Articles for Advocacy
Announcing our Albany Allergy Awareness Event
We have had much success in the past with our Food Allergy & Anaphylaxis Awareness Days in Albany, and another one is scheduled for May 3. We set up a table in the concourse entrance to the Legislative Office Building and speak to every legislator that walks by. When we have families join us it adds much validity to our cause as it hits home how allergies can affect anyone’s everyday life. Below are some of the legislative initiatives we are supporting this year. Call or write if you would like to join us!
By Jon Terry
March 14th, 2017
Greetings from Jon Terry, the founder of the Allergy Advocacy Association. Concerning anaphylaxis, life-threatening allergies and epinephrine, important legislation is again being proposed during the current session of the New York State legislature. Under consideration are new laws for anaphylaxis emergency school teacher training; restrictions upon pharmaceutical pricing policies and protecting families with food allergies when they dine out at restaurants or fast-food service vendors.Read more ...
The Viaskin Peanut Patch: Will It Help Prevent Anaphylaxis?
Local allergist Dr. Shahzad Mustafa has been closely monitoring clinical trials for a new peanut patch that would help decrease the risk of an allergic reaction after accidental ingestion. Worn on the back or the inside of the upper arm, there were very few side effects in a recent study except for mild skin irritations. After 1-2 years of using the patch, close to 50% of the 74 participants saw a 50% improvement in peanut tolerance. DBV Technologies hopes to have the product approved by the Food and Drug Administration and marketed by 2018.
The Viaskin peanut patch: Will it help prevent Anaphylaxis?
By Janet Goldman
February 11th, 2017
DBV Technologies has been developing the Viaskin Peanut Patch, a new method for preventing anaphylaxis. If used appropriately, the patch can increase tolerance to peanuts. The patch helps peanut allergic individuals who accidentally ingest or are accidentally exposed to peanut protein. Through immunotherapy, the patch can help prevent symptoms from an accidental exposure. However, even with a patch, users should still always carry epinephrine and strictly avoid peanuts.Read more ...
Open Letter to Malia Obama
The deaths of young adults from anaphylaxis is a major concern for our association. We need national leadership on this issue. Who better than one of the most prominent public figures with peanut allergy in that age group. That is why Jon Terry has asked Malia Obama for help.
An Open Letter to Malia Obama
By Jon Terry
January 13, 2017
Dear Ms. Obama;
Greetings. I sincerely hope you and your family are doing great and looking forward to a happy and prosperous new year. And also that you are successfully managing your health particularly your allergy to peanuts.Read more ...
Big Jon's Holiday Gratitude List
As we wind up yet another year, it’s the perfect time to sit back and reflect on all that has been accomplished in 2016. 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!”
Big Jon's Allergy Advocacy Association Holiday Gratitude List
By Jon Terry
December 7, 2016
Happy Holidays! I sincerely hope all of our readers have had a great year and are looking forward to 2017. At this particular 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.Read more ...
Many Families In The Dark About Cheaper EpiPen Alternative
Did you know there is a less expensive alternative to Mylan’s EpiPen? A generic epinephrine auto injector of another brand called the Adrenaclick, it has been on the market since 2013. The cash price is as much as $430 cheaper than the EpiPen. But it’s important that your doctor write the prescription in a certain way or the pharmacist won’t be able to fill it with the less expensive brand. The prescription should say “‘the generic epinephrine auto injector,” not “EpiPen or generic equivalent.”
By Dr. Mallika Marshall
November 16th, 2016
BOSTON – Diagnosed with a severe peanut allergy, one wrong bite could be deadly for 10-year-old Dylan Frazier of Duxbury. That’s why his mom, Kristen, keeps EpiPens everywhere. “We keep one in the cafeteria. We also keep one in the classroom and in the sports bag,” she said.
The Fraziers’ insurance doesn’t cover the cost of all those extras, so they end up with hundreds of dollars in out-of-pocket costs just have that peace of mind.Read more ...
Remembering Ruthie With Epi Everywhere
In memory of Jon Terry’s sister Ruthie, we are launching our first major fundraising campaign in order to help protect those with life-threatening allergies. We’ve already seen results in saving a life thanks to a donation of epi-pens we made to the local Boy Scouts Association last summer. Will you help us continue our important work?
Remembering Ruthie With Epi Everywhere
By Jon Terry & Suzanne Driscoll
October 14th, 2016
As many of you probably know, my sister Ruthie Cornell died of anaphylaxis as a result of a bee sting seven years ago. Ruthie was a life-long, avid gardener, but she didn’t know she was allergic to bee stings. Had epinephrine been on hand via an epi-auto-injector (EAI), she would still be alive. Ruthie would have been 60 years old on May 18 of this year and I miss her every day.
In her honor and to help save others from dying from undiagnosed allergies, I started the Allergy Advocacy Association where we have advocated for epinephrine to be available everywhere. We accomplish this with legislative activities, programs to educate the public about EAIs (using them and keeping them on hand), and providing EAIs to organizations in need. Today I would like to ask your assistance in furthering our goals in these important initiatives.Read more ...
Buying Epi-Pens™ in Canada: What You Need to Know
With the skyrocketing costs of epi-pens, many people are considering ordering them from pharmacies in Canada just like some do for other prescriptions. One mother obtained them at half the cost compared to prices in the U.S. This article also provides some helpful Websites so you can check to make sure the pharmacy you are ordering from is licensed. The question remains, why can the Canadian government negotiate price caps or lower prices with the manufacturers while in the U.S. drug companies set whatever price they want?
Families Search for Lower-Cost Alternatives North of the Border
By Kristen Stewart
October 12th, 2016
We’ve all heard the numbers when it comes to the cost of the Epi-PenTM. Perhaps the only thing more shocking than the price jump of more than $500 in just eight years is the fact families are expected to pay over $600 for this life-saving medicine.Read more ...
NYS Governor signs Emergency Allergy Treatment Act!
On September 29th, New York State Governor Andrew Cuomo signed the Emergency Allergy Treatment Act into law. Many thanks to Tom Abinanti (NYS Assembly-D) and Kemp Hannon (NYS Senate-R) for the leadership in getting this important piece of legislation passed.
NYS Governer signs Emergency Allergy Treatment Act!
By Jon Terry
October 4, 2016
The Emergency Allergy Treatment Act (EATA, S6800 Hannon, A9357 Abinanti) authorizes (not mandate) public venues such as restaurants, youth organizations, sports leagues, theme parks, sport arenas, day care and educational facilities to stock and administer epinephrine auto-injector (EAI) devices in an emergency to individuals who appear to experience anaphylactic symptoms.Read more ...
Consumers Seeking Alternatives to Epi-Pen®
As the outrage over the price of EpiPens continues, Patricia Sabatini offers some practical alternatives such as buying them in Canada or trying a generic version of the former Adrenaclick brand. She also discusses alternatives to avoid such as going online or using a syringe and vial. Hopefully a new, lower priced generic version of the current EpiPen® will be available soon.
As consumers look for more affordable solutions to the rising price of the EpiPen, the increased cost has brought scrutiny by lawmakers and a public backlash for Mylan.
By Patricia Sabatini
September 7, 2016
The firestorm surrounding the spiraling price of Mylan’s EpiPen® is fueling interest in lower-cost alternatives to the emergency allergy treatment, including a lesser-known but similar auto-injector that has been on the market since 2013.Read more ...
Parents Want All Ambulances to Carry EpiPens
Research conducted by Food Allergy Research & Education (FARE) found that not all ambulances carry epinephrine and that EMTs often don't take the person to the hospital for further observation if they appeared to be "fine now." In light of this, FARE recommends contacting your local ambulance service to ask if epinephrine is stocked in every vehicle and that at least one EMT per ambulance be qualified to administer it. In an anaphylactic emergency, inform the 911 dispatcher to send an ambulance carrying epinephrine along with a trained EMT.
The only medication that can stop severe allergic reactions isn’t required on all emergency responder vehicles. Why is that?
By Cathy Cassata
August 5, 2016
If your child suddenly can’t breathe, most likely your instincts will move you to call 911.Read more ...
An Open Letter to NYS Governor Andrew Cuomo
The hard work of getting legislation passed to allow public venues to stock and administer epinephrine in an emergency was accomplished in June of this year. But it’s not over “till the fat lady sings,” as they say in baseball. Governor Cuomo has yet to sign the bill so our association is sending him the following letter. Please send the governor an e-mail encouraging to Please Sign EATA Now!
The Honorable Andrew M. Cuomo
Governor of New York State
Jon Terry, founder
Allergy Advocacy Association
The Emergency Allergy Treatment Act
July 7, 2016
Dear Governor Andrew Cuomo;
Greetings. The Allergy Advocacy Association respectfully requests that you please sign S6800 the Emergency Allergy Treatment Act into law immediately.Read more ...