Real Talk: Eosinophilic Diseases

American Partnership for Eosinophilic Disorders
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Eosinophils are a type of white blood cell that play a role in immune responses and help fight off infections. When these cells build up and cause inflammation in the digestive system, tissues, organs, and/or bloodstream, without a known cause, it may be the result of an eosinophil-associated disease. Join the American Partnership for Eosinophilic Disorders (APFED) for a series of conversations with researchers, clinicians, patients, and other community members as we discuss practical strategies for disease management and treatments, research, and other topics of interest.

  1. 30. Juni

    Community Conversation: EoE + Elimination Diet as a Young Adult

    Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, interviews Maddie, a young adult living with EoE, about her journey with EoE and navigating an elimination diet. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:51] Host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda.   [1:07] Ryan introduces today's topic, eosinophilic esophagitis (EoE). EoE is a chronic, allergic, inflammatory disease of the esophagus. It occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable.   [1:25] Ryan introduces and welcomes today's guest, Maddie, also known as Eosinophilic Chick on Instagram. She's a patient advocate living with EoE.   [1:38] Maddie was diagnosed with EoE in 2021. She has been symptomatic for 10 to 12 years, but was not familiar with the condition itself until then. In her childhood, she was afraid of the upper endoscopy procedure, so she avoided it as much as she could.   [2:06] Besides the patient advocacy that she does, Maddie is an actuary. Throughout the week, she dedicates time to the healthcare industry space in the Philadelphia area. Maddie is 26, navigating her 20s with EoE.   [2:24] Ryan says he feels like being diagnosed as a young adult can be a very big shift. You're going through a lot of other changes: graduating from college, having to figure out work, and having to start managing a chronic illness like EoE.   [2:46] When Maddie was 12 years old, she would have a blockage in her throat. Typically, she walked away from the dinner table and had to regurgitate the food she had consumed.   [3:02] Since heading into college and becoming aware, with the pandemic, of the symptoms of COVID, shortness of breath is one that she leaned into. When she was 21, she felt like she couldn't breathe. It turned out that she was choking on food.     [3:18] There was an impaction, which Maddie obsessed about over time. In addition, around the time she was 21, her symptoms got the best of her. She wasn't able to keep up with thriving, day to day.   [3:31] As a child, some of her symptoms weren't normal, but they were manageable to adapt to: throwing up after a meal, here and there. Her symptoms started to pick up, and she started to lose a lot of weight in her 20s. That's when she sought a diagnosis.   [4:18] Maddie thought it was related to her lung function. She started to lean toward getting diagnosed with asthma, but after testing, that wasn't clear. Her gynecologist thought it was more of a hormonal conflict. They did a lot of labs but got no diagnosis.   [4:45] Meanwhile, Maddie was getting sick. As a last resort, she headed over to gastro. They didn't find anything initially. They did a barium swallow test, another lung function test, and finally, an upper endoscopy.   [5:04] Maddie had spent most of the summer before her senior year of college just trying to figure out what was going on, doing a multitude of tests, and that upper endoscopy with a biopsy captured the EoE.   [5:17] Maddie was able to get support from a specialist who dedicates all of their day-to-day work to EoE treatments.   [5:25] Ryan says it can be tricky to figure out right away what's going on; there are so many other conditions that could be the answer. Until you get to that final diagnosis, it can be a very long process. He's glad she got an answer, eventually.   [5:53] Maddie says, given the timeline of her life, a lot of people were anxious and worried about her future.    [6:08] Once she was able to get that answer, Maddie noticed a lot of relief from a ton of her symptoms, once she was able to get to work on it. Maddie also had an ulcer from frequent vomiting.   [6:25] Maddie had to slow everything down and be very intentional about the things she ate.   [6:51] Maddie lost 15 pounds that summer, as she was trying to gain weight. Whatever she ate, she still lost weight. She was worrying about that rather than about graduating that year.   [7:08] Maddie wanted to know how to register as a disabled student at her university to make sure she got all the resources she needed to be successful.   [7:18] Maddie was rewiring the things she once was worried about, relative now, to what this condition has packaged with it. It was a difficult time. It taught her a lot about discipline, making sure that hard things don't turn her away from achieving the goal.   [7:46] It taught Maddie about being intentional with her time and energy, what's best for her, what's going to make her succeed with whatever goal she's achieving.   [8:07] Ryan says now that Maddie is properly diagnosed, he hopes she's a little bit more in control of her health. Maddie says, "Answers are the biggest power with this condition."   [8:30] Maddie says that before her condition was managed, she went to the ER three times. The first time she was hospitalized, she could not keep down food for two days, so she had to get IV treatment. It wasn't necessarily an impaction, but she wasn't able to eat.   [9:04] The second and third times Maddie went to the ER were related to throwing up again.    [9:26] Maddie's goal was to stop vomiting altogether. She started to get serious with diet therapy, leaning into her six-food elimination diet.   [9:39] Maddie started the diet the week after she graduated, just to be home and have a lot of variables controlled to try the diet, rather than cutting corners. It was really simple to do at home.   [10:04] Maddie first tried cutting dairy, eggs, and shellfish. Her sister is allergic to those foods and is anaphylactic; Maddie is not. That elimination diet was helpful, but it didn't check all the boxes where all her symptoms were free.   [1024] Maddie tried swallowing medication from an inhaler instead of inhaling it into her lungs, trying to coat her esophagus with it. It was effective in the biopsy results, but she was still getting sick, so she did not feel comfortable proceeding with that treatment.   [10:42] All roads led to the six-food elimination diet that could reveal what the culprits were and what was causing her to be so sick. The results were surprising.   [11:06] Soy was a big trigger that surprised Maddie. She consumed so many soy products. That was quite humbling to hear. That was one of her biggest triggers.   [11:34] Maddie completed the six-food elimination diet with triggers of soy, eggs, dairy, nuts, and shellfish. Because of all those groups, it was really difficult for her to manage her diet effectively when going out to eat.   [11:52] Sometimes soybean oil is in a salad dressing or how foods are fried, to a point where Maddie wasn't able to maintain her EoE count below 15 eosinophils per high-powered field.   [12:08] With that, she started with a biologic, dupilumab. That enables her to eat all her trigger foods. An injectable is tough for Maddie as she's not fond of needles.    [12:36] Now Maddie can eat all of the food groups, which is definitely a huge win in terms of her treatment plan. It lessens the impact of living every day with EoE.    [12:53] Ryan says he is on dupilumab, as well. It works well for him. Maddie says she is not avoiding any food triggers, and that's the best part.   [13:24] Ryan says it takes a huge mental load off when you're not having to think about whether there may be soy in what you order from a restaurant, or having to check all the ingredients at the store to make sure that you're not accidentally being exposed.   [13:53] Maddie says, the best advice I would give [to someone on an elimination diet] is focusing on the perimeter of the grocery store. A lot of those foods are dedicated to being whole foods. So, I found that approach to be the most successful.   [14:12] Maddie says, and still finding things that you love and can find new things to enjoy. You're entitled to absolutely enjoy food. It brings a lot of joy into my life.   [14:23] Maddie says, I would specifically love traveling to a bunch of different grocery stores and exploring the allergy aisle. Everyone had their unique niche for it. So, you'll definitely find ones that are more favorable to your preferences than others.   [14:37] Maddie says, but find things, too, that you still enjoy beyond just feeling fully nutritious, and strong, and equipped. You're entitled to indulge, too, even with all the restrictions that you have.   [15:00] Ryan agrees there are a lot of options out there. Exploring and finding something can be really impactful from a quality-of-life perspective, just to have something new. Sticking to the border of the grocery store is a good way of putting it.   [15:13] Ryan says it's everything in those center aisles that gets so complicated. There are always some good, whole food options on the edges, which is nice.   [15:23] Maddie says read every food label, even if you think that you know what's in the food products. A brand of hummus had soybean oil in it. I had to retest, and it added six additional weeks onto my game plan because of that silly mistake.   [15:40] Read everything, even if you think you know it. Odds are, you don't. Don't trust any label until you've fully read it and are confident.   [15:56] Ryan says one of his trigger foods is rice and it does pop up in weird places. Once he was eating potato chips, but then he looked at the

    36 Min.

  2. 21. Mai

    Community Conversation: EoE

    Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Phillip Arceneaux, PhD, on his journey with EoE and balancing his career. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:12] Holly introduces today's topic. It's May, and each year in May, there are several awareness observances for eosinophilic-associated diseases, including National Eosinophil Awareness Week, World Eosinophilic Diseases Day, and World EoE Day.   [1:29] Throughout May, APFED is sharing stories from individuals and families living with eosinophil-associated diseases to highlight the impact of these chronic conditions.   [1:38] Ryan says, Today, we'll be discussing eosinophilic esophagitis (EoE). EoE is a chronic allergic inflammatory disease of the esophagus. It occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable.   [1:56] Holly introduces today's guest, Dr. Phillip Arceneaux, a patient advocate living with EoE since 2019.   [2:18] Phil is 35. He was born and raised in Lafayette, Louisiana. He received his undergraduate degree there. He worked at the U.S. Naval Academy in Annapolis, Maryland. Then he worked at the University of Oregon.   [2:38] Phil moved to Florida and did his Ph.D. in Mass Communication at the University of Florida. Since 2020, he has been based out of the Cincinnati area, working at Miami University of Ohio.   [3:05] Phil was diagnosed with EoE in March of 2019, while finishing his degree at UF.   [3:12] Phil was eating dinner with his girlfriend. He took a bite of a roast beef sandwich, and it didn't go down smoothly, it became impacted.    [3:56] Phil thought he had food stuck in his windpipe. He was running around banging his chest. He calmed down and was able to get some of the food out, and he was breathing again.   [4:12] Phil thought he was fine. He quickly realized he wasn't. He still had a partial impaction. He didn't know what was going on in his chest. He spent about 30 minutes moving around, coughing, and trying to get his chest to feel right.   [4:44] After about an hour, Phil decided to go to the ER. His girlfriend insisted on driving him to the hospital. It was spring break, so the ER was not busy. It still took a couple of hours to be seen and treated.   [5:25] The doctors assessed him. They gave him medicine to induce vomiting. About 12 hours after the initial choking, his impaction cleared. They kept him overnight and gave him an endoscopy in the morning to check his esophagus and take biopsies.   [6:31] Phil was in the ER for four to six hours before anyone told him what they thought he had. Then the ER doctor told him he was 95% certain Phil had eosinophilic esophagitis. Phil had never heard of it.   [7:04] The ER doctor gave Phil a rundown of EoE. He said Phil would have an endoscopy, and then he would be referred to a GI and set up for treatment. The doctor said he couldn't confirm it before the endoscopy, but he thought it was EoE.   [7:31] Ryan says he's talked to people who have had months-long processes of getting their diagnosis. Phil gives all the credit to the hospital. He was fortunate that his experience was good.   [7:55] Phil says that the staff at the ER and the GI specialist were so knowledgeable about the research and where things were going in this area of medicine. They were very confident about the diagnosis and treatment plan.   [8:11] Dr. Arcenaux gives a shout-out to his GI. He spent well over an hour with him during his initial consult. He explained how EoE would impact him, from diet, grocery shopping, and challenges eating at restaurants, because of cross-contamination.   [8:42] The GI specialist talked him through impacts on dating and dining out  and how to approach social activities.   [9:09] Phil's GI specialist talked to him about employers. He would need employers with health insurance that will cover the endoscopies and treatments for EoE. Phil appreciated the initial onboarding for his EoE diagnosis.   [9:41] Ryan says he needs to discuss this with Phil, as he just finished his Ph.D. a few months ago, and he's looking at insurance for his new job, and how to figure out business lunches.   [9:51] Ryan says Ph.D. students are so motivated by free food. As someone with EoE, that never applied to him. Ryan says shifting from normal eating habits to an EoE diet is a major shift.   [10:27] Phil knows now that there were signs and symptoms, but he had no idea about them before his diagnosis.   [10:33] Phil is on a special diet for his EoE. When he's not great at avoiding his trigger foods, he starts to see dysphagia symptoms in his swallowing, and he has quite a bit of regurgitation. He had been seeing that for months before this initial major food impaction and ER visit.   [10:54] Phil had no idea what was going on. He just thought it was weird that he was regurgitating more than he used to. Sometimes food didn't go down well. Once or twice, he had a small aspiration event. He thought he needed to chew better.   [11:11] He didn't know what those symptoms meant, and he wrote them off. None of it made sense until that diagnosis. Even then, it took a while to wrap his head around it. Years removed, he sees there were so many signs and symptoms he never processed.   [11:28] Holly asks what Phil means by aspiration. He says he means water going down his windpipe, making it hard to breathe, with liquid in his lungs. Holly says that aspiration can be caused by inflammation in people who have EoE.   [12:07] Holly says people with EoE can be sent for a swallow study to look at the anatomy of their swallow function. That's a subject for another episode!   [12:35] Ryan says Phil noticed he was regurgitating more than normal and remarks that people with chronic illnesses don't realize that most people don't normally regurgitate at all. It's a sign that something's wrong.   [13:03] The ER doctor didn't offer Phil any other diagnosis than EoE. The doctor was 95% sure he had EoE, but confirmed it with an endoscopy.   [13:20] Holly asks Phil what food allergies he has. As an infant, he had an egg allergy that limited his vaccines. Now he knows his primary allergen is egg, and it led to his EoE issues.   [13:51] When Phil started his Ph.D. program, he wanted to eat healthier foods. He cut out fast food, and he ate more eggs. He consumed many eggs during his Ph.D. program. A snack was scrambled eggs or something with scrambled eggs.   [14:22] Phil went through a carton of 18 eggs in less than a week. He knew that when he was younger, he'd had egg sensitivity, but as an adult, he'd eaten eggs and nothing happened that registered as an issue. He thought he had outgrown it.   [14:40] Phil says he had outgrown other food allergies. He assumed eggs were fine, so he adopted a heavy egg diet to increase his protein intake and be healthier. Then all these symptoms manifested.   [15:00] Phil never associated the symptoms with eggs. His treatment plan is dieting and minimizing egg as much as possible. That is not easy in the United States, where everything is processed and often contains egg.   [15:19] Holly says she has seen an influx of adult-onset EoE patients with a history of a dairy or egg allergy who were putting cottage cheese and eggs in everything, and all of a sudden, started having regurgitation and food getting stuck.   [15:51] Phil doesn't eat scrambled eggs anymore. One slice of a cake with eggs in it will not send him to the ER. It takes a couple of days of high exposure to reach that point. He knows what he can have daily that will not impact him in the long term.   [16:20] Holly and Ryan agree that it's important to know your limits, and consult with your physicians about foods. Rice is a trigger for Ryan, but if brown rice syrup is about the 20th ingredient, he can have it and be fine. If he were to eat a lot of rice, he will have issues. [17:21] Phil says he recently got married, and his wife is a health nut. She has radically changed his diet. They eat very high-protein, low-fat, and low-carb. It's been easy to manage that without eggs. They eat a lot of chicken, turkey, and fish.   [17:41] Being from Louisiana, Phil says if he had to give up seafood, he doesn't know what he would do. He's a huge craft beer lover. If he had to give up gluten, he doesn't know what he would do. He can manage without eggs.   [18:21] Ryan says dairy was a big trigger for him when he was younger, but now he's on dupilumab, a biologic approved for treating EoE, and that's helped him a lot. He's started to integrate whey protein and milk protein back into his diet.   [18:47] Phil says once he finished with school, he graduated and lost health insurance. He didn't have a source of income or health insurance, so he declined to have dilation therapy. That's also why he deferred to dietary therapy. He removed his allergens one by one.   [19:12] Phil was diagnosed in 2019, not long before the pandemic hit. He lived in a bubble for two to three years and kept to a very regimented

    31 Min.

  3. 14. Mai

    Clinical Trials

    Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Dr. Chukwuemeka Oko, MD, MBA, on clinical trials. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:49] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:13] Holly introduces today's topic — clinical trials — and today's guest, Dr. Chukwuemeka Oko, a Clinical Research and Medical Affairs Professional supporting Duke University Hospital's Department of Gastroenterology and Transplant Hepatology.   [1:33] Dr. Oko explains that he is sharing general, educational information from his perspective and experience, not speaking on behalf of Duke University, nor any industry sponsor, nor any company he has worked for.   [1:50] Dr. Oko's goal today is to help the listeners feel clearer, more confident, and more in control when they are thinking about clinical research.   [2:29] Dr. Oko's work sits mainly at the intersection of clinical research and medical affairs. He helps translate evolving science into practical, patient-centered decisions.   [2:40] From an academic standpoint, he supports clinical trials and evidence generation from feasibility through education.   [2:49] Dr. Oko also engages investigators and thought leaders from industry sponsors in scientific exchanges that lead to insights, study design, and real-world care pathways.   [3:03] Dr. Oko had two reasons to study eosinophilic esophagitis and eosinophilic disease. The first is the patient journey and biology.   [3:11] On the patient side, many people spend a long time seeking answers. Sometimes they feel dismissed before they get a clear diagnosis and a plan that fits their life.   [3:24] On the biology side, eosinophilic disease teaches us a lot about how our immune signals can drive information differently across tissues like the esophagus and airways.   [3:40] Dr. Oko supported an EoE study experience with an industry sponsor in the past. The best research doesn't just test; it helps patients and clinicians make clearer decisions.   [4:12] Dr. Oko explains that a clinical trial is a carefully designed, carefully crafted study in people that answers specific medical questions, most often about safety, effectiveness, or dosing of the study drug or how a treatment should be used.   [4:32] A key structure of a study is a written protocol where safety monitoring is in place, and the defined outcome or results are very reliable. The FDA always oversees clinical trials in the U.S.    [4:44] Dr. Oko often describes a trial as a highly-monitored learning system. It's how medicine moves from "We think this might help" to "We know what helps, for whom, and also at what risk."   [5:09] Dr. Oko says clinical trials usually study what improves patient outcomes, for whom, and at what risk, using methods that we can trust. Trials may evaluate new medicines, devices, dosage strategies, or even procedures.   [5:31] Clinical trials can also study non-drug approaches such as diet interventions, symptom tracking, monitoring tools, and education strategies.   [5:44] Many trials have also included biomarkers, or signals in the blood or tissue, helping to support an EoE diagnosis so that the patients can get treated in an early and effective manner.   [6:36] Dr. Oko says patients sometimes ask him if they are guinea pigs. In reality, trials are heavily regulated and closely monitored, with strict safety reporting requirements. Participants are not guinea pigs.   [7:06] Dr. Oko also hears patients ask if they are "stuck" once they join the clinical trial. No, a trial is a completely voluntary participation, and they can withdraw at any time.   [7:25] Other patients ask if trials are only for people who are out of options. Many trials are designed for earlier stages, especially when the goal is to prevent complications or reduce steroid exposure.   [7:46] The last question Dr. Oko hears a lot is "Will I be in the placebo group?" He says it's an understandable fear. They are asking if they will go untreated in the placebo group.   [8:29] In many trials, a placebo is not the same as "no care". Often, the participants continue the standard-of-care treatment, and the study drug or placebo is added to the standard-of-care treatment.   [8:45] Trials typically involve symptom monitoring and a plan for what happens if the symptoms worsen. There are exit criteria.   [9:01] From the pharmaceutical side, it's the end of treatment once you decide to voluntarily exit the study.   [9:10] Dr. Oko's advice is, if you participate, ask the study team physicians to explain in plain language what you'll receive, what you can continue, and what happens if you flare up. Clear answers are always a part of ethical research.   [10:33] Holly asks what it means to participate in a Phase 1, Phase 2, or Phase 3 trial. Dr. Oko says a Phase 1 trial is focused mostly on the safety and the dosing regimen. It's usually a small group of five to 100 or so.   [10:52] A Phase 2 trial always looks for the drug's effectiveness and continues monitoring safety. It's usually a group of 100 to 300 subjects. They look for meaningful signals of the outcomes derived from the trial.   [11:10] A Phase 3 trial is usually large. It's multi-centered. It's called a complementary study. It involves thousands of patients. It can even be across nations and states.   [11:26] This is where they compare new interventions against a placebo or against a standard of treatment to provide clinical benefits and support for regulatory approval.    [12:03] Participating in any phase of a trial includes fitting the eligibility criteria of inclusion for that particular phase. If you are a good match, you can be in either a Phase 1, Phase 2, or Phase 3 trial.   [12:52] Holly says she knows that a lot of people with EoE or EGIDs are very curious about trials and how to participate in them.   [13:00] Ryan says we have a very active patient community, and everyone's looking for ways to get involved in research and new diagnostics or medications to improve their own outcomes and help everyone else.   [13:35] Dr. Oko says the benefits of participating in a clinical trial include access to potentially disease-modifying therapies years before they reach the market.   [13:47] Another benefit is extraordinarily close medical monitoring. When you're in a clinical trial, you have more frequent visits and more frequent labs than usual.   [14:01] Endoscopies are out of the normal standard of care, but will be more frequent than normal to analyze the efficacy of the study drug.   [14:11] Dr. Oko says one of the risks is the unknown side effects the study drug comes with, because we are still understanding the biology.   [14:21] The time commitment for visits can be more than typical for a patient, especially if there is a long travel time involved. Patients may arrive at 7:00 or 8:00 a.m. They may need to find a place to live nearby, depending on the pace of the trial.   [14:57] Holly lives in Maine, and a lot of the trials are in Boston. It's a lot of travel. For people with any kind of chronic illness, all we think about is money. Holly asks if people pay to be part of a clinical trial.   [15:25] Dr. Oko states that the patients do not have to pay anything to be part of a clinical trial. Patients do get compensated by the trial sponsor for travel, accommodation, parking, and a meal for the days they are onsite.   [16:33] Dr. Oko says that patients tend to bring up insurance. It is a misconception that the study will pay for their standard-of-care medication during the study. Patients need to ask the study team what insurance will pay for and what the study will pay for.   [16:59] Dr. Oko says the insurance usually covers the regular standard-of-treatment, but any other additional treatment, procedures, and visits are all covered by the study sponsor.    [17:29] The study sponsor may ask for an endoscopy to be done six months before the study to determine eligibility for the study. If it is done within a year, the study sponsor will determine if you are qualified. That is part of the eligibility criteria in some cases.   [18:26] Dr. Oko tells patients to always ask questions, like what the schedule of events is in the clinical trial.   [18:35] The schedule of events tells you how many visits are required for you to be part of this study. They will list the activities to be done. They will list the labs you will need at what week. They will list when you need endoscopies, at week one and later.   [19:05] If you exit from the study, if you don't want to participate anymore, you are still required to come on site just to make sure that you are in good shape. Those are called formal visits.   [10:29] Dr. Oko explains that formal visits are necessary for the patient's safety and to make sure that the data points collected in the study will be effective.   [20:01] Patients enrolling in a clinical trial can also ask about the known risks of the symptom monitoring plan. They can ask what is covered and what is not covered by insurance, and what will be considered out of pocket.   [20:20] If patients are in the placebo group, what will happen if sympto

    31 Min.

  4. 31. März

    Social Vulnerability and EoE

    Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Angelica Lackey Mirzoca, MPH, about her research on social vulnerability and EoE. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:51] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:13] Holly introduces today's topic — research on social vulnerability and eosinophilic esophagitis (EoE) — and today's guest, Angelica Lackey Mirzoca, a fourth-year medical student at the University of North Carolina School of Medicine in Chapel Hill.   [1:38] Angelica will start an internal medicine residency this summer and is planning to do a fellowship in GI and liver disease. Before medical school, she studied public health nutrition at UNC and worked in clinical research in eosinophilic diseases.   [1:58] Angelica has been able to use her analytic and public health skills as a member of UNC's EoE Research Group, which is part of the larger Center for Esophageal Diseases and Swallowing, led by Dr. Evan Dellon.   [2:15] Ryan sees Dr. Dellon as his GI. Dr. Dellon has been a guest on the Real Talk: Eosinophilic Diseases podcast. Ryan says Dr. Dellon is wonderful, and many in the community look up to him. It's exciting that Angelica is doing research alongside him.   [2:38] Dr. Craig Reed, part of the EoE Group, who works closely with Dr. Dellon, invited Angelica to a research meeting. She's always had an interest in digestive tract function and diseases.   [2:55] When Angelica was growing up, her father had Barrett's Esophagus. She saw him choking a lot when he was swallowing. It was really scary.   [3:04] Angelica says that being in the EoE space and appreciating the impact that problems swallowing have, not only on the patient's everyday life but on the people around the patient, it was important to her to dedicate her skills and time to EoE.   [3:37] Angelica researched EoE and social vulnerability. Her abstract at the 2025 Digestive Diseases Week was titled "Increasing Social Vulnerability Impacts Presentation and Decreases Treatment Response in Eosinophilic Esophagitis."   [3:58] Angelica explains that social vulnerability is a term to describe the context of people's day-to-day lives and the barriers and obstacles they navigate.   [4:07] In this context, their lived experience has a dramatic impact on people's ability to anticipate and recover from different stressors.   [4:16] Some groups are notably more vulnerable, including kids, older adults, single-parent households, and people who live with physical and mental disabilities.   [4:28] Social vulnerability can be measured qualitatively in terms of socio-economic status and household composition. Other composite scores or variables can serve as quantitative assessments of social vulnerability.   [4:50] Ryan says he does research for graduate school associated with climate vulnerability and infrastructure. He has done some work with the CDC's Social Vulnerability Index and the Climate and Environmental Justice Screening Tool.   [5:20] Angelica says they used the CDC's Social Vulnerability Index in the study. It's a 16-variable composite score with four overarching themes. It's down to the Census Track level. You can associate it with patient zip codes.   [5:37] The SVI can populate into patient charts or a QI database. It was very easy to incorporate into the database.   [5:50] The QI database was developed to help people understand what neighborhoods and communities might need additional support in natural disasters. It includes variables that impact people's health day-to-day.    [6:18] Angelica says health equity is core to everything she does. Participating in the EoE research, it was important to her to consider the social vulnerability, or people's lived reality, and how it impacts their ability to feel empowered to access care.   [6:42] Angelica talks about people not knowing what's wrong with them, choking. Angelica worked in restaurants for 12 years before going to medical school. She listened to a lot of people share their struggles to communicate with the doctors.   [7:09] Holly says when she worked at a major children's hospital in an EoE clinic, they had local patient families and patients that flew in from farther away. The local patients got to see her weekly for feeding therapy. That's when she started doing telehealth.   [8:04] Angelica says the biggest strength of the database is its size. Having 1,400 people and adding every new diagnosis they get at UNC, and every new diagnosis over the past 23 years.   [8:25] There are adult (60%) and child (40%) patients in the database. There is also a good range of social vulnerability among the patients.   [8:42] Ryan notes that one of the findings of this research was that people with higher social vulnerability often experience delays in diagnosis.    [8:52] Angelica says most of the work was postulating on what could be the things that kept people from being diagnosed early, which is important. Angelica hopes that all institutions work to ensure that early endoscopies and biopsies are done.   [9:!2] The new guidelines help. Having that high index of suspicion for everyone, not basing it on demographics or judging by appearance, for whether someone needs biopsies or not.   [9:28] Social vulnerability includes access to care, getting endoscopies and biopsies, having health insurance, and ER care, which is expensive even with insurance. Specialty copays are expensive. Transportation is expensive.   [9:53] Taking time off work can be hard. People take time off to get care for their children, but often not for themselves.   [10:18] Ryan was diagnosed in 2002. Knowledge of EoE was not widespread, but his parents took off work and took him to doctors out of state. They had insurance that covered it. He saw five or six physicians in multiple states before he got a diagnosis.   [10:42] Ryan's situation is not feasible for most people. He says he is fortunate to have gotten to a doctor who had the expertise to diagnose EoE.   [10:51] Ryan says Dr. Emily McGowan was a guest on the Real Talk: Eosinophilic Diseases podcast (Episode 15), speaking on access to specialty care for EoE. She had researched urban and rural populations getting diagnosed with EoE.   [11:05] Her research showed that if you're near a center that can diagnose you, you get diagnosed more frequently, which brings it back to access to care.   [11:19] Angelica's research did not look at the urban/rural divide. That's something that may be a future direction of research. Eighty percent of North Carolina, where the study was located, is rural.   [11:41] The Social Vulnerability Index shows there is the highest vulnerability in more rural areas, especially Eastern North Carolina. Angelica imagines that the urban/rural divide plays a big role.   [11:59] Holly grew up in rural New York. She wasn't diagnosed until her twenties. She had issues, but her parents couldn't take her to be diagnosed. It's reassuring to have someone look into this, because when people do research, things change.   [12:30] Ryan says all of these points make a lot of sense on the diagnostic side. If you are in a more socially vulnerable place, you don't have the resources. You can't go and get that diagnosis.   [12:41] Ryan mentions the study found a difference in symptoms, such as vomiting, nausea, and abdominal pain. Ryan asks what that tells us about how EoE may affect patients differently in these different circumstances.   [12:53] Angelica says the study group was 40% children, and children can present with different symptoms, like belly pain and regurgitation. They're eating different foods and may not be noticing solid foods getting stuck as often.   [13:20] Anglica says there can be a lot of overlap with GERD and EoE. There may be some gut-brain interaction. There's a lot of psycho-social stress among people who have higher social vulnerability. That often manifests with the motility of the GI tract.   [13:56] Angelica says their database doesn't include people who have eosinophilic GI diseases outside of EoE.   [14:13] Holly says the study also showed that patients with higher social vulnerability were less likely to respond to swallowed steroid treatments, even after accounting for factors like age and insurance. Holly asks Angelica to explain this finding.   [14:34] Angelica says this is really important. The way you manage EoE is very patient-specific. The new guidelines give jurisdiction to you, as a patient, and your provider in deciding other things.   [14:51] You can choose dietary therapy first, or topical steroids first. People can take PPIs. They used to be required first, but now they are not. Topical steroids, the ones that you swallow, are common. Cutting out foods from your diet can be challenging.   [15:17] Some people don't love the idea of taking medicine daily in their twenties or thirties.   [15:32] The fact that you would start a patient on something and not see a histologic response opens up the door to follow-up questions of why it is not working.   [15:50] Holly says the pattern wasn't shown in people using diet-based treatments and asks what might explain that differenc

    37 Min.

  5. 26. Feb.

    Community Conversation: EoE and Life Transitions

    Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Jessica Grady, a patient advocate living with EoE. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:13] Holly introduces today's topic — eosinophilic esophagitis and life transitions — and today's guest, Jessica Grady, a patient advocate living with EoE.   [1:35] Jessica is a mom who was diagnosed with EoE in her 20s, after years of unexplained symptoms: acid reflux, GERD, food impaction, and anxiety around food. For about six years, Jessica searched for answers while dealing with these issues.   [2:00] Since then, Jessica has tried PPIs, steroids, and two clinical trials. She was always interested in the research, so being part of it has been valuable to her. There's a lot of work involved in clinical trials, and it's not easy.   [2:29] Jessica is managing her condition and has hit her second endoscopy with remission, with dupilumab. That's exciting, after her long journey. It has taught her the importance of advocating for yourself and staying hopeful with a chronic condition.   [3:01] After college, Jessica was going out with friends, and had pain almost like ulcers in her stomach. She thought maybe she was going out too much.   [3:20] One day at lunch, water got stuck. Jessica says it was like gargling; it wouldn't go down. Finally, it went down, and she took a bite of food, and that got stuck. That was her first episode. After that, Jessica has had food impactions as her main symptom.   [3:54] Jessica says it's quite a reality check when you're choking on water. How is that even possible? Once that happened, Jessica kicked herself into gear and had an endoscopy.   [4:12] Food impaction is Jessica's number one symptom. She has been to dinners where it happened, and she calmly excused herself from the table until she could finally get the food to go down.   [4:34] As Jessica aged, her food impactions started getting longer. That was terrifying, especially as a Mom needing to take care of her baby.   [4:52] Holly shares how she had symptoms from infancy and all the way through her childhood, and it was diagnosed as anxiety, until she started working in an EoE clinic and recognized her symptoms. Getting an EoE diagnosis is often very challenging.   [5:40] Jessica went to three different hospitals in her area. She didn't know what kind of doctor to look for. She went to a GI, got an endoscopy, and woke up with a fat lip. The doctor told her not to have caffeine and start on PPIs.   [6:11] There was no mention of a biopsy or EoE. She was told she had bad acid reflux and ulcers.   [6:35] The PPIs didn't help. She still had acid reflux and impactions. She was still uncomfortable.   [6:47] Jessica switched to another healthcare system and got closer to the answer, with more endoscopies and testing, but there was no research with it.   [7:02] Finally, Jessica switched to where she is today. There is a doctor and research. They run clinical trials. She gets the latest and greatest updates. She feels like it has helped her get to where she is today.   [7:21] Jessica said the doctor knew what to look for. The moment she described her symptoms, the doctor said it would need to be confirmed with a biopsy, but she has EoE. Jessica asked what now?    [7:34] Ryan says, we hear a lot of difficulty with diagnosis because not all doctors know what to look for. If they see ulcers or other common symptoms that people with EoE have, they can very easily misdiagnose. It's a tricky diagnosis to make.   [8:03] Jessica says that before her EoE diagnosis, doctors told her she had GERD, acid reflux, ulcers, and anxiety around food. They asked what her food choices were and if she was taking too big bites.   [8:12] Jessica asked the doctors why she always needs to have a bottle of water with her, and why she feels panic if there's something like a soft pretzel. They told her she was hyperactive and had anxiety. Jessica felt that that was not making sense.   [8:40] That is why Jessica feels it is so important to advocate. There's a lot of time involved when you're misdiagnosed. You get your hopes up and have lots of highs and lows. It's exhausting.   [8:53] Ryan says that when you do get diagnosed, you can start to treat the underlying condition properly, make progress, feel better, and feel like you're being listened to.   [9:30] Jessica's current course of treatment is PPIs and dupilumab. She's learned her food triggers. Being on the biologic means she doesn't have to worry as much about her triggers, but they can still cause symptoms. She doesn't eat nuts or pineapple.   [10:16] Jessica used to eat cottage cheese if she had acid reflux, but now she knows dairy is one of the worst things to have. She does her best to be mindful. She's really thankful that she's in remission now and can be like everyone else at the dinner table.   [11:04] Holly mentions that there are many trigger foods. It's patient-dependent. Dairy is the number one trigger, but we all have different little triggers, like pineapple. Holly's EoE is triggered by any melon. Ryan's EoE is triggered by apples and rice.   [11:48] Holly avoids all trigger foods for fear of an impaction or throwing up.   [12:27] Jessica says, if she wants to have an ice cream cone and live her life like everyone else, she will, but then she has guilt and wonders if it will do something to her later. She limits the high-allergy foods. If she has ice cream, she won't have cheese.   [13:06] Jessica monitors her food as much as possible. Her GI tells her that, since she's in remission, she doesn't need to be that careful. But she has anxiety because you never know if she will have a problem.   [14:21] Jessica's GI had told her that she was only allergic to a few nuts and she could try other kinds of nuts. She tried cashews once and had a reaction. She reported it to her GI, and then he told her to avoid all nuts.   [14:47] Jessica recently went to her allergist to be retested for common allergies. The tests came back negative for every allergy. She doesn't know if that was because of being on the biologic treatment.   [16:01] Jessica's profession is clinical trial technology. That helped her to understand what a clinical trial is, how to enroll, and patient recruitment. When she went to a hospital with GI research, she asked about it. They had openings, and she enrolled.   [16:33] Jessica was interested in clinical trials because she was desperate for options and answers. Also, the cost of endoscopies adds up. Clinical trials are free. Sometimes you get paid. That was a big win for Jessica.   [17:09] When there was an option for a new treatment, she jumped at it both times. She participated in two trials. She didn't make it through them.   [17:21] In the first trial, Jessica's biopsies had two out of three criteria the trial was looking for, although she had active EoE.   [17:33] In the second trial, Jessica had a provision device she used to write a daily diary entry in. She was pretty far in, but then she had tech issues and emailed for help. That's not part of the protocol. If your diary is not logged correctly, you are out of the trial.   [17:57] That trial was an oral medication. She doesn't know if she was on the placebo or not. Jessica is always open to trials. She thinks they are very beneficial.   [18:46] After leaving the first trial, when Jessica's biopsies didn't meet the criteria, Jessica asked the clinical research nurse to keep her in mind for future trials, so she learned of the second trial.    [19:07] Jessica says she put a lot of time and effort into the second trial, with check-ins and multiple endoscopies, until she was dropped from it. It was challenging and very disappointing when she was dropped from the second trial. She was hopeful.   [19:40] At that point, Jessica changed course and started corticosteroid treatment. The inhaler didn't work. Then she did the slurry mix, and that didn't work, and then she did the injections.   [20:09] Ryan notes that Real Talk has talked to many researchers who have run clinical trials. Every time, they say they are so grateful for the community volunteering their time.   [20:21] They're very aware that some difficulties and challenges come up. Not all patients can make it to the end of the trial, whether that's on the research side or on the patient side.   [20:34] Ryan says the eosinophilic-associated disorder community, in general, is so willing to volunteer their time and participate in these things, and further research for the overall community. Ryan says it's good to hear that Jesica tried to participate.   [21:01] Jessica says she thinks it's valuable. She recommends that anyone who is interested should look into it, especially if you know you have something that's for the rest of your life. What do you have to lose?   [21:12] Jessica says she has something that can't be cured, so what is she going to do? She wants to be the tester. She wants to find something to help her. She doesn't want to choke anymore.   [21:29] Jessica wasn't a mom when she started in these clinical

    37 Min.

  6. 22. Jan.

    Tips for Understanding Your Medical Bills

    Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Beth Morgan, a medical billing advocate and consultant, on navigating your medical bills. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:51] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:12] Holly introduces today's topic, Medical Billing, and today's guest, Beth Morgan, a medical billing advocate and consultant.   [1:31] Beth says a medical billing consultant is an individual who assists someone with medical bills to make sure that they are accurate and correct, and that they match the medical records, which are notes that the provider makes.   [1:48] The medical billing consultant or advocate can make sure the bills are paid correctly and that the charges are within the reasonable prices for the treatment area.   [2:19] Beth explains how medical insurance covers healthcare costs. It protects the patients and providers from very high expenses. It can also possibly help with the stress of navigating healthcare systems.   [2:36] The goals of medical insurance are to help cover patient costs for treatments, preventive care, and prescriptions. It can also provide resources for telehealth visits or support visits, if needed.   [2:48] With a telehealth visit, you, the patient, have to make sure that your insurance plan covers and allows it. Sometimes, the cost of a telehealth visit can be more than if you were to go to the office.   [3:27] Beth says most people look at what insurance will cost them per month. They fail to look at their yearly deductible, per person or per family, their prescription costs, or what it will cost to see a specialist. They don't consider what therapies will cost them.   [4:08] Beth had a client whose insurance company would only cover in-state providers. If she went out of state, she wouldn't be covered; even an emergency might not be covered. You have to look at the "nitty-gritty" of the policy.   [4:32] Beth says the biggest things are the deductible and copay, or co-insurance. Don't just look at the cost. Most people will take out the $10,000 or $5,000 deductible plans, saying it only costs $75 for the entire family. What does it actually cover?   [5:00] You don't want sudden surprises when you get to the emergency room. You want to know what your copay will be when you go into an emergency room.   [5:11] Holly agrees with Beth and notes that Real Talk listeners have chronic illness. Some have multiple illnesses. When you're selecting insurance plans, those are the things you have to look into.   [5:27] Patients with EoE often need endoscopies and other specialized procedures. Holly asks for tips on how someone can know what an endoscopy or other procedure will potentially cost.   [5:41] Beth says to ask the doctor what the CPT code is. That's the code that describes the treatment. Then look up that CPT code on the insurance company website. They will show an estimated cost for that treatment, for a rough idea of the cost.   [6:10] Keep in mind that it will not tell you what the providers will charge or what the hospital fee will be.   [6:21] Holly says she has EoE and MS. She asks a social worker for the CPT code for every procedure so she has a record to double-check when the bill comes. The CPT code is the key.   [6:50] Holly is a speech pathologist who does feeding therapy. She says to look at your plan to see if therapy is a copay or if it goes toward your deductible. If it goes toward your deductible, it will be very expensive until you meet that deductible.   [7:10] People living with an eosinophilic disorder may find themselves in the ER for a variety of reasons. Holly was there this week with a food impaction. For others, it could be a pain flare or an asthma attack.   [7:26] Holly asks how families can be prepared for medical bills related to emergency care.   [7:40] Beth replies, You also have on that bill the ER doctor and the ambulance fee, including mileage, which must be accurate or rounded up to the next mile. Track the mileage in your car.   [8:43] Who will be transporting you: volunteers from the fire department, a hospital ambulance, or an outside ambulance? Are you going under Basic Life Support or Advanced Life Support?   [9:05] Once you get to the ER, have someone else with you who can advocate for you. Sometimes, staff will bring you forms to sign before they treat you. If you're in a lot of pain, you're not in your right mind to sign those forms; you're only thinking of your pain.   [9:53] Ryan says a friend of his went to his doctor's office for a prescription refill. Typically, he pays a $25.00 copay per visit. This prescription refill visit was not covered in the same way as other visits, and he received a bill for over $200. The insurance company only covers maintenance appointments.   [10:48] Beth says an Explanation of Benefits (EOB) comes from your insurance company. It shows what the doctor charged, what the insurance company paid, and what you owe.   [11:07] A medical bill is what your provider sends you. Beth always asks the provider to send the bill after the insurance company has paid. That way, you know the insurance company has paid on the bill, and there are no surprises.   [11:25] When the provider bills you, the insurance company may have paid something on it, or it may have applied the bill toward your deductible or copay.   [11:44] When a patient receives a provider bill, Beth says they can go to a company called FAIR Health to see today's rates of what should be charged. Insurance companies negotiate rates with providers.   [12:04] Beth says that an out-of-network provider of physical therapy can charge, for example, $160 a visit, and you have to pay out-of-pocket. They can send it to your insurance company, and the insurance company may only pay 30% of the charge.   [12:20] Call the insurance company to ask questions about your insurance. Utilize the estimated costs feature on your insurance company's website.   [12:32] Beth says she always keeps the page of her health insurance booklet that shows what a PCP office visit, or outpatient specialist visit, will cost. Most people get the book and toss it out, but that page is very helpful.   [12:53] If you go into the emergency room, you might have a $300 copay just to be seen, but if you ask them to bill you after they bill your insurance company, most places should respect that.   [13:11] Beth says that most of the time, the red flags that she looks for on medical bills are supply items. Most supply items are included in the cost of the hospital visit. She says a surgical hospital visit is like an oil change.   [13:42] Beth compares a surgery to an oil and filter change. When you go in for surgery, the drape they put over you is included. You only pay for the supply items you walk out with.   [15:15] Beth says, If there's something wrong on your medical bill, your insurance rep may not know the answer. Most insurance companies have outsourced their billing questions. Start with the billing department of the hospital.   [15:35] Ask, "Why did you bill me for an X, Y, Z, when I didn't have an X, Y, Z? I had an A, B, C. Can we re-examine this, please?" Another thing is to go back to your provider.    [15:52] The provider can request medical notes, which are part of your patient record, and you can look at them yourself. Beth says, for hospital stays, she always tells people to ask for a completely itemized bill.   [16:12] Holly agrees.   [16:20] Beth says you have to look at the itemized bill. Does something make sense to you? Does it look a little unreasonable? That's easy to see.   [16:26] Ryan says when you call your insurance company, it can be time-consuming to reach the person who can answer your question, but it's important to do so, especially for expensive things like hospital stays. Doctor's office visits can also be expensive.   [16:58] Something else that can be tricky is medications. Especially for those of us with chronic illnesses and the rare diseases that we work with here at APFED, costs can be quite high for some of the medications patients take.   [17:20] Beth says, When you call the insurance company, ask for the name of the person you are talking to. Write down the name, date, and time that you spoke to the person. Ask them for a call reference number, where they are located, and what was discussed so you have record of that information.   [18:04] For medications, you can look up prices through GoodRx or other prescription websites that might give you an estimate of what the possible cost could be.   [18:20] If your provider states on the prescription, Do not substitute or give generics, you might be paying full price. Otherwise, most pharmacies will offer you the generics.   [18:35] Holly asks, If someone feels overwhelmed by billing or insurance issues, where can they go for help? Are there resources that you recommend?   [18:45] Beth says, There is a patient advocate group, with individuals across all 50 states, that will help you with medical bills and advise you on everything else. Your provider's office or the facility also might have someone who could help you.

    22 Min.

  7. 16.12.2025

    HOPE on the Horizon

    Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Fei Li Kuang, MD, PhD, an allergist and immunologist, at Northwestern Medicine, about receiving two APFED HOPE on the Horizon Grants. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:14] Holly introduces today's topic, two APFED HOPE on the Horizon Pilot Grant Projects and today's guest, Fei Li Kuang, MD, PhD, an Assistant Professor in the Division of Allergy and Immunology at Northwestern University Feinberg School of Medicine in Chicago, Illinois.   [1:42] Dr. Kuang is a physician-scientist who takes care of patients with eosinophilic disorders and also performs laboratory research on these disorders in her lab, often using patient samples. Holly thanks Dr. Kuang for joining us.   [2:05] As a child, Dr. Kuang always wanted to be a scientist. She is so grateful to live out her childhood dream, and it's because of the amazing people who have supported her, most importantly, her parents.   [2:29] In graduate school, Dr. Kuang studied B cells. When she went on to do an allergy fellowship, she thought she would study B cells and care for patients with B cell problems. Instead, she fell in love with allergy and eosinophilic disorders.   [2:50] Dr. Kuang is here, in part, because of the different mentors she has had, and in large part, because of the patients she has met along the way.   [3:20] Dr. Kuang had the opportunity to work with Amy Klion at the NIH in a clinical trial to treat patients with a drug that gets rid of eosinophils. She says it was a dream come true after her training.   [4:02] She says she learned so much about eosinophils, their unusual biology, and the mystery behind what they are here for. She got hooked.   [4:15] Dr. Kuang thinks the patients you meet in a clinical trial in a special place like NIH occupy a space in your heart that makes you want to keep working on the subject area.   [4:34] Patients in a clinical trial have given up a bunch of their time to travel to Bethesda, Maryland. For the trial Dr. Kuang participated in as a Fellow, it was a good year of their time to come out and do it.   [4:47] Dr. Kuang felt there were so many interesting questions, from an intellectual point of view, but there was also a real need from patients with chronic conditions. It was a beautiful opportunity to marry scientists with physicians in training.   [5:36] Dr. Kuang shares some knowledge about eosinophils. They are white blood cells that are in all of us. They have little pink packages or granules that "jumped out" in the light microscope almost 200 years ago, when we first identified them.   [6:00] Dr. Kuang says that animals, dating back to reptiles, and different species of dolphins, all have eosinophils. A veterinary scientist, Dr. Nicole Stacy of the University of Florida, has taken photos of eosinophils from all these different species.   [6:21] They've been around for a long time. What are they good for? What we know is that they are associated with disease conditions, such as asthma and others, including leukemia. Those were the classic first studies of eosinophils.   [6:42] Now, we have a different mindset about eosinophils from work by the late James Lee at Mayo Clinic, Arizona.   [6:58] Dr. Kuang credits Dr. Lee with suggesting that eosinophils not just cause us problems but also help treat parasitic infections, maintain tissue homeostasis, help wound healing, and tissue repair. That's a new area we are beginning to appreciate.   [7:41] Dr. Kuang says we need to be open-minded that in some circumstances, eosinophils may be helpful or innocent. Now we have tools to start to understand some of that. We need to collect information from patients being treated with medicines.   [8:10] Ryan tells of being diagnosed as a kid. Doctors explained to him that eosinophils fight parasites, but in some people, they get confused and attack the esophagus. That's EoE. That was easy to understand, but he knew that the researchers knew more.   [8:53] Ryan is grateful to the patient population around eosinophilic esophagitis, and is proud of APFED's support of patients and caregivers with HOPE Grants. APFED has the HOPE on the Horizon Research Program, entirely funded by community donations.   [9:13] To date, APFED has directed more than $2 million toward eosinophilic disease research initiatives through various grant programs. As a patient advocacy organization, APFED works with fantastic researchers who submit innovative research ideas.   [9:32] These research ideas go through an extensive and competitive peer-review process, supported by researchers and clinicians in the APFED community.   [9:42] Today, we're going to discuss two different projects supported by HOPE Pilot Grants with Dr. Kuang.   [10:00] Dr. Kuang thinks there are two ways these grant programs are important to patients. One is advancing research by nurturing seedling investigators. Dr. Kuang got her first grant when she was a Fellow. It was an incredible opportunity.   [10:25] These grant programs also nurture seedling ideas that don't have enough evidence yet to garner the larger NIH grants, and so forth. There are other sources for grants: pharmaceutical companies. The grant programs are for seeds.   [10:49] Patients need to know that there are new things that are given some chance of being tested out. Research takes some time, and the FDA process of getting a drug approved is long.   [11:04] For the newly diagnosed patient, it can feel overwhelming. It feels like there's a loss of control. Sometimes, participating in something like APFED, being part of a community, gives back a sense of control that is lost when you're handed a diagnosis.   [11:45] For patients who have had it for a long time, when they participate in research and become engaged in organizations like APFED, they know they may not directly benefit today, they may benefit later, but they hope future patients will benefit.   [12:21] That gives them a sense of control and hope that things will be better for the next generation. We all want that, especially in medicine, in something that we don't have a very deep understanding of.   [12:58] Dr. Kuang received two HOPE Pilot Grants, one in 2018 and one in 2022. The first grant was awarded when she was a Fellow at the NIH.   [13:05] That first grant explored some effects of eosinophilic depletion of pathogenic lymphocytes in hypereosinophilic syndrome and overlaps with EGIDs. Ryan asks for a broad overview of that research.   [13:25] When Dr. Kuang was a Fellow at the NIH, they were doing a Phase 2 clinical trial, looking at "blowing up" eosinophils in patients who have a lot of them, hypereosinophilic syndrome patients.   [13:39] They included patients who had eosinophilic GI disease, often beyond the esophagus. They may have esophageal involvement, but sometimes their stomach is impacted, sometimes their large bowel is impacted, with related symptoms.   [13:57] What Dr. Kuang and the team noticed in the trial was that just within that little group of patients, there were people who did well, and people who did much better than before, but would have recurrent symptoms, and with no eosinophils in their GI tissues.    [14:16] The researchers wanted to know what was causing these problems for the patient. If you take eosinophils away, what other factors will impact the immune system of the patient, semi-long-term?   [14:32] Their focus was on these groups of patients who had different responses. They looked at the white blood cells that had been previously described as being the responsible, "bad" T cells that lead to eosinophils in the gut.   [14:49] They found that the patients who had recurrent flares of the disease had more of the bad T cells, and the patients who responded well and never complained again about symptoms did not.   [15:03] That allowed researchers to identify that there were subsets of patients with the disease that they were calling the same thing.   [15:18] Dr. Kuang says that work also led them to find that those cells were being reported in patients who had food allergies for which they needed an epinephrine auto-injector.   [15:27] The researchers were curious whether that was just a food allergy issue, or only applied if you had food allergies and eosinophilic GI disease. That HOPE project allowed them to do a pilot study to look at food allergy patients, too. They did, and published it.   [15:45] They published that in patients who have a food allergy and have these T cells, the insides of those cells make different messages for the immune system than the ones that the researchers had previously described.   [16:01] In looking for why there were differences in those responses, they accidentally found that there were differences inside these cells in a completely different disease, which also had these T cells.   [16:21] Dr. Kuang says that the finding was kind of a surprise. If they had found anything in the eosinophilic GI disease patients, that would have been good. They also looked at the epithelial cells and the structure of the GI lining.   [16:4

    56 Min.

  8. 19.11.2025

    Predictors of not using medication for EoE

    Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Evan S. Dellon, MD, and Elizabeth T. Jensen, PhD, about a paper they published on predictors of patients receiving no medication for treatment of eosinophilic esophagitis. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:52] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:14] Holly introduces today's topic, predictors of not using medication for EoE, and today's guests, Dr. Evan Dellon and Dr. Elizabeth Jensen.   [1:29] Dr. Dellon is an Adjunct Professor of Epidemiology at the University of North Carolina School of Medicine in Chapel Hill. He is also the Director of the UNC Center for Esophageal Diseases and Swallowing.   [1:42] Dr. Dellon's main research interest is in the epidemiology, pathogenesis, diagnosis, treatment, and outcomes of eosinophilic esophagitis (EoE) and eosinophilic GI diseases (EGIDs).   [1:55] Dr. Jensen is a Professor of Epidemiology with a specific expertise in reproductive, perinatal, and pediatric epidemiology. She has appointments at both Wake Forest University School of Medicine and the University of North Carolina at Chapel Hill.   [2:07] Her research primarily focuses on etiologic factors in the development of pediatric immune-mediated chronic diseases, including understanding factors contributing to disparities in health outcomes.   [2:19] Both Dr. Dellon and Dr. Jensen also serve on the Steering Committee for EGID Partners Registry.   [2:24] Ryan thanks Dr. Dellon and Dr. Jensen for joining the podcast today.   [2:29] Dr. Dellon was the first guest on this podcast. It is wonderful to have him back for the 50th episode! Dr. Dellon is one of Ryan's GI specialists. Ryan recently went to North Carolina to get a scope with him.   [3:03] Dr. Dellon is an adult gastroenterologist at the University of North Carolina at Chapel Hill. He directs the Center for Esophageal Diseases and Swallowing. Clinically and research-wise, he is focused on EoE and other eosinophilic GI diseases.   [3:19] His research interests span the entire field, from epidemiology, diagnosis, biomarkers, risk factors, outcomes, and a lot of work, more recently, on treatments.   [3:33] Dr. Jensen has been on the podcast before, on Episode 27. Holly invites Dr. Jensen to tell the listeners more about herself and her work with eosinophilic diseases.   [3:46] Dr. Jensen has been working on eosinophilic gastrointestinal diseases for about 15 years. She started some of the early work around understanding possible risk factors for the development of disease.   [4:04] She has gone on to support lots of other research projects, including some with Dr. Dellon, where they're looking at gene-environment interactions in relation to developing EoE.   [4:15] She is also looking at reproductive factors as they relate to EoE, disparities in diagnosis, and more. It's been an exciting research trajectory, starting with what we knew very little about and building to an increasing understanding of why EoE develops.   [5:00] Dr. Dellon explains that EoE stands for eosinophilic esophagitis, a chronic allergic condition of the esophagus.   [5:08] You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don't grow out of EoE, like they might grow out of eczema or asthma. When people have EoE, it is a long-term condition.   [5:24] Eosinophils are a type of white blood cell, specializing in allergy responses. Normally, they are not in the esophagus. When we see them there, we worry about an allergic process. When that happens, that's EoE.   [5:40] Over time, the inflammation seen in EoE and other allergic cell activity causes swelling and irritation in the esophagus. Early on, this often leads to a range of upper GI symptoms — including poor growth or failure to thrive in young children, abdominal pain, nausea, and symptoms that can mimic reflux.   [5:58] In older kids, symptoms are more about trouble swallowing. That's because the swelling that happens initially, over time, may turn into scar tissue. So the esophagus can narrow and cause swallowing symptoms like food impaction.   [6:16] Ryan speaks of living with EoE for decades and trying the full range of treatment options: food elimination, PPIs, steroids, and, more recently, biologics.   [6:36] Dr. Dellon says Ryan's history is a good overview of how EoE is treated. There are two general approaches to treating the underlying condition: using medicines and/or eliminating foods that we think may trigger EoE from the diet.   [6:57] For a lot of people, EoE is a food-triggered allergic condition.   [7:01] The other thing that has to happen in parallel is surveying for scar tissue in the esophagus. If that's present and people have trouble swallowing, sometimes stretching the esophagus is needed through esophageal dilation.   [7:14] There are three categories of medicines used for treatment. Proton pump inhibitors are reflux meds, but they also have an anti-allergy effect in the esophagus.   [7:29] Topical steroids are used to coat the esophagus and produce an anti-inflammatory effect. The FDA has approved a budesonide oral suspension for that.   [7:39] Biologics, which are generally systemic medications, often injectable, can target different allergic factors. Dupilumab is approved now, and there are other biologics that are being researched as potential treatments.   [7:51] Even though EoE is considered an allergic condition, we don't have a test to tell people what they are allergic to. If it's a food allergy, we do an empiric elimination diet because allergy tests aren't accurate enough to tell us what the EoE triggers are.   [8:10] People will eliminate foods that we know are the most common triggers, like milk protein, dairy, wheat, egg, soy, and other top allergens. You can create a diet like that and then have a response to the diet elimination.   [8:31] Dr. Jensen and Dr. Dellon recently published an abstract in the American Journal of Gastroenterology about people with EoE who are not taking any medicine for it. Dr. Jensen calls it a real-world data study, leveraging electronic health record patient data.   [8:51] It gives you an impression of what is actually happening, in terms of treatments for patients, as opposed to a randomized control trial, which is a fairly selected patient population. This is everybody who has been diagnosed, and then what happens with them.   [9:10] Because of that, it gives you a wide spectrum of patients. Some patients are going to be relatively asymptomatic. It may be that we arrived at their diagnosis while working them up for other potential diagnoses.   [9:28] Other patients are going to have rather significant impacts from the disease. We wanted to get an idea of what is actually happening out there with the full breadth of the patient population that is getting diagnosed with EoE.   [9:45] Dr. Jensen was not surprised to learn that there are patients who had no pharmacologic treatment.   [9:58] Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are early in their disease process and still exploring dietary treatment options.   [10:28] Holly sees patients from infancy to geriatrics, and if they're not having symptoms, they wonder why bother treating it.   [10:42] Dr. Jensen says it's a point of debate on the implications of somebody who has the disease and goes untreated. What does that look like long-term? Are they going to develop more of that fibrostenotic pattern in their esophagus without treatment?   [11:07] This is a question we're still trying to answer. There is some suggestion that for some patients who don't manage their disease, we very well may be looking at a food impaction in the future.   [11:19] Dr. Dellon says we know overall for the population of EoE patients, but it's hard to know for a specific patient. We have a bunch of studies now that look at how long people have symptoms before they're diagnosed. There's a wide range.   [11:39] Some people get symptoms and get diagnosed right away. Others might have symptoms for 20 or 30 years that they ignore, or don't have access to healthcare, or the diagnosis is missed.   [11:51] What we see consistently is that people who may be diagnosed within a year or two may only have a 10 or 20% chance of having that stricture and scar tissue in the esophagus, whereas people who go 20 years, it might be 80% or more.   [12:06] It's not everybody who has EoE who might end up with that scar tissue, but certainly, it's suggested that it's a large majority.   [12:16] That's before diagnosis. We have data that shows that after diagnosis, if people go a long time without treatment or without being seen in care, they also have an increasing rate of developing strictures.    [12:29] In general, the idea is yes, you should treat EoE, because on average, people are going to develop scar tissue and more symptoms. For the patient in front of you with EoE but no symptoms, what are the chances it's going to get worse? You don't know.   [13:04] There are two caveats with that. The first is what we mean by s

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Eosinophils are a type of white blood cell that play a role in immune responses and help fight off infections. When these cells build up and cause inflammation in the digestive system, tissues, organs, and/or bloodstream, without a known cause, it may be the result of an eosinophil-associated disease. Join the American Partnership for Eosinophilic Disorders (APFED) for a series of conversations with researchers, clinicians, patients, and other community members as we discuss practical strategies for disease management and treatments, research, and other topics of interest.

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  • Erstellt von
    American Partnership for Eosinophilic Disorders
  • Jahre aktiv
    2021 - 2026
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    58
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    © American Partnership for Eosinophilic Disorders (APFED)
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    Real Talk: Eosinophilic Diseases

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