Articles for Advocacy

Co-founder of the Allergy Advocacy Association, Toni Taylor and I are working to create a clearinghouse for allergy and anaphylaxis information by using a program of awareness, alertness and action. We have made progress at the local, state and national level, yet ignorance and apathy remain a threat to individuals and families with life-threatening allergies. We must honor what we have accomplished and keep moving forward to raise awareness of dangerous anaphylactic reactions.

Why I Believe Advocacy Is a Journey, Not a Destination!

By Jon Terry
April 15^th, 2023

Greetings. I sincerely hope you are enjoying the spring season.

"Are we there yet?" I often think about my life in terms of "arriving," especially "on time" and at "the right location." By setting a "destination" for myself sometimes I can get my personal journey started and work steadily towards finishing what I have to do to get there. Sometimes. However, I often find myself growing tired of the road I've taken, that my journey is taking too long and I need to stop. I don't turn around and return to my starting point. I simply want to get off this road, onto another one and start a new "journey!"

Great work is done to pass legislation that supports safe, broad-based availability of epinephrine, resulting in more epinephrine in our schools. It is then discovered that much of that epinephrine is locked up in cabinets, rooms and buildings, far removed from those that might need it. Often the keys can’t be found. Read Jon’s thoughts on potentially dangerous gaps in implementation of legislation, where he refers to a recent article by Lianne Mandelbaum of No Nut Traveler for Allergic Living.

By: Jon Terry
January 25, 2023

Unlock the epinephrine!

By Jon Terry
March 6^th, 2023

Greetings to one and all.

Work continues to ensure broad based availability of epinephrine for those managing life threatening allergies, especially in schools. In New York State, there is legislation allowing students to carry their own epinephrine, nurses to stock epinephrine and for everyone in the state to be trained and equipped to know when and how to administer epinephrine. As a result, there is more epinephrine available in the community for anaphylactic emergencies. However, much of this life saving drug currently stocked in schools is locked away in cabinets, other rooms, and even buildings and not readily available in an emergency. Often times, no one knows where the keys are. Because the timely administering of epinephrine in an emergency saves lives and the drug is harmless to everyone else, it makes no sense to keep it locked away in a school setting.

Join FARE in thanking Senators Duckworth and Durbin for sponsoring federal Protecting Children with Food Allergies Act to strengthen training cafeteria workers around the country receive information on recognizing and preventing food allergy reactions.

FARE Thanks Senators Durbin, Duckworth for New Bill to Make Schools Safer, Help WIC Families

January 26, 2023 (McLean, VA) –

Today, FARE, (Food Allergy Research & Education) thanked Senators Dick Durbin (D-IL) and Tammy Duckworth for their leadership in authoring and introducing the Protecting Children with Food Allergies Act that would strengthen food allergy training for the nation’s estimated 50,000 cafeteria workers and assist state Women, Infants, and Children (WIC) employees in providing information about recognizing and preventing food allergies to help the nearly 50% of American families relying on WIC for nutritional assistance.

“On behalf of the more than 32 million Americans suffering from life-threatening food allergies, especially the nearly 6 million children between zero and 18, FARE thanks Senators Durbin, Duckworth, and their staffs for working on this legislation for more than a year and introducing the Protecting Children with Food Allergies Act,” said FARE CEO, Sung Poblete, Phd RN. “This bill, if passed, would make an immediate impact in our nation’s nearly 98,000 public schools and among the most economically vulnerable of Americans who rely on WIC to provide their newborns with nutrition assistance.”

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

Sesame Joins the Major Food Allergens List, FDA Says

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.

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

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.

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

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.

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

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.

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.

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

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.

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

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.

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”

April 10^th, 2022
MADISON, WI

“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.”

“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

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.