This past week has been rough for those of us in the food allergy world. There have been two deaths from anaphylaxis: Andrea Mariano of Canada and Simon Katz of Colorado.
These deaths have hit me hard. Maybe because they both were teens who ‘always carried’ their epinephrine, but didn’t do so on this one occasion – a decision that would change the course of their life. Maybe it’s because Simon Katz lived just one hour from me. Maybe it’s because these deaths were so avoidable.
Regardless, I’ve come to the conclusion that we need to take a stand and say, “NO MORE DEATHS!”
I don’t want any more parents to become advocates in the food allergy world after they’ve endured an unimaginable tragedy. There needs to be a complete change in how the message is given to teenagers to “always carry your epinephrine!”
How to go about this?
I’d like to ask Mylan and Sanofi (the makers of EpiPen and Auvi-Q) to fund and lead a campaign, along with national food allergy organizations like FARE, FAACT and Kids With Food Allergies, to get this message out to the following stakeholders:
1) ER doctors – I can’t even count the number of times I’ve heard food allergy families recount the miscommunication they’ve been given from an ER doctor about food allergies and epinephrine auto-injectors. These doctors must be educated to counsel families properly about EpiPens and Auvi-Qs. The devices should never be left in a car glove compartment – it’s criminal for doctors to be giving out this advice!
2) Family Practice doctors and Pediatricians – It’s my belief, based upon my experience, that if a child has a peanut allergy they should be referred to an allergist. An allergist is better able to manage these allergies that research has shown are more likely to cause anaphylaxis. I’ve heard too many families tell me that their child’s peanut allergy isn’t serious enough to warrant an epinephrine auto injector, according to their pediatrician. This makes me cringe and shows that more education is needed for these doctors if they are not going to make a referral.
3) Allergists – My experience has been positive with allergist’s knowledge of epinephrine auto injectors and the need to always carry them. I do see an opportunity for allergists to have more training on how to work with teens to create an agreement on compliance however. Having a doctor empower the teen provides more weight than a parent reminding, “do you have your epinephrine?”
4) Parents/Families – There are many lessons that families need to pass on to their children, who grow into teenagers, with food allergies – always read labels, don’t eat foods that don’t have a label, and always carry your epinephrine. The likelihood is that mistakes will be made. But the one message that parents need to understand from the first day of diagnosis is to never leave home without epinephrine. Yet many parents have not understood this message enough to follow through every day, every time they leave the house. Children watch what we parents do, not what we say. American Express used the tagline “never leave home without it” for years. We need to encourage all families to follow this sage advice! We also need to encourage families to let the school know if your child has food allergies and is to carry epinephrine. Complete the school paperwork, and tell those who need to know to keep your child safe!
5) Teenagers – Today’s teens are immersed in social media. Let’s meet them on Facebook, Twitter, Instagram, Tumblr, etc. with messages about food allergy awareness and carrying their EpiPen/Auvi-Q. Using the technology of their smartphones, we can reach teenagers where they live, to show them it’s cool to have epinephrine with them. If something were “Apple cool”, I’ll bet teenagers would be clamoring to have it! It’s also ‘sick’ to train your friends on allergic reaction symptoms, and ‘dope’ to train them on EpiPen/Auvi-Q administration.
6) Schools – More and more states are passing legislation to allow for stock epinephrine in schools. Yet if the school isn’t aware of the students who have food allergies, or don’t have it available at school events, it’s not going to be helpful. Schools need to run “Anaphylaxis Drills” to determine if they are prepared for a teen suffering a severe allergic reaction. Many schools don’t know the steps to take for such a drill.
Lastly, I’d like to ask for Sanofi and Mylan to create an epinephrine device that is smaller and more likely to be carried by teenagers. The cost of EpiPens and Auvi-Qs have increased drastically over the last few years. Please take some of those profits to fund new technology in compact, easy to carry auto injectors.
Our teenagers are SO worth it!