www.foodallergy.org #ContainsCourage
MAY 2019 NEWSLETTER
A publication of FARE, Food Allergy Research & Education
“I’m really excited to understand how other people who also have allergies deal with it.” –Rhett Needleman, age 13
In This Issue: Leadership Letter
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CONTAINS: COURAGE™ Campaign Corner
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“It’s Taught Me Maturity and Independence” 3 Stakeholders Meet at 2019 Research Retreat
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FARE Grants to Fund Community Groups and Programs
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Food Allergy Bill Introduced in U.S. House
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A publication of FARE, Food Allergy Research & Education
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foodallergy.org
LEADERSHIP LETTER
Dear Friends of FARE,
CONTAINS: COURAGE™
CAMPAIGN CORNER Lisa Gable Chief Executive Officer
Food Allergy Awareness Week is May 12-18, and our May 2019 newsletter is dedicated to fostering awareness of this ongoing epidemic. As we work to improve quality of life for all those with food allergy, research published in the past year has dramatically reshaped our understanding of the population we serve. In November 2018, a study in the journal Pediatrics confirmed that 5.6 million American children – 1 in 13 kids – have at least one food allergy. Furthermore, a companion survey published last January in JAMA Network Open revealed that food allergy affects more than 26 million U.S. adults, many more than previously thought. One in 10 Americans aged 18 or older has a life-changing and potentially life-threatening condition for which the only approved treatment is careful avoidance. This is unacceptable. Recognizing that the 32 million Americans with food allergy encompass individuals of every age, FARE is expanding our Contains: Courage™ Campaign to raise awareness on the true size and diversity of our food allergy community. From lifelong food allergy veterans to those first diagnosed in adulthood, we welcome your stories and hope you’ll help us share them. To learn more, visit foodallergy.org/containscourage. Food allergy awareness is at the center of this month’s feature article. Rhett Needleman, a young man with rare food allergies, describes the self-awareness he’s learned in managing those allergies and the awareness he has helped raised by volunteering in his schools and community. We also recognize more than 50 support groups and volunteer leaders who are receiving 2019 FARE Community Outreach Awards. The local projects and activities supported by these awards will carry our message of safety and inclusion to communities across the country. We welcome the introduction last month of federal legislation that would establish policies to address the growing public health challenges posed by food allergy. We thank all those who attended the FARE Research Retreat to share findings and perspectives on the path to new treatments, better diagnostics and effective approaches to prevention. And we honor your own efforts to raise awareness, this month and throughout the year. Warmest regards,
Lisa Gable
We are excited to announce the Contains: Courage™ Campaign’s expansion to embrace and showcase stories of courage from adults living with food allergies! This supports our campaign mission of imagining a world where everyone feels liberated, courageous and empowered to live a life free from fear and labels. The JAMA Network Open study identifying that food allergy affects more than 26 million U.S. adults – more than one in ten – also revealed that nearly half of those foodallergic adults developed at least one food allergy during adulthood.* It is vital we leverage the campaign to represent the current research and multitude of experiences within the food allergy community. We invite individuals of every age to submit to your photo and Contains: Courage™ “ingredients” list to containscourage@foodallergy.org. To learn more, visit foodallergy.org/containscourage.
The Stats • 11 percent of U.S. adults (>26M) have a food allergy • Nearly 50 percent of food-allergic U.S. adults developed at least one food allergy during adulthood • Almost 40 percent of food-allergic U.S. adults report at least one lifetime reaction that required emergency care • 45 percent of food-allergic U.S. adults are allergic to more than one food *‘Prevalence and Severity of Food Allergies Among US Adults. JAMA Network Open 2019 (population-based survey study of 40,443 U.S. adults)
“IT’S TAUGHT ME
MATURITY AND INDEPENDENCE” Photo: Jodi Buren, Tripp Street Studio
Millions of Americans are allergic to one or more of the eight most common food allergens, but 13-year-old Rhett Needleman knows that some food allergies are anything but common. After his tree nut allergy was diagnosed through testing at age 4, he explains, “I was 7 years old when I found out I was allergic to sheep’s milk the hard way. I had a really bad reaction. When I tested positive, I was one of only six people at all of [Icahn School of Medicine at] Mount Sinai to be diagnosed with sheep’s milk allergy, but okay with cow’s milk. I found out I was allergic to goat’s milk, too. With tree nuts, I haven’t had a very hard time, but sheep’s milk and goat’s milk have been really tough. They could be in salad or pizza or bread crumbs or pasta sauce, and many people aren’t aware of the difference between sheep’s milk and cow’s milk.” More recently, the seventh grader from Scarsdale, NY, was diagnosed with additional rare food allergies. Rhett has food-dependent exercise-induced anaphylactic reactions to milk, wheat, tomatoes and shellfish, which are foods he can tolerate if he’s not too active after eating them. For an avid athlete who plays lacrosse, basketball, tennis, football and squash, this creates further challenges. “If I eat those foods inside of a three-hour time frame before heavy exercise, there’s a high likelihood that I’ll have an allergic reaction,” he notes. “It’s happened on multiple occasions.” “It’s taught me maturity and independence. When I was younger, I was with my parents more, and they could help me. But over the past two years or so, I’ve been on my own a lot more, and I’ve had to always ask and learn and see and be careful instead of going right after food. It’s taught me patience. Other people may be eating already, but I have to make sure and find out if there’s something I’m allergic to in the food, because it could really cost me.”
FARE+Well Newsletter May 2019
Rhett has put these hard-won strengths to work in raising food allergy awareness at school and in his community. “Each year since third grade, I’ve volunteered to discuss food allergies with all the classrooms in my grade and to teach students how to use an EpiPen. Since fifth grade, I’ve met with the school nurse in the beginning of each year to strategize on a food allergy education program, and I’ve worked with my teachers to educate them on my food allergies and others. At my temple, we have tried to create menus that accommodate more kids, and I am working with my local shelter to offer a larger variety of foods that do not have common allergens.” This is Rhett’s first year as a member of FARE’s Teen Advisory Group (TAG), in which young people with food allergies work to make a difference locally and nationally. “The second I saw it, I knew I wanted to be a part of it. I’m really excited to understand how other people who also have allergies deal with it. Because there aren’t many people who have odd allergies like I do, and I would really like to get to know other people who have to deal with the same types of things that I do.”
Rhett’s food-dependent exerciseinduced anaphylaxis mean that some foods he otherwise tolerates will cause severe allergic reactions if he’s active too soon after eating them.
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FARE NEWS UPDATES RESEARCH, EDUCATION AND ADVOCACY STAKEHOLDERS MEET AT 2019
RESEARCH RETREAT Held April 13 in McLean, VA, the Seventh Annual FARE Research Retreat brought patient advocates together with investigators in academia, clinical care, industry and government to discuss findings, build partnerships and share the food allergy community’s perspective on current patient challenges and new directions for therapies, diagnostics and prevention. Presenters included five FARE Investigators in Food Allergy who received mid-career awards in 2015 and 2017, scientists developing innovative treatment approaches in the biopharmaceutical field, patient representatives from FARE’s Outcomes Research Advisory Board, and members of FARE’s senior leadership team. The gathering was attended by 120 participants. We thank DBV Technologies for their support in helping to fund the event.
FARE GRANTS TO FUND
COMMUNITY GROUPS AND PROGRAMS The Community Outreach Award program empowers volunteer leaders across the country to implement initiatives that educate others about the severity of food allergies and create lasting change in their local communities. These goals align with our Contains: Courage™ Campaign to support food allergy families, drive awareness, and give communities the tools they need to spread the word about food allergies. In March, FARE granted $62,625 in community outreach awards to 24 volunteer leaders nationwide. The funded projects include allergy-friendly activities for kids, teens and families; food allergy training for schools, camps, health care professionals and the general public; and media production to share food allergy stories more widely. An additional $13,500 was awarded to 27 support groups serving food allergy patients and families in 29 states. The number of individuals with food allergies continues to grow, with 32 million Americans now affected, but the FARE+Well Newsletter May 2019
prevalence and seriousness of food allergies are still not well understood. The Community Outreach Awards program helps fill this knowledge gap by funding volunteer-driven activities that carry our message to new audiences, helping us elevate food allergies as a serious public health issue. Special thanks to Community Outreach Awards supporter, Genentech.
FOOD ALLERGY BILL
INTRODUCED IN U.S. HOUSE On April 8, the Food Allergy Safety, Treatment, Education and Research (FASTER) Act, H.R. 2117, was introduced in the U.S. House of Representatives by Rep. Doris Matsui (D-CA). This package of federal policy changes seeks to improve the health, safety and inclusion of the 32 million Americans living with food allergies. The FASTER Act would: • Collect national information on Americans’ exposure to food allergens and the prevalence of food allergies to specific allergens. • Update allergen labeling laws to include sesame and add new labeling requirements for additional allergens as new scientific evidence emerges. • Expand current guidance on patient experience data to include food allergies. • Study the economic costs of food allergies. The FASTER Act’s policy proposals reflect the findings of an expert panel convened by the National Academies of Sciences, Engineering and Medicine (NASEM). Released in November 2016, the landmark NASEM consensus study recognized food allergy as a critical public safety issue and offered guidance to federal legislators and executive branch policymakers. The introduction of the FASTER Act caps more than a year of legislator education, policy refinement and advocacy by FARE, resulting in legislation that would improve the lives of millions of Americans and their families. Stay tuned for updates.
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