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.

Emergency Allergy Treatment Act submitted to NYS legislature

New York State Capitol BuildingEmergency Allergy Treatment Act submitted to NYS legislature

It’s always nice when our elected officials take the initiative to sponsor legislation that will help save lives. State Senator Michael H. Razenhofer is leading an effort to enact the Emergency Allergy Treatment Act and Assemblyman Thomas J. Abinanti has recruited supporters in the Assembly. You can read all about the legislation here, and we hope you will join us at our awareness raising event in Albany on May 19 from 9am to 4pm at the entrance to the legislative office building and/or sign our petition at www.change.org.

May 10th, 2015
By Jon Terry

Greetings from Jon Terry, the founder of the Allergy Advocacy Association. Concerning anaphylaxis, life-threatening allergies and epinephrine, important new legislation is being proposed during the current session of the New York State legislature in Albany.

At the end of April, New York State Senator Michael H. Ranzenhofer (R, C, IP) 61st Senate District submitted Bill S4935-2015, the Emergency Allergy Treatment Act for consideration of the senate health committee. The bill authorizes the certification of persons to administer lifesaving treatment to individuals who have severe allergic reactions when a physician is not available; allows an authorized entity to acquire and stock a supply of epinephrine auto-injectors with a prescription. “Authorized entity” includes restaurants, recreation camps, youth sports leagues, theme parks and resorts, entertainment venues and sports arenas.

In a letter to our association announcing his bill, Senator Ranzenhofer stated that his legislation was “…modeled after the recent Florida law enacted in 2014.” The Senator has previously voted in favor of new laws improving access to life-saving epinephrine in NYS schools, including the Student Medications Carry act and the Nurse Authorized Stock Epinephrine act last year. “You can be assured that I will continue to be a strong voice in Albany on behalf of (your association) and all the residents of the 61st district,” he said.

This past Wednesday Assembly member Thomas J. Abinanti (D) Assembly District 92 followed suit in the assembly by introducing Bill NYS A07349 for consideration by the assembly education committee. Assembly co-sponsors include Assembly members Miller, Otis, Rivera, Buchwald, Galef, and Simon. Tom Abinanti was the principle sponsor for the Nurse Authorized Stock Epinephrine bill that was signed into law in 2014.

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.

  • The American College of Allergy Asthma and Immunology (ACAAI) estimates 500 to 1,000 deaths per year in the US from anaphylaxis. 
  • The number of children with reported food allergies continues to rise — from 3.5 percent in 1998 to 5.2 percent in 2012, according to the National Center for Health Statistics.  
  • 8% of US school children (potentially as many as two in every classroom) may suffer from a food allergy.
  • 50% of ALL fatal reactions to insect venom occur with NO previous history of life-threatening allergic reactions.

I believe that these two bills would significantly improve access to epinephrine in an anaphylaxis emergency. 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). Furthermore, many of these businesses or public facilities already have life-saving devices such as the Automatic Electronic Defibrillator (AED) readily available.

On Tuesday, May 19th the Allergy Advocacy Association will participate in an awareness raising event in Albany. From 9am to 4pm we will be exhibiting at the concourse entrance to the Legislative Office Building in the NYS Capitol. Please join our advocacy efforts by attending or by signing our petitions on www.Change.org.

I believe that our New York can successfully follow the route established by other states that have already made Epi Entity Stocking a reality. The sooner we get started, the safer our state will be for individuals with life-threatening allergies. The goal of the Allergy Advocacy Association is a clear and direct one. "Not another life lost to anaphylaxis - Not another life lost to ANY life-threatening allergies!" Thanks and best wishes! 

Epi Kits for EMS?

Syringe Drawing Meds from BottleEpi Kits for EMS?

Are less expensive Epi Kits a suitable replacement for epi pens, particularly for emergency personnel? Several states have found that they are, and others are considering them. The Allergy Advocacy Association set out to research the issue, and here is our ‘white paper’ reporting what we have found so far. Read the full article here.

May 8th, 2015
By Janet Goldman

The Allergy Advocacy Association is dedicated to educating and advocating for those with severe allergies. When recently alerted to Epi Kits, a new alternative to epinephrine auto-injectors, we chose to investigate the possibilities. We researched the usage, effectiveness and perspectives towards this treatment protocol.

What Are Epi Kits?

Epi Kits are a new treatment for severe allergic reactions known as anaphylaxis. Using a vial and a syringe, emergency medical services have begun to use these new epinephrine kits. For emergency crews, Epi Kits could become a preferred alternative to epinephrine auto-injector (EAI) devices which were patented back in 1977. Three states currently use this new product: Florida, Montana and Washington. The restriction of who can use the Epi Kits varies by state. In Florida, only the paramedics can use the Epi Kits. Their firefighters and emergency medical technicians (EMTs) need to use the epinephrine auto-injectors. However, in Montana and Washington, EMTs are using the Epi Kits.

Cost Comparison

The cost of Epi Kits is considerably less than epinephrine auto-injectors. Reported expenses have varied from $4 to $10 with even lower fees for simply replacing the epinephrine. To the other extreme is the cost of EAI devices that also varies but at a considerably higher level, close to $200. These costs have dramatically risen over recent years. The local prices vary depending upon insurance coverage and the patient’s usage of manufacturer discounts. Besides the unit cost, patients must also factor in the replacement costs. EAI devices usually expire within a 12-month period.

Last year 31 fire departments began using Epi Kits in Washington, saving $150,000 and more than doubled the usage of epinephrine by EMTs. According to James Duren, Standards Manager for King County’s Emergency Medical Services, in Washington, “Due to the cost of the auto injectors and the lack of use, the state allowed the medical directors to make the decisions to allow the EMTs to give EPI IM (epinephrine intramuscular) for patients requiring it”. 

Efficiency Comparison

The efficiency with which Epi Kits can be administered is affected by the syringe technique. Both methods include products that account for the patient’s size. EAI devices come in two sizes, 0.3 mg (patients weighing 66 pounds or more) and 0.15 mg. (patients weighing 33-66 pounds).

According to Mr. Duren, with training, EMTs can do the procedure more efficiently. Mr. Duren developed a training program after he realized “The problem was there was no consistent way of doing the training or even what supplies were used to accomplish the task. The result was a little unnerving to me as some agencies carried multi dose vials of epinephrine and a syringe in a plastic bag.” He reported that they have significantly increased the usage of the Epi Kits from 40 to 110 uses. Similarly, he reported that they noticeably increased the appropriate usage from 50% to 98%. With training, Mr. Duren has said that the vial and syringe technique takes about 2 minutes whereas the auto-injector technique takes about 45 seconds.

Washington’s updated training procedures include using epinephrine for less severe signs of severe allergic reactions. This change was lobbied for by Kelly Morgan, president of a Washington advocacy group, Food Allergy Eczema Asthma Support Team (FEAST).

Perspectives on Epi Kits

According to Seattle Times reporter, JoNel Aleccia, Mylan Specialty criticized the Epi Kit for being more time consuming when time is so important. With concerns for the safety of this alternative treatment, the Allergy Advocacy Association surveyed the personal opinions of a few nurses from a number of different nursing groups such as school nurses, emergency nurses and a cardio rehab team. Their concerns varied: possible needle stick injuries from the syringe, the proper dosage and the ability to load the syringe efficiently. Their supporting comments included the belief that the time factor wouldn’t be a problem if routine training were provided to assure the users’ competency. An important stipulation provided was the comment that nurses are “in a different world” than EMTs. Additionally, the Allergy Advocacy Association surveyed a few local allergists. Their concerns included whether there are pre-markings to avoid errors and whether usage is limited to health care providers. The Epi Kits would be good for health care providers but not for schools or camps due to the “increased difficulty of administration.” Positive comments included Epi Kits as a great option if they increase the availability of epinephrine at a much lower cost. Additionally favorable was the flexibility for larger individuals who might need a larger dose, such as 0.5 ml rather than 0.3 ml.

Current NYS Ambulance Anaphylaxis Treatment Procedures

Ambulances must have epinephrine to treat anaphylaxis. Not knowing if the ambulance will have a paramedic or an EMT, the ambulances need to be equipped with EAI devices. This equipment requirement has led to significantly high amounts of wasted funds on unused EAI devices. Paramedics currently use syringes and vials as members of emergency crews. But not the EMTs; they use EAI devices.

New York State’s Approval Process

Current NYS regulations for emergency medical services stipulate that all in-service ambulances must be equipped with epinephrine. This requirement is for adult and pediatric patients and may be met by stocking both adult and pediatric epinephrine auto-injectors. The regulation further stipulates that the users must have appropriate training.

Montana’s Approval Process

Montana’s EMTs didn’t need a legislative change to allow usage of the Epi Kits. According to Shari Graham, Montana’s EMS Systems Manager, “This issue was already on the radar of the Board of Medical Examiners (BOME) for use by EMTs on wild land firefighting crews. We simply asked that the BOME approve the protocol revision for all EMTs with the Montana medication endorsement. There was discussion by the EMS medical director committee and they approved the proposal without hesitance.”

Florida’s Approval Process

According to a Wink News story of March 2015, the EMS Council for the North Collier Fire District is writing a letter to the Collier County Medical Director and the Florida Department of Health, seeking approval for EMTs and firefighters to use Epi Kits.

Conclusion

Based upon our findings of our ‘white paper,’ the Allergy Advocacy Association is not opposing or promoting the usage of Epi Kits as a substitute for EAI devices by EMS personnel. We are simply presenting the facts that we currently have for the consideration of our readers. And we do NOT recommend Epi Kits for personal use by allergy patients.

Olympian vaults to defense of allergic kids in Texas

Mitch and Valentina GaylordOlympian vaults to defense of allergic kids in Texas

It took a near tragedy for Olympic champion Mitch Gaylord and his wife Valentina to realize there are no requirements in Texas to stock epinephrine in schools. Their two children have peanut allergies and Luc, now 4, almost died from an anaphylaxis attack. They found that one in 13 children suffer from allergies that can be life threatening, and 25 percent of those kids will suffer their first seizure in a school. And, each succeeding seizure becomes more severe. Thanks in part to their efforts, the Texas state Senate approved a bill mandating epinephrine in public and charter schools unless a district cannot afford it, and similar legislation is in a House committee.

May 1st, 2015
By David Scott

BEE CAVE, Texas (KXAN) — Olympic gold medal gymnast Mitch Gaylord lives in Bee Cave these days, where he and his wife Valentina run the Lagree Studio for fitness. They are especially concerned about the health and lives of children as two of their own suffer from dangerous peanut allergies.

In fact, 160,000 Texas children suffer from such food allergies that could turn life threatening in an instant. Texas is also one of a handful of states that does not mandate, or enable, public schools to keep a drug on hand that could save lives, and the Gaylords are working to change that.

Mitch and Valentina will never forget the day Luc, now 4, went into his first anaphylaxic shock. They had no idea he and his sister Valletta were allergic to peanuts.

“All of a sudden he took his plate and threw it off the table. He doesn’t act like that and all of a sudden he was swelling up,” Valentina said. “We called 911. I was horrified, he was vomiting. We didn’t know anything about anaphylaxis, I didn’t know it could be fatal so quickly.”

Mitch had a similar memory of the incident.

“He took one bite and immediately pushed the plate away. We just panicked. It’s a scary thing…and he was going into a bad place.”

Luc recovered from his seizure but has made three emergency visits to the ER because of his allergy.

Most states have provisions for public schools to keep the drug epinephrine on hand, ready to administer in the moment an allergic student goes into seizure, unable to breath. They were shocked to learn Texas is not one of them.

“I don’t understand why any school or any restaurant, public place that serves food, would not want a life saving device in their establishment,” Valentina said. “It’s absolutely critical.”

“I think it’s a necessity, like a fire extinguisher,” Mitch added. “If there is a fire, God forbid you’ve got a protection device.”

The epinephrine device is easy to administer and takes just seconds. The Gaylords have supplied it to the elementary school where their kids go, but they are worried about other Texas children, so they are lobbying the legislature to make epinephrine available across the board.

“Every second counts and anaphylaxis shock takes seconds,” Valentina said, “and it can be fatal in minutes.”

“The point is it’s all about parents wanting their children to feel safe, when they are at school and away from them,” Mitch added. “We can’t police them 24/7, nor do we want to.”

The state Senate, spearheaded by Sen. Juan Hinojosa, D-Corpus Christi, has approved a bill mandating epinephrine in public and charter schools unless a district cannot afford it. Similar legislation is in a House committee.

One in 13 children suffer from allergies that can be life threatening, and 25 percent of those kids will suffer their first seizure in a school. Each succeeding seizure becomes more severe.

Chicago began supplying its schools recently and administered epinephrine 38 times the first year. Some school districts worry about legal liability and the cost of keeping epinephrine in stock, but several distributors have offered free or discounted supplies.

As Mitch Gaylord might say, it just takes a leap of faith.

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