Food allergies are not funny [PODCAST]

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“If we do not raise objections to this kind of comedy, we are teaching those around us that food allergies can be funny. It is no that surprise that data indicates kids and adults are anxious, embarrassed, and bullied due to food allergies. When we make light of anaphylaxis, we perpetuate the misleading stigma regarding food allergies.

It has been my steadfast belief that in educating the greater public on the potential severity of food allergies, we will reach a point where it will be taboo to make these kinds of ‘jokes’ publicly. I hope for a day that it is simply unacceptable to joke about food allergies. Clearly, we are not there yet.”

Lianne Mandelbaum is founder, the No Nut Traveler, and can be reached on Twitter @nonuttraveler.

She shares her story and discusses her KevinMD article, “Food allergies are not funny.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Lianne Mandelbaum. She is the founder of the No Nut Traveler, and she wrote the KevinMD article “Food allergies are not funny.” Lianne, welcome to the show.

Lianne Mandelbaum: Thank you so much for having me on here today, Kevin.

Kevin Pho: So we’ll get into your article in a little bit, but first off, can you share your story and your journey to where you are today?

Lianne Mandelbaum: Sure. The backstory of my advocacy is really a humiliating personal experience on United Airlines. We were taking a flight home, and we were sitting in the departure lounge, and the woman behind me overheard me warn my youngest child that he couldn’t go into a particular store because they were making something with fresh peanut butter. She turned around to me and said, “We’re all going to eat peanuts here. Does your son have a bad allergy?” And I said, “He has an anaphylactic allergy. Thank you for the heads-up.” And we moved. Appreciate it, right? We’re in the departure lounge, we’re not in the middle of a flight, I can move. So I moved everything, except that her three children followed us and started throwing peanuts up in the air, missing their mouths on purpose, crushing them underfoot, kicking them toward my son, and laughing.

Since she did nothing to stop this behavior, I decided that I would want to speak to the airline, because I had found out she was going to be on our flight; I had asked her previously. I went up to the desk and I said, “Can you just make an announcement when we get on the plane that there’s a child in row 10 with an anaphylactic allergy?” They said they would go ask the crew. I wasn’t expecting any pushback. He’s eight, he’s cute, he’s looking up at them with these big brown eyes. And they came back and said, “This crew doesn’t want to make the announcement.” I said, “Well, can you tell me why?” “No, we don’t have to tell you why.” “Can I speak to them?” “No, we don’t have to let you speak to them.”

I went up the manager chain at United, and the last manager looked at me, looked at him, and said, “Well, you think he’s going to die, just don’t get on that plane.” At which point my son, who was never terrified of his allergy, who carried an auto-injector, who wasn’t frightened, became frightened and started crying and said, “The man says I’m going to die. I’m only eight. I have my whole life ahead of me. Mommy, you can’t make me get on that plane.” So we didn’t get on that plane.

But I decided that this was unacceptable, and I came home and I literally launched my website the next week. I did a sketch on a little yellow legal pad, and I decided I needed to capture testimonials like my story, which is by far not the most egregious; it’s one of the least egregious. I needed to collect them and fight for a change, because nobody else was doing it. That’s where I ended up.

Kevin Pho: So tell me, how often do these incidences occur, from your experience and from the stories that you collect on your website?

Lianne Mandelbaum: I can’t give you a percentage. I’m hoping one day someone is going to sit there and catalog this. I have been talking with Ruchi Gupta, among others, to do some sort of research on this, but I think it happens more often than it doesn’t, whether you’re being dismissed by a flight attendant or mocked by another passenger. There are even egregious circumstances where you are asked to leave an airline. One of my testimonials was a young girl with a dairy, peanut, and egg allergy going into National on Lufthansa. She got on the plane and just wanted to inform the flight attendant, “I have my own food, I have my auto-injector, but these are my allergies.” And they asked her to leave the plane. In fact, they threatened to take her brother off the plane and to take his passport if she didn’t get off. And you see this 15-year-old girl, I have the video of her, crying and humiliated. And then the next week, they flew on the same airline out of a different airport, and they were fine.

I mean, this inconsistency for a legitimate medical condition is, to me, unacceptable, and that’s what I think we see: consistent inconsistency. So you can fly United one week and be fine, and the next week not be fine, and there’s no one to hold accountable. There’s no room, and even if there was, there are no ramifications. So really, my big fight is to get fair, evenly promulgated policies throughout the airline industry, so you’re not penalized for revealing that you have a food allergy, and then also to have the right equipment on the plane to treat it, if it’s your first time, or even someone who has a known allergy but needs more than one auto-injector.

Kevin Pho: And from the airline standpoint, what are the reasons not to make such an announcement?

Lianne Mandelbaum: What I hear a lot, for example on American, actually: I was part of the DOT complaint that went against American Airlines that now gives us the right to pre-board. When they were answering this complaint back and forth, when they thought they weren’t going to be held accountable, one of the things they said is that it gives people a false sense of security, that if they make that announcement and you have a reaction, or you think you’re safe, it’s false. I mean, this is ludicrous on its face, because as a food allergy parent, as an adult with a food allergy, you know there is no such thing as a risk-free environment. It’s just impossible. We live in a world with our allergen, right? All we want to be able to do is mitigate the risk. That’s it.

We’re not going to think we’re safe. We’re not going to think somebody didn’t eat something that we’re allergic to the day before. We just want to get in there clean and tell people around us, so they can live by their own moral compass, and most of them will put away the offending food so it’s not right there, and then everyone can fly safely. It’s not that difficult, but they are resistant. I call it institutional inertia. They just don’t want to change anything. And we’re here to make sure that change happens, because it’s a legitimate medical condition and it’s increasing.

I think it was 377 percent. A group called FAIR Health, which is F-A-I-R, did a review of emergency room coding. So we’re not talking about a retrospective, asking a parent when someone had a reaction. These are actually codes for going to the hospital and being treated, and it went up 377 percent over the past, I think it was, three years. I mean, this is crazy. This is something that needs to be addressed. You don’t want someone to die on the plane.

Kevin Pho: All right, let’s transition now into the KevinMD article that you wrote, “Food allergies are not funny.” Now, for those who haven’t read that article, can you just walk my audience through it and maybe share the story of why you decided to write it?

Lianne Mandelbaum: In the media, there has been an increasing, alarming amount of jokes about people with food allergies, whether it’s flying or on the ground, whatever it is. And there are a lot of detractors who say you should just ignore it, that you’re giving the comedian, or whoever wrote the piece, a little more spotlight, and you should just be quiet and it will go away. But I think silence normalizes the abuse.

And what’s happening is you see things like a boy who died from having a piece of cheese flicked at him in primary school in the U.K., and they thought it was hysterical; he had a dairy allergy. There’s a teacher in Ohio who was anaphylactic to bananas, posts all over her classroom. They smeared it on her doorknob, they threw the banana at her, and she ended up with anaphylaxis in the hospital. There’s a comedian who says he’s going to pour peanut oil all over himself, and because it’s invisible, he’s going to sit on a plane and see who he can kill. I mean, obviously they’re not trying to get people to do that, but there are people who think it’s funny, and they don’t think that food allergies are serious. They think it’s a runny nose.

And this seeps into the public consciousness, and it makes my child and other people like him less safe, because it perpetuates the most common myth, that food allergies aren’t serious. The other myth is that the EpiPen, or any auto-injector, is a miracle, and we know it’s not. It helps, it helps to get it in quick, but there are cases where people have died. And so it’s not enough to say, “I’m just going to do this to someone because it’s not going to end in death, you can laugh at it, ha ha ha,” because, you know, it can end up in a fatality, and that’s not funny.

And over and over and over again, people are joking about it, and I just think that we need to have this third rail as a food allergy community and say, “This is not OK. We can’t go there. It’s not acceptable. It’s a legitimate medical condition. People shouldn’t be bullied.” And I see from collecting my testimonials that people are bullied. They’re made fun of in the air. There’s a grown woman who’s allergic to shrimp, and the flight attendant started laughing. And she said when she went into the bathroom, they were like, “Don’t go in there, we think there could be shrimp there.” And then she said she was terrified to go back to her seat because she didn’t know what they rubbed on it. This is not OK. Would you do this to anyone with a visible disability?

And that’s the thing: Food allergies are invisible until they’re not, and I just think that we need to start thinking about it the way we think of other disabilities. I think that if we saw these jokes about any other condition, the physicians who treated those patients would be up in arms, like, “No, you can’t make fun of this.” Well, why is it OK? I often say that food allergies are the Rodney Dangerfield of disease. We just don’t get respect.

And it’s not all about having anaphylaxis. It’s not about dying on a plane. It’s about being cut down or made fun of, or maybe one day you don’t take a job because you don’t want to have international travel. I mean, there are consequences to this bullying. There was just a study that came out a few weeks ago at the College that, I think, said 17 of parents reported being bullied. It’s not just the children.

And in my advocacy, I really fast-forward to my son growing up. If he’s on a flight with me, I’m going to stick up for him. I’m going to lobby for his rights. But I fast-forward to him one day as a young adult. I don’t want him to be scared to reveal that he has a food allergy, or anybody else, and then have them inadvertently be exposed to their allergen, because, as we discussed, there’s no risk-free environment, and the flight attendants wouldn’t know. It could look like he passed out. It could look like he was drunk. I do know someone who they thought was drunk, and she had anaphylaxis and had passed out. So if you don’t know how to give the auto-injector. So there are consequences.

And I think we need to have the physicians who treat us understand that this is happening, and we need to say, “This is not OK. It is a legitimate condition,” and also to educate the public on the potential danger, so it’s not made fun of in the movies, it’s not made fun of, you know. One of the daytime hosts, I don’t want to reveal who it is, was joking about seeing a counter of tree nuts. He walked into a giant candy store and goes, “Oh, EpiPen me now,” and threw the pen in his neck. That’s not funny. This particular person has a child with diabetes. Is he going to walk into a candy store and start talking about diabetic shock? I don’t think so. And if somebody else did it, would he be outraged? Oh, yes, I believe he would. So why is there not the same respect shown to food allergies?

And so that’s why I wrote. I know, so long. I get very heated when I talk about this. But if you miscalculate a reaction in the air, or even on the ground, you could have fatal consequences, and so we need to start respecting food allergy a little more.

Kevin Pho: Now, when you speak out against these comedians and write articles like this saying that food allergies are not funny, what’s the normal response that you get whenever you speak out against people who make fun of food allergies?

Lianne Mandelbaum: You know, it’s mixed, and that’s why I get so upset, because there are people in the food allergy community who think that we’re encouraging these comedians if we speak out. Then there are people, if you go on the comedian’s page and you start sharing things, oh, it’s not pretty. I mean, I have had people tell me that my son should fly in pet cargo because, LOL, he won’t be exposed to the nuts there. I’ve had people write comments that it’s Darwin’s plan, that if my son is so sensitive, he’s meant to die from a nut and I should just success that. I’ve had people throw anti-Semitic comments my way, saying only entitled Jewish, whatever, I won’t even say the insult, mothers who are hovering are worried about nuts on planes. I’ve had people threaten to find out where I’m going to be flying and bring peanuts on planes. So it runs the gamut. It really does.

And then I’ve had people like our personal allergists, Dr. Hugh Sampson and Dr. Scott Sicherer and Dr. Anna Nowak, write me these beautiful comments and letters, that they didn’t realize their patients went through experiences like that. So I’ve also experienced the flip side, the enormous support once the stories come out, that people don’t want their patients being treated this way.

So I think it is important. People weren’t writing about this. It’s one of the reasons I started writing. I’m like, “Well, if there’s not a voice, then I at least am going to share my voice.” I might not be representative of the 32 million Americans who have food allergies, but I can share a perspective and perhaps get a little more empathy and compassion, if people can really look into the hearts, lives, and minds of someone with a food allergy.

Kevin Pho: We’re talking to Lianne Mandelbaum. She is the founder of the No Nut Traveler, and she wrote the KevinMD article “Food allergies are not funny.” Lianne, what kind of advice can you give to the medical community that can help address some of the issues that you’re bringing up?

Lianne Mandelbaum: I think it’s important to ask the questions about travel, because maybe not right now, while we’re in a pandemic, but for the most part, in the world that hopefully will be coming back, the world that was before this, it’s a global economy. People travel. There’s a need to travel. There are patients who need to see ailing grandparents or a sick relative. I mean, there is a, and I’ve also had patients traveling with, say, cancer, and they have to travel to the United States. And this person wrote me, “How am I going to travel? I’m scared about my son with the allergy.” That should be the least thing on her mind. I mean, I just sat and cried for hours after I got that email, because it should be OK to fly with a legitimate medical condition and have it respected.

So I would say, also, people don’t understand. Patients, I find that you have to do your own research. You can’t all of a sudden show up at an airport on an airline like American, for example, that does nothing. Now they pre-board, because we forced that out of the DOT complaint, but they still will serve what you’re allergic to and won’t let you make an announcement. It’s so crystal clear in their policy. If you show up and then you’re surprised, well, that’s not OK either.

So I’d say physicians need to tell patients: Do your research. Always carry your auto-injector. I mean, I’ve heard these stories of people flying without their auto-injector, or they put it underneath the plane. So tell passengers to keep that auto-injector with them, not in the overhead bin, not underneath. Also, have an action plan with your physician’s signature on it, so that when you tell the staff you have a food allergy, you have a plan from your doctor, so they don’t think you’re hysterical or making it up or have a runny nose. So that’s really, really important.

It’s also really important, I think, for physicians to tell their patients to be respectful to the crew, because they don’t understand what a food allergy is. It’s not their fault. There’s no education. There are no auto-injectors on planes that are standard. So how do they know what they don’t know? So just toning it down a little, because in this kind of environment, you can get thrown off a plane very easily, and no physician would want that to happen to their patient.

Bring your own food. That’s one of the biggest things. I get stories of anaphylaxis in the air, and someone’s taking chocolate cake. Yes, the crew member told them there were no nuts in it, but what are you doing taking chocolate cake up in the air, right? You know the recalls on the ground, every day. Up in the air, we can bring our own food. This is a risk we can eliminate. So I think just hearing those kinds of things from your physician: not expecting too much of the airline, but also not expecting too little. Do your research, carry your auto-injectors, and pre-board, which we now have a guaranteed right to in the United States under the Air Carrier Access Act, which now recognizes food allergies as a severe disability. So that is wonderful, but you actually have to do it.

You have to pre-board, get on there, and wipe down that area. Then you have mitigated most of your risk, because most of the risk is going to come from inadvertent eating of the allergen, something left there before that you then combine with your fingers, or you rub your eyes. It’s mostly going to come from ingestion, so we can cut that out. But we might not know that as patients, especially if you’re just diagnosed. You haven’t thought those steps through for travel. So even if a physician takes 30 seconds to say, “Look, these are the things you should do when you’re traveling, and you’re going to be OK,” and just giving patients confidence, too. There are a lot of people who are afraid to fly, and I don’t think that’s OK either.

So just having the conversation, I think, is the most important part, but also respecting and listening, to see if patients are going through disconcerting situations, and not dismissing them if it’s not anaphylaxis, because it can be psychologically damaging, I think. Even if you have hives all over your body and you just have a little bit of a throat closing that doesn’t lead to your auto-injector, you know, tighten it, whatever it is, that’s still disconcerting to have in the air. So don’t dismiss it. I feel like we’re dismissed a lot.

Kevin Pho: And my final question: What is your take-home message that you want to leave with the KevinMD audience?

Lianne Mandelbaum: My take-home message is we can fly safely as food-allergic patients. We need education of the staff. We need education from our physicians to the airlines and to their patients. And we need an increased awareness and compassion that these things do go on, and that we have support. I think that once we get that, we can be a powerful force. And also recognizing that these jokes are not funny. I know nobody wants to tackle the comedian, especially the popular ones, and nobody wants to get letters written to them like the ones written to me, but it’s OK. We need to, all these kinds of issues.

I wrote a previous article for you on the same topic, talking about things that used to be OK to be said to people that aren’t OK now. I think this is where we need to put food allergies. It’s not OK. Maybe it was funny years back, and it still wasn’t funny then, but maybe we lived in a different society. But we’ve evolved, and this is a legitimate medical condition. So we’re to ask everybody to have a little bit of compassion.

And I think the current crisis, even though you can’t compare COVID to food allergies, the fact that when you fly now, you have to worry that you’re going to catch something, that you wipe everything down fastidiously, this is what we live with. So it’s given people a little bit of a taste of what we have to do on every single flight, because we don’t want to be in contact with our allergen. And so I’m hoping there’ll be increased compassion from physicians and the greater public community on flying, and when we’re done with this crisis, I hope that flying will be safer and a more pleasurable experience for people with food allergies.

Kevin Pho: Lianne, thank you so much for your time and insight, and thanks again for being on the show.

Lianne Mandelbaum: Thank you so much.

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