Real Talk: Eosinophilic Diseases
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...
info_outlineReal Talk: Eosinophilic Diseases
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....
info_outlineReal Talk: Eosinophilic Diseases
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 Dr. Andrew Lee, Vice President, Clinical Research at Uniquity Bio, about (TSLP) and eosinophilic esophagitis (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...
info_outlineReal Talk: Eosinophilic Diseases
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 three high school students who made less invasive EoE diagnostics the focus of a science fair project. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this...
info_outlineReal Talk: Eosinophilic Diseases
Description: 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 Anna Henderson, MD, a pediatric gastroenterologist at Northern Light Health in Maine, about bone mineral density in EoE patients. They discuss a paper she co-authored on the subject. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship that exists between listeners...
info_outlineReal Talk: Eosinophilic Diseases
Description: 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 Bethany Doerfler, MS, RDN, a clinical research dietician specializing in lifestyle management of digestive diseases at Northwestern Medicine. Ryan and Holly discuss managing nutritional deficiencies in patients with non-EoE EGIDs and a study Bethany worked on. Disclaimer: The information provided in this podcast is...
info_outlineReal Talk: Eosinophilic Diseases
Description: 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 Dr. Melanie Ruffner, an Attending Physician with the Division of Allergy and Immunology and the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia. Dr. Ruffner describes her work in clinic and the paper she co-authored about pediatric and adult eosinophilic esophagitis (EoE). She covers...
info_outlineReal Talk: Eosinophilic Diseases
Description: 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 Dr. John Accarino, an allergist and immunologist at Massachusetts General Hospital and Mass General for Children, on the topic of immunology support for eosinophilic esophagitis (EoE). Dr. Accarino shares his experiences as a person living with food allergies, allergic asthma, peanut allergy, and eosinophilic...
info_outlineReal Talk: Eosinophilic Diseases
Description: 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 Dr. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital. Dr. Shreffler is also an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative. His research is focused on understanding how...
info_outlineReal Talk: Eosinophilic Diseases
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 Dr. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children’s Hospital Medical Center. Dr. Collins was a member of the task force that produced the Guidelines on Childhood EGIDs Beyond EoE. In this interview, Dr. Collins discusses the guidelines and how they were...
info_outlineCo-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.
[16:42] Even though there were no eosinophils in the GI lining in the patients who had been treated with a biologic that depleted eosinophils, their GI lining still looked like the GI lining of patients who had eosinophilic GI disease.
[16:55] Dr. Kuang asked what was creating those spots. Our gut lining sheds, so there should have been an opportunity for the GI lining to turn over and look new. Something was there, making signals to create these spots. They did a different publication on that.
[17:21] The data from the HOPE Pilot study allowed Dr. Kuang to apply for larger grants. It allowed her to propose to the company that made this drug, when they did the Phase 3 trial, to insert into that special study the study on eosinophilic GI disease.
[17:48] Do patients with eosinophilic GI disease do better or worse on this drug, and how do the T cells look in that trial? That HOPE Grant gave Dr. Kuang the data to ask the drug company to give her money to study it in an international cohort of patients.
[18:17] There were only 20 patients in that first NIH trial, who gave a year of their life, coming to NIH all the time. They continued to be in the study until the drug was approved for asthma.
[18:28] Dr. Kuang says the main reason the company did the Phase 3 trial, which is expensive, and the market share is not huge because it’s a rare disease, is that two of the patients went to bat for this disease population.
[18:47] The two patients went and showed the business people what they looked like before, what the drug had done for them, and how their lives had changed. It wasn’t the doctors or the great paper from the trial, but the patients who convinced the company.
[19:01] Dr. Kuang says she was so floored by that and moved by what they did for the community. She is grateful.
[19:24] Since the Phase 3 trial, Dr. Kuang and the other researchers realized they had not fully studied the eosinophils. They had studied them in part. They found differences in response. This inspired the second APFED HOPE Pilot Grant.
[21:19] In 2022, Dr. Kuang received a two-year APFED HOPE Pilot Grant to examine how blood eosinophils in Eosinophilic Gastrointestinal Diseases differ from those of other eosinophilic diseases and how T cells in EGIDs differ from those in food allergies.
[21:49] Dr. Kuang says normally, the biggest place of residence for eosinophils is the GI tract. That’s where they are normally seen in people who do not have eosinophilic disorders.
[21:59] People who have eosinophilic disorders that attack other parts of the body, asthma, and rarely, the heart. Dr. Kuang was curious to know why one person and not the other?
[22:15] Patients who have eosinophilic GI disease often ask, How do you know this high level in the blood is not going to attack my heart or my lungs in the future? Dr. Kuang does not know.
[22:29] Dr. Kuang says, looking at the cohort at the NIH, that for many patients who have both GI organ involvement and some other space, when they first went to see a provider, their first complaint was a GI condition.
[22:54] If the doctor had only diagnosed a GI condition, nothing else, that would have been wrong. Those patients may not have been monitored as well. A third of the patients originally presented like that.
[23:11] What that meant was that we should be paying attention to patients who have GI disease who have lots of eosinophils in their blood. Moving forward, if there are new complaints, we need to investigate. We can’t forget they have that.
[23:27] Dr. Kuang asks, Wouldn’t it be great if we had a better tool than needing to wait? Wouldn’t it be great if we had a biomarker that said the eosinophils have switched their target location and are going somewhere else?
[23:41] One way to do that is to take different groups of eosinophils and look for differences between those that never target the GI tract and those that do. In patients who have EoE, the eosinophils only target or cause problems in the esophagus.
[23:58] Are their eosinophils any different than those of a healthy person, with none of these conditions? That was the goal of that study.
[24:10] T cells are another type of white blood cell. They contain a memory of foreign things they have encountered, which allows them to glom onto flu, COVID, peanuts, pollen, that kind of thing. They remember.
[24:32] Dr. Kuang says they learned that T cells, at least in the mouse model, are required in the development of eosinophilic esophagitis. The mice in the old study, where mice were forced to develop EoE, did not get EoE if you removed their T cells.
[24:50] In the first APFED HOPE grant study, Dr. Kuang found T cells in the blood and tissue of both EGIDs and food allergy patients, but the insides of the T cells were different. The food allergy patients were children recruited by a pediatric allergist.
[25:19] In the second APFED HOPE grant study, at Northwestern, Dr. Kuang recruited her adult food allergy patients. That was a way to validate what they found in the first study and move further to better characterize those T cells in the two different diseases.
[25:47] Dr. Kuang says we’re at a point where we’ve recruited a lot of people. She says it’s amazing what people are willing to do. It’s very humbling.
[26:06] Dr. Kuang’s team in the lab is really great, too. To accommodate patients, they would see them after work, if that’s what they had to do to isolate eosinophils. So they did that, and now they are in the process of analyzing that data. It’s really exciting.
[26:28] What’s exciting is that they are seeing results that show that eosinophilic GI disease patients have circulating eosinophils that are different from the eosinophils of people who don’t have GI involvement, and from people who have EoE.
[26:46] The EoE patients have eosinophils different from those of healthy donors. Dr. Kuang says there’s a lot of promise for perhaps unique signatures that could help define these conditions; maybe someday without biopsying, but that’s a long time away.
[27:16] Dr. Kuang says they will focus on some candidate targets and try to recreate some of that in a dish with eosinophils from healthy people.
[27:26] What are the signals that lead eosinophils to do this, and can we translate that back to available drugs that target certain cytokines or other pathways, and maybe give some insight to develop drugs that target other pathways for these diseases?
[28:17] Ryan thinks it’s exciting that this research is narrowing in on not only the different symptoms, but also how the eosinophils are acting differently in these populations.
[28:44] Dr. Kuang is super excited about this research. You could imagine that all eosinophils are the same, but you don’t know until you look. When they looked, using the newest technology, they found there were differences.
[29:33] Dr. Kuang says it is thought that T cells respond to triggers. We don’t think eosinophils have a memory for antigens. T cells do. That’s one of their definitions. When T cells react to a trigger, they give out messages through cytokines or by delivery.
[30:20] Those are the messages that recruit eosinophils and other cells to come and stir up some trouble.
[30:28] In the mouse model, where you don’t have the T cells, and you don’t get eosinophilic esophagitis in the particular way they made it happen in a mouse, that middle messenger is gone, so the eosinophils don’t know where to go.
[30:44] With drugs that take out eosinophils, you think that you’ve gotten rid of the cell that creates all the problems. It shouldn’t matter what the message says because there’s no cell there to cause the damage.
[30:58] What Dr. Kuang learned is that, at least in certain eosinophilic GI diseases, that’s not true. You erase the eosinophils from the picture, but that message is still coming.
[31:10] Who’s carrying out the orders? Or is that message maintaining the wall of epithelial cells in a certain way that we didn’t appreciate because the eosinophils were also there?
[31:24] It’s important to study both, because one is the messenger and the other is one of the actors. Whether all of the actions taken by eosinophils are bad, or maybe some of them were meant to be good, we have yet to learn.
[31:40] At the moment, we’re using it as a marker for disease activity, and that may change in the future, as we learn more about the roles of these cells in the process.
[31:50] We have drugs now that target eosinophils and drugs that target T cells. Dr. Kuang thinks it’s important to study both and to study the impact of these drugs on these cells.
[32:02] You could theoretically use these drugs to understand whether, if someone responds to it, what happens to these cells, and if someone doesn’t respond to it, what happens to these cells, and how this disease manifests in this flavor of patients.
[32:54] Dr. Kuang says, Often in science, we take a model. We think this works this way. Then, if this works this way, we expect that if we remove this, these things should happen. We did that with the first clinical trial, with NIH patients.
[33:10] It didn’t quite happen the way we thought, so we had to go looking for explanations. These were unusual setbacks. Sometimes you have unusual findings, like the food allergy part.
[33:24] When Dr. Kuang went to Northwestern, she saw different cohorts of patients than she saw at NIH. She saw people who were seen every day, which is a different spectrum than those who are selected to be enrolled in a study protocol at the NIH.
[33:42] That broadened her viewpoint. It’s maybe not all food-triggered. They were seeing adults who’d never had food allergies or asthma their whole life, and they had eosinophilic esophagitis suddenly as a 50-year-old. There’s a significant group of them.
[34:10] What Dr. Kuang learned and tries to be open-minded about is that where you train, what sorts of patients you see, really shape your viewpoint and thinking about the disease process and the management process.
[34:24] Dr. Kuang says she was so lucky to have experienced that at a quaternary care referral center like the NIH and at an academic center like Northwestern, where there are fantastic gastroenterologists who see so many of these patients.
[34:56] Dr. Kuang and an Allergy Fellow knew they were going to get a wonderful data set from the NIH patients they had recruited, so they thought they had better look deeply at what had been learned before with older technology, with mice and people.
[35:13] They decided to gather previous research, and that ultimately got published as an article. From that research, they learned that people did things in many different ways because there was no standard. They didn’t know what the standard should be.
[35:28] Different things you do to try to get eosinophils out of tissue impact how they look, in terms of transcript, gene expression, and what messages they make to define themselves as an eosinophil.
[35:43] They also learned that because eosinophils are hard to work with, they die easily, and you can’t freeze them and work on them the next day; you can introduce issues in there that have to be accounted for.
[35:59] They learned that as an eosinophil research community, they ought to come up with some standards so that they can compare future studies with each other. Dr. Kuang says it was impossible to compare the old studies that used different premises.
[36:50] Dr. Kuang says we need to be proactive in creating the datasets in a standard way so that we can compare and have a more fruitful and diverse community of data. It’s hard to use the old data.
[37:57] Dr. Kuang says they get fresh blood from patients, and because eosinophils are finicky, they need to be analyzed within four hours, or preserved in a way to save whatever fragile molecules are to be studied.
[38:19] If you let it sit, it starts dying, so you won’t have as many of them, and they start changing because they’re not in the body. Dr. Kuang experimented with putting a tube of blood on the bench and checking it with the same test every two hours. It changes.
[38:38] Four hours is a standard to prevent the eosinophils from dying. Patients need treatment. If a patient is hospitalized and needs treatment, Dr. Kuang’s team needs to be there to get a sample before treatment is started.
[39:03] The treatment impacts it, changing the situation. Much of the treatment, initially, is steroids. When you give lots of steroids, the eosinophils go away. It’s no good to draw their blood then.
[39:27] Dr. Kuang also gets a urine sample. The granules of the eosinophils can get into the urine. As they study people with active disease, they want to capture granule proteins in the urine as a less invasive way to monitor activity in different disease states.
[40:04] The patient just needs to give Dr. Kuang either arm and a urine sample.
[41:04] Dr. Kuang explains, you can count your eosinophils after four hours, but to study them, they have different flags of different colors and shapes. Those colors and shapes may mean that it’s an activated eosinophil, or they may have other meanings.
[41:41] Dr. Kuang focused on markers that look at whether it’s going to spill its granules and some traditional markers of activation.
[41:50] Everyone chooses a different marker of activation. So they decided to look at as many as they could. One marker is not sufficient. They seem to be different in different conditions. The markers are on the surface; you need to analyze them right away.
[42:20] Then, Dr. Kuang breaks open the eosinophils and grabs the messenger RNA. They preserve it to do sequencing to read out the orders to see what this eosinophil is telling itself to make. RNA chops up messages.
[43:00] When you open an eosinophil, a protein you find is RNA, which chops up messages, destroying parts of the cell. You want to save the message. There’s a brief time to analyze the eosinophil. Dr. Kuang works to preserve and read the message.
[44:04] Dr. Kuang hopes someday to run a tube of blood, look at the flags on the eosinophils, and say, “I think your eosinophilic GI disease is active,” or “You have a kind of eosinophilic GI disease we need to monitor more frequently for organ damage.”
[44:38] If another patient doesn’t have those flags, Dr. Kuang could say, “I think the chances that you’re going to have involvement elsewhere are low.” That can give reassurance to folks who are worried.
[45:15] Dr. Kuang hopes that someday we can understand better why some people have food allergies vs. eosinophilic GI disease. They both have T cells, but the T cells have different packages inside with messages to deliver.
[45:34] Every day, Dr. Kuang has to tell patients she doesn’t have that answer. Someday, she hopes she can tell a patient she does have that answer.
[46:35] Dr. Kuang tells about an NIH grant she’s excited about and the patients she recruits after therapy, or elimination diets, to examine eosinophils and T cells, to see the impacts their treatments or diets have had on eosinophilic GI disease.
[47:18] Dr. Kuang believes there will be predictors of who will respond to an elimination diet and who will respond to steroid therapy. She hopes one day to have that, rather than going through rounds of six to eight weeks followed by a scope.
[47:34] If you have an elimination diet for six to eight weeks, every time you add back a food, you have to do a scope. Dr. Kuang says it would be great if you could be more precise ahead of time for therapy.
[47:48] Dr. Kuang says these wonderful drugs selectively take out parts of the pathway in the immune system. They provide real-life opportunities to ask, why is this important in human biology and the human immune system?
[48:15] Dr. Kuang finds the knowledge itself fascinating and useful. She hopes it informs how we choose future drugs or therapeutic avenues to get the best we can out of what we’ve learned, so we have more targeted ways of treating specific diseases.
[48:48] Ryan is grateful for all the research happening for the eosinophilic disease community and all the patients participating in the research. He asks Dr. Kuang how a patient can participate in research.
[49:12] There are lots of ways to be involved in research. Dr. Kuang says her patients come away from participating in research feeling good about having done it.
[49:22] Answer a survey, if that’s what you have bandwidth for. Where therapies are changing, being a part of a community is good for the community, for the future, but it’s good for you, too. It’s healing in ways that are not steroids or biologics.
[49:58] Being part of a community is healing in ways we all need when we feel alone and bewildered. You’re not alone.
[50:12] There are many ways to participate: APFED, CEGIR, individual institutions, and clinical trials. They all have different amounts of involvement. It’s worthwhile to participate, not only for future patients but for yourself. They’re fantastic!
[50:56] Dr. Kuang talks about the privilege as a physician of working with APFED and other organizations to do this work.
[51:09] Holly thanks Dr. Kuang for sharing all of this research and exciting information.
[51:25] Dr. Kuang is excited about what her group is doing and is hopeful. Besides showing up for this disease, we have to show up for research, in general, in this country. It’s a dark time for NIH research funding.
[51:55] Dr. Kuang asks the young listeners who are thinking of choosing a field to see the potential and get into it, study this, and believe that there’s going to be a future with a more nurturing research environment.
[52:36] Dr. Kuang would hate to lose generations of scientists. She says that once she was a little girl who was trying to be a scientist. Her parents had no connections with scientists or doctors, but she was able to get into research, and she thinks you can, too.
[53:48] As a graduate student, Ryan has always been interested in trying to improve things, and he sees hope on the horizon. He’s very grateful to the APFED community for supporting these research HOPE Pilot Grants.
[54:17] Ryan is very grateful to Dr. Kuang for joining us today.
[54:22] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes.
[54:28] If you’re looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at apfed.org/specialist.
[54:37] If you’d like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at apfed.org/connections.
[54:57] Dr. Kuang thanks Ryan and Holly and says she enjoyed the conversation. Holly also thanks APFED’s Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.
Mentioned in This Episode:
Fei Li Kuang, MD, PhD, Allergist and Immunologist, Northwestern Medicine
Grants and publications discussed: Apfed.org/blog/apfed-announces-2018-hope-apfed-hope-pilot-grant-recipient/
Apfed.org/blog/fei-li-kuang-hope-pilot-grant-award/
Pubmed.ncbi.nlm.nih.gov/39213186/
Pubmed.ncbi.nlm.nih.gov/37487654/
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
apfed.org/research/clinical-trials
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.
Tweetables:
“I think the patients that you meet in a clinical trial, especially in a special place like NIH, occupy a space in your heart — I don’t mean to be all too emotional about this — that makes you want to keep working on the subject area.” — Fei Li Kuang, MD, PhD
“When I was a Fellow at the NIH, we were doing a Phase 2 clinical trial, looking at, for want of a better word, “blowing up” eosinophils in patients who have a lot of them, hypereosinophilic syndrome patients.” — Fei Li Kuang, MD, PhD
“We’re at a point where we’ve recruited a lot of people. I’ve had patients drive from the northern part of Illinois … come down and give me blood. It’s amazing what people want to do and are willing to do. It’s very humbling, actually.” — Fei Li Kuang, MD, PhD
“You erase the eosinophils from the picture, but that message is still coming. Who’s carrying out the orders? Or is that message maintaining the wall of epithelial cells in a certain way that we didn’t appreciate because the eosinophils were also there?” — Fei Li Kuang, MD, PhD
“We need to be proactive in creating the datasets in a standard way so that we can compare and have a more fruitful and diverse community of data.” — Fei Li Kuang, MD, PhD
“I think it’s worthwhile to participate [in a clinical trial], not only for the future people but for yourself.” — Fei Li Kuang, MD, PhD
Guest Bio:
Fei Li Kuang, MD, PhD, is currently an Assistant Professor in the Division of Allergy and Immunology at Northwestern University Feinberg School of Medicine in Chicago, IL. She is a graduate of the Albert Einstein College of Medicine Medical Scientist Training Program with both a PhD in Cell Biology/Immunology and an MD. She completed her Internal Medicine Residency at Columbia University, New York Presbyterian Hospital in New York City, she did her Fellowship in Allergy and Immunology at the National Institute of Allergy and Infectious Disease (NIAID) in Bethesda, Maryland. She 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.