FARE+Well Newsletter - October 2018

OCTOBER 2018 NEWSLETTER

A publication of FARE, Food Allergy Research & Education

“Once the facts are told, people start to realize how important this is.”

–Sam Platin, age 14, standing with brother Max, age 11

In This Issue: Raising Awareness

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Leadership Letter

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Research Recap

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Epinephrine Advocacy in Action

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RAISING AWARENESS TODAY, FIGHTING FOR A SAFER TOMORROW

In 2004, Sam Platin had his first taste of ice cream. He doesn’t remember it—he was just 8 months old at the time—but he’s been told that his face “blew up.” Food allergies have been a part of Platin family life ever since.

Sam is now 14 and a high-school freshman. He shares a love of basketball and a lifetime of food allergy with his brother Max, who’s 11 and in the sixth grade. These days, their food allergy journeys are on different paths. Sam has outgrown most of his allergies, while Max is managing allergies to five of the top eight allergens, plus sesame.

A publication of FARE, Food Allergy Research & Education

Continued on page 3

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foodallergy.org

LEADERSHIP LETTER

Dear Friends of FARE,

RESEARCH RECAP Lisa Gable Chief Executive Officer

As I write this, I am three months into my role as CEO of FARE, an organization that has served as a lifeline for countless families across the country. Over the past 90 days, I have had the pleasure of meeting many parents of children with life-threatening food allergies as well as adults managing food allergies, each of whom has shared deeply moving stories with me about their journey with this life-threatening disease.

I have learned so much about food allergies in this short period of time and am humbled by the courage of the families we serve every day. As I reflect on the experiences that have been shared with me, I am struck by how far we’ve come, and how much we still have yet to accomplish.

With therapies for peanut allergy so close to FDA approval, we are at a critical inflection point. We are proud of the leading role we have played in bringing therapies to market, but we must also focus on accelerating research into treatments for food allergens and improved diagnostics.

FARE will continue to lead the way in catalyzing progress in food allergy research in a number of ways, including focusing efforts on the FARE Patient Registry as well as investing in the expansion of the FARE Clinical Network, a national collaborative that has been instrumental in advancing our breadth of knowledge through the coordination of clinical trials for food allergy across the country.

Our world-class educational programs will be amplified through national partnerships. We will also elevate the understanding that every American has an active role in meeting the needs of the food allergy community, and drive awareness and understanding of the immediate consequences of inaction.

In this issue, we are pleased to profile a special set of siblings that have worked so hard to raise awareness about food allergies. You’ll also learn about FARE’s efforts throughout the epinephrine auto-injector shortage, how you can play an active role in research and how to participate in the Teal Pumpkin Project this Halloween.

I hope you enjoy FARE+Well, our new newsletter dedicated to helping you live well with food allergies. I’m honored to be on this journey with you.

Warmest regards,

Lisa Gable

FARE is the world’s largest private source of funding for food allergy research. Here are three ways you can participate in our research initiatives.

Visit—or Revisit—the FARE Patient Registry: Your food allergy history holds clues to finding new therapies. You can share that data with the research community by becoming part of the FARE Patient Registry. Go to foodallergypatientregistry.org to create a free, confidential profile and join our research studies. If you’ve already created a registry profile, log on today to complete current surveys before a new survey opens later this year.

Find a Trial That Fits Your Needs: We live in the most promising and productive decade ever for food allergy research, with more than 100 clinical trials now available.

To simplify your search for a clinical trial, FARE has launched the Clinical Trial Finder. This user-friendly interface makes it easier to explore the food allergy studies listed by the National Institutes of Health on clinicaltrials.gov. Go to trials. foodallergy.org to learn more.

Connect with a Center of Excellence: With the August 2018 addition of Vanderbilt University Medical Center, the FARE Clinical Network now encompasses 31 food allergy centers of excellence located in 17 states and the District of Columbia.

These institutions are expanding access to top-quality patient care, and many are hosting host large multi-center clinical trials to identify new treatments. A list of FARE Clinical Network centers is at foodallergy.org/foodallergycenters.

RAISING AWARENESS, TODAY FIGHTING FOR A SAFER TOMORROW Continued from page 1

Max dreams of following Sam’s footsteps to greater freedom, “just being able to really have food.” When the family goes out for dinner, he explains, “it’s kind of annoying that I have to bring my own food. Even if I might be able to have the food, I can’t take chances with cross-contact.”

For now, both brothers focus on raising food allergy awareness in their schools and throughout their community in northern New Jersey. “There’s a lot of kids with allergies at my school, mostly in every class,” notes Max. “We did the Teal Pumpkin Project during Halloween in third grade and fourth grade, too.” His middle school has FARE posters in the cafeteria that describe what an allergic reaction looks like and advise staff and students about how to help someone who’s having a reaction.

Sam has also been spreading the word. “We showed the teachers videos of how kids are struggling with food allergies.

Before we spoke to our school, not many people had that true knowledge of how food allergies can affect someone’s life. If people don’t know, it’s easy to assume that a food allergy is just a little thing. Once the facts are told, people start to realize how important this is.”

When it came time for Sam to complete a Bar Mitzvah project, he chose to fundraise for FARE and to participate with family and friends in FARE’s Food Allergy Heroes Walk. His hard work raised $13,000 to educate, raise awareness and support the search for effective treatments. He reports that, “for families who have questions about food allergy, who are trying to figure out how to tackle it, FARE provides a good understanding and foundation. FARE is a great support line, and I hope we can find a cure soon.”

FARE+Well Newsletter Oct. 2018

“We did the Teal Pumpkin Project during Halloween in third grade and fourth grade, too.”

– Max Platin

Sam has successfully completed two oral food challenges that involved a “life-changing” cup of chocolate milk and a baked egg muffin. His next challenge, with plain egg, is planned for December. He experiences cross-reactivity between tree nuts and his seasonal allergies, but hasn’t had a severe tree nut reaction in the past. His wish is that “every kid who has a food allergy gets the opportunity to try a food that they’re unable to eat now,” like ice cream and pizza—his favorite—that he is now able to enjoy.

Max has outgrown a peanut allergy but is still allergic to wheat, milk, eggs, tree nuts, sesame and shellfish. Turning a lifethreatening wheat reaction into outreach, he gave a fifth-grade health fair presentation that explained biphasic reactions, dangerous symptoms can come back hours later, even after more than one dose of epinephrine.

Lana Platin, mom to Sam and Max, marvels at the ground their household has covered in their food allergy journey thus far. “From not knowing what a food allergy was until Sam took that first lick of ice cream, we’re now 14 years into being a family with food allergies. We’ve grown and learned so much, and FARE has been a huge support system for us. FARE has been our go-to in terms of literature, advocacy, making the community aware. Every chance we get, we do what we can to give back.”

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EPINEPHRINE ADVOCACY IN ACTION FARE is seeking solutions to the ongoing shortage of some brands of epinephrine auto-injector (EAI). Since early reports of the shortage last spring, FARE has been driving recognition of and responses to this crisis, and the food allergy community has been crucial in empowering these efforts.

Starting in late April, we surveyed FARE’s online community about epinephrine accessibility. Thank you to everyone who responded! Your voices were key to drawing attention to the problem. When reports of difficulty obtaining EAIs spread from five to 14 states during the survey’s first week, FARE sent a May 1 letter to the U.S. Food and Drug Administration (FDA), asking the agency to use all available remedies to address what manufacturers were calling a “spot shortage.” One week later, the shortage had spread to 45 states, so FARE released a statement calling for immediate FDA action.

In August, the manufacturers of EpiPen® stated that the shortage was still ongoing and that some pharmacies might not have stock. FARE responded with national outreach through FARE’s foodallergy.org website and through online, broadcast and social media to advise families having problems filling epinephrine prescriptions:

Pharmaceuticals’ applications for generics of EpiPen and EpiPen Jr, and extending expiration dates on some lots of EpiPen. Many families trying to access alternative EAI brands have found their insurers will not pay for a non-preferred product. With so few options available, FARE believes this is unacceptable. We have written to major national health insurance companies urging that they make all EAIs available to patients at preferred cost-sharing for as long as the shortage persists. FARE continues to pursue all available avenues to ensure easy, affordable access to epinephrine.

How to Take Part in the Teal Pumpkin Project®

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Provide non-food treats for trick-or-treaters

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Add your home to the Teal Pumpkin Project map

• Visit healthmart.com to find independent pharmacies that may have supply.

• Ask your doctor for another brand and get trained on how to use it.

• Don’t toss your expired auto-injector—if it’s all you have in an emergency, use it, then call 911 and seek treatment.

The FARE Clinical Advisory Board Executive Committee also sent FDA a letter recommending that the agency inform schools that expired undesignated (stock) EAIs should not be discarded until they can be replaced with new ones. The FDA has taken steps proposed

by FARE, declaring a national shortage, granting approval to Teva

FARE+Well Newsletter Oct. 2018

Help create a safer, happier Halloween for all by following these simple steps.

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Place a teal pumpkin in front of your home to indicate to passersby that you have non-food treats available

Spread the word! Share the Teal Pumpkin Project with your friends and family. Embrace the teal!

TealPumpkinProject.org

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