Family Food Allergy Foundation Memorializes Elijah-Alavi

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.    Read the article here.

Allergy Advocacy Association Returns to Albany for Epi Entity Stocking legislation

“JonAllergy Advocacy Association Returns to Albany for Epi Entity Stocking legislation

With a rallying cry of Epi Everywhere! Every Day! Right Away! The Allergy Advocacy Association is teaming up with the Allergy and Asthma Network to help get legislation passed to enable a variety of public locations to stock epi-pens just like they do AED defibrillators. Read all about our efforts here.

April 15th, 2015
By Jon Terry


Greetings from Jon Terry, the founder of the Allergy Advocacy Association. Our association is dedicated to supporting programs helping in the prevention of anaphylaxis through AWARENESS, ALERTNESS & ACTION.

Slogans have a way of sticking in my head. It doesn't matter too much if the words successfully convey their message or not. The ones that sound corny or silly seem to hold equal status with those that ring true and have great appeal.

"My Country Right or Wrong!"
"Give Me Liberty or Give Me Death!"
"There’s no such thing as a free lunch."
"Je Suis Charlie."

The Allergy and Asthma Network (AAN), a nation-wide not-for-profit supporting individuals at risk for anaphylaxis and asthma, has previously publicized a catchy phrase that I particularly admire.

"EPI EVERYWHERE EVERY DAY!"

You can be sure that these are sentiments that the Allergy Advocacy Association takes firmly to heart.

Now AAN has come out with a new, improved version:

"EPI EVERYWHERE! EVERY DAY! RIGHT AWAY!"

Who says you can't improve upon perfection?? The Network has taken a firm stand by using simple language. This slogan conveys the importance as well as the urgent need to pass legislation and to implement programs that will help save lives.

Here in New York State, how might our association best support these admirable sentiments? I think we can best help matters by continuing to advocate for improved access to epinephrine EVERYWHERE!

There are statistics that show the importance of immediate administration of epinephrine when symptoms of anaphylaxis occur after eating certain foods, taking medications or being stung by an insect. Unfortunately, there are also statistics of people who lost their lives because epinephrine was not available.

Mylan Specialty sponsors an EpiPen4Schools program that provides free Epi-PensTM for qualifying schools throughout the U.S. Their annual survey found 919 episodes of anaphylaxis in the 2013-2014 school year alone.

Most significantly, in 22% of cases anaphylaxis occurred in students or staff members with no known allergies, and they would not have had a prescribed Epinephrine Auto-Injector device (EAI) on hand (For more details please see the March e-newsletter on our Web site). Continuing improvement of access to epinephrine beyond the boundaries of our school districts is the best way to save lives when anaphylaxis occurs.

I would like to propose EPI ENTITY STOCKING legislation here in New York. It would authorize the presence of epinephrine auto-injector devices at facilities open to the general public. Any public entity where individuals with life-threatening allergies might conceivably congregate and could possibly have an anaphylaxis attack would be allowed (BUT NOT REQUIRED) to stock the Epinephrine Auto-Injector device (EAI). It is my hope that the most obvious locations—restaurants, sports stadiums, museums, summer camps, swimming pools, amusement parks—would then have EAI devices available as a part of their stocks of emergency medical supplies. Furthermore, many of them already have life-saving devices such as the Automatic Electronic Defibrillator (AED) readily available.

If this sounds like a radical idea, perhaps it is here in New York; but other states, including Florida, have already enacted entity stocking laws. And I believe that our state can successfully follow the route established by other states without losing our way or endangering any residents of New York State. The sooner we get started, the safer our society will be for individuals with life-threatening allergies.

On Tuesday, May 19th the Allergy Advocacy Association will participate in an anaphylaxis awareness raising event in Albany. We will actively support any reasonable legislation that improves access to epinephrine. From 9am to 4pm we will be exhibiting at the concourse entrance to the Legislative Office Building in the New York State capitol. Please join our advocacy efforts by attending or by signing our petition supporting Epi Entity Stocking on Change.org.

Our association also has a slogan that I think clearly expresses our goal. "Not another life lost to anaphylaxis - Not another life lost to ANY life-threatening allergies!" I hope it will resonate in your consciousness just as much as it does in mine. Best wishes and thanks a lot!

Jon Terry

Many Schools Face Challenges Implementing Stock Epinephrine

“SchoolMany Schools Face Challenges Implementing Stock Epinephrine

The good news is that laws have been passed to enable schools to stock epinephrine for use on anyone in an emergency. But now the real work begins for implementation. There are many issues to be addressed such as funding and training all necessary personnel including coaches, teachers, cafeteria workers and bus drivers. They will need to learn to recognize signs of anaphylaxis and how to administer epinephrine auto-injectors. Read the full article below.

March 25, 2015
By Brenda Silvia-Torma

As the movement spreads to pass legislation allowing or requiring schools to stock emergency supplies of epinephrine, the challenge becomes finding ways to implement these laws.

It’s not as simple as it may seem.

School nurses and administrators tasked with developing stock epinephrine policies must address simple questions like where to store epinephrine auto-injectors, as well as more complicated ones like how to train staff to know when and how to administer epinephrine, the first-line treatment for a severe allergic reaction, or anaphylaxis.

In July 2014, the National Association of School Nurses (NASN) formed the Epinephrine Policies and Protocols Workgroup to develop resources that aid schools and school nurses with implementing stock epinephrine policies. The workgroup was comprised of members of NASN, the National Association of State School Nurse Consultants and the American Academy of Pediatrics.

Michael Pistiner, MD, MMSc, board-certified pediatric allergist at Harvard Vanguard Medical Associates in Boston and an Anaphylaxis Community Expert (ACE) with Allergy & Asthma Network, was a volunteer member of the workgroup.

Dr. Pistiner shared some of the difficult issues schools address when developing stock epinephrine policies:

  • Training teachers, cafeteria workers, bus drivers, coaches and other unlicensed assistive personnel to recognize the signs of anaphylaxis in students who do not have a prior history of allergic reactions – and to correctly administer the epinephrine auto-injectors.
    “School nurses are best suited to administer epinephrine to those experiencing a first-time anaphylactic reaction at school,” Dr. Pistiner says. “When a school nurse is not immediately available, someone else will need to be trained to administer the medication. Approximately 25 percent of epinephrine treatments in schools are to students without a previously known severe allergy, so policies and protocols need to be in place to ensure schools are ready.”
  • Ensuring that stock epinephrine protocols are flexible enough – and at the same time uniform – in defining anaphylaxis and providing guidance toward appropriate management.
    “The protocol should not be too broad because that could result in treating non-allergic issues with epinephrine,” Dr. Pistiner says. “It should not be too restrictive, either – this could result in life-threatening consequences by delaying the appropriate treatment.”
  • Finding room in school budgets to afford the cost of epinephrine auto-injectors and identifying a medical provider to write prescriptions.
    “Stock epinephrine in schools saves lives,” Dr. Pistiner says. “The resources we developed in the NASN workgroup, which can be adapted to each district’s requirements, will support school nurses in getting policies implemented.”

The Epinephrine Policies and Protocols Workgroup was sponsored by Mylan Specialty L.P. Read the workgroup’s recommended resources as well as sample school district policies.

Blood test predicts severity of peanut and seafood allergies

test-tube-with-blood-sample-glove-hands 285Blood test predicts severity of peanut and seafood allergies

Wouldn’t it be great to have a simple blood test to find out if you would have a serious reaction to allergen? Researchers at Mt. Sinai Hospital in New York City are very close to developing just such a test. It will be a much safer and more reliable way to diagnose life-threatening allergies than using skin prick tests or ingesting food under a doctor’s supervision.

April 1, 2015

A new blood test promises to predict which people will have severe allergic reactions to foods according to a new study led by Mount Sinai researchers and published online in the The Annals of Allergy, Asthma & Immunology.

To detect food allergies, physicians typically use skin prick tests or blood tests that measure levels of allergen-specific IgE (sIgE), a protein made by the immune system. However, these tests cannot predict the severity of allergic reactions. Oral food challenges, in which specific allergens are given to patients to ingest under physician supervision to test for signs or symptoms of an allergic reaction, remain the gold standard for diagnosing food allergy even though the tests themselves can trigger severe reactions.

In the newly published study, Mount Sinai researchers from The Mindich Child Health and Development Institute and the Jaffe Food Allergy Institute report that by counting the numbers of one type of immune cell activated by exposure to a food, a simple, safe blood test can accurately predict the severity of each person's allergic reaction to it. The immune cell measured is the basophil, and the blood test, the basophil activation test or BAT, requires only a small blood sample and provides quick results.

"While providing crucial information about their potential for a severe allergic reaction to a food, having blood drawn for BAT testing is a much more comfortable procedure than food challenges." says first author Ying Song, MD. "Although food challenges are widely practiced, they carry the risk of severe allergic reactions, and we believe BAT testing will provide accurate information in a safer manner," says Dr. Song, also a researcher in the Jaffe Food Allergy Institute at The Mount Sinai Hospital.

"Although the blood basophil activation test has been shown to be an important addition to the tools available for discriminating between allergic and non-allergic individuals and predicting the severity of food allergy reactions, at this time it is only approved for research purposes," says senior author Xiu-Min Li, MD, Professor of Pediatrics at the Icahn School of Medicine.

Investigators took blood samples from 67 patients, ages 12 to 45 years, who also underwent a food challenge with a placebo or with peanut, tree nut, fish, shellfish, or sesame. The goal was to see if the BAT test results would correlate with food challenge results. The study was double blinded, so neither researchers nor patients knew which person received a placebo or one of the allergens, which were administered at random.

Before the randomized food challenge, researchers collected blood from all patients and analyzed the results, which showed a strong correlation between BAT testing data and food challenge severity scores. This finding provides evidence that BAT testing can reduce the need for food challenges not only for peanut, but also for tree nut, fish, shellfish, and sesame and perhaps for other foods.

Story Source:

The above story is based on materials provided by Mount Sinai Medical Center.

Note: Materials may be edited for content and length.

Journal Reference

  1. Ying Song, Julie Wang, Nicole Leung, Li Xin Wang, Lauren Lisann, Scott H. Sicherer, Amy M. Scurlock, Robbie Pesek, Tamara T. Perry, Stacie M. Jones, Xiu-Min Li. Correlations between basophil activation, allergen-specific IgE with outcome and severity of oral food challenges. Annals of Allergy, Asthma & Immunology, 2015; 114 (4): 319 DOI: 10.1016/j.anai.2015.01.006

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