Chappaqua resident Stacey Saiontz knows exactly what to do if her son Jared, 10, has a severe reaction to one of the foods he is extremely allergic to. But not everyone does. That’s why Saiontz has been advocating in Albany for New York state to enact legislation that will enable bus drivers, schoolteachers and other school personnel to administer an epinephrine auto-injector (one brand name is EpiPen) in the case of emergency circumstances.
“When a child eats something they’re allergic to, they can have an anaphylactic reaction, where their throat closes up in seconds to minutes,” she says. “If you don’t administer epinephrine immediately, the child can end up dying. That’s why it’s so important to have this protective legislation.”
While her older son, Elliott, age 12, has no issues, Saiontz says she noticed there was a problem with Jared’s reaction to food when he was just a baby. “The first few months of his life he was constantly covered in rashes and hives, and he was throwing up all the time. I kept bringing him to doctors and they said he might have acid reflux or baby acne,” Saiontz recalls.
She finally took Jared to an allergist who said he was highly allergic to dairy, eggs, wheat, oats, rye, barley, sesame, tree nuts and several alternative grains, as well as dogs, cats and bees.
“When Jared was younger, it was very hard because all my friends’ babies would be crawling around and licking toys or putting them in their mouths,” she says. Saiontz had most of Jared’s play dates at her house so she could wash off and clean everything he touched so it wouldn’t be contaminated by foods he couldn’t tolerate.
Jared was able to attend World Cup Nursery School and Kindergarten in Chappaqua where teachers made sure everyone cleaned his hands with disinfectant wipes so Jared could play safely with the kids in his class. Saiontz adds: “I brought in his snacks and lunches, and the school made every effort to keep the area where he ate very safe.”
It was around this time that Saiontz, who is a graduate of the University of Michigan and American University Washington College of Law, began to lobby in Albany for bills that would protect children with severe food allergies.
Among the first pieces of legislation for which she advocated was to allow schools to stock and administer epinephrine. “What we found was that a lot of children try a new food in school and don’t know they’re allergic to it,” she says. “Teachers’ and nurses’ hands were tied, because even though they had epinephrine, they couldn’t use it unless a child had a prescription for it.” It became law on Oct. 30, 2014, and now New York state schools stock epinephrine and the nurse’s office is allowed to use it on anyone having an allergic reaction.
Saiontz also helped advocate for a self-carry law to allow New York state students to carry and use their own epinephrine auto-injectors in school. “Where this really came into play was in middle and high school when children were going home on the bus with other students to their houses and they weren’t allowed to have their epinephrine with them.” This bill, which also passed several years ago, permits children to carry their life-saving medication with them on the bus.
Just recently, Saiontz worked to expand protection for children with severe allergies by lobbying to pass legislation authorizing school bus drivers and employees of certain other school contractors to administer epinephrine using an auto-injector. Saiontz and Jared, along with a group of local moms and children, spent many hours writing, calling and visiting Albany to meet with legislators to advocate on behalf of the pending legislation. Gov. Andrew M. Cuomo signed it into law on Aug. 22, 2017. Separate bills had been sponsored by State Assemblyman David Buchwald and State Senator Terrence Murphy.
Saiontz says she was spurred to lobby for this because of a case in Massachusetts in which a school bus driver had saved a child’s life by administering epinephrine. “My son said he wished we could have something like this in New York, so that he, along with all other children with food allergies, could ride the bus safely,” she recalls.
As a result of his mother’s efforts, Jared can now ride the school bus. “It it makes such a big difference, because he can be on the bus with all his friends. It was a social aspect he was missing out on all this time.”
In addition, Saiontz had been pushing for a law that would require every newly certified teacher in New York state to take a free online course on recognizing life-threatening reactions to food allergies and administering epinephrine. At press time, a bill was awaiting a vote in the State Senate, and an identical State Assembly bill was still in committee.
Other legislation Saiontz is working on includes bills to require New York state ambulances to stock epinephrine and for first responders to be allowed to carry and administer the medication. On a national scene, she has recently visited Washington, D.C., to advocate for better FDA labeling for sesame, which can be a dangerous allergen.
“We want to do as many things to help as many people stay safe and educate as many people as we can about food allergies and prevention,” says Saiontz, who was just honored by the nonprofit Food Allergy Research & Education (FARE) for her advocacy work. “It’s a really easy to keep children safe, as long as you know how to use an epinephrine auto-injector in case someone does have a reaction.
“Obviously, I’d love to have a cure, but I’m not a doctor so I won’t be able to find one. My goal is to to be able to keep all children with food allergies safe and included, so they can live the same exact normal life as everybody else.”
For more information, visit foodallergy.org.