Time to End Food Allergy Tragedies
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 EpiPen) 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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