Welcome, everyone, to the Heart Failure Society of America and NeedyMed's Patient Education Webinar. My name is Larry Allen. I'm Medical Director of Advanced Heart Failure at the University of Colorado and Chair of the Heart Failure Society of America's Patient Committee, which oversees the society's patient and caregiver education activities. Today's presentation is titled Advanced Heart Failure, When Patients Should Seek Help, and will provide an overview of advanced heart failure and educate patients and their caregivers about the warning signs of advanced or severe end-stage heart failure. Our speaker today is Dr. Mark Drasner, Clinical Chief of Cardiology and Medical Director of the LVAD and Heart Transplant Program at the University of Texas Southwestern Medical Center in Dallas, Texas. Dr. Drasner has been at the forefront of research in the arena of heart failure and cardiac transplantation for more than two decades. Perhaps more importantly and impressively, he has received numerous teaching awards throughout his career. He serves on the Board of Directors and Executive Committee of the HFSA, as well as Associate Editor for the prestigious journal, Circulation. In 2018, he received the Linek Master Clinician Award and the American Heart Association Council of Clinical Cardiology. We would like today's webinar to be interactive, and as such, we encourage you to submit questions to us and the presenter using the questions tab on the left side of your screen. Please feel free to submit your questions at any time, including during the initial presentation. The question and answer portion of the program will immediately follow the presentation, and we look forward to a robust discussion. We would also like to point out a feature for those of you who wish to take notes during the presentation. When you click on the notes tab on the right side of the screen, you will see a white text box where you can take notes on today's webinar, and these notes will be emailed to you automatically at the end of the presentation. Without further ado, I pass it on to Dr. Drasner. Well, thank you, Larry and Dr. Allen. And I'd like to thank all the attendees for joining us today. We're extremely excited about this. We think this webinar will be both educational and informative, and as Dr. Allen mentioned, we're hoping that it will be very interactive, and we have left definite time for questions at the end of the webinar, and we'd like to be engaged with you all. I would like to, before we start, I would like to acknowledge the support the Educational and Patient and Caregiver Education Program has received through these four companies shown on the slide, and in particular, we'd like to recognize Abbott's contributions, which allow development of this particular educational program. Well, there's been a lot of educational efforts made for providers in terms of this area of advanced heart failure. Not as much previous work done in terms of educating patients specifically, and the HFSA in conjunction with some of our partners have agreed to take this on. And as you'll see, the objective of this program is really to empower you, whether you're a patient or a caregiver, so that you have more knowledge and you can be an advocate for yourself. And what we're hoping at the end of the presentation you'll understand is, first, what is advanced heart failure? Secondly, what are the warning signs that you should look for to alert you that you may need to seek help? And then lastly, if you do see these signs, what you can do. And so with that as background, let's dive right in here, and this concept of about advanced heart failure. Most patients with heart failure, in fact, can have their symptoms controlled, and with modern medications and device therapies can be stabilized and do quite well. However, there's a small group of patients who have heart failure who get worse despite these standard treatments. And there have been various names applied for this condition. Some people have termed this refractory heart failure. Some people call this end-stage heart failure. The national organizations of the ACC AHA have previously classified it as stage D heart failure. But the nomenclature we'll use today is advanced heart failure. And that condition, one definition for that condition, has been said to have refractory heart failure requiring specialized interventions, and I think towards the end of the webinar you'll see some of those particular interventions available. I like this cartoon here, this diagram, which is a pyramid of heart failure. What you see on the right-hand side, you see the severity of illness, and at the base of the pyramid or triangle, those are patients who are less sick. And as you move up the diagram, patients are having more severe symptoms, they're iller than the patients on the bottom part of the diagram. And you can see that advanced heart failure is at the top of that pyramid, and it represents a group of patients who have a more advanced condition. They're iller, they have a worse prognosis, more symptoms. Their condition is more advanced, hence the name advanced heart failure. I do want to make the particular point, you'll notice that that area of patients with advanced heart failure is a relatively small proportion of patients with heart failure. So if you are listening and you have heart failure, the vast majority of patients who have heart failure will not have advanced heart failure. But for purposes of today, we really want to focus in on that smaller subgroup and talk about what options are available for them. And so as I said, advanced heart failure is a serious medical condition. Patients are at risk for a poor quality of life. For those patients listening, those symptoms include shortness of breath, fatigue, perhaps just an overall lack of energy. Unfortunately, many patients with advanced heart failure will be in and out of the hospital, frequent hospitalizations. And then, of course, and unfortunately, this illness can be a fatal condition. It can be associated with death. Now, on the other side though, it's very important for everyone listening to recognize that there is hope. It's not all doom and gloom. There is sun. There are therapies that can help, even if you are in that small subgroup of patients who are in advanced heart failure. And with those therapies, those modern day therapies, your symptoms can be improved, your quality of life can be improved, and your overall health condition can be restored to a reasonable quality of life. And so there's a lot of help. Now, as background for this webinar, one issue that has been recognized is that many patients who have advanced heart failure appear to be identified late in their condition. And that delays their referral to get the help they need. And at that point, when patients are being referred relatively later in their illness, and if you try to deploy the therapies that we'll be discussing about, there's a higher risk of complications that potentially could have been avoided if the condition had just been recognized a little earlier. And so part of the message is we want to find patients who have advanced heart failure earlier in their disease cascade so that they can get help earlier, and then the therapies that are being deployed will be more successful. And the message that we are trying to get out today is that together, we can do better. And when we mean together, that means the healthcare professionals in conjunction with their patients and their caregivers. And the hope is that by teaching more about advanced heart failure, you can be empowered that will allow you to advocate for yourself and to seek the help that you need. And so knowledge is power, and what we're trying to do is provide the knowledge through this webinar. Okay, let's get to kind of the heart of the webinar, and that is, how do you know if you have an advanced heart failure? If you're a patient or a caregiver listening, how do you know if you fall into that smaller subgroup of patients and you actually have advanced heart failure? And although there are many ways patients with advanced heart failure can be identified, what we thought would be helpful is if we kind of crystallize it down to five simple clinical clues. And as we talk about these simple clinical clues, these are things that you can monitor yourself for. You do not need to be a physician, you do not need to be a healthcare professional. These are clues that once you know to look for them, are very easy to identify whether that be yourself as the patient or whether that be as the caregiver of the patient. And so we're going to review these five simple clues, and just as an overview, the clues are shown on this slide. The first one is that you have severe symptoms. The next is frequency of hospitalizations for heart failure. We already heard that patients with advanced heart failure are at risk of being hospitalized. The third simple clue is that you're unable to tolerate certain heart failure medications. Your physician or healthcare provider wanted to get you onto certain medications that we know are beneficial for your heart failure, but for whatever reason your body just wouldn't allow you to take them or tolerate them, and the medications had to be stopped. The fourth clue then is unintentional weight loss. And then the fifth clue is if you have an implantable cardiac defibrillator, so-called ICD, and you are having shocks from the ICD. And what we'll do now in the next series of slides is we'll go through these five simple clues one by one and give you additional information about them, again, the goal being that you can be on the lookout for these simple clues so that you can identify whether you may in fact have advanced heart failure. Okay, so let's begin with the first clue, and this is based on the severity of your symptoms. And the way healthcare workers assess your symptom severity, if we're assessing patients with heart failure, is really based on what activities trigger the symptoms. And patients who have advanced heart failure will get short of breath or fatigued with very minimal exertion. In fact, some patients with advanced heart failure will have symptoms even at rest, just sitting in a chair or in a bed at night will start having the symptoms of shortness of breath. Or with minimal activities, and that literally you will need to stop and rest. That might be in the morning if you're getting dressed and you have to, you know, you put on your shirt, but then you have to sit down. Or maybe with bathing or showering, you can't do the whole thing and you have to rest after that before you get dressed. Or perhaps something as simple as cleaning dishes is enough to exhaust you. Yesterday, I saw a patient in the clinic and he told me brushing his teeth would literally wear him out. And so if someone's symptoms are coming on either at rest or with minimal activity, these very basic activities that we all do, that is defining you as having advanced heart failure. And then patients a little, not quite as severe as that, but still very ill would be patients who they can dress and bathe and shower or do the dishes, but they're unable to walk one city block before they get exhausted or short of breath or tired. Now when I talk about this, many people say, well, my block is different than your block, but in general, one average city block at a normal pace. So it doesn't count if you can walk a block, but you walk extremely slowly, that would still be concerning. If at a normal pace, you are unable to walk a typical city block, that in itself would be concerning and may be identifying that you may in fact have advanced heart failure. Now just, I don't want to scare anyone. You may not have advanced heart failure if you have the symptoms that are the shortness of breath and fatigue with these activities that are listed, but you may, and it's something that you will want to talk to your healthcare provider about. Okay, so that's the symptom severity. And then the second clue is based on the frequency of hospitalization, and as mentioned before, many patients with advanced heart failure are in and out of the hospital. And the need to be admitted to the hospital for worsening heart failure symptoms signals that your condition is more serious. And once you're in the hospital, it turns out that about one in four patients get readmitted to the hospital within their next 30 days. And over the course of the next year, about half the patients, about 50% of patients will get readmitted to the hospital. And for those of us who are in this field, we now recognize that if you're admitted to the hospital for heart failure twice or more in any 12 months, so two admissions in a 12-month period, that that in itself can identify you as potentially having advanced heart failure. And you'll see there that the image shown on the slide is just a duplicate of the gentleman who was admitted presumably for heart failure. And the idea being with these two slides, these two identical slides, is that the patient had two hospitalizations for the same problem, that is the patient got readmitted for heart failure twice. And if that happened in the span of 12 months, that's very worrisome, and that in itself is a key clue that we look for to identify patients who may have advanced heart failure. So if you're listening and you've been admitted to the hospital two or more times, then that's worrisome and that's something that you definitely would want to talk to your provider about. Okay, the third clue then, this is in reference to the medications that I had mentioned earlier. And the concept here is that your healthcare provider wanted to treat you with some what we'll call heart failure medications. These are medications that have been studied and have been shown to not only improve symptoms, but also to improve survival, meaning they help patients who have heart failure live longer. And so these are medications that you would want to be on and your healthcare provider likely would have tried to start them. But some patients, their condition is so severe that their body just won't tolerate those medications. So you would want to ask your healthcare provider how to stop them simply because your body did not tolerate them. And as an example shown on this slide, one is because your blood pressure was too low. And then the second is because your kidney function started getting worse. We measure that through a lab test called creatinine. And sometimes if the creatinine starts to rise, that identifies that your body just is not tolerating these medications and you have to stop them. And the specific class of medications that we're referring to here are two. One are what is called ACE inhibitors. And you can recognize them because their generic name will end with the name Pril. So examples would be Enalapril, Glycinepril, Quinepril, Captopril. If you were on a medication or on a medication that ends in Pril, that would be an ACE inhibitor. And if your healthcare provider had to stop the ACE inhibitor because your blood pressure was too low or because your kidneys didn't tolerate that, that in itself could be a clue that you perhaps have advanced heart failure. The second medication with similar concerns would be the angiotensin receptor blockers. These are medications that end with Sartan. And so the generic name would be something like Losartan, Valsartan, or Candesartan. And so if you're on a medication that ends in Sartan, that's an angiotensin receptor blocker. And just like the ACE inhibitors, if your blood pressure didn't tolerate that medication or your kidney function didn't tolerate that medication, and your healthcare provider had to stop the angiotensin receptor blocker, that also is a potential clue that you may have an advanced heart failure. The other class of medications that may provide important information here are the beta blockers. And in this case, many times patients would have to have their beta blockers stopped due to progressive shortness of breath or leg swelling. Their heart failure symptoms would be getting worse. The beta blockers typically used for heart failure would be metoprolol, carvedilol, or bizoprolol. And so if you look at your medications and you're on or were on a medication, metoprolol, carvedilol, or bizoprolol, that would be a beta blocker. And if the beta blocker had to be stopped because you had progressive shortness of breath or leg swelling, that in itself is another potential clue that perhaps you have advanced heart failure. Okay. The fourth clue then centers around weight loss. And if you have unintentionally lost a lot of weight below your baseline for no other apparent reason, that is a potential clinical clue that you may have advanced heart failure. Now if you intentionally went on a diet or you have another reason for losing weight, like you have a major gastrointestinal illness or you had an operation and you lost weight for a reason, I'm not discussing that. But if there's no apparent reason for you to lose weight, that in itself could identify someone with advanced heart failure. Now you may ask how much weight should I get worried about? And on average, people discuss an unintentional weight loss of between 5 or 10% or more would be a warning sign. And so for example, if your baseline weight is 200 pounds and now you weigh 180 pounds, you have lost 20 pounds or 10%. If your baseline weight was 150 and you're down to 137, you lost between 5 and 10% of your body weight. And if there was no other reason for you to lose weight, that may represent weight loss from your heart failure itself and that could identify a patient who has advanced heart failure. And the picture shown on the slide is a gentleman who is very thin and what we would call catechetic, that person has lost a lot of weight from some illness. And if that illness was from heart failure, that could signify that their condition, his condition would be in the advanced heart failure category. Well, then the fifth simple clinical clue shown here, and that is for those patients who have a ICD in place. And if your ICD went off and shocked you, we know that could be a scary event. Sometimes it seems like a, people tell me it's like a lightning bolt coming out of the sky, totally unexpected. They were doing their activity and all of a sudden their ICD shocked them. It's a very scary event. But the fact that the ICD went off and shocked a person who had heart failure can, not always, but it can identify them as having advanced heart failure. And so if you're listening and you've had ICD shocks, that can be a warning sign that perhaps your condition has progressed and you may be in the advanced heart failure category. Okay. So we talked about what is advanced heart failure. Again, it's a small subgroup of patients who have heart failure. These are patients with advanced heart failure, have severe symptoms, they're at risk for having a lot of complications and they require specialized interventions. And then we went through these five warning signs, these five simple clues that everyone listening can look for. You don't need to be a physician to know that you're getting short of breath when you're getting dressed or showered in the morning, for example. And then, of course, the question is, okay, I've monitored myself, I've seen these warning signs and I'm concerned that maybe I do have advanced heart failure. So what can I do? So let's pivot and talk about what are the options. Well shown in this slide are your options of what to do if you in fact are concerned that you may have one or more of these simple clues. The most important thing is to contact your healthcare provider and express your concern. You can say you were listening to this webinar and you saw symptoms and you're worried that you may have them and you may like to come and speak about whether it's possible that you might have advanced heart failure. In addition to that, and one of the things you can always ask for when you're seeing your healthcare provider is ask whether it's time for you to get another opinion, another pair of eyes to look over your condition and see if there's something else that can be done. And as I thought about that, I would say one way to think about that is you can always ask your healthcare provider whether it's time for you to see a clinician who has additional or perhaps more specialized or focused training in heart failure. And so for example, if you're a patient with heart failure and for whatever reason you've never seen a cardiologist before, it'd be very appropriate then to ask to see a cardiologist. If you have been treated by a cardiologist and things are not going well and you're worried that you may have advanced heart failure, then you can always ask to see what is called a heart failure cardiologist or an advanced heart failure cardiologist. There are physicians out there who specialize in this condition and we'll discuss that in just a minute. But the message is if you're worried that you may have some of these simple clinical clues that they're in your life and you may have advanced heart failure, speak to your provider and ask that you'd like to perhaps get a second opinion or have someone else see you and perhaps someone who has more expertise. So if you've never seen a cardiologist, that would be a good person to start with. And if you're seeing a cardiologist, then you can ask to be seen by a heart failure cardiologist or an advanced heart failure cardiologist. And of course, you know, or you can seek it out yourself if you prefer. So what is a heart failure cardiologist or an advanced heart failure cardiologist? Well, these are physicians who have completed additional training beyond a general cardiology fellowship. And the American Board of Internal Medicine, or the ABIM, in fact does recognize this specialty as a board certified subspecialty that is called advanced heart failure slash transplant cardiology. That's what the ABIM calls this group of specialists, subspecialists. And you can go onto their website and you can find out if your doctor is ABIM certified in this specialty or for that matter, any specialty. It's very easy to do on their website. If you look around the country now, because this is a relatively new subspecialty, and if you look around the country, there's now, I believe, approximately a thousand such board certified advanced heart failure transplant cardiologists in the United States. And if you want to find one, most major medical centers now have advanced heart failure transplant cardiologists on their team, but you don't need to go to a major medical center. There are many in the community as well, but if you want to seek out a person like this, you'd want to find someone who is ABIM certified in this specialty of advanced heart failure transplant cardiology. Now let's say you do have advanced heart failure and you seek out a second opinion or additional help and you're told perhaps you do have advanced heart failure. What are the treatment options available at that point? An important message is that sometimes some relatively simple therapeutic maneuvers, treatments, need to be implemented or need to be given to you and that's all that's needed to stabilize you and improve you. Sometimes it's just a revision of your medication plan. Sometimes it's a change in your diet. It turns out that oftentimes patients come to our advanced heart failure center and they were unaware of the importance of restricting their sodium to some modicum amount. There's a debate about how much you restrict, but sometimes people come to us and they're eating eight or 10 grams of sodium a day. And I think most people would agree that that would be too much and if you can get patients to adhere to a more modest sodium restriction, two to three grams, oftentimes that in itself can be enough to stabilize a patient. Sometimes it's a specialized pacemaker, what we call a biventricular pacemaker or cardiac resynchronization therapy, CRT. Sometimes it will be referred to as a third lead needs to be put in. And if your EKG, electrocardiogram, suggests that you might benefit from that, there can be dramatic improvements from just getting that third lead or that biventricular pacemaker implanted. Sometimes it turns out that patients have blockages in their blood vessels and they benefit from opening up those blockages. Or sometimes we find patients and they have a heart valve problem and we just need to directly address the heart valve problem, which is relatively straightforward. And that is all that is needed to stabilize a patient and get them out of the advanced heart failure group and back to improved quality of life and stabilize their symptoms. Sometimes though patients do have advanced heart failure and some of the simple maneuvers above, relatively simple maneuvers above, are not applicable. One of the options may be to speak with a palliative care specialist. These are specialists who are expert at addressing patient's goals of care for patients who have chronic illnesses and aligning the therapy that is being considered with goals of care, focusing on quality of life. And so that's something that most medical centers, major medical centers have and most advanced heart failure teams have available as well to have a palliative care to discuss what might be goals of care or your goals of your life essentially. But there are other specialized treatments available. And in our community, this is often times termed advanced therapies for advanced heart failure. And you may hear physicians talk about advanced therapies. And when we discuss that, when we use that label, we're really just referring to two specific therapies. The first is a left ventricular assist device. You may hear that termed as an LVAD. These are essentially partial artificial hearts that are now being widely used around the world. They can be used both for patients who are heart transplant candidates to help the patient stay alive and be in high quality of being in good condition until the heart transplant becomes available. But LVADs can also be used for patients who are not transplant candidates. That's a strategy that we call destination therapy, meaning that the destination is the LVAD, not a heart transplant. And that's oftentimes applicable to patients who may be perhaps say above the age group that usually receives a heart transplant, say 75 years old or even older, who has advanced heart failure. The simple therapies don't work and the heart failure is progressing. And now we have a viable option for them with destination therapy left ventricular assist devices. The other advanced therapy available is, of course, heart transplantation, which is a wonderful therapy, but is of course constrained by the number of donor hearts that are available each year. But around the United States, somewhere in the 2,500, 3,000 patients a year are receiving a heart transplant. And so I think the take home point from this slide is that if you do have advanced heart failure, and let's say you do go and you seek additional help from cardiology, advanced heart failure cardiologists, and everything is reviewed, and there is no, none of the simple maneuvers that I discussed before appear applicable to you, and they say that you do have advanced therapies, you do have advanced heart failure, to know that there are things available that can help even if you are in that small subgroup of patients with advanced heart failure, there are therapies available that can help restore your life, quality of life, and bring you back and provide meaningful time and extend the duration of your life. So in summary, as I've said, advanced heart failure represents a relatively small group of patients with heart failure, for those listening, if you do have heart failure, I don't want you to walk away thinking that most of what I described today will be applying to you, it's a relatively small group. Patients with advanced heart failure have severe symptoms and they're at risk of complications, and then this is the most important thing to walk away from this webinar, these five simple clues. Remember that if you're getting symptoms when you're dressing, showering or bathing, or maybe cleaning the dishes, or at less than one city block, we consider that severe symptoms, and that may identify you as having advanced heart failure. If you've been in the hospital two or more times in the last 12 months, if the heart failure medications had to be stopped due to certain side effects, things like your ACE inhibitors, those end in the PRILs, or the ARB, angiotensin receptor blockers, end in the Sartans, or the beta blockers due to the side effects, low blood pressure, worsening renal function, more shortness of breath, or like swelling for the beta blockers, that may identify you as having advanced heart failure. If you have lost weight five to 10%, and there's no other apparent reason, unintentional weight loss, or if your ICD has gone off and shocked you, these five are the simple clinical clues I would ask you to look for so that you would know whether you may in fact have progressed into the advanced state. And again, the hope is that by discussing this in a very transparent and open fashion, that we can provide you these clues so that you can advocate for yourself or for your loved one should you identify these as having happened. And again, we really think it's very important that we form a partnership with the healthcare providers and patients working together in tandem so that we can identify the advanced heart failure. It's always sad when I see patients who get referred to me, and they get referred very late in their disease cascade, the length of their disease, and I look back in their medical record, and I see that there were these clues available. They had been hospitalized three times before, their ICD had shocked them, they had lost body weight, their medications had to be stopped, and yet that patient had never been referred for consideration of advanced therapies or referred to an advanced heart failure cardiologist. And it's somewhat sad. So the hope is that by working together with patients and caregivers, we can empower you, and together we can identify patients who advanced heart failure earlier in their disease cascade so that the therapies deployed will go better and we can get help to the patients who need them earlier. Now, if you do have these symptoms of advanced heart failure, again, the most important thing is to speak with your individual healthcare provider. But what I would suggest is that if you do have heart failure and you have never seen a cardiologist, it would be very reasonable to ask to do so, to ask to be referred to a cardiologist or to, frankly, just to make an appointment with a cardiologist. I think that's very reasonable. Now, if you have seen a cardiologist and still are not doing well, then the concept I introduced today was to ask to potentially see an advanced heart failure cardiologist. I suspect many listening may not even know that there's such a subspecialty, perhaps because it's a relatively new subspecialty, but there are, and these are physicians like Dr. Allen and myself, who have dedicated our careers to the treatment of patients, specifically who have heart failure, who have advanced heart failure, and are facile with the advanced therapies that we talked about, the LVADs and the transplantation. And so if you do fall into that category, there is hope. There are very effective therapies now available. We talked about LVADs and heart transplants. And so I don't want you walking away feeling that there's nothing else that can be done for you, because there definitely are very viable strategies, treatments now, that are available. Okay, I pivot here and just wanna point out that the Heart Failure Society, of course, is a leading organization in terms of the care of, in terms of heart failure, everything really centered around heart failure. And there's a website, there's a lot of educational resources available. If you go to the website that's shown here, www.hfsa.org, there's a patient tool tab on that website, and you can see their educational modules, there's a risk assessment toolkit, there's a patient app as well, that are all accessible to you. And then there's a new initiative, which I believe represents the commitment of the HFSA to patients with heart failure, is a new initiative, which is now that we have patient memberships, so that if you're a patient and wanna become a member of the HFSA, we have a new category of membership called HFSA Patient Membership. And that started in 2020. It's gonna be starting this coming year. And the HFSA will follow up with you, the webinar participants, to provide more information. And you can join to share your knowledge, your story, your experiences for the greater good of heart failure. And the organization sees many potential benefits through this membership. We'll be using it to identify patients who perhaps wanna get even more involved and perhaps have some leadership responsibilities serving on committees or task forces. Of course, collaboration, whether it's sharing your experience during events. We had a lovely patient and caregiver day at the Heart Failure Society Annual Scientific Meeting last month in Philadelphia. And we had many patients sharing their experience. It was a very moving, moving event. But you may also participate in advisory boards, patient surveys, panel discussions. You may interact with heart failure leaders. None of this, of course, is required. This is only for those of you who would be interested, but there are opportunities for collaboration. And then lastly, advocacy. You can help other heart failure patients. And you can also, for some of you, potentially get involved in advocacy at the federal and state level to change policy to improve and impact heart failure care locally or even on a regional, if not national, level. So we view this as a big opportunity for those of you who are interested in getting even more engaged. And we'll be, the Heart Failure Society will be following up with you subsequently about this opportunity. And with that, I am gonna turn the podium, so to speak, back over to Dr. Allen. Well, thanks for a great presentation, Mark. The slides and what you went over, I think, really give a terrific summary of kind of the landscape of heart failure once it becomes more severe or becomes more advanced or isn't responding as well to therapy. So we have some great questions and comments to go over. And I'm gonna actually start off. The first question we received, I think, is a perfect place to start. So Jeff Wexler asked, is advanced heart failure the next stage for a patient who currently has congestive heart failure, CHF? And I guess, Mark, I'd ask you a little bit more to comment maybe on the stages of heart failure and the classes of heart failure. Sure, thank you, Jeff, for answering that. That is a great question. So in terms of the specific question, it is important to recognize that with modern therapy, the vast majority of patients who have heart failure will not progress to an advanced state. With modern therapies, we can not only stabilize many patients with heart failure, we can actually improve and what we call recover their heart function so that they even get better than when they first present with an illness. And so if you are listening and you have heart failure, you are not destined to develop advanced heart failure. With modern day therapy, you can stabilize and if not improve, and it is not a guarantee at all that you are gonna progress to advanced heart failure. You may stay in your current state. I have patients now having practiced for two decades who 20 years later are doing just as well as when I first met them, if not actually doing better with the modern therapy. Now, there are various stages of heart failure. We think about patients who are at first, the first stage is we think about patients who have risk factors for developing heart failure that actually don't even have anything wrong with their heart. Those are people who, for example, have diabetes and hypertension. Then there are people who have heart function problems but don't actually have symptoms. And then the next stage is patients who have symptomatic heart failure. That's the vast majority of patients who have heart failure. And then the advanced heart failure would be the last stage. That's that small subgroup shown at the top of that pyramid in the earlier slide. Now, there is a distinction between stages and classes of heart failure. The stages is what I tried to describe, the people having risk factors, people having a heart problem but no symptoms, patients having heart symptoms plus heart problems, and then the advanced stages, the A, B, C, D stages. When a patient does have heart failure, then what we do is we stratify them and we put them into one of four classes. And that is really based on the severity of your symptoms. So for example, a class one patient would really have no symptoms, class two would have what we call mild symptoms, class three would have moderate, and then class four would have more severe symptoms. And so the most of the patients who have advanced heart failure would fit into the, what we call NYJ class four, or some of the more advanced class three patients. And the way we put our patients into these classes is based on what level of exertion causes the symptoms. So for example, if you are getting short of breath when you're getting dressed or showered or at rest, we use that information and we say that patient has class four heart failure. If the patient, for example, gets short of breath walking one city block, we say they have what we call a class three B heart failure, we subdivide the third category. And so the classes are applied to patients of heart failure and the classes are based on what level of exertion brings out your symptoms. Great. A comment I was just gonna make is you said over and over that advanced heart failure is a small portion of overall heart failure. And it's a little hard to define exactly how many patients with heart failure have advanced disease. I've seen estimates, Mark, that if you take all the people who have heart failure and have symptoms related to that, so stage C or D, that about five to 10% of the patients will be stage D and about 90 to 95% of patients at any given time will be more stage C or stable. They feel their heart failure, they have it, but they're doing okay overall day to day. Is that an estimate that you have heard as well? Yeah, I agree. It's difficult. Some of it is that defining advanced heart failure, we try to kind of come up with a little simplified definition that's not widely accepted, I think, in the literature, as you know. But somewhere in the five to percent is kind of what I think. And in general, the estimates, some people have said somewhere between 40 to 100,000 patients in the United States, which sounds like a lot, but when you think about there may be 5 million patients who have heart failure. So it's not rare. It's just a relatively small subgroup of the overall large epidemic number of patients who have heart failure, which that is in the millions. Yeah, and you also commented, but one of the next questions that Jeff raised in follow-up was, are there specific treatments when in stage C heart failure, congestive heart failure, to stave off progression to advanced heart failure? And you commented that not everybody progresses. Some people get better. I think one of the really exciting things for me, having been doing this for 15 or 20 years, is that 25 years ago, I think many of our patients who had advanced heart failure, or sorry, who developed heart failure, would often progress to advanced heart failure because the treatments weren't as good. And one of the things that's really exciting over the last decade or two is that we actually have a lot better therapies than we used to. So it's not uncommon now to have a patient who presents to the hospital with new shortness of breath, gets a diagnosis of heart failure, and gets put on a variety of medications and will get better. I think the percent of those patients who did that many years ago was quite small, and now the chance of getting better with good treatment is actually a lot larger. So one of the things that's great that we're seeing, I think, is less people head on to advanced heart failure. Maybe, Mark, do you want to comment about some of the therapies you've specifically seen that have been kind of life-changing for your patients? Sure, and I think that's a great point, Larry, because when I first got into this, patients who had heart failure, we didn't really have the modern therapies, and it was a completely different story than patients with heart failure. It'd be very hard to get them better. Now with modern therapy, estimates are if someone presents with a new diagnosis of heart failure with a weak heart, what we call a low ejection fraction, somewhere between a third and a half of those patients can have dramatic recovery of their heart function and get normal or close to normal heart function, one-third to one-half for patients who present with a new diagnosis of a low ejection fraction of heart failure. It was never like that before we had the modern therapies, and the modern therapies are several of those I've mentioned. These are the same medicines that, if you're having stopped or warning signs, these are the medicines that we know are beneficial. So the first medication that came onto the scene was the ACE inhibitors, followed closely by the angiotensin receptor blockers, but I think the game really changed when beta blockers arrived, because not only can you stabilize patients like you can with ACE inhibitors or the angiotensin receptor blockers, but you can actually improve and recover function, and we saw that with the beta blockers in a way that we had never really seen that before. The field has gotten complicated, as you know, Larry, and we have now multiple classes of medications available. The so-called mineralocorticoid receptor antagonists, the newest class, the angiotensin receptor, neprilysin inhibitors, the ARNIs. We have the three-lead pacemakers, the biventricular pacemakers. There's a lot of therapies, now the SGLT2 inhibitors. Larry and I were both at the American Heart Meeting just a couple days ago, and there's a lot of hot data related to those classes of medications as potentially helping patients who have heart failure even independent of their diabetic status. So these are some of the medications, and the way the field implements this is there is a guideline document that is developed by national experts, and there are therapies that have been shown to be beneficial for patients who have heart failure in clinical trials, and they get listed in the guideline as being class one, meaning you really should be using these therapies. And now, when we first started, there was essentially no therapy when I first started, and now the field, as you've heard, many therapies are now available, and with this combination, it's a very powerful combination strategic approach, many patients can be stabilized and improved, in fact, by deploying these therapies. Along those lines, one of the things I wanted to say, Mark, is you talked about LVADs and transplants, and clearly for the subset of patients who either don't respond to therapy, or for whatever reason, have gotten into end-stage heart failure and now can no longer be recovered, they are great therapies. Transplants and LVADs have really saved many lives and really can change the course of the life for somebody who's effectively even dying from heart failure. But I like to tell patients that LVADs and transplant are really plan B, that's not your first option. The goal is to avoid those treatments and to avoid getting into a stage where you have to think about those things. So even though this is an advanced heart failure talk, and we want to help people recognize when they start having concerning warning signs, you know, the other reason to have this talk is to say, we really want people to do everything they can early in the disease or even at the beginning of the onset of severe symptoms, so that potentially we can pull people back from the brink of that and not have to think about those bad therapies, so those, you know, very serious therapies. So I think the lesson today is, the first thing is to avoid getting to advanced therapy, and the second is, if for whatever reason, people progress to that, there are second options, but those are, we would prefer not to get there in the first place. Yeah, I think that's a great point. And, you know, from an advanced heart failure, our advanced heart failure center, I'm sure like yours, when patients come to us being referred, we're always looking for what I described earlier, some of the more simple things, because it's a home run if you find someone and you deploy one of these, you know, much less aggressive therapies, and you can stabilize them short of that. But it's also important, as you said, that if those therapies, those more simple maneuvers don't work, that now we do have therapies that are great options. If even you fall into that case where the more simple things don't work, there are therapies available for you. So even in the worst case scenario, where the conventional therapies aren't working, we still have other therapies that are available out there. I think what's sad is that there are patients, I'm confident of this, who have advanced heart failure, and they really do have advanced heart failure, and there are, the litany of the conventional approaches have been tried, and they have progressed to the point where there is really no other option. And they're not exposed or given an opportunity to explore these advanced therapies, which, as you know, are great options for the right person. So we always, the home run is avoiding this situation, but if the patient has no other option, it's important that people know that there is help even under that circumstance available. So I've actually got a couple of different questions, Mark, about comorbidities. One question asks about comorbidities contributing to the disease. Another asks about comorbidities causing patients to decompensate or to get worse and require hospitalization. And then there's a specific question about allergies as a comorbidity or relating to heart disease. Do you wanna maybe comment about comorbidities and the frequency and some of the common ones and maybe the importance of treating all the problems the patient has? Sure, so one of the aspects of heart failure that when you're in the field you recognize is that there's a lot of intersection between the heart and the rest of the body. And when patients develop heart failure, it really has kind of a systemic effect on the body and can affect multiple other organs. And so the two that I'll, well, the three that I'll highlight. One is the kidney function. And when the heart is not working well and you're building up fluid or the heart's not pumping enough blood around the body, essentially the kidneys start to complain. And when we see the kidneys start to complain in the setting of heart failure, that's telling us that the heart failure is severe. And so there's a frequent concomitant kidney problem in the setting of patients who have heart failure. The second one is the GI tract. And before I got into this field, when I was in medical school, I really did not appreciate this. But many patients with heart failure, their symptoms are related to gastrointestinal manifestations. And I have seen all types, whether it's abdominal bloating, whether it's abdominal pain, inability to eat, getting full quicker. As patients develop severe heart failure, there's profound effect on the gastrointestinal tract. And that manifests itself in symptoms, as I just mentioned. And then also that ultimately undoubtedly contributes to part of the reason why patients lose weight. So there's this interplay between GI symptoms and heart failure. The third comorbidity then is the heart and the lungs. And there's no question that there seems to be patients who in the setting of heart failure may develop say a upper respiratory infection or maybe a simple bronchitis. Something that if they didn't have heart failure, maybe would keep them at home for a day or two from work, but not have a profound impact on them. But in a setting of heart failure, patients who maybe is even just a simple upper respiratory infection or bronchitis, that then tips over their heart failure and makes it worse. And then they become more symptomatic, more short of breath and develop decompensated heart failure. At our center, we've taken to calling this syndrome kind of a cardiopulmonary syndrome, where there's some heart failure and there's some bronchitis or some upper respiratory infection. I think as we're moving into flu season, we'll see a lot of that. And so there is a definite overlap between heart failure and I'm not gonna go through others, but I would highlight those, the lungs, the cardiopulmonary syndrome, the kidneys, where the kidneys start to complain, and then the profound impact on the gastrointestinal tract in the setting of heart failure. You wanna add to that? I know you have an interest in this. Yeah, we did a look across a huge health system of patients who had heart failure and asked, well, how many other medical problems do patients have? And the answer was that if you're a person who's developed heart failure, on average, you have about four other major medical problems. So I think sometimes as a heart failure specialist or a cardiologist, we can tend to focus on the heart, but if we're gonna do a good job helping our patients feel better, live longer, have good health, we can't think that way. We really have to address, are people getting flu shots? Are people having their lung disease treated, whether that's asthma or COPD? Have they stopped smoking? That's just an example of the importance of really thinking about integrating care. And so that means not only are we working with patients and thinking about what's most important to patients, but we've also got to practice together as a team. And one of the things that I think patients can help us with is the patient has to live with these problems all the time. And the patient is the one person in the team that sees all the other members of the team. And so I often tell my patients, they're really the quarterback. They're the ones who are in the middle of the play bringing everybody together. And patients who are engaged and knowledgeable and good at communicating and keeping up on their records and knowing their medicines, that makes a huge difference, not just in the management of heart failure, but in the management of health and disease. There was one question I wanted to get to about atrial fibrillation. We just talked about comorbidities or other medical problems that are outside of the heart that affect heart function and heart failure. But the other thing to think about in terms of comorbidities is what are diseases of the heart itself that then worsen heart function and thus exacerbate heart failure? So some examples of this are people who have coronary disease or blockages of the arteries to the heart. That can cause heart failure and it can also exacerbate heart failure. Another very common problem that we see in around 40% of patients with heart failure is that they develop electrical problems. And the most common electrical problem is atrial fibrillation. And for patients who have heart failure with a weak heart and a low ejection fraction on echocardiogram, there's some data that doing an afib ablation or a procedure to get people back into normal rhythm, normal electrical activity, that that sometimes can help some patients. So there are many types of therapies we can think about and those therapies come in the form of pills, they come in the form of procedures. And so it's good to be talking to a heart failure specialist who kind of thinks about the disease frequently and all of the potential options for treatment. I did get a specific question from Ronald Smith asking, if I get an afib ablation and I have heart failure with low ejection fraction, like 20%, does that procedure work? How long does it last? And I think we're still learning, but atrial fibrillation ablations are not always successful. In about 80% of people, they'll get them back in normal rhythm. And then once they get into normal rhythm, after about six months, that's relatively durable, but can falter at some point in the future. And so that the staying out of atrial fibrillation will wane somewhat over time. And we do know that potentially the benefits of atrial fibrillation ablation in people with heart failure and reduced ejection fraction are bigger, but the success rate is a little bit lower. So I often tell my patients somewhere between 50 to 80% success rate. And that success rate probably goes down a little bit over time, but it depends on the patient. It depends on the severity of underlying disease, both in terms of heart failure and atrial fibrillation. I just wanted to finish up in the last minute with a couple of questions more about HFSA and about logistics. There was a question about if you wanted to review this or send this to somebody else, again, go to the site hfsa.org. And on the left side, there is a tab for patients. And under that patient tab, there are a number of tools and resources for patients, one of which includes the webinar series. And the second webinar series that's highlighted is the one today. And this presentation will be posted there. Otherwise, if you're interested in being a member, you are gonna get an email after this presentation. And you can also go to the HFSA website again to look for ways to engage the HFSA. And we're looking for teamwork and people who really wanna help keep HFSA as patient-centered as possible. So let me conclude by thanking everybody for participating in today's webinar. And we will ask that you please complete a brief evaluation of the session. The evaluation will now be on your screen automatically as we close. And otherwise, again, thank you. And we look forward to engaging you further through the HFSA. Thank you, that concludes our program today.

Advanced Heart Failure

Seek Help

Dr. Mark Drasner

Warning Signs

End-Stage Heart Failure

Treatment Options

Cardiologist

LVADs

Heart Transplants

Patient Membership Opportunity