Time to End Food Allergy Tragedies
This call-to-action article was published in Allergic Living’s Spring 2012 edition. There are updates at the end.
Little Amarria was the wakeup call. We have the tool, the auto-injector, to stop the senseless allergy deaths like hers. Now we have to use it.
ON THE first day of school after Christmas of 2011, 7-year-old Amarria Johnson and her Grade 1 classmates in Richmond, Virginia bounced outside of Hopkins Road Elementary after lunch to play. You could usually hear Amarria before you saw her: she loved to sing, in church, for the video camera, in the car, at school. She would sing for anyone, and she had big plans to be a star on the Disney Channel.
For this first day back to school, Amarria’s mother had carefully rolled her daughter’s long hair in a bun. The girl was excited to be going back. “She loved everything,” her mother Laura Pendleton told Allergic Living. “The world was an awesome, innocent place.”
Then a child in the playground gave her a peanut. Amarria had always avoided the peanut butter and jam sandwiches that the school offered for lunch every day because she had an allergy to peanuts. But this time, for reasons no one knows, she popped the peanut into her mouth.
Amarria knew right away she was in trouble. She asked the teacher outside to help. That was exactly what she was supposed to do. But then the system failed her.
The teacher walked Amarria to the school’s health clinic, where an aide searched for an epinephrine auto-injector with Amarria’s name on it. An auto-injector shoots epinephrine, also known as adrenaline, into the body. The drug can stop a severe allergic reaction outright or buy enough time for paramedics to arrive. Amarria desperately needed that shot of life; in the minutes after she arrived at the clinic, she was struggling to breathe. But the clinic did not appear to have an auto-injector prescribed for Amarria.
A Child Runs Out of Breath
Over the next few minutes, the girl ran out of breath, right there in the clinic. Just before 2:30 p.m., the school called 911, but by the time firefighters and police arrived, Amarria’s heart was failing. The rescuers tried CPR; they tried to restart her heart with a defibrillator. They rushed her to Chippenham Hospital, but it was too late. Amarria was pronounced dead shortly after she arrived. The cause of death: anaphylaxis and cardiac arrest.
It is such a senseless, heartbreaking loss of a little girl so full of life. But beyond the tragedy, this disturbing issue has emerged: there were likely auto-injectors prescribed to other students in the Hopkins Road Elementary clinic. (Allergic Living has learned this was likely the case, though the school board declines to comment on specifics.) If an auto-injector was there, however, the aide was not allowed to use it. Why?
“Many of our students [in Chesterfied County] have EpiPens at school,” acknowledged Shawn Smith, the board’s spokesman. “It’s illegal to give a prescription drug to someone else,” he said.
The staff at the county’s public schools are instructed that they are only allowed to use an epinephrine auto-injector if it is specifically prescribed by a doctor for the child in question and if the school has the child’s written action plan for allergy emergencies. “Absent those two,” Smith said, “we’re unable to carry out the doctor’s [verbal] orders.”
IT SEEMS unthinkable not to give a child life-saving medicine, and yet most counties and states are vulnerable to such a situation. They don’t have to be.
Amarria should be the last child to die in America of anaphylaxis at school. This isn’t some far-out dream that requires a medical breakthrough in the distant future. It can happen right now, with existing technology. People with life-threatening allergies, parents and the staff at school all need to know that these deaths can be prevented. Amarria likely would be alive today if someone had used an epinephrine auto-injector to save her life.
It’s an easy procedure: all you have to do is pull off the safety cap, ram the device’s tip against the outside of the person’s upper thigh, and hold it there for 10 seconds. The EpiPen and other brands are even designed to go through clothes. Although epinephrine is a drug, numerous scientific studies have shown that it is highly safe to use. What is not safe is withholding the epinephrine, or putting off giving the shot. That can be deadly, as it was for Amarria.
What’s Standing in the Way?
With anaphylaxis, we know the prompt use of epinephrine in the first minutes of an attack is literally a shot of life. So what’s standing in the way?
Three things: First, you need to have an auto-injector available. Second, you need to know when to use it. And third, you need to take a breath and just use it when that moment arrives.
It wasn’t only Amarria who didn’t have her own auto-injector at school that day. Canadian researchers surveyed adults with food allergies and parents of allergic children to discover that only about half of them carried an epinephrine auto-injector. Since this condition can rapidly incapacitate a child or an adult, the patient, parents, friends, teachers or colleagues, and even the broader community need to know both what anaphylaxis looks like – and what to do. They need to know that the auto-injector is the first line of defense – not an antihistamine, not waiting to see what happens.
Yet people hesitate before using the device. Some are phobic about the needle; an estimated 10 per cent of the population admits to a fear of needles. “A lot of people are afraid of the needle,” says Gina Clowes, founder of Allergymoms.com and a parenting coach who has counseled hundreds of parents of allergic kids.
But, she notes, “if there’s anything worse than injecting a child, it’s not having the medicine. When it hits the leg, it’s just a click.”
A Mere 27% Used An Auto-Injector
To gain insight into the resistance to using the auto-injector, allergist and anaphylaxis expert Dr. Estelle Simons and Harvard epidemiologist Dr. Carlos Carmago conducted a survey in 2009 of 1,885 people who had suffered anaphylaxis. The symptoms must have been scary, yet only 27 per cent of the people who experienced anaphylaxis used an auto-injector; 73 percent, or almost 1,400 of the patients, did not.
Why? Among the reasons given, 38 percent opted for an antihistamine; 28 per cent said they didn’t have a doctor’s prescription; while 13 percent perceived their episode to be “mild” anaphylaxis. Clearly, many still do not know the facts about this life-saving tool.
People are also wary of taking a drug, and especially giving one to someone else’s child. Is this concern well-founded? The leading allergists in the United States say the real danger lies in waiting to give the drug, not in giving it.
“Failure to administer epinephrine early in the course of treatment has been repeatedly implicated in anaphylaxis fatalities,” say the new allergy practice guidelines issued by the National Institute of Allergy and Infectious Diseases. Sure, the report says epinephrine can cause anxiety, fear, restlessness, headache, dizziness, palpitations, pallor or tremor. Rarely, it can lead to heart trouble, but that’s not likely unless you overdose, which won’t happen if you use an auto-injector.
Now compare those side effects with the risk of waiting: One study looked at 13 fatal and near-fatal cases of anaphylaxis. Of the seven who survived in this group, six had taken epinephrine within 30 minutes of eating the food allergen.
The upshot: epinephrine is not foolproof, but it’s your best chance of surviving if you are succumbing to anaphylactic shock. “It’s a safe medication,” says Dr. Scott Sicherer, chief of allergy and immunology in the pediatrics department of New York’s Mount Sinai School of Medicine. “Even if you accidentally use it, that’s OK.”
Next page: A critical need for ‘stock’ auto-injectors