Articles for Advocacy

Save the Date! First Annual Rochester Community Allergy Action Awards Gala!

gala newsletterRochester
Allergy Action Awards

Save the date! We are excited to announce our First Annual Fundraising Gala honoring those in our community whose contribution to research and management of allergies has been invaluable.

It will be held Thursday, November 15 from 6-9 p.m. at ARTISANworks on Blossom Road in Rochester. Read here to find out who the first well-deserved recipients of the awards will be.

We could really use your help to find sponsors for the event and items for a silent auction. Anything large or small would be most appreciated. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. to consider sponsoring or share your ideas. We sincerely thank you and will look forward to seeing you on November 15! 

Dr. John J. Condemi

We are pleased to honor Dr. Condemi with the first John J. Condemi Award for his research in anaphylaxis and working with the advocacy communities in the Rochester area.

Food Allergy Coping Teaching Supporting (FACTS)

The first annual Ruth T. Cornell Award will be given to the Food Allergy Coping Teaching Supporting network in recognition of its long term community impact in supporting families dealing with allergies.

 

Patience Plus Persistence Equals Progress!

Occasionally it’s nice to sit back and take stock of all that your association has accomplished in the recent past—and all that still needs to be worked on. Our founder Jon Terry describes what your association has been working on since 2011 but be assured we do not plan to rest on our laurels. We plan to expand our education and funding efforts with the Epi Near You New York program, and continue our work to support lower priced epinephrine auto-injectors. You can read the full article here.

Patience + Persistence = Progress!

Jon Terry holding photo of his sister, Ruth Cornell

Update on Our Latest Accomplishments and Plans for the Future

By Jon Terry
August 8th, 2018

As the summer moves quickly towards fall, September 23rd is fast approaching. On that day it will be nine years since my sister Ruth T. Cornell died from a fatal attack of anaphylaxis after being stung by a honey bee. Keeping that in mind, this seems like a good time to share with all our affiliates and supporters some ideas of where our association is headed. To do that I would like to list a few milestones we have already passed in 2018.

  • New York State approval of Epi Near You New York training program
  • Epi Entity Stocking Gift provided to Saint John Fisher College
  • USAnaphylaxis Summit Meeting in Nashville
  • Epi Entity Stocking Gift provided to Seneca Waters Council Boy Scouts of America
  • Food Allergy Awareness Day at the State Capitol in Albany
  • Epi Entity Stocking Gift provided to Girl Scouts of America Western NY
  • Pharmacists Society of the State of NY convention in Buffalo
  • Educational Gift awarded to U-R Condemi Rosenfeld Scholarship Fund
  • Educational Gift awarded FARE Hero's Walk in Buffalo
  • Food Allergy Awareness Day at Frontier Field in Rochester
Read more ...

Understanding Pharmacy Benefit Managers and the Costs of Epinephrine

Four Epi Injectors From Various Manufacturers

EAIs vs. PBMs

If you are wondering why the cost of epinephrine and other drugs has been increasing lately, read about the role Pharmacy Benefit Managers (PBMs) play. While they are supposed to be acting as intermediaries between pharmacists and insurance companies, the way they are compensated can end up costing the consumer a lot more money. This article addresses gag clauses where the pharmacist is not allowed to suggest lower cost alternatives, rebates that give PBMs 40 to 50 percent of a medicine’s list price and spread pricing where the PBM charges an employer a higher price for a drug. Please read this important article here on how you can avoid gag clauses and save money when you go to fill your next prescription.

Understanding Pharmacy Benefit Managers and the Costs of Epinephrine

By Jon Terry
July 15th, 2018

Why has the excessive cost of epinephrine auto-injector (EAIs) devices become such a prominent public health issue? Along with the drug manufacturers and insurance companies, the news media has recently called attention to the role played by pharmacy benefit managers (PBMs) for increasing our medication expenses. According to the Council of Economic Advisors, “Pricing in the pharmaceutical drug market suffers from high market concentration in the pharmaceutical distribution system and a lack of transparency.” To help better understand this relationship, the Allergy Advocacy Association is sharing an overview of selected available information and opinions on this very complex subject.

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Future of New York State Generic Epi Bill Uncertain

Future of New York State Generic Epi Bill Uncertain

Sometimes it takes a while for a few of our New York State legislators to “get it” when it comes to voting for issues related to allergies and how to better protect the public. But we do have many strong supporters who never give up trying. Senator Kemp Hannon and Assemblyman Tom Abinanti proposed a bill that would authorize a pharmacist to substitute an alternate epinephrine auto-injector (EAI) device containing the same active ingredients, under certain conditions. The bill got stuck in the assembly higher education committee, saying it was "held for consideration.” Don’t worry, we never give up either, and it would be wonderful if you could contact your legislator to voice your support.

Left to R: Jon Terry, Jennifer Jobrack, Senator Kemp Hannon, Kirsi Jarvinen-Seppo MD, AM Tom Abinanti.
L-R: Jon Terry, Jennifer Jobrack, Senator Kemp Hannon, Kirsi Jarvinen-Seppo MD, AM Tom Abinanti.

Progress of Hannon-Abinanti bill has been stopped for now

By Jon Terry
June 15th, 2018

Greetings. Since our Food Allergy Awareness Day ended on May 16th, important developments have taken place in Albany. The Allergy Advocacy Association's campaign to obtain passage for a new generic epinephrine law has reached a disappointing but not surprising conclusion for this year.

Concerning New York State bill A7219/S289 sponsored by Senator Kemp Hannon and Assembly Member Tom Abinanti, their legislation has been effectively halted. NYS Assembly Member Deborah Glick, chairman of the assembly higher education committee where A7219 was being reviewed, has "held the bill for consideration." One reason for the hold may be opposition against the bill from certain companies in the pharmaceutical industry.

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Announcing Epi Near You New York

Help us spread the word about our Epi Near You New York program. Recently approved by New York State, we will provide training to any restaurant, summer camp or daycare center on when and how to administer epinephrine. Plus, we will give them a non-patient-specific (NPS) prescription, which can be filled at any pharmacy in New York. And for 501(c)(3) organizations, the Allergy Advocacy Association will provide a payment voucher for an epinephrine auto injector, at no cost to the owner. Help us help you save lives!

 

Allergy Advocacy Association Logo

By Staff
May 14, 2018

The Allergy Advocacy Association is very pleased to introduce Epi Near You New York, an educational program to help Monroe County’s small businesses keep their customers safe. This program will enable businesses to stock and administer epinephrine to those who are not carrying their Epinephrine Auto-Injector (EAI) device or weren’t aware of their allergy, leaving them at risk for an attack of anaphylaxis.

Read more ...

A Warning Bell will Ring in my Head!

"A Warning Bell will Ring in my Head!"

Trevor Leinenbach is doing an excellent job in managing his allergy to milk and can serve as a great example to teens everywhere. Thanks to the efforts of his mother Joy, they helped to start the support group, Food Allergies Coping Teaching and Supporting (FACTS) in Fairport, NY. Read here about the strategies Trevor uses to avoid anaphylaxis attacks, and the great support he receives from his college as well as friends and family.

Trevor Leinenbach discusses living with food allergies and asthma

Joy and Trevor Leinenbach; March, 2018
Joy and Trevor Leinenbach; March, 2018.

By Jon Terry
April 12th, 2018

Trevor Leinenbach has lived his entire life with life-threatening food allergies and asthma. He and his family, particularly his mother Joy, have spent many years educating themselves and others about the dangers of anaphylaxis. He recognizes the importance of being a role model for other young men facing many of the same issues he deals with day after day. Now attending Clarkson University in the northern most area of New York State, Trevor recently shared a few of his life experiences at an allergy support group. This support group, Food Allergies Coping Teaching and Supporting (FACTS), has bi-monthly meetings in Fairport, NY. Partly initiated by Joy, FACTS has helped many parents and kids at risk for anaphylaxis. Here are a few excerpts from my meeting notes. 

Read more ...

Should Pharmacists in NYS write Rx for Epinephrine?

Many of the initiatives your Allergy Advocacy Association was successful in implementing were from legislation that had been passed in other states. Our next goal is an idea from the state of Idaho where pharmacists are now allowed to write prescriptions for epinephrine, thanks to the efforts of a pharmacist whose son has food allergies. You can read the full article here.

Should Pharmacists in NYS write Rx for Epinephrine?

>Starla and Mitchell Higdon at the Idaho state capitol
Starla and Mitchell Higdon at the Idaho state capitol.

By Jon Terry
March 12, 2018

After founding the Allergy Advocacy Association eight years ago, I knew I would have to imitate the already existing ideas and creations from other people’s work. Why did I decide to do this? Because I was determined to do whatever it takes to raise awareness of the dangers of anaphylaxis. To become an effective public advocate, I would have to learn about new things but also copy many things that already existed. There was no good reason for our association to re-invent the wheel, so to speak. And when it came to advocate for new legislation in my home state of New York, I searched for successful laws already enacted in other states. If it “plays in Peoria,” why not try it in Albany as well? Sure, some folks might accuse me of stealing promising ideas from others. But I prefer to think of the process not as larceny, but as flattery instead.

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Local College Implements New York’s Emergency Allergy Treatment Act

St. John Fisher College can serve as an example to colleges everywhere in being proactive to protect students with severe allergies. They are stocking epinephrine throughout the campus and conducting training sessions for security, health care personnel and resident assistants. As the college had three incidences of anaphylaxis last year alone, we are very proud to help in this important endeavor.

SJF College fire and safety officer Al Camp and A3 founder Jon Terry
SJF College fire and safety officer Al Camp and A3 founder Jon Terry

Local College Implements New York’s Emergency Allergy Treatment Act

By Janet Goldman
February 10th, 2018

St. John Fisher College is becoming a role model for local colleges and other public entities in western New York. As authorized by New York’s Emergency Allergy Treatment Act (EATA), the College is stocking epinephrine, making it available for students, staff and visitors as needed. With a non-specific epinephrine prescription, specifically trained College staff will be able to administer epinephrine to anyone suffering from anaphylaxis.

Read more ...

Wisconsin Governor Scott Walker Signs Dillon's Law Bill

After a prolonged struggle Wisconsin residents Angel and George Mueller succeeded in their tireless efforts to enact legislation allowing trained and certified individuals to carry and administer epinephrine in case of an attack of anaphylaxis. Be Strong and BRRAAPP ON! Read the article Epinephrine commonly administered by unlicensed school staff.

Gov. Scott Walker Signs Dillons Law
Gov. Scott Walker signs the bill for Dillon's Law at Mishicot High School. (Photo: Josh Clark/USA TODAY NETWORK-Wisconsin)

Wisconsin Governor Scott Walker Signs Dillon's Law Bill

By Alisa M. Schafer
Dec. 11th, 2017
MISHICOT, WI

“Dillon’s Law will save lives.”

Gov. Scott Walker said that was the most important sentiment during a bill-signing ceremony Monday honoring Dillon Mueller, who died at age 18 of an allergic reaction to a bee sting.

Walker signed Dillon’s Law on Monday at Mishicot High School, the school Dillon graduated from shortly before his death on Oct. 4, 2014.

“What a powerful way to honor such a remarkable young man … someone who had a zeal for life in every way,” Walker said.

Read more ...

USAnaphylaxis Summit Report 2017

Our founder, Jon Terry, attended the USAnaphylaxis Summit held in Washington, DC, sponsored by the Allergy and Asthma Network. He came away with some great information to share from leading experts in the field who identified best practices and helped develop call-to-action strategies. Jon believes some great strides are being made in anaphylaxis prevention.

USAnaphylaxis Summit Report 2017

US Anaphylaxis Summit Attendees

By Jon Terry
November 1st, 2017

This past fall I attended the USAnaphylaxis Summit meeting at the National Harbor outside of Washington, DC. The event was sponsored by the Allergy and Asthma Network, for over thirty years the leading national nonprofit organization dedicated to ending needless death and suffering due to asthma, allergies and related conditions. Five years ago, AAN invited a small group of stakeholders to Washington, DC to participate in the first USAnaphylaxis Summit and hear from leading experts, identify best practices and develop call-to-action strategies. This year the Network gathered experts in allergies, anaphylaxis and patient care to collaborate and author a journal article based on the Summit’s presentations.

Read more ...

Epinephrine Commonly Administered by Unlicensed School Staff

Dr. Michael Pistiner

A study by Dr. Michael Pistiner of MassGeneral Hospital for Children found that epinephrine was often administered in schools by nonmedical staff, and sometimes to students with no known allergy. This reinforces the importance of legislation such as the Nurse Authorized Stock Epinephrine laws and the training of ALL school personnel. This is especially important for schools that do not have full-time nurses.

Epinephrine Commonly Administered by Unlicensed School Staff

By Katherine Bortz
October 20, 2017

CHICAGO —  As many as one in five anaphylactic events among children without known allergies are treated with epinephrine administered by an unlicensed school nurse or staff member, according to a recent presentation at the American Academy of Pediatrics 2017 National Conference & Exhibition.

Read more ...

 

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