Articles for Advocacy

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

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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.

 

Patience Plus Persistence Equals Progress!

Occasionally it’s nice to sit back and take stock of all that your association has accomplished in the recent past—and all that still needs to be worked on. Our founder Jon Terry describes what your association has been working on since 2011 but be assured we do not plan to rest on our laurels. We plan to expand our education and funding efforts with the Epi Near You New York program, and continue our work to support lower priced epinephrine auto-injectors. You can read the full article here.

Patience + Persistence = Progress!

Jon Terry holding photo of his sister, Ruth Cornell

Update on Our Latest Accomplishments and Plans for the Future

By Jon Terry
August 8th, 2018

As the summer moves quickly towards fall, September 23rd is fast approaching. On that day it will be nine years since my sister Ruth T. Cornell died from a fatal attack of anaphylaxis after being stung by a honey bee. Keeping that in mind, this seems like a good time to share with all our affiliates and supporters some ideas of where our association is headed. To do that I would like to list a few milestones we have already passed in 2018.

  • New York State approval of Epi Near You New York training program
  • Epi Entity Stocking Gift provided to Saint John Fisher College
  • USAnaphylaxis Summit Meeting in Nashville
  • Epi Entity Stocking Gift provided to Seneca Waters Council Boy Scouts of America
  • Food Allergy Awareness Day at the State Capitol in Albany
  • Epi Entity Stocking Gift provided to Girl Scouts of America Western NY
  • Pharmacists Society of the State of NY convention in Buffalo
  • Educational Gift awarded to U-R Condemi Rosenfeld Scholarship Fund
  • Educational Gift awarded FARE Hero's Walk in Buffalo
  • Food Allergy Awareness Day at Frontier Field in Rochester
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Understanding Pharmacy Benefit Managers and the Costs of Epinephrine

Four Epi Injectors From Various Manufacturers

EAIs vs. PBMs

If you are wondering why the cost of epinephrine and other drugs has been increasing lately, read about the role Pharmacy Benefit Managers (PBMs) play. While they are supposed to be acting as intermediaries between pharmacists and insurance companies, the way they are compensated can end up costing the consumer a lot more money. This article addresses gag clauses where the pharmacist is not allowed to suggest lower cost alternatives, rebates that give PBMs 40 to 50 percent of a medicine’s list price and spread pricing where the PBM charges an employer a higher price for a drug. Please read this important article here on how you can avoid gag clauses and save money when you go to fill your next prescription.

Understanding Pharmacy Benefit Managers and the Costs of Epinephrine

By Jon Terry
July 15th, 2018

Why has the excessive cost of epinephrine auto-injector (EAIs) devices become such a prominent public health issue? Along with the drug manufacturers and insurance companies, the news media has recently called attention to the role played by pharmacy benefit managers (PBMs) for increasing our medication expenses. According to the Council of Economic Advisors, “Pricing in the pharmaceutical drug market suffers from high market concentration in the pharmaceutical distribution system and a lack of transparency.” To help better understand this relationship, the Allergy Advocacy Association is sharing an overview of selected available information and opinions on this very complex subject.

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Future of New York State Generic Epi Bill Uncertain

Future of New York State Generic Epi Bill Uncertain

Sometimes it takes a while for a few of our New York State legislators to “get it” when it comes to voting for issues related to allergies and how to better protect the public. But we do have many strong supporters who never give up trying. Senator Kemp Hannon and Assemblyman Tom Abinanti proposed a bill that would authorize a pharmacist to substitute an alternate epinephrine auto-injector (EAI) device containing the same active ingredients, under certain conditions. The bill got stuck in the assembly higher education committee, saying it was "held for consideration.” Don’t worry, we never give up either, and it would be wonderful if you could contact your legislator to voice your support.

Left to R: Jon Terry, Jennifer Jobrack, Senator Kemp Hannon, Kirsi Jarvinen-Seppo MD, AM Tom Abinanti.
L-R: Jon Terry, Jennifer Jobrack, Senator Kemp Hannon, Kirsi Jarvinen-Seppo MD, AM Tom Abinanti.

Progress of Hannon-Abinanti bill has been stopped for now

By Jon Terry
June 15th, 2018

Greetings. Since our Food Allergy Awareness Day ended on May 16th, important developments have taken place in Albany. The Allergy Advocacy Association's campaign to obtain passage for a new generic epinephrine law has reached a disappointing but not surprising conclusion for this year.

Concerning New York State bill A7219/S289 sponsored by Senator Kemp Hannon and Assembly Member Tom Abinanti, their legislation has been effectively halted. NYS Assembly Member Deborah Glick, chairman of the assembly higher education committee where A7219 was being reviewed, has "held the bill for consideration." One reason for the hold may be opposition against the bill from certain companies in the pharmaceutical industry.

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Announcing Epi Near You New York

Help us spread the word about our Epi Near You New York program. Recently approved by New York State, we will provide training to any restaurant, summer camp or daycare center on when and how to administer epinephrine. Plus, we will give them a non-patient-specific (NPS) prescription, which can be filled at any pharmacy in New York. And for 501(c)(3) organizations, the Allergy Advocacy Association will provide a payment voucher for an epinephrine auto injector, at no cost to the owner. Help us help you save lives!

 

Allergy Advocacy Association Logo

By Staff
May 14, 2018

The Allergy Advocacy Association is very pleased to introduce Epi Near You New York, an educational program to help Monroe County’s small businesses keep their customers safe. This program will enable businesses to stock and administer epinephrine to those who are not carrying their Epinephrine Auto-Injector (EAI) device or weren’t aware of their allergy, leaving them at risk for an attack of anaphylaxis.

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