The Global Atrial Fibrillation Patient Charter and the Sign Against Stroke in Atrial Fibrillation Campaign

Interview by Jodie Elrod

Interview by Jodie Elrod

In this article, EP Lab Digest® interviews Mellanie True Hills of StopAfib.org about the recent launch of the Global AF Patient Charter and Sign Against Stroke campaign at the World Congress of Cardiology in Dubai. 

Tell us about the creation of the Global Atrial Fibrillation Patient Charter and the Sign Against Stroke in Atrial Fibrillation campaign.

As your readers know, atrial fibrillation is the most common heart rhythm disorder, affecting about 6 million in Europe, 8 million in China, and over 2.6 million in the United States.

Those with afib have a greater risk for serious and debilitating stroke. Organizations concerned about afib, heart rhythm disorders, anticoagulation, and stroke believe that the needs of these patients are the same, whether they’re in China or America, Germany, or Brazil.

Because afib and afib-related strokes affect so many worldwide, a steering committee of six patient organizations — StopAfib.org, the Stroke Alliance for Europe (SAFE), Irish Heart Foundation, Atrial Fibrillation Association, Arrhythmia Alliance, and AntiCoagulation Europe — came together in 2011 to organize the Global Atrial Fibrillation Patient Organization Summit. At that summit last fall, 39 patient organization representatives from 20 countries met to find ways to raise awareness of this growing problem and to develop a charter that would become a statement about how the group plans to help people living with atrial fibrillation. The Global AF Patient Charter was created to bring a worldwide, unified voice to improving the care and treatment of individuals living with afib and afib-related stroke. The Charter is available in 21 languages on the www.signagainststroke.com website.

However, the Global AF Patient Charter is just the first step. The Sign Against Stroke in Atrial Fibrillation campaign was developed to coordinate a global groundswell of support for the Charter’s call to action recommendations. The steering committee and endorsing organizations will use the Charter to put afib care and afib-related stroke prevention at the top of national healthcare agendas.

Why was it important for StopAfib.org to get involved with the AF Charter and campaign? How were you approached to join?

It was a natural fit for us to engage in this effort, since it extends the work we do every day. StopAfib.org has worked on the global level for several years, including collaborating with several of the other steering committee organizations, so it made sense for us to collaborate with the other organizations in steering this effort. The tenets of the Charter align well with our mission and vision to raise awareness of atrial fibrillation, which includes the increased risk of stroke for those living with afib. As someone who has lived with afib every day, and has had blood clots and a close call with a stroke, raising awareness and improving the quality of life for those living with afib is a passion near and dear to my heart.

The Global Atrial Fibrillation Patient Charter and the Sign Against Stroke in Atrial Fibrillation campaign were launched at the World Congress of Cardiology, April 18-21, 2012. You attended this meeting; what was the response like to the Charter and campaign during the meeting?

We launched the Global AF Patient Charter and the Sign Against Stroke in Atrial Fibrillation campaign with a press conference on the first day of the World Congress of Cardiology. We were very honored to have the distinguished Professor Mohamed Sobhy, who is President of the Egyptian Society of Cardiology, to present alongside us at the press conference. He spoke in Arabic about atrial fibrillation and helped ensure that our messages about the Charter resonated in the Arab world. We had one-on-one interviews with the media following the press conference and throughout the week, resulting in a huge amount of media coverage through the Middle East and elsewhere. Several longer lead-time publications will be running stories during the coming weeks as well.

Throughout launch week in Dubai, steering committee members hosted a booth at the Congress to drive awareness of afib and the Charter and to urge attendees to support the effort by signing the Charter. I spent a great deal of time in the booth talking with visitors about the campaign and our goals.

There was much excitement and passion for this mission and Charter at the Congress, and it was really thrilling to see a coalescing of support for the Charter around the globe as well. Concurrent with the launch in Dubai, steering committee member organizations were also busy promoting the campaign around the globe through press releases, news stories, and social media. We were energized by all of the people signing on to endorse the Charter from most countries around the globe, because it truly makes a difference and helps raise awareness of this condition that destroys so many lives.

We couldn’t have been happier with the level of interest and commitment during the launch in Dubai — people, one after the other, stopped and took time to sign the Charter. Many Congress attendees were so excited about the mission that they would return to the booth with four or five colleagues to sign the Charter. Even though we had two giant iPads as well as regular iPads available, we still had lines of people waiting to sign the Charter. It was an attention-grabbing booth. Crowds would gather around to watch people sign the Charter on the giant iPad. After signing the Charter online with the iPads, their name, city, country, and flag would appear on the screen as the latest signee (as in Figure 4), and many would take pictures to then go show their friends and colleagues. The excitement and passion the attendees shared for this mission was truly amazing. Particularly gratifying was the number of booth attendees who also were asking their organizations to endorse the Charter.

At the booth, we also provided visitors with printed copies of the Charter, available in English and Arabic, and showed them where they could download copies of the Charter in 21 languages to share with colleagues, patients, family, and friends back home.

How many medical and patient organizations have joined the campaign thus far? Do you expect more to join in the future?

As of the launch, 70 patient organizations and medical societies from 39 countries had endorsed the campaign, including the World Heart Federation and the Heart Rhythm Society. The full list of organizations is available on the website, www.signagainststroke.com.

We are actively seeking more endorsements and look forward to more patient organizations and medical societies signing on. As we spread the word about the Charter and inspire action, more and more groups from around the world will join forces with us to raise awareness about this widely under-diagnosed and under-treated condition.

Discuss the critical recommendations of the Global AF Patient Charter and its supporting campaign, Sign Against Stroke in Atrial Fibrillation.

The Global AF Patient Charter focuses on five critical recommendations (see sidebar) that encompass raising awareness of afib and strokes as well as pulse checks for earlier diagnosis, making afib care and stroke prevention a national priority, implementing widely-accepted guidelines, enhancing education and best practices around diagnosing and treating afib, and ensuring that those living with afib have access to appropriate care at the earliest possible time.

We believe that if countries take action on these five recommendations, both the economic and social burdens of afib and afib-related stroke can be reduced in meaningful ways, translating into great benefits for patients and healthcare systems. Gathering signatures to demonstrate support of an issue is a tried-and-true way of compelling policy makers, national governments, and healthcare professionals to take action. This is the central focus of the Sign Against Stroke in Atrial Fibrillation campaign, and will be used by endorsing organizations to gain attention to this problem within their own countries.

How many have signed the Sign Against Stroke in Atrial Fibrillation campaign thus far? When do you expect to reach the goal of 1.7 million signatures?

As of now, over 4,000 people around the globe have signed the Charter. We hope those who have already signed will share the website with their friends, families, and colleagues and encourage them to learn more about afib and show their support by signing. Many of the endorsing organizations are planning events and media promoting the Charter and campaign. The steering committee will also have a booth at major medical meetings, and we hope to meet many of your readers when they come to sign the Charter.

The goal of Sign Against Stroke in Atrial Fibrillation is to gather 1.7 million signatures in support of the Charter — one for each of the estimated number of grandparents, mothers, fathers, aunts and uncles killed or disabled by afib-related strokes every year. These signatures will be used as a tool to inspire healthcare decision makers in countries across the world to take action. Demonstrating strong support behind the Charter recommendations will help put afib and afib-related stroke prevention at the forefront of national health agendas. The 1.7 million figure is a long-term goal that we hope to reach as we continue to raise awareness of the Charter and campaign.

Please take just a couple of minutes to go to the website to sign the Charter and to circulate it among colleagues, patients, family, and friends, asking them to sign it as well.

Did related events take place at the recent Heart Rhythm sessions in Boston?

The Sign Against Stroke in Atrial Fibrillation booth was at the Heart Rhythm 2012 conference; attendees could visit to sign the Charter and learn more about the campaign. With the Heart Rhythm Society as one of our endorsers, we hope that the campaign presence at the conference generated as much enthusiasm as at the Dubai meeting.

Is there anything else you’d like to add?

On behalf of the steering committee and our endorsing organization partners, we hope anyone interested in improving the care and treatment of those with afib and at risk for afib-related stroke will take a moment to join us in this very simple but effective way by signing on to the Charter at www.signagainststroke.com.

The steering committee is also grateful to Bayer Pharma AG for supporting our efforts to independently create the Global AF Patient Charter, by funding a secretariat to coordinate our efforts and have a booth at major medical meetings. Bayer also supported the Charter website and reviewed the steering committee’s site content to ensure accuracy and Code compliance. Thank you for the opportunity to talk about this important effort.

For more information, please visit: www.signagainststroke.com