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Articles for Advocacy

A Mother Pushes for Allergy Safety on NYS School Buses

What would happen if a child got stung by a bee or ate something he or she was allergic to on a school bus? When every minute counts during an attack of anaphylaxis, a bus driver trained to administer epinephrine could literally save a life. Fortunately, thanks to the efforts of one mother, legislation is being proposed in New York State that would allow employees of companies that provide transportation to be able to administer an epinephrine auto-injector in emergency circumstances.

Stacey Saiontz with her sons Jared and Elliott
Stacey Saiontz with her sons Jared and Elliott

A Mother Pushes for Allergy Safety on NYS School Buses

By Kristen Stewart
May 22nd, 2017

Stacey Saiontz of Chappaqua, New York does everything parents of extremely allergic children do. She brings her son Jared’s food to restaurants and friends’ homes. She wipes down everything from airplane seats and arm rests to playground equipment. And of course she carries Benadryl and an epinephrine auto-injector (EAI) device.

She has also taken her fight to keep her son safe one step further—all the way to the New York state capitol.

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Allergy Advocacy Association: Albany Reset

Albany Legislature building

After much consideration about where we are as an organization and how we continue the work towards our mission, we’ve decided to forgo this year’s trip to Albany. We’ll work closely with the allergy community to better understand their challenges as they manage their allergies and how we can better support them with legislative outreach and other advocacy activities.  

Issues of anaphylaxis emergency school teacher training; restrictions upon pharmaceutical pricing policies and protecting families with food allergies in restaurants are very important to our community.  We look forward to working with the Monroe County allergy community, health care professionals and NYS representatives and their staffs to support legislation to make it easy to keep our friends and family safe during an episode of anaphylaxis, no matter where they are. This information will be used to focus our attention on the right legislation as we continue our work in Albany next year.

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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!

A3 Staff and Friends In Albany 2016

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.

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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?

Viaskin Peanut Patch

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.

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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

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.

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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

Xmas Saying From Da Grinch 2016

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.

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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.”

Generic Epinephrine Injector USP packages

Many Families In The Dark About Cheaper EpiPen Alternative

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.

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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

Ruthie Cornell

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.

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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?

Parra Kids Between US and Canadian Flags
L to R: Dominic, Adam, Cameron and Joshua Parra.

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.

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NYS Governor signs Emergency Allergy Treatment Act!

Tom Abinanti (NYS Assembly) Andrew Cuomo (NYS Governor and Kemp Hannon (NYS Sentate 

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.

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Consumers Seeking Alternatives to Epi-Pen®

EpiPen 2-pack
Rich Pedroncelli/Associated Press

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.

Consumers Seeking Alternatives to Epi-Pen®

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.

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