Access to Specialty Care for Eosinophilic Esophagitis (EoE)
Real Talk: Eosinophilic Diseases
Release Date: 10/26/2022
The Spoon Theory and Eosinophilic Disorders
Real Talk: Eosinophilic Diseases
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about the Spoon Theory. In this episode, Ryan and Holly discuss the origin of the Spoon Theory, their experiences, and what the Spoon Theory means in their lives. Listen to this episode to learn how the Spoon Theory could work for you. Disclaimer: The information provided in this podcast is designed to...
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Gastro Girl and GI Diseases: Conversation With Jacqueline Gaulin
Real Talk: Eosinophilic Diseases
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Jacqueline Gaulin, the Founder of Gastro Girl, a source of information for people living with various gastrointestinal disorders. In this episode, Ryan and Holly interview Jacqueline Gaulin about her career, how she started Gastro Girl, its podcast, and the partnership between Gastro Girl, the American College...
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The Family Risk of Eosinophilic Gastrointestinal Diseases
Real Talk: Eosinophilic Diseases
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Mary Jo Strobel, APFED’s Executive Director, speak with Dr. Kathryn Peterson, MD, MSCI, a Professor of Gastroenterology at the University of Utah Health. In this episode, Ryan and Mary Jo interview Dr. Peterson about the family risk of eosinophilic gastrointestinal diseases, discussing the studies she has done, future work she is planning, and other studies of related topics. She shares that she is a parent to a patient living with an...
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Remodeling and Eosinophilic Esophagitis (EoE)
Real Talk: Eosinophilic Diseases
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Dr. Amanda Muir, an Assistant Professor of Pediatrics at the Children’s Hospital of Philadelphia. In this episode, Ryan and Holly interview Dr. Muir about tissue remodeling and eosinophilic esophagitis (EoE). Dr. Muir describes remodeling and stiffening, its effects, and how it relates to treatment and...
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Journey to an Eosinophilic Esophagitis (EoE) Diagnosis
Real Talk: Eosinophilic Diseases
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Moises Velasquez-Manoff, a health and science writer living with EoE. He is a contributing writer for the New York Times Magazine. He writes about the human microbiome and its impact on health, as well as climate, COVID-19, and other health and science topics. In this episode, Ryan and Hollyinterview Moises...
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Community Perspective: Eosinophilic Gastritis (EoG)
Real Talk: Eosinophilic Diseases
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Mary Jo Strobel, APFED’s Executive Director, speak with Dr. Jenny Huang, an allergy and immunology fellow at Scripps Clinic, who has a unique perspective of also living with eosinophilic gastritis (EoG). In this episode, Ryan and Mary Jo interview Dr. Jenny Huang about various EGIDs, her allergy and immunology fellowship, her EoG diagnosis, and the elimination diet she follows to treat her EoG. Dr. Huang speaks about patients she sees,...
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Community Perspective: Eosinophilic Esophagitis
Real Talk: Eosinophilic Diseases
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE, who serves on APFED’s Health Sciences Advisory Council, talk with Declan, a teenager living with eosinophilic esophagitis. In this episode, Ryan and Holly interview Declan about his EoE diagnosis, his dietary restrictions, how he receives support from his parents and friends, and upcoming milestones such as transitioning clinical care to an adult provider and...
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Esophageal String Test: Monitoring Tool Use and Development
Real Talk: Eosinophilic Diseases
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council, talk with Drs. Robin Shandas and Steven Ackerman, are scientists who work together at EnteroTrack. In this episode, Ryan and Holly interview Drs. Shandas and Ackerman about the development of the esophageal string test (EST), or simply the string test. They discuss the initial concept and the work that led...
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Live from APFED’s EOS Connection 2023
Real Talk: Eosinophilic Diseases
Description: Ryan Piansky, a college student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech pathologist living with EoE who specializes in feeding therapy and serves on APFED’s Health Sciences Advisory Council recorded this episode live at APFED’s annual patient education conference in Denver, CO. They shared their experiences with this year’s conference, discussed takeaways from the conference presentations, and offered ways to continue the conversation. Recordings of the conference presentations are available to...
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Proton Pump Inhibitors and EoE
Real Talk: Eosinophilic Diseases
Description: Co-host Mary Jo Strobel, APFED’s Executive Director, is joined by co-host Holly Knotowicz, a speech-language pathologist and feeding specialist living with eosinophilic esophagitis (EoE) who serves on APFED’s Health Sciences Advisory Council. They talk with guest Dr. James Franciosi, Chief of the Division of Gastroenterology, Hepatology, and Nutrition at Nemours Children’s Health in Orlando, Florida. In this episode, Mary Jo Strobel and Holly Knotowicz interview Dr. James Franciosi about his research with proton pump inhibitors, personalized medicine, the different factors...
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Co-hosts Ryan Piansky and Mary Jo Strobel, APFED’s Executive Director, talk with guest Emily McGowan, MD, PhD, about access to specialty care for eosinophilic esophagitis (EoE).
Emily McGowan MD, PhD, is an Associate Professor in the Division of Allergy & Clinical Immunology at the University of Virginia School of Medicine. Her primary research and clinical interest is food allergy, and her previous research focused on understanding the underlying causes of the increased prevalence of food allergy in the United States. When Dr. McGowan moved to the University of Virginia School of Medicine in 2016, her clinical and research interests shifted toward understanding the epidemiology and treatment options for eosinophilic gastrointestinal diseases (EGIDs). Dr. McGowan is certified by the American Board of Internal Medicine and the American Board of Allergy and Immunology and is an active member of the American Academy of Allergy, Asthma, and Immunology.
In this episode, Ryan and Mary Jo discuss with Dr. McGowan her research and what brought her to study EoE. They discuss papers she wrote on the prevalence of diagnosis in urban and rural areas. They also explore how the question came up of whether EoE is less prevalent in rural and impoverished areas. A comparison of data on the location of gastroenterologists across the United States showed that rural and impoverished areas have the same prevalence of diagnosis among patients who see a gastroenterologist as patients from more urban areas.
Listen in for information about Dr. McGowan’s research on access to care.
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 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:
[1:15] Mary Jo introduces today’s topic, Access to Care, and today’s guest, Dr. Emily McGowan, and shares Dr. McGowan’s research interests in food allergies and eosinophilic gastrointestinal diseases.
[2:01] Dr. McGowan came to the field of EoE from the world of food allergies. Having a peanut allergy herself, Dr. McGowan has always wanted to improve the lives of patients with food allergies.
[2:37] Dr. McGowan did her fellowship at Johns Hopkins researching pediatric food allergy and racial and ethnic disparities for food allergy. When Dr. McGowan joined the Johns Hopkins faculty in 2014, she began treating EoE patients.
[3:12] Dr. McGowan’s found that the questions she asked about pediatric food allergy also applied to EoE; why are many more being diagnosed and why is there racial and ethnic disparity?
[3:36] Dr. McGowan’s shift of focus was completed when she moved to the University of Virginia. She took over as the attending allergist in the pediatric EGID clinic. At the same time, they started an adult clinic. That allowed her to see EoE and EGID patients from early childhood through adulthood.
[4:17] Dr. McGowan and co-authors from different institutions and specialties recently published a paper on diagnostic disparities in pediatric EoE in rural communities where there is a substantial distance to pediatric gastroenterology providers. It started with looking at over 18 million children enrolled in Medicaid in 2012.
[4:56] The doctors were looking to estimate the prevalence of EoE and they were interested in how poverty and urban status affected the prevalence. The first thing they found was a striking inverse relationship with poverty. The more impoverished the neighborhood, the less likely the child was to be diagnosed with EoE.
[5:20] The second thing they found was that EoE was less prevalent in rural areas in the United States. This finding caught the attention of two collaborators, Dr. Elizabeth Jensen and Dr. Amanda Muir, who reached out and asked if the decreased prevalence in rural areas was due to decreased access to pediatric gastroenterologists.
The researchers combined data and collaborated on the newly published manuscript.
[6:10] The doctors looked at different models and spliced the data in different ways and found an association between lower prevalence in rural areas and how far away the child lived from a physician who could diagnose the disease.
[6:45] Dr. McGowan was interested that the children who lived in more impoverished areas were less likely to be diagnosed with EoE. For every 5% increase in income in that area, there was an increase in the prevalence of EoE. This brought up the question “are there other barriers to care that aren’t related to distance to provider, like co-pay?”
[8:45] For research to advance, trust must be built within communities and researchers should meet patients where they are, which takes time and effort. Dr. McGowan notes that the NIH and other health institutions are making health disparities a research priority because everyone deserves good health and there’s a lot more work that needs to be done in this area.
[9:33] Dr. McGowan has patients that travel a distance from all over Virginia and sometimes other states to see her for EGID care. Dr. McGowan tries to work with their local allergist or gastroenterologist to help ease the burden of their traveling for care.
[10:51] Dr. McGowan empowers patients to advocate for themselves and their families. They should feel they can research the condition, the treatment options, and the providers. If you’re living in a community where the provider isn’t familiar with your condition, education is essential to ensure that you get adequate care.
[11:43] Besides distance to the provider, the financial aspect often gets overlooked. In the Medicaid dataset, patients who lived with a higher level of poverty were less likely to be diagnosed with EoE.
[12:18] There is an assumption that EoE primarily affects white males. But it may be that previous studies that have been used to define the risk factors for EoE have been biased by the people who were coming in for specialty care. It is important to hone in on that to see if this is truly a disease in which white males are more affected.
[13:01] A lot of Dr. McGowan’s patients don’t have a local gastroenterology provider. Those patients often present later in the course of the disease. They tend to have fibrotic findings that may not be found in patients who are diagnosed early. The risk of not catching the disease early is that the inflammation progresses to fibrosis.
[13:50] The first step to reducing disparities is to get a better sense of where they exist and why. This study shows that disparities may exist. Now we need to prove that by identifying factors we can change. When we move forward we can adjust specific things that have an impact. There are new tests that screen for EoE without an endoscopy.
[14:37] We can increase awareness of EoE among providers and patients in rural areas so that when patients come in with compelling symptoms the provider thinks of EoE as one of the diagnostics. We can increase access to specialists in rural areas by having specialists commute or by using telemedicine.
[15:52] There have been a lot of benefits resulting from the expansion of telemedicine during the pandemic. Some of Dr. McGowan’s patients who live far away use it instead of taking a day off to see her. It opens up opportunities to partner with rural areas to deliver specialty care at far distances.
[16:23] There are some barriers to telemedicine. A lot of areas don’t have high-speed internet or smartphones. A physician needs to be licensed in the state where the care is being received. For EoE there is the issue that it is a tissue diagnosis so the patient will still need to be seen to get the biopsy or the noninvasive tests.
[17:07] Dr. McGowan is currently involved in a few exciting projects, one of which is directly related to this topic. Based on this work and her clinical experience, she hypothesizes that EoE is probably underdiagnosed, even among patients who are seeing an allergist and have access to specialty care.
[17:28] Dr. McGowan and her team did a pilot study of 100 patients of the allergy clinic at UVA, asking them if they had any symptoms of EoE. They found that 44% of those patients had difficulty swallowing, and 10% had intermittent food impaction over the past year for more than 30 minutes. Testing found more undiagnosed EoE than expected.
[18:11] Dr. McGowan is working on getting more funding to extend the project for a larger screening study of EoE. She says people minimize their symptoms by eating slower and drinking more water when they eat without knowing that’s atypical. We don’t talk about what normal feeding behaviors are. The pilot study will be in print soon.
[22:40] Ryan thanks Dr. McGowan for taking the time to be on the podcast. Dr. McGowan thanks Ryan and Mary Jo for having her talk about this important topic. Ryan shares resource links for listeners to learn more and connect.
Mentioned in This Episode:
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Division of Allergy & Clinical Immunology at the University of Virginia School of Medicine
APFED EOS Connections Online Community
Real Talk: Eosinophilic Diseases Podcast
This episode is brought to you thanks to the support of our Education Partners Abbott, Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.
Tweetables:
“For every 5% increase there was in income in that [impoverished] area, there was an increase in the prevalence of EoE.” — Dr. Emily McGowan
“This study was a good first step to show that these disparities may exist. Now we need to prove that and I think we need to dig deeper to identify the factors we can change.” — Dr. Emily McGowan
“[Telemedicine] is a great first step and I’m really excited to see how it evolves within our specialty.” — Dr. Emily McGowan
“Because this is such a slowly progressing disease, people eat slower or drink more water when they're eating and they don’t even realize that what they’re doing is necessarily atypical.” — Dr. Emily McGowan