Dangerous Misconceptions Keep People with Food Allergies from Getting Epinephrine

Erin Malawer, co-founder of The Food Allergy Collaborative, for Allergenis 

There is only one medication that can stop an anaphylactic reaction – and that’s epinephrine. Everyone diagnosed with a severe food allergy should have a set of epinephrine auto-injectors (EAIs). And yet, a recent survey of adults with food allergies shows that only about half have ever been prescribed it and only 33% of those individuals have unexpired EAIs. 

To better understand what prevents more people from getting epinephrine, The Food Allergy Collaborative - a coalition of national non-profits - conducted a survey of over 1,000 adults. Members of the Collaborative began the survey speculating that the high cost of epinephrine and insurance coverage would play the biggest role in keeping people from accessing EAIs. 

The results were surprising. 

While cost did play a role, neither the high price of epinephrine nor insurance coverage of auto-injectors were the top reason for not having EAIs. A stunning 48% of people surveyed didn’t have epinephrine because their “doctor did not indicate it was really needed” or they didn’t “believe I need it.” These answers are concerning as it leaves those with food allergies unprepared for severe allergic reactions. 

Another unexpected result was the shocking 36% of respondents who believed that epinephrine had “negative or life-threatening side effects.” The mistaken belief that epinephrine is harmful highlights the critical need for continued education by healthcare providers and advocacy groups to underscore the safety of this life-saving medication. Worry about damaging side effects might keep those suffering from anaphylaxis from using their epinephrine auto-injectors when they need it most. 

Everyone who has a food allergy runs the risk of suffering a severe allergic reaction, called anaphylaxis. Reactions can escalate from mild to serious quickly. Because anaphylaxis can be life-threatening, it is important that every patient carry a set of epinephrine auto-injectors in the event of an emergency. Early administration of epinephrine is associated with more positive outcomes. That means, when you are experiencing anaphylaxis, the earlier you can give yourself a dose of epinephrine the more likely you are to stop symptoms from getting worse and recover quickly with less complications. 

Thanks to epitope mapping and oral food challenges, we know that food allergies are very individualized, and that everyone’s food allergic sensitivity is different. The amount of allergen (or protein) it takes to trigger a reaction may differ from one person to the next. These tolerance levels are known as thresholds. It is important to note: no matter whether your threshold is low (level 1 - most sensitive) or high (level 3 - more tolerant), you should always have quick access to epinephrine. If you haven’t done so recently, write down and discuss your questions or concerns about epinephrine with your healthcare provider. In the meantime, keep your EAI prescriptions up to date and readily accessible.