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.”
TO PREVENT more tragedies, people need to get past the fear of needles and drugs and learn how to use the auto-injector. But having an injector at the ready is still a problem in too many places. In most states, schools won’t administer a prescription drug like epinephrine unless it’s prescribed by a doctor for a specific child.
When 13-year-old Katelyn Carlson of Chicago died after she inadvertently ate peanut in food at a class party in 2010, she did not have an auto-injector at school. Her death led to an Illinois law that encourages schools to keep an unprescribed auto-injector and to allow trained staff to use it in an emergency. In January 2012, the Chicago Public Schools board announced that all of its schools will now have stock auto-injectors on hand in public schools.
At least four other states, including Virginia where Amarria died, are working toward similar laws; a bill before the New York Senate would even require educator trainees to know how to use an epinephrine auto-injector before they receive certification as teachers. [Editor’s note: this was as of 2012, see update at end of article.]
Now politicians in Washington are giving the rest of the country a nudge in the same direction. A proposed law would reward states with preferred access to federal grant money if they require that schools have a supply of epinephrine auto-injectors and train staff to administer the life-saving medication.
The bill, called the School Access to Emergency Epinephrine Act, is backed by Republicans and Democrats and gaining support. Since trained staff could use the school’s “stock” auto-injector if they believe a child is having an anaphylactic reaction, this could save lives. Consider that children often suffer their first allergic reaction at school; studies show that one-quarter of reactions reported at school happened to children who had not yet been diagnosed with food allergies.
The move to having stock auto-injectors makes perfect sense. Think of it this way: If you see a teacher collapse in the cafeteria and complain of a severe crushing chest pain, someone would get out the automated external defibrillator or AED. Would they ask first whether the teacher had a note from the doctor? So why not take the same approach when child with an allergy eats a peanut and starts struggling for breath?
That might have saved little Amarria. One thing is clear about her sad story: she didn’t have an auto-injector at school. When Amarria started Grade 1 at Hopkins Road Elementary, her mother Laura says she took her auto-injector, along with the child’s action plan for asthma and allergies, to the school clinic.
The mother says she remembers what the woman in the clinic said: “We have everything we need for Amarria. You can take it [the auto-injector] home just in case you need it.” Laura says she trusted the school employee; she sent her daughter to school without her auto-injector. (The spokesman for the school declined to comment on Laura’s account.)
Laura was at her job as a practical nurse at a senior citizens’ home on January 2 when the call came: “Amarria had a peanut and her tongue is swelling,” someone in the school clinic said. The next thing Laura says she heard was: “Can someone come and get her?”
“I said call 911!” Laura raced to the hospital, but her daughter was dead by the time she got there. The rest is a blur. A few days later, a group of supporters gathered in front of Amarria’s home to hold an evening vigil. “It’s a hurting thing,” Amarria’s grandfather, Leroy Green, told reporters. “We need to educate our schools. We need to educate our parents. This could happen again.”
IF THE stock epinephrine bill passes, it will be a big step forward. But school staff also must be trained. “We need people who are knowledgeable on when and how to use the auto-injector,” says Maria Acebal, board member of the allergy organization FARE, which is leading the lobby for the bill.
Teachers, like others, may struggle with the fear of needles and drugs – even though medical experts say the auto-injected epinephrine is safe. “Unless the school gives them the information they need,” says Acebal, “it’s a very scary situation for them.” Sicherer thinks it shouldn’t be hard to show the teachers how to recognize a severe allergic reaction and treat it with a simple injection: “If a parent can learn it, any adult can learn it, and adults in charge of our children should learn it.”
Yet one study in 2000 of 101 families with kids with food allergies showed that only about half of them owned non-expired auto-injectors. It also revealed that only 32 per cent of the parents knew how to handle the device properly.
“You are modeling behavior for your children,” says Acebal. If a parent is scared of the auto-injector, what does that say to the child? Parents need to work with their child’s doctor on a plan to avoid the allergen, recognize symptoms, and treat the reaction. This plan then must be shared with the school.
Why Stop at Schools?
The campaign to make epinephrine more widely available and stop the tragedies has naturally begun with the schools. But why stop there? We can prevent even more needless deaths and traumatic hospital visits if we start viewing the epinephrine auto-injector like any other rescue device. The automated external defibrillator delivers a jolt that can save a person from cardiac arrest. AEDs are all over the place – in government and corporate offices, shopping centers, airports, sports stadiums and movie theaters.
Why not put auto-injected epinephrine devices right beside them? It makes sense to anyone who worries that a person might collapse at a movie theater or in a restaurant only because they forgot their auto-injector and one wasn’t available. Yet if you suggest that possibility to employers or restaurant managers, you’ll probably hear the following objection: It’s against the law to give someone else an injection of a prescription drug unless you are specifically authorized to do so.
Is that true? Do state laws actually prevent you from giving a shot of epinephrine to save a life? Chris Weiss doesn’t agree. “I’ve never seen a law that backs that up,” says the former vice-president of government relations for FAAN (now known as FARE). “Epinephrine is a benign medication. Why would someone be sued for giving epinephrine? That’s like being held liable for giving someone oxygen.” In fact, there are Good Samaritan state laws that would protect the rescuer.
Weiss notes that some states already allow lifeguards, tour guides, park rangers and camp counselors to store auto-injectors and give the shot of life to anyone suffering an anaphylactic reaction. However, this is only true in some states. “It’s a crapshoot,” says Weiss.
So will we see auto-injectors on the wall alongside the AEDs? Some practical issues need to be resolved first: Where would they be kept? How will an organization make sure they’re replaced every year to be certain the medicine hasn’t expired? Who will be authorized to use them, and how will those individuals be trained? It will take a while, but “I think it will happen,” says Weiss.
In the meantime, Bill 1107 in the Virginia legislature just awaits the governor’s signature to become law. [*See UPDATE below.] This bill would oblige all the state’s schools to stock two auto-injectors, and it would allow trained school employees to give epinephrine without fear of being sued. Perhaps it’s coincidence but the number of the bill matches Amarria’s birthday, November 7, the day she opened the gift of an MP3 player and sang all day.
“She was robbed of her life,” says Laura, who cries every morning and wonders when she’ll be able to pull herself together enough to go back to work. Laura doesn’t sleep much these days, but she does see one ray of hope. Maybe the new legislation could be called Amarria’s Law. “The least they can do is name it after her,” she says, choking back tears. “It would give me a little comfort to know that her death was not in vain.”
*UPDATE: On April 27, 2012, Virginia Governor Robert F. McDonnell signed legislation, dubbed Amarria’s Law, to establish policies requiring schools to have epinephrine on hand for a school nurse or trained staff to administer in case of an allergy emergency. Laura Pendleton (Amarria’s mother) was on hand to witness and support the passing of the legislation.
UPDATE 2: More states have now passed stock epinephrine laws: read more here. And on November 13, 2013, the President signed into law a federal act that provides incentives to states that enact state stock epinephrine laws. Read more here.
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