A new Collaborative is issuing a call to action for food allergy advocates to join the cause of anaphylaxis preparedness in childcare centers across the United States.
About 60 percent of American infants and toddlers under the age of 6 are in childcare, and this age group also has the highest prevalence of food allergies. Yet, unlike K-12 schools, childcare centers turn out to be less likely to be prepared for an allergic emergency.
Allergic Living spoke to two key Advisory Partners of the new Early Childhood Anaphylaxis Collaborative (the Collaborative) to understand the issues, urgency and how food allergy advocates can positively impact the early learning center landscape. Allergist Dr. Alice Hoyt,* chairman of the nonprofit Code Ana, and Thomas Silvera, executive director of the Elijah-Alavi Foundation, are optimistic that the Collaborative can bring widespread change to anaphylaxis readiness in the early learning space.
“There is not robust food allergy education at these centers across the country,” says Hoyt of Code Ana, which trains providers on medical emergencies, especially anaphylaxis. “There’s not even much in the way of food allergy education required by licensing or state agencies for early childcare centers.”
Childcare centers frequently enroll children with food allergies. “Yet, they don’t necessarily have the education for how to prevent, recognize and respond to a food allergy emergency,” says Hoyt. “There’s a lack of food allergy and anaphylaxis education, and a lack of understanding on how and when to use epinephrine.”
She and Silvera believe the Collaborative can grow quickly beyond the founding partners, and bring meaningful change. Parents, childcare providers and healthcare professionals are all encouraged to join.
Silvera foresees strength in numbers: “We need people to be involved. It has to be on a bigger scale to create the change that is urgently needed.”
How Can an Advocate Help?
The Early Childhood Anaphylaxis Collaborative, whose founding members include Kaléo, early learning organizations, and advocacy groups, as well as Allergic Living, has already been meeting with hundreds of early learning leaders. “I’m very hopeful about the Collaborative,” says Hoyt.
The Louisiana allergist launched Code Ana in 2015 as a food allergy and anaphylaxis teaching resource. In the years since, she and her team have trained thousands of childcare staff – online and in-person – in anaphylaxis management.
She notes that when a person joins the new Collaborative online, you’re immediately sent “an email that links to excellent resources to help get early childcare centers better prepared for anaphylaxis.”
In addition to educational handouts, there’s an informative report that explains what an Anaphylaxis Response Plan is and imparts food allergy management facts. This includes the importance of using epinephrine promptly in a severe food-allergic reaction. Among the facts: Did you know that 75 percent of childcare professionals report working directly with food-allergic children? Or that 1 in 4 reported a child’s allergic reaction to food while on the job?
Other resources include the signs and symptoms of anaphylaxis, which are often more nuanced in younger kids. For instance, Hoyt says to watch for behavioral changes, such as a child who’s happily playing suddenly becoming withdrawn after eating. “That can be the first symptom that something’s going on here.”
With in-person training, Hoyt has been surprised by childcare providers’ misconceptions about anaphylaxis. For instance, they often don’t realize that vomiting can be a key symptom. Or she’s heard confident statements to use epinephrine only when there’s breathing trouble in an allergic reaction. “That’s absolutely not correct,” she says. “If we’re waiting until someone’s having trouble breathing, then we could be behind the eight ball on treating anaphylaxis.”
Turning Inaction Into Momentum
The flipside of the equation is the huge difference a good Anaphylaxis Response Plan and training makes at a childcare center. “When we do provide the education, it’s like light bulbs going off,” Hoyt says.
Silvera agrees. “I’ve seen providers go from the hesitancy to being empowered. Once you give the proper training, they learn to recognize the symptoms. They will act quickly, and they’re able to respond with epinephrine to save a life,” he says.
Silvera and Elijah-Alavi Foundation (EAF) co-founder Dina Hawthorne have been lobbying for Elijah’s Laws in individual states for several years. Thanks to their efforts, six states have now passed such childcare food allergy training laws.
The laws are named for Silvera’s and Hawthorne’s late son. Elijah Silvera was only 3 years old in 2017 when a childcare worker fed him dairy-containing food, despite the preschool knowing of his allergy. He tragically passed away from anaphylaxis.
“Sharing Elijah’s story is never easy, but it’s necessary,” Silvera says. With the lawmakers, “I want them to understand the real-life consequences of inaction.”
Silvera says the Collaborative complements EAF’s work, which he and Hawthorne have long wanted to take to a bigger, national scale. He sees the Collaborative as the opportunity to do that.
He encourages the food allergy community to get involved. “We need all the voices at the table,” says Silvera. “When family advocates and professionals come together on the Collaborative’s platform, we create a momentum that will lead to safer childcare environments across this country.”
Stock Epi in Childcare: Where are We?
People often don’t realize: there are more kids diagnosed under the age of 6 with food allergies compared to older children. This is for a couple of reasons. First, Hoyt points out that some children will outgrow a food allergy by grade school.
Secondly, the infant and toddler stages are when children are trying new foods for the first time. In fact, up to one-third of all food allergic reactions in childcare centers or schools occur in children who had not yet been diagnosed with a food allergy, or the allergy is unknown to staff.
“This underscores the importance of early childcare centers being prepared to prevent, recognize and respond to an allergic reaction,” says Hoyt. It also drives home the importance of having stock – or undesignated – epinephrine.
For K-12 schooling, most states have provisions to allow stock epinephrine, which is prescribed to the school as an entity versus a specific person. This means it can be used for anyone in an allergic emergency. Yet with childcare, “there are so many states that don’t have policies in place to protect the most vulnerable,” says Silvera.
Hoyt explains that one of the reasons for this fork in the road on stock epinephrine is that most states have specific legislation for K-12 schools. When it comes to “non-school” entities – from restaurants to colleges or childcare centers – that’s different legislation.
She says that 30-plus states now have what’s called “qualified entity legislation,” which means stock epinephrine can be kept and used in an emergency. But some laws have not specifically mentioned childcare centers. Code Ana and EAF are working to improve that.
Hoyt says it’s often just a matter of working with a state representative to tweak an existing piece of legislation – and get a provision for childcare center stock epinephrine added.
Childcare Culture of Awareness
When it comes to working with childcare centers, often they will raise concerns about liability with administering an epinephrine auto-injector to a child. But Silvera says the landscape is shifting quickly on this concern. He notes that not using epinephrine when required carries a far greater risk of liability for failing to prevent a life-threatening reaction – or even loss of a young life. In such situations, they are acting in good faith, and according to the Anaphylaxis Response Plan.
For Hoyt, the Anaphylaxis Response Plan is the fundamental tool. It directs the childcare staff to know how to prevent or recognize and respond to an anaphylactic reaction. In addition, a child with known allergies should have an individual emergency action plan, which details their food allergies and how the center will respond if the child is exposed to them.
Hoyt, Silvera and the rest of the founding members of the ECAC hope many food allergy advocates will get involved in the ECAC. “The more people we get on board with the Collaborative, the larger the voice, the more this will change the norm of what early childcare preparedness is,” says Hoyt.
“The more momentum through this movement, the more centers we’re going to get prepared. Ultimately,” she says, “that’s going to result in safer, healthier children.”
Collaborative: How to Get Involved
Interested in helping the Early Childhood Anaphylaxis Collaborative’s work to ensure childcare staff can manage severe food-allergic reactions? Here are a few things to do.
1. Join the Collaborative here and gain access to essential childcare and anaphylaxis resources.
2. Support legislative changes on allowing stock epinephrine in childcare. Find your state’s current law here.
3. Engage in conversations with childcare providers about the importance of training and an Anaphylaxis Response Plan.
4. Encourage childcare centers to join the Collaborative to gain valuable information and resources about managing and preventing anaphylaxis.
This article was supported by Kaléo, Inc.
*Dr. Alice Hoyt is a paid advisor for Kaléo.
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