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Your older son has a food allergy. How did you find out?
JJ: My son Eli was born in 2005 and he was diagnosed with a peanut allergy when he was 14 months old, which we determined after he ate a small piece of chicken at a Thai restaurant. He couldn’t catch his breath, he began gasping and sputtering. We didn’t have any auto-injectors with us. Why would we, as none of us had a known food allergy. All we had was Benadryl, and we got poor advice from our pediatrician; the office did not tell us to take Eli to the emergency room. We now have a different pediatrician, but I learned a lot.
Then at the age of 8, as the result of his participation in a clinical trial, it was revealed that Eli also has eosinophilic esophagitis (EoE) to peanut. He had to withdraw from the study which was very difficult. Having said that, our experience should not discourage others from making their own decisions about participating in clinical trials.
My son is now going to be a 5th grader. He’s only allergic to peanuts, so in some ways I feel fortunate. But I have seen him have reactions, I’ve seen him need an auto-injector, so I live it every day.
What other advocacy issues are on your plate?
JJ: We’re working to improve the emergency treatment of anaphylaxis within EMS. We want to get to the point where any ambulance, anywhere in the U.S., that responds to a 911 call is equipped with epinephrine and staffed with personnel who are authorized and trained in its use.
Labeling continues to be an issue. It resides with the FDA, but FARE continues to have a hand in issues in questions such as how can labels be simplified and provide more allergen information. Along those lines, your readers may have seen the recent press release from Senator Chris Murphy of Connecticut, along with Senators Blumenthal and Markey. FARE is supporting their letter to Acting Commissioner Ostroff at the FDA to expand FALCPA to include sesame as the 9th top allergen. We issued a statement of support, and there’s a quotation from Dr. Jim Baker [FARE’s CEO] in the press release.
Airline accommodations are also an issue. In 2014, FARE convened and continues to lead a working group of national patient advocacy groups to present a unified voice regarding the steps that the airline industry can take to better accommodate passengers with food allergies. We are pursuing several strategies to achieve these goals, including supporting federal lobbying efforts, dialogue with members of Congress and policy makers, and working directly with leaders in the airline industry. We hope to share more information soon.
We have also been working on laws that elevate food allergy training to be on par with other food safety components that restaurants are required to know. Just within the last year, we helped pass laws in Michigan and Virginia. Those states join Massachusetts and Rhode Island, which already had such laws. If you’re a food safety handler, you’re supposed to know a whole raft of things pertaining to food safety – from hygiene to safety to preventing food-borne illness. The idea is to include food allergens in that and the steps to prevent cross-contact. Now we have four states with laws on the books, and we want to see that expand.
These are all areas where we felt FARE needed to play a leading role and commit time and resources to help drive change. There are many other important local efforts, and we work to be a resource for those too even if we can’t always provide direct support.
Once you pass a law, isn’t there usually still work to be done?
JJ: Definitely. After a law is passed, we’re often continuing to offer advice and input. So I’m on a task force in California, another in Massachusetts. The portfolio is always full because a law gets passed and we keep going.
Lastly, families with food allergies often want to know: How can we help move some of these issues forward?
JJ: First, FoodAllergyAdvocacy.org is FARE’s Action Center. You can sign up to receive our action alerts, which are organized by zip code. So if you live in Wisconsin, you will get all that state’s alerts and the federal alerts, anybody can do that.
We are going to be launching action teams around the country, groups of people who can help FARE do outreach on particular issues at the state level. If somebody’s interested, they can sign up at FoodAllergyAdvocacy.org. They can contact me to say: ‘I live in West Virginia, when you’re ready to create a West Virginia action team, sign me up.’
But the most important thing to do is this: Pay attention to the activities and legislation happening in your state. Sometimes there are things that are directly of note to the food allergy community, and sometimes it’s not as direct. For instance, a bill coming up that would cut the number of school nurses in a state. School nurses are important, so we’d encourage people to support keeping school nurses. And there are many other examples.
I often meet people who think FARE has a staff of 100 or more, but we are not that big. So we need people to be the eyes and ears in their own community. It takes cooperation and coordination with our fantastic volunteers across the country. That’s really important.
For more on FARE’s advocacy work, visit FoodAllergyAdvocacy.org
2015 Honorees in The Allergy Advocates Series:
Tiffany Glass Ferreira: Razor-Sharp Humor Makes the Food Allergy Case
Lisa Horne: The Ultimate Food Allergy Connector
Kyle Dine: Musician’s Musical Message: It’s OK To Be Allergic
2014 Honorees in The Allergy Advocates Series:
Lisa Rutter: A Force of Good for Food Allergy
Karen Harris: Food Allergy’s Educating Dynamo
Cathy Owens: The Nurse Who Is the Allergic Student’s Protector
Jenny Sprague: Courageous Woman who Unites Allergy Bloggers
Gina Mennett Lee: A Voice of Reason for Food Allergy at School and Daycare
Lianne Mandelbaum: A Force of Nature for Safe Travel with Allergies
Anne Russell: A Nurse Driven to Improve Food Allergy Education