatTM coalition launched two major reports, the AF Stat Call to Action for Atrial Fibrillation and the Avalere Health report Medicare and Atrial Fibrillation: Consequences in Costs and Care. The videos from that webcast are now available for viewing online.

Learn more about AF Stat and access the webcast:
AF StatTM Webcast Video Presents Priorities to Improve Atrial Fibrillation Patient Care

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Action for Stroke Prevention Launches How Can We Avoid a Stroke Crisis? To Expose Risk of a Stroke Crisis in Europe from Atrial Fibrillation

Urgent coordinated action is needed to avoid the thousands of preventable strokes that leave many atrial fibrillation (AF) patients mentally and physically disabled or dead every year. A report, How Can We Avoid a Stroke Crisis?, was launched today in the European Parliament in Brussels by Action for Stroke Prevention, a group of health experts from across Europe.

It proposes measures to tackle stroke in patients with atrial fibrillation (afib), the most common, sustained abnormal heart rhythm and a major cause of stroke. Their proposal, endorsed by 17 leading European medical professional and patient organizations, calls for EU policy makers and Member State governments to act before the increasing frequency of these strokes becomes a major public health crisis.

StopAfib.org is proud to be one of the 17 organizations involved in and endorsing this report.

To learn more, read: Action for Stroke Prevention Launches New Health Report Exposing Imminent Risk of a Stroke Crisis in Europe

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StopAfib.org Salutes UK’s Heart Rhythm Charity for Know Your Pulse Campaign to Highlight Atrial Fibrillation

StopAfib.org salutes our friends at the Arrhythmia Alliance and the Atrial Fibrillation Association, including Founder Trudie Lobban and Executive Committee President Professor John Camm, for their Know Your Pulse campaign to raise awareness of atrial fibrillation in order to encourage diagnosis and treatment of it.

The Know Your Pulse campaign encourages easy and inexpensive pulse checks as a way to identify potential atrial fibrillation. The campaign aims to ensure that pulse checks become routine and is encouraging supporters to sign a government e-petition. The British Heart Foundation (BHF) has just joined into this initiative.

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Dr. Bill Frist Discusses AF Stat™: A Call to Action for Atrial Fibrillation and His New Book — Video

Recently, we at StopAfib.org had the opportunity to talk with The Honorable William H. Frist, MD, Former U.S. Senate Majority Leader, heart and lung transplant surgeon, and AF Stat Policy Advisor about AF Stat™: A Call to Action for Atrial Fibrillation. We also got a “scoop” about his new book, A Heart to Serve. See the video at:

Video Interview: Dr. Bill First Talks About AF Stat™: A Call to Action for Atrial Fibrillation

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AF Stat™ Call to Action for Atrial Fibrillation — Report Aims to Improve Atrial Fibrillation Treatment (Afib)

Healthcare leaders working to improve the health and well-being of people affected by atrial fibrillation, called AF StatTM: A Call to Action for Atrial Fibrillation, have just rolled out two reports, the AF Stat Call to Action for Atrial Fibrillation and Medicare and Atrial Fibrillation: Consequences in Cost and Care. You’ll find the AF Stat press release and those reports at:

Atrial Fibrillation:  Health Leaders Issue Recommendations to Improve Management of this Common, Costly and Misunderstood Cardiovascular Disease

Mellanie True Hills and StopAfib.org have been involved in AF Stat from the very beginning and Mellanie tweeted from the AF Stat webcast this week.

See the webcast tweets and pictures

The next step in AF Stat is to vote on the top priorities on which AF Stat should focus.

Vote for top AF Stat priorities

Read:  Atrial Fibrillation:  Health Leaders Issue Recommendations to Improve Management of this Common, Costly and Misunderstood Cardiovascular Disease

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U.S. Senate Adopts S.Res 262 Designating September 2009 as National Atrial Fibrillation Awareness Month

StopAfib.org is excited to announce that the U.S. Senate adopted, under unanimous consent, S. Res. 262, a resolution designating September 2009 as National Atrial Fibrillation Awareness Month. We especially want to thank Sen. Feingold for his work in getting the resolution approved this month.

We continue to work diligently to move this forward in the House of Representatives. Due to the momentum of the Senate having passed this, please take a moment right now to contact your Representative to ask that he or she sign on as a co-sponsor. It only takes a minute - here are the details for doing so:

ACTION REQUESTED:  Ask Your U.S. Representative to Support Atrial Fibrillation Awareness Month

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You’re Invited to a Webcast for AF Stat™: A Call to Action for Atrial Fibrillation (Afib)

AF StatTM: A Call to Action for Atrial Fibrillation is a collaboration of healthcare leaders and organizations working to improve the health and well-being of people affected by atrial fibrillation. Next Wednesday, AF Stat will be holding a webcast and all afib patients, caregivers, and stakeholders are invited to attend.

This webcast will not cover medical treatment, but will instead focus on the impact of afib and what must be done to address this growing challenge. This event is for anyone who wants to learn more in order to help raise awareness of atrial fibrillation and to advocate for appropriate care. Learn more about AF Stat and the webcast, including how to register, at:

Webcast for AF StatTM: A Call to Action for Atrial Fibrillation (Afib) on September 16, 2009

StopAfib.org has been involved in AF Stat from the very beginning and I’ll be tweeting and blogging from the webcast live site in Washington, DC. Please join us for the webcast.

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Thank you, Pat Robertson, For Answering This Prayer to Raise Awareness During Atrial Fibrillation Month

Pat Robertson, Founder and Chairman of the Christian Broadcasting Network (CBN), recently had the Convergent Procedure for his atrial fibrillation, which in this case was accompanied by removal of his left atrial appendage.

The Convergent Procedure for atrial fibrillation involves radio-frequency surgery followed by a radio-frequency catheter ablation, both of which are done in a special EP Lab outfitted for the dual-purpose of performing surgery and catheter ablation.

Dr. Andy C. Kiser, cardiothoracic surgeon, did Mr. Robertson’s surgery. That was followed immediately by Dr. Mark Landers, electrophysiologist, doing the catheter ablation. The surgery took place August 18 at FirstHealth Moore Regional Hospital in Pinehurst, NC.

I had the distinct pleasure of observing Dr. Kiser and Dr. Landers do the same Convergent Procedure on another person the prior week. While Dr. Kiser doesn’t normally remove the left atrial appendage — I specifically asked him that question — I understand that in this case it was deemed appropriate because Mr. Robertson’s left atrial appendage was enlarged. That required moving him from the EP Lab to a full Operating Suite, and thus doubled the normal procedure time from the usual 4–6 hours to 10 hours.

More about the Convergent Procedure for Atrial Fibrillation (including the Ex-maze)

When I had my minimally-invasive procedure (surgery) for atrial fibrillation four years ago, my left atrial appendage was also removed. Doing so removes the majority of the stroke risk due to atrial fibrillation as the left atrial appendage is the source of at least 90% of the afib-related blood clots that cause stroke.

Mr. Robertson had been suffering from atrial fibrillation for several years. I, too, know personally the toll that atrial fibrillation takes. After surviving blood clots and a near-stroke during my first afib episode, I lived in constant fear that the next one would bring on a deadly stroke. In fact, I felt like I was “a stroke walking around waiting to happen.” Once cured of this irregular heartbeat by surgery, I couldn’t stand on the sidelines and watch others suffer so I started StopAfib.org to help those who were living the nightmare of atrial fibrillation.

Today, September 1, 2009, StopAfib.org celebrates the launch of Atrial Fibrillation Month. This marks our third year of celebrating Afib Month to raise awareness of atrial fibrillation. Afib is an expensive and life-threatening irregular heartbeat that is a common cause of stroke.

I have been pushing like crazy to find ways to raise awareness of afib for Atrial Fibrillation Month so that we can get people diagnosed and treated and thus decrease their risk of afib-related stroke. That is one of our goals, not just in the U.S., but worldwide.

More about Atrial Fibrillation Month

As I focused on how to get the word out even more than last year, my prayers were answered. All of the media attention around Mr. Robertson’s procedure is raising awareness of afib.

Thank you, Mr. Robertson, for bringing attention to atrial fibrillation. Thank you for all the lives that you will save.

For more info:

UPDATED 9-9-09:  Dr. Kiser and Dr. Landers were featured on Pat Robertson’s The 700 Club on Tuesday, September 8 talking about the convergent procedure that they recently did on Mr. Robertson.
Watch the video…

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Blood Clots and Near-Stroke Motivated Survivor to Launch Atrial Fibrillation Month in September to Focus on Arrhythmia That Causes Stroke

This September, StopAfib.org marks the third year of celebrating Atrial Fibrillation Month to raise awareness of atrial fibrillation (afib), an expensive and life-threatening irregular heartbeat that is a common cause of stroke.

StopAfib.org founder, Mellanie True Hills, knows the toll that atrial fibrillation takes on those with it and their families. After surviving blood clots and a near-stroke during her first afib episode, she lived in constant fear of her next, always wondering if a deadly stroke was inevitable. As a patient who was unable to stabilize on Coumadin® (warfarin), a challenging blood thinner that helps avoid strokes, she was frightened that she was “a stroke walking around waiting to happen.”

Once she was cured surgically of this common cardiac arrhythmia, she couldn’t stand on the sidelines and watch others suffer so she started StopAfib.org, for patients by patients. StopAfib.org helps those living the nightmare of atrial fibrillation.

Since afib frequently isn’t diagnosed until after a stroke, or two, and identifying the problem can be a multi-year process, she has a sense of urgency around raising awareness of atrial fibrillation that only an afib survivor can possess.

Learn more about Atrial Fibrillation Month and living with afib at:
September 2009 is Atrial Fibrillation Month: StopAfib.org patient resource raises awareness of expensive and life-threatening irregular heartbeat

Please help us with Afib Month in the following ways:

  • Contact Us to alert us to any special Afib Month events so we can post them to the Atrial Fibrillation Month Events Calendar
  • Tell others about afib and where to learn more
  • If you know a journalist or reporter that can help spread the word, or if you, or someone you know, has a blog that can help, please Contact Us so we can arrange something
  • Bring attention to Atrial Fibrillation Month by bookmarking this story at your favorite bookmarking sites — it’s easy, just by clicking on the “Share” button below you can select your favorite bookmarking sites
  • Let us know what stories you see about afib this month

Stay tuned…there’s more coming. Let’s get some buzz going about atrial fibrillation this month. Thanks for your help in spreading the word about atrial fibrillation and helping to wipe out afib-related strokes.

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