Recently, the US Food and Drug Administration (FDA) approved a label expansion for the monoclonal antibody dupilumab (marketed as Dupixent) in the treatment of a rare disease called eosinophilic esophagitis (EoE). The therapy was first approved for EoE in May 2022 for patients aged 12 or older, weighing at least 40 kg. The latest approval expands to cover patients aged 1-11, weighing at least 15 kg. Patient Worthy recently sat down with Joe Zimmerman, who is both a patient himself and also has two children living with the disease, to discuss how this approval might impact them. Patient Worthy also spoke with the family’s pediatric gastroenterologist, Dr. Sabina Mir.

Joe’s Story

Joe struggled with symptoms for much of his life, but only recognized that he was living with eosinophilic esophagitis when two of his children began to struggle with symptoms:

“I grew up at a time when EoE wasn’t really a thing just yet. They were still looking into it. I just thought it was something different, like indigestion or some sort of reaction.”

As time has progressed, Joe’s symptoms have worsened, so he has to be cautious about what he eats. Certain foods can be major triggers for him and his children, such as dairy or chocolate, resulting in severe vomiting:

“Not the sort of vomiting response that you would expect in a young toddler.” – Joe

The diagnosis naturally had a pretty major impact on how Joe takes care of his children. Talking about the condition is critical in social settings or at restaurants, where exposure to triggers is a possible risk. Many common childhood treats, such as cheesy pizza, chocolate bars, or ice cream are off the menu at the Zimmerman household, so Joe has learned to come up with different ways to reward his kids.

“You get around the complications of other people bringing group foods without always needing to explain.”

Dr. Mir made a point of distinguishing EoE from a typical allergy:

“It is described as an allergy but in its true definition, EoE is a chronic, progressive disease mediated by type 2 inflammation leading to the esophagus not working. It’s not an anaphylactic reaction.” – Dr. Sabrina Mir

Hazel participated in the clinical study which ultimately led to the expanded label for Dupixent in children this young. It was a double-blind study at first, so it wasn’t clear if Hazel was getting treatment, but the endoscopy results indicated that her esophagus was healthy.

Since receiving the treatment, Hazel’s condition has improved. She’s even been able to try some new snacks. Joe shared that Hazel was able to eat goldfish for the first time recently.

About Eosinophilic Esophagitis

Eosinophilic esophagitis (EoE), is a chronic condition in which the esophagus becomes inflamed due to an allergic reaction that involves the activity of eosinophils, a form of white blood cell. Generally, the allergic reaction is triggered by some type of food that the patient has eaten, but it is often difficult to determine which specific food item is the cause. Symptoms of eosinophilic esophagitis include difficulty swallowing, nausea, painful swallowing, heartburn, rings in the esophagus, narrowing of the esophagus, blockage of the esophagus, and vomiting. Current treatments involve medication to suppress the immune response, eliminating known food allergens, and expanding the esophagus. Many people with the condition may have other allergic conditions such as food allergies, asthma, eczema, and seasonal allergies. To learn more about eosinophilic esophagitis, click here.