FARE Newsletter Spring 2013

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Food Allergy S prin g 2013 • Volu m e 23 • Issue 1

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Going to College with Food Allergies Implications of the Lesley University settlement

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cross the country, high school seniors have received their college acceptance letters for the fall. For many, enrolling in a college or university will be the first time these incoming college freshmen will be managing their food allergies away from home. New guidance from the U.S. Department of Justice (DOJ) provides valuable information for prospective college students and their parents about their rights to accommodations.

This past winter, a settlement between Lesley University in Cambridge, Mass. and the DOJ

made headlines—it was the first food-allergyrelated settlement in higher education under the Americans with Disabilities Act (ADA). The settlement agreement ensures that students with food allergies and celiac disease can “fully and equally enjoy the university’s meal plan and food services in compliance with the ADA,” according to the DOJ. How exactly might a settlement reached between a Massachusetts university and a group of its students affect other college students with food allergies? In the wake of the settlement, the DOJ released a technical assistance document with questions and answers about the agreement and potential implications for individuals with food allergies. These public documents clarify that protections of the ADA and Section 504 of the Rehabilitation Act apply to college students with food allergies, said disability attorney Mary Vargas of Stein & Vargas.

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“Pursuant to these federal civil rights laws, universities must not merely allow students with disabilities to attend; instead, universities need to ensure that students with

DA Foc uses o n fo o d aller g e ns 03 F T he U.S. Food and Drug Administration is considering two issues of great

importance to the food allergy community –preventive controls and thresholds.

04 U PCO M I NG EV EN T S

Stay up to date on FARE’s upcoming conferences, Walk for Food Allergy events and other events.

disabilities have full and equal access to all of the programs, activities and benefits of the university,” Vargas said. “The settlement and the Q&A put universities on notice that students with food allergies must be provided with meaningful and safe access to dining services.” Vargas also said that universities that deny a student with a food allergy full and equal access to the benefits and services it offers to other students, including access to dining services, would be in violation of federal civil rights laws. Scott P. Moore, who represents colleges and universities in ADA matters with the law firm Baird Holm, said it’s important to understand that the Lesley University settlement does not have any legal precedent, but rather it demonstrates what the DOJ believes is important in accommodating students with disabilities. “The settlement reinforces the fact that colleges and universities must ensure that they accommodate students with food allergies if those food allergies rise to the level of a ‘disability’ under the ADA,” Moore said. “There is no question that the Lesley University settlement reminds universities that they must accommodate students with disabilities under ADA. The question is not c o n t i n u e s o n pa g e 1 0 >

06 Ing r e die nt N o tic e s

Learn more about changes to ingredients on products containing common food allergens.

08 RESE A RC H U P D AT E

Summaries of studies on bullying, flying with peanut allergy, and immunotherapy.


Food Allergy Food Allergy Research & Education, Publisher Nancy Gregory, Managing Editor Hugh A. Sampson, M.D., Medical Editor Sally Noone, R.N., M.S., Medical Editor John L. Lehr, CEO Irvin André Alexander, Chief Financial Officer George Dahlman, Vice President of Advocacy Veronica LaFemina, Vice President of Communications Mary Jane Marchisotto, Senior V.P. of Research & Operations Julianne M. Puzzo, Senior V.P. of Development and Chief Development Officer Mike Spigler, Vice President of Education

Medical Advisory Board Hugh A. Sampson, MD, Chairman, New York, NY S. Allan Bock, MD, Denver, CO Glenn T. Furuta, MD, Denver, CO Stacie M. Jones, MD, Little Rock, AR Todd A. Mahr, MD, La Crosse, WI Wayne G. Shreffler, MD, PhD, Boston, MA Scott H. Sicherer, MD, New York, NY F. Estelle Simons, MD, Winnipeg, Canada Steve Taylor, PhD, Lincoln, NE Robert A. Wood, MD, Baltimore, MD Robert S. Zeiger, MD, PhD, San Diego, CA

research Advisory Board A. Wesley Burks, MD, Chairman, Chapel Hill, NC Daniel C. Adelman, MD, San Carlos, CA James R. Baker, Jr., MD, Ann Arbor, MI Kari C. Nadeau, MD, PhD, Stanford, CA Robert P. Schleimer, PhD, Chicago, IL Lynda Schneider, MD, Boston, MA ©2013. The material in Food Allergy News is not intended to take the place of your doctor. Food Allergy News or Food Allergy Research & Education will not be held responsible for any action taken by readers as a result of their interpretation of an article from this newsletter. If you have any questions or concerns, ask your physician. Never change your child’s diet without the advice or help of a physician and registered dietitian. Food Allergy News is electronically published quarterly by FARE. Our office is open Monday-Thursday, 9 a.m. to 5 p.m. and Friday, 9 a.m. to 4:30 p.m. ET. If you have any questions, please call 703-691-3179. To join FARE, please call our office or visit www.foodallergy.org. All rights reserved. Th is material may not be duplicated without the expressed written permission of the publisher.

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Message from the CEO

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tand with us. Being a member of FARE means standing with the 15 million Americans who have food allergies, including all those at risk for life-threatening anaphylaxis. It means standing with the 5.9 million children who have food allergies, nearly 40 percent of whom have already experienced a severe or life-threatening reaction such as anaphylaxis. It means standing up so that we can educate others to keep individuals with food allergies safe and included, so that we can raise awareness, so that we can advocate on your behalf—and so that we may one day soon find effective therapies to treat food allergies. For those of you who have renewed your membership to FARE—I thank you. Your support is greatly appreciated. Your membership is critical to our success, and each of you plays a part in advancing our shared mission. Your support and membership have helped us make significant advances in the past year. Since I came on board as CEO of FARE, and in the months following the finalization of our merger, we have grown our FARE Walk for Food Allergy program from 42 events to more than 65 events across the country. We have opened five regional offices, in addition to our national offices in Virginia and New York, to expand our outreach. We have redesigned our website, www.foodallergy.org, specifically with you in mind so that you can find the resources you need more quickly and easily. We have convened the nation’s leading food allergy researchers for a research retreat (read more on page 11), and we have championed an incredible surge of advocacy at the state level centered around increasing access to epinephrine auto-injectors in schools (read more on page 7). I celebrate these accomplishments with you and know that we will accomplish so much more in the months and years ahead. If you have not already, I encourage you to join us as a member. Membership is more than the benefits—it’s about being part of a growing movement. Standing together, we can continue to make a difference for all those affected by food allergies and anaphylaxis.

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7925 Jones Branch Drive, suite 1100 | McLean, Va 22102 800-929-4040 | www.foodallergy.org

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John L. Lehr CEO Food Allergy Research & Education


Food Allergy

FDA Focuses on Food Allergens

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hroughout this spring, the U.S. Food and Drug Administration (FDA) has been accepting public comments on two issues of great importance to the food allergy community: preventive controls and threshold levels for major food allergens. To examine these issues closely, FARE formed a working group comprising food allergy parents, allergists, researchers and regulatory experts. Preventive controls would improve food safety by reducing the risks from all hazards in manufactured foods, including the unintended presence of food allergens. The FDA’s proposed rule to require “Current Good Manufacturing Practice and Hazard Analysis and Risk-Based Preventive Controls” is one of several required by the FDA Food Safety Modernization Act (FSMA), the most important revision of food safety law in decades. Although Congress required that the eight most prevalent food allergens (milk, egg, peanuts, tree nuts, fish, shellfish, soy and wheat) be declared on food labels in 2004, Congress did not require food allergens to be evaluated as a food safety hazard and controlled as a hazard by food manufacturers until the FSMA was signed into law in 2011. The FDA’s proposed rule includes—for the first time—specific requirements for preventing the unintended presence of allergens. Some food companies already have

such preventive controls in place, but many do not. These improved preventive controls, with a stronger emphasis on preventing crosscontact, could reduce the number of recalls for undeclared food allergens and potentially have an impact on food labeling practices. Public comment on the proposed rule on preventive controls is due no later than September 16. FARE is submitting its own comment, which will be shared on our website once filed. Under the proposed rule, companies would be required to begin complying with the new regulations effective one year after the final rule is published in the Federal Register, and smaller companies would have additional time to implement the new procedures. The second issue the FDA is seeking to understand is whether it is possible to safely establish threshold levels for major food allergens. The FDA is currently in the information-gathering stage and has asked for comment from a number of different sources, including organizations like FARE and the general public. The issue of thresholds (the lowest amount of an allergen that elicits an allergic reaction) could have important implications for our constituents. To help inform FARE’s comment on this issue, FARE developed a survey earlier this year seeking input from

the food allergy community. We received more than 5,400 survey responses. The majority of respondents (about 85 percent) were parents/guardians of children with food allergies, and most (about 70 percent) reported that someone in their household had experienced a severe food allergy reaction such as anaphylaxis. When asked how much they knew about allergen thresholds, 28.3 percent responded they were not knowledgeable on the subject, 45.7 percent responded they were somewhat knowledgeable, 22.7 percent responded they were very knowledgeable, and 3.3 percent indicated they had expert knowledge. An overwhelming 93 percent of respondents indicated they would not purchase a food product containing the allergen if they could be assured that the amount of allergen present in the product was “capable of triggering a mild allergic reaction, such as c o n t i n u e s o n pa g e 1 0 >

FARE’s survey on thresholds provided respondents with the opportunity to share how they feel about allergen thresholds, and thousands of you submitted opinions. Here’s a sampling of comments. “I strongly feel that using a threshold for labeling purposes provides a false sense of security that the food is allergen free. Knowing that the exposure of even a microgram of the allergen could be life-threatening, I would advocate for the right to be fully informed on the products that I choose as a consumer and a parent.” “They are unacceptable. No thresholds should be allowed.” “If there are safe thresholds and my doctor confirmed that foods with these labels are safe, I would love to open up more food options for my kids. It would be an improvement in quality of life. We are safe at all costs but also desire the least restrictive scenario.” “Thresholds vary from person to person. What constitutes an acceptable threshold may cause no or a mild reaction in one person but a severe reaction in another. ‘Thresholds’ seem ambiguous and I would not be comfortable by any amount of contamination for a known allergen.” F OO D A LLERGY NE W S • PA GE 3


Food Allergy

Upcoming Events May 10

Spring Luncheon – Chicago, IL May 11

Walk for Food Allergy – Santa Barbara, CA May 12-18

Food Allergy Awareness Week May 18

Food Allergy Conference – Arlington, VA May 18

Walk for Food Allergy – Boise, ID June 1

Food Allergy Conference – Anaheim, CA June 1

Walk for Food Allergy – San Antonio, TX June 2

Walk for Food Allergy – New Orleans, LA June 9

Walk for Food Allergy – Milwaukee, WI June 25

FARE Golf Outing – Hamburg, NJ June 29

Walk for Food Allergy – San Diego, CA July 21

Walk for Food Allergy – St. Louis, MO For more information, or to register for any of these events, visit www.foodallergy.org and www.foodallergywalk.org. •

FARE’s Food Allergy Conferences Feature New Sessions, Expert Panelists

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his spring, the 20th Annual Food Allergy Conferences will bring together leading food allergy experts for a day of learning and enrichment in order to navigate the path of food allergies with a better road map.

Two tracks are offered at all three of FARE’s conferences in Oak Brook, IL (which took place on May 4), Arlington, VA (May 18) and Anaheim, CA (June 1). Our general track will include presentations and discussions with experts in the fields of advocacy, school inclusion, research, and emotional support. This track is designed for people living with food allergies, parents, family members, and professionals in the medical and education fields. We are also excited to offer a teen track this year. This unique program for pre-teens, teens and young adults—both those with food allergies and their siblings—will run parallel to our general track. Moderated by Teen Advisory Group Members and FARE staff, this program provides an agenda to connect with peers dealing with food allergies, discuss new and important issues faced during adolescence and young adulthood, and learn helpful strategies as they gain more independence and personal responsibility for their food allergies. Topics of discussion will include how to travel safely, becoming confident in talking to others about their food allergies, addressing food allergies in new types of social settings, navigating the high school and college experience with food allergies, and more! Teens will have the opportunity to share and learn from one another’s experiences, and also take part in an interactive video and blogging program to create new and engaging content for the FARE website. We hope you’ll join us! For more information on sessions, speakers or to register, visit www.foodallergy.org/conferences.

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Food Allergy

Help us Say FAREwell to Food Allergies!

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rom coast to coast, with more than 65 events planned, this year’s FARE Walk for Food Allergy, presented by Mylan, aims to raise awareness about food allergies as a serious public health concern and raise vital funds for food allergy education, advocacy, awareness and research programs. The FARE Walk for Food Allergy provides individuals affected by food allergies in communities nationwide the opportunity to connect with others by walking, fundraising, leading a walk team, volunteering and supporting this special event. This year, FARE opened five regional offices, all of which play a crucial role in the Walk for Food Allergy, which has grown from 42 to more than 65 events. We are looking forward to seeing our supporters who form a team year after year, as well as meeting new walkers—20 sites are hosting walk events for the first time! Lace up your shoes, and register for a FARE Walk for Food Allergy in your community today by visiting www.foodallergywalk.org. For a list of upcoming walks, please see page 4. Look for a Walk for Food Allergy spotlight in the summer issue of Food Allergy News.

16th Annual Food Allergy Awareness Week

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ince its inception in 1998, Food Allergy Awareness Week (FAAW) has been an important time of year to educate others about food allergies. During the week of May 12–18, food allergies can draw greater attention via the efforts of individuals like you! To help raise awareness during FAAW, consider putting up posters, giving a presentation at your school or workplace, or talking to your local bookstore and library managers about displaying educational materials about food allergies. You can find a presentation template and other free resources on our website at www.foodallergy.org/food-allergyawareness-week.

You can also participate online by visiting the FARE Facebook and Twitter pages throughout the week. We will be launching special online awareness initiatives, keeping you up to date on events and activities happening around the country, and providing you with resources and information to share with your friends and family. Through outreach, conversations and events, we can all help create an environment that promotes the safety and inclusion of all those affected by food allergies. Please join us in our effort to spread awareness. Let us know what you are doing for FAAW by posting pictures on our Facebook page

(www.facebook.com/foodallergyFARE), using the hashtag #foodallergywk on Twitter (@FoodAllergy), or emailing Anna Luke, online community manager, at aluke@foodallergy.org.

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Food Allergy

Ingredient Notices The Kellogg Co. The Kellogg Company would like you to know that starting in May 2013, Pop-Tarts will launch two new flavors of toaster pastries under the Pop-Tarts Gone Nutty!™ label. The flavors, Pop-Tarts Gone Nutty!™ Peanut Butter toaster pastries and Pop-Tarts Gone Nutty!™ Frosted Chocolate Peanut Butter toaster pastries will contain Wheat, Peanut, Milk, Soy and Almond ingredients. The addition of the new flavors will not impact the allergen composition of the current toaster pastry varieties. Kellogg Company has a commitment to allergen management and is confident that these new Pop-Tarts® toaster pastries varieties cannot cross-contaminate with any of our current flavor varieties due to production in

separate facilities. The new flavors will also have very different carton graphics and inner packaging foil to alert consumers to the nut allergens in the food. The cartons for the peanut flavors are orange in color with the phrase “Gone Nutty” under the Pop-tart name. In addition, the foil wrapper is gold in color with the allergen statement printed on front and side panel. The new Kellogg’s® Pop-Tarts Gone Nutty!™ allergen advisory statement will include Contains Wheat, Peanut, Milk, Soy and Almond ingredients. The allergen statement will appear on the cartons and packages of our new Pop-Tarts Gone Nutty!™ Frosted Chocolate Peanut butter and Peanut Butter flavored toaster pastries. No advisory statement will appear on current Pop-Tarts toaster pastries® varieties.

Because product formulations may change from time to time, consumers are strongly encouraged to read the package label prior to every purchase. For more information, contact us at 800-962-1413 or visit our website at www.kelloggs.com.

McKee Foods Corp. McKee Foods Corporation is adding soy flour to the recipes of many Little Debbie®, Sunbelt® Bakery and Fieldstone® brand products. Additionally, the allergen advisory statement for some products will be changing. If you have food allergies or purchase food for someone with food allergies, please always read the labeling on the product package for the most accurate information. If you have questions please phone our Consumer Affairs staff at 800522-4499 for further information.

Timely Tips As the school year wraps up for many of you, here are a few presummer reminders: • Review your child’s food allergy management plan with school staff in advance of any end-of-year field trips or celebrations. • Reinforce the family food allergy safety rules (such as not sharing foods and not accepting foods that have not been approved by a parent or guardian) with your child before parties or social gatherings away from home. • Make arrangements to pick up unused epinephrine auto-injectors from the school nurse on the last day of school. • Ensure that any summer camps your child is enrolled in have a policy in place to care for campers with food allergies (visit www.foodallergy.org/managing-food-allergies/at-camp for more information). You can find a wealth of resources for managing food allergies at school, camp and while traveling in the “Tools and Resources” section of our website.

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Food Allergy FARE leaders recently met with Senate Appropriations Committee Chair Barbara Mikulski (D-Md). FARE Board members Rob Nichols and Chuck Paterakis, and FARE CEO John Lehr (pictured here with Sen. Mikulski) had the opportunity to discuss funding for food allergy research, legislation to encourage schools to stock epinephrine, and FARE’s request for a grant program to support school efforts to implement food allergy guidelines. From left to right: Nichols, Lehr, Mikulski and Paterakis.

Advocacy Update

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s the nation’s largest organization to replace a student’s own prescribed representing the food allergy epinephrine. They are for use in an allergic community, FARE is committed emergency, potentially by a student who to advancing legislative and may not know she is allergic, may not regulatory initiatives that have her own medication close help improve safety and at hand, or when additional inclusion for individuals doses are needed while Currently, there with food allergies. waiting for emergency From schools to the responders to arrive. are some 23 states halls of Congress, FARE strongly that are drafting, FARE is focused on recommends that have introduced, or protecting people children with a with food allergies, suspected food recently passed stock including all those at allergy be seen by an epinephrine laws. risk for life-threatening allergist, be prescribed anaphylaxis. medication, and that the medication be in close Food allergies now affect one in proximity at all times. every 13 children in the United States, and the growing prevalence among kids is one States have taken a variety of approaches reason why current advocacy efforts related toward facilitating the availability of to food allergy safety have emphasized the undesignated epinephrine auto-injectors. school environment. Maryland, Nebraska and Virginia require all schools to stock it. Other states have As of this writing, 20 states allow schools laws permitting stock epinephrine, to stock undesignated epinephrine autowhereas some have guidelines that address injectors. These devices are not intended medication management (including

epinephrine) within schools. Some existing laws and guidelines may need to be revised. Currently, there are some 23 states that are drafting, have introduced, or recently passed stock epinephrine laws. FARE has been instrumental in many of these legislative efforts. We have written letters of support, organized our members in particular states to advocate, provided data to legislators and assisted with implementation once laws are passed. We want the trend of providing stock epinephrine in public places to spread beyond schools, and envision working on its availability for the foreseeable future. We frequently get queries about stock epinephrine from camps, colleges and universities, and institutions serving adults as well, and are looking at these as future areas of work. Please feel free to contact us by emailing advocacy@foodallergy.org with any questions or to learn more about how you can help.

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Food Allergy

Study Analyzes In-Flight Reactions

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new study is the first to report that in-flight reactions to peanuts and tree nuts occur on airlines worldwide – and that taking precautions before and during a flight may reduce the likelihood of reactions. The study, led by Dr. Matthew Greenhawt of the University of Michigan, was based on an Internet survey posted by the International Food Allergy & Anaphylaxis Alliance (www.foodallergyalliance.org). The Alliance, which comprises 11 food allergy organizations in North America, Europe, Asia, Australia, New Zealand, and the Middle East, is chaired by FARE CEO John Lehr. The results appeared in the Journal of Allergy & Clinical Immunology in Practice in March.

Study Examines Impact of Bullying

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ullying has long been an issue of great concern for children with food allergies, their families and their physicians. In 2010, a FARE-funded study showed that more than 35 percent of children over the age of five have been bullied, teased or harassed because of their food allergy. Eighty-six percent of the individuals in this group reported multiple episodes, and more than 40 percent said that they were threatened physically, by being touched with their allergen or having it thrown or waved at them. The results of a study published online by the journal Pediatrics in December 2012 suggest that the problem may be even greater than previously thought. The study, conducted by Dr. Eyal Shemesh (Icahn School of Medicine at Mount Sinai, New York, NY) and colleagues, surveyed 251 families of children with food allergies, ages 8-17. Of those families who completed the survey, 45 percent of the children and 36 percent of their parents reported their

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child had been bullied, and 31.5 percent of children and 24.7 percent of parents reported the bullying specifically due to food allergies, mostly by classmates. In almost half of the cases of bullying that were reported, the children did not tell their parents. Not surprisingly, the study found that bullying worsened a child’s quality of life, especially when parents were not aware of the problem. This research underscores the importance of effective education and awareness programs and the need to work with policymakers to address this issue, especially in the school setting, where a large number of bullying incidents take place. It is also vital that we encourage children and teens who are bullied to communicate with their parents. For information and resources to help cope with bullying and other issues faced by children and teens, visit www.foodallergy.org.

The survey drew 3,273 respondents, who reported 349 reactions. Only 13.3 percent of the passengers were treated with epinephrine, and flight crews were notified of just over half of all reactions. Sixtynine percent of all respondents asked for pre-flight accommodations. Interestingly, 71.6 percent of people who did not have a reaction made a request, as opposed to 55 percent of those who had a reaction. Precautions associated with a lower risk of a reaction were: requesting any accommodation; requesting a peanut/ tree nut free meal; wiping your tray table with a commercial wipe; avoiding airline pillows and blankets; requesting a peanut/ tree nut free buffer zone; requesting that other passengers not eat products containing peanuts or tree nuts; and not eating food provided by the airline. The authors concluded that more research is needed to evaluate the effectiveness of these behaviors.


Food Allergy

Evaluating Immunotherapies

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umerous clinical trials focus on two similar treatments, oral immunotherapy (OIT) and sublingual immunotherapy (SLIT). Both therapies require people with food allergies to take small but steadily increasing doses of an allergen until they reach a daily treatment dose. For OIT, the allergen, typically in the form of a commercially manufactured powder, is mixed into a harmless food and swallowed. In SLIT, the allergen is dissolved into a solution that is placed under the tongue.

Hill), recruited 40 people with peanut allergy, ages 12 to 37 years, at five U.S. sites. The participants were given oral food challenges to test how much peanut powder they could consume without having a reaction. Next, they were divided into two groups. Half received daily peanut SLIT; the other half received a placebo. After 44 weeks of treatment, 14 of the 20 participants (70 percent) who received peanut SLIT were able to consume at least 10 times more peanut powder than when the study began. Of the 20 who received a placebo, only three (15 percent) could safely consume the same amount. After 68 weeks, the amount the SLIT group could consume increased significantly.

Although OIT and SLIT are promising, many questions still must be answered. For example, will the treatments result in desensitization or tolerance? Desensitization would allow a person to consume a significant amount of a problem food without experiencing a “These results are reaction, so long as they encouraging,” said Dr. continue to take the Burks, who serves Desensitization daily treatment dose. as chair of FARE’s Tolerance would Research Advisory would allow a person produce long-lasting Board. “The to consume a significant immunological immune response amount of a problem food changes that enable was stronger a person to eat than we thought without experiencing a allergenic foods, it might be, and reaction. even after treatment is the side effects of discontinued. Another this treatment were important question is relatively small. However, what is the correct dosage and the magnitude of the how long must the treatment be therapeutic effect was somewhat given to ensure that patients are protected less than we anticipated. That’s an issue we against severe reactions? plan to address in future studies.” In January 2013, the Journal of Allergy and Clinical Immunology (JACI) published the results of a multicenter clinical trial of peanut SLIT, funded by the National Institutes of Health. The Consortium on Food Allergy Research team, led by Drs. David M. Fleischer (National Jewish Health, Denver) and A. Wesley Burks (University of North Carolina, Chapel

In February 2013, at the annual meeting of the American Academy of Allergy, Asthma and Immunology (AAAAI), a research team led by Dr. Corinne Keet (Johns Hopkins University, Baltimore) presented an abstract of a study that evaluated milk OIT in 16 children who had successfully participated in previous clinical trials. Four to five years later, fewer than half of

After 44 weeks of treatment, 70% of participants who received peanut SLIT were able to consume at least 10 times more peanut powder than when the study began.

Four to five years later, less than 50% of children are able to consume milk regularly without any symptoms.

these children are able to consume milk regularly without any symptoms. At a press briefing, the researchers noted that some of the children may have stopped consuming small amounts of milk every day, which led to a loss of protection. The bottom line: While OIT and SLIT are promising, more studies are needed in large numbers of patients before these therapies can become widely available through allergists’ office. These therapies should only be administered in an academic, clinical trial setting. To this end, FARE is funding a number of studies of these and other potential treatments.

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Food Allergy

Going to College with Food Allergies, cont. < c o ntinued from pa ge 1

whether a university must accommodate a student with an eating-related disability, but how far must a university go in accommodating the student.”

Lesley University went in the settlement, or if a federal court believes such extensive accommodations are unreasonable, Moore said.

Implications for Restaurants Moore said the long-term implications of the settlement will likely come Included in the DOJ’s technical in the form of extensive assistance document were accommodations the DOJ questions about how the “The apparently believes ADA relates to places of settlement and are necessary. The public accommodation the Q&A put universities settlement provides that serve food, such as for accommodations restaurants. According on notice that students including accepting to the DOJ, the ADA with food allergies must be pre-orders of meals, does not require that provided with meaningful requiring meal restaurants serve delivery and ensuring allergen-free or glutenand safe access to independent meal free foods. However, this dining services.” provider participants document does address have policies in place to other accommodations. accommodate students with food allergies. The unresolved question “A restaurant may have to take some is whether universities must go as far as reasonable steps to accommodate individuals

FARE’s Food Allergy Thresholds Survey

with disabilities where it does not result in a fundamental alteration of that restaurant’s operations. By way of example only, this may include: 1) answering questions from diners about menu item ingredients, where the ingredients are known, or 2) omitting or substituting certain ingredients upon request if the restaurant normally does this for other customers.” A fundamental alteration is defined as a modification that is so significant that it alters the essential nature of the good or services that a business offers, according to DOJ. For example, a restaurant is not required to alter its menu or provide different foods to meet particular dietary needs. For more information, contact the ADA Information Line at 800-514-0301 to speak to an ADA specialist, or visit www.ada.gov.

FDA Focuses on Food Allergens, cont. < c o n t i n u e d fro m pa g e 3

70% of respondents reported that someone in their household had experienced a severe food allergy reaction

28% of respondents indicated they were not knowledgeable about allergen thresholds

93% would not purchase a food product containing the allergen if the amount present could trigger a mild reaction

64.8% would not purchase a food product containing the allergen even if the amount present would not trigger a reaction

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tingly lips or an itchy throat.” Two percent responded they would buy the product, and about 5 percent indicated they did not know. When asked whether they would buy a food containing the allergen if they could be assured the amount of allergen present in the food was not capable of triggering an allergic reaction, the majority of respondents still said no, but not to the same extent (64.8 percent said no; 17.1 percent said yes and 18.1 percent said they did not know). It appears that any changes affecting consumers with regard to thresholds would be unlikely to occur for many years. However, it is crucial for the FDA to hear from the food allergy community now. As with the issue of preventive controls, FARE is submitting comment to the FDA prior to the May 13 deadline. It is clear that we need to understand this issue much better before any changes are contemplated.


Food Allergy

FARE’s New Website Honored by Hermes Creative Awards

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e are pleased to announce that FARE’s new website, which launched in March, has won a Gold Award in the Website Overall/Nonprofit category of the Hermes Creative Awards.

The Hermes Creative Awards is an international competition for creative professionals involved in the concept, writing and design of traditional and emerging media. The awards are administered and judged by the Association of Marketing and Communications Professionals (AMCP). Overall, there were about 5,600 entries from throughout the U.S., and several other countries, in the 2013 competition. The Gold Award is presented to those entries judged to exceed the high standards of the industry norm, and is a tremendous achievement. We are proud to have won the Gold Award for our new website, which was designed to be user-friendly and ensure that FARE’s best resources are tailored to a variety of audiences. More information about the Hermes Awards can be found by visiting www.hermesawards.com.

Research Conferences Open Door to New Discoveries

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ARE’s Research Retreat, held in Washington, D.C. from April 1213, brought together prominent investigators, senior government scientists and officials, industry representatives and food allergy advocates with the goal of identifying promising directions for future research. The retreat was centered around five key areas of inquiry: diagnosis, disease mechanisms, immunotherapy, other therapeutic approaches, and community resources and infrastructure. The recommendations that came out of the retreat will help guide FARE and the research community over the next several years. FARE will also be participating in another key research conference this summer. John Lehr, FARE’s CEO, and Mary Jane Marchisotto, senior vice president of research and operations, will lead sessions during “Allergy: A Global Health Challenge,” an international conference that will be held in Milan, Italy from June 22-26. This joint Congress is organized by the European Academy of Allergy and Clinical Immunology (EAACI) and the World Allergy Organization (WAO), the leading international professional associations in the field.

Pictured above, Haleigh Loso and her teachers, who wore silly wigs for the day as part of Haleigh's school fundraiser supporting FARE.

FARE Kids Who Care

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e love to hear from our youngest supporters. Over the years, we’ve received countless letters from kids who have given up birthday gifts in lieu of donations to FARE, organized bake sales, dedicated their mitzvah projects to food allergy awareness, rallied fellow students to support the cause with pajama days at school … the list goes on and on. We’ve just launched a new series on our blog, blog.foodallergy.org, where we will spotlight these incredible FARE Kids Who Care! To share your story, please email Anna Luke, FARE’s online community manager, at aluke@foodallergy.org.

We will report on the congress in our next issue. In the meantime, you may be interested to learn about two awareness campaigns launched by these associations over the past year. EAACI’s Stop Anaphylaxis campaign (www.stopanaphylaxis.com), which seeks to raise awareness of the sharp increase in potentially fatal reactions in European children, was launched in June 2012. WAO’s World Allergy Week (April 8-14, 2013; www.worldallergyweek.org) focused on food allergies and put an international spotlight on issues such as food labeling, the standardization of anaphylaxis action plans, and access to epinephrine auto-injectors. For the latest research news, please visit www.foodallergy.org.

F OO D A LLERGY NE W S • PA GE 11


Food Allergy

Join Us! thank you for your membership! if you have not yet joined FaRe, we’d like to tell you about our great new member benefits, including: • a personalized online toolbar that will provide instant news and updates from FaRe, including recall alerts and ingredient notices, as well as exclusive coupons at thousands of popular stores, with a portion of proceeds supporting FaRe • priority access to a live spot for FaRe’s upcoming educational webinars • members-only registration rates for FaRe’s conferences • FaRe member wristband and membership card • $10 off a 2-year subscription or $5 off a 1-year subscription to Allergic Living magazine • special members-only 10% discount on all FaRe book and video purchases FaRe membership is available at the individual, family and research advocate levels. For more information, please visit www.foodallergy.org/member-benefits. stand with us! •

Save the Date! the eighth annual teen summit will be held nov. 15–17 in Washington, D.c. stay tuned to our website for more details.

Teen Advisory Group Poised to Make an Impact

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ARE’s 2013 Teen Advisory Group (TAG) has been selected and is in action, with lots of excitement and great ideas in store for educating and advocating on behalf of pre-teens, teens and young adults managing their food allergies. This year was one of our most active for TAG applications, with more than 120 applications received. This year’s TAG members will be involved in developing FARE’s youth programming, and will work with FARE staff to plan our 2013 Teen Summit, taking place this fall. Congratulations to the 2013 TAG members: Gaby B., Lucy B., Nicholas B., Angela C., Kate C., Tim C., Allison D., Melissa E., Elizabeth E., Isabelle F., Max F., Jeremy F., Sarah G., Emery G., Patricia G., Jacob G., Scott G., Matthew G., Dana G., Julia G., Emily H., Kelly H., Kendall H., Madeline K., Leah M., Jennifer M., Claudia M., Halle N., Claudia P., Reed P., Amanda P., Isabel P., Jennifer P., Madeleine-Camille P., Isabelle P., Jake R., Katherine S., Tori S., Nora S., Hannah S., Achint S., Elisa S., Sydney S., Carlo S., Charlie T. and Emily Z. Due to an overwhelming response from teens and young adults across the country to make a difference in their communities and in the lives of others with food allergies, we have also added a TAG auxiliary program called TAG TEAM (Teach, Enrich, Advocate, Mentor). This program works to pair teens in regions throughout the country with Teen Ambassadors from our Teen Advisory Group. Our TAG TEAM members will work together on community projects that will increase the impact FARE makes among teens in their area, and find ways to advocate for and enrich the lives of teens through this unique mentorship program. Individuals 11-18 years old are welcome to take part in this program, and may contact Lynn Heun, Education Manager, at lheun@ foodallergy.org for more details on how to get involved.


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