Articles for Advocacy

Sesame Joins the Major Food Allergens List, FDA Says

Great news! The FASTER Act is now officially the 9th allergen requiring food manufacturers to include sesame on all food labels where sesame is present.

Sesame Joins the Major Food Allergens List, FDA Says

A pile of sesame seeds on a light blue surface

By Kristen Rogers
January 2, 2023

Sesame has joined the list of major food allergens defined by law, according to the US Food and Drug Administration.

The change, which went into effect on January 1, comes as a result of the Food Allergy Safety, Treatment, Education and Research Act, or FASTER Act, which was signed into law in April 2021.

The FDA has been reviewing whether to put sesame seeds on the major food allergens list — which also includes milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat and soybeans — for several years. Adding sesame to the major food allergens list means foods containing sesame will be subject to specific food allergen regulatory requirements, including those regarding labeling and manufacturing.

Sesame allergies affect people of all ages and can appear as coughing, itchy throat, vomiting, diarrhea, mouth rash, shortness of breath, wheezing and drops in blood pressure, Dr. Robert Eitches, an allergist, immunologist and attending physician at Cedars-Sinai Medical Center in Los Angeles, told CNN in 2020.

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People with Allergies Have to Be a Lot More Careful in 2023

While FASTER being the law of the land as of January 1, 2023, Lauren Harkawik details how food manufacturers are working against the intent of the Act by adding sesame to more foods and including it on all labels. While some grocers, restaurants and manufacturers are implementing FASTER correctly (nice job Whole Foods) many are using this work around that is endangering our community.

People With Allergies Have to Be a Lot More Careful in 2023

Olive Garden bread sticks made with sesame flour
Order of Olive Garden Breadsticks, which now contain sesame

By Lauren Harkawik
January 12, 2023

On January 1, the FASTER Act (which stands for Food Allergy Safety, Treatment, Education, and Research) went into effect at the federal level. One of the major elements of the law was adding sesame to the list of “major allergens” that restaurants and food manufacturers are required to flag as an ingredient. One would think this change would make it easier for people with sesame allergies to navigate eating at restaurants. Unfortunately, it could have the opposite effect.

How the FASTER Act affects people with sesame allergies

While it is true that people with sesame allergies will be better able to access the nutritional information they need in order to make decisions about what they eat, they’ll have to exercise excess caution while dining at restaurants. That’s because some food manufacturers have decided that rather than taking the extra steps to ensure their manufacturing lines don’t have any cross-contamination with sesame products, they’re adding sesame to foods that previously contained none. That way, they don’t have to alter their current processes or equipment (both costly procedures), and the allergen info can simply indicate the food has sesame in it. Because now it does.

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Surgeon Exposes Airline Medical Kit Deficiencies after Assisting with Flight Emergency

If you are traveling by air, have a food allergy and are at risk of anaphylaxis just how safe are you flying on an airliner? While in-flight medical emergencies are rare, the FAA requires airlines be prepared. Shiv Sudhakar reports that a surgical oncologist assisting in an in-flight emergency found issues with an airline’s preparation. Lianne Mandelbaum, founder of No Nut Traveler, explains how airlines should be prepared to assist their food allergic passengers.

Find out what the doctor found and to keep you & your safe on a flight.

Surgeon Exposes Airline Medical Kit Deficiencies after Assisting with Flight Emergency

Facing front of a jet

By Shiv Sudhakar
August 17, 2022

Dr. Andrea Merrill, a surgical oncologist in Boston, is raising awareness about the need for better airline emergency medical kits after a tweet of hers went viral recently.

She helped out on an in-flight emergency this summer — and learned a great deal.

Now, she's speaking out and hoping others step up to provide better equipment on board flights. Already, there has been response.

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Q&A with Sung Poblete

Allergists insist that epinephrine is the only first treatment for an anaphylaxis emergency. Yet during the past 15 years the cost of epinephrine has sky-rocketed to unaffordable heights for many patients. Sung Poblete, PhD, RN, CEO of Food Allergy Research and Education (FARE), answers important questions about how the effect of these costs can be lessened, improving access to life-saving epinephrine auto-injector (EAI) devices.

Find ways to make epinephrine affordable.

Q&A with Sung Poblete:
Programs Aim to Reduce Epinephrine Costs for Families with Food Allergies

Woman injects epinephrine into her left thigh

By Richard Gawel
By Sung Poblete, PhD, RN
Fact checked by Kristen Dowd

August 10, 2022

Although epinephrine could be a lifesaving drug for the 32 million people in the United States with food allergy, costs can make obtaining its protection difficult.

UnitedHealthcare recently eliminated out-of-pocket costs for epinephrine among the patients it covers, but more work remains, Sung Poblete, PhD, RN, CEO of Food Allergy Research and Education (FARE), told Healio.

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BOOK REVIEW--The End of Food Allergy

We’re all familiar with the 32 million and growing number of Americans with life-threatening food allergies and that 5.6 million of them are children. In their 2020 book, The End of Food Allergies, Kari Nadeau, MD, PhD and Sloan Barnett offer information, guidance, and hope for anyone struggling with food allergies. A frequent contributor to this newsletter, Kristen Stewart reviews their book, sharing their hope for the future.

The End of Food Allergy: The First Program to Prevent and Reverse a 21st Century Epidemic

left-Sloan Bennett; right-Kari Nadeau below 'End of Food Allergy'
L-Sloan Bennett; R-Kari Nadeau

By Kari Nadeau, MD, PhD and Sloan Barnett
Book review by Kristen Stewart
August 15, 2022

When I recently picked up End of Food Allergy: The First Program to Prevent and Reverse a 21st Century Epidemic by Kari Nadeau, MD, PhD and Sloan Barnett, I saw the proclamation on the cover — "Featuring Immunotherapy." Naturally I thought that was its subject. It turns out I was both right and wrong.

This book does provide detailed information about immunotherapy, the state-of-the-art treatment that can re-educate the immune system in a matter of months to no longer see allergy triggers as cause for alarm. But that is not all. As an added bonus, it takes the reader on a deep dive into everything one needs to know about food allergies.

Dr. Nadeau, Director of the Sean N. Parker Center for Allergy and Asthma Research at Stanford University, has extensive knowledge and experience in the field after decades conducting trailblazing research and working with food allergy families. As a lawyer, journalist and author of the bestselling book about clean and healthy living Green Goes With Everything — and a mother to two children with food allergies who have successfully undergone immunotherapy — Ms. Barnett brings her own important skills and experiences to the duo. The result is a wide-ranging book full of important information that is an interesting, enjoyable read.

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Patient Story: Why Minutes Count with Anaphylaxis

If you or a loved one is suffering from an anaphylaxis emergency, MINUTES MATTER! Epinephrine is the first-line treatment for anaphylaxis; immediate administration is essential to saving lives. In this article Sandra Fusco-Walker, a patient advocate for over twenty years, shares her story of when her husband, who had no previous history of life-threatening allergies, suffered an attack of anaphylaxis. Her story is an important reminder that MINUTES MATTER!

Patient Story: Why Minutes Count with Anaphylaxis

Black Woman Injecting Epinephrine

By Sandra Fusco-Walker

As a patient advocate for 20+ years, I’ve met so many families who have lost loved ones to anaphylaxis. Those who died had one thing in common. They didn’t use epinephrine. Either they weren’t aware they had a severe allergy and never had a prescription, they forgot to carry it, or they thought they did not need it anymore.

National guidelines emphasize epinephrine is the first line of treatment for anaphylaxis. Using it  makes the difference between life and death … and minutes count.

My mantra as an advocate was always, “When in doubt, give the shot!” The medication won’t harm you if you really don’t need it – but anaphylaxis will, and it just might save your life.

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WI Governor Signs “Dillon’s Law 2.0”

Dillon Mueller was an 18 year old Eagle Scout when he died Oct. 4, 2014, after suffering a severe allergic reaction from a bee sting. There was no epinephrine available in the first aid kits of either the friend with him, or the arriving volunteer first responders. From this tragedy, “Dillon’s Law”, was enacted in Wisconsin, in 2018, to help promote greater access to life saving epinephrine. Recently Wisconsin Governor Tony Evers signed “Dillon's Law 2.0”, building on the previous legislation that helps greater access to life saving epinephrine.

WI Governor Signs “Dillon’s Law 2.0”

Dillon Mueller on Dirt Bike
Dillon Mueller

April 10th, 2022

“Dillon’s Law 2.0,” which expands the availability of epinephrine auto-injectors for individuals having a life-threatening allergic reaction, was signed into law today by Wisconsin Governor Tony Evers.

State Sen. André Jacque (R-De Pere), lead Senate co-author, and Assembly co-author Rep. Shae Sortwell (R-Gibson), said this new law is a common-sense expansion of the original 2018 Dillon’s Law that will make saving lives even easier.

“Dillion’s Law is especially important, because it is life-saving legislation born from tragedy, and a continuing legacy,” said Sen. Jacque.

Eighteen-year-old Dillon Mueller died Oct. 4, 2014, after he suffered a severe allergic reaction from a bee sting when no epinephrine was available in the first aid kits of either the friend with him, or the arriving volunteer first responders.

“Dillon himself was an Eagle Scout preparing to take over the family heritage farm,” Rep. Sortwell said. “Had there been an epinephrine auto-injector available to counteract a simple bee sting, a fine young man with his whole life ahead of him would very likely be alive today.”

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We Need Anaphylaxis Emergency Training for NYS Teachers

“One in 13 children has food allergies. That equals two kids at risk for anaphylaxis in every classroom across America”, according to data from the nonprofit advocacy group Food Allergy Research & Education (FARE). If ever there was a statistic that proves the need/importance/value of anaphylaxis emergency training for NYS teachers, that stat would be it. Learn more about the challenges that parents face, the ongoing efforts to promote emergency training for NYS teachers and the "Teacher Training'' bill (A523 and S587) re-introduced this year.

We Need Anaphylaxis Emergency Training for NYS Teachers

Epinephrine First! Period! on School Chalk Board

Jon Terry
15 April 2022

Greetings. Concerning life-threatening allergies and anaphylaxis, just how safe are kids in New York State public schools? What laws are currently in place to protect kids from anaphylaxis emergencies? Are there loop-holes, gaps or errors in childcare at schools that need to be corrected? While discussing these questions in this article the Allergy Advocacy Association provides new developments and context.

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New Report Finds Major Gaps in Child Care Policies for Food Allergy Nationwide

Having a food allergy can be difficult and at times very frightening. For the parents of a child with a life-threatening allergy, both are true. Parents are vigilant but can’t be with their children 24/7 to monitor what foods they encounter. Often a child-care facility is the one to do monitoring for a portion of the day. But what is required for this important role? A new report by the Asthma and Allergy Foundation of America (AAFA) and the Elijah-Alavi Foundation (EAF) titled "Child Care Policies for Food Allergy: Elijah’s Law Report for the U.S. States and Territories compare state-level child care licensing regulations against nine core policy standards that protect children with food allergy in a child care setting.

New Report Finds Major Gaps in Child Care Policies for Food Allergy Nationwide

Elijah Silvera poster

By News Wire ~ 3rd Party Press Release

The report evaluates child care policies in U.S. states and territories and includes an advocacy toolkit to promote Elijah’s Law to strengthen protections for young children.

Washington, D.C., Feb. 25, 2022 (GLOBE NEWSWIRE) —

Today, the Asthma and Allergy Foundation of America (AAFA) and the Elijah-Alavi Foundation (EAF) released “Child Care Policies for Food Allergy: Elijah’s Law Report for the U.S. States and Territories.” The report compares state-level child care licensing regulations against nine core policy standards that protect children with food allergy in a child care setting.

“Our report identified major gaps in child care regulations for food allergy,” states Kenneth Mendez, AAFA’s CEO and president. “To improve protections, the report also includes a toolkit to help advocates and legislators introduce and enact Elijah’s Law in their states.”

Elijah’s Law is named in memory of Elijah Silvera. On Nov. 3, 2017, 3-year-old Elijah died after having a severe allergic reaction (anaphylaxis) at his child care facility. Though the facility had documentation of Elijah’s life-threatening milk allergy, asthma, and other allergies, the staff fed Elijah a grilled cheese sandwich. The child care did not follow emergency protocols to treat anaphylaxis.

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It’s a Brand-New Year But Labeling in the US Remain s a Danger to the Allergic Community

If you have food allergies, then reading a product's label is second nature. It's what you do to help keep you safe. But what happens when a product’s label doesn’t tell the whole story? Listing the ingredients is essential, and required by the FDA, but what about how a product is made? The FDA doesn’t require what is known in the allergen community as Precautionary Allergen Labeling (PAL).

Without that type of information, those suffering allergies can still be at risk. Learn more about PAL and how you can tell the FDA of its importance.

It’s a Brand-New Year But Labeling in the US Remain s a Danger to the Allergic Community

Snacksafely FoodLabel with text
Dave Bloom
Dave Bloom

Dave Bloom

Welcome to 2022! You’ve made your resolutions, hung that brand new “World’s Cutest Puppies” calendar, and are ready to start a fresh new year bursting with endless opportunities!

But what hasn’t changed with the new year are the regulations that govern how manufacturers are required to warn you about the potential for allergen content in the food products you buy. In many cases you are flying blind, relying on manufacturers to decide whether and how to disclose the potential for allergen cross-contact in the foods you purchase for your family.

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A New Beginning in New York State

With the changes in New York State leadership, it is a good time to reflect on our legislative accomplishments over the past ten years and the future for other potential opportunities. Working with activists, medical professionals and legislators and their staff, the Allergy Advocacy Association has helped create a positive change for those suffering from life threatening allergies. We look forward to even more progress in the years to come.

Albany NY skyline illustration

August 19th, 2021
By Jon Terry

Dear friends;

Greetings from Brockport. I sincerely hope all readers of our monthly e-newsletter have had a safe and healthy summer.

Now that a new state governor is taking over in Albany, I think it’s a good time to review legislative achievements of activist advocates on behalf of individuals at risk for anaphylaxis and families dealing with life-threatening allergies.

During the last 10 years in NYS, the governor has signed into law five very important bills.

    1. The Nurse Authorized Stock Epinephrine Act.
      This law authorizes public central schools the ability to obtain a non-patient prescription so they can possess and administer epinephrine auto-injector (EAI) devices in anaphylaxis emergency situations.
      NASE has been enacted in 47 states across America, including NY. According to data from the America Academy of Allergy, Asthma and Immunology, in just a few years after enactment, NASE has saved THOUSANDS of lives in central school districts all across our country.1
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