What are the REAL Costs of Living with Atrial Fibrillation?

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If you prefer to read about my conversation with Dr. Steve Ryan on this topic, the full unedited raw transcript is provided below.

Here are the highlights of our conversation:

There are two costs of living with atrial fibrillation: financial and quality of life costs. Both are very high!

Financial Costs

• Afib costs the United States about 6 billion each year.
• Medical costs for people who have afib are about $8,705 higher per year than per people who do not have afib.
• There are 750,000 hospitalizations each year because of afib.

Quality of Life Costs

• Atrial fibrillation is a disease, it’s a progressive disease that tends to get worse over time and wreck your life and wreck your heart.
• Frequent afib episodes enlarge and weaken your heart and can lead to other heart problems, including heart failure, and other cardiovascular problems.
• Afib is a progressive disease that eventually remodels your heart (changes how your heart works).
• Ongoing afib produces fibrosis, or permanent scarring of the heart.
• You’re losing 15% to 30% of your normal pumping ability of your heart when you’re in afib.
• Frequent or prolonged episodes of atrial fibrillation tend to stretch and dilate your left atrium. If it goes too far you lose contractual ability of your left atrium to function at all.
• If you leave someone in afib, the afib attacks tend to become longer and more frequent.
• One study showed that half the people who managed their afib with rate control drugs went into long-standing persistent afib within a year.
• Some of the other things that afib does is potentially cause dementia because you’re not getting enough blood to your brain and to the rest of your body.
• The goal should be to stop an afib episode NOT just control an episode (i.e. slow the heart rate while in afib).
• The problem with today’s anti-arrhythmic drugs is that they don’t work or if they do work for a time they lose their effectiveness eventually, or they have bad side effects.
• If you have persistent or long-standing persistent afib and have been told there is nothing that can be done other than take drugs to manage it, DON’T BUY IT! You have options!
• Castle AF Trial reveals ablations on heart failure patients resulted in a 47% reduction in death rates. In the catheter ablation group, 60% improved their ejection fraction by more than 35%! And after 5 years, 60% of the ablation group were in normal sinus rhythm compared to 22% receiving normal drug therapy.
• The goal for every afib patient should be to end their afib and not just manage it or tolerate it!

BEGIN TRANSCRIPT

Travis Van Slooten: I invited Dr. Steve Ryan back again for today’s episode of the afib podcast. Steve is a former patient who was cured of his back in April 1998 via catheter ablation. He is the publisher of one of the most popular websites, a-fib.com and he is the author of the best-selling book, Beat Your Afib: The Essential Guide to Finding Your Cure.

So in this episode Steve and I discussed a topic that we are both extremely passionate about. And that topic being “The Real Cost of Living with Atrial Fibrillation,” and why it’s imperative to seek a cure for your afib, rather than just living with your afib. The financial and quality of life cost of living with afib are absolutely staggering. And so in this episode we discussed those costs, and again we really emphasize why it’s so important to find a cure and not just settle with a life of afib. So with that, let’s roll the tape.

All right, Steve, our topic today is really near and dear to my heart – no pun intended – and I know it’s very near and dear to you as well. And I know when I’ve spoken with you in the past you and I are both very passionate about this topic, and it’s the topic of the real cost of living with atrial fibrillation. And of course, when we talked about the cost of living with afib — well, first of all, I should say when we say we’re living with afib, for most people that means they’re just tolerating it, they’re basically managing it as best as they can instead of trying to seek a cure. But the cost of doing that of just kind of tolerating your a favor rather than trying to see a cure, there are really two big cost there. There is the financial cost, but probably just as important, if not more important, is a health or quality of life cost.

Dr. Steve Ryan: Absolutely, yes.

Travis Van Slooten: Yeah, absolutely. So let’s talk about the financial costs, Steve. You found some interesting stats on the CDC website. Can you talk about these financial costs?

Dr. Steve Ryan: Yes, Travis. The CDC has some very interesting figures. Afib costs the United States about 6 billion each year. Medical costs for people who have afib are about $8,000 – and I’m reading from the CDC statement here – are about $8,705 higher per year than per people who do not have afib. Now who has $8,700 to throw around every year trying to cope with the…

Travis Van Slooten: Yeah, and unfortunately with the health care plans that are out there today a lot of people that won’t even meet their deductibles, so that usually probably out-of-pocket cost. Yeah, that’s on fortunate.

Dr. Steve Ryan: Yeah, it’s medication, it’s doctor visits, it’s ambulance, it’s trips to the ER it’s you know, all kinds of stuff goes into that that run up the bills cost. The CDC says there are 750,000 hospitalizations each year because of afib, and afib contributes to an estimated 130,000 deaths each year. The death rate from afib has a primary or a contributing cause of death as been rising for more than two decades. Now that’s because the more and more people are getting afib because it’s a condition of aging, but those are really staggering figures.

Travis Van Slooten: Yeah, tell me about it. And I can attest to those because until I seek my cure which was an ablation, those figures are actually pretty accurate. I mean I remember specifically one year I spent easily $8,000. My trip to the ER was $4,000 alone. Because it was my first episode and I was in an ambulance so the ambulance ride alone was like $1,500. I mean it was crazy, but the financial costs are unbelievable.

But what’s even scarier than the financial cost – and those are scary – is again the health and quality of life cost. And Steve this is where you and I really are passionate about this because I get — I cannot tell you Steve how many emails I get from people saying, “Well, my doctor says it’s no big deal, take these beta-blockers or take these rate control drugs, you know. It’s no big deal. We don’t need to fix it.” And a lot of times they’ll come to me and say, “Is that true?” Or I’ll get people that will say, “You know, my afib is really not that bad. When I have my episodes I’m a little winded but it’s no big deal, do I really need to think about having an ablation?” And I just want to cringe because it’s just like, ugh…

Dr. Steve Ryan: Same here.

Travis Van Slooten: You know it’s just like… So, Steve let’s talk about this. What are the health and quality of life issues that go into “living with afib“?

Dr. Steve Ryan: Well, it seems you and Travis, we both have had afib and we know how wonderful it feels to go from afib to normal sinus rhythm, and to feel wonderful, your body is alive again, you can do everything that you used to do. And leaving people in afib just makes no sense. Let’s say, I mean afib is a disease, it’s a progressive disease that tends to get worse over time and wreck your life and wreck your heart.

Let’s say someone had, God forbid, pancreatic cancer and the doctor told them, “Well, we’re just going to leave you in pancreatic cancer. We’re going to give you a few meds just to keep the pain away.” You look at that doctor and say, “You’re out of your mind.” Why leave someone’s heart in a disease state where you know they’re going to get worse and maybe eventually die from it? It makes no sense at all to me.

Travis Van Slooten: And I think part of the reason for this is with afib, you know, for some people when they have their episodes they don’t feel that bad, especially with people with silent or asymptomatic afib where they don’t really feel the episodes. But even if they have bad episodes, you know, for a lot of people they have an 8-hour, 10-hour episode that goes away and they’re good for another month, but I think what happens is they fail to realize the long-term picture here of what happens to your heart if it’s left in afib. So let’s talk about that. I think that’s the crux of the issue here is that people think “We’ll hey, it’s not that bad now,” but what they don’t realize is if you keep your heart in that states, as you talked about, down the road the end game is it could ultimately lead to heart failure. That’s the issue, right?

Dr. Steve Ryan: Yes, and many other things. Leaving people in afib is a death sentence. There’s all kinds of that document that. Here’s what afib does to you. Let’s say you give them the example of someone who has maybe a 10-hour episode once or twice a month. Having episodes like that enlarges and weakens your heart, and it leads to other heart problems and heart failure and cardiovascular problems. Afib, because it is a progressive disease it remodels your heart. I mean when we talk remodeling we’re saying your heart is changing permanently because of afib.

Now afib produces what is called fibrosis. Now fibrosis is if you look inside a heart you’d say smooth — in a normal heart you’d seem normal smooth heart tissue. It looks very healthy and red and everything is proper. When the heart becomes fibrotic, that smooth heart tissue turns into fibrous tissue. It turns it to basically dead tissue. There’s no transport function, there is no nerve going through, there’s no contraction. It’s dead. It’s like having dead tissue in your heart. And that’s what afib produces. And unfortunately, even though many of the remodeling effects of afib can be corrected by a catheter ablation, fibrosis is usually irreversible.

Now the other thing that afib does because when your heart is functioning normally, the atria, the upper part of your heart squeezes down, squeezes blood down into your ventricles and the ventricles and sends the blood to the lungs.

In afib instead of that squeezing down, that pumping down blood…if you look in your heart your heart is fibrillating, it’s vibrating it’s quivering, it’s not pumping properly. I mean, you’re losing 15 to 30% of your normal pumping ability of your heart. And this action tends to stretch and dilate your left atrium. If it goes too far you lose contractual ability of your left atrium to function at all.

And obviously if you leave someone in afib, the afib attacks tend to become longer and more frequent. There’s been a study where they followed people who developed afib for a year and they were just on rate control meds to control the heart from beating too fast, but leave them in afib, almost half within a year went into a chronic all-the-time afib (long standing persistent atrial fibrillation). Yeah, so the odds are really — I guess a lot of people don’t…I mean, how many people stay in paroxysmal occasional afib for years but the odds are against them.

Travis Van Slooten: I was one of those. I went 8 years, and then it was the 8th year where it spiraled out of control and became a weekly thing, and at that point I put the brakes on that and I had my ablation.

Dr. Steve Ryan: Yeah, good for you. And some of the other things that afib does is because you’re not getting enough blood to your brain to the rest of your body, people tend to develop dementia.

I’ve heard people describe being in afib like they’re in a brain fog. You know, they go to work and they can function. Things they used to do, no problem, all of a sudden they can’t even remember what they’re doing or how to do it. Or they used to speak a foreign language now they can’t anymore because they’re in afib.

One doctor gave at a conference gave an amazing example. His patient would be talking to him normally like a normal patient, he would go into afib and he could no longer talk. That’s the kind of thing that happens with afib. It just has really bad effects over time, and to leave people in afib like that is a death sentence – all too often.

Travis Van Slooten: And so what do you tell the person that again, they go to the doctor they have paroxysmal afib, which is just occasional episodes here and there that end on their own. They go to their doctor, they’re newly diagnosed — let’s say they’re, I don’t know, let’s say they’re 50 years old they’ve had one episode and so they go in the diagnosed “Yep, yep paroxysmal afib,” and the doctor typically in this scenario is going to say, “You’re fine for now. Here’s are some beta blockers,” or maybe “here’s a pill-in-the-pocket or whatever.” So that person will come to me or probably to you too Steve and I’m sure they’ll say, ‘Do I really need to be thinking about an ablation already at this point?” I mean, how do you handle that? What do you typically advise them to do?

Dr. Steve Ryan: Well the example you gave — in other words, if they’re taking flecainide as a pill-in-the-pocket they’re doing something, they’re trying to stop the afib, and they’re trying to stay in sinus with them. That’s good. I mean it may not be the best strategy but it may be something that will work for them for a while. But just the bad thing is to let people stay in afib and just give them a rate control beta blocker to keep their heart from beating too fast. That is what will kill somebody. But if they’re taking chemicals for drugs that will stop their afib, or if they have an attack will stop that attack, that’s good; it’s not the ideal but certainly they’re doing something to keep themselves out of afib, and that’s a good thing.

Travis Van Slooten: So the message here – and this is where I wanted to get to and I’m glad that we’re going there – is the message we’re sending here is — because I know it’s semantics, but if you were diagnosed with afib you have afib but then there are the actual episodes. To my mind they are two different things like I have afib but I’m not always in afib, I don’t always have episodes, at least for some people. So for the person that, okay, they’ve been diagnosed with afib but they’re not, they don’t have episodes all the time, in other words, they’re paroxysmal, the course of action may be fine to just stick with the drugs, but the key should be you’re taking those drugs, as you mention Steve, to get out of afib but not just stay in afib and make it tolerable.

Dr. Steve Ryan: Right, and of course we must say that anti-arrhythmic drugs are very imperfect, there’s no magic pill that anyone can take that will cure them of atrial fibrillation so they never have to worry about it again. The problem with today’s anti-arrhythmic drugs is that they don’t work or if they do work for a time they lose their effectiveness eventually, or they have bad side effects that they get impossible to take them. And they’ve done a number of studies where they have compared catheter ablation to taking anti-rhythmic drugs, and catheter ablation is much more healthy. It’s, you know, all the bad things that can come from staying like a lifetime on anti rhythmic drugs versus a catheter ablation where you’re cured of afib and you don’t have to worry about it anymore, there’s no comparison.

Travis Van Slooten: Yeah, absolutely. And then certainly for someone then that has persistent afib which means your episode is a week or longer or you have long-standing persistent afib, certainly those people should not accept the diagnosis that they should just live with their afib and here’s some drugs to make it more tolerable. Those are the people we especially are saying look, there is a cure or a potential cure out there for you and it’s probably going to be an ablation or a surgical procedure, but by all means you do not have to live with afib.

Dr. Steve Ryan: Right. Now in the example you gave we should tell patients that someone who has been in persistent afib for a while is not going to be as easy as someone who just developed afib. They may have to go to a master EP and they have to go through two ablations; one to get the main spot and second for a touch-up ablation, but it’s still a lot better than living with afib. And they should realize that if you have persistent afib you do not have to live in a fib. There is a cure out there. It may not be the easiest thing to do, or you may have to research and find the best EP doctor you can find, but there is light at the end of the afib tunnel. You don’t have to live for the rest of your life in afib.

Travis Van Slooten: And I think that’s such an important message because I get so many emails from people that are in persistent afib and they tell me you know my doctor says I’m not a candidate for an ablation because I’ve been in persistent afib for 2 years and they don’t want to touch me so they just keep me on drugs. Is that true? I mean that’s kind of the gist of a lot of the emails that I get, and I always tell them that’s absolutely not true. There is hope for you.

Dr. Steve Ryan: Yeah, and I can understand many of — first of all, not all electrophysiologists (EPs) are equal. Some are better than others, some are more experienced, some do not want to fool around with anyone who has been…in fact they will say in their statement on their websites, “We don’t take anyone who has been in persistent afib for over a year.” Why? Because it’s too difficult. But that’s not the case for some of the better people like you had your ablation by Dr. Natale, Andrea Natale, right?

Travis Van Slooten: Yes.

Dr. Steve Ryan: I mean people like him take those cases all the time.

Travis Van Slooten: Yeah, I mean 75% of his caseload is just that. But like you said, your path to a cure may not be necessarily easy but certainly do not give up and say, “Well this is my life and I just got to tolerate this for as long as I can with the drugs until my time is up.” That’s not the case. Good stuff.

Dr. Steve Ryan: I’ve got one other thing. At the last AF Symposium in January there was a presentation by a Dr. Marrouche that was perhaps the most important presentation in the last 10 or 20 years for patients. I mean it’s a groundbreaking study, and it relates to what we were talking about.

It’s called The Castle AF Clinical Trial. Now what they did was they took patients who had real bad heart problems, we’re talking ejection fraction of below 35%. These are people who probably without help would die within the next year. These are patients who had really sick hearts and they had ICDs or some kind of a monitoring device inside their heart that could tell the doctors whether they were in afib or not and what was going on in their heart. Dr. Marrouche started off by saying, he gave the example of a 50 year old patient of his who had an ejection fraction of 24%, I mean that’s really low. That guy is near death. So he had an ablation and he, by the way had moved from paroxysmal afib to persistent. He had taken anti-arrhythmic drugs that didn’t work; sotalol and Amiodarone, which Amiodarone is a killer.

Travis Van Slooten: Very toxic.

Dr. Steve Ryan: He had failed electrocardioversions. So he gave him an ablation and cured his afib and right away his ejection fraction improved from 24% to 44%.

Travis Van Slooten: Wow!

Dr. Steve Ryan: Now, what that means in practice is that this guy’s life was saved. He was no longer in danger of dying from congestive heart failure. And so he went on and described The Castle AF study with a bunch of patients like this and they found that after catheter ablation there was a 47% reduction in death rates. Now you’re saying, 47%, is that good? That’s fantastic! These patients were near death, and a 47% reduction in death rate for patients who had failing hearts, that’s incredible. In the catheter ablation group, 60% improved their ejection fraction by more than 35%. That is amazing.

Travis Van Slooten: That’s amazing.

Dr. Steve Ryan: That means that these patients who had a catheter ablation basically had their lives saved. They went from a heart that wasn’t functioning to a heart that was beating normally again. And after 5 years, 60% of the ablation group were in normal sinus rhythm compared to 22% receiving normal drug therapy. And that was you know, it could be rate control, it could be amiodarone, whatever people wanted to do. And there is a 38% reduction all across mortality. Heart failure emissions were radically improved. They didn’t go to the hospital anymore because they were cured, and obviously the quality of life was just amazingly better.

Now I want to read you something. I was at the conference and one of the interesting things about it was the question-and-answer afterwards. And I want to quote you something from Dr. Hugh Calkins at Johns Hopkins said, “This is such an unbelievably fantastic study. This is the first study to show that AF ablation improves mortality and heart failure; hats off to you for getting this done. All of us believed in this procedure but people kept asking us for hard endpoints, which you have provided.”

Here we have you and I both know how wonderful it feels to go from afib to sinus rhythm, but there were no studies up to this point that said it makes any difference. In other words, so what? So you’re in sinus rhythm, you still have the same mortality according to the AFFIRM study which is an old study that nobody follows anymore.

But now we have hard data that proves catheter ablation not only removes your symptoms, makes you afib free but lets you live longer. You live a better life and you live a longer life and the more healthy life. Now Dr. Douglas Parker from the Mayo Clinic added in the Q&A he said, I mean this is a little hyperbole, he’s exaggerating but he gets the point. “People everywhere were screaming with delight when they saw the results of your paper!” He’s right.

When you were there at that meeting it was like you were watching history unfold in a way. I mean historical finding that now everybody with afib knows that a catheter ablation will not only cure you and make you feel better but will let you live longer and more healthy life. That’s really important, probably the most important to study to come out for patients in the last 10 years.

Travis Van Slooten: Yeah, and that’s a published study so we can link to that and I can dig that up?

Dr. Steve Ryan: Yes, that’s a published study in January.

Travis Van Slooten: Perfect. And I think it’s important to, that study like you said these were people that were near death, so if they experienced that great transformation, imagine the guy that’s pretty much healthy and has paroxysmal afib, I mean the benefits for him are going to be… I mean, it’s amazing. Again, that’s why Steve and I are so passionate about this topic. There is no excuse to stay in afib.

Dr. Steve Ryan: Can you imagine, let’s say you’re someone with congestive heart failure; it feels like you’re suffocating, it feels like you’re going to die any minute. And 90% of people in this condition die within a year. And all of a sudden you have a catheter ablation and your heart is normal again, you’re having a normal ejection fraction. All of a sudden you’re out walking around, you’re talking to friends, you feel great. I mean you don’t feel perfect because it’s not…but your life you have your life back. Can you imagine what that means for these patients? It’s wonderful.

Travis Van Slooten: Yeah, and their families and friends. It’s just amazing. Thanks for sharing that study. Definitely I’ll be sure to link to that in the show notes so people can look at that. Awesome. Anything else that we need to discuss on this?

Dr. Steve Ryan: No.

Travis Van Slooten: So the message here Steve is clear. The goal for every afib patient should be to end their afib and not just manage it or tolerate it, correct?

Dr. Steve Ryan: Exactly. And we’re talking rate control where they just leave you in afib and don’t try to get you out of afib.

Travis Van Slooten: Yes, awesome. Well Steve it’s been a real pleasure talking to you and I just want to thank you for your time.

Dr. Steve Ryan: My pleasure.

Travis Van Slooten: And Steve you can be found at a-fib.com, correct?

Dr. Steve Ryan: Yes.

Travis Van Slooten: Awesome. And just a quick plug too, Steve’s got a great book, Beat Your Afib, available on his website and on Amazon as well. And Steve, are you going to be rolling out an updated version of that book, because I remember at one point you had mentioned you were going to work on an update. What’s the status of that?

Dr. Steve Ryan: Well, we’re working on the second edition but it hasn’t been coming along very well. We’ll keep trying. There’s just been a lot of changes in the last 4 years that needed to be addressed. The book right now is very factual and timely and helpful, but it’s just, there’s a lot of new developments like this Castle AF study. Those are the things that need to be added to the book.

Travis Van Slooten: Yeah, and the beauty of the book is as the title implies, “Beat Your Afib,” not live with your Afib so that’s why I wanted to put a plug in there for that book. Steve again, thanks for your time and we’ll talk to you soon. Thanks Steve.

Dr. Steve Ryan: You’re welcome.

Resources and Websites Mentioned:
Atrial Fibrillation Fact Sheet from the CDC
Editorial: Leaving the Patient in A-Fib—No! No! No!
2018 AF Symposium: Findings from the CASTLE-AF Clinical Trial
Catheter Ablation for Atrial Fibrillation with Heart Failure (CASTLE-AF Clinical Trial)

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