The AF Stat National Initiative: Bringing Atrial Fibrillation Concerns to the Forefront

In this interview we speak with Eric Prystowsky, MD about the AF Stat™: A Call to Action for Atrial Fibrillation (AF Stat). Dr. Prystowsky is the AF Stat Medical Chair and director of the Clinical Electrophysiology Laboratory at St. Vincent Hospital in Indianapolis. Tell us about AF Stat™: A Call to Action for Atrial Fibrillation. Why was it important to form this national initiative? If you go back in history and look at the problem of atrial fibrillation (AF), you’ll see it is an arrhythmia that was not treated very vigorously for many decades. When I recently researched a 100-year review of atrial fibrillation in the last century for a lecture I gave at the Heart Rhythm Society (HRS), it became apparent to me that although this arrhythmia has been known to exist for a long time, only a small section of the textbooks were dedicated to its therapy. This is understandable, for there was limited therapy available back then, mostly digitalis or coumadin. So in the mid 1990s, I and the other members of the American Heart Association’s (AHA) EP and ECG Committee wrote the first scientific statement on it, in which we discussed the management of AF. The next step, in addition to ongoing research, was when the ACC/AHA/ESC decided to develop full AF guidelines. This was a huge project, and I was fortunate enough to be on that initial committee in 2001 as well as on the 2006 revision committee. We published a lengthy and detailed document on the management of AF. After that was published, I hoped we had really gotten the word out about AF, and that people would read it and begin to apply the management principles we put forth, leading to appropriate care of patients with AF. However, to my great dismay, even after the 2006 rewrite, this was not what happened. Patients were still not getting the appropriate anticoagulation, and many physicians did not understand that ablation was an option or which drugs should be used in certain patients. Making matters worse, incorrect interpretation of the AFFIRM trial led to many physicians assuming that rate control rather than rhythm control was the preferred therapeutic strategy for most patients. I think it all came to a head to me when I saw a patient a couple years ago who was about 17 or 18 years old at the time, and was referred to me in persistent AF. He had gone to the dentist and was having a procedure done when he went into AF. His local doctor decided that he was only minimally symptomatic, so he left him in AF. So here was this teenage kid who is in persistent AF, and nobody had tried to cardiovert him. He had come to see me about four months later because his family wanted a second opinion. I worked with him to get him back to normal rhythm, and it has now been a year and a half, and he has stayed in sinus rhythm with no drugs. But throughout this case, I couldn’t help but wonder, “This is outrageous! Why would a doctor decide to allow a teenager to stay in AF for the rest of his life?” I began looking through literature, and there were published guidelines from several years ago in a general medical journal that concluded rate control was the preferred method of treatment. Mind you, unlike the ACC/AHA/ESC tome on this subject, written by experts in AF, this rather short “guideline” was written by non-experts in AF. Although rate control is a legitimate approach, it’s just not that simple. For someone like me, who has spent nearly 2 decades studying this complex arrhythmia, it was shocking — no pun intended — that a group of doctors would take such a simplistic and frankly naive view of this arrhythmia. People in AF who should be in sinus rhythm often have a marked reduced quality of life, and restoration and maintenance of sinus rhythm is very important to them. But how else can you get the word out? I have frequently lectured and written on the topic, been to major symposiums talking about AF, and even worked on the published international guidelines on the appropriate approach to management of AF. So that is when I was asked to participate as the medical director of a national initiative called AF Stat, which was supported by a grant from sanofi-aventis. We had a preliminary meeting earlier this year, and a larger meeting that included over 20 national organizations was recently held in Washington, DC. What is the group’s first task? What will likely be some other ongoing projects? AF Stat is developing an AF Call to Action paper that delineates the current state of where we think care for AF patients should be and what steps are needed to get it to that point. After our first meeting, we spent a fair amount of time getting everything in order and then invited many different stakeholders. We had a meeting just a few weeks ago in Washington, DC and the HRS, ACC, AHA, as well as nearly 20 other organizations participated in it. We were also quite fortunate that former Senator Bill Frist, MD, joined as a policy advisor. He has been extremely helpful in assisting us with our initiatives. I think if we can get AF awareness on a national agenda, then we can get the right information to doctors and patients. It’s up to each individual doctor/patient relationship to decide what’s best for treatment of AF for that patient, but without the appropriate knowledge base, you run the risk of the wrong decision being made, and no decision is often a wrong decision. Another part of this that ended up being an absolutely wonderful decision was the participation of Jerry West, the former player and general manager for the Los Angeles Lakers, who told his story as a patient with AF. He has had a terrible problem with AF for decades, and gave a stirring and compelling story of what it is like from the patient’s perspective to experience the symptoms of AF and how it changed his life. He said AF was a major reason he quit his involvement in basketball. He is a very intelligent person who understands his illness now and wants to help get the word out. The day of the AF Stat meeting, we also had breakout sessions to go through the four major parts to this AF Call to Action paper. Once the document is finished, then the hard work will begin to accomplish its goals, especially in the area of patient and physician education. Anyone can state the problem of AF — we want to prepare methods to help do something about it, and that is what the Call to Action in my opinion is all about. I believe we may finally get further this time, since it is based on a national level and there are multiple societies involved. It is my hope that we will enhance education of AF and this will result in patients getting appropriate care. Is there anything else you’d like to add? I’m pretty excited about this, because I think it’s a potential breakthrough to get the word out. I know you work with EP Lab Digest, and I know many of us get that monthly, and so you can imagine as a journalist how hard it is to get a story out that really stays in people’s minds. You may write about something once and it’s a one-shot deal, and if someone reads it, great, but if they don’t, then it’s in Never Never Land. You want an effort that is more lasting than a mere “I was interviewed in national media for this.” Big deal! I’ve done this before — I’ve been interviewed many times by the national media for the New York Times, The Wall Street Journal, etc. But those interviews are one-shot deals — they are unfortunately not what gets things accomplished. What get things moving are things that are persistent. I remember thinking how terrific it was going to be after the international AF guidelines were published and physicians modified their approach to AF management. Then I find out that few doctors actually read the guidelines. We on the guideline writing committee really felt that we were doing something noble — unfortunately, this effort did not have what I thought was the intended result. I recently asked some people how campaigns on hypertension, cholesterol and smoking evolved over the years. To my dismay, I found out that these efforts took nearly decades. Unfortunately, neither I nor patients with AF can afford to wait that long. My eyes were opened at that point, and I realized that I’m not going to move this huge area of AF therapy for patients in the right direction in just a year or two — it’s just impossible. So my feeling now is that every step we take is a positive step, especially at the national level, and this one I think is going to be a very positive step. But it can’t stop with just the white paper, or it will turn out like the guidelines. So the key here is the second part — not just the call for action, but the action! I think the more visibility we can get about this, the better we are going to take care of patients. At the initial AF Stat meeting, I asked the people in the room how many had a family member with AF. I have family members with AF as well, so it was remarkable to see the result — about 80 percent of the people in the room raised their hand. That is why when you hear the current numbers of people affected, I will tell you that the number is too low. I promise you the problem is far, far worse than the estimates are for the United States. Every time I go to any meeting that deals with AF and I ask that question, over half the audience raise their hand. It is a very common arrhythmia. I think the reason the numbers are underplayed is because many people have asymptomatic AF. This is not a minor problem for the country — it is by many accounts the most expensive arrhythmia diagnosis for Medicare, and aside from its effect on quality of life for many AF patients, it causes many hospitalizations and increases mortality with stroke and heart failure. So the more publicity, the better!