Articles for Advocacy

Advocacy at all levels of government is essential in creating a society that is safe for all who are managing allergies. And because people with allergies fly long distances in air planes, it is essential that they be stocked with epinephrine and staffed with people who know how to use it. There are many who advocate for policies that support allergy safety on airlines. Many thanks to Representatives Chrissy Houlahan (D-PA) and David Valadao (R-CA) for taking a leadership role in requiring the stocking epi-auto-injectors on all flights.

Read the details of their progress and encourage them to continue the push. The allergy community will be watching.

US House Members Call for Epinephrine Auto-Injectors to be Mandated on All Flights

By Dave Bloom
June 22, 2023

Epinephrine is the only drug that can halt and reverse the progression of anaphylaxis, a serious, life-threatening allergic reaction to a food, drug, insect venom, or environmental substance, provided it is administered in a timely fashion. While epinephrine is normally carried in emergency medical kits aboard commercial flights, it is often in vial form that requires a trained medical professional to administer the drug via syringe.

That poses two problems. First, there is no guarantee a trained medical professional will be aboard any given flight, and finding that person, drawing the correct dose of the drug and administering it takes precious time during an anaphylactic emergency.

In April of this year, Dr. Lindsey Ulin, a resident physician in the Department of Internal Medicine at Brigham and Women’s Hospital, was flying from Phoenix to Austin when she realized she was starting to feel the telltale signs of an anaphylactic reaction for the first time. Luckily, another doctor was on the flight and was able to administer epinephrine in time.

Toni Taylor
June 14, 2023

Congratulations to all those in New York State and the national allergy community who advocated on behalf of Teacher Epinephrine Information bill S209A. After 13 years it finally passed both chambers and is on the way to the Governor for signature. As Governor Hochul considers signing this important piece of legislation into law, ideally in time to be implemented when school starts in September, we have a book recommendation that perfectly illustrates the need.  Check out the book recommendation for the Governor as she considers signing the bill.On May 2nd, we hosted the annual gathering of advocates for Food Allergy Awareness Day NY 2023 in Albany. After a few years of Zoom advocacy, this was the first time since the pandemic our event was held in person at the state capitol in Albany. With many new legislators to share our concerns with, I think being together face to face made for a much more personal and positive experience.

Advocates gathered in Albany for Food Allergy Awareness Day NY 2023, marking the first in-person event since the pandemic. They shared concerns with legislators, emphasizing face-to-face interactions. Progress was made on teacher training and public access to epinephrine proposals. Urgent need for anaphylaxis emergency training in schools was highlighted.

Food Allergy Awareness Day NY '23 Report

By Jon Terry
May 18^th, 2023

Greetings. I sincerely hope everyone has had a pleasant Memorial Day holiday weekend.

On May 2nd, we hosted the annual gathering of advocates for Food Allergy Awareness Day NY 2023 in Albany. After a few years of Zoom advocacy, this was the first time since the pandemic our event was held in person at the state capitol in Albany. With many new legislators to share our concerns with, I think being together face to face made for a much more personal and positive experience.

It was a very crowded and bustling day at the Legislative Office Building, with many people waiting in line to visit the capitol. Since the NYS budget wasn't finalized, almost every lawmaker was spending all their time inside the house chamber. Meetings with lawmakers were strictly on a catch-as-catch-can basis. The most important part of Food Allergy Awareness Day isn't how long each meeting is but how many meetings you can deliver your message in person.

While we are very happy the FASTER Act passed, implementation by food manufacturers continue to put food allergic consumers at risk. To that end, Dave Bloom of SnackSafely suggests aligning implementation requirements with developing research about the number and type of food allergens.

Suggestion for FASTER Act Implementation Concerns. FDA Issues New Draft Guidance Regarding Allergen Labeling and Cross-Contact

By Dave Bloom
2023/05/17

The US Food and Drug Administration (FDA) issued new draft guidance to FDA staff yesterday regarding allergen labeling and cross-contact. Spoiler Alert: the draft does nothing to help the food allergy community.

Instead, Sec. 555.250 Major Food Allergen Labeling and Cross-contact Draft Compliance Policy Guide guidance simply reiterates regulations established under the Food Allergen Labeling and Consumer Protection Act of 2014 (FALCPA), the Food Safety and Modernization Act (FSMA), and the FASTER Act of 2021 that took effect in January making sesame the ninth top allergen.

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.