Editor’s note: This is the second of a two-part series about food allergies and the efforts by public health agencies, schools, legislators and parents to make it easier and safer for allergic individuals to manage risks. To read Part one: “Food allergies threaten lives daily; research gaps and mis information complicate issue” click here.
At first, Cathy Owens, a nurse at Murrieta Valley High School in California, thought the student was acting out when he started grabbing his neck, gasping and saying he couldn’t breathe. She even playfully chided him for being so dramatic. But when she realized he was suffering a respiratory crisis, she told the health tech to call 911. She then assured the student, who she thought might be having a panic attack, that help would soon be there.
But when 911 didn’t arrive as soon as expected, and when she saw he was no longer able to exchange air, she realized he was likely suffering from a severe allergic anaphylactic attack from something he had eaten or perhaps from an insect bite or sting.
With only seconds to spare, the cause of his distress wasn’t important. What was important was that she do something about it immediately. She quickly grabbed an EpiPen and administered a shot in his outer thigh.
Owens was able to take emergency action even though the student didn’t have a history of allergies and therefore had no EpiPens in the office specifically prescribed for him. She knew that the EpiPen she had used had another student’s name on it, but she used it anyway — and he lived.
The epinephrine did what it was supposed to do when someone suffers from an allergy attack so severe that they can no longer breathe. It relaxed the muscles around the student’s airways and tightened blood vessels to maintain breathing and keep his heart pumping.
When the emergency responders showed up, they asked who had given him the shot.
Owens said that at first she just wanted to blend into the background. But when she stepped forward and said she had been the one, she was more than relieved to be told she had most likely saved the student’s life.
Yes, she had violated procedure, but, yes, the boy was still alive.
The incident, which was featured in an article in the Sacramento Bee newspaper, helped open the door to public awareness about how important it is for schools to have the life-saving EpiPens on hand for all students — not just the ones whose doctors have prescribed them for them.
That’s important, Owens said, because according to the federal Centers for Disease Control and Prevention, 20 percent to 25 percent of students have their first allergic reaction in school — especially important to consider since they spend nearly half their waking hours in school, out of their parents’ care.
In other words, like the student Owens tended to in 1997, many young people and their parents don’t even know they have a severe allergy to certain foods or insect stings or bites.
The incident galvanized Owens to lobby for state laws for schools to have standing orders for so-called stock epinephrine, which are not prescribed for a specific student, but available as emergency first aid for any student who needs it in any school.
As Owens experienced first hand, it can be a matter of life and death.
“Because anaphylaxis can lead to death or permanent damage within minutes, timely administration of epinephrine is critical,” according to the New York City Department of Education’s comprehensive plan to address the identification and treatment of food allergies in the city’s schools.
“The risk of death from untreated anaphylaxis far outweighs the risk of administering epinephrine, even if administered inadvertently to someone not having an anaphylactic reaction,” the education department plan states.
Signs that someone is experiencing an anaphylactic attack may include: hives, itching, difficulty swallowing, coughing, difficulty breathing, nausea, abdominal pain, change in mental status, drop in blood pressure or shock. Most anaphylactic reactions in schools are due to food allergies, although medications, stinging insects, or latex can also result in anaphylaxis.
State and federal laws
Owens said that in 2001, California initially passed a “volunteer” stock epinephrine program under which school districts could choose whether to stock generic epinephrine for students who don’t have their own prescriptions. The bill was good, Owens said, but it didn’t protect all the children in the state because in the case where schools chose not to stock the emergency education, students in those schools were still at risk.
In 2014, the state passed a bill resulting in a law requires all schools to have stock epinephrine on hand. But it has not been without its challenges, said Owens, because it still requires a physician’s order for the school to get the epinephrine auto-injects, and some districts have not been able to find a physician willing to sign the orders.
In cases like this, the schools contact her, and she has almost always been able to help find a physician who will sign an order for them.
“We are close to having all of our schools having stock EpiPens,” she said.
For Owens, it’s a win-win situation because if the student has an allergic reaction, the likelihood of the child dying at school, or in other places where the stock EpiPens are on hand, is greatly diminished.
“And there’s little or no harm in giving it,” she said, “because if it’s not needed, there’s no downside.”
Most people using EpiPens experience no serious side effects. However, a person should immediately tell his or her doctor if any of these rare, but very serious, side effects should occur after an epinephrine injection: chest pain, fainting, vision changes, seizures or confusion. Less severe side effects can be fast or pounding heartbeat, nervousness, sweating, nausea, vomiting, trouble breathing, headache, dizziness, anxiety, shakiness, or pale skin. If these should persist or worsen, the person should promptly notify his or her doctor or pharmacist.
As for cost, Owens said with Mylan’s EpiPen4schools’ program, which provides four free stock EpiPens — and replacements — for each school site at no financial cost to the schools.
“So I would find it hard to argue against having them,” she said.
In 2016, the state took another step forward, passing a bill that would allow places such as restaurants, after-school programs, and preschools to keep stock EpiPens if they choose to do so.
Currently, 12 states have requirements for schools to have EpiPens, and many states allow schools to keep them on hand, which leaves it up to each school to make a decision on this.
In 2013, a federal law, the School Access to Emergency Epinehphrine Act, was signed into law. It allows schools to maintain supplies of undesignated epinephrine. The Act not only protects children whose epinephrine is not immediately accessible during an emergency, but also those who do not have an EpiPen prescription.
Out in the marketplace, a two-pack of EpiPens costs from $100 to $200.
In the Murrieta School District, any child with food allergies can carry an EpiPen — as long as the parent and physician agrees. However, the school district prefers that the EpiPens in each school’s health office rather than in students’ backpacks or desks.
District officials also prefer to have a second EpiPen in the health office for children who have prescriptions because the times of greatest risk are when they are out of the classroom for lunch, recess or other reasons. In that case, their backpack would be locked up in the classroom so trying to get a key, find the backpack, and locate the EpiPen can “cost precious moments we might not have,” said Owens.
In New York City’s Department of Education plan, students are permitted to carry an EpiPen as prescribed by his or her medical provider, if the student is determined to be self-directed and able to self-administer medication.
Some school districts and after-school programs veer away from stocking generic epinephrine injection pens because of fears about being sued should something go wrong.
But, according to information from www.healthy-kids.info, an attorney providing legal advice to the Quincy Public School District in Massachusetts, which was concerned about the increasing numbers of students with insect and food allergies, said that “the potential liability from refusing to administer the EpiPen far exceeds the liability from administering the Epi Pen … refusal to administer the EpiPen would amount to a breach of care owed to the child.”
He also said some state laws provide for immunity from liability for those rendering emergency medical care, which is often referred to as a Good Samaritan Act.
So much variability
Elle Goldberg, founder of www.healthy-kids.info, which provides comprehensive coordinated care and educational planning for students with chronic health conditions, said that although things have improved, it’s important to remember is how variable the landscape still is.
“There are many wonderful school nurses and many people supportive of having stock EpiPens in the schools, but there are still places where fear drives the resistance,” she said.
In the late 1980s, Quincy (MA) Public School District took a bold proactive step to keep its children safe from succumbing to anaphylactic shock by adopting a policy that included a signed memoranda of understanding with the teachers’ association and custodians’ union, which made using an EpiPen a specific job duty and responsibility within the scope of employment of all staff members.
“This reassured them that they were fully indemnified against liability,” said Goldberg.
Director of Nursing Jeanne Martin said this month that the basic policy has been maintained over all of these years.
“We still stock EpiPens,” she said. “The medical director has a standing order to cover us.”
When asked if the policy has benefitted the school district and its students, her answer was simple and to the point.
“EpiPens save lives,” she said.
In New York City, the Department of Education developed a comprehensive plan to address the identification and treatment of food allergies in the city’s schools. The plan calls for these actions:
- Requires all school nurses to be trained in the assessment, management, and treatment of severe allergy and anaphylaxis, and to play a primary role in the case management of students at risk for anaphylaxis.
- Permits the administration of epinephrine by EpiPen by all nurses working in New York City public schools to any student having an anaphylactic reaction pursuant to the non-patient specific standing order.
- Requires that at least two non-nursing school staff personnel be trained to administer an EpiPen in any school where there is a student who has a medical order on file for the use of an EpiPen. The principal is responsible for ensuring that the appropriate staff are trained for the identified student in accordance with this policy, and that there are trained staff available at all times when the identified student is in the building.
- Permits a student to carry an EpiPen as prescribed by his or her medical provider, if that student is determined to be self-directed and able to self-administer medication.
The plan points out that injection of epinephrine is the treatment of choice for anaphylaxis. And because anaphylaxis can lead to death or permanent damage within minutes, timely administration of epinephrine is critical.
“The risk of death from untreated anaphylaxis far outweighs the risk of administering epinephrine, even if administered inadvertently to someone not having an anaphylactic reaction,” says the plan.
For students not capable of self-administering an epinephrine injection, administering it is the responsibility of the school nurse and trained staff. Principals must ensure that the school’s internal communication system can summon those staff members who have been trained to the site of the emergency.
As for when the students are outside of their classrooms, other staff to be trained would include cafeteria supervisors, health aides, paraprofessionals and playground supervisors. Follow-up training is part of the plan.
But as Goldberg pointed out, it’s a varied landscape. In Colorado, for example, the Summit School District’s school board in 2014 voted unanimously against having its schools stock non-prescribed epinephrine pens. Of the 17 nurses and health assistants there, 12 voted against it.
At the school board meeting, school nurse Karen Tosetti-Scott said that epinephrine can cause serious heart problems or be fatal if improperly injected or given to people with certain conditions or taking certain medications.
She said the average response time for an ambulance was seven to 15 minutes and that the school’s paraprofessionals don’t feel comfortable diagnosing anaphylaxis or administering epinephrine.
The district’s current policy is that unless a student has a health plan on file with a prescription for an epinephrine pen and a doctor’s recommendation, school health providers can’t give the medication.
For Jen Anderson, a mom who told the school board members that her 8-year-old son knows how to use his EpiPen and that anaphylaxis is not difficult to diagnose, the school board’s vote came as a keen disappointment.
“They’re afraid of epinephrine,” she said. “That’s what really scares me.”
Still more work to be done
Goldberg said that while she has seen some very encouraging signs, there is still work to do. For parents, it takes “organized vigilance,” which includes staying informed about what their children’s school policies are.
“You don’t know if a policy the school has adopted persists from year to year,” she said, pointing out that a new superintendent can make changes to existing policy. “People can’t take it for granted that a previous policy is still in place.”
When looking at this issue today, she laments that in some schools, it’s no better than it was 30 years ago when she started on her campaign to keep kids safe at school. Even so, she said that working toward that goal is not as difficult as it was in the 1990s.
California school nurse Owens said that because food allergies have dramatically increased in recent years, “I think we are all much more aware that ‘food can kill.’
“But, there is still is much more awareness that needs to be done and that can be done,” she said. “We do not have stock epinephrine in all states. And food is still often a ‘reward’ in a classroom with little to no thought about food allergies.
“I think we have done a good job, but we still have much more work to do.”
How many have died?
Statistics are hard to come by on anaphylaxis, partly because so many lives are saved thanks to epinephrine. But, according to the U.S. Food and Drug Administration, each year in the U.S. it is estimated that anaphylaxis to food results in:
- 30,000 emergency room visits;
- 2,000 hospitalizations; and
- 150 deaths.
Also, according to FDA, “Prompt administration of epinephrine by autoinjector (e.g., EpiPen) during early symptoms of anaphylaxis may help prevent these serious consequences.
For a list of some of the young people who have died from food allergies from 1986 to 2017 — and details of their stories — visit the NoNutsMomsGroup blog.
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