Articles for Advocacy

EAI Injectors Still in Short Supply

One of the main reasons we are traveling to Albany is to advocate for a bill that would allow pharmacists to dispense and offer training on the lowest cost EAI device to consenting patients, unless specifically prohibited by the allergist. Kristen Stewart gives us an update on Epi-PenTM availability at pharmacies in the Albany area, which is most likely similar to Rochester. Unfortunately the news is not great as shortages remain. David Bloom’s article provides a list of alternatives to brand name Epi-PenTM so be sure to discuss them with your doctor if you are having difficulties filling your prescription.

EAI Injectors Still in Short Supply

EpiPen World Wide Production Line cartoon

By Kristen Stewart
May 8th, 2019

The numbers are in and they aren't looking good for epinephrine auto-injector (EAI) availability.

As the EAI shortage passes the 18-month mark, many news outlets have covered the topic and moved on. At the Allergy Advocacy Association, however, we think we should be doing just the opposite. The fact that this life-saving medication is still so difficult to find even after all this time deserves more attention not less.

Toward that end, we conducted our own survey on availability. We contacted 10 pharmacies in the greater Albany area on March 7, April 11, and May 1 of this year to find out the status of their brand name and generic supplies. The news was not encouraging.

In March, four pharmacies had brand name Epi-PenTM while eight had generics. Only one had neither available.

The news was slightly better by April. One less pharmacy had the brand name but nine were carrying generics so something was available at almost every location. Unfortunately, again one pharmacy had neither — though it was a different pharmacy than the previous time indicating all were receiving some supplies and then running out again.

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Epi Near You New York Volunteers Spread the Word on Anaphylaxis

Educating the general public about preventing anaphylaxis is one of the main goals of the Allergy Advocacy Association. We are actively recruiting volunteers from the medical field to assist us in providing training to day care center teachers, recreation center staff, scouting organizations and school of nursing students, and are very appreciative of the volunteers we have thus far. This month we are spotlighting two of our volunteers who have had close calls with anaphylaxis themselves, so we hope this will inspire others to join us!

Damien Rzepka with daughter
Damien Rzepka with daughter
Sandy Glantz
Sandy Glantz

Epi Near You New York Volunteers Spread the Word on Anaphylaxis

By Suzanne Driscoll
May 7th, 2019

Your Allergy Advocacy Association is fortunate to have so many great volunteers for our Epi Near You New York anaphylaxis emergency training program. Many of them are from the healthcare field who donate their time and talents to training a variety of audiences in the Rochester area. They educate teachers at daycare centers, nursing students, and counselors at summer camps and recreation centers on the dangers of anaphylaxis and how to administer epinephrine. This month we would like to spotlight two of our volunteers, Damien Rzepka and Sandra Glantz. If you are interested in becoming one of our ENYNY trainers, please give Jon Terry a call at 585-319-6848.

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Food Allergy Awareness Day!

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Activists attending Food Allergy Awareness Day; May 2018 in Albany, NY

Our Association supports annual event at the New York State Capitol

April 15th, 2019

The Allergy Advocacy Association will be making our annual trip to Albany for Food Allergy Awareness Day on Wednesday, May 15, 2019 from 9am – 2pm. This event is sponsored by NYS Senator Gustavo Rivera and AM Thomas J. Abinanti. We will be there supporting individuals and families with life-threatening allergies, starting with a media event at 12:00pm followed by meetings with state legislators later in the afternoon. Please help our important program of AWARENESS, ALERTNESS and ACTION by joining us in our advocacy efforts. Here are all the location details as well as a few of the newly proposed bills intended to improve access to life-saving epinephrine in New York State.

Wish us luck and we hope to see you there!

Food Allergy Awareness Day!
NYS Capitol Albany, NY
Legislative Office Building
198 State St, Albany, NY 12210
Wednesday, May 15, 2019 9am-2pm
Exhibit Location: Glass doors
at the LOB entrance on the
Concourse level
 

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Allergy Advocacy Association Donates Funds for EAI devices at Roberts Wesleyan

When college students are living away from home for the first time, it becomes more of a challenge to avoid certain foods and other allergens. We were pleased to donate $1,100 to Roberts Wesleyan College recently for the purchase of three packs of epinephrine auto-injector (EAI) devices to be stocked at various locations throughout the campus. Health Center coordinator Blandine Burks was very grateful to receive our donation and describes how the pens will be used.

Roberts Wesleyan College logo

Our Association awards grant to stock NPS EAI devices on Campus

By Suzanne Driscoll
April 12th, 2019

“Thank you for your generosity, support and breath of life!” says Blandine Burks, Coordinator of the Health Center at Roberts Wesleyan College. The Allergy Advocacy Association was pleased to award Roberts Wesleyan College $1,100 for the purchase of three packs of epinephrine auto-injector (EAI) devices to be stocked, with one for the health center, one for the athletic trainer and one for campus safety.

As authorized by New York’s Emergency Allergy Treatment Act (EATA), the college is making epinephrine available for students, staff and visitors as needed. With a non-specific epinephrine prescription, trained college staff will be able to administer epinephrine to anyone suffering from anaphylaxis.

Ms. Burks heard about the Association’s grant program while attending a training session at St. John Fisher College last fall. Previously, the health center and the athletic trainer split an Epi-PenTM pack with each person taking one pen. At the training given by Dr. Syed Mustafa, they realized in a serious anaphylaxis situation a person usually needs to receive two applications of epinephrine, so they no longer share EAI device packs.

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EAIs Still in Short Supply

It’s a scary situation when you go to fill a prescription of a brand name EAI device and there are none available. With a shortage still going on particularly for pediatric dosages, there are some viable alternatives such generic brands and the AUVI-Q. For more information on alternatives to the Mylan Epi-PenTM and an editorial on the current situation, see the full article here:

EAIs Still in Short Supply

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Illustration by Jon Terry

March 15th, 2019
By Kristen Stewart

With spring almost here we can see changes all around us from warmer weather to longer days. Unfortunately, we are not seeing anything different when it comes to the availability of epinephrine auto-injectors (EAIs).

A recent survey of pharmacies in the Albany, New York area found 60% had no brand name EAIs in stock, and of those who did they were often in very short supply and/or didn't have all dosing options available. Generics fared a bit better with 80% of polled pharmacies reporting having one or more at their store in at least one dosing amount.

A similar situation was echoed by Dr. Steve Moore, President-Elect of the Pharmacists Society of the State of New York, and a pharmacist in Plattsburgh. "There is still a shortage from what we're seeing," he said. "The brand name EAIs are unavailable. There's an issue with the pediatric dose and some of the generics in particular are not available in either strength. We have one generic and it's the adult dose and we don't have any of the pediatric. So while we do have something we don't have everything."

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Standard Anaphylaxis Action Plans are a MUST

Your Allergy Advocacy Association was concerned to find out there is not a standard Anaphylaxis Action Plan form used by doctors to communicate with a child’s school. We were also surprised to learn that many pediatricians as well as allergists are recommending that Benadryl be administered first for any signs of an allergic reaction, serious or not. We interviewed school nurses as well as allergists for their opinion on the matter and uncovered a lot of issues with how schools are being informed about allergies in children.

Standard Anaphylaxis Action Plans are a MUST
for ALL NYS Central School Districts!

Action Plan sign

By Suzanne Driscoll March 15th, 2019

How to communicate effectively with your child’s school regarding life-threatening allergies remains a challenge for many parents. In addition to the school nurse and classroom teacher, there are coaches, after school activity leaders, bus drivers and substitute teachers who must be informed on what to do in an anaphylaxis emergency. Instructions from doctors range from information on an annual school physical form to specific orders and action plans. Even then nurses are often left guessing if the allergy is mild with a slight rash resulting—or is life-threatening.

The Allergy and Asthma Network developed an excellent form to give to all school and summer camp personnel called an Anaphylaxis Action Plan. (See below.) It clearly states that epinephrine should be administered FIRST for any signs of a severe allergic reaction. Your Allergy Advocacy Association became aware of this form and others like it at a recent conference and decided to ask school nurses whether a form such as this is ever used, and if not, how do they learn about a child’s allergies and what to do in an emergency. We were concerned to find out that many pediatricians as well as allergists are indicating that Benadryl be given first, even when signs of anaphylaxis are present.

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Now Is the Time for Generic Epinephrine in New York State

If you carry an Epi-Pen, you are likely very much aware of the worldwide shortage of epinephrine since November of 2017. The price has also been skyrocketing. The upside is that this has brought more competition into the marketplace, as well as an effort to pass legislation permitting a generic to be substituted by a pharmacist whenever a patient is prescribed a brand name EAI device. Unless the doctor notes the prescription must be “dispensed as written,” a generic could be easily dispensed as long as it is the same dosage and strength and contains the same active ingredients. Read here about current efforts to get this legislation passed and other alternatives to the Mylan Epi-Pen.

Now Is the Time for Generic Epinephrine in New York State

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February 14th, 2019
By Jon Terry

Greetings. Concerning the New York State legislature and the 2019 session, recent developments have encouraged the Allergy Advocacy Association in our ongoing efforts to improve access to life-saving epinephrine for all individuals with life-threatening allergies. Those developments include substitution of generic drugs for brand-name medications. If new laws are enacted encouraging the use of generics by patients and consumers, lives will almost certainly be saved.

Up to 15 million Americans have food allergies, according to Food Allergy Research and Education (FARE), including about 5.9 million children under age 18, or 1 in 13 children. Many others are allergic to medication, latex, insect stings, or other triggers that can cause a sudden, potentially life-threatening reaction called anaphylaxis. Prompt administration of epinephrine is essential in an anaphylaxis emergency. 

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Where Have All the Epi-Pens™ Gone?

The current shortage of Mylan Epi-PensTM that has been going on for over a year is certainly very scary. This in-depth article describes the current status and provides valuable information on alternatives that are available NOW. For example, many allergists are prescribing the compact Kaléo’s Auvi-Q auto-injectors, which can be ordered via a direct delivery program and are also stocked at Walgreens pharmacies. So don’t rely on expired Epi-PensTM or just carry around one pen. And don’t go without!

Where have all the Epi-Pens gone?/Image credit: Allergy Advocacy Association

Epinephrine Auto-injector Device Shortage Update

Edited by Jon Terry
January 10th, 2019

This article is a summary of the current world-wide epinephrine auto-injector device shortage crisis. All the material utilized was obtained from news sources readily available on the World Wide Web.

Children with life-threatening allergies, and their parents, remain in a state of anxiety as an international shortage of life-saving medication continues. Epi-PensTM, the leading brand of epinephrine autoinjectors used to treat anaphylaxis, have been in short supply since November 2017. The product, which administers epinephrine intramuscularly, is simple enough to be used by parents, teachers, or friends at the first sign of anaphylaxis.

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The Holiday Gratitude List for our Association

As we wind up yet another year, it’s the perfect time to sit back and reflect on all that has been accomplished in 2018. But of course nothing would have been possible without the hard work and support we receive every day from so many in our community. Here’s our founder Jon Terry’s list of people and organizations that have been especially helpful this past year in reaching our ongoing vision of “Not another life lost to anaphylaxis - not another life lost ANY life-threatening allergies!”

The Holiday Gratitude List for our Association

SeasonsGreetings JonTerryA3 Staff 361x241
Photo Credit — Kristen Zale

By Jon Terry
December 14th, 2018

Happy Holidays! I sincerely hope all our readers have had a great year and are looking forward to 2019. At this time of year it is a regular occurrence for individuals and organizations to offer up gratitude lists of various sorts. Most lists recount events from the past year that were particularly hopeful or meaningful. That is pretty much what I want to share with all the supporters and affiliates of the Allergy Advocacy Association. I firmly believe that we do have a lot to feel grateful about. Please see my “thank you” list below.

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Allergy Advocacy Association Wins 2018 FARE Vision Award

We don’t do all our work to help prevent deaths from anaphylaxis just to win awards, but it’s certainly nice to be recognized. We are pleased to announce that our founder, Jon Terry, has won the prestigious Vision Award from FARE, the Food Allergies Research and Education organization. The award is given in appreciation for all the Allergy Advocacy Association’s efforts to pass legislation involving the stocking of epinephrine in schools, providing day care guidelines for food allergy management, and working at food allergy awareness days for legislators in Albany. You can read all the accolades here:

Allergy Advocacy Association Wins 2018 FARE Vision Award

FARE 2017 Vision Awards Display

By Suzanne Driscoll
October 17th, 2018

The Allergy Advocacy Association has won an important honor from Food Allergies Research and Education (FARE), a nationwide non-profit supporting families with life-threatening allergies. Jon Terry, the association's founder, has been awarded the FARE Vision Outstanding Advocacy Impact Award for 2018. (In 2015 our association was also awarded an important advocacy award from the Allergy and Asthma Network.)

The FARE Vision Awards recognize individuals and entities who support FARE in its mission to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments.

The Outstanding Advocacy Impact Award is presented to an individual or group of advocates who, through significant public action, have impacted policymakers and legislative efforts to improve access and quality of life for the food allergy community.

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Save the Date! First Annual Rochester Community Allergy Action Awards Gala!

gala newsletterRochester
Allergy Action Awards

Save the date! We are excited to announce our First Annual Fundraising Gala honoring those in our community whose contribution to research and management of allergies has been invaluable.

It will be held Thursday, November 15 from 6-9 p.m. at ARTISANworks on Blossom Road in Rochester. Read here to find out who the first well-deserved recipients of the awards will be.

We could really use your help to find sponsors for the event and items for a silent auction. Anything large or small would be most appreciated. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. to consider sponsoring or share your ideas. We sincerely thank you and will look forward to seeing you on November 15! 

Dr. John J. Condemi

We are pleased to honor Dr. Condemi with the first John J. Condemi Award for his research in anaphylaxis and working with the advocacy communities in the Rochester area.

Food Allergy Coping Teaching Supporting (FACTS)

The first annual Ruth T. Cornell Award will be given to the Food Allergy Coping Teaching Supporting network in recognition of its long term community impact in supporting families dealing with allergies.

 

 

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