All About Epinephrine: A Life-Saver for Celiac School Kids
Social Dynamics and Awareness
When the eighth grade boy arrived in the school nurse’s office, his eyes were watering and he couldn’t stop sneezing, recalls Kathy Donohue, RN. The boy attributed his symptoms to seasonal allergies, which had been acting up. With his dad en route to pick him up, Donohue sent the student to retrieve his backpack from his locker. By the time he returned a few minutes later, his lips had ballooned to three times their size, he was covered in hives and he was grabbing at his throat. Donohue immediately checked the school’s procedure for administering medicine to students with undiagnosed allergies. Then she shot epinephrine into his right thigh while a school administrator called 911.
“He was changing in front of my eyes. In just three minutes, he was a different-looking kid,” says Donohue, the full-time nurse at Clarendon Hills Middle School in Clarendon Hills, Illinois. “Had I not given him the EpiPen, what would he have looked like three minutes after that?”
The student quickly improved after receiving the dose of epinephrine.
“I was grateful I had the EpiPen to help him,” Donohue says. “If I hadn’t had that, I don’t know that 911 would have gotten here quickly enough.”
A visit to an allergist following the anaphylactic reaction confirmed that the student had a tree nut allergy. On the day of the reaction, the boy had forgotten to bring a snack, so he had eaten a friend’s granola bar about an hour before he showed up in Donohue’s office.
If this had happened just a year earlier, Donohue wouldn’t have had emergency epinephrine in her office or the legal right to administer it without a prescription.
Advocacy for Access
In 2012, 7-year-old Amarria Johnson wasn’t as lucky. After eating a peanut on the school playground in Richmond, Virginia, Amarria started experiencing shortness of breath and hives. She asked a teacher for help and was taken to the school clinic. But because the school didn’t have an epinephrine auto-injector prescribed for her, the staff could only call 911. By the time emergency responders took Amarria to the hospital, it was too late for the little girl.
Chicago teen Katelyn Carlson suffered a similar fate. In December 2010, Katelyn had an anaphylactic reaction after unknowingly ingesting peanut at a school party. The school gave her Benadryl, called 911 and rushed her to the hospital. The seventh grader died shortly afterward.
It’s likely that both reactions could have been halted with the prompt injection of epinephrine, the medication used to treat anaphylaxis, a life-threatening allergic reaction to food, insect bites or stings, medication, latex or other allergens. Such tragic deaths have been a rallying call for advocates to push for local and national legislation to improve access to epinephrine in schools.
This year, the U.S. House of Representatives passed The School Access to Emergency Epinephrine Act, a federal bill that encourages all states to allow schools to stock emergency epinephrine. The Senate is now considering the bill (S. 1053). The proposed legislation encourages states to adopt laws requiring schools to stock epinephrine auto-injectors that can be used for any student or staff member in an anaphylactic emergency, even if those individuals don’t have a prescription for the drug. About 30 states now have laws or guidelines allowing schools to stock undesignated epinephrine auto-injectors, with four states requiring it. A handful of other states are working toward getting legislation approved.
Food Allergy Research & Education (FARE) collaborated with members of Congress to introduce the federal bill, worked to gain additional sponsors on Capitol Hill and encouraged members of the food allergy community to urge lawmakers to support the legislation, says John Lehr, CEO of FARE.
“One way to help protect students with food allergies is to expand the availability of lifesaving epinephrine in schools,” Lehr says. “No student should die in school because an epinephrine auto-injector is not available.”
Illinois began the push for legislation that would improve access to epinephrine in schools after Katelyn Carlson’s death. Previously, Donohue and other Illinois school nurses were permitted to use epinephrine auto-injectors only on students with previously diagnosed allergies who had prescriptions on file for epinephrine. If a student did not have a prescription, the nurse could not administer epinephrine, even if the student was going into anaphylactic shock before her eyes. In August 2011, Illinois passed the Emergency Epinephrine Act, which permits schools to stock epinephrine auto-injectors and allows school nurses to administer epinephrine to any student the nurse believes is experiencing an anaphylactic reaction.
“Often the first indication that a child has a life-threatening allergy is when they have their first reaction,” says Carolyn L. Duff, RN, president of the National Association of School Nurses. “By allowing stock epinephrine in schools, rapid, necessary treatment by a school nurse is available and can potentially save a child’s life.”
The eighth-grade boy who came to Donohue’s office is among those students who experience their first anaphylactic reaction while at school. In fact, 25 percent of epinephrine administrations in schools involve students or staff members who weren’t known by the school to have a diagnosis of a potentially life-threatening allergy, according to a Massachusetts study.
“Stock epinephrine laws are important for the child or staff member who has unknown severe allergies. These laws are also important for the kids who have known allergies but haven’t notified their school and don’t have available auto-injectors,” says Michael Pistiner, MD, MMSc, pediatric allergist for Harvard Vanguard Medical Associates and a voluntary consultant for the Massachusetts Department of Public Health.
Laws vary by state. Nevada is one of four states (along with Nebraska, Tennessee and Virginia) with a mandate that requires all schools to stock emergency epinephrine auto-injectors. The other states with stock epinephrine laws give schools the option.
Laws can vary in terms of who is permitted to administer the epinephrine for diagnosed and undiagnosed students—school nurses or any trained personnel—and what locations are covered, such as buses, sports events or field trips.
Caroline Moassessi, author of gratefulfoodie.com and co-founder and co-leader of the Northern Nevada Asthma and Food Allergy Parent Education Group, started working to create a law in her state in 2012 after learning about the death of Amarria Johnson. Moassessi was especially concerned about how the system and rules in place were not adequate to save the young girl’s life.
“Everyone did what they were supposed to,” says Moassessi, who has two children with food allergies. “This could happen here to any of our kids.”
So Moassessi created the Nevada Food Allergy and Anaphylaxis Alliance and began mapping out a plan with Nevada Senator Debbie Smith. The goal was to make the law a mandate for public schools (and give authorization for private schools). The group they formed carefully considered input from various parties to ensure the regulation would be realistic. They asked the chief nurse from the two largest school districts in the state to review the bill to make sure there were no conflicts with existing state laws. And they went to lawmakers with a plan for funding the initiative, pointing to the EpiPen4Schools program, which offers free EpiPen or EpiPen Jr. auto-injectors to public and private schools throughout the United States.
“Truly our hope is that we just save a life, that we never lose a child or never have a situation where there isn’t epinephrine when it is needed,” Moassessi says of the Nevada law, which went into effect in July 2013. “Our goal is that we will always have immediate access if it’s needed. That’s why we wanted the mandate.”
Kevin Dooms, MD, an allergist with Allergy and Asthma Associates in Bellevue, Washington, agrees that more access is needed. He wrote the law in Washington state that allows schools to keep their own supply of stock epinephrine auto-injectors. Dooms worked with the mom of a food-allergic child, her son and another teen to advocate for the state legislation, which was signed into law in May 2013.
“These are just the small steps toward liberalizing the availability and thinking about epinephrine as less a medication that needs a prescription and special training and more a lifesaving medication that should be available,” Dooms says.
Elizabeth Goldenberg, founder of Onespot Allergy and co-founder of EpiCenter Medical, wants access to epinephrine expanded to all public areas that allergic children and adults frequent, such as large venues, airplanes and restaurants, much in the way defibrillators are available.
“Ultimately, I would like to see epinephrine kits become mandated in the places that allergic people go and I would like to see training mandated,” Goldenberg says.
Indeed, Kathy Donohue, the middle school nurse in Illinois, says she wondered what would have happened had the eighth-grade boy walked into town that Friday afternoon with his friends rather than come to her office.
“Would the kids know what to do?” Donohue says. “His parents were very grateful that it happened here and that we did have the undesignated EpiPen.”
Fear of Injection
Dooms would like people to be more comfortable administering epinephrine.
“There are a lot of psychological barriers to using the device,” says Dooms, who is a member of the adverse reactions to foods committee of the American Academy of Allergy, Asthma & Immunology (AAAAI). “It seems as if in a clutch situation when there’s a severe reaction, whether it be at school, on a field trip or even at home, a lot of people will suddenly become more afraid of the auto-injector than they are of anaphylaxis.”
He is concerned that some school staff and caregivers worry they might hurt the child with the auto-injector needle or that children are afraid of the needle. This delays administration of epinephrine, which increases the risk of a fatal reaction.
“The benefits of using emergency epinephrine outweigh the risks of an unnecessary dose,” Dooms says.
People with life-threatening allergies certainly have more choices than they did 25 years ago, when epinephrine was administered with a vial and syringe. The landscape changed for the drug when a former NASA engineer developed the EpiPen auto-injector. Now three brands of auto-injectors are available in the United States — EpiPen, Auvi-Q and Adrenaclick, plus the option for a generic version. The auto-injectors come in junior and adult doses.
Some of the design features of Auvi-Q, a new auto-injector introduced in January 2013, address the fear of using the medication. The device is the size and shape of a credit card and the thickness of a smartphone. It features a retractable needle and voice-guided instructions, as well as visual cues, to walk and talk you through the injection process. A mobile phone app for Auvi-Q turns your phone into a trainer, allowing you to show a video, as well as set up allergy profiles for every family member with a severe allergy.
In September, a partnership of two pharmaceutical companies announced it is working on a formulation for nasally delivered epinephrine. Still in very preliminary development, the device is aimed at treating anaphylaxis in those who are needle-phobic.
Patients, caregivers and schools can turn to various resources to increase confidence in using auto-injectors and managing anaphylaxis. Goldenberg worked with an allergist to create an online training course, available at epipentraining.com, using the World Allergy Organization guidelines for managing anaphylaxis. Goldenberg says the course helps people feel comfortable following the protocols for recognizing and treating anaphylaxis, regardless of the brand of auto-injector.
Often caregivers wait too long, monitoring symptoms instead of giving epinephrine, she says.
“When an emergency happens, panic sets in and you’re not sure what to do. It’s so easy to make mistakes,” Goldenberg says. “I want people to feel extremely well-rehearsed, that they know exactly what to do in an allergic emergency.”
The course provides guidance on the stages of allergic rescue, including how to recognize anaphylaxis, how to treat it and what to do after the injection—like having the patient lie down with his or her feet elevated above heart level until emergency help arrives.
Pistiner explains that this position helps the blood flow where it should (even if epinephrine is not available). Anaphylaxis makes blood vessels floppy and leaky. If the patient remains upright, the fluid can pool and not go where it’s needed. Keep in mind that trouble breathing or vomiting may necessitate finding an alternative position, such as lying on the side, Pistiner says.
Another essential step is to call 911 when giving epinephrine. Even if epinephrine is administered promptly, symptoms can return later and further treatment and care may be necessary. Observation in the emergency department for at least 4 to 6 hours is recommended.
It is essential for patients to talk to their healthcare providers to develop a good allergy action plan and receive proper training on how and when to use their auto-injectors, Pistiner says. “Every allergic child should have an emergency care plan created by their healthcare provider specifically for them.”
Epinephrine is the drug of choice for anaphylaxis. Antihistamines, such as Benadryl, are not effective tools to stop anaphylaxis, Pistiner cautions. Antihistamines, which treat mild skin symptoms, target only histamine receptors. In contrast, epinephrine stabilizes cell walls of mast cells and basophils (allergy cells) and works on the lungs, heart, blood vessels and gut —the organs affected by system-wide anaphylaxis.
To help people understand why epinephrine is so important for the treatment of anaphylaxis, Pistiner compares anaphylaxis to water damage. The longer it goes on, the harder it is to clean up. For example, if your sink faucet is wide open and the water is pouring all over your floor, using antihistamines is like trying to clean up with a mop instead of fixing the faucet. Epinephrine acts like a wrench to turn off the faucet and then it acts like the sump pump and the mop, attacking the entire problem, Pistiner says.
“Studies show that delays in treatment with epinephrine are associated with an increase in mortality,” he emphasizes, adding that 10 to 20 percent of anaphylactic reactions do not include the skin.
“This is important because if people are waiting to see hives or some other skin rash, they may delay administering epinephrine,” he says. “Families should become very familiar with their emergency care plans so they can promptly recognize the symptoms that require treatment.”
Social Dynamics and Awareness
Pistiner’s experience navigating life with his own food-allergic child opened his eyes to some of the difficulties involved in day-to-day living with food allergies. He remembers bringing his son to a drop-off party only two days after the boy’s first allergic reaction. He hadn’t thought about some of the practical aspects before showing up, such as talking to the party parent about food and training on when and how to use the auto-injector. So much to his son’s embarrassment, Pistiner stuck around for the entire party.
“I had all of this knowledge at my fingertips and I knew the evidence-based medicine about food allergies and anaphylaxis but I had absolutely no idea how socially complicated and emotionally challenging it was,” Pistiner says.
Parents have the responsibility to educate others about food allergies and the proper care for their children but the social dynamics can make it difficult, says Pistiner, who created the website allergyhome.org with John Lee, MD, to provide practical education about living with allergies.
For instance, family members might challenge the allergen-avoidance strategies parents have put in place to keep their child safe. In that case, sites like allergyhome.org can act as a third party, providing unbiased information from a credible source.
“Sometimes it’s tactically challenging and socially awkward but social pressure or relationship issues must never compormise safety,” Pistiner says. “Yes, we need to educate—and we need to do it effectively.”
Allergyhome.org includes a school site that provides free resources to augment the training school nurses give to school staff.
“This free tool provides basic education about food allergies, increasing awareness in schools,” Pistiner says.
School nurses play a key role in training staff and implementing standards for emergency care. They work with the schools and families to develop individual healthcare plans and emergency action plans for children with known allergies.
In states with stock epinephrine laws, school nurses must develop an emergency action plan to ensure staff members, if allowed by law, are properly trained to recognize symptoms and treat an anaphylactic reaction, says Duff of the National Association of School Nurses. NASN provides food-allergy programs such as “Get Trained,” which prepares nurses to train unlicensed school staff to administer epinephrine.
“School nurses must know and comply with laws in their states,” Duff says. “They need to develop policies and procedures to ensure that epinephrine is available, is stored properly and is easily accessible in an emergency.”
Meanwhile, a number of states still have no laws for stocking emergency epinephrine in their schools. Advocates in North Carolina are trying to change that in their state.
Benita Powell of Fayetteville, North Carolina, worked with Parents of Allergic Kids (PAK), a support group in Charlotte, to advocate for stock epinephrine. Their efforts included e-mailing lawmakers and creating a change.org petition.
Powell understands the fear of having a food-allergic child at school without access to epinephrine. The school district would not allow her 9-year-old daughter, who is allergic to peanuts and some tree nuts, to have an auto-injector at school because of a misstep in paperwork. After a day spent worrying and the school’s refusal to accept the medication until it received the proper paperwork, Powell left the auto-injector on the front desk with a note saying she wouldn’t sue if staff had to use it on her daughter. The EpiPen stayed, but not without a frantic response from the school clerk and much negotiation on Powell’s part.
“If we had this emergency epinephrine law, it would have saved me some peace of mind,” Powell says.
Kendra Montgomery-Blinn of Durham, North Carolina, partnered with a local physician and North Carolina Representative Rick Glazier to create a bill that would mandate stock epinephrine in North Carolina’s schools. Glazier, a Democrat, assembled a team of Republicans to co-sponsor the bill in the Republican-controlled state House. They were adamant that the bill be a mandate, not voluntary.
Given budget cuts and other concerns, voluntary legislation wouldn’t provide the needed coverage, says Montgomery-Blinn, who has a school-age son with food allergies. “Anything that doesn’t have to be dealt with immediately goes to the bottom of the list of the million things schools have to do.”
In addition to creating a mandate, Glazier adds, it was important that the statute cover activities both inside school and on the grounds, such as at football games, and that it have a training requirement.
While the bill passed the state House unanimously, the North Carolina Senate didn’t consider it during the last session. Glazier reports that several state senators told him they were trying to cut back on regulations and that there was no data about anyone dying from anaphylaxis in a North Carolina school.
“Surely, those two rationales can be overcome,” Glazier says. “My only hope is that no child dies in the meantime.”
Glazier encourages all parents, friends and groups to present cogent letters, calls and e-mails to the key legislators involved in epinephrine bills in their given state and at the national level.
Advocates should explain:
■ Why the law is important.
■ How it has assisted in other states.
■ What medical organizations say about the life-saving use of epinephrine.
■ What groups support the legislation.
■ Real-life cases for those lawmakers who don’t have a personal connection with someone with food allergies.
“I always think personal stories are best,” Glazier says. “You don’t want to make a law based strictly on anecdotal stories but when you’ve got a critical mass of stories all saying the same thing, then it becomes important.”
Collaboration with people throughout the state of Nevada helped Moassessi send a message to lawmakers. Communicating clearly with constituents was key. She sent an e-mail to her contact list, notifying them that a hearing was coming up, providing contact information of lawmakers and detailing what talking points to include. When the hearings were over, she sent another e-mail, reminding people to send thank-you notes.
It’s important to be gracious and respectful, even if people disagree, she says. “The thank-you’s really made a difference. We started to get a reputation for being polite.”
As the work continues on state and federal levels, Moassessi and other food-allergy advocates stress that parents truly have the power to make the world safer for their children.
“You don’t have to wait for somebody in elected office to come up with the idea,” says Montgomery-Blinn. “As a citizen, you can do this. You can push for this. You can say, ‘I want to see this happen’—and then make it happen.”
Wendy Mondello (tasteofallergyfreeliving.blogspot.com) lives in North Carolina.