“We all take swallowing for granted, until we can’t anymore”—powerful words from respected gastroenterologist Dr. Gary Falk, Professor of Medicine at the University of Pennsylvania School of Medicine.
Dr. Falk made an early career decision to work in a specialty where he could make a real difference in the quality of life of his patients. These early decisions led to a career in gastroenterology that has spanned the last 35 years.
With clinical practice and research interests in esophageal diseases, particularly eosinophilic esophagitis (EoE) and Barrett’s esophagus, Dr. Falk understands the challenges these patient communities face. He shares his insights, experience, and hopes for improved outcomes for all.
What are the clinical challenges of treating people with EoE?
“For esophageal diseases, the fundamental challenges are achieving an accurate and timely diagnosis and accessing simple effective therapies. Almost 50% of patients with swallowing problems have not sought care for difficulty swallowing.
EoE is considered a relatively new disease (it was first described as recently as the early 1990s), but our understanding has only really advanced over the last 10 years due to increased awareness and research. Patient and physician awareness still have some ways to go to be on par with more established diseases.
Individuals with EoE who have trouble swallowing often rationalize the symptom as a normal behavior. Rather than pursuing it as a serious health issue—and perhaps unconsciously—they instead start adapting. They begin to chew food more carefully and avoid certain food types and consistencies. They assume that is 'how they're built' and they don't question it. That is, until a complication occurs, like a food impaction (when food becomes stuck in your esophagus).
It is important that we raise awareness to get the clear message out there: if you can't swallow or have impaired swallowing, it needs to be explored further!
The good news is that EoE is very treatable, and effective treatment can eliminate symptoms. However, it is important to understand that this is a chronic condition so long-term remission cannot occur without sustained and managed treatment. Without adequate management, around 85% of individuals will relapse within six to eight months.”
What do you consider to be major unmet needs for people with EoE?
“First and foremost is understanding of the disease itself. There needs to be increased awareness regarding swallowing abnormalities and this needs to be followed up clinically.
Another is the need to address the extensive misinformation out there. For example: the patient population is flooded with the fact that the proton pump inhibitors are dangerous drugs—courtesy of 'Dr Google'—which has led to this mistrust and unfounded worries about proton pump inhibitors. We need more reliable sources of patient information available online for EoE. There is a big drive from patient advocacy groups in this regard, which is great to see.
Patient experience around diagnostics remains a major unmet need for EoE. Currently the only way you can diagnose EoE and assess response to therapy is with an endoscopy. We could certainly use alternatives which includes blood based, less invasive tissue sampling, or radiologic methods, especially in the assessment of response to therapy. All these alternatives would help improve the diagnostic experience. Increased awareness in the general population and improved awareness among healthcare professionals will also help to reduce the patient burden and expedite the diagnostic pathway.
Access to treatments is another issue for EoE. Currently within the European Union, there is one approved drug but there are no approved drugs in North America. Ultimately, we need to have access to proven effective therapies for our patients.
The good news is that this is a golden age for drug development in EoE with many different compounds under investigation, so there is reason to be optimistic. Over the next five to ten years there is going to be an explosion of available drugs which may open treatment access and options for patients.
It is also important to mention that this is a food allergy driven disease. Standard allergy tests are of limited value in guiding treatment of EoE. That being said, many EoE patients have other allergies that would benefit from co-management with an allergist.
There is currently considerable research underway around the world and I am fortunate to be part of a research consortium known as CEGIR [consortium for eosinophilic diseases researchers].There is a robust and highly motivated EoE research, clinical care, and translational research community which is driving this forward. It is going to require time, resources, and results but we have much to feel positive about.”
Are there comorbidities and patterns associated with EoE?
“It is quite common for people with EoE to have atopic diseases, including eczema, allergic rhinitis, seasonal allergies, and asthma. It is important that these comorbidities are effectively managed to achieve holistic quality of life for individuals. In my view EoE needs multidisciplinary care. A mixture of multidisciplinary, collaborative, collegial care involving gastroenterologists, allergists, and dietitians will achieve optimum results for patients.”
Atopy is the genetic tendency to develop allergic diseases.
Is the approach to allergens primarily diet based or are environmental factors a consideration too?
“EoE is an allergic disease and involves exposure to dietary and environmental allergens. Access to dietitians and allergists is essential to support the patient collaboratively. Sometimes in the US, there is a suboptimal working relationship between the allergy and GI communities which does not serve the patient well.
I believe that a multi-disciplinary approach with allergists, dietitians, nutritionists, and gastroenterologists as key stakeholders in the patient’s care is essential.”
Are mental health concerns recognized and a part of the care plan?
“We know EoE affects the quality of a person’s life. We see people who have had complications like food impactions and on rare occasions esophageal perforations. These events can result in considerable anxiety. Understanding the full mental health impact of EoE is an understudied area and an area which would benefit from more resources.”
An esophageal perforation is a rare and possibly life-threatening condition. It is a hole in the esophagus that causes liquids and foods to spill into the abdomen.
What advice would you give to someone who has recently been diagnosed with EoE?
“The first thing to do is to make sure they are seeing someone with expertise in the disease. Patients need to be proactive to find the experts but there is support out there to guide them through this. In the US, advocacy groups are fantastic for steering patients in the right direction so I would encourage patients to engage with them early on.
When I consult with patients, I ensure they fully understand the disease at the outset. I go over the natural history, the implications of the disease, and the treatment options. Then, we decide on a treatment plan together. My advice is to build a strong partnership with your clinical team and engage fully in the process, which will lead to best possible outcomes for long-term, sustained health.”