A proposed national law would put life saving epinephrine in your childs school
In January, Ammaria Johnson, a first-grader in Chesterfield County, Virginia, didn’t feel right after eating a peanut her classmate gave her during recess. She went to the school clinic with hives and shortness of breath, harbingers of anaphylaxis. The school called 911, but by the time emergency crews arrived, Ammaria was already in cardiac arrest. She died shortly afterward.
In December 2010, Chicago seventh-grader Katelyn Carlson collapsed after she ate Chinese food during a class holiday party. The food contained traces of peanuts, even though her teacher had reportedly asked the restaurant not to use peanuts. Since Katelyn’s peanut allergy had not been severe in the past, her 504 health plan had called for administering Benadryl, an antihistamine. Staff followed the plan and then called 911. Katelyn was rushed from school to the hospital, where she died of anaphylaxis.
Both Ammaria and Katelyn might still be alive today if they’d been given a simple epinephrine injection at school.
Epinephrine (often known by the injector’s brand name, EpiPen) provides an adrenaline jolt to the heart, opening airways and giving the individual time to get to the emergency room for treatment before anaphylaxis sets in. But in most schools, students can be injected with an EpiPen only if three things occur: (1) a physician has prescribed the medication, (2) the student’s emergency health plan specifies when to administer it, and (3) the family has provided the school (or the student) with an EpiPen. If a student doesn't have prescribed epinephrine at the school, most schools legally cannot administer the life-saving medication, even if the student is going into anaphylactic shock as the nurse looks on.
“When someone is having an anaphylactic reaction, the one recommendation for first-line treatment is epinephrine. It can make the difference between life and death,” says Maria Acebal, CEO of the Food Allergy & Anaphylaxis Network. “What makes this so chilling to me is that if the school nurse’s office was like most nurse’s offices around the country, there was an EpiPen there. It just didn’t have Ammaria’s or Katelyn’s name on it.”
It there’s a positive outcome to the tragic deaths of Ammaria and Katelyn, it’s that parents and food allergy advocates are now pushing hard for states to allow schools to stock epinephrine auto-injectors for general use during anaphylaxis. The epinephrine would not be prescribed specifically to a single student but could be used for any student having an anaphylactic reaction.
“Having multiple EpiPens that have other children’s names on them doesn’t help a child who is at risk,” Acebal says.
It makes sense to stock epinephrine for general use. Up to 24 percent of epinephrine administrations in schools involve students with no previously known allergy. Many school-age children may not even know they have a food allergy.
Odds of severe food allergy progressively increase with age, peaking at ages 14 to 17.
Consider these somber statistics:
- 8 percent of U.S. children have a food allergy. Of those, 39 percent have a history of severe reactions and 30 percent have multiple food allergies.
- 16 percent to 18 percent of children with food allergies have had a reaction in school.
- 25 percent of children with peanut allergies experienced their first reaction in school.
- 19 percent of severe allergic reactions requiring epinephrine occurred outside the school building on the playground, traveling to and from school, or on field trips.
Then consider this: Most severe anaphylactic reactions can be halted with an EpiPen, a simple devise that a child can learn to use.
New proposed federal legislation addresses this very issue. The School Access to Emergency Epinephrine Act (S. 1884/HR. 3627) would allow states to require schools to maintain an easily accessible supply of epinephrine and permit trained authorized personnel to administer epinephrine to any student believed to be having an anaphylactic reaction.
When in doubt, inject, advises Scott H. Sicherer, MD, professor of pediatrics and a researcher at the Jaffe Food Allergy Institute at Mount Sinai in New York. Sicherer is author of Understanding and Managing Your Child’s Food Allergies (Johns Hopkins Press).
“Epinephrine does just about everything you need to reverse the more severe aspects of an anaphylactic reaction,” Sicherer says. “It makes the heart beat stronger and faster to improve blood flow. It makes blood vessels ‘tighter’ so blood can circulate more easily. It makes breathing tubes relax and stops the spasms that make it hard for air to move through the lungs. It reduces swelling, for example, in the throat.”
But Sicherer cautions: “While it can do all of these things to help, it is not foolproof. You need to be careful to avoid an anaphylactic reaction in the first place because you can’t 100 percent depend upon the epinephrine.”
Giving epinephrine to someone who may not absolutely need it does no real harm.
“The side effects are trivial,” Sicherer says. “It may make the heart beat fast, may cause a slight headache, may make the skin look pinker or sometimes more pale and it may cause some jitteriness. But all of these effects are minor and fade away.”
Some physicians have been reluctant to write a non-student-specific prescription for the medication because of liability issues. That’s why the federal bill would require states to have “Good Samaritan” laws that give liability protection to physicians who prescribe the general-use epinephrine and to the school employees who administer it.
The federal bill would not actually require emergency epinephrine in each school. Rather, the bill provides financial incentives to states to enact their own legislation. States that require schools to stock emergency epinephrine would be given preference for asthma-related grants administered by the Department of Health and Human Services, although these asthma-education grants are not currently funded.
“It’s a carrot approach, not a stick approach,” Acebal says. She adds that the law is structured similarly to self-carry legislation in 2004 that gave funding preference to states that permitted students to carry and self-administer asthma and anaphylaxis medications in schools.
All 50 states now allow students to self-carry asthma medications, and all but two states (New York and Rhode Island) have laws permitting students to self-carry epinephrine. It’s still important for older children to carry their own epinephrine, antihistamine or asthma medications, parents and physicians say, because kids might be far from the nurse’s office when they experience an anaphylactic reaction. In such situations, every minute counts.
Only a handful of states, including Illinois, Georgia, Kansas, Massachusetts and Missouri, have laws related to general-use emergency epinephrine. Some permit any trained school personnel to administer the life-saving medicine but some specify that only school nurses can administer it. Many schools, however, do not have full-time nurses on site, leaving students in a life-or-death lurch if the nurse is not available.
In Virginia, a law was passed after Ammaria’s death that permits the school nurse or a school board employee to administer epinephrine to any student believed to be having an anaphylactic reaction.
In Illinois, legislation passed after Katelyn’s death lets the school nurse administer epinephrine to any student believed to be having an anaphylactic reaction.
“The national law we’re advocating says that epinephrine can be used by a school nurse but if a school nurse is not available then a nurse-designee–someone who has been trained in food allergy safety—would be able to administer it,” Acebal says. She recommends that food-allergy safety training and epinephrine training be part of the back-to-school teacher agenda each fall. “Ideally we’d like to see every staff member that supervises a food-allergic child have this training,” she says.
The emergency epinephrine should be kept in an easily accessible place. “It should not be locked up,” Acebal says. “You can’t be having to search for a key in a situation where minutes count.”
Sicherer also supports giving trained nurse-designees the ability to administer epinephrine.
“Personally, I prefer a medical professional to identify and treat anaphylaxis if one is available and if there is a choice,” he says. “However, I routinely teach parents to recognize and treat anaphylaxis for care of their children and so there is no reason why a delegate in a school cannot do the same. Therefore, if a medical professional or school nurse is not available, it is fine for anyone who has been taught to give this life-saving medication.”
Students who are diagnosed with food allergies should keep their own prescribed anaphylaxis medications in the nurse’s office, in addition to the school’s stash of emergency epinephrine, Sicherer says. EpiPens also need to be replaced upon their expiration date, which is typically after one year.
Some school districts are concerned about the financial burden of buying epinephrine auto-injectors for each school. EpiPens generally cost about $112 each. The manufacturer, Dey Pharma, currently offers EpiPens at a 50 percent discount to schools.
Mary Lenahan and her daughter Alex Simko have been actively advocating for emergency epinephrine legislation for years. They first started in Illinois and are now working on the federal level. Alex, 17, has grown used to speaking in front of politicians. She’s testified in support of the Illinois legislation, the development of Illinois school food allergy guidelines and the federal emergency epinephrine legislation.
Alex was diagnosed with life-threatening allergies to peanuts, nuts, egg, corn and beef when she was two years old. She later outgrew her corn and beef allergies.
“The EpiPen saved Alex’s life at the age of 4,” says Lenahan, who leads the MOCHA Fox Valley support group in Illinois. “She almost didn’t make it. If I hadn’t had the EpiPen, I don’t even want to think about what might have happened to her.”
“In Illinois, the emergency epinephrine bill passed unanimously. But sadly, it took the tragic death of Katelyn Carlson to bring this issue to the attention of the general public and legislators,” Lenahan says. “This is a life-or-death situation for some of these children. That’s why the EpiPen legislation is so very important.”
Every allergic reaction can be different in terms of symptoms and severity.
“The first reaction can be somewhat minor. The second reaction can be maybe just a little bit worse. The third can be almost fatal or fatal,” Lenahan says. “And anaphylaxis can happen in a matter of minutes.”
Cindi Sodolski knows that each minute can count. Her son Nate is severely allergic to peanuts, egg and dairy. Two years ago, when Nate was in kindergarten, his Chicago school ordered Subway sandwiches for an end-of-school celebration outside on the school grounds.
Sodolski diligently went to Subway, asked the staff to don clean gloves and make a sandwich without cheese. She watched them make the sandwich, wrap it and put it in the plastic bag. She brought the sandwich to her son at school and stayed for the celebration.
But then her son’s friend ran up to her and said that something was wrong with Nate. Nate wasn’t talking. Tears were streaming down his face. He was having trouble breathing.
Although Sodolski had watched the Subway staff make and wrap the sandwich, they had handed her the wrong bag. It contained a sandwich with cheese and Nate had taken one bite.
Luckily, Sodolski was at the school and she was carrying an EpiPen in her purse. She quickly administered the medication and Nate’s reaction subsided as she rushed him to the hospital.
“It was ironic that I happened to be in the classroom that day and I was right next to him. If I hadn’t been there, it would have much worse…I don’t even want to imagine it,” says Sodolski, who has twice gone into anaphylaxis herself. “The reaction happens so fast, you can’t imagine.”
“Every minute counts,” she continues. “By the time a teacher figures out that a student is truly having a reaction, by the time the kid goes to the nurse’s office and by the time the nurse administers the EpiPen, the minutes are ticking away.”
Defibrillators are now common in airports, schools and office buildings. EpiPens should be, too, she asserts. “I think they should be in every school. Something that is so simple, why wouldn’t they be in every school?”
“Things are going to change,” she adds. “They have to. There are too many kids with food allergies.”