This EpiPen News Is Part of A Disturbing Trend

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The TV was on as we sat waiting to be called in for our check-up. My son, who is 11, turned his head as he heard the anchor use the word “EpiPen.” He is in tune since he has a life threatening peanut allergy and the EpiPen has saved his life. His face was full of emotion as he listened to the anchor talk about how some people could no longer afford this life-saving device. He shook his head and said “Mom, that can’t be right, they can’t be right, can they, everyone who needs an EpiPen should have one.”

My son's life-saving EpiPens
Lianne Mandelbaum
My son's life-saving EpiPens

The media has exploded as word spread of some parents paying well over 600 dollars for this necessary, life-saving device. Headlines abound about big pharmacy greed and patients forced to pay outrageous prices, and this issue has enraged everyone. I am heartened to see food allergies being taken seriously in the mainstream media. As my son stated, everyone who needs an Epipen should have access to one. But food allergies are a topic that is underreported. Even when we are armed with our EpiPens, we have a long way to go in getting the public to recognize the real challenges of living in a world where respect for food allergies as a potential life-threatening disease is lacking.

As founder of the No Nut Traveler, I collect the testimonials of food allergic passengers traveling on commercial airlines. Shockingly, many food allergic passengers are being ridiculed, spoken to rudely by the airline staff and most egregiously, sometimes asked to leave the airplane when disclosing a food allergy.

Last month, a food allergy mom sent me a testimonial via Facebook with a heart-breaking photo of her child, as her family was asked to leave the plane by the pilot for disclosing her child’s food allergy. She informed me that she had notified the airline ahead of time of her daughter’s allergies. She brought their own food and a supply of medication. She said, “We did everything humanly possible on our part. I do not know what else we could have done to prevent such a situation from happening.” She went on to tell me “a supervisor from JFK was called on board and he took our passports and boarding passes. We were then escorted out of the plane under the threat of calling security on us. We were publicly humiliated as we walked through the full airplane. My daughter was brought to tears. On the same airline the next day, a different pilot let our family fly.” I find this kind of inconsistency and rudeness unacceptable.

Later in the month, a 22-year-old girl from New Jersey shared another disturbing encounter with me. She asserted that after asking for an announcement for her severe nut allergy, and asking for the surrounding rows to please refrain from eating nuts, the pilot told her that she was an inconvenience to have on-board and that her thought process was selfish. She further asserted that the pilot said to her, “You should be thankful to be allowed on this flight due to the huge risk and inconvenience you may cause to other passengers.” Her aunt, who was traveling with her, then asked what they would do if they had someone with a disability on the airplane and the pilot said they would accommodate them. She then asked why not her niece and he responded because a food allergy is not a disability.

When you receive the diagnosis of a life-threatening food allergy, your life is irrevocably altered. Failure to treat a food-induced anaphylaxis quickly (i.e. within minutes) with epinephrine substantially increases the risk of death. No one asks to have this condition. There is the false perception that once you have your EpiPen, everything will be fine. But the truth is that sometimes the EpiPen can only buy you time. That is one of the reasons why you need to carry more than one-a reaction can require multiple EpiPens, and you always need to go to the ER to be monitored after using one.

There is no ER in the air and that is why, as allergic passengers, we ask for reasonable accommodations to make flying safer. Being able to pre-board, to clean the area from the last occupant, informing those around us to be cautious and asking politely not to consume what is deadly to us, and educating the airline staff of this potentially fatal disability, are reasonable requests for a legitimate medical condition. My greatest fear is that it will take a death in the air for meaningful change to occur.

Child with her brother after being escorted off airplane due to her food allergy.
Photo taken by her mother with permission for Lianne Mandelbaum to use on Huffington Post.
Child with her brother after being escorted off airplane due to her food allergy.