Janeen Zumerling of Auburn Township, Ohio, knows better than to let her 4-year-old son, Jason, go anywhere without a pocket-sized medical device that can save his life.
Like growing numbers of parents of severely allergic kids — and the children themselves — Zumerling keeps a nearby supply of EpiPens, single-use shots of epinephrine that can quickly counter Jason's potentially fatal reaction to foods from gluten and eggs to milk, peanuts and tree nuts.
“I have two in the kitchen cupboard, two in the hall closet by the door that goes outside, two at school and two in the backpack,” says 38-year-old Zumerling, who's had to use the device once, when Jason was 20 months old.“There’s always [an EpiPen] nearby.”
She's not alone. About 3 million American children are suffering from food allergies, a number that’s increased 18 percent since 1997, according to a recent study by the Centers for Disease Control.
As allergies to peanuts, milk, eggs and gluten have become commonplace, a cult-like following has emerged around the EpiPen, which auto injects a pre-measured dose of epinephrine to someone experiencing anaphylaxis, a severe whole-body allergic reaction.
An equally strong market has emerged for stylish EpiPen carriers, including some adorned with robots and strawberries for young kids and discreet holsters for self-conscious teens.
Doctors prescribed 1.4 million EpiPens in 2003, but by 2007 that number had reached 1.9 million — a 36 percent rise, according to research provided by IMS Health, a healthcare information and consulting company.
“A pediatrician 10 years ago might have written five or 10 EpiPen prescriptions, and now writes 40 or 50,” said Dr. Robert Wood, Director of the Allergy and Immunology division at Johns Hopkins Children’s Center in Baltimore, Md. “If you go to an elementary school nurse, 10 years ago she might have had one or two EpiPens on hand. Now she has 50 to 60.”
Dr. Frank Virant, an allergy/asthma specialist at Seattle’s Northwest Asthma and Allergy Center, said that after skin and blood tests have established a severe allergy, “From a physician’s standpoint, you can never be faulted for giving someone an EpiPen.”
100 to 200 die each year of food allergies
When Jason Zumerling was 20 months old, he had an allergic reaction to egg and started showing signs of anaphylactic shock: hives, unstoppable runny nose and projectile vomiting. Other symptoms can develop in seconds or minutes and can include dangerously low blood pressure, swelling in the face and throat so severe it can block the airway, fluid in the lungs and abnormal heart rhythms.
The epinephrine in an EpiPen works to reverse the effects and gives the child a 10 to 15 minute window to get further emergency medical assistance.
Each year in the U.S., anaphylaxis caused by food allergies results in estimated 100 to 200 deaths, sometimes within minutes of exposure, according to Jennifer Love, a spokesperson for the Food Allergy & Anaphylaxis Network.
EpiPen is the brand name of the original auto-injector that was introduced by pharmaceutical company Dey, L.P. in 1980. For years, it was the only product of its kind in the United States. (Currently one other company also makes a similar product, but EpiPen still maintains 97 percent of the market share.)
The Epi Puppy
The rising number of EpiPens has created a growing market for fashion-inspired EpiPen carriers and portable pouches.
Some carriers are geared to young kids and come adorned with robots and strawberries. Other styles have belt straps or leg straps for teens who may be self conscious about visibly carrying their pens. Others for older kids or adults come in various designs and fabrics that are marketed as functional, convenient or just plain hip.
There are some in neon colors (easy to spot). Others come in weather-resistant material, since EpiPens must be protected from extreme temperatures.
A handbag designer from Markham, Ontario, in Canada, Helen Yamashita, started her own line of KoziEpi pouches two years ago. Best sellers are the pink EpiPen Princess for girls and a camouflage design for boys.
Debra Stafford of Alberta, Canada, got into the EpiPen carrier business out of necessity. When her 4-year old daughter Hayley, who is allergic to peanuts, was starting kindergarten, Stafford could only find adult-size fanny packs in which to carry the EpiPen. Desperate on the day before school started, she found a pencil case in the form of a stuffed brown puppy. She attached a cord to it and sized it for her daughter’s tiny waist.
The Epi Puppy was born. Stafford developed a prototype with a New Jersey company that creates plush toys. The chocolate Lab fits two EpiPens and has an adjustable, kid-sized belt.
Hayley Stafford, now 10, says it doesn't bother her to always carry an EpiPen. She has never been embarrassed by it, she says, because it's just something she has learned to live with. Besides, her friends liked her Epi Puppy so much, they wanted their own.
"My friends wanted one to wear to carry stuff in," said Hayley, who recently bought a new EpiPen carrier that's purple with stars on it. "My friends say they like the puppy better, but the new one goes with more of my clothes," she said.
'A leap of faith'
The cute and lighthearted carriers may entice kids, but they belie the seriousness of the device within. Carrying the EpiPen, say parents of severely allergic children, is like a soldier in war carrying a gun. It is the first line of defense to a condition that could take a child’s life in an instant.
While fear of using the EpiPen is common, “once [parents] see how quickly the epinephrine starts to work, they aren’t afraid to use it again," says Anne Munoz-Furlong, founder of the Food Allergy and Anaphylaxis Network, based in Fairfax, Va.
Kelly Vogel’s children Katrina, 8, and son Brett, 7, were both diagnosed with allergies by age 2. Since then, the Fort Lauderdale, Fla., family has kept their house a peanut-free zone. But on New Year’s Day in 2006, the kids asked if they could have a cookie left-over from the previous night’s party with close family friends.
Katrina took one bite, tasted the peanut butter, and immediately spit it out. “But Brett, who had never had peanut butter and didn’t know what it tasted like, swallowed his bite,” Vogel said. In the next 10 minutes as her son exhibited tell-tale signs— hives, a scratchy throat, and a throbbing tongue — she mustered her courage and injected the EpiPen. It’s the only time she’s ever had to do it.
“I got in the zone,” she said. “I was scared but I knew I just had to do it.”
One benefit from the Vogel family’s experience: it spooked both kids into an extreme vigilance about their allergies. “When they go on play dates, my kids ask about everything. If they don’t know the ingredients, they won’t eat,” Vogel said. “It really is a leap of faith. But you get used to it. This is our life. I have to trust them.”
It also sometimes means trusting another adult with your child’s life. Dropping a severely allergic child off for a sleepover also means dropping off an EpiPen, often to an adult who has never seen one before.
Gabrielle Peterson, mother of 4-year-old Bella, who is allergic to peanuts, teaches sitters, friends and family members how to use the EpiPen by injecting the accompanying trainer pen into an orange.
Peterson said it's not hard to use the EpiPen. There are teaching videos on the Internet. And each pen comes with explicit directions on its packaging.
What is hard, Peterson says, is getting people to understand that an allergic reaction is an emergency situation. She said at first it was a challenge to train Bella's grandparents on how to use the EpiPen because peanut allergies weren't prevalent when they were raising kids.
"Once they realized the severity of it, they were supportive of learning how to use it," she said.
Since the EpiPen expires every 12 months, it can be a costly endeavor for families. Even with insurance, one EpiPen often runs between $60 and $100.
Some families have never had to use the EpiPen. So when they think about cutting expenses, they think of the money they spend on unused EpiPens. But Munoz-Furlong warns that families with allergic children can't get complacent.
“They consider not renewing their prescriptions,” Munoz-Furlong said. “But you just don’t want to take chances. Consider the EpiPen is your life insurance.”
Kavita Varma-White is a freelance writer based in Bellevue, Wa.