So, we have a very unique experience that we're pleased to share with you. As the title of this breakout session implies, it's really the patient experience, and it's an opportunity for you as industry representatives to go into the field to really understand what patients go through with this condition of eosinophilic esophagitis. I am honored and privileged to introduce you to the patient, David, who has agreed to share his experience with us. David, as a full disclosure, David is an acquaintance of mine. We're friends outside the realm of medicine, but I have recently started seeing David as a patient, and he's got some great stories to share with us about his experience with eosinophilic esophagitis. David, welcome. Thank you, Dr. Tierney. I appreciate it. I appreciate the opportunity, and I'd like to tell everyone in the office, I'm honored to be here. I'm honored to be here. I dig that guy's tie, so don't you guys like his tie? Yeah, thanks for the shout out. David is aware of what the goal is, and he has a copy of some of the questions. We've talked about what the goal of this session is. But you guys have the opportunity to ask him his questions as well as we go along. And you can just raise your hand, and if you ask the question to me, I'll vet it and share it with David. So David, to start with, can you tell us when and how you were first diagnosed with EOE? OK, I'll go back just a little bit before I was diagnosed. I've been aware of the condition in my life for about 16 years, 16 or 17 years. But I wasn't actually diagnosed with it as of yet. I noticed in my late 30s, probably when I was about 36 or so, 35 or so, that I just at times had trouble swallowing things. It was very subtle. And so you initially get that feeling that, oh, gee, I just need to chew my food a little more. I'll drink some more water, and then it would wash itself down. That went on for, gosh, I'd say probably maybe two or three years. At times, things might get lodged a little more, but I would wash them down boldly and move on. So I didn't realize that I had a condition, if you will, or a problem. So I spent 22 years in the United States Air Force. I was deployed into battlefield conditions in Afghanistan at the time with my unit, and we were eating in your standard field kitchen, chow hall, at the time. Well, I got a piece of chicken that I was literally sitting there discussing operations for that night. I was the night commander. I was doing a handoff with a guy who did the day stuff, and I couldn't get my food down my throat. I thought it had lodged, which it had lodged, and I couldn't breathe, period, dot, done. I couldn't breathe. I stood up, and I realized it wasn't going to go down. My buddy who was with me across from me looked at me, and I looked at him, and he goes, do you need the Heimlich maneuver? I kind of looked at him, and I said, I do. So I stood up, and a very violent scene occurred there in the chow hall where the food did dislodge. I got some of it down, blew the rest of it out all over the table. Of course, my buddy's going, you're getting it all in my meal. Gosh, I'm going to have to get another meal. Here we are. And anyway, after I had cleared everything, we did have one of our medics had been called, and he ran in, took me aside, made sure I was clear, made sure I was OK. But he was very, he looked at me, and he goes, let me tell you something, sir. He goes, don't write this off as you just didn't chew your food correctly, and that it just didn't go down. You have something wrong with your esophagus. You need to get that checked out when we get back stateside. So reluctantly, when I did get back stateside, I did go see a GI doctor, who then did give me a scope, an EGD, and then diagnosed me at that time with EOE. So it was, I think, 2012 when I was first diagnosed, but I'd been living with this condition for years before. That's, David, that's actually a fairly typical scenario, where we see patients that are trying to control their symptoms, trying to modify their diet, and just live with symptoms for a long period of time before they're actually diagnosed. Not an uncommon scenario. Sounds like that you experienced that as well. So you were in the middle of Afghanistan when this first happened. When you had your first, essentially, meat impaction in your esophagus, what was the resources besides somebody doing the Heimlich maneuver on you? Was there anything around to help you? Or is there care available? Yeah, we were actually on a base at that time. So there was a medical facility. Now, I have no idea whether they had equipment to dislodge this or not. I really don't know. I assume they did, because they were doing, they pulled guys back that needed more than just battlefield issues. And they could do things like appendix, those type of things they could do surgically there. Yeah. Have you had any other experiences where you had food get lodged and had to go to the emergency room or get emergent care? Yes. Food gets lodged fairly routinely. And so it almost becomes a kind of a way of life in a way, I guess you will. You become very cautious to what you're eating. But I did have two other instances. There was an instance, I guess it was in probably 2014 or 2015, where I got broccoli. It was raw broccoli that I'd been eating lodged in my throat at home. And the exact same thing happened. It got lodged to the point that I could not breathe. And I thought, well, here we go again. Maybe this time I'm not going to make it out of this and I'm going to die. But it did dislodge itself as my wife was rushing me to the emergency room. Upon entering the emergency room, I could breathe. They brought me back and looked at me, gave me some water. I was clearing the water down to my throat. And then about 15 or 20 minutes later, I was released. In another occasion, this was just two years ago, there are times with this disease where you feel like maybe you're getting a little bit better or you get more bolder, if you will. And so routinely, I do not eat beef as in steak or, you know, pot roast at all. It's just not in my diet, which is probably good for me anyway. But I gave the old pot roast to go at Cracker Barrel. Man, they got a really good pot roast, if you guys have ever tried it. They really do. So I gave pot roast to go. And this was on a Sunday after church. Me and my wife were at Cracker Barrel and I was eating pot roast. And bam, it lodged into my throat. Again, I exited the back of the building because I didn't want to cause a scene. And then went through a lot of violent gyrations, if you will, in the parking lot. My wife got me in the car again and rushed me to the hospital. On the way to the hospital, I could breathe again. And as I was trying to clear the meat, I was drinking water, but it constantly would just dislodge itself. The water would just go everywhere. Nothing was getting down my throat. By the time I got into the emergency room, about half of it had cleared. Doctors came in and observed me for about 20 to 30 minutes. I drank some water and then eventually, I think I relaxed to the point, or whatever relaxed in my esophagus to the point that the food did clear and I was okay and I was released. So those are the two times that I had to go to the emergency room. But then I've had other times that have been a little scarier. Yeah. So tell us, how has this disease impacted your quality of life? Well, that's an interesting question. I think the biggest thing as far as quality of life goes is you have to learn what you can and can't eat. And that takes a little bit of time. You've also got to condition yourself on how you're going to eat things. So it's what you can eat and then how you can eat it. And then you never want to set yourself up for a time where you're out in public and you're going to cause a scene. The other thing is, you go out socially, me and my wife, to different dinners or to family and friends. And there are just certain things I don't eat. And then people are wondering, hey, Dave, why can't you eat that? I'm always kind of making an excuse as to, you know, I got heart problems and I got high blood pressure. Right now I'm trying that weird new diet. It's the EOE diet, right? Nobody knows what the EOE diet is, but everybody's got a diet. But anyway, so it's that kind of thing. It's a little bit of fear that you have to live with and then controlling your lifestyle so that, you know, because that there's always that fear that, yeah, you could die today eating. What is your biggest fear with this condition? Well, there's several if you go with fear. So number one is absolutely the fear that I could die. The other thing is the fear that, you know, you're going to cause a scene, you're going to be embarrassed, and then you have to be rushed to the emergency room. But I think more importantly, as a man in my 50s with four children and four grandchildren, I think of children and I don't know what the data is or the statistics are on children that suffer from this, but I can tell you, you know, I don't know how a child would wrap their arms around what's happening to them if they're a child or a teenager because you're just going to be told, hey, you're not chewing your food. Hey, finish your plate. Hey, what's going on? Stop choking. You know, you need to chew your food more. I told you not to eat so fast. And that's not what's happening at all. And so I fear for that for other people because, you know, my experience allowed me to grow into this. And I'm a grown man. People who are younger or don't really pay so much attention to their health may have a completely different experience. So that's fearful, too. I think the last thing that I would say, and I discussed this with Dr. Tierney when he just gave me my EGD a couple of months ago, is that this disease was diagnosed and it's called EOE. Well, nobody knows what that is. And certain doctors in your profession don't really understand what that is. Others do. And so that's frustrating, number one. And I realize it's a new diagnosis. But I think the education in the medical community, you know, needs to come along. Okay, that's just my opinion. The second thing is this disease is a type two inflammatory disease that is persistent and it's chronic. Those are the three things I'm told. Okay, got it. So that means I'm always going to have it and it's going to get worse. And oh, by the way, we don't have an FDA-approved treatment for this. So when you wrap all that up, you know, there's that big hope or that little hope. And for me, it's always been that little hope that maybe somewhere along the way, something is developed that's more structured and more, you know, studied that people like me, people who suffer from this will be able to benefit from it. Yeah, those are very, very insightful, David. In fact, we've had conversations at this meeting about just some of those concepts of how there's an underappreciation of what patients with EOE go through. And that includes physicians. Many physicians or either other healthcare professionals really don't have a keen understanding of what it is to live with EOE and what the disease means for patients, both their quality of life and those scary life-threatening events that you and others with EOE have experienced. Can you, David, do you have any other allergic conditions that maybe were sort of a clue that something allergic was going on? Okay, so generally I don't suffer from any allergies, but I do get rashes for whatever reason and spots on my body. And that, man, that's been going on for a long time, probably since I've been a young man, maybe a late teenager. I don't know what that is. I'll get rashes maybe on my, especially in my groin or crotch area, sometimes my neck, and they just kind of come and go randomly. And I don't know what that is. I will also say that with that, I've been to an allergist, right? You know, you're always trying to chase down what's happening here. So I went to an allergist and everything was good. I didn't have any food allergies per se, except I was diagnosed with a wheat intolerance, not ceciliac, but wheat intolerance. So I thought, praise the Lord, praise the Lord, I'm going to go wheat-free, and this is going to solve what's going on in my body as far as the inflammatory condition that this is supposed to be. But I can tell you after two years of eating primarily wheat-free, nothing's changed with my condition. Okay. I'll also say, and I know Dr. Tierney's probably maybe discussed this with you guys. I have a very, very high IgE level. It's consistently in the 2000s and nobody can explain that to me. And we've tried testing, you know, you name it, but it's consistently in the 2000 range. Great. Okay, David, treatment, you've been diagnosed with this about 10 years ago. What sort of treatments have you gone on? You mentioned the wheat-free diet. Any other treatments that you've done and found helpful or not helpful? Or why don't you share that and then I'll ask you a few other follow-up questions. So I think the standard regime right now is a fluticasone. Did I pronounce that right? Fluticasone, yes. Fluticasone, which obviously is designed for lungs and asthma, but I'm told to squirt it in my mouth, hold it, and drink it down my throat. That I tried for a little bit, but you know, it just, I really can't tell you that helps. I like to think that it helps, but I think maybe that's more of the placebo effect than anything, I don't know. There's also, Bill, I've actually got it right here. What is this stuff called? Butazenide? Eudescinide. Yeah, eudescinide. So there's this nice cocktail here that again, I realized is another steroid that's being used to kind of coat my esophagus and stomach. Again, I would say there's some mixed results there as to whether it's working or not. And then there's the PPI regime for the GERD, because that's another thing that I haven't mentioned that I probably should mention is with this, I do get significant GERD also. So it's the throat, but also after I ingest food, I get significant GERD from time to time. And I do believe that the PPIs do help. I am on Dexalant, which there was no generic brand for. It's very expensive, but I can tell you Nexium does not work for me, but Dexlent does. So Dexlent has been a real lifesaver for me when it comes down to the GERD portion, which I think is saving my esophagus from all of the regurgitation that I get. So that's kind of the regime. Now, I will say on the herbal side, there's a substance called DGL, diglycerinized licorice. I don't know if I said that right. But I would take a chewable pill of that, which I think would coat my esophagus and stomach. And that, I would say I get the same effect from that that I do from the floconase or the whatever this is, this butazenite. So those are the things I've tried in the past 16 or 17 years or whatever, since I've had this. Have there been any barriers to getting treatment for over the last 10 years for you? I wouldn't say barriers so much as just, you know, we don't know what to do for you other than drink this stuff and be careful with what you eat. You know, that's probably the biggest thing. And then again, like I said, I can tell you primary care physicians, they don't know what this is. I think that it really resonates in your field. Primary care physicians are very unfamiliar with this. And so the big thing a patient has to do is demand I need to go see a GI doctor if they have that education behind them that they need to even need to see a GI doctor. They're not sure. So that would be the biggest barrier, I think, would be the education in the primary care physician's field. What's your biggest hope for your treatment of your EOE moving forward? What would be your goal and what would be your dream outcome? Yeah, so, you know, we live in America, right? So, you know, we always want the pill or the shot or whatever it is. So, you know, obviously, it is the hope for the future that something will be developed, which I know that, you know, there is something underway that I think has just been approved. And Dr. Tierney has discussed that with me. And again, that is my hope, is that something FDA approved will be available to patients that are diagnosed with this and then, you know, that just that education gets out there eventually, that this is an issue because, again, it's something that's very misunderstood. So as a result, you don't really get, I think, the attention that you need sometimes, even though it can be life threatening. And so that would be my hope for the future. What about your what what would be your symptom goal? What sort of quality of life would you like to experience if you had that ideal therapy? And yeah, that I could eat a filet mignon again, Bill, what do you think? Maybe me and you can go out to dinner together and I'll do that. That would be my goal. OK, so improve swallowing function and obviously no more visits to the ER would be another goal. Absolutely. Yeah, absolutely. How many upper endoscopies have you had that you recall? And what was your experience with that process of going through an upper endoscopy? I've had three. The second one was combined with a colonoscopy. The doctor could not get the scope down my throat, and she didn't have the ability to dilate my throat. At that time or wanted to dilate me. I'm not sure exactly what that was. So she discontinued that and we did the colonoscopy. So I've had one AGD that was actually unsuccessful because of my condition. And then two that were one of which Dr. Tierney performed on me just a couple of months ago. And, you know, that's not a bit too bad of an experience to have that done. But again, you know, it's still a surgical procedure. It's still a day or two of your of your life and time, you know, and there's the recovery time that goes with that. And, you know, but that's that's the EGDs aren't bad. I just I guess I just wish there was a there was a better, cleaner way of doing this. Great. If you guys have any questions, feel free to raise your hand. We do have one in the back. Yeah. Hi there. Thank you very much for being here and sharing your experience. I have a question about the quality of life impact, and I apologize if it's too personal. You can tell me that it is if you don't want to answer. But you mentioned that you have to learn what you can and cannot eat and you have to condition yourself on how you can eat. Can you give me a couple examples outside of what steak? We do hear that example here a lot. And I'm so sorry you can't eat it. Right now. But could you give me a couple other examples of what foods you are avoiding and then also what sort of other modifications you're making with the foods that you do eat? Did you hear that, David? Yeah, yeah, you bet. OK, so here we go. One of the big primary things is chicken. So I generally don't eat a chicken breast. I will eat dark meat chicken. If I'm going to eat a chicken breast, I always make sure that it has probably been marinated. I do kind of a little taste test on it to make sure that it is juicy enough for me and then that I'll be able to chew it enough and swallow it. So usually when I'm dealing with chicken, especially in white meat chicken, I'll do a look kind of a little taste, you know, a little slower, make sure everything's moving, then I'll continue. And then with dark meat, generally, I don't have an issue. Now, you can take that concept and apply it to any food that is firmer. Pork, certain types of fish. Generally, no problem with ground beef, OK, or, you know, ground chicken, that kind of thing. No problem. But even salmon, which I love. If it's a little too dry, I can't eat it. So I generally like to get things a little more medium to medium rare done, if well, if you will, and then make sure that they're juicy enough that I can ingest them. And I've already talked about raw vegetables. That's always a problem, especially if it's broccoli, carrots or maybe some type of cauliflower dish. And I'll tell you what, the big thing I really have to watch a lot of times are snacks because you start jamming a bunch of pretzels down or potato chips. And the next thing you know, you don't you're not getting enough moisture. And there's there's the food's not going down to start to become impacted. The other thing is I always make sure I've got one of these guys around. Right. I make sure I always have something with me, water, a drink of some sort that I can continue to ingest food if it starts to get caught or lodged. I hope that answers your question. Yes, it did. A question in the front here. You know, your family faces and caregivers and things like that as well. I know, you know, you'd mentioned the pediatric patients, and I got to imagine that's tough for a parent and the things that they have to change and do as well. So I don't know if you could touch on that. Yeah. So from a family perspective, that's interesting because, you know, my wife gets very frustrated with me at times. Now, I have a beautiful wife, four children, four grandchildren. We've been married 31 years. But I will say that she kind of has to adjust how she cooks things just for me. And, you know, that at times can get frustrating because I'm just going to go into the reality of, you know, she'll she'll do a great job, maybe cooking me something a little bit different. And maybe I still can't eat it. And it may just be depend on that. It may depend on my condition that day, whereas maybe last week I didn't have a problem. And that's why I think with this condition, it kind of can it's always there, but it'll get worse or flare up and then it'll die off at times. And so that that, you know, can cause, like I said, within the family, you know, kind of a. You know, it's interesting now my family understands that I have this condition now, but, you know, at first, you know, that that was a little bit of a struggle because, again, nobody really understands what that what that is or what it means. David, I just wanted to follow up on another issue. And when I first met you a couple of months ago, it was clear to me that you had really educated yourself about this disease a fair amount. Where did you get your information? What's your source of information? Are you connected with any support support groups at all? Or where do you get most of your information? You know, I generally just get my information on the Internet. I had looked up a few studies on dupexit, and that's that's where that's where it really started. I saw what stage of the testing that dupexit was in. And in in those trials and studies that I saw that were happening, I gleaned some from some good journal, you know, educated material on on EOE and what it was, you know, the different types of what do you call the IL-2s or whatever they are. Interleukins. Yeah, the interleukins and how they're interacting and, you know, all that good stuff, you know, so that's that's how I educated myself on it. And then, you know, from there, it was just, well, I'm going to keep watching the watching the world on this. And at some point, go tackle a GI doctor and say, hey, do you know about this? Because I I had approached another GI physician about this before I met Bill, and he wasn't familiar with it. So and that's fine. That's fine. I get that. So, again, I just basically educated myself. No, I'm not in any support groups. It's just something that I pursue myself. Great question here. David, thanks so much for sharing your story. And if this is an inappropriate question, Dr. Tierney, please screen it out. But you mentioned that you've done your own research on Dupixent. I'm not sure if you and Dr. Tierney have had a chance to discuss it together or not yet. But just from the research that you've done, what hesitations, if any, would you have about starting on Dupixent yourself? Well, me and Dr. Tierney have discussed it very, very briefly. But, you know, I think the only hesitation I would say is, you know, that it's say it's brand, brand new for this type of condition. And, you know, there's always that. Oh, my gosh, it's a shot. Right. I'm sure you guys are going to get this. It's a shot that I got to come in here every two weeks and get. I can't just take a pill, you know, or inhaler or that kind of thing. So it might be just the overall fear of the unknown in that it's a new treatment. And it's a treatment that's the regime where I may have to give myself shots or somebody might have to give me shots or, you know, that kind of thing. I hope that answers your question. Right here in the front right here. Hey, David, yeah, thanks for doing this. You seem like a great advocate. You said that you're not in any support groups, but I was wondering if your contacts with, you know, Beyond Family, have you found any other friends, relatives, acquaintances that have EOE? And if you have, has the number of people surprised you? You know, I will tell you that, you know, this isn't something I, you know, just bring up in conversation that I have this condition. And when I do, you know, I and when I speak with people, I will tell you, I have never met another EOE patient. So I don't know. I don't personally know anyone. Sometimes I wish I do. And just again, that's more of that, you know, that support and leveraging each other in hope and education for the future. But no, I don't. I don't know anyone else who's got EOE that I actively interact with. Yeah, I think your experience, David, is really common. In fact, it's not something people are out there talking about a lot. There's not a lot of publicity about it. And chances are you probably have met somebody with EOE, but neither one of you exchanged the information because it's just there's some inhibition about talking about it. I think Eric had a question. Thank you. Can you hear me? Yeah. Okay, good. Thanks, David, for the very nice story and a lot of insight that you have already provided. I have a question related to your story. And if you reflect back into what you have experienced, what is basically what did you wish you would have known to reduce this time of diagnosis that you have talked through? What were you expecting from either your community GI or, you know, the overall, you know, potentially the patient association? Is there anything that you would wish you would have received at that time? Yeah, you know, I can say that, you know, other than a proven treatment for the diagnosis, I really don't know what my doctors could have done for me any more than they did. So at that point, I think it's more of educating the patient on just how serious the condition can be, or could be in your future. That's something I wish that that initial doctor had really discussed with me. Because again, it's very easy to say, hey, you know, you don't have any, you know, you thank God, you know, because again, I could have throat cancer, right? I mean, you thank God that diagnosis isn't there or something like that. But it's something where the physician really points out how serious this can be, and then point out some of the strategies that you will need to use that I've kind of discussed today in the future. And especially when you're dealing with children, I don't know if you guys deal with children or young adults, or they're, I just fear for that group, especially because if the parents don't understand the consequences of EOE, then a child could die. Because they don't understand how to eat, and how I've taught myself to eat. And I don't know if the community's dealing with that or not. I have no idea. But that's something that I just gleaned from. I didn't have this when I was a kid. I developed it somewhere along in my 40s. I don't know why. If it was an underlying allergy that I've had from these rashes or whatever, that's kind of manifested itself. I'm not sure. I hope that answers your question. Absolutely. Thank you so much. It did. One more question. I had a question. As far as you've been on, I think, what, Fluticasone and the slurry, right? Bunesonide. Have you had any issues with your insurance and coverage? And if you're interested in using Dupixent, are you concerned about coverage or cost with your insurance moving forward? Okay, yeah, that's a great question. Thank you. With the Fluticasone, if I pronounce that right, there's no issues with insurance. I can tell you this right here is not covered. So this cost me $100 for a month's supply. That's not covered. And this is done through one of those organic pharmacies. It's a compound, right? It's a compound, right? And then I'm on Dexilent, which is not covered by my insurance company at all. Now, they're going to give me, what is it, Nexium. And there's a couple others out there that I can get, but they don't work. They're not nearly as effective as Dexilent is. Now, as far as Dupixent goes, I have no idea whether my insurance company would or will cover that. So that is something that I'm hopeful for. Great. Okay, well, listen, we do have to move on to our next breakout. You guys move on. And please join me in thanking David for sharing his story. I just want to tell you guys, I appreciate the opportunity. Thank you for all that you guys are doing. I really appreciate it and pray for each and every one of you. God bless all of you. Continue the good fight out there. And I thank Dr. Tierney for this opportunity. God bless everybody. Thank you. Thanks, David.

eosinophilic esophagitis

patient experience

swallowing difficulties

food impactions

quality of life

treatments

awareness