Why I Believe Advocacy Is a Journey, Not a Destination!

Co-founder of the Allergy Advocacy Association, Toni Taylor and I are working to create a clearinghouse for allergy and anaphylaxis information by using a program of awareness, alertness and action. We have made progress at the local, state and national level, yet ignorance and apathy remain a threat to individuals and families with life-threatening allergies. We must honor what we have accomplished and keep moving forward to raise awareness of dangerous anaphylactic reactions.

Why I Believe Advocacy Is a Journey, Not a Destination!

By Jon Terry
April 15^th, 2023

Greetings. I sincerely hope you are enjoying the spring season.

"Are we there yet?" I often think about my life in terms of "arriving," especially "on time" and at "the right location." By setting a "destination" for myself sometimes I can get my personal journey started and work steadily towards finishing what I have to do to get there. Sometimes. However, I often find myself growing tired of the road I've taken, that my journey is taking too long and I need to stop. I don't turn around and return to my starting point. I simply want to get off this road, onto another one and start a new "journey!"

As the co-founder of the Allergy Advocacy Association I want to raise awareness of the dangers of anaphylactic reactions for individuals and families with life-threatening allergies. But nowadays I think "allergy advocacy" has become a lot more complicated. That's because of disinformation, fake news and misconceptions about life-threating allergies are so persistent in America. Even after a lot of time, money and hard work by activist advocates to provide data and information from proven, reliable sources, misconceptions are a serious issue.

Accurate up-to-date information about allergens and anaphylaxis is what the Allergy Advocacy Association is all about. We make it our business to set the record straight whenever we encounter data we know is wrong. Our association has a responsibility to the advocacy community to ensure they have the facts they need. And we understand that advocacy is a journey that has no final destination.

A few misconceptions I hear often:

"Food allergies are a life-style choice, not a public health issue."

"Only a few people even have food allergies so what's the big deal? It's not a major health issue."

"How can food allergies be a problem when so few people get sick and die from it?

"People who make an issue out of food allergies are only doing it to gain attention and make money."

"It's somebody else's problem, not mine. They should just deal with it."

These statements do have some validity; it's true that morbidity from life-threatening allergies is pretty low. However, year after year the number of people who are diagnosed with anaphylaxis has continued to increase. And many people are untested and even unaware of their food allergies.*

Food allergy is among the diseases considered to be part of the Atopic March. Also known as the Allergic March, this term refers to the progression of allergic diseases in a person's life: eczema, food allergy, allergic rhinitis and asthma.*

Food allergies are usually considered disabilities under the American Disabilities Act (ADA). Under the ADA, students who have food allergy are considered to have a disability which restricts their educational opportunities and quality of life.*

The health of the population as a whole, especially as the subject of government regulation and support, is the definition for public health. The branch of medicine dealing with hygiene, epidemiology, and disease prevention.*

So, as I see it, if food allergy is a disease and a disability affecting literally tens of millions of Americans, then it's public health issue. Of course food allergy is first and foremost a private health issue but certainly not exclusively so. Everybody must be aware, alert, and ready to take action when an anaphylaxis emergency happens.

For several years now, co-founder and Executive Director, Toni Taylor and I have been working to create a clearing house for allergy and anaphylaxis information. To do this we use a program of awareness, alertness and action. While we center our work in Monroe County in western New York we’ll travel anywhere within the state and nation to spread awareness to all who need to hear to pass legislation at the national level as well as support our colleagues’ efforts in other states.

Now that the spring season has finally sprung, I want to talk about two major events, one that happened a few weeks ago and the other in May. In March, I attended the Food Allergies Research and Education (FARE) Courage at Congress lobby day in Washington, DC. Second, Food Allergies Awareness Day NY in Albany, NY will be held on Tuesday, May 2nd. Both are important events for our association. Joining coalitions of like-minded advocates and non-profit organizations, we seek support for legislation that will protect the public from anaphylaxis medical emergencies. And thanks to the patience and persistence of many, real progress at the local, state and national level has been the result.

Ignorance and apathy will always remain a threat to individuals and families with life-threatening allergies. This means activist advocates like me will always have a potential audience for raising awareness of dangerous anaphylactic reactions. This audience-in-waiting doesn't understand, but they will. As advocates, we can honor and build upon what we have already accomplished as our journey moves forward. Let the results motivate us all to continue this journey!

See you in Albany! If you haven’t done so already, you can register here. Many thanks to those that have already registered. We look forward to working with you.

Best wishes!

Jon

*Data provided by:
American Academy of Allergy, Asthma & Immunology (AAAAI)
American College of Allergy, Asthma and Immunology (ACAAI)
Americans with Disabilities Act (ADA)
Centers for Disease Control (CDC)
Food Allergies Research and Education (FARE)