Articles for Advocacy

FARE & Friends Making the Case on Capitol Hill

Two days of attending presentations and advocating with our legislators in Washington, DC gave us a very positive outlook on the future of protecting our love ones who have life-threatening allergies. Read all about the topics discussed and the specific legislation we are advocating for, along with numerous photos of the 150 people of all ages who attended. Next year FARE hopes to fly in five hundred activists and advocates, so Washington will know we will not be ignored!

Members of the New York State FARE contingent at US Capitol building

Edited by Jon Terry
March 11th, 2020

Greetings. On March 3rd and 4th the Food Allergy Research Education (FARE) organization hosted the “Courage at Congress Advocacy Day to Fight Food Allergies.” Your Allergy Advocacy Association proudly participated in conference and lobbying activities.

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Study Shows High Costs and Burden of Peanut Allergy

The need for a treatment for peanut allergies becomes more apparent when a recent study showed that those living with an allergy to peanuts have almost double the annual healthcare costs for patients who didn’t have a peanut allergy. Out of 42,000 people studied, 36% of the peanut allergy patients had experienced anaphylaxis and 33% had visited an emergency department, compared to 20% of those without a peanut allergy.

Study Shows High Costs and Burden of Peanut Allergy

A pile of peanuts

By: Gwen Smith
February 6, 2020

A study of a large U.S. health insurer database reveals the high dollar and health costs for those living with peanut allergy.

Using the IBM MarketScan Commercial Claims and Encounters Database, researchers analyzed insurance claims for almost 42,000 patients with peanut allergy between January 2011 and September 2015. They found that:

-The yearly “all-cause” healthcare costs for patients who had a peanut allergy diagnostic code was $6,400 a year. That was almost double the “all-cause” annual healthcare costs ($3,500) for patients who didn’t have the peanut allergy code.

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All About Epinephrine: What It Does in a Reaction, How Long It Lasts, When It Gets Hot or Cold

Allergic Living magazine and Gina Clowes at reached out to Dr. Julie Brown, an emergency medicine physician at Seattle Children’s Hospital, for her expertise on anaphylaxis and epinephrine. In this article she answers frequently asked questions on how to know when to administer an Epi-Pen©, how it works, when to give a second dose, expiration dates, and what happens to epinephrine when subjected to significant heat or cold exposure.

All About Epinephrine: What It Does in a Reaction,
How Long It Lasts, When It Gets Hot or Cold

Dr. Julie Brown
Gina Clowes

By Allergic Living
January 9, 2020

One of the nerve-racking parts of living with severe allergies is having to make the call about if and when an allergic reaction is anaphylaxis. A shot of epinephrine can save a life but having to inject ourselves or our child with a needle is something we did not sign up for. 

However, mistakes in the critical areas of recognizing and responding to anaphylaxis can mean the difference between life and death. Plus, studies are showing that prompt administration of epinephrine can simply reduce the chance that a food allergy reaction moves from relatively mild to severe anaphylaxis.

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NYS Governor Cuomo Enacts "Elijah's Law"

Concerning successful advocacy during 2019 here in New York State, congratulations to Thomas and Dima Silvera for a successful effort honoring their son Elijah. The Silvera family is a power of example for the Allergy Advocacy Association.

Those attending Elijah’s Law ceremony in New York included: Rep. Al Taylor (blue suit), Sen. Brian Benjamin (speaking) and (right) Dina and Thomas Silvera.

Elijah’s Law Is Official, Protecting Food Allergy Kids in NY Daycares

By: Mariam Matti
September 14, 2019

Thomas and Dina Silvera held a “bittersweet” celebration on Friday, Sept. 13, in honor of Elijah’s Law becoming New York State legislation with the signature of Governor Andrew Cuomo a day earlier.

The law, the first of its kind in the United States, will require all daycare programs to implement guidelines to prevent, recognize and respond to anaphylactic reactions.

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At 30,000 Feet, Why We Can’t Count on Epinephrine Vials on an Airplane

One would think that with the frequency of peanuts being handed out on a typical airline flight, that the carriers would certainly have epinephrine on hand. But sadly this is not the case. Federal laws that would require airlines to carry EpiPens failed to pass in 2016 and Airlines for America, the carriers’ trade association, received a Federal Aviation Administration (FAA) four-year exemption from carrying drugs such as epinephrine in times of drug shortages. So there is a high probability that you could be left high and dry if you were experiencing signs of anaphylaxis while flying in an airplane. Please contact your congressman to ask for their support in passing a law requiring airlines to carry lifesaving epinephrine.

At 30,000 Feet, Why We Can’t Count on Epinephrine Vials on an Airplane


By: Lianne Mandelbaum
October 10, 2019

Back in 2016, the food allergy community had high hopes for a bipartisan Senate bill that would have required all U.S. airlines to carry epinephrine auto-injectors on every flight, and to train crews to use them. But the proposed law failed to pass.

Then in the summer of 2019, two high-profile reactions occurred on airplanes, involving stories of difficulty either accessing epinephrine or getting an additional dose of the lifesaving drug. This has given a renewed sense of urgency to lobbying to get epinephrine auto-injectors into airline emergency kits. From a few senators to physicians, a new food allergy coalition called CLEAR, proponents like the non-profit FARE and advocates like me, all of us have been urging this change.

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What’s Behind the Persistent Shortage of Lifesaving Epi-Pens©?

Big Pharma, get your act together! Since 2017, Epi-Pens© have been in short supply, causing much concern in the allergy community. Pfizer, which manufactures the product for Mylan, says their production is improving but supplies will continue to be tight. The problem began in 2017 when inspectors noticed chips in the glass cartridges and bent or broken needles. Fortunately there are now alternatives to Mylan’s Epi-Pen that you can read about in the article below. Teva, for example, reports they have a good supply, and Mylan Customer Service says they will help anyone find a pharmacy to fill their prescription. You can read all the details of this unfortunate situation below.

What’s Behind the Persistent Shortage of Lifesaving Epi-Pens©?

In this July 8, 2016, file photo, a pharmacist holds a package of Epi-Pen epinephrine auto-injectors, a Mylan product, in Sacramento, Calif. (AP Photo/Rich Pedroncelli, File)

By Bloomberg News
August 23, 2019

Mylan and Pfizer are still struggling with manufacturing issues for the EpiPen anti-allergy injector as the critical back-to-school season gets underway and a rival generic product hits the market.

Epi-Pens, which can help stop a severe or life-threatening allergic reaction, have been hard to get since at least May 2018, when the U.S. Food and Drug Administration said the device was in short supply. Former and current employees of Pfizer's Meridian Medical Technologies Inc., which makes the product for Mylan, said supply has been unsteady since at least 2017, when inspectors began noticing defects.

Pfizer spokeswoman Amy Rose said the drug maker is committed to resolving the supply problem.

"Our production output is improving," Rose said. "However, we anticipate supply to be tight as we enter the peak demand season."

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The Mylan Follies Starring Chief Executive Posts Closing Notice

After 12 years at the helm that included a 400% price increase in life-saving Epi-Pens plus a severe shortage, Chief Executive Officer Heather Bresch is retiring from Mylan. The company is now merging with Pfizer’s off-patent drug business to form a new company yet to be named. Read the article below about the good and the bad performance by Mylan under Bresch’s leadership. We can only hope for improvement in the future.

The Mylan Follies Starring Chief Executive Posts Closing Notice

Mylan CEO Heather Bresch
Illustration by bigjon

The personal views of an activist for anaphylaxis prevention

Op-Ed opinion article written by Jon Terry
August 12, 2019

This article is a summary of recent business activities involving Mylan Pharmaceuticals and Chief Executive Officer Heather Bresch. All the text material was obtained from news sources readily available on the World Wide Web. The opinions expressed by Jon Terry are solely his own and are not necessarily endorsed by the Allergy Advocacy Association.

After a long run, the final curtain has fallen for Mylan Pharmaceuticals Chief Executive Officer Heather Bresch. And she might be thinking “… not a minute too soon, thank heaven.” Rave reviews for her performance may be few and far between.

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Mother Advocates for NYS Governor's Signature on Gio's Law

Gio's Law passes NYS legislature

It’s every allergy parent’s nightmare to lose a child due to anaphylaxis, but in memory of her son, Georgina Cornago Cipriano is determined to advocate for legislation to prevent this tragedy from happening to another family. “Gio’s Law” would authorize certain law enforcement officers and firefighters to possess and administer epinephrine. It was recently passed by the New York State legislature and is awaiting Gov. Cuomo’s signature. Read below about Georgina’s many efforts to encourage others to get educated and be proactive in creating an allergy treatment plan for their children.

Mother Advocates for NYS Governor's Signature on Gio's Law

Giovanni (left) and his mother Georgia Cipriano (right)
Giovanni (L) and his mother Georgia Cornago Cipriano (R)

By Kristen Stewart
July 15 th, 2019

Everything can change in an instant for anyone living with life threatening allergies. Georgina Cornago Cipriano knows this all too well — and is working hard to make sure other families don't have to experience the same heartbreak that hers has.

Her son Giovanni was a happy, healthy baby. Even as he grew and was diagnosed with allergies to peanuts, eggs, cats, dogs, mold and hay fever he remained active in school, sports and activities. He had a few encounters with peanuts over the years that resulted in vomiting, hives, and a bit of a tingly or scratchy throat but his issues resolved after a dose of an antihistamine.

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Albany Update in Light of Ongoing Epi Shortages and Possible Price Fixing

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.

2019 May 19 Albany Food Awareness Event-AM Thomas J. Abinanti, AM David Buchwald and Jon Terry
(R to L) AM Thomas J. Abinanti, AM David Buchwald and Jon Terry.
Photo by N. Kemp

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.

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EAI Injectors Still in Short Supply

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

EpiPen World Wide Production Line cartoon

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.

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Epi Near You New York Volunteers Spread the Word on Anaphylaxis

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!

Damien Rzepka with daughter
Damien Rzepka with daughter
Sandy Glantz
Sandy Glantz

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.

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