E-Greetings from the Allergy Advocacy Association

March, 2019

May the luck of the Irish be with you the entire month long! On April 1, 2019, your Allergy Advocacy Association will be presenting an Epi Near You NY training seminar at the University of Rochester’s School of Nursing. Dr. Kirsi Jarvinen-Seppo, Chief of Pediatric Allergy and Immunology at the UR Medical Center, will be presenting. We had over 100 people attend our last seminar at St. John Fisher, so be sure to RSVP soon. Admission is free and you will have an opportunity to ask questions from one of Rochester’s leading experts on severe allergies.

Epi Near You New York training seminar
University of Rochester
School of Nursing
Auditorium (1-304)
255 Crittenden Boulevard
Rochester, NY  14620
Monday, April 1st, 2019 7pm
FREE admission!

RSVP to This email address is being protected from spambots. You need JavaScript enabled to view it.
or call 585-255-0384

Also we will be making our annual trek to Albany for a Food Allergy Awareness Day. It’s a great opportunity to speak with our state legislators in person about upcoming legislation, (see "EAIs Still in Short Supply" below) and all are welcome to join us.

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

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.

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Your Environment Is Cleaner Your Immune System Has Never Been So Unprepared

Should kids pick their nose? Eat dirt? Avoid antibacterial soap? A dermatologist in Denver who treats people with allergies and autoimmune disorders says definitely “yes!” Believing our world is becoming much too sanitized, Dr. Meg Lemon advises that our immune system is not getting a good workout, and we are therefore more susceptible to allergens. Research going back as far as 1872 agrees with the hypothesis that when the immune system is not properly trained it overreacts and develops allergies, or in other words, chronic immune system attacks.

Your Environment Is Cleaner
Your Immune System Has Never Been So Unprepared

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A century ago, British scientists suggested a link between increased hygiene and allergic conditions — the first hint that our immune systems are becoming improperly “trained.”
Credit Mike McQuade

By Matt Richtel, March 12, 2019
Excerpted from “An Elegant Defense: The Extraordinary New Science of the Immune System,” published on Tuesday by William Morrow.

Should you pick your nose?

Don’t laugh. Scientifically, it’s an interesting question.

Should your children pick their noses? Should your children eat dirt? Maybe: Your body needs to know what immune challenges lurk in the immediate environment.

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Could Your Mindset Affect How Well A Treatment Works?

Now that more and more parents are willing to try peanut patches and powders in order to build up an immunity to life-threatening allergies in their children, there are fears about possible side effects. Researchers are finding that when they frame the message that unpleasant side effects are a positive signal that the treatment is working, patients are less likely to drop out of studies and will continue on with the daily regimens.

Could Your Mindset Affect How Well A Treatment Works?

Mindset for Allergy Treatment drawing
Chris Madde/Getty Images

By Esther Landhuis
March 1, 2019

Anxiety about side effects can keep people from starting or sticking to drug regimens or medical procedures. A group of researchers at Stanford University wanted to find out whether a simple mindset shift could help patients tolerate an uncomfortable treatment. They learned that when physicians make the effort to reframe potentially unpleasant symptoms in a positive light, it helped patients to stay calm and persevere.

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