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Physical therapist and food allergy advocate Lianne Mandelbaum discusses her article, “Flying with food allergies: Combating misconceptions and advocating for safety.” Sharing harrowing personal experiences with dismissive airline staff that ignited her advocacy work with No Nut Traveler, she highlights the pervasive fear and inadequate safety measures faced by food-allergic passengers globally. Lianne discusses concerning findings, such as a study showing 31 percent of passengers sometimes don’t disclose allergies fearing penalties, over a third experiencing unprofessional staff behavior, 70 percent not receiving promised accommodations, and over 12 percent being removed or denied boarding. The conversation critiques misleading media coverage, the dismissal of non-fatal reactions, the alarming lack of required easy-to-use epinephrine (like auto-injectors or nasal sprays) in many airline medical kits as of 2025, and insufficient allergen labeling on U.S. flights. Lianne urges passengers to report incidents and calls upon airlines for better policies and training, and the medical community to counsel patients proactively and advocate strongly for systemic changes, including mandatory epinephrine stocking.
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome back Lianne Mandelbaum. She’s a food allergy advocate. Today’s KevinMD article is “Flying with food allergies, combating misconceptions, and advocating for safety.” Lianne, welcome back to the show.
Lianne Mandelbaum: Thank you so much for having me, Kevin.
Kevin Pho: All right, so tell us what this KevinMD article is about.
Lianne Mandelbaum: This article, just like its title suggests, is to combat misconceptions. I’m sort of two-pronged in my approach here. I want to combat misconceptions that physicians may have about flying with food allergies because if there’s one thing that’s pretty consistent, it’s that there’s not enough time in appointments to discuss travel. Even the most well-intentioned physicians may not get to that part of the conversation. If they’re not an allergist, which might be who’s taking care of this population, they might not know to even ask.
And then the other misconceptions are for the general public and also the food-allergic flyer. I want to try to spray it everywhere: give everybody tools where they can make this safer. It’s really not that difficult. The tools are there. I want to explain some of the data that’s out there that leads to some of the misconceptions, and then some of the data that I think is pretty good. Hopefully, people leave with an empowerment of how to fly safer, how patients can fly safer, and what the general person that doesn’t have a food allergy can do with really little skin off their back to help somebody else.
Kevin Pho: All right, so maybe we can divide that into those two audiences that you mentioned: the physicians and the general public. What would you say are some of the biggest misconceptions among the physician population about food allergies?
Lianne Mandelbaum: I think that it’s really important to realize that anaphylaxis is not the only reaction that should get you worried about your patients flying. I don’t think anybody wants someone covered in hives or struggling to breathe. I’ve taken testimonials of all of the above, and we have really good data coming out of Northwestern with Ruchi Gupta and Chris Warren’s group, with 4,704 people in a pretty robust survey, that these reactions are taking place, and they’re taking place at higher rates than some other studies.
I want to go into explaining why because if you just are reading the black and white studies, you might think, “No, I’m going to believe the clickbait headline.” A study that came out of the U.K. in the Archives of Childhood Disease pretty much led to conclusions and clickbait headlines stating that you are actually safer in the air than you are on the ground, you’re less likely to have a reaction, nuts are overblown. It was all these kind of terrible headlines suggesting that there really was very little risk, that the amount of reactions haven’t been going up over time when they looked at this study.
Here’s the problem: the data quality is so, so low, and it’s not the researchers’ fault. Where is the data from? The data is from the airlines themselves, who are not required to collect any such data, and then the data is from the ground-to-air medical providers of the kits. The problem with that is, in our survey of 4,704 people out of Northwestern, we showed that 90 percent of people use their own autoinjectors. If those kits are not cracked, that data’s not counted. The other thing is, even if the person uses their autoinjector, we have data showing that they don’t report the reaction, so those aren’t going in. And then there’s the fact that if a medical professional’s not called and you use your own autoinjector, which is also a lot of reactions, that data doesn’t go in.
You’ve got these really high-confidence headlines and even conclusions drawn by the people who wrote the paper, but very low-quality data going in. I want to read—I wrote it down on a piece of paper because I didn’t want to mince the words. This is from the Aerospace Medical Association that tracks these reactions. It says, “It is not known with certainty how many in-flight medical events occur each year since there is no internationally agreed recording classification system.” It’s not required. And the people who do decide to record these incidences, there’s no consistency. You don’t know what you’re recording, and no one’s collecting it.
I can tell you, wearing my hat as airline correspondent for Allergic Living, I have contacted the FAA multiple times, and they have said to me every time, “We do not require any tracking of these medical emergencies insofar as tracking the reaction.” So they don’t require it. The airlines are self-policing, and the medical kit data is incomplete. How on earth are you coming to these conclusions that your patients are safe in the sky?
Am I saying there’s a huge amount of risk? No, because there are things we can do, and hopefully, people are doing them to keep safe, and we’re going to talk about that. But you can’t look at me straight in the face and tell me that as the global epidemic of food allergies has gone up, and as the adult-onset allergy aspect of this epidemic has skyrocketed with no explanation, and that the biggest two trigger foods for adult onset are tree nuts and shellfish—and what is still being served on planes—you cannot possibly tell me that this is not happening just because the way you try to capture the data didn’t show it. I think what the Northwestern study showed versus the Archives of Childhood Disease study shows is that we have a lot to do. There’s more data needed; there’s more quality data needed. I’m hoping that’s going to come across.
The other misconception that I have come across over and over and over again is the fact that physicians have no idea that in the air, the labeling laws that are on those meals that you get, even with the label, don’t have to be complete. The FDA literally told me when I wrote an article for Allergic Living on what was going on—because I was seeing so many social media posts and doctors were sending me patients that went into anaphylaxis in the air—and one of them was to a meal of pasta and red sauce, and there were tree nuts in there, not listed on the label. Milk was listed, wheat was listed, egg was listed, but tree nuts were not listed, yet they were in there. The person goes into anaphylaxis. I contact the FDA. The FDA says, “We like transparency, we encourage transparency, but we don’t require it.”
If physicians don’t know this, they can’t pass it on to their patients. And then that’s a completely eliminable risk. You can eliminate it if you just have that quick conversation. The other thing physicians don’t always understand is that you can really find argumentative flight attendants. You can find people who don’t know about food allergies at TSA and going through security, and it could really help to say, “This is my patient. They have a food allergy and they need to carry their safe medications and foods.” It tones down the argument that the passenger could potentially have with the airline staff member. It just makes it so much better.
Those are quick things: have a quick conversation. Tell your patients not to take the food. Tell them to carry their medications. Tell them to pre-board—a right in the U.S. that we fought really hard for—not because they want to one-up anybody, but because their luggage won’t get gate-checked with their safe food and their medications. That has happened, and then people go into anaphylaxis, and where is the medication? It’s under the plane. We could do that.
Also, research your airlines, right? Because there are certain airlines. You could go to my website, No Nut Traveler. You could look at some of the other testimonials from people. But you can also just go to the airline’s website and look at their policy and not be surprised. There’s someone on American Airlines that was told to stand at the back of the plane for two hours while they served tree nuts because they were going to continue to serve them. American Airlines will tell you that in their policy—not that they’ll make you stand at the back—but they’ll tell you, “We’re not going to do anything to help you.” It’s really empowering for you to research or encourage someone else to research because that puts the power back in their hands, and they’re not helpless at the airlines. That’s a big thing.
Kevin Pho: Just piggybacking off that last point, in terms of U.S. domestic carriers, their policies regarding food allergies, is there a wide variation between them among U.S. domestic carriers?
Lianne Mandelbaum: Yes, and there’s no incentive for them not to follow their policy. There are often no timely repercussions for an airline. I collect countless testimonials on airlines that have fair policies, and then it’s up to the crew, and then the crew doesn’t follow it, and there’s really no repercussion. You’re lucky if you get a voucher, if you get anything.
I think that the Northwestern study also showed that 98 percent of people flying with food allergies have anxiety. It’s not anxiety because these patients are anxious; it’s anxiety because you don’t know what crew you’re going to get. It’s anxiety because it’s essentially a spin of the roulette wheel, and every single time it’s like an n-equals-one. You could fly United today and have a great experience and fly them home in a week and have a terrible experience. There’s no rhyme or reason, and that is another way patients and physicians together can advocate for better.
You have to advocate to have consistent policies. You have to advocate for food allergies to be labeled as a real disease because when it’s not labeled as a real disease and these policies aren’t followed, you think it’s harmless. When somebody laughs right at an announcement, they’re not really going to do anything. But it’s not harmless because it trickles down into customer service, and it trickles down into the people around who are going to treat this person. It trickles down to really harming your patient and feeding into the stereotype that food allergy is not a real disease. We already know with an invisible disease, that’s an uphill battle to be taken seriously.
I would say that, and if we’re going to discuss one more misconception among physicians, I’ll tell you an anecdote. Everywhere I go, I find someone with a food allergy. I was having a biopsy for something at a mammogram that turned out to be completely normal a few weeks ago. To distract me, they were asking me what I do. We started talking, and the doctor asked, “They’re EpiPens on planes, right?” I replied that this is another fact that most physicians are not aware of, and patients flying aren’t either: no, they are not required. They are not required on airlines.
What is required is the vial and syringe, but those vials and syringes are under an exemption under the FAA. Those planes can take off without the allergic concentration of epinephrine. Therefore, that is why I have taken countless testimonials from physicians who have found empty vials, stickers that say “no epi in kit,” or cardiac devices that have to be somehow jerry-rigged by an orthopedic surgeon that I interviewed. The guy I spoke with said, “There’s going to be an EpiPen for me, right? I’m just the radiation oncologist.” And I said, “No.” He replied, “Nobody’s going to call on me.” I asked, “What if you’re the only one?” I’ve taken testimonials from physicians in that exact situation.
That’s not an outlier. Almost everyone I meet thinks that they are on planes. The nurse who was helping this doctor with my procedure said, “I have a tree nut allergy. I got it as an adult-onset allergy. I didn’t know I shouldn’t take the meal on the plane. Thank you.” This is where we’re at. That’s why your platform giving patient advocacy a voice is so very important—because we’re not reaching the people we need to reach.
We are waiting for a preventable anaphylaxis tragedy to happen, and it’s preventable because these things don’t have to happen. You don’t have to take the meal. You don’t have to gate-check your bag with your safe medication. You don’t have to stay silent. Thirty-one percent of people stayed silent because they’re scared of repercussions from the crew. The problem with that is, what if they don’t know that you’re having anaphylaxis? We know now they don’t have to have the right tools in their kit. How are they going to know where your safe medication is if you’re passed out?
When I was working on the legislation for the FAA Reauthorization Act, which does have language that we hope will lead to airlines in two years putting autoinjectors or epinephrine nasal spray on planes, people just don’t understand that it’s not there yet. When I was speaking to the legislators on this, they said the American Heart Association lobbied so hard to get those defibrillators on planes, and what we need is the same kind of concerted effort from physicians because you don’t want to be that physician on the plane called up. You want the best tools for a positive outcome in the air.
We know epinephrine works best when it’s administered quickly, and it’s going to get in quickly with an autoinjector. One of the first articles I wrote for you was about a first-time reaction on a plane, and the person who was called up was a helicopter nurse. This is someone who worked in the ER, and she still crowdsourced the plane to borrow someone else’s autoinjector because the kid was going downhill so quickly—and it was a first-time reaction to a bowl of warm tree nuts—that she felt that if she took the time to get the right dosage for a child from the vial, the child would die. That’s what she told me.
This is an experienced nurse who is used to working on the fly, so to speak—not to make a pun about the helicopter nurse. But if she’s not sure she’s going to administer it in time, how is someone who doesn’t necessarily do this all the time going to know? These are real problems.
Kevin Pho: You also mentioned that there are misconceptions, of course, among the flying public as well. What are some misconceptions that are specific to them?
Lianne Mandelbaum: I intercepted a tweet the other day that I shared that said, “Ugh, I’m on this plane, and we can’t have our peanuts because one passenger decided to have a peanut allergy.” Nobody decides to have a peanut allergy. Food allergies are not a fad. They are not put there to inconvenience you. We wish we didn’t have to inconvenience you. Food allergies are one of the invisible conditions where we need some cooperation around us to stay safe. I don’t think it’s a big ask to keep that person, especially in the immediate area around them, from being exposed.
But there’s still this persistence in popular culture, and the jokes don’t help. I’ve written many times for you on the jokes seeping into the public consciousness, and this is what I’m talking about because these people making these tweets are potential passengers, and there are lots of them. I’ve taken testimonials of real-life passengers. Just like people say, “Don’t worry about the people that are saying this on X. They’re not the real people you’re going to encounter,” but oh yes, I’ve taken testimonials of plenty of real people like this. They are the people you have to encounter often. It’s important to educate the public on what a food allergy is and what it isn’t. What it isn’t is a choice, a diet, or a fad. It’s a disease. You can’t control the disease any more than you could control your heartbeat. It’s something that’s there. That is a big misconception.
One of the other misconceptions is that the nasal spray or the autoinjector is a magic wand. Most of the time, thankfully, it works; it doesn’t always work, so you don’t want to test it. That same passenger that was told to stand at the back of the American Airlines plane for two hours—the flight attendant also asked her if she could use the EpiPen prophylactically on her son that she had. A lot of people think you can just do that. “What is the problem? Why are you telling me not to eat my snack? Just use your EpiPen. That’s what you have it for.” That’s a big misconception.
I think that we have a long way to go in educating the public on this. We’re definitely making headway, but I think not just for the patient community but for the physician community, there just has to be a third rail on these jokes where it’s not funny. These misconceptions are going to lead to a real-life medical emergency. Watching someone not being able to breathe is not funny; it’s a medical emergency. We need to be really forceful on that. I know people say you have to laugh at yourself, but this really is something that’s not funny.
Kevin Pho: We’re talking to Lianne Mandelbaum. She’s a food allergy advocate. Today’s KevinMD article is “Flying with food allergies, combating misconceptions, and advocating for safety.” Lianne, as always, we’ll end with some take-home messages. What do you want to leave with the KevinMD audience?
Lianne Mandelbaum: Talk to your patients; talk to your doctor. It goes both ways. Get a letter; write a letter. Share your reactions with me, but share your reactions with your medical professional. People on both ends of the spectrum, please lobby wherever you can to have the right medication. It could be you one day. Even if you think this doesn’t have to do with you because you don’t have a food allergy, we do have a skyrocketing epidemic of adult-onset allergy. It could be you, it could be your child, it could be your spouse, it could be your best friend that needs this medication, and it’s not there. It’s a preventable tragedy. We have a unique opportunity here to do that.
I think we need to try not to laugh at the jokes. Even if you hear them, say, “OK, I get what you’re saying, but this is why it isn’t funny.” I’m not saying we need to ban speech or censor speech, but I think we do need to counter bad speech with good speech because that’s how dialogues happen. Dialogues don’t just happen by having the joke. People like to tell me, “Oh, comedians like to push the boundaries, and they get us to think, and you need to have some patience.” I’m done with the patience because this has been going on for over a decade, and it never leads to a conversation where there’s change; all it leads to is solidifying stereotypes. I’m not saying they can’t say what they want to say, but I am saying we need to speak up and counter it with good speech because that is the way. Education is the way.
When you educate a crew, you don’t get a crew that doesn’t take it seriously; they take it seriously. You also don’t get someone that kicks you off because they think you’re going to land the plane. No, just let me take these few precautions: I’ve spoken to my physician, I’ve researched your policy, I’m carrying my medication, I have my own food, I’m just telling you where my autoinjector is in case. That should be it. We should all be outraged when that person—and I have met that person—that has done that has been thrown off for disclosing their allergy. We should all be outraged at that. That’s what leads to fear and hiding.
That’s what I worry about as a mother. I worry about the whole food allergy community because we do feel each tragedy as if it was a family member. I can’t explain it; it’s just like your tribe, and that’s how you feel it. We don’t want to see this happen to anybody else. That’s I think why we advocate so hard.
I also told the story in the beginning of this article of how I had a bad experience way before I started my advocacy. But I kept silent because it ended up OK. I was spoken to terribly by an airline employee because I got upgraded to first class—two of us in our party—and my son and I sat there because I thought someone wouldn’t open a peanut butter sandwich there. When I informed the flight attendant—he was two, so he’s cute, he’s in his car seat—I informed her he had a peanut allergy. She said, “Well, have fun on this flight because I served peanuts to the whole flight before you. Good luck cleaning up all those crumbs. And by the way, I’m going to serve the nuts all around you anyway.”
She literally said that to me, and I was like the deer in the headlights. I didn’t say anything. But then, as I describe in the article, something incredible happened: the people stood up around me and said, “We don’t want the nuts. Don’t come and bring the nuts.” We landed. I was so happy nothing happened, and I forgot about this woman. I should have filed a complaint, and this is what I encourage people to do now. It was a missed opportunity.
You are silenced because you don’t want to be different, you don’t want to be made fun of, you’re just happy that your kid is alive and safe by the time you land. Tell your stories. Talk to your doctors. I didn’t tell my doctor, so he had no idea. In fact, when I wrote my first article, our long-time allergist, Dr. Hugh Sampson, said, “Thank you for writing this. I didn’t know this was happening to my patients.” That’s where I come from with that.
Is that enough to leave you with? I could go on forever, you know this.
Kevin Pho: Lianne, as always, thank you so much for sharing your perspective and insight. Thanks again for coming back on the show.
Lianne Mandelbaum: Thank you for having me, Kevin.