FARE+Well Newsletter - February

www.foodallergy.org #ContainsCourage

FEBRUARY 2019 NEWSLETTER

A publication of FARE, Food Allergy Research & Education

“If they care, they’ll make the effort to keep you safe.”

–Allison Davin, age 21 Read more on page 3

In This Issue: Leadership Letter

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Calling All Sports Fans!

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“If You Don’t Speak Up, No One Will Know There’s a Problem”

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Advocacy Update on Sesame Labeling

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: COUR S N I A T CON

A publication of FARE, Food Allergy Research & Education

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foodallergy.org

LEADERSHIP LETTER

Dear Friends of FARE,

CALLING ALL SPORTS FANS! Lisa Gable Chief Executive Officer

We wish you and your loved ones a safe and fun-filled Valentine’s Day. This edition of FARE+Well features a young adult’s perspective on how food allergies can impact the holiday’s romance, as university junior Allison Davin offers tips and insights on college life and dating. Also this month, we report on advocacy to protect an estimated 650,000 Americans by labeling sesame ingredients in plain English.

In research news, a study whose authors include FARE medical advisors Dr. Ruchi Gupta and Dr. Kari Nadeau has found that more than one in ten U.S. adults report convincing food allergy symptoms. The rising prevalence of food allergy is also reflected in a recently released chartbook created with FARE’s support by FAIR Health, an independent nonprofit that manages the nation’s largest database of private health insurance claims. Visit foodallergy.org/stateclaimsdata to view claims data infographics for each state and the District of Columbia.

Among the states shown in FAIR Health’s data to be experiencing marked increases in severe food allergy reactions are Georgia and Wisconsin, where medical procedures to treat food allergy anaphylaxis were up 146 percent and 75 percent, respectively, between 2009 and 2016. We welcome to the FARE Clinical Network two food allergy centers dedicated to serving these communities, at Emory University/ Children’s Healthcare of Atlanta and the University of WisconsinMadison. Our network of leading institutions that provide exceptional patient care and clinical trial enrollment now includes 33 centers of excellence in 19 states and Washington, D.C. As we recognize the scope of the food allergy epidemic, there has never been greater need for effective treatments, prevention and a cure. To meet that need, our Contains: Courage™ Campaign is raising historic levels of funding to transform food allergy care, research, education and awareness in every state. Thank you for your generous support.

We are thrilled to announce new ways of getting involved with our Contains: Courage™ Campaign in major cities across the country! FARE is partnering with eight National Basketball Association teams for Contains: Courage™ Nights – unforgettable evenings of hoops and fun. When you purchase a Contains: Courage™ Night ticket to any of the NBA games listed below, you will enjoy discounted game tickets, special pregame activities and giveaways.* A portion of each ticket sold will be donated to FARE. Ingredient information will be made available at select concession stands, and at least one concession stand per game will be nut-free. You don’t need to have a food allergy to participate, so feel free to share this great opportunity with your community! Learn more at foodallergy.org/containscourage.

PARTICIPATING GAMES: ●● March 1 - Brooklyn Nets (vs. Charlotte Hornets) ●● March 3 - Chicago Bulls (vs. Atlanta Hawks) ●● March 9 - Atlanta Hawks (vs. Brooklyn Nets) ●● March 9 - New York Knicks (vs. Sacramento Kings) ●● March 16 - Dallas Mavericks (vs. Cleveland Cavaliers) ●● March 23 - Washington Wizards (vs. Miami Heat) ●● March 30 - L.A. Clippers (vs. Cleveland Cavaliers)

Warmest regards,

●● March 30 - Phoenix Suns (vs. Memphis Grizzlies)

Lisa Gable

*Included benefits differ between games, please read each ticketing page carefully for details.

“IF YOU DON’T SPEAK UP, NO ONE WILL KNOW THERE’S A

PROBLEM” For their first kiss, most teens don’t plot out their partner’s pre-smooch meal. But when Allison Davin rehearsed a stage kiss for a high-school play, she knew to plan ahead. She told her fellow cast member that she couldn’t kiss him for several hours after he ate milk, egg, beef, peanut, lamb, sesame, carrot, strawberry or nuts. He’d also have to brush his teeth and eat an allergen-free snack as a palate cleanser. Years later, when a young man ordered a dinner of lettuce, oil and vinegar on their first date, Allison knew that solidarity wasn’t the only reason. He also hoped to end the evening with a kiss.

An architecture major on a semester abroad in Rome, Allison, age 21, has years of self-advocacy under her belt. Launched in 2012, her Allergy Alli blog (allergyalli.wordpress.com) has shed light on teen life with food allergies. “It wasn’t teens reading at first, it was moms of teens and moms of kids.

But over the years I’ve received emails and comments from people my age or younger, saying ‘I’m so glad I found this, I can’t believe there are other people out there!’” She also wrote about food allergies, including her involvement in FARE’s Teen Advisory Group, on her college application essay.

Allison (left) and co-presenter Anna Masciola discussed college and food allergies at FARE Teen Summit 2017 in Newport Beach, CA.

FARE+Well Newsletter Feb. 2019

Following her freshman year at Catholic University of America, Allison co-presented at FARE Teen Summit 2017 with another student, Anna Masciola, about managing food allergies in college. Allison shared her college search based on academics, the dining and residence accommodations she requested months in advance, the work required to get what she needed, and the dining hall cross-contact that led to a reaction and a hospital visit.

“I think it was a wake-up call for dining services. We had a lot of meetings. They told me about things they were going to change, and then said, ‘You have a lot of experience with food allergies. We should hire you.’ So now I’m a marketing intern for dining services. I make marketing posters, but I also help them be more prepared and more aware of how they’re serving food.”

In 2018, Allison and Anna returned to FARECon featuring Teen Summit. In addition to a session on college with Julia Gray, they also gave a new session on dating with JJ Vulopas and Dr. Amaziah Coleman. “Self-advocacy comes up a lot, both for dating and going to college,” explains Allison. “It’s hard and it’s scary. But if you don’t speak up for yourself, no one else will, and no one will know there’s a problem.”

“What’s great about food allergies is that they’re a screening process for people who are worth your time. Being a teenager and having a crush is embarrassing in the first place, and telling them ‘I can’t kiss you if you’ve eaten my allergens in the past few hours’ kind of kills the mood. But if they care about you, they’re going to make the effort to keep you safe.

And if they aren’t going to make the effort, and they don’t seem to care, is that someone that you want in your life?

Probably not.”

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ADVOCACY UPDATE ON

SESAME LABELING In a joint letter to the U.S. Food and Drug Administration (FDA) on Dec. 21, FARE and nine partner organizations – Asthma & Allergy Foundation of America, Allergy and Asthma Network, American Partnership for Eosinophilic Disorders, Center for Science in the Public Interest, Campaign Urging Research for Eosinophilic Disease Foundation, End Allergies Together, Food Allergy & Anaphylaxis Connection Team, International FPIES Association, and The FPIES Foundation– called on FDA to require the labeling of sesame as a major allergen in packaged foods.

Allergy to sesame is the ninth most common food allergy, affecting an estimated 500,000 adults1 and 150,000 children2 in the U.S. Reactions to sesame are often severe: in recent surveys, one-third of children2 and nearly one-third of adults1 who reported a sesame allergy also reported visiting an emergency room for a reaction in the past year. Despite this, sesame does not need to be labeled in plain English under the Food Allergen Labeling and Consumer Protection Act. This makes sesame allergy harder to manage in the U.S. than in places that require sesame labeling, such as Canada, Australia, New Zealand and the European Union. Because sesame can be labeled as natural flavor, natural seasoning or spice, Americans with sesame allergy avoid these common ingredients, further restricting their diets and lowering their quality of life.

For years, FARE and fellow food allergy advocates have pushed for sesame labeling, helping community members share their experiences with representatives and regulators, and petitioning Congress and agencies to act. The 2016 National Academies of Sciences, Engineering and Medicine consensus study on food allergy, conceived and initiated

by FARE, finds that “evidence of the allergy prevalence and FARE+Well Newsletter Feb. 2019

reaction severity to sesame seeds may warrant their inclusion on the priority allergen list.”3 These recommendation may soon yield results, as FDA is now considering regulations to require that sesame be labeled as an allergen on packaged foods.

To inform its decision, FDA requested public comments in late October 2018 on the prevalence and severity of sesame allergies. FARE and allies reached out to community advocates, who responded by delivering more than 8,700 comments before the Dec. 31 deadline. In addition to the joint letter, FARE submitted a comment signed by the directors of the 33 food allergy centers of excellence in the FARE Clinical Network, who asked on behalf of their patients that FDA recognize sesame as a major allergen and require that it be labeled accordingly.

We thank all of you who submitted comments to FDA to improve the lives and safety of Americans managing sesame allergy. FARE will keep the community posted as we learn more.

Gupta RS, Warren CM, Smith BM, Jiang J, Blumenstock JA, Davis MM, Schleimer RP, Nadeau KC. Prevalence and severity of food allergies among US adults. JAMA Network Open. 2019;2(1):e185630. doi:10.1001/jamanetworkopen.2018.5630. Epub 2019 Jan 4.

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Gupta RS, Warren CM, Smith BM, Blumenstock JA, Jiang J, Davis MM, Nadeau KC. The public health impact of parent-reported childhood food allergies in the United States. Pediatrics. 2018 Dec;142(6). pii: e20181235. doi: 10.1542/peds.2018-1235. Epub 2018 Nov 19.

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National Academies of Sciences, Engineering, and Medicine.

2016. Finding a path to safety in food allergy: Assessment of the global burden, causes, prevention, management, and public policy.

Washington, DC: The National Academies Press.

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