Allergy Shmallergy

Simplifying life for families with food allergies.

Food Allergies at School: Moving Beyond Food Bans December 10, 2021

For years, school administrators and parents alike have struggled with the question of how to keep students with food allergies safe while in their care. And in some cases, both schools and parents have supported school-wide bans on allergens in an effort to protect food allergic children. But for many, food bans just don’t work. So what do studies show? And what should schools be doing to safeguard children with food allergies?

School-Wide Food Bans

Food bans often prohibit all students from bringing in a specific allergen. Most often it is peanuts that are banned, followed closely by tree nuts (almonds, cashews, walnuts, pistachios, etc) or more generically “all nuts” (presumably peanuts and tree nuts). Limits like these can work on the classroom level, but are impractical when elevated to a school-wide policy.

  1. Peanuts and tree nuts are only two of the nine most common allergens and there are over 160 documented foods to be allergic to.
  2. Any allergen can cause a serious reaction. Banning nuts only protects those students and staff who have a peanut or tree nut allergy.
  3. School-wide bans cannot be enforced.
  4. Banning food school-wide often leads to the assumption that everything that comes through the school door is safe. We know that teachers and administrators cannot police every snack, special treat and lunch that each and every student and staff member brings. And the last thing you’d want to teach a food allergic child is to eat something (assuming it’s safe) without checking on the ingredients first.

Studies have also shown that food bans don’t protect students. In fact, a five-year study conducted by McMaster Children’s Hospital in Ontario, Canada notes that bans can actually stigmatize them by making them targets of frustration over food. Students with food allergies often cannot eat with their friends and become victims of bullying – a far too common, far too unmentioned experience of kids with food allergies.

When are Food Bans a Good Idea?

Preschool aged children are at a difficult developmental stage for food allergy management. They may not be able to understand the nuances and dangers of their food allergic classmates’ condition. In their effort to be a good friend, they may try to share food; and food allergic kids may be unable to distinguish safe from unsafe food at that age. And, of course, preschoolers have their hands on everything, setting the stage for cross-contact reactions.

Food bans are also a good idea within a classroom. The classroom is meant to be a safe and inclusive place for ALL students. It should be the protective home base for students with food allergies. Eliminating a student’s allergen from the classroom whenever possible is conducive to learning. If a student is worried that they may have a frightening reaction triggered by something in the classroom, they will be unable to focus on almost anything else as their minds and bodies go into fight or flight mode.

Food bans are also a good idea at group events such as the school dance, special group rewards involving food, team snacks, etc. Focusing on inclusiveness is critical – it’s a lesson in empathy and support for all involved.

What DOES Work? Better Management Ideas for Better Outcomes

Couple classroom and event-based food bans with these strategies for a protective and inclusive experience for students with food allergies:

  1. Food Allergy Education: Kids are told to protect their friends with food allergies but are never taught the basics of the condition. Lessons on food allergy fit nicely into units about nutrition and health. Bonus: lessons about food allergy tend to be very interactive. They result in noticeably stronger sense of community and empathy for this and other invisible conditions in classrooms of all ages.
  2. Food Allergy Training: Teachers, administrators and staff should also receive an education on food allergies. Theirs should include symptoms of an allergic reaction and the language a student might use to describe it, how to manage a reaction and what to do in case of emergency. They should also focus on the social/emotional impact of food allergies and related conditions so they can keep an eye on students who may be struggling.
  3. Cafeteria: There are many ways to make the cafeteria a safer place for students with food allergies. First, make the ingredients transparent for diners by either posting the inclusion of the top 9 allergens on each item without an ingredient label or offering a point person to answer questions (or both). Second, offer allergen-friendly tables or seating. Peanut-free tables do not protect students with nut or other allergies. If there is flexibility, offer a broader allergen-friendly table where kids with food allergies can eat and feel understood. Also, reserve the ends of dining tables for kids with food allergies; this way, they can eat with their friends but not feel bound on either side by potential danger.
  4. Enforce Hand Washing: Encourage or require children to wash their hands after eating and before entering their homeroom. Hand sanitizer (which is good at killing bacteria and viruses) does not remove the food protein that causes an allergic reaction. The only way to remove food protein is to wash with soap and water.
  5. Stock Epinephrine: Finally, in addition to allowing students to keep an extra set of epinephrine auto-injectors at school, schools should take advantage of the Stock Epinephrine Act to keep extra, unassigned epinephrine auto-injectors at school for use by anyone who may experience a reaction. Anyone can develop an allergy to anything at any time in their lives, so having this life-saving medication available in an emergency is critical.

 

What the PFDD Meeting for Food Allergy Means for You September 23, 2021

Filed under: Advocacy,Uncategorized — malawer @ 2:49 pm
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Early this month, the Food Allergy Collaborative (of which AllergyStrong/AllergyShmallergy is a founding member) and its generous sponsors hosted the Externally-Led Patient Focused Drug Development (PFDD) meeting for Food Allergy. This impactful event was held for the benefit of the U.S. Food & Drug Administration (FDA) who governs therapies for this condition and sets labeling policy.

The purpose of a PFDD meeting is to present the patient’s experience and perspective to the FDA so that they consider the needs and priorities of our community as they approve new treatment and set regulations. The PFDD for Food Allergy meeting enlightened the FDA about the challenges and hardships faced by patients of all ages and backgrounds, the types of treatments and therapies we would like to see approved, as well as the risks we are willing to face vis-a-vis treatment options.

Watch the Externally-Led PFDD

We encourage you to watch and share the video using this link: https://foodallergycollaborative.org/pfdd/.

We heard from patients from all over the country who voiced their experiences with food allergy. Throughout the meeting, some themes echoed over and over again:

  • The need for more accurate and informative diagnostics that are less invasive;
  • The need for accessible, affordable food that is contains easy to evaluate, accurate labeling;
  • The need for less invasive, easy to carry emergency medication; and
  • The need for long-lasting therapies that treat allergies beyond the peanut.

Another topic that was mentioned again and again was a priority to find and approve treatments for the 26 million adults living with food allergy. As one participant stated, “…current treatment is oriented towards children. Those children DO grow up.” Another panelist described her adult on-set food allergies with chilling effect. “One day, I was eating this food without any issues. The next day… it nearly took my life.”

The Food Allergy Collaborative captured the broadest experience possible to represent the incredible diversity of patients and their individual journeys with food allergy. This included patients of different socioeconomic backgrounds as well as those who live in different communities across the country. We had representation from young and older patients, those with and without multiple food allergies, within and outside the Top 9 most common allergens, with and without related conditions (like eczema, asthma and EoE), those who have undergone treatment and those who have not.

The Food Allergy Collaborative is looking for more voices and additional perspectives using the link below. Comments will be accepted for up to 30 days (October 8, 2021) for inclusion in the Voice of the Patient report.  Patients impacted by food allergy are asked to think about:

  • the burden of food allergies;
  • their diagnosis journey and the challenges associated with diagnosis and oral food challenges;
  • the challenges with avoidance and finding safe food;
  • the challenges and experiences with epinephrine auto-injectors;
  • their experience with treatment and clinical trials (how did it improve – or not – their lives? If they dropped out, why? What would they like to see in a treatment option?);
  • Acceptable/unacceptable risks for food allergy treatment; and
  • Desired goals for food allergy treatment/management.

We want to hear from you! Please submit your comments here: PFDD Patient Comments.

With this portion of the PFDD process behind us, the Food Allergy Collaborative is focused on the Voice of the Patient report. This report – to be published in Spring 2022 – will combine relevant research and survey data with the testimonies from the PFDD meeting and digital submissions.  This will offer the FDA the fullest picture of patient experiences possible, which will assist them as they review products which meet our communities’ needs.  The Food Allergy Collaborative has high hopes that our patients’ testimonies and the information that follows in our Voice of the Patient report will serve as an excellent resource for the FDA and other agencies as they evaluate treatments and consider policy for patients with food allergies.

 

Understanding the FASTER Act: Protecting Those with Sesame Allergy and Beyond April 27, 2021

Filed under: Advocacy — malawer @ 2:01 pm

The food allergy community has cause to celebrate! President Biden signed the Food Allergy Safety, Treatment and Education Research (FASTER) Act of 2021 into law, officially making sesame the 9th major food allergen. The FASTER Act will require manufacturers to label sesame by its common name in their ingredient labels and prioritize research and treatment for all food allergies.

Sesame joins dairy, eggs, peanuts, tree nuts, fin fish, shellfish, soy and wheat among the most common allergens. These “Top 9” allergens account for 90% of all allergic reactions – but allergies to over 170 different foods has been recorded. Although it was not originally included in the 2004 labeling law – the Food Allergy Labeling and Consumer Protection Act – which named the “top 8” allergens, recent studies show that sesame allergies are as common as some tree nuts which were included on that list.

Why is this important?

Sesame allergies are on the rise. While all food allergies have increased globally since the 1990s, sesame allergies are growing exponentially. It is currently estimated that more than 1.5 million Americans live with this life-threatening allergy. Sesame is known for producing serious reactions and is not typically outgrown. Food allergic visits to the emergency room have tripled in the last decade. Severe allergic reactions, called anaphylaxis, can be fatal.

To date, sesame was not required to be labeled by its common name on ingredient lists. Sesame was often listed under a number of different names including foreign terms such as “benne seed,” “gomasio,” or “tahini”. It could also be hidden in “lump sum” ingredients such as “spices” or “natural flavors,” making it difficult for consumers to determine whether a food might contain sesame or not.

By requiring sesame to be labeled by a common or recognizable name, consumers with food allergies will be able to easily tell if a food is safe for him/her to eat. The FASTER Act will protect patients from dangerous allergic reactions.

What is in the FASTER Act?

The FASTER Act requires manufacturers to include sesame seeds in plain language on ingredient lists on all packaged foods. Sesame seeds and any products made from sesame seeds (such as sesame oil, ground sesame flour, etc) will be listed simply as “sesame” or “sesame seeds.” This law will go into effect January 2023.

Importantly, this law also requires the Secretary of Health and Human Services (HHS) to prioritize a thorough review of food allergy prevention, treatment and research within the next 18 months. The FASTER Act also puts a regulatory process in place to review and declare other foods as “major food allergens” in the future. This allows the medical community to look ahead and open the door for additional food to be included on food labels.

In conclusion…?

The FASTER Act helps the US labeling laws better reflect the needs of the population. The inclusion of sesame begins to bring the United States in line with other industrialized nations. Currently, the United Kingdom, the European Union, Canada, Australia and others require clear labels for far more allergens in order to protect its citizens. And while sesame now joins the list of major allergens, many allergens remain unlabeled.

AllergyStrong – and the food allergy community at large – stand ready to help protect patients and ease the burden of this condition. The FASTER Act is a tremendous step in that direction!

 

FDA Issues Guidance Regarding Sesame Labeling November 13, 2020

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On November 10, 2020, the US Food and Drug Administration issued draft guidance to manufacturers regarding the labeling of sesame seeds and in food products. Allergy Shmallergy and AllergyStrong have tirelessly advocated for better labeling for sesame seeds alongside the Allergy & Asthma Network and others for years. We see this is a positive first step in achieving our goal of mandatory labeling.

Currently, sesame is the 9th most common allergen in the US and is not required to be clearly labeled on food ingredient labels. Unlike the requirement to label allergens in the “Top 8” (the eight most common food allergens) by their common, most recognizable name, sesame can be hidden under alternate, foreign names (like “tahini” or “bene seed”) or general terms such as “spices” or “natural flavors.” This means that patients who have a sesame seed allergy never truly know whether a food is safe for them by reading an ingredient label.

In the draft guidance, the FDA encourages (but does not require) food manufacturers to label for sesame. Susan Mayne, Director of the FDA’s Center for Food Safety and Applied Nutrition states, “Many Americans are allergic or sensitive to sesame, and they need the ability to quickly identify products that might contain sesame.” She notes that while most products that contain sesame are labeled properly, some ingredients are made from sesame seeds but are labeled otherwise. Consumers may not be familiar with these alternative names on a product label’s ingredient list.

Sesame seed allergies are on the rise in the United States. A 2019 study conducted by Dr. Ruchi Gupta and her team at Northwestern University shows that sesame allergy affects 0.23% of the U.S. population amounting to over 1.5 million patients nationwide – making it almost as common as soy or pistachio allergies which are required to be labeled as part of Food Allergen Labeling and Consumer Protection Act (FALCPA). And 4 out 5 patients with sesame allergy report having at least one additional allergy to manage.

1 in 3 patients with a sesame allergy have reported serious reactions. Given its rising prevalence combined with potentially dangerous reactions, it is surprising that updated guidance hasn’t been issued sooner. This move by the FDA is a positive first step towards mandatory labeling. Continued education about sesame seed allergy is needed so that lawmakers and food manufacturers can better protect their allergic consumers and bring the US labeling laws into better alignment with the other major Westernized nations. Currently, Canada, the United Kingdom, the European Union, Australia and New Zealand require sesame to be labeled in ingredient lists on all food products.

In the meantime, the Food Allergy Safety, Treatment, Education & Research (FASTER) Act, H.R. 2117, S. 3451 has been introduced in both the House and Senate with the hope of getting it signed into law before the end of the year. Among the items included in the the FASTER Act is the proposal to update the current labeling laws (under FALCPA) to include sesame seeds.

 

Another Pitch for Food Allergy Education October 28, 2020

Following my fascinating time teaching a senior writing seminar at a local high school (see What Does Food Mean to You?), I was struck by two things:

  1. These high school seniors were impressively thoughtful, creative and bravely willing to share their rich and rewarding stories (and souls) with their peers. And,
  2. They wanted to talk about food allergies more than any of that.

It’s FUN to talk about food – who doesn’t love to tell stories about their food adventures, a favorite meal, a holiday celebration, their dream dessert…?! As robust as our conversation was about writing and food, the conversation that followed was absolutely enlightening.

When I mentioned to the class that, in addition to my other writing, I often write about food allergies, hands went up immediately.

“How is a food allergy different than a food intolerance?”
“Can you outgrow a food allergy?”
“Do adults acquire new food allergies?”
“Are there treatments available?”
“What that medication people carry? How does it work?”
“How can I support my friend who has a food allergy?”

We spent 45 minutes – half of their class time – talking about food allergies that day. Forty-five minutes before we needed to cut them off and return to writing.

I spend a lot of time talking to school administrators about the value of food allergy education – especially for young children through early adolescence. This experience not only underscores the importance of food allergy education, but it highlights the continuing need to discuss it.

Two kids in every classroom have at least one food allergy. But as teenagers grow into young adults, they’ll soon find that EVEN MORE adults have food allergies than children. According to a study by Dr. Ruchi Gupta and her colleagues at Northwestern, 1 in 10 adults live with food allergies – 25% of whom acquired a new allergy AS an adult.

Administrators often see the value of a short unit about food allergies to health education, but don’t often add it to their curriculum. Why? Because, they say, these days kids grow up around food allergies. They know all they need to know from being around their peers.

But, based on my time in the classroom, it is clear this theory that students are absorbing food allergy lessons by osmosis doesn’t cover it. Young children don’t understand what a food allergy is and why some people have them. Pre-teens may lack understanding of the frequent obstacles and dangers their peers with food allergies face day-to-day. Teenagers are expected to help keep their friends safe but don’t know what it’s really like to have food allergies and don’t know how to help. And young adults may need to know how to recognize symptoms of food allergies and use an epinephrine auto-injector to save someone’s life.

Students hear the words “food allergy” and only have a vague sense of what it means. Even by age 18, students hadn’t learned what they felt they needed to know about the food allergies that they encounter. They were left with so many questions, I could have filled several sessions answering their questions.

If we expect our children and young adults to be empathetic to their peers who are physically, socially and emotionally affected by food allergies (and other medical conditions), we need to give them a proper introduction and equip them with the age-appropriate skills to become supportive friends and classmates.

At this time, most schools STILL don’t formally teach their students about food allergies despite the fact that there are nut-free classroom, peanut-free tables, and gluten-free options in the cafeteria. A short lesson would go a long way in fostering community, building empathy, empowering helpers and protecting students.


 

Important Update: FDA Temporary Labeling Policy June 22, 2020

 

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AllergyStrong has participated in several discussions with the US Food & Drug Administration in partnership with several passionate food allergy advocacy organizations to ensure protections for food allergy consumers.

 

Our most recent meeting offered an opportunity for the food allergy community to voice its concerns based on our daily challenges with food purchasing.  Additionally, we were able to learn more about the policy itself as well as manufacturers initial reactions.

 

The food allergy community should feel reassured that the FDA understands our concerns and is working with advocates to keep patients safe.  They underscored their commitment to transparency in our meeting and demonstrated their willingness to respond to our concerns.

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Background:  The FDA relaxed it requirements for food labeling on May 22, 2020 in order to preserve the food supply chain during the COVID-19 pandemic.  In short, this temporary policy allows manufacturers to substitute minor ingredients without issuing a label change. [Read FDA Issues Temporary Policy Allowing Some Substitutions in Food for details of this policy.]

 

The FDA is trying to balance food safety with food security during the COVID-19 pandemic.  They believe this guidance provides the flexibility needed by manufacturers with guardrails to ward against adverse health effects.

 

 

 

 

FDA’s Stance on Food Allergies in Relation to this Policy:

  • Although the FDA gives limited flexibility to manufacturers to substitute minor ingredients, it does not compromise on food allergens because they represent a health and safety risk.
  • The Top 8 allergens (peanut, tree nuts, milk, egg, soy, wheat, fish and shellfish) cannot be substituted in for another ingredient without an appropriate label change.
  • Additionally, gluten, sulfites, glutamates and other ingredients known to cause sensitivity in people cannot be substituted in for another ingredient.
  • Finally, manufacturers are warned against substituting in priority allergens (such as sesame, celery, lupin, buckwheat, molluscan shellfish, and mustard) that are common in other parts of the world without a label change.

 

 

Latest Information and Clarification:

  • We urged the FDA to require more transparency from manufacturers when they need to substitute an ingredient.  Advocates and the FDA agreed that a sticker that sits on top of the ingredient label on packaging to indicate the most current ingredients would be best.
  • The FDA is also recommending that substitution information to be listed on manufacturers websites and signage be placed at the point of sale.
  • Following conversations with the food industry, the FDA stated that manufacturers do not want to make changes to their products unless forced to by circumstance.  They expect to see this policy employed rarely and to see omissions rather than substitutions.

 

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In response to our conversation, the FDA issues an FAQ page on this policy with further clarifications.

 

AllergyStrong will continue to track this policy and keep you informed.  We will continue our conversations with the FDA to best support food allergic consumers and ensure food safety and transparency for all.

 

 

 

 

IMPORTANT: FDA Issues Temporary Policy Allowing Some Substitutions in Food May 26, 2020

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The FDA just released a temporary relaxation of its food labeling policy.  This temporary change comes into effect to prevent shortages and manage delays in the food chain supply during the COVID-19 crisis.  This policy will remain in effect through the end of the public health crisis.  Although the policy takes food allergies into consideration, it may have an affect on the safety of food particularly for those who allergies fall outside of the Top 8 (peanut, tree nut, dairy, egg, wheat, soy, fin fish, and shellfish).

 

“The food industry has requested flexibility when manufacturers need to make such minor formulation changes… that may cause the finished food label to be incorrect, but that do not pose a health or safety issue and do not cause significant changes in the finished food due to the temporary formulation modifications.”

 

The policy allows manufacturers to:

  • Make minor formula changes consistent with the product’s taste, texture and integrity; and
  • Continue labeling their original ingredient list without noting changes made.

 

[Read FDA’s statement summary here.]

 

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Image by Kevin Phillips from Pixabay

 

The specifics of the policy offer a few important details:

  1. On page 6, FDA encourages manufacturers to make label changes whenever possible noting that consumers rely on those labels to make informed choices. They are not, however, required to alter their labels during this time.  If labeling cannot be changed on the package, the FDA recommends companies use alternative means of informing consumers for transparency, such as posting information on their website or applying stickers to packaging.
  2. As always, flexibility remains in place for formulations of generically grouped ingredients, such as “spices”, “flavoring” or “color,” and can be changed without relabeling.
  3. The FDA is authorizing this flexibility for minor ingredient changes.  When considering these “minor” ingredients, the FDA highlights:
    • Safety: does the ingredient substitution cause an adverse health effect (such as food allergens)?;
    • Quantity: the substitution must generally be for ingredients that comprise 2% or less of the finished food/final product;
    • Prominence: the substitution should not conflict with a major component of the product (for example, wheat in a muffin);
    • Characterizing Ingredient: the substitution/omission should not represent the ingredient that defines the product (such as raisins in a raisin bagel); and
    • Nutritional/Other Claims: the substitution should not misrepresent nutritional or other claims made about the product.

 

Faced with supply issues of their own, manufacturers can now reduce the amount of ingredient they use or choose to omit it altogether.  Additionally, they may temporarily substitute an ingredient that is less than 2% of its finished product.  The FDA encourages manufacturers to consider allergens (the Top 8 allergens as well as many common allergens beyond) before making a change and suggest labeling should such a change be necessary [page 8].  

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The FDA policy outlines several areas where it will not object to substitutions [page 10].  One area of possible note for those with food allergies is Fats and Oils.  The FDA will not object to a swap of fats and oils as long as they do not pose an obvious allergenic risk (say using peanut oil instead of vegetable oil) and is derived from the same source (plant, animal, etc) and are highly refined.  They specifically mention a hypothetical scenario where a manufacturer might substitute canola oil for sunflower oil.  Speak to your allergist about your personal risk with refined oils and these possible substitutions.

 

As we strive to understand how this policy will impact our community, we recommend that those with food allergies:

  • Read ingredient labels carefully, looking for stickers or other notifications of ingredient substitutions;
  • Call manufacturers and/or check on their websites frequently to understand which products may be affected by substitutions; and
  • Speak with your allergist about these changes and how they may affect your specific allergies.

 

 

[Read the FDA’s full policy here:  Temporary Policy Regarding Certain Food Labeling Requirements During the COVID-19 Public Health Emergency: Minor Formulation Changes and Vending Machines]

 

The FDA has issued this guidance without public comment due to the emergency circumstances.  However, their policy notes, “This guidance document is being implemented immediately, but it remains subject to comment in accordance with FDA’s good guidance practices.

Comments may be submitted at any time for FDA consideration. Submit written comments to the Dockets Management Staff (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852. Submit electronic comments to https://www.regulations.gov. All comments should be identified with the docket number FDA-2020-D-1139 and complete title of the guidance in the request.”

 

Food Allergies at the Food Pantry – Need Assistance? May 12, 2020

 

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Photo by Monirb CC BY-SA 4.0

Affording safe food is on the minds of many right now.  With layoffs, furloughs and unemployment, more people are turning to food pantries than ever.  But if you have a food allergy, you may be concerned about facing challenges to obtaining safe food.

 

If you have food allergies and need food assistance, here are some things to keep in mind.

 

Tips for Those Who Need Assistance

 

  • If you’re lucky to live near one, there are a few food allergy-specific food pantries operating in the United States.  Note: some have suspended operations due to COVID-19. They may, however, still be a resource for information during the lockdown.  Check out each organization’s page for eligibility requirements.

 

  • There are many local food pantries kindly serving the public right now and some are willing or already stocking safe supplies.

 

  • If you’re looking for specific allergy-friendly (or “free-from”) staples, those goods may be harder to find.  Sometimes, food pantries will shop for/hold items for those with medically necessary diets.  Call your local food pantry and explain your family’s needs.

 

  • Rather than relying on staff, check the food choices for you/your family personally, taking time to read labels.

 

  • Many of us are relying on brands we haven’t used before.  Read the ingredient labels of all food carefully.  Remember that allergens outside of the top 8 (dairy, eggs, wheat, soy, peanuts, tree nuts, fish, and shellfish) are not required to be labeled by their common name.  And manufacturers are not required to label for possible cross-contamination.  Call the manufacturer directly for more information.

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  • If there are prepared meals on site, ask a supervisor about whether the staff receives food allergy training and/or take measures to prevent cross-contact and always have your epinephrine auto-injector with you as usual.

 

  • Many schools are offering free lunches to their students.  Some are naturally free of certain allergens (often peanuts and tree nuts).  Call your local school district and speak with the food services manager to get details on how your district handles food allergies in these packaged meals.

 

 

  • It was just announced that SNAP recipients can buy groceries through Amazon. Shoppers get free delivery when they spend over $25.  Visit amazon.com/snap-ebt for more information.

 

 

  • Make your resources go further!  Use fresh food first, followed by frozen foods and pantry items.  Planning meal ahead of time with a thought towards how to incorporate leftovers into future meals helps eliminate waste and makes the best use of your food.

 

  • Food substitutions may be more practical than expensive free-from products.  For example, using applesauce ($2.75/jar) when baking may cheaper than buying specialty egg-replacer ($6.99/box). There are many great places to find these substitutions, like this one from Kids with Food Allergies.

 

 

 

AllergyStrong Presents at the Food Allergy Fund Summit January 28, 2020

Filed under: Advocacy — malawer @ 2:00 pm
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(My apologies! I am well overdue in posting about this excellent and always informative event.  Please be sure to see the full list of presenters and agenda on the Food Allergy Fund’s site.)

 

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[Click here to watch the Agents Of Change panel video – Food Allergy Fund Summit DC.  AllergyStrong begins around 33:00/34:00 minutes in.  But be sure to watch the entire video – every advocate and their efforts are highly impressive and so vital to our community.]

 

In November, I had the good fortune to attend and participate in the always-fascinating Food Allergy Fund Summit held at the Newseum in Washington, DC.

 

With the Capitol in the background, CNN’s Chris Cilizza moderated a day that brought together a diverse group of speakers.  Researchers, legislators, doctors, advocates, innovators, journalists and celebrities treated attendees on the current state of food allergies.  Themes of the day included:

  • The role of the FDA and state of federal funding
  • The psychology behind food allergy management during adolescence
  • The intricacy and mystery surrounding immune cell response
  • The latest immunotherapeutic innovations
  • The gut and microbiome’s role in immunology
  • Advocacy efforts

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A major theme of the day was the underserved community.  Dr. Hemant Sharma, Director of the Food Allergy Program at Children’s National Medical Center and Chief of the Division of Allergy and Immunology, spoke at length about health and racial disparities in food allergy.  Dr. Sharma outlined the unmet needs to the underserved community and how Children’s National Medical Center has set out to address them.

 

The subject of the underserved community is near and dear to my own heart.  I began AllergyStrong to address the needs of the underserved community.

 

As such, AllergyStrong was proudly featured on the Agents of Change advocacy panel alongside passionate and driven advocates like Mary Vargas, Lianne Mandelbaum, and JJ Volupas, moderated by Allergic Living Editor, Gwen Smith.

 

The word “underserved” is an industry term that refers to patients who lack access to critical resources – in this case, access to food, healthcare and education.  The underserved community encompasses low income patients as well as food insecure families, minority populations – especially those who lack adequate language skills to navigate the healthcare system, rural communities where resources are not easily accessed as well as at-risk patients such as those who find themselves using public assistance due to extreme weather, fire, or other natural disasters.

 

AllergyStrong exists to help bridge the gap in health education and awareness.  Several disparities we try to address:

 

  1. Access to medical care and resources.
    We work to promote and provide food allergy education to communities through community health clinics and school nurses.
  2. Lack of education and awareness.
    To promote education and awareness, we filmed a public service announcement this summer in partnership with some outstanding organizations.  Our PSA, Spell It Out aims to clear up misconceptions about food allergies and inform students and caregivers about the basic facts of living with the condition.  AllergyStrong works with organizations such as schools and food pantries to bolster support and protection for patients with food allergies.
  3. Access to affordable safe food.
    We also work with social services and case workers who serve clients with food allergies to help usher families through a difficult time.

 

To stay in-the-know about AllergyStrong’s activities and how you can help or participate, please subscribe to our newsletter here.

 

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What a day!  And, the perfect quote!

 

Click here to watch the Agents Of Change panel video – Food Allergy Fund Summit DC.  AllergyStrong begins around 33:00/34:00 minutes in.  But be sure to watch the entire video – every advocate and their efforts are highly impressive and so vital to our community.

 

FDA Review of Aimmune Peanut Therapy September 13, 2019

 

 

 

I was so honored to be chosen as a speaker at the US Food & Drug Administration’s (FDA) Allergenic Products Advisory Committee (APAC) meeting (September 13, 2019).  The purpose of this groundbreaking hearing was for the APAC to have a discussion and make recommendations to the FDA on the safety and efficacy of Aimmune’s AR101 peanut allergy treatment at reducing the risk of severe allergic reaction (anaphylaxis) after accidental and unintended exposure in children and teens with peanut allergy.

 

Representatives of major food allergy non-profits, knowledgable doctors with deep experience with desensitization, experts in psychology, the underserved population, patient advocacy as well as affected families offered an honest and complete picture of the lives and challenges of living with food allergies to the APAC panel.  Testimony focused on quality of life, psychosocial impact of food allergy, daily challenges, and unmet needs.  Discussion also centered on medical guidance, patient choice in regards to risk/benefit of AR101, and education as it relates to AR101 therapy.

 

It is my hope that the committee approves this treatment.

 

Until now, food allergy families have had only one management option: avoidance.  If the FDA approves AR101, it will standardize dosage, treatment protocol and, hopefully, increase its accessibility.  AR101’s approval could pave the way for more treatment options down the road.

 

APAC has recommended AR101 for approval.  Stay tuned for the full-FDA update.  Approval expected January 2020.

 

Here is the testimony I gave today:


Erin Malawer

Executive Director, AllergyStrong 

 

Food allergies are a challenge that affect both the physical safety as well as mental health of patients and caregivers.  Bringing AR101 (Palforzia) to market as a treatment option has the potential to greatly improve quality of life for these families.

 

What is the experience of having food allergies for patients?  In the words of my 14 year old son, “it’s a second, full-time job.”  And it starts the moment patients wake up beginning with:

  • The toothpaste they use to brush their teeth;
  • The sunscreen they wear;
  • The laundry detergent they wash their clothes with; and
  • The lip balm wear when I kiss my son goodnight.

 

Everything is a risk.

 

And, then there’s the FOOD!  Meals, snacks at school, the baseball stadium, the movie theater.  Patients must be knowledgeable about ingredients; how and where food is prepared and processed; as well as how to communicate and educate others about their condition.  The burden falls on families and caregivers to prepare safe food for holidays, school celebrations, birthday parties, field trips, and travel.

 

The thought and preparation is endless.  Food allergies are always on our minds.

 

Anything misread, any small misstep could potentially endanger a patient’s life.

 

 

The solution we’ve been given to keep him safe is simple, but daunting:  Avoid.

 

In order to do that effectively, each patient and their caregivers must understand both the seriousness of food allergies and the risks of cross-contamination.   But, we also need to be intimately familiar with labeling laws and loopholes as well as manufacturing practices. 

 

That keeps my child relatively safe at home.  But what about when he – and millions of other allergic children – step outside and navigate the real world?

 

Avoidance is challenging – it relies on the understanding of others – who are less experienced – for our health and safety.  Avoidance is cumbersome – labeling laws are incomplete, manufacturers aren’t always forthcoming and decision-making, even at its best, is difficult.  Avoidance accepts food allergies and all the associated worry, guilt, and burden as a life sentence and – because we all make mistakes – it accepts reactions as an inevitable. 

 

From an early age, my son understood these risks.  He has lived under the stress and reality that the next meal could cost him his life. 

 

At age 8, my son educated his own grandparents on what it’s like to live with food allergies.  “Grandpa,” he said, “I can’t be careful 75 percent of the time.  I need to be perfect 100 percent of the time.”

 

AR101 has the potential to change that.  If only he could have undergone treatment to lessen that incredible emotional burden.  AR101 (Palforzia) has the potential to make childhood easier for food allergy families.

 

Food allergic children and caregivers often struggle with anxiety, depression, and social isolation.  Many children experience bullying at the hands of peers as well as adults. 

 

In desperation, families are sometimes driven to turn to unregulated alternative treatments that leave them vulnerable and at risk.  Allowing for well-studied, standardized, accessible food allergy treatment outlines an established course of action for those looking for help.

 

AR101 (Palforzia) would be life changing for patients.  It offers much-needed hope for food allergic families; relieves mental strain on the patient as well as caregivers; allows room for inevitable error; and it dampens accidental exposure and threat of severe reactions.

 

It could specifically be transformative for patients in underserved communities where food allergy resources are often lacking, where emergency room visits are more common, and where reliance on those outside the food allergy community is necessary. 

 

I’d like to end by saying, at the present time my own child is ineligible for this treatment.  No matter what the outcome is today, he will continue to live under the specter of food allergies.  But professionally, I must advocate for patients who lives can be improved by AR101 (Palforzia) and the possibility of leading a more normal life. 

 

With this treatment, it may be possible for food allergy families to thrive and not merely survive.


 

 

 

“Spell It Out” PSA – The ABCs of Food Allergies September 10, 2019

Food allergies are a life-threatening condition that know no race, gender or economic status.  However, lack of awareness, education and preparedness are disproportionately affecting underserved families and communities where there is a higher percentage of dangerous reactions as well as higher costs of emergency care.

 

Filmed at a school that serves this population using real students with food allergies, “Spell It Out” is a public service announcement aimed at school children and their caregivers that addresses several key concepts about food allergies that are often misunderstood:

 

  1. Food allergies are real.  

Food allergies can be serious and life-threatening – different from a food intolerance which is an uncomfortable digestive condition but not life-threatening.

 

  1. Anyone can be allergic to any food at any age.

Food allergies are not simply a passing childhood condition. In fact, recent findings tell us that 1 in every 10 adults have food allergies, too.  And, despite their reputation, peanuts are not the only food to cause a serious reaction – you can be allergic to almost any food.

 

  1. Food allergies should be monitored by a doctor.

If you experience symptoms after eating, it’s important to talk to a doctor or nurse.  They can confirm a diagnosis, teach patients how to manage their food allergy, and help them get epinephrine – the only medicine capable of slowing or stopping a life-threatening reaction.

 

“Spell it Out” comes straight from the thoughtful and generous heart of Sammi Mendenhall, an Emmy-nominated producer who admits to being “that person who demanded peanuts on airplanes.” But after seeing the tragic story of Elijah Silvera on the news, she knew she had to learn more and educate others like herself.  She envisioned a project that could help and give a voice to those most at risk.  This project is a result of an amazing collaboration between several powerful advocacy organizations: End Allergies Together, AllergyStrong, Change for Kids, Elijah’s Echo, Natalie Giorgi Sunshine Foundation and Red Sneakers for Oakley.

 

Please visit spellitoutpsa.org for more information.

 

Feel free to share “Spell It Out” with your school – and contact us if you’d like information about an educational school visit for AllergyStrong or one of our outstanding partners.

 

Open Sesame: Prevalence of Sesame Seed Allergy & Progress in Labeling August 22, 2019

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If you have a sesame allergy, you know how hard it can be to determine whether a food is safe for you or not.  [Read here for more information on the challenges of living with a sesame seed allergy:  Sesame: The 9th Food Allergen?]. Patients and caregivers need more transparency and advocates have been asking the government for this change for years.

 

Last year, the U.S. Food and Drug Administration finally listened and requested additional information to evaluate whether to require food manufacturers to include sesame seeds (and its derivatives) on their ingredient labels.

 

In response, researcher Dr. Ruchi Gupta, Christopher Warren, Avneet Chadha, Jialing Jiang, and Dr. Scott Sicherer got to work figuring out how prevalent a sesame allergy really is.

 

Warren, Chadha and Sicherer revealed that 0.49% of the total US population are allergic to sesame seeds and its derivatives – more than doubling previous estimates.  This equates to approximately 1.6 million patients in the U.S. alone.  This means, more people are allergic to sesame than some tree nuts – for which the FDA currently requires labeling.

 

Their research also found that:

  • 1 in 4 patients developed their sesame allergy as adults
  • Sesame allergies tend to co-occur with other food allergies:
    • Half with sesame allergy are also allergic to peanuts
    • 1/3 also allergic to tree nuts
    • 1/4 also allergic to eggs
    • 1/5 also allergic to dairy

Furthermore, reactions to sesame tend to be more severe.  In fact, sesame is one of the top three allergens for which doctors prescribe epinephrine auto-injectors.

[For a look at the original study by Dr. Ruchi Gupta, Christoper Warren, PhD; Avneet Chadha; Dr. Scott Sicherer, et al, please see Prevalence and Severity of Sesame Allergy in the United States.]

What’s being done to include sesame on food labels?

A lot, actually.

 

First, the FASTER Act (H.R. 2117).  FASTER, which stands for Food Allergy Safety, Treatment, Education and Research, is a federal bill which includes improving the health and safety of those living with food allergies. The bill covers a wide variety of things including adding sesame to the list of food manufacturers must label properly for.  The FASTER Act was introduced to Congress in April 2019.

 

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Thanks to the amazing efforts of State Representative Jonathan Carroll, Illinois is now the first state to require sesame labeling on all foods just as they would under the federal law FALCPA.  Rep. Carroll hopes that law HB2123, now Public Act 101-0129 (July 26, 2019), will inspire other states to follow Illinois’ lead in protecting its citizens with food allergies.  Illinois is doing a lot of things RIGHT for their residents with food allergies!

 

So what can YOU do to help get sesame labeled under the Food Allergen Label and Consumer Protection Act (FALCPA)?

 

Right now, representatives are back home hearing from constituents.  Now is a great time to contact your local congressman or woman and encourage them to support the FASTER Act (H.R. 2117).

  • Tell them about the challenges of living with a sesame allergy.
  • Let your representatives know that the U.S. is one of the only industrialized nations that does NOT label for sesame at present.  The EU, UK, Australia and Canada already include sesame seeds on their labels.
  • Ask them to consider sponsoring a state bill, like the one in Illinois – this is how the stock epinephrine program became so successful.

 

And, please leave a comment below so that others can benefit from your experience advocating and listening to your local representatives as they speak to theirs.

 

 

 
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