The Evolution of Eosinophilic Gastrointestinal Disorders, with Dr. Dan Atkins

Real 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. Dan Atkins about Children’s Hospital Colorado’s multidisciplinary treatment program for eosinophilic gastrointestinal disorders (EGIDs).

In this episode, Ryan and Holly interview their friend, Dr. Dan Atkins. Ryan was a long-time patient of Dr. Atkins and Holly worked as a feeding specialist with Dr. Atkins at Children’s Hospital Colorado. Together, Dr. Atkins and Dr. Glen Furuta developed the Gastrointestinal Eosinophilic Disease Program at Children’s Hospital Colorado as a multidisciplinary treatment center for pediatric patients impacted by eosinophilic gastrointestinal diseases. They discuss how treatments and medicines have developed over the years. The clinic started with local patients but now also receives referrals from around the United States. Listen in for tips on identifying EGIDs and using multidisciplinary treatment.

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:

[:50] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz.

[1:19] Holly introduces today’s topic, the evolution of eosinophilic gastrointestinal disorders, and the guest, Dr. Dan Atkins, a pediatric allergist at Children’s

Hospital Colorado.

[1:32] With more than 40 years of experience as an allergist, Dr. Atkins has seen the evolution of eosinophilic disease patient care first-hand and helped establish the Gastrointestinal Eosinophilic Disease Program at Children’s Hospital Colorado.

[1:46] The Gastrointestinal Eosinophilic Disease Program is a multi-disciplinary program designed for the optimal evaluation and treatment of children with eosinophilic gastrointestinal disorders.

[2:10] Dr. Atkins thanks Holly, Ryan, and APFED for programs like this podcast to help educate the population of patients with eosinophilic gastrointestinal diseases.

[2:39] Dr. Atkins chose a pediatric residency. The last rotation was with an incredible allergist, Dr. Lenny Hoffman, in Houston. Dr. Atkins loved seeing patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis.

[2:59] The thing Dr. Atkins liked about it was he could take kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well. He could see a change in their quality of life. That got him started.

[3:22] Dr. Atkins did an allergy and immunology fellowship in Buffalo, New York with Dr. Elliott Ellis and Dr. Elliott Middleton who had just written the Allergy: Principles and Practice text. They were incredible, brilliant mentors and wonderful people.

[3:55] Dr. Atkins went to the National Institutes of Health to do basic science research after learning of a double-blind, placebo-controlled food challenge by Dr. Allan Bock and Dr. May in Denver.

[4:27] Dr. Atkins did a clinical project on food allergy with Dr. Dean Metcalf, which was one of the first double-blind, placebo-controlled food challenges in adults. They published two papers on it.

[4:47] Then Dr. Atkins went to work on the faculty of National Jewish Health. He was there for 25 years.

[5:04] Dr. Atkins was invited to join the Children’s Hospital of Colorado because they wanted to start an allergy program there.

[5:21] Dr. Atkins got interested in eosinophilic gastrointestinal diseases in 2006 after he saw a patient who had had difficulty eating, eosinophils in his esophagus, and food allergies. In another state, a doctor had put him on an elimination diet and he got better.

[5:42] The patient moved to Denver. Dr. Atkins saw him and found the case to be interesting. He looked in the literature and found an article on eosinophilic esophagitis by Dr. Alex Straumann.

[5:53] A gastroenterologist, Dr. Glen Furuta, came to Children’s Hospital, looking to work with an allergist. Dr. Atkins met with him and they hit it off. They saw the need for a multidisciplinary program to take care of these patients.

[6:31] Dr. Atkins has always been interested in diseases that led to eosinophilia. Most of them were allergic diseases. Eosinophilic esophagitis and other eosinophilic gastrointestinal diseases came along with much more of a focus on eosinophils in the gut.

[6:45] The first case of eosinophilic esophagitis that Dr. Atkins treated was a patient in 2006. He believes he probably missed earlier cases just by not asking the right question, which is, “Does your child eat slower than everybody else?”

[7:18] Once Dr. Atkins started asking patients that question, it stunned him to find out how many patients said that was part of the issue. He followed up with testing and, sure enough, they had eosinophilic esophagitis.

[7:45] Dr. Atkins says that, in general, eosinophils are present in allergic conditions. If you look at “allergic snot,” and stain it up, it’s full of eosinophils. If you have eosinophilic esophagitis and allergic rhinitis, if you swallow snot, it will impact your EoE.

[8:40] Dr. Atkins tends to be more aggressive with using a topical nasal steroid spray with patients who have allergic rhinitis because that decreases the eosinophils in the nose.

[8:50] Dr. Atkins says since eosinophils are on their way to areas that are involved in allergic inflammation, that’s how Dr. Atkins got interested in eosinophils. It played out with the multidisciplinary group and eosinophilic esophagitis.

[9:07] Ryan went to see Drs. Atkins and Furuta when he was eight. Ryan is so thankful he was able to go to their clinic and is grateful that the doctors helped to create one of the first programs dedicated to treating EGIDs in the U.S.

[9:40] Dr. Atkins credits Dr. Furuta with the multidisciplinary program. They discussed who needed to be part of it. A gastroenterologist first but Dr. Atkins thought an allergist was also necessary. Treating other allergies helps the patient’s eosinophilic condition.

[10:51] They decided they needed excellent nurses who loved working with kids. A lot of the kids had trouble eating, so the group needed feeding therapists and dieticians because these kids have a limited diet. They also needed a pathologist to read the slides.

[12:59] Because this is a burdensome disease, they needed psychologists for the child and the family. Learning coping mechanisms is a big part of the experience.

[14:20] As the program progressed, they saw they needed an endocrinologist to look at the children who weren’t growing as expected. In clinic, they needed a child health person who could play games with the kids and keep them engaged during the long visits.

[14:44] That was how the program evolved. They had an idea but they had to show people it would be an active clinic that would grow and they had enough patients to warrant the program. It happened quickly.

[14:54] The program is fortunate to have a wonderful group of people who get along well and check their egos at the door. There are lots of conversations. Everybody’s willing to listen and put their heads together. They compare notes and histories.

[15:46] Holly had been working as a feeding specialist at the hospital. Someone was on leave so Holly was put into the clinic. She had never heard of EoE; she didn’t know she had it! Her first meeting was a roomful of professionals comparing notes on patients.

[16:31] Holly was in disbelief that these medical professionals met together for an hour weekly to discuss their patients with each other. Later, Holly followed a patient with Dr. Atkins, then Dr. Furuta, then a dietician, and then a nurse.

[17:01] As she followed the patient, Holly listened and recognized the symptoms. She thought that she might have EoE! She introduced herself to Dr. Atkins and asked for a referral for a diagnosis. She was diagnosed that year with EoE.

[17:25] Holly sees many unique things about the program. She was impressed that they had the foresight to include a feeding specialist, not a common specialty at the time. Holly also thinks it’s neat that the clinic sees patients from all over the country.

[18:01] Dr. Atkins says the availability of care is improving across the country. When the program began, people had not heard of eosinophilic esophagitis, not even the local pediatricians. Allergists were just becoming aware of it. They had to be educated.

[18:29] There were people in other communities who didn’t have access to multidisciplinary care. Over time the word has spread. Pediatricians are referring patients to the clinic for diagnosis. Care availability has improved.

[18:55] Not every patient needs a multidisciplinary program. If you have mild to moderate eosinophilic esophagitis and you’re responding to a current therapy, are doing well, and are communicating well with your provider, that’s great!

[19:10] If you need a second opinion or if you have a complicated case, there are some benefits to multidisciplinary care.

[19:33] The providers at the clinic listen to the children as well as to the parents. When a food is removed, a dietician can suggest an alternative the child might like.

[20:07] The clinic wanted to treat local patients but go beyond that, as well. They learn a lot from seeing patients from all over the country with different exposures and being treated by different doctors.

[20:17] When Ryan was young, he would go from his home in Georgia to Denver, yearly. He reflected it felt like summer camp. He got a scope one day and saw the full team of specialists the next few days. It was different from how he was treated before.

[21:06] Ryan says he was listened to and heard, and it was such a great experience for him as a patient to be seen in Dr. Atkins’s clinic.

[21:46] Dr. Atkins says they are trying to teach children to be their own advocates. If the doctor does not listen to what the patients have to say, why should they be involved?

[22:50] A patient experience at the clinic starts with somebody deciding they need to go there and get a second opinion or a diagnosis. They get a referral to the clinic. Dr. Atkins mentions the need for administrative staff as part of the clinic team.

[23:40] The patient fills out forms and gives their records to be reviewed by a physician before being seen to see if the clinic is a good fit for them. If it is, the patient is scheduled with an appointment for each doctor and professional in the clinic.

[24:02] The patient records are seen by each professional on the team for how they relate to the professional’s specialty. They decide what tests need to be done and if they are covered by insurance.

[24:27] The care team meets before clinic to talk about all new and follow-up patients. Then the patient comes in to see the providers, one after another. Patients don’t see all the providers in the same order. The endocrinologist and psychologist are not in the clinic.

[25:39] The clinic visit takes three to four hours. It may involve skin testing for allergies or spirometry for lung function. The patient is scheduled for an endoscopy. When appropriate, they offer transnasal endoscopy, which takes only eight minutes and does not require anesthesia.

[27:11] If the patient has a stricture and the esophagus needs to be dilated, the patient is asleep for that. There is also the esophageal string test, developed by Dr. Furuta. It takes a little over an hour and tells whether there is active disease or not.

[28:02] Care has been made easier. Patients have different options for testing. Holly points out that the family is a part of the team and they are involved in every process and decision. Dr. Atkins says that shared decision-making is a cornerstone of care.

[29:31] Dr. Atkins says what happens in the room is the care provider and patient connect and the patient talks about their problems with somebody they trust. To get the patient to do what they need to do, they have to understand and feel understood.

[31:03] When Dr. Atkins started treating patients with asthma at National Jewish, patients came for a long evaluation, sometimes months. The only treatments were theophylline and steroids. There were side effects to those medications.

[31:39] Dr. Atkins says it has been wonderful to be involved while new treatments have evolved. For eosinophilic esophagitis, when diet works for people, it works. He shares the experience of a teen who is doing great on a diet eliminating milk and eggs.

[32:56] Don’t discount diet. It’s still up front. On the other hand, that doesn’t work for some people. A metered dose inhaler with the puff swallowed may work for some. That’s ideal for teenagers. There are other treatment choices like budesonide.

[34:14] Swallowed steroids go to the liver, where they are metabolized. Now biologics are revolutionizing treatment. Not everyone needs biologics but they’re a great choice for some.

[35:30] A patient starting out doesn’t need biologics as a first treatment. Other therapies may be effective and cheaper. If a patient doesn’t respond, they can go to a biologic. More treatments are being developed.

[36:42] Dr. Atkins wishes for a way to determine the food trigger with a simple test.

[38:00] Dr. Altkins remembers Ryan as a little kid who should have gotten off of milk but he just wouldn’t do it. He also recalls a patient who thrived when he was put on the right elimination diet, giving up only a couple of foods.

[38:33] Dr. Atkins doesn’t want to diminish any of his patients. Every patient is an individual. It’s so much fun working through the problems, the goal, and the adjustments to get there and how the patient is dealing with it, and then watching them do better!

[40:35] The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be lifelong. But in the lifetime of patients he is seeing now, Dr. Atkins thinks we will see a cure, or at least, much easier, better treatments.

[40:56] In the population Dr. Atkins treats, they start treatment and all of a sudden, they’re not having trouble swallowing. Everyone who had a dilation said they would do it again when needed. They can swallow better.

[41:44] But then, they have to maintain control of the inflammation. When people feel better, their impetus to take the medication drops off. If they stop taking their medications, a month later, they can’t swallow their bagels.

[42:18] There are holidays, such as Halloween, that are challenging for kids who are on elimination diets. If they collect candy but can’t eat any of it, that may be a problem.

[42:48] People who don’t have EoE don’t understand not being able to swallow. Dr. Atkins sees dads who have this but don’t want to go get checked out. He tells them they need to be examples for their children and go get endoscopies to know if the condition is familial.

[43:53] Dr. Atkins says there are a number of other excellent programs in the country.

[44:24] Holly thanks Dr. Dan Atkins for sharing his expertise to help others and continually teaching the medical community how to recognize eosinophilic diseases and optimize care for all patients.

[44:40] Eosinophilic diseases are not going away. Allergists need to learn the ins and outs of all different eosinophilic disorders. The medications available to treat those disorders are increasing.

[45:02] Early in your career as an allergist, learn as much immunology as you can and how the biologics work and the newer medications coming out. Follow side effects so you know what to say to your patients and what to look for.

[45:20] A lot of EoE patients get picked up in the allergist’s office because they have other allergic diseases. As an allergist, ask if the child or parent eats slower than everybody else.

[45:57] Ryan thanks Dr. Dan Atkins for joining today and personally, for all he has done to treat Ryan over the years. He thanks Dr. Atkins on behalf of APFED and for being instrumental in many APFED conferences and educational materials.

[46:30] Dr. Atkins’s biggest hope is that people sort out the pathways that lead to eosinophilic esophagitis and that we will have an array of targeted treatments for individual patients to cure that disorder for that patient without side effects.

[47:50] Dr. Atkins thanks Ryan and Holly again for the opportunity to join them. It’s been such a pleasure. He thanks APFED again. He has been a big fan for years. Giving patients a voice to share their stories is incredibly important.

[47:34] For our listeners who would like to learn more about eosinophilic disorders, please visit APFED.org and check out the links below.

[47:41] If you’re looking to find a specialist who treats eosinophilic disorders, you can use APFED’s Specialist Finder at APFED.org/specialist.

[47:51] 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/.

[48:07] Holly thanks Dan and also thanks APFED’s Education Partner Bristol Myers Squibb, GSK, Sanofi, and Regeneron, who supported this episode.

Mentioned in This Episode:

Dr. Dan Atkins, pediatric allergist

Children’s Hospital Colorado

National Institutes of Health

National Jewish Health

Allergy: Principles and Practice, by Elliott Middleton Jr., Charles E. Reed, Elliot F. Ellis, N. Franklin Adkinson Jr., John W. Yunginger, and William W. Busse

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.

Tweetables:

“I loved helping patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis. You could take these kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well.” — Dr. Dan Atkins

“With patients who have allergic rhinitis, we tend to be more aggressive with using a topical nasal steroid spray because that decreases the eosinophils in the nose.” — Dr. Dan Atkins

“We are trying to teach children to be their own advocates. … If you don’t listen to what the patients have to say, why should [the patients] be involved?” — Dr. Dan Atkins

“The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be a lifelong phenomenon.” — Dr. Dan Atkins