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.

New laws improve access to Epinephrine in NYS Schools

NYS sealNew laws improve access to Epinephrine in NYS Schools

Here are all the details of the legislation recently passed to protect children in New York state schools who are at risk for anaphylaxis. We are proud to report legislators from both parties worked together to get these important laws passed. But we do not plan to rest on our laurels! See ideas for future legislation we would like to propose that will give high school students training on how to recognize the symptoms of anaphylaxis and administer epinephrine via an Epinephrine Auto-Injector (EAI) device. We could also follow Florida’s example of passing a law that would allow various public venues to stock epinephrine auto-injectors, in an effort to better protect those at risk for anaphylaxis.

November 12th, 2014

By Jon Terry

On October 30thNew York Governor Andrew Cuomo signed into law two pieces of legislation that will better protect students in New York State (NYS) schools from the risks of anaphylaxis.  Anaphylaxis is a life-threatening allergic reaction frequently caused by peanuts, tree nuts, milk, eggs, soy, wheat, medications, insect stings and/or latex.  With the signing of Assembly Bill A9334B/Senate Bill S7758 and Assembly Bill A07791A/Senate Bill S7262A, the Allergy Advocacy Association believes that access to the life-saving medication epinephrine has been vastly improved in NYS. 

The first bill, also known as the Student Medications Carry Act, ensures students' rights to self-carry and administer prescribed epinephrine auto-injectors (EAIs) in school. (New York students already have the right to self-carry prescribed asthma medications including bronchodilator inhalers.)

"This legislation is a significant milestone in the national movement to protect students with asthma and life-threatening allergies at school," says Tonya Winders, president and CEO of Allergy & Asthma Network (The Network). "We applaud the many parents, students, volunteers, legislators and community activists who worked tirelessly to support self-carry laws in all 50 states." 

Nationwide self-carry legislation for asthma and anaphylaxis medications has been 10 years in the making.  In 2004, The Network, working with stakeholder groups and volunteer advocates, supported federal legislation encouraging states to protect students' rights to carry and use bronchodilator inhalers and epinephrine auto-injectors in school. The campaign to get similar laws passed in all 50 states has finally culminated with Governor Cuomo's signing of the New York legislation.

The second bill, the Nurse Authorized Stock Epinephrine (NASE) Act, is every bit as significant as the first.  NASE authorizes schools to stock emergency supplies of epinephrine auto-injectors and allows school nurses or designated personnel to administer epinephrine to students experiencing anaphylaxis whether or not they have a prescription for it. New York becomes the 45th U.S. state to approve stock epinephrine legislation.

In related good news there is now data available demonstrating that previously enacted NASE legislation in other states is already saving lives in schools.  According to the American Journal of Preventive Medicine, a study provided by Northwestern University showed that the medication has been administered 38 times since the Chicago Public Schools began stocking epinephrine auto-injector devices during the 2012-2013 school year. Ninety-two percent of those who received injections from the EAI devices were students.   

Additionally, results from a recent survey conducted by Mylan Specialty Pharmaceuticals found that of 919 reported cases of anaphylaxis in the schools during 2013-2014, more than one in five occurred in individuals without an established or known allergic trigger.  Having the stock epinephrine on hand truly made a difference.

The Allergy Advocacy Association congratulates all of the legislators who voted to pass these bills during the 2014 session in Albany and we are very grateful to Governor Cuomo for signing them into law. NY will finally have high-profile state laws that have clarity and uniformity and can be enforced and monitored.  They are vitally important additions to already existing guidelines and protocols protecting children with life-threatening allergies.

Are there other steps that can be taken to raise awareness and protect lives?  Our Association believes that there are.  For example, the enactment of A9298/S7096 in NYS may aid our efforts.  The law requires the state Education Department to make recommendations to the Board of Regents to require high schools to train students in CPR and the use of automated defibrillators also known as AEDs; it will take effect in early 2015. 

There is no doubt this is important legislation.  About 400,000 people have heart attacks outside the hospital setting every year in the U.S. and only about 10 percent survive according to the American Heart Association (AHA).  "Governor Cuomo's signature on this bill has the potential to make New York a safer state for all," said Dan Moran, chairman of the state advocacy committee of AHA.

This law could make even more of an impact by including instruction for the students on how to recognize the symptoms of anaphylaxis and how to administer epinephrine via an epinephrine auto-injector device. It might even be possible to insert EAI instruction procedures into the proposed new training program without additional legislation.   Training programs for students on how to respond to anaphylaxis emergencies might save lives that otherwise could be lost. 

Another step toward increased safety that NY could consider is known as “Entity Stocking” which allows public venues to stock EAIs in an effort to better protect people from the risk of anaphylaxis.  Florida in fact recently passed a ground-breaking bill that is the most comprehensive stock epinephrine legislation introduced to date in any U.S. state. The Emergency Allergy Treatment Act HB 1131, which was signed into law on June 13, 2014 by Governor Rick Scott, amends previous legislation to allow several public “entities” to be prescribed epinephrine auto-injectors to be kept on hand in case of anaphylaxis.   Other states that have passed similar legislation include Oregon and Rhode Island.

Authorized entities include restaurants, sports arenas, swimming pools, beach resorts and more – the legislation states that an authorized entity is virtually anywhere where it’s possible people will come into contact with allergens.  The legislation allows these stock devices to be administered by trained personnel or non-trained personnel in an emergency with authorization from a medical practitioner.

“People who know they are allergic to various types of stings, they’re usually pretty good about having an auto-injector,” Representative Matt Hudson, who introduced the bill, told Allergic Living magazine. “But in the case of food allergies, sometimes you just flat out don’t know. In such instances, having an epinephrine auto-injector available could prove a lifesaver.”

On November 7th Mylan Specialty Pharmaceuticals announced it had signed a multi-year strategic alliance agreement with Walt Disney Parks and Resorts to help increase awareness of anaphylaxis.  The agreement includes updated maps in Disney's domestic theme parks and on its cruise ships as well as updated signage in the parks that highlight locations with EpiPen® and EpiPen Jr® Auto-Injectors. Over time, the companies also will introduce a variety of educational resources designed to increase awareness of and preparedness for severe allergic reactions.   With the enactment of HB 1131 in Florida, Disney World in Orlando may soon become a much safer place for families to vacation. 

If you would like more information or want to get involved with our advocacy efforts in NYS, please visit our Web site.  The address is:

www.AllergyAdvocacyAssociation.org

The Allergy Advocacy Association greatly appreciates any support you might choose to give us.  The vision of our Association is a clear and direct one: “Not another life lost to anaphylaxis – Not another life lost to ANY life-threatening allergies!”

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