Open Letter to the Food Allergy Community
Emily Brown, Founder of FEI
How. Are. You?
These three small words dominated many of my conversations. I found it very difficult to find the words and respond to questions from white colleagues and friends.
How am I?
I am not okay. Hearing yet another black voice ignored ending in George Floyd’s death has triggered a familiar feeling, the deep sorrow of grief.
My First Experience Being Ignored
I think back to my first experience with racism. It was the early 90s in Dallas and I was in second grade. My family had a tradition of buying pizza from a local restaurant and playing board games on Saturday nights. My twin sister and I accompanied our father, a quiet, tall, brown-skinned man to the restaurant. When we arrived, there was a line for carry-out. We waited patiently in line for service. Finally, when it was our turn to place an order, my father stepped up to the counter and was ignored by the staff. The staff called the white man behind us forward to take his order. My father, who grew up in the Jim Crow south waited patiently. It was clear we were not going to be served and we left. Frustrated and confused, I asked my father why they would not serve us. My father simply said, “because we are black.”
When we returned home empty-handed, my father relayed the story to my mother. Our plans for a night of family fun quickly turned into a deep family discussion on racism and discrimination. My parents were vulnerable and honest. They recounted personal stories of racism and resilience. That night, I felt the deep sorrow of grief due to racism for the first time.
Systemic racism is more than one black family being ignored. It is ignoring a "class" of people.
Black families with health problems have been ignored for centuries and this is particularly prevalent for families with food allergies.
Ignoring Racial Disparities in Food Allergy
I am a black mother of children who bear the burden of allergic disease. My experiences mirror many black patients who manage the disease without voice, visibility, and access to resources.
“My voice and family were ignored.”
When I found it difficult to find safe, affordable, allergen-free food for my daughter, I turned to a national food allergy patient advocacy group with a mission to improve the lives of ALL patients with food allergies.
I participated in their walks and donated. When I asked for help, I was told there were no resources, and this (the health of my black child) was not a priority for their members.
I vowed there and then to never let this happen to another parent. I started the Food Equality Initiative six years ago to end the racial disparities in Food Allergy and we have a lot of work to do.
A recent study published in the Journal of Academic Pediatrics found strong associations between race/ethnicity and food allergy. Black children were 7% more likely to have food allergies compared to white children.
We Will Not Be Ignored
For far too long, white-led patient advocacy organizations have been hyper-focused on alleviating the challenges of the privileged and have failed to listen to the needs and priorities of patients who bear the overwhelming burden of the disease.
These failures reinforce health disparities that manifest in limited access to care and treatments, allergen-free foods, and emergency epinephrine.
Black children with food allergies are more likely to die from anaphylaxis than white children with food allergies. These Black Lives Matter!
Our voices, our families, and our health can no longer be ignored. We must take action.
Be the Change
Rumi says, “The wound is where the light enters.” The death of George Floyd has opened a new wound of racism and I am hopeful that the light will lead to lasting change.
Here are a few recommendations to lead the change we hope to see.
(1) Recognize that silence is not an option and action is demanded.
(2) Recognize that food allergy is not only/just a white disease.
(3) Patient advocacy and clinical institutions serving black and minority patient groups should embark on internal diversity and inclusion work.
(4) Support black-led organizations working to close the gaps in health disparities with financial resources, mentorship, and collaboration.
(5) Listen to black and minority patients. Prioritize their needs in research, advocacy, and programs.
“The time is always right to do what is right.”
We cannot continue to ignore black voices, black families and black health.
With gratitude,
Emily Brown