Kansas City Mom Wants To Help More People Proclaim Their 'Allergy Pride' | KCUR

Kansas City Mom Wants To Help More People Proclaim Their 'Allergy Pride'

Sep 29, 2018

Emily Brown's lifestyle acutely changed when her two young children were diagnosed with severe food allergies.

“For kids and individuals living with food allergies, it can be isolating. You are reminded every time you sit at the table that you can’t have something," said Brown. "We tend to celebrate with food in our society, so food is everywhere — for the holiday, the birthday, celebrations at work and school.”

For the Kansas City mom, sending her kids to school and those birthday parties requires extensive planning, because if they come in contact with food allergens, the consequences could be severe. Reactions can range from discomfort such as an itchy throat and hives to life-threatening anaphylactic shock.

Brown's family is not alone. Approximately 15 million Americans suffer from at least one food allergy, according to Food Allergy Research and Education (FARE). 

Although food allergies are becoming increasingly common — researchers report an increase of more than 50 percent in the past decade — it's still difficult to live with a severe food allergy.

Consumers must read every label, always speak with the chef at restaurants, and sometimes, if the allergy is severe enough, purchase a pricey epinephrine auto-injector in case they accidentally ingest an allergen.

That lifestyle is also difficult to afford. The only truly effective way to treat a food allergy is to simply avoid the allergen at all costs. But what is that cost?

Many lower-cost foods are produced in facilities where other allergens may be present. For many people, this potential cross-contamination proves far too great a risk to their health. But many families can't afford to always buy the safer, name-brand.

Brown said she struggled to make ends meet when providing for her kids with food allergies, and she's not alone in that area, either. Caring for children with food allergies costs U.S. families nearly $25 billion annually, according to FARE.

Impact of Food Allergies on a Budget
Credit Food Equality Initiative

Brown also said insurance companies do not consider buying safe food to be part of the treatment for a food allergy diagnosis, so it is typically not covered in medical plans. She enrolled in federal assistance programs such as Women, Infants, and Children (WIC) and Supplemental Nutrition Assistance Program (SNAP), but was still not able to gain access to the allergen-free food she needed.

“If we did not have these food allergies, we would not be in this situation. I am living this and I am still living this,” Brown said.

Four years ago, Brown took matters into her own hands, founding Kansas City's Food Equality Initiative to help families gain access to allergy-friendly food. The organization runs a pantry that serves low-income people with food allergies and Celiac disease.

This was the first of its kind in the United States, but now there are pantries all across the country following FEI's model of providing allergy-friendly foods.

RAYGUN T-Shirt
Credit RAYGUN

"Many of the clients that we serve, the families we serve at the pantry, they have difficulty affording the food consistently," Brown said. 

In the 2016-2017 year, FEI distributed more than 10,000 food items, at a total retail value of more than $40,000. 

FEI strives to alleviate the financial stress of caring for someone with food allergies, while also advocating for legislation to address the pervasiveness of food allergies and change government policy to make food sources such as WIC more inclusive in their coverage.

In a recent effort to put more healthy and safe food on the shelves, Brown's organization has designed a shirt with RAYGUN displaying the slogan: "Overachieving Immune System."

"We are really excited about the shirt because we think it helps people show a little bit of allergy pride," Brown said.

"If you've got a food allergy, really it is your immune system overachieving, and so there is a little humor in that."

Emily Brown spoke with KCUR's Central Standard on Thursday. Listen to the full conversation here.

Sofia Gillespie is an intern for KCUR's talk show Central Standard. Reach out to her at sofia@kcur.org.