Which food allergy families aren't here? Which ones aren't being given a voice. That question rings in my heart every day. Here in New Mexico we have the highest rate of child poverty in the country and we are 49th in the states for child well-being...and yet my food allergy group is made up almost entirely of upper middle class white families.
I'm afraid too many food allergic kiddos are never seeing the advocacy they need because that advocacy is reserved for those of us with resources.
•Families with severe food allergies spend on average $4,184 MORE per year than those without. And what do food allergic families do who don't have that much extra income?
They have to make dangerous choices about their kids safety.
They have to send them to daycares with high caregiver turnover that don't understand or can't accommodate them.
They must skip possibly safer smaller private schools hoping for conscientious teachers at their local public one.
They have to hope there is a nurse on staff and that understaffed spaces won't ignore a possibly lethal reaction.
They go without epipens or carry expired ones and have to choose between an epi and an inhaler when they might need both to save their lives.
They must trust the label on foods that say may contain because they can't afford the fancy made under strict regulations fancy store foods.
They don't get to have that in depth talk with their allergist because there's no translator except the kiddo patient themselves.
They don't have a parent to stay home with the child who might prefer to be homeschooled because their food allergy is an anaphylactic contact or airborne one.
They see their pediatrician because they can't afford the trip to the six hour away allergist.
They don't go to summer camp because the food allergic kiddo one is an impossibility.
They deal with behavior problems stemming from food allergy anxiety without the help of a play therapist.
They don't send their mom as the state food allergy support group leader to the FARE national conference because she doesn't get any paid time off.
And it's not just money that is getting some children left out of the conversation. In our country there are these huge racial divides caused by years of segregation and inequality which continues.
If we want to include everyone and really come together as a food allergy community we have to see that the system we live in still separates kiddos by race. By acknowledging that we can fix it.
•Black children are more than twice as likely to have life-threatening food allergies as white children.
•Black children are also more likely than white children to have asthma. Asthma is the most significant risk factor for fatal outcomes from food allergic reactions.
• Asian American children are 40% more likely than the general population to have severe food allergies and yet they are 30 % less likely to be diagnosed.
So the stereotype that this is a rich white kids disability isn't true. What is true is that rich white families are most often the face of this disability. White middle to upper class families tend to hold the power positions in our community and they are often the first to get resources and accomodations.
This year I was at the FARE national leadership conference. It was practically a sea of white faces. Almost all of the people there representing the voices of their states were white women like me. When I addressed why the staff of this the largest national advocacy group was also so white...the CEO replied that anyone could apply on their website.
I wanted to know what they were specifically doing for the poor and for people of color who don't have the power or face already in the game. What are they doing to get them into that room and up in front?
This overwhelming disparity is true amongst every key player group in the food allergy world. Providers, Lab and Clinic Owners, Support Group Leaders, Children's Hospital Boards of Directors, Bloggers, Food Allergy Walk Organizers, Cook Book Authors, Board Certified Allergists, even the Kids Book Protagonists are overwhelmingly white and middle class.
When we talk about systemic racism and a disability that is all about a basic human right like food we have to talk about resources and access.
Percentage of families living in poverty by race:
26% of Blacks
23% of Hispanics
12% of Asians
10% of Whites
Native children aren't only underrepresented in the food allergy world, it's very hard to find statistics on them or where they fit into this story. We do know that according to the U.S. census American Indians and Alaskan Natives have the highest percentage of people living in poverty at a whopping 27%. That's over 1 in 4.
Only 8% of Black Americans live in a community with one or more grocery stores compared to 31% of whites. What do you do if you have life-threatening food allergies and no grocery store? But grocery stores won't fix the systemic racism of this problem because what do you do if you have a grocery store but no job?
•The rate of unemployment amongst Black Americans is double that of whites.
And back to those epipens. Epinephrine is the only medicine that will save your life if you are having food allergy induced anaphylaxis. Benadryl won't cut it. But what if you don't have insurance?
Uninsured Americans by Race:
30% of Hispanics
20% of Blacks
14% of Asians
10% of Whites
So while I agree that Mylan and Epigate is pretty much evil personified in their privilege and how it hurts food allergic children. What about the rest of us? What is our allowing these privilege disparities to continue...doing to these innocent kiddos and their families? Let's start seeing the problem so we can address and fix it. And not leave anyone out of our beloved food allergy community.
Ivy Rizzo MA
Food Allergy Support of New Mexico