www.foodallergy.org #ContainsCourage
APRIL 2019 NEWSLETTER
A publication of FARE, Food Allergy Research & Education
“If there was a cure, that would be AMAZING!” –Austin Tran, age 16
In This Issue: Leadership Letter
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CONTAINS: COURAGE™ Campaign Corner
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Driving Toward the Goal
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A New Way to Help Share Food Allergy News
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FARE Welcomes Thomas Casale, MD, Chief Medical Advisor for Operations
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FARE Assists ICER Evaluation of Peanut Allergy Therapies
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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
Spring has arrived, a season that symbolizes hope and brings the promise of new growth. We are optimistic as we see a surge of new participants in the food allergy space and find ourselves engaging in exciting conversations with innovators and advocates. In this month’s feature article, you’ll meet 16-year-old Austin Tran, who shares his goals for the future—personal hopes and measures of progress that strongly align with FARE’s mission to improve the quality of life for individuals living with food allergies. As FARE’s research team grows, we welcome our new chief medical advisor for operations, Thomas Casale, MD. A past president of the American Academy of Allergy, Asthma & Immunology (AAAAI), Dr. Casale has participated in more than 250 clinical trials and helped drive the discovery of new therapies for obstructive airway diseases like asthma. We are fortunate that he will help spearhead the implementation of our five-year research strategy. Hope and growth were also echoed in many of the innovations reported at the AAAAI annual meeting, held Feb. 22-25 in San Francisco. The focus of this year’s meeting was food allergy treatment and prevention. The FARE team was pleased to meet with the dedicated researchers and clinicians working on behalf of our community and discuss ways that we could work more closely together to drive progress. Growing recognition of the food allergy epidemic and advances in biomedical research have brought us to an inflection point, a time with great potential for change. One change on the horizon is the anticipated availability of approved therapies for peanut allergy. FARE has been asked to provide input to the Institute for Clinical and Economic Review (ICER) so they can better understand patient perspectives on the value of these eagerly awaited new treatments. We’re also bringing food allergy news to a wide range of allies and collaborators by providing content that they can deliver to new audiences, allowing us to extend our reach and impact. And we’re always eager to share the stories of our remarkable young people through the Contains: Courage™ campaign as we work to transform food allergy care, research, education and awareness. Thank you for your support, which makes these initiatives possible. Warmest regards,
Lisa Gable
Contains: Courage™ Nights have brought food allergy awareness to sporting events across the country. Participants had a great time rooting for their favorite teams and spending time making new memories. We thank the Brooklyn Nets, Chicago Bulls, Atlanta Hawks, New York Knicks, Dallas Mavericks, Washington Wizards, Los Angeles Clippers and Phoenix Suns of the National Basketball Association and the San Diego Gulls and Chicago Wolves of the American Hockey League for their generous support. Other events will be added throughout the year, so check for the latest on foodallergy.org/containscourage. We appreciate the families across America who have shared their children’s stories with FARE’s Contains: Courage™ Campaign. To help us showcase the remarkable young people who manage food allergies every day, please send us your kid’s “ingredients” of courage. Visit foodallergy.org/containscourage to learn more.
DRIVING TOWARD
THE GOAL
Austin Tran is a busy 16-year-old. A sophomore at James E. Taylor High School in the Katy Independent School District, near Houston, he competes on the varsity soccer team, which at the time of this writing is battling for its first district playoff berth in many years. He wants to attend the flagship University of Texas in his namesake state capital, and he’s working hard toward that goal. Whether he’s practicing, studying, or hanging out with friends, Austin knows he needs to stay aware when food is involved, because he’s allergic to milk, egg (but not baked egg), peanut and tree nuts. “Having allergies, it makes me have to be careful about when I’m eating and what I’m eating, especially if I’m going out to eat,” Austin explains. “If I know I’m going to a specific restaurant, I’ll look it up and see if they have an allergy menu. That way, I can plan out my meals ahead of time. But if it’s a new restaurant and they don’t have an allergy menu, I usually talk to the waiter to see if there are any specific foods that are safe for me. The worst part is being unsure whenever you try out new foods, and not being able to do everything the other kids can.” FARE has been part of Austin’s life for more than a decade. He was in first grade when he participated in his first FARE Walk with his sister Autumn, now age 14, who’s allergic to milk, egg (but not baked egg), and tree nuts. Austin and Autumn also belong to FARE’s Teen Advisory Group and traveled to Washington, D.C., last year for FARECon featuring Teen Summit. “I thought it was a neat experience,” notes Austin. “Some of the presentations
A NEW WAY TO HELP
SHARE FOOD ALLERGY NEWS
were really interesting, like the college students coming to speak about dating with food allergies.” In learning to manage food allergies, Austin has developed strengths that translate to all aspects of his life. “I believe that it’s helped me be more open to other people,” he observes. “I’ve had to learn how to speak up and advocate for myself. I think that’s a skill I might not have learned if I didn’t have food allergies.” Austin wants food allergies to be understood, but not stigmatized. “I hope in the future more people are aware of food allergies. I hope they become more accommodating, especially with restaurants knowing to clean their grills. I also hope that they don’t view kids with food allergies as any different. Whenever I was labeled as an allergy kid, it made me uncomfortable. It shouldn’t be taken lightly, but I don’t want other people to stress about it to the point where it’s isolating.” As he works toward his goals on the soccer field and in the classroom, Austin knows how transformative it could be if researchers succeed at their goals, too: “If there was a cure, that would be AMAZING!”
Austin and Autumn Tran advocate for the food allergy community as members of FARE’s Teen Advisory Group.
FARE’s new Collaborator Program brings the food allergy message to organizations across the country and even around the globe. Launched in January 2019, the program provides nonprofits, educational institutions, government entities and professional organizations with ready-to-use monthly content for their internal and external communications. There are more than 100 members to date, including family-oriented partners like the San Diego Zoo as well as school nurse and pediatrician organizations, diseasefocused nonprofits, school districts, universities, and programs that improve food security and address health disparities. If you know of an organization that would be a good fit for the program, contact Marie Malloy, mmalloy@foodallergy.org, for details on how to sign up.
FARE+Well Newsletter April 2019
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FARE WELCOMES THOMAS CASALE, MD CHIEF MEDICAL ADVISOR FOR OPERATIONS Dr. Thomas Casale joined FARE in February 2019 as our chief medical advisor for operations, bringing a wealth of expertise to FARE’s groundbreaking research efforts. In a career spanning four decades, Dr. Casale has investigated problems in allergy and immunology at the National Institutes of Health (NIH), the University of Iowa, Creighton University and the University of South Florida in Tampa, where he is a professor of medicine and pediatrics and chief of clinical and translational research in the Division of Allergy and Immunology. A past president of the American Academy of Allergy, Asthma & Immunology, he has also served on the Board of Directors of the World Allergy Organization and chaired the American Board of Allergy and Immunology. He has participated in more than 250 clinical trials funded by NIH, foundations, state health departments and industry and has published more than 400 scientific papers, reviews and chapters on his research. Dr. Casale has studied allergic conditions including hives, hay fever and food allergy and helped pioneer the development of new biologic therapies for airway diseases such as asthma. One possible approach that Dr. Casale wants to explore further in food allergy treatment is using biologics in conjunction with immunotherapies, with the hope that blocking allergic reaction pathways could improve the safety and effectiveness of food immunotherapy, allowing first the biologic, and eventually the immunotherapy, to be discontinued after the immune system has been retrained to tolerate the food. Other areas of interest in which Dr. Casale sees a role for FARE include:
• Promoting implementation of the 2017 NIH peanut
introduction guidelines and supporting the development of additional prevention strategies.
• Developing diagnostic methods and investigative
techniques that don’t require oral food challenges.
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Helping make private-practice food immunotherapy safer and more effective by bringing providers together to seek consensus on standardized protocols and outcome measures.
• Advocating to the U.S. Food and Drug Administration for timely action on drug approvals and flexibility in clinical trial design, especially for patients with multiple food allergies.
FARE+Well Newsletter April 2019
• Leveraging the FARE Patient Registry and the 33 centers
of excellence in the FARE Clinical Network to understand how food allergies develop, follow treatment results, and advance the science and practice of medicine.
“We’re making progress in getting a couple of peanut allergy therapies approved, the first thing we’ve ever had to offer patients other than avoidance,” notes Dr. Casale. “We need to study different foods, define how to optimally use these treatments, and then use them in a way that will hopefully impart long-term safety for individuals with food allergy. It’s an exciting time, because there’s lots of opportunities to expand therapeutic options for patients with food allergy and improve their quality of life.”
FARE ASSISTS ICER EVALUATION OF
PEANUT ALLERGY THERAPIES The Institute for Clinical and Economic Review (ICER) is an independent research organization that evaluates new treatments moving through the regulatory approval process. These evaluations inform conversations between the treatment developers and insurers around coverage and pricing. FARE, along with other food allergy patient advocacy organizations, has been participating in a review of the comparative clinical effectiveness and value of treatments for peanut allergy, including new products from Aimmune Therapeutics and DBV Technologies. FARE submitted initial comments about the scope of the analysis and will weigh in throughout the process to ensure that the voices of patients and the broader food allergy community are taken into account in any final decision-making. As the first therapies await approval by the U.S. Food and Drug Administration and are publicly reviewed and analyzed, FARE continues to support science-based solutions to protect patients and halt the rise of the disease.
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