Nehgar Goudat is a mother of a young child with food allergies. Her son, Nile, is allergic to coconut, wheat, dairy, soy, tree nuts, peas, and eggs. “It is a lot because I cannot give him normal food. It is so hard.”
On September 9th, 2021, Nehgar and 3 other FEI representatives attended the Food and Drug Administration’s (FDA) Externally-Led Patient Drug Development Meeting (EL-PFDD) for Food Allergies in Washington, DC. The purpose of EL-PFDD meetings is to “more systematically obtain the patient perspective on specific diseases and their treatments.” And for food allergies, that means hearing the experiences of individuals with or caregivers of individuals with food allergies.
Young children and allergies.
At the store, the foods Nehgar finds that she can give her son are all very expensive. “Yesterday I was just trying to find him a snack. Every box I picked out either had nuts, or milk, or eggs. All of the processed foods had these ingredients in them.” Nehgar is still learning how to find foods that are safe and healthy for him.
“Tonight, we are having pizza. He is not old enough for us to tell him, ‘You have allergies, you cannot have that.’ What can I do? The only thing I can give him is chicken breast with some rice. I can see it on his face, it is stressful.” After her son’s first trip to the emergency room after an allergic reaction, she was told to take her son to see a food allergy specialist. Her family is still paying off the bills from that visit.
So, when Erin Martinez, Director of Operations at Food Equality Initiative, asked her if she wanted to go to the EL-PFDD meeting to speak on behalf of caregivers of children with food allergies, Nehgar could not say yes fast enough. “I told her I would love to do anything to help families across the nation, because it is really necessary. People are struggling.”
Advocating as a caregiver.
Nehgar is advocating as a Food Equality Initiative representative, hoping to help the FDA and the healthcare industry recognize how expensive it is to treat a child with food allergies, a condition that more and more children are being diagnosed with every year. The emergency room visits, the allergen tests, the free-from food, the epinephrine auto-injectors… all these costs add up and have put Nehgar’s family in debt.
In order to add more food to Nehgar’s son’s diet, the specialists recommend testing in a controlled healthcare setting to avoid trips to the emergency room. However, the costs of these tests are high, and her family could not spare the expense. She had to choose to feed her son only the foods they knew were safe, and not introduce new foods, to spare a severe allergic reaction. No parent wants to limit their child, no parent wants to refuse their child medical care. This is why Nehgar volunteered to go to the Externally-Led Patient Focused Drug Development Meeting in Washington, DC.
“This is so needed. I only have one child going through this, but others have 4 or 5. The government and other people need to know what they are going through. They don’t know the everyday struggle.” Food allergies are a life-threatening disease. Knowing this takes a huge mental toll on parents, who are responsible for the livelihood of their children.
Language barriers in medicine.
At the EL-PFDD meeting, Nehgar discussed the challenges she has experienced in her multilingual background. “Where we live in the 50 states, there’s Spanish spoken, Arabic spoken, and so many other minority languages where the people don’t speak English at all. How are they able to know what exactly is in a product?”
She suggested expanding upon the “Scan Me” function on some food labels that you might have seen around the grocery store. “It would be helpful if there was an app or QR code with ingredient lists in other languages to help all people, not just people who speak English.” The same can be said with instructions on epinephrine auto-injectors and other medications.
Nehgar found herself taking a lot of notes from the testimonies she was hearing. “There was a gentleman who was talking about how there were kids bullying him at school. He was telling them not to throw his allergens at him because that really is risky. I was just thinking, ‘how do you go about a challenging situation like that? How do you explain to another child or individual that this is serious?’ My son eventually will be on the playground in middle school and then high school. There will be people challenging him, asking him questions like, ‘Why can’t you have this food,’ ‘why can’t you have school food,’ ‘what’s going on with you?’ I was just getting as much information as I can so that way I can learn and teach my child for the future.”
Nehgar found the EL-PFDD meeting to be an extremely educational and validating experience. She enjoyed hearing everyone’s individual experience and was surprised to hear how similar some stories were to her own. Food allergies are often an incredibly isolating disease, but this meeting helped to show that in coming together to talk about experiences, you can feel less alone. There is significant power in that realization that other people are going through this, it gives you more agency to advocate and stand up for yourself or people you love with food allergies.