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.
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:
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."
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!
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.
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
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.