It was great to have the chance to meet in person with our legislators at our Food Allergy Awareness Day, and we are gratified for all their support of our efforts. However, we remain concerned about recent actions by large pharmaceutical companies who produce epinephrine and its generics. There are reports of possible price fixing, intentional shortages, and expiration dates that are much too brief. Read below about our specific concerns and what you can do to help.
Successful Food Allergy Awareness Day Event, but the Epi Crisis Becomes More Complicated
By Jon Terry June 8th, 2019
Greetings from western New York. For the past few years, New York State lawmakers have enthusiastically sponsored Food Allergy Awareness Day at the state capitol in Albany. The Allergy Advocacy Association acted in concert with AM Thomas J. Abinanti and NYS Senator Gustavo Rivera with planning and scheduling for our event held on May 15th. We hosted more than thirty adults and children, most of them coping with life-threatening allergies each and every day. Our event featured many meetings with Senators, Assembly Members and their staffs; most lawmakers did express support for our program of action. At our exhibit booth in the Legislative Office Building, reporters for local media outlets conducted several interviews with lawmakers and visitors. In my opinion I think it was a great day! Our association firmly believes this annual event is very important for all individuals and families at risk for anaphylaxis in New York State.
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
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.
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!
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.
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
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.
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.