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From Tragedy to Allergy Accommodations

December 30, 2013 – Looking back over 2013, it was a roller coaster of a year for the food allergy and celiac communities. Those highs and lows were evident in our coverage at Allergic Living magazine.

When you say a “low” with food allergies, our readers know instinctively that this is a reference to tragedy. There was too much loss of precious life to anaphylaxis in 2013. From the series of young people we lost in the spring [1] to the high-profile death of teenager Natalie Giorgi in July, we all shared in the pain of grieving parents and in the promise to do more to raise awareness of anaphylaxis.

Natalie’s death, in particular, galvanized the community. It was shocking to consider that after accidentally eating a bite of a peanut butter dessert, the 13-year-old at first felt no symptoms, then 20 minutes later was in the midst of a full-blown – and ultimately fatal – anaphylactic reaction. At Allergic Living, we needed to report on this tragedy for our community, but I felt a responsibility to do more than just aggravate fears among parents of allergic children.

Our readers themselves presented a way to report – and also help them. They had so many questions after Natalie’s passing, many of which had to do with when – exactly – to give epinephrine. (Natalie had been given antihistamine in the early stages of her reaction; epinephrine was only administered later.) We turned to two leading allergists – Dr. Robert Wood and Dr. Susan Waserman – for their knowledge, and the resulting Q&A article [2] was powerful and filled with helpful insights. It became our most shared article of the year, for good reason.

We heard again and again from readers that this article was important in their lives and that they and their children would be more vigilant and use epinephrine without hesitation in a reaction. They shared it with friends, family, teachers and neighbors. I hope the awareness that Natalie’s tragedy brought forward through this article offers her family even the smallest measure of comfort.

While tragedy strikes us most deeply, fortunately the year also contained much good news, and considerable progress for the allergy and celiac communities in terms of accommodations.

Colleges Get Allergy Aware

The year began with a bang – a settlement the U.S. Department of Justice reached with Lesley University [3] in Massachusetts with huge implications.

Here’s what happened: a few students with celiac disease launched a complaint to the DOJ about the university forcing them to buy the meal plan with no gluten-free options. The DOJ decided the complaint had merit under the Americans with Disabilities Act, and the university ultimately agreed to a list of concessions and paid $50,000 in damages to the students. Today, Lesley U. provides gluten-free and allergy-friendly meal options, has staff trained in allergy safety, signage and allows students to pre-order safe meals.

Technically, this was a settlement with one university. But it has created a ripple effect. Colleges have taken notice, since if ADA-based disability rights apply to one university, surely they’ll apply at another.

Next: Safer Dining Strategies; School Accommodations Boost

Situations like this also encourage institutions to act of their own accord. By summer, as Allergic Living undertook a survey of universities and their accommodations for our Fall 2013 edition, we were surprised to be writing a cover headline that said “Free-from meals and educated chefs are the new normal” at colleges. It wasn’t every institution, but the level of on-campus accommodation was far better – in some cases, it was enlightened and impressive – than we had anticipated. (See our U.S. colleges [4] accommodations chart and our Canadian universities [5] accommodations chart.)

During our research, our writers met many caring individuals – people like chef Tom Murray at Eastern Michigan University. He takes pride in being able to customize a meal for a student’s special needs, and will even cook from a student’s own recipes on request. We were encouraged to find there were others like him at universities across the United States and Canada.

Safer Dining Strategies

Restaurant awareness also got a big boost this year. In July, FARE (Food Allergy Research and Education) and the National Restaurant Association announced that they’d partnered to launch a food-services online training course as part of the association’s big ServSafe food safety program. It’s good news that will lead to thousands of kitchen staffs learning the processes that will keep you and your loved ones safe while dining.

Meantime the National Foundation for Celiac Awareness’s GREAT kitchens training program turned up the heat on gluten-free preparation knowledge with a 10-city “chef’s table tour [6]”, featuring Chef Jehangir Mehta, owner of New York City’s Graffiti restaurant.

As well, Paul Antico, founder of the AllergyEats.com [7] allergy-friendly restaurant directory, reports that his second annual restaurateurs conference in Boston was a big hit, with representatives attending from chain and independent restaurants, universities and contract food services (e.g. sports facilities). “Already we’ve heard from many attendees that they will be coming back, likely bringing colleagues,” he says. Awareness in the restaurant industry is growing and evolving, and as Martha Stewart used to say, “it’s a good thing”.

In our Summer edition, Allergic Living brought readers our Road Trip Eating Out Guide [8], which drove home the point that there are now an impressive number of chain and independent restaurants with the knowledge, training and caring attitude to safely serve those avoiding allergens or gluten. (We always love hearing about good dining experiences, so feel free to share your own by writing to editor@allergicliving.com [9].)

School Accommodations Boost

October turned out to be a monumental month for food allergy management in the schools. First, the Centers for Disease Control and Prevention released the long-awaited U.S. federal guidelines [10] on managing food allergies at school.

I was impressed by the breadth of knowledge reflected and the level of detail. There is focus in the guidelines on inclusion, whether in the class, the gym or on a field trip. There is the recommendation that schools avoid allergenic food in experiments, parties and as rewards (the latter being music to my ears). When it comes to staff training on managing allergy emergencies, even the bus driver is included.

While these are voluntary guidelines, they bear the advice of key stakeholders (FARE, the National Association of School Nurses, AAFA, etc.). Most importantly, they carry the weight of the CDC’s sanction that school districts are unlikely to ignore.

Next: Stock Epinephrine Laws; Looking Forward to 2014

The other big news this year is the passing of several state “stock epinephrine” in the schools laws – there are now 28 such measures in place – as well as the federal U.S. “stock epi” bill. This New Year’s Eve, give a celebratory honk on your noisemaker to this achievement.

“Stock epinephrine” is the term for keeping an unprescribed epinephrine auto-injector on hand for use in an anaphylactic emergency. In the case of schools, this can arise when an allergic child doesn’t have an auto-injector immediately available or in a first-time severe reaction to a food or insect sting.

The federal law [11] encourages states to adopt their own “stock epi” laws by giving preference for certain grants to states that have such a law in place. In a bi-partisan effort, Senators Dick Durbin (D-IL) and Mark Kirk (R-IL) introduced the federal bill to the Senate after it was approved by the House of Representatives.

Stock epinephrine as a concept was born from a desire to protect allergic students at school, and it advances the idea of epinephrine as a safe emergency medication that anyone can help administer and that can save lives [12] when anaphylaxis strikes.

Moving into 2014, I look forward to further advances in regarding auto-injectors as the next defibrillators. And this is happening. From the state stock epi laws to a pilot project [13] in Hamilton, Canada, where restaurants will keep epinephrine on-hand for patrons, the world is getting a little safer and more allergy-conscious.

Looking back at the significant progress made in improving quality of life and safety for those living with food allergies or celiac disease, and looking ahead to the research in development to treat these conditions, it becomes clear: there is much to anticipate from 2014.