E-Greetings from the Allergy Advocacy Association

May, 2019

As spring arrives oh so sloooowly, we are on the fast track to accomplishing much this season. We’ve been very busy gearing up for our Food Allergy Awareness Day in Albany on May 15 and would love to have you join us. Carpools can be arranged, so just give Jon Terry a call at 585-319-6848 for more details.

Food Allergy Awareness Day!
May 15, 2019
9 am to 4 pm
NYS Capitol
Legislative Office Building (Concourse Level Entrance)
Albany, New York

In this month’s issue we are sad to report that the shortage of brand name Epi-PensTM continues. But rather than use your expired pens, be sure to consult with your doctor about the possibility of getting a prescription for a different brand of epinephrine. Those are in plentiful supply as described in the articles below.

So think SUN, and we will be sure to give you a full report of our Albany trip next month.

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.

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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

ENYNY 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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Study Favoring Avoidance Over Food Allergy OIT Ignites Controversy

Just as our excitement was building for peanut oral immunotherapy (OIT), a recent study cautions that there may be more harm than good, with an increase of severe allergic reaction three times greater than if a person simply continued to practice avoidance. Some parents of children who have had success with OIT strongly disagree with these findings, and hope the FDA continues with its approval process. They say any reactions are happening more in a controlled environment at home rather than in a public place such as a restaurant in an emergency situation.

Study Favoring Avoidance Over Food Allergy OIT Ignites Controversy

Dr. Derek Chu
Dr. Derek Chu photo: McMaster U.

By: Gwen Smith
April 28, 2019

A systematic review of peanut oral immunotherapy that compared 12 controlled studies has brought a longstanding “pro or con” debate over whether OIT is ready for widespread use spilling out into the news media.

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Food Allergy Sufferers often Served a Side of Skepticism Alongside their Struggle

There is a big difference between a food “intolerance” and a food allergy, and overuse of the word allergy can cause many to not take the threat seriously. Here’s a story of one teenager who had to stand up in front of her entire middle school and explain the dangers of her peanut allergy. She has learned to advocate for her own safety, and encourages all skeptics to take people living with severe allergies very seriously. Even today there are those in the medical community and the media who believe that the fear around allergies is alarmist and can be driven by profit-seeking and other motives. They should “walk in another man’s moccasins” for a day and then see what it is like to live with a life-threatening allergy.

Fresh veggies, meats, crackers and dip

Food Allergy Sufferers often Served a Side of Skepticism Alongside their Struggle

By Lavanya Ramanathan The Washington Post
Apr 23, 2019

Patricia “Trece” Hopp rose and took a deep breath at the start of middle school with something to say. She’d need her classmates’ understanding, she nervously explained, and perhaps their help.

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