The Allergy Mom® Melissa Scheichl Provides Education and Support

Melissa Scheichl

Growing up Melissa Scheichl (aka The Allergy Mom®) of the Greater Toronto Area of Ontario, Canada, had both seasonal and food allergies and her mother suffered a dangerous anaphylactic reaction to a bee sting. As challenging and scary as these experiences were, however, allergies did not become a major focus of her life until her children were born almost 16 and 14 years ago.  
Read the article here.

A Simple Way to Save Lives — If You Can Afford It

EAI devices: EpiPen Twinject, VAuviQ imageA Simple Way to Save Lives — If You Can Afford It

Rising retail costs and other barriers are preventing people with severe allergies from obtaining epinephrine auto-injectors for emergency use during anaphylactic reactions. Prices have skyrocketed during the past few years, even with increased competition. Read the complete article below written by a concerned mother and physician.

By Linda Arnold • December 02, 2014 • Pacific Standard (PSmag.com)

With Halloween safely behind them, parents of the millions of children with severe food allergies are now preparing for an onslaught of pecan pies and gourmet side dishes. It’s not just the holidays that scare us, however; every school day brings new and well-founded fears about accidental exposures to tiny, but potentially lethal, amounts of foods commonly packed in other kids’ lunches, concealed in birthday cupcakes, or cross-contaminating meals purchased on field trips. We fear school personnel will fail to recognize the variable signs of anaphylaxis, or know when and how to administer life-saving medication to our children.

Approximately six to eight percent of children have food allergies, and one percent of the population—including my nine-year-old son—is allergic to nuts or peanuts, which cause 94 percent of deaths from food-related anaphylaxis. Most allergic reactions in children occur at school or daycare, and the majority of schools do not have full-time nurses (if they have them at all). Put simply: Most allergic reactions occur when children are away from home, without their parents, in places without trained medical personnel on site. In fatal cases of food-related anaphylaxis, the average time from exposure to death is less than 30 minutes.

When given promptly, epinephrine is tremendously effective in treating anaphylaxis. Despite this, rates of epinephrine administration by pre-hospital medical personnel in documented cases of anaphylaxis are alarmingly low. Non-medical caregivers are even less likely to feel comfortable “giving a needle,” though delays or failure to do so endanger children’s lives.

As a pediatric emergency medicine physician, I have seen plenty of examples of this. As a parent of a young child with severe food allergies, this terrifies me.

Given the rapid progression and life-threatening nature of anaphylactic reactions, all children with severe allergies should have access to epinephrine auto-injectors that are virtually foolproof, and can be easily administered by parents, babysitters, teenage camp counselors, daycare staff and classroom teachers, grandparents who can’t find their reading glasses, and even children themselves.

Last year, the Auvi-Q epinephrine auto-injector finally became available. Unlike the bulky six-inch-long Epipen, Auvi-Q provides simple audio instructions for administration and is small enough to fit comfortably in a pocket. Families prefer the Auvi-Q because it is easier to use and easier to carry. As a prescribing physician, I believe the Auvi-Q is more likely to be administered correctly by a wide range of caregivers, preventing severe and fatal anaphylactic reactions.

But as I recently learned while trying to replace my son’s expired Auvi-Q epinephrine auto-injectors, ensuring that your child has access to a potentially life-saving medication is anything but easy. Though my prescription plan covered the Auvi-Q in 2013, the pharmacist told me the Auvi-Q is now classified as “non-preferred,” and my claim had been rejected.

I tried to calculate the added cost to my insurer of filling a prescription for Auvi-Q rather than Epipen. The retail cost of the Auvi-Q twin pack is now about $30 higher than for the Epipen. My plan’s co-pay, however, is $50 higher. On the face of it, my insurer should be making a $20 profit each time a patient fills a script for Auvi-Q.

I have no first-hand knowledge of the financial basis of decisions made by my insurer, but a pharmaceutical sales representative told me that the key to successfully negotiating “preferred” status for a medication was not to provide a lower price than competitors, but to offer insurance companies a higher percentage reduction on the retail price.

“They increase their retail price, then we have to increase ours,” the sales representative explained, “so we can offer a better discount without decreasing our profits.”  It is a matter of public record that the retail price of the Epipen jumped to $240 per twin pack in 2013 from $86 per single unit in 2011. This increase preceded the release of the Auvi-Q, at a time when Epipen enjoyed a 97 percent market share and no real competition. In a free market, competition is generally expected to bring prices down, yet the opposite has been true for epinephrine auto-injectors since Auvi-Q became available in 2013.

Last year, the retail price of both Epipen and Auvi-Q was $240. An Epipen twin pack now costs, on average, $365; an Auvi-Q twin pack $400—increases of more than 150 percent in a single year.  Skyrocketing prices and preemptive formulary changes are both keeping life-saving medication out of people’s hands. Epinephrine auto-injectors need to be replaced every year. Co-pays for multiple devices add up quickly, but are nothing compared to the $800 retail cost now faced by families without prescription coverage when re-stocking a child’s home and school medications. Increasingly, some have no choice but to go without, forced to gamble on their children’s safety.

I don’t know whether the egregious price inflation of both products is the result of high-stakes negotiations between rival pharmaceutical firms and prescription management companies. What I do know is that this is not a game in which children with life-threatening allergies should be the pawns.

The Danger of Allergy Shaming

Chandler-Swink imageThe Danger of ‘Allergy Shaming’

Could a teen’s desire to “fit in” with the crowd become life-threatening? Certainly, if they have a severe food allergy, researchers report. A recent study revealed that 54 percent of surveyed students with allergies said they purposefully ingested a potentially unsafe food, while 42 percent were willing to eat a food labeled that it “may contain” the problematic allergen. A 2009 study found that only 40 percent of college undergrads with food allergies avoided their known allergens. And sadly, a 2014 study of 251 families found that 32 percent of surveyed children said they’d been bullied because of their food allergy at least once.

Is the “trendiness” of food sensitivities a detriment to people with true, life-threatening food allergies?

Rachel Grumman Bender
December 5, 2014
Yahoo Health

Oakland University sophomore Chandler Swink was supposed to be having the time of his life in college. Instead, the 19-year-old, who had a severe peanut allergy, died after visiting a friend’s apartment where peanut butter cookies were baked and Swink likely came into contact with the cookies. Despite injecting himself with an EpiPen and driving himself to the hospital, Swink went into anaphylactic shock and experienced an asthma attack and cardiac arrest. He would never recover.

His mom Nancy told The Oakland Press that Swink either ate food that came in contact with the cookies or he came into contact with someone who was contaminated by peanut butter residue.

No one can blame Swink for wanting to hang out with his friends like any other college student, even though it was risky for him to be near peanut products. It’s a chance that many adolescents with food allergies take for several reasons: Risk-taking behaviors peak in adolescence, which means teens are more likely to take risks with their health. Add this to the fact that teen years are ripe with the desire to fit in. This makes teens more likely to be embarrassed about their food allergy and less likely to tell people they’re experiencing symptoms or ask questions about foods that may be unsafe, Scott H. Sicherer, MD, professor of pediatrics and a researcher at the Jaffe Food Allergy Institute at Icahn School of Medicine at Mount Sinai in New York, tells Yahoo Health.

Sicherer’s research shows that fatal food-allergic reactions are the most common among adolescents and young adults. The study revealed that 54 percent of students surveyed said they purposefully ingested a potentially unsafe food, while 42 percent were willing to eat a food labeled that it “may contain” the problematic allergen. A 2009 study found that only 40 percent of college undergrads with food allergies avoided their known allergens.

“They would rather make believe that they don’t have it,” Myron Zitt, MD, a practicing allergist and past president of the American College of Allergy, Asthma and Immunology, tells Yahoo Health. “It makes them appear different from everyone else. If everyone is having peanut butter cookies, they may have one because their buddies are. They may think they’re immortal or that they’ve outgrown it. But with regard to nuts and shellfish allergies, you don’t outgrow it. 

It’s human nature to want to fit in. When you stand out, you’re more likely to get picked on—and that’s exactly what happens to many children and adolescents with food allergies, including Swink.

When Swink entered school as a child, his mom told The Oakland Press that school officials accommodated his allergy by making the district “peanut free” for him, but it came at a price: She said Swink was bullied for 12 years by both parents and students who blamed him for the peanut restrictions.

In general, the current attitude some people hold toward those with food allergies is a little cavalier, notes Zitt. Some may have become desensitized to how serious food allergies are since these days everyone seems to be coming out of the woodwork saying they have a food allergy, and it’s practically trendy to have a food sensitivity, such as to dairy or gluten. 

You’re not imaging things if it seems like food allergies are everywhere. There are 15 million Americans living with food allergies, according to the nonprofit organization Food Allergy Research and Education, or FARE, and one in 13 children in the U.S. — about two in every classroom — has a food allergy. And these allergies are on the rise, according to FARE.

Despite the prevalence, there is often a lack of tolerance and understanding about the dangers associated with a serious food allergy, which can result in “allergy shaming” or bullying. A 2014 study of 251 families found that 32 percent of surveyed children said they’d been bullied because of their food allergy at least once. Previous research shows that bullying puts kids at risk for anxiety, depression and thoughts of suicide. Understandably, compared with non-bullied children, bullied food-allergic children report higher anxiety levels and a lower quality of life.

Only half of the parents in the 2014 study knew that their child was being bullied over food allergies. On the flip side, children whose parents are aware of the bullying function better socially and emotionally. “When parents did something about the bullying beyond just talking to their child about it, the bullying decreased,” says Sicherer, who is also the author of “Food Allergies: A Complete Guide to Eating When Your Life Depends on It.” “The successful actions taken by parents mainly centered around intervening with the help of other adults, such as school personnel or, less frequently, the parents of the offending child.”

Educating friends about food allergies also helps. In his research, Sicherer and his colleagues asked teenagers what would make living with food allergies better for them. The teens didn’t ask for a nut-free place to eat in the school cafeteria or special treatment. Instead, nearly 70 percent said that educating their friends would make living with a food allergy easier.

“They wanted someone to teach their peers,” says Sicherer. “They don’t want to be different. If other kids understand what it is, they feel less different. If your friends know and understand [your food allergy], they may be more likely to say, ‘Don’t just take that cookie’ or ‘You have hives — do you need epinephrine?’ It goes from embarrassment or danger to understanding.”

Emergency Rooms Often Skip Epinephrine For Severe Allergies

emergency room signEmergency Rooms Often Skip Epinephrine For Severe Allergies

Another frightening study found that only half of internal medicine doctors know epinephrine should be the first treatment for a person experiencing anaphylaxis. And it’s even worse in the emergency room — up to 80 percent of the time, a person experiencing a severe allergic reaction isn't receiving epinephrine when they should. Fortunately, guidelines were recently issued by a joint task force of allergists in the Annals of Allergy, Asthma and Immunology, reinforcing that emergency rooms should be using epinephrine "first and fast" to treat a severe allergic reaction.

December 2, 2014
-from National Public Radio news-

Mom may be more up to speed on the right treatment for life-threatening allergic reactions than doctors, a study finds. Epinephrine should be the first and fastest choice for treatment.

An epinephrine injection can be life-saving for someone with a severe allergic reaction to a bee sting, a peanut or a piece of shrimp. But just half of internal medicine doctors know that epinephrine should be the first treatment, a recent study finds.

And it gets worse in the emergency room — up to 80 percent of the time, a person experiencing anaphylaxis , a severe allergic reaction, isn't receiving epinephrine when they should, another study found.

"I think moms are probably more aggressive than physicians are in using [epinephrine]," says Dr. Andrew Murphy, an allergist and member of the American Academy of Allergy, Asthma and Immunology.

That's why a joint task force of allergists published guidelines on Tuesday in the Annals of Allergy, Asthma and Immunology, reinforcing that emergency rooms should be using epinephrine "first and fast" to treat a severe allergic reaction.

Part of the problem may be that doctors use epinephrineto treat cardiac arrest, so it's "associated with really life-ending events and people get really nervous about it," says Murphy.

But epinephrine has proven to be safe and effective for treating severe allergic reactions, Murphy says.

Though the allergists have recommended epinephrine as a first treatment for years, "It's the first time that we've collaborated with emergency department specialists," says Dr. Stanley Fineman, past president of the American College of Allergy, Asthma and Immunology. He is not an author of the guidelines but has been involved with the organization's past work.

The guidelines are based on a review of previous studies documenting epinephrine use in the emergency department. Fineman says one goal is to make sure emergency department staff refer people who have had a severe reaction for appropriate follow-up care.

These specialists can "refer the patients to the allergist to make sure that the patient's triggers that caused the anaphylaxis get identified," says Fineman.

The precautions have become increasingly important, given that food and skin allergies are on the rise for children under 18, according to the Centers for Disease Control and Prevention.

So what should you do if you or your child shows up at the emergency room with a severe allergic reaction?

If you know you're having an allergic reaction and have an epinephrine auto-injector, use it, says Murphy. And tell the doctors your allergy history and what's happened to you.

"You just have to be a strong advocate for yourself," he says, such as, " 'I'm having anaphylaxis,' and that should get them to administer epinephrine."

Copyright 2014 NPR.

The information provided on this site is in no way intended to be a substitute for medical advice,
diagnosis, or treatment with a licensed physician.
The Allergy Advocacy Association is a 501(c)(3) non-profit, tax-exempt organization.
Copyright 2020 © Allergy Advocacy Association, Inc. All rights reserved.  Terms & Conditions