Articles for Advocacy

Family Food Allergy Foundation Memorializes Elijah-Alavi

The parents of three-year-old Elijah-Alavi were devasted by the loss of their son. While at preschool, Elijah, who had food allergies including dairy, was mistakenly given a grilled cheese sandwich. He suffered a fatal attack of anaphylaxis. From that tragedy Elijah’s parents embarked on a path of advocacy and education, so that other parents wouldn’t have to experience the same heartbreak. They founded the Elijah-Alavi Foundation, which includes “Elijah's Echo,” an initiative raising awareness of food allergies and anaphylaxis. The Allergy Advocacy Association worked closely with his parents on the successful passage of Elijah's Law in September 2019. This law provides the framework to establish guidelines for daycare providers for the prevention of and response to anaphylaxis.

Elijah-Alavi
Elijah-Alavi

Silvera Family Raises Awareness of Food Allergies in Childcare Facilities

By Kristen Stewart
June 8th, 2020

Was.

It's just one little word, only three letters long, but it still has the power to break the heart of Thomas Silvera every time he uses it in reference to his son Elijah-Alavi who passed away at the age of three after an anaphylactic reaction.

"I think about the world of potential before him," says Thomas. "I think about his bright spirit that so many were robbed of experiencing. I think about his smile. I think about his best friend, brother, and my eldest son Sebi, and the life that they will no longer have together as a dynamic duo."

November 3, 2017 began like any other day with Elijah going to preschool in New York City. He had food allergies including dairy as well as asthma so the school had written and verbal instructions including asthma and food allergy action plans and his doctor's instructions about symptoms to look out for. Thomas and his wife Dina Hawthorne-Silvera had also given the school a list of foods Elijah should not be fed.

Despite these many precautions, on that day Elijah was given a grilled cheese sandwich. To make matters worse school personnel did not tell Elijah's mother what he had eaten and only said he was having an asthma attack. School personnel didn’t call 911 and didn’t administer epinephrine.

Thomas and Dina were devastated but also inspired to make a difference. "I think about how the moment where his life ended was also the moment that my life, quite literally, changed forever," says Thomas. "For my wife and I, the way this was, was us coming up from our grief deciding that Eli's life would be used to change law, policies, and practices." In short, they don’t want any other families to experience what they went through.

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Dillon Mueller Memorial Fund Helps Save Lives

This story about the death of Dillon Mueller of Wisconsin reminds us of Ruthie T. Cornell, our founder Jon Terry’s sister. She also died from a bee sting and did not know she was allergic. Like George and Angel Mueller, we have worked tirelessly to have legislation enacted. We want everyone from bus drivers to first responders and restaurant workers to have access to non-patient specific epinephrine. And just like Dillon’s parents, we conduct training sessions for anyone who wants to learn what to do in an anaphylaxis emergency and how to use an epinephrine auto-injector (EAI) device. Dillon’s family knows of at least 7 people whose lives were saved because of their efforts.

Dillon Mueller Memorial Fund Helps Save Lives

Dillon Mueller on Dirt Bike

Fund Helps Increase Availability of Epinephrine in Wisconsin

By Kristen Stewart
May 14th, 2020

By the time he turned 18 years old, Dillon Mueller of Mishicot, Wisconsin had already spent years making an impression on his family, friends, and community.

He was an award-winning dirt bike racer since the age of 6, an Eagle Scout, and a member of Future Farmers of America. He was so beloved the crowd chanted "Do It for Dillon" to raise the bids when he volunteered his services at a fundraising auction. He made a difference in quieter ways too. He showed a genuine interest in others and befriended everyone at school from the autistic kids to the quarterback to the teachers. He was also the first in line to help anyone in need. "Even though he was in his barn clothes, if somebody wanted help, he'd be off and running with cow poop still on his shoes," remembers his mother Angel.

The youngest of Angel and her husband George's three sons, Dillon was supposed to be the seventh generation to run their family farm. Instead he is leaving a different kind of legacy — one of donated organs and as the inspiration for the Dillon Mueller Memorial Fund which works tirelessly to provide greater access to epinephrine in Wisconsin and around the country.

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Now What? A Layman’s Appraisal of Covid-19…

We hate to pile on with the doom and gloom, but this article describes the current situation and all the possible after-effects on such things as funding for charitable causes. Since asthma sufferers might be at increased risk if exposed to the virus, we are including links to some excellent webinars for all on practical treatment suggestions to those exposed to COVID-19. Meanwhile we remain hopeful about upcoming legislation at both the federal and state levels to address the specific needs of those living with severe allergies such as requiring training and awareness at restaurants.

As we hear more positive news about medications that work as well as vaccines, we will be sure to pass it on!

Now What? A Layman’s Appraisal of Covid-19…

Allergy Advocacy Association Logo Covid-19 Question Marks

…how it effects Allergy Advocacy and….well, everything else, too

By Jon Terry, founder
April 14th, 2020

Greetings.  At this time of international crisis, I sincerely hope all our readers are healthy and safe.

The coronavirus pandemic has impacted almost everyone around the globe.  So many serious questions remain unanswered. How many lives will be lost? How many more individuals will become infected?  How long will so many people need intensive medical care?  When will the number of people at risk for COVID-19 begin to decline? (Who knows?)

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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 AllergyMoms.com 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.

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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

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(GettyImages)

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©?

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[AP]
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

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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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