Eleven years ago, when Peyton was rushed to the emergency room after eating a cashew, our lifestyle as we knew it changed forever. Gone were the days where my family could carelessly eat wherever and whatever we wanted. Gone were the days where I could carelessly eat a PB&J (my favorite when I was pregnant with Peyton). Our new reality was only beginning.
You may think that the American food allergy experience is fairly straight-forward. You have an allergic reaction, you get tested and diagnosed with a food allergy by an allergist, you avoid the food allergen, and you carry epinephrine in case of emergencies. While that is not completely incorrect, it leaves out a whole lot of steps that quickly add up.
Imagine going to a foreign country not knowing the language and needing help with directions. This is what it felt like for my husband and I in April of 2010. When we walked into our local grocery store, we stood there clueless, not knowing where to begin. Being told that our daughter has a severe food allergy to peanuts, tree nuts, and a mild allergy to egg yolk and dairy, we were overwhelmed with figuring out how to feed her. The doctor told us we needed to avoid these foods but did not tell us how! How does one shop for safe foods? Where are they in the store? What foods have hidden allergens in them?
Plus Step 2
The doctor also told us that Peyton must always carry an EpiPen (name brand for epinephrine auto-injector, used for treating anaphylaxis), and preferably have one for use both at home and at school. (Medical professionals recommend carrying 2 EpiPens at a time. One dose may not be enough to stop a severe reaction.) She would need at least 3 to 4 EpiPens in order to cover each location where she spends extended time.
Eleven years ago, my insurance company did not cover the cost of EpiPens, and my family’s finances were not in a place where we could easily afford unexpected expenses out of pocket. To think about shelling out at least $400 for EpiPens (an emergency medication, not even a day-to-day treatment) was mind blowing!
Equals Step 3
As a mother, I had to take a step back and reflect. Purchasing safe, free-from foods added an awfully high expense to our family’s budget. My husband and I knew that this was going to be a challenge for us. I asked myself how we would be able to afford Peyton’s food, not to mention her EpiPen! The expenses kept adding up with no end in sight. We struggled to afford it.
Not only did we sometimes have only one EpiPen, sometimes we went without being able to afford one at all, and that was terrifying. The next year in 2011, Peyton’s brother was diagnosed with a fire ant allergy. That required him to need an EpiPen as well, which meant paying $800 a month for life saving, emergency medication for my children. Not to mention, all three of my children and I have asthma. Our insurance charged out of pocket $50 for each inhaler. We did not realize this would become our reality that fateful day eleven years ago with a ‘simple’ food allergy diagnosis.
What is the All-American Food Allergy Experience?
I say all of this to express that not every American’s Food Allergy Experience starts out with the proper guidance, knowledge, and help that one might expect. After leaving the emergency room that day, my husband and I were left alone to figure out how to read ingredient labels for allergens, navigate the grocery store, find the right allergist for Peyton, and access affordable medication. There were no support groups offered, no pamphlets, nothing to help support me through this life changing process. Often, I felt alone, and I still feel alone as a parent trying to do my best for my daughter.
Black, Hispanic, other minority groups, and children are more likely to have food allergies and asthma than white Americans. Often, as you can see in my personal story, visits to the ER are higher for minorities. This is due to a combination of the lack of access to: free-from foods, insurance coverage of life-saving medications, and professional healthcare.
These circumstances are not unfamiliar to people living in economically disadvantaged communities of minorities. These are problems that we are faced with every day. This was my family’s All American Food Allergy Experience for many years. Even though the cost of medication has decreased and we have found an affordable allergist for Peyton, we are still facing disparities and discrimination in healthcare even now, eleven years later.
The Future of Food Allergies in America
Eleven years ago, I wished there were resources around like FEI that could help me with accessing safe foods for my daughter. There is also a critical need for advocacy and support groups to help educate families about how to live a life free-from common foods. I had no one to walk with me, and show me how and what to look for. That is why I am using my voice now.
Since the beginning of Peyton’s diagnosis, I have made it a point to educate myself as much as I can. I learned how to be an advocate for my daughter. Best of all, I have taught her how to advocate for herself! This was the driving force behind my initiative to start Peyton’s Allergy Shield of Hope.
Everyone should have the same attentive, affordable, and accessible experience with healthcare. Every adult and child regardless of race and economic status should have the same access to resources to help manage food allergies. We should all feel accepted in the food allergy community, not because we have means to afford the costs, but because we share a common need to live an allergy-safe lifestyle.