Food Allergies: anxiety and isolation
State: South Carolina
Congressional District: SC02
Issues and Challenges
Eron has encountered: Access to Medicine, Rare / Underserved Disease
My name is Eron. I am the mom of a child with multiple food allergies. I help other families of children with food allergies gain access to food allergy oral immune therapy. My goal as an food allergy advocate is to create awareness and bring positive changes for those living with food allergy.
When my daughter *Cecelia was first diagnosed with multiple food allergies, we were introduced to the world of label reading, avoidance, food anxiety and the reality of social isolation that exists when you have a food allergy. People with food allergy live in a world of "No". No you can't have the donuts at church. No you can't have the birthday cake at the party. No you can't eat any food at the party because we don't know how it was prepared or who made it. No you can't eat at that restaurant, no you can't have the special snack, no...no...no...
Currently there are not clear strict regulations on the food labeling requirements, for example cross contamination exists when food is processed in the same facility or on the same equipment. While many manufacturers do provide this information to keep consumers safe, the lack of this requirement puts people with food allergy at risk for exposure to their allergen which can result in anaphylaxis. Anaphylaxis can be a severe life threatening allergic reaction that can occur within seconds to minutes, or it can be delayed occurring hours after exposure. The only lifesaving treatment to anaphylaxis is epinephrine. Epinephrine injectors are prescribed by a physician and are filled through a local or specialty pharmacy. The costs with insurance depends on your plan, however the cash price costs (per GoodRx*) ranges from $100+ to $500+. As well, many emergency medical services to not carry stock epinephrine in their mobile unit further putting lives at risk, as anyone can develop an food allergy at anytime, and may not be prepared with an epi-pen to administer.
There is currently only one FDA approved treatment for food allergy that is an oral immune therapy to desensitize pediatric patients to peanut. Many plans do not have a utilization management criteria for this particular product making patients access to this medication difficult. A few physicians across the country offer non FDA approved. food oral immune therapy options to help patients desensitize to their allergens.
Many people living with food allergy follow avoidance recommendations from their physicians. Avoidance is great until its not, making avoidance not a true option, as it is largely impossible to avoid all food allergies all the time. It is even more so difficult to avoid your food allergens when many food labels lack clarity and specificity.
The social isolation and anxiety for people living with food allergies is very real. Unless you avoid family get togethers, holiday celebrations, visits to family members homes, restaurants, work events, school, weddings, etc. avoidance at all times is impossible Many people with food allergy are afraid to travel due to food anxiety. Children are sitting alone at the nut free table, as if nuts are the only food allergy concern. This "nut free table" practice ignores those allergic to dairy, wheat, egg or any of the other top 9 allergens. As well, many schools do not carry stock epinephrine or until recently had a school nurse.
As a parent, caregiver and member of the food allergy community, all of these issues listed above make it clear that overall, food allergy is not largely recognized as a true life threatening condition. Nor is mental impact that food allergy has on those affected recognized.
While there is promise of treatments and research currently in progress, and on the horizon, I would like to see change across the board related to food allergy awareness, prevention and treatment.
My Motivation and Inspiration
My motivation comes from my own child. I have watched her courageously manage her food allergies and all the anxiety and isolation that comes with it. She completed food oral immune therapy for peanut, before there was an FDA approved product available - but this only covers one of her many allergies. . She has had more blood draws that i'd like to count, completed 3 food challenges so far, facing each one scared to death, choosing to be brave, and there's more to come. She's not often invited to social events where I am not also included. I have watched the sadness on her face at many birthday parties. We have been at a restaurant and she has chosen to go hungry instead of eating, choosing not to take the risk. While she is young now, and it's easier to over-compensate for these types of specific circumstances by preparing ahead of time, the older she gets and into her young adulthood this will be much harder.
Many people would never know the challenges she deals with everyday because as a family, we teach her to advocate for herself. She is learning how to ask questions, say I am "not able" to eat that, order in a restaurant, read labels, etc. We do not participate in pity parties, or look for sympathy. We want acknowledgment that having a food allergy might not be the debilitating disorder that everyone can see, but is truly life threatening. The mental impact on her each day wondering if taking a bite of cookie, not washing her hands regularly because a friend had an almond butter sandwich, or eating in a restaurant could cause her to die is very real.