Allergy Shmallergy

Simplifying life for families 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.

 

 

Food Allergy Advocacy – A Day on Capitol Hill May 16, 2019

When you live with a chronic disease like food allergies and asthma, you need support – the support of family and friends, but also support from the outside world.  Fifty-eight million people suffer from either asthma or food allergies.  Every year, 3,600 people die from asthma.  And, every 3 minutes someone is rushed to the hospital suffering from a severe food allergy reaction.  They are both serious and life-threatening conditions.

 

There are so many issues that need our collective attention – including legislative ones that support and protect patients with food allergies, asthma and other atopic diseases. We expect and are entitled to equal access to healthcare, research funding and education among other things.

When given the opportunity to join the Allergy & Asthma Network and contribute to the effort to better the lives of all food allergy and asthma patients, I jumped.  Over the course of one day, we visited fifty percent of all Senators and nearly 100 member of the House of Representatives.  We heard from doctors and nurses, families who have struggled within the existing healthcare system and those who have lost loved ones prematurely, and we were inspired by others striving to make lasting change.

Among the issues that need our attention are:

  • Access to quality, affordable healthcare
  • Access to affordable prescription medication and treatment
  • Continued and increased funding for federal health and research funding
  • Accurate and up-to-date food labeling

These issues translated into support for the following pending legislation that pertain to food allergy:

H.R. 1243/S. 523: Climate Change Health Protection and Promotion Act of 2019

Directs HHS to develop a national strategic action plan to help health professionals prepare for and respond to the public health effects of climate change.

My take:  Researchers are considering whether the way in which we produce and process our food has contributed to the rise in food allergies.  The nutrients that nourish our good bacteria in our microbiome has changed over the last 100 years.  Climate change has and will undoubtedly change the way we grow our food and the way in which our bodies respond to these changes.  

 

H.R. 2117:  Food Allergy Safety, Treatment, Education and Research (FASTER) Act

Requires that sesame be added to the current list of allergens that manufacturers are required to label for.  The bill would also provide the CDC funding to conduct data on allergy prevalence.

My take:  Sesame is the 9th most common allergen (and one of the fastest growing allergies in terms of prevalence) and it’s a particularly difficult one to avoid.  Ground into flour and paste, used as oil in beauty products, in addition to whole seeds, current labeling guidelines allow for sesame to be hidden in ingredient lists under general terminology like “spices,” “natural flavors,” and “seasoning.”  Customers want transparency in their food and beauty products.  And, labeling for sesame would bring the US closer to the [more thorough and higher] standards set in the UK, EU, Canada and Australia.

For more information on sesame seed allergies, please see Sesame: The 9th Food Allergen?

 

H.R. 2468  School-Based Allergies and Asthma Management Program Act

Increases grant preference to states that implement school-based asthma and allergy management programs (including student action plans and emergency medication administration education/training for staff).

My take:  Schools are concerned with how to handle the increasing number of students with food allergies.  And they should be.  Studies show that 30 percent of stock epinephrine use was for students and staff with no known history of allergies.  But schools lack the funds to improve and increase training on the emergency medication [epinephrine] that will ensure administration when it’s so critically needed.  Immediate administration of epinephrine is associated with more favorable outcomes during anaphylaxis.  Familiarity with the signs and symptoms of a severe reaction leads to accurate, faster treatment, better protection for students and reduces school liability.

 

Not in D.C.?  How you can advocate from where you are:

  1. Call your state’s representatives and encourage them to support these and other legislation that protects patients.
  2. Start local!  There are towns, cities and counties across the country that are doing things right.  For example, there are a few places where police and bus drivers are trained to carry and administer epinephrine.  Is your town one of them?
  3. Work with your state senators and local representatives to allow stock epinephrine to be placed in public venues.
    • In Connecticut, Representative Robin Comey is trying to pass legislation that does just that through Senate Bill 706. If you live in CT, contact your legislators and ask them to support 706 to give entities access to stock epinephrine and the ability to protect those experience life-threatening reactions.
    • In New York City, Elijah’s law (NY S218A) proposes to mandate training  and establish emergency procedures for early child care centers and preschools in New York City.

 

It is an honor and a privilege to help improve rights for patient and families like ours and to play a part in our government at work.  By representing all our voices, it was clear we illustrated what is important to constituents and elevated these important issues for our representatives.

 

Find your own way to keep the momentum going!

 

 

Highlights from the Inaugural Food Allergy Fund Summit – April 2019 May 7, 2019

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If you couldn’t attend the Food Allergy Fund’s inaugural summit last week, you’re in luck because I took copious notes!  In addition to the highlights below, the Food Allegy Fund posted my official summary over on their site.

 

So many areas of food allergy converged at the Paley Center in New York City on April 4th:  research, immunology, pediatrics, psychology, product innovation, advocacy, professional chefs and restauranteurs.  And each attendee arrived with their own lens through which they view food allergies.  Needless to say, interesting people provoke interesting conversations.  I nearly filled a notebook with all the information I gleaned that day, but here are some of the stand-out highlights:

 

Dr. Patrick Brennan, recipient of FAF’s first $100,000 Innovator’s Research Grant, kicked the summit off by stating optimistically and quite matter-of-factly, “Food allergy is a solvable problem” and later continued to encourage patients about the future of food allergy research by declaring, “Innovation really comes through philanthropy.”

 

Next, Linda Herbert took the stage. As the Director of Psychosocial Program for the Department of Allergy and Immunology at Children’s National Medical Center, I could listen to her talk all day.  Of the many, many fascinating things she said, here are two big ideas to think about:

  • Human nature dictates that we crave predictability and human connection. Food allergies get in the way of both of those innate desires.
  • With immunotherapy on the rise, it is expected that families will be more anxious and will need the help of mental health professionals even more frequently.

FAFSummit 2 Innovators Pitch

 

Susie Hultquist, CEO and Founder of the app Spokin, likened the current status of food allergy innovation to renting VHS tapes.  Of where innovation stands, she says, “We’re in the Blockbuster age.  We need to take this in the Netflix era.”

FAFSummit Parent Advocates

An emotionally charged panel of parents turned advocates dominated the stage, moderated with both kindness and generosity by CNN’s Chris Cillizza, a fellow food allergy parent.

  • Lianne Mandelbaum of No Nut Traveler talked about airlines and their policies towards food allergies:  “They are consistently inconsistent”.  
  • Clearly, we need practical procedures that can be consistently enforced across entire fleets and around the world.  For example, of carrying epinephrine auto-injectors on airplanes, Lianne stated, “We have the tools and we need to be able to use them.”
  • Georgina Cipriano of Love for Giovanni Foundation reminded the audience, “Please stress that epinephrine is safe.  Please stress that it only hurts you when you DON’T use it.”

 

The amazing Dr. Ruchi Gupta hit the stage to talk about the lens-changing research she and her team have accomplished and what they are working on next.  Importantly, if you have ideas for school and community-based food allergy research – let her know.

 

Dr Hugh Sampson, COO of DBV Technologies and Director Emeritus of the Jaffe Center at Mt. Sinai described the development of a new diagnostic tool to test not only for the presence of food allergy but for the possibility of reactivity as well as response to immunotherapy.  In other words – it could show how someone’s immune system sees each food and create a unique “fingerprint” for food allergic response.

FAFSummit 3 Chefs

Celebrity chefs and restauranteurs Elizabeth Falkner, Amanda Freitag and Ming Tsai took the stage with so much experience and a lot of humor.  Ming Tsai is a food allergy parent and pioneer; Amanda Freitag, allergic to hazelnuts, understands food allergies firsthand; and Elizabeth Falkner is a longtime food allergy advocate.  The chefs agreed that having a system in place to handle food allergies in a restaurants kitchen is critical.  “Five or six food allergy requests can shut down a line if you don’t have a system,” according to Ming Tsai.  Amanda Freitag spoke about her own family’s experience dining out with food allergies.  Like many families, she and her family are loyal customers of certain establishments. “We frequent these restaurants because they take care of us.”  And with refreshing perspective, Elizabeth Falkner stated that she welcomes food allergy requests in her kitchen, “As a chef, I like challenges! I view it as a creative exercise.” Don’t we wish every chef was more like her!

 

The Food Allergy Summit had something for everyone.  Thank you to the Food Allergy Fund and a special thank you to all the presenters and panelists for a very stimulating day.  For a full summary of the inaugural Food Allergy Fund summit, please read here.

 

 
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