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Lianne Mandelbaum, a leading advocate for airline safety measures to protect food-allergic passengers, discusses the article, “Navigating the uncertainty of food allergies in air travel: a call for compassion and change.” In this episode, Lianne shares personal insights into the challenges faced by travelers with food allergies, highlighting inconsistent airline policies, societal skepticism, and the urgent need for standardized procedures. She explains how simple accommodations—like pre-boarding cleaning and effective crew training—can make a critical difference in ensuring safe air travel. Lianne outlines actionable strategies for passengers and airlines alike, emphasizing the role of empathy and proactive policy changes in transforming the travel experience for food-allergic individuals.

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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 patient advocate. Today’s KevinMD article is “Navigating the uncertainty of food allergies in air travel, a call for compassion and change.” Leanne, welcome back to the show.

Lianne Mandelbaum: Thanks so much for having me again.

Kevin Pho: All right, so for those who didn’t get a chance to read your article, just tell us what it’s about to catch everyone up.

Lianne Mandelbaum: It’s about what you just said—calling for compassion and change in airline travel—and it really stems from educating the greater public, and even the physicians and medical staff that treat us, on just how challenging it can be when a food allergy is not recognized as a legitimate medical condition in the air.

A lot of people are not aware of the situations that their patients or fellow citizens face up in the air with a food allergy. Most importantly, insofar as other passengers and airline crew, people are not aware of what a food allergy is or why you can’t answer the question, “Is this a severe allergy?” because every reaction is an N = 1 to itself. We wish we could answer it. If only it was that simple, and I could say, “I’m the person who is not going to react on a plane, and so I don’t need to tell the people around me. I’ll be just fine.” Finally, it’s about empowering people to take steps to be safer, and it can be done. That’s part of my work as well.

Kevin Pho: I know you’ve been working on food allergies and that connection with airline travel for many years now. You’ve been on the podcast several times talking about that and sharing your story. Have things gotten better? Has the needle moved since you started your work?

Lianne Mandelbaum: I think the needle has moved insofar as I do think we have greater public awareness of food allergies in general. Since we last talked, there was a survey of which I was a co-designer and co-author that was published in the Journal of Allergy and Clinical Immunology out of a team led by Ruchi Gupta and Chris Warren of Northwestern that surveyed almost 5,000 people with food allergies. It has produced some really good data that, for the first time, I think, catches up to the patient’s lived experience. Then that data gets picked up by more mainstream outlets, and you do see a little more awareness and education. So the more that we have efforts like that, and the more that good and bad experiences are talked about on social media on platforms such as this, I do think there is greater awareness.

However, one example I gave in the article—and it’s not the first time I’ve heard it from this airline—was a situation where the crew asked a mother and son to stand at the back of the plane for two and a half hours while they served tree nuts. It struck me as such a lack of education—between the fact that the auto-injector is not prophylactic, not being able to tell people around you, and not taking the condition as a serious medical condition. That tells me we still have so much more to do, but I do see positive change.

For a decade, I’ve been working with different legislators to get the right medications in airline emergency medical kits. In the 2024 federal reauthorization of May of last year, we did get the wording in there to have the right medications for allergic reactions. We’ll see what happens. The FAA has a two-year clock to make those changes, and they are wide-sweeping changes in the emergency medical kit. It’s not just for allergic passengers—it’s updating all the medications, because there hasn’t been an update since 2004. That should make everybody’s head spin. The planes just don’t have to have a medical kit that mirrors the conditions of the century we’re living in. That’s not what we have right now. We have voluntary guidelines, but if they want to upgrade, great. If they don’t, there’s no guidance. This is something that needs to happen. I’m cautiously optimistic—or maybe pessimistically optimistic. We’ve been down this road before, but I think there’s a shift.

Kevin Pho: Other than including things like auto-injectors in the plane’s safety kit, have there been any meaningful changes in terms of actual policy or procedures in terms of showing empathy and compassion for those with food allergies over the years?

Lianne Mandelbaum: Maybe there’s been a little more awareness. I want to step back to the auto-injectors because the language says the right medications to treat anaphylaxis, and now we have nasal epinephrine. There are choices now, so it could be either. It’s really easy-to-use epinephrine, where you don’t need a medical professional, meaning the vial and syringe. That also gives airlines choices—people treating the allergy have choices. I’m hoping with more choices, more airlines will choose to stock. Unbelievably, one airline—Delta—has revamped its entire emergency medical kit and voluntarily put Narcan in it but will not put in an auto-injector or the nasal spray. We don’t know what we’re going to get until it’s mandated. Really, it needs to be mandated.

You get voluntary recognition from airlines, and they have policies, but there’s nothing across the board. That’s really what we fight for because one of the things the survey exposed, which was quite remarkable, is the trends are global for what passengers are experiencing. Wherever you are in the world, these are the kinds of issues you face on airlines. This has to change. Change is slow. It took a decade to get even the wording shifted for the FAA reauthorization. In my years of advocacy, I’ve honed patience, which is something I probably didn’t go in with. Even just being on this podcast, writing articles, and exposing the situations—which not everybody is even aware of—is positive. There have been articles in mainstream media about reactions on planes, and I think that helps because people don’t understand it.

That’s one of the things I really want to get across to your viewers, especially those treating not just allergic patients but also people with celiac disease and intolerances. Airlines are not subject to the same labeling laws that we have on the ground. You can take a meal in the air that lists ingredients, as I’ve seen in several testimonials, and it doesn’t list your allergen, but it can still be in there, and it’s legal. My advice to anyone treating or anyone listening with an intolerance or allergy, especially celiac, is please do not accept the airline meal. It’s a risk versus reward. There’s no upside. This is a risk we can completely eliminate. The physicians of the people who have reacted did not know to warn them not to take it; they didn’t know about these labeling loopholes. So how is the average person going to know?

Kevin Pho: We’re speaking in February of 2025. For my viewers to understand what those with food allergies have to go through before they travel, talk to me about some of the precautions they have to take.

Lianne Mandelbaum: First of all, you have to talk to your physician before you go away because everybody is different and everyone has a different risk. It’s important to have that conversation. Not only that, it’s really important to have a letter stating, “This is my patient. They need to travel with safe food and medications,” so that you don’t want your patient—and sometimes this happens—you don’t want them to argue with airline crew. It doesn’t end well these days. They’re under a lot of stress about many things besides allergies, and having a letter that says, “This is my patient, they have this allergy, they need to carry their safe meds,” can be critical. Sometimes I’ve heard of patients being thrown off a plane for not having an auto-injector. Have the auto-injector, and I tell people to save the box. Even if you carry it in a carrier, push the box down, and keep it in your carry-on luggage, because every once in a while you’ll get a TSA agent asking, “Is this yours? Where’s the label?”

Research the countries where you can’t bring in certain types of food, like fresh fruit from a country you’re not allowed to bring on the plane. Then bring your non-perishables that are sealed as your safe food. Always pack double the amount to account for delays. You could be stuck for hours in an airport that doesn’t have safe food, or in an airport in the middle of the night when the food stores are closed. You have to prepare. You need wipes with alcohol to remove allergens from surfaces, which is why you need to be able to pre-board the plane.

Also, if you live in the United States, register for a program called TSA Cares, because then they don’t necessarily take the food out and inspect it. I’ve had testimonies from people with dairy allergies or those who have safe formula, and it’s been confiscated by TSA or ruined because they haven’t changed gloves after handling someone else’s food. There’s a lot more you have to think about than the average person. But if you take all these steps beforehand, you can really lower the stress. The other thing that the survey out of Northwestern showed is that 98 percent of people flying with food allergies have anxiety, which stems from uncertainty—uncertainty whether policies are going to be followed, uncertainty about what’s going on with food inspection. Have a checklist of things you need to do so at least that stuff is out of the way.

Of course, always carry your auto-injectors or epinephrine nasal spray. It sounds so simple, but there was a woman who went into anaphylaxis on a plane—thank God an ER doctor was on board—and she took the wrong purse. They had to use the vial because, again, airlines at this moment are not required to stock an easy-to-use auto-injector or nasal spray. The vials that they are required to have are under an exemption with the FAA, which means the plane can take off without them. I’ve interviewed countless physicians who opened up a kit and found a sticker that said, “No epi in kit.” They’re allowed to fly without these medications. So it’s really important if you know you have an allergy to carry those meds and not to put them under the plane.

Another story: a girl took the airline meal again—she had a tree nut allergy, took the pasta, it wasn’t listed in the ingredients, and she went into anaphylaxis. Where was her auto-injector? Under the plane. That’s another reason why pre-boarding is so essential, so that you don’t have to gate-check your luggage, which is what happened to her. She was one of the last boarding groups, and they took the suitcase and put it under the plane, and she forgot. It happens. We’re human. People often judge us, saying, “You should have carried it, you shouldn’t have taken the meal,” and so on. It’s really nice to lob these accusations, except we’re all human and we all make mistakes. I really want people to have a little more compassion.

Kevin Pho: We’re talking to Lianne Mandelbaum. She’s a patient advocate. Today’s KevinMD article is “Navigating the uncertainty of food allergies in air travel, a call for compassion and change.” Lianne, as always, let’s end with some take-home messages you’d like to leave with the KevinMD audience.

Lianne Mandelbaum: Please, don’t take the airline meal. That’s number one. Don’t take the airline meal, and educate your patients—no matter what disease they have—that they need to watch their diet and not take the airline meal. Research airline policies. Tell people to research their airline policies. The airline that actually told the people to stay in the back of the plane—I am not by any means saying that’s OK—has a policy that says, “We will serve tree nuts around you.” If you look on my website or do a little research, this is something that they do.

Check code shares because you may be flying, for example, British Airways, but they code share with American Airlines, and British has a great policy but American doesn’t. Know that if someone around you is asking you not to eat the allergen, it’s not to take away your favorite snack. One of the examples I gave in the article is on social media, people will see that a reaction doesn’t happen and think it’s fake. No, we just don’t know if it’s severe or not. That’s not how allergies work. Most fatal reactions happened to people who had a previous mild reaction. We wish we could answer you. We’re not hiding that we don’t know if it’s severe or not. That’s just not how allergies work. One day, hopefully, there will be a test that says, “You’re going to be the one who’s OK with cross-contact, the people around you.”

If someone is pre-boarding a plane, do not look at them with disdain. They’re doing it to clean the area, because that’s your biggest route of exposure. You can’t control many things, but you can control cleaning the area. You can’t control who sat in the seat before you, but you can control wiping it down. That’s again why we pre-board. We don’t pre-board to one-up you. We’re not trying to get extra luggage space, except for the fact that we need to keep our safe meds and food with us. When I’m not traveling with Josh, I’ll see other people pre-board in multiple groups before me, and sometimes people grumble about how many boarding groups there are. I’m just grateful I don’t need it. Let them pre-board. I assume if someone is pre-boarding, they have a reason, and I’m not going to judge, because many disabilities are invisible. Be thankful you don’t need it. There’s no privilege in being on your hands and knees, scooping underneath the seat to see if there’s a trace of an allergen, or getting inside the seat pocket—which is disgusting—and wiping all around. That’s not a privilege. You might think it’s a privilege because I’m getting on the plane before you, but it’s not.

For physicians, give patients a note. It seems simple, but it can take away confrontation with a staff member. If you ever have a chance to talk to people on an airline, talk to them about food allergies and why they should implore their employer to carry the right medications. Most flight attendants actually want to be able to help passengers. Educating passengers and flight crew that an auto-injector or nasal spray is not a magic wand—it can buy you time, but if a reaction is very severe, it might not be enough. Please show compassion. People really think we’re trying to one-up them. We’re not. The survey showed that 31 percent of passengers are hiding their food allergy because they don’t want to get in trouble. The problem is if my son or someone else is inadvertently exposed and passes out, what if the flight attendant thinks they’re drunk or they’re confused? They wouldn’t know because the flight crew doesn’t carry the right medications. They wouldn’t know where that person’s auto-injector or nasal spray is. That’s what I worry about. So don’t encourage people to just “suck it up” or hide it to fly.

I think it’s really important that we present the condition as it is, not in a way that turns off flight crew or other passengers, but with compassion and facts. I think it’s really, really important that we continue to share our stories and testimonials. I’m hoping what comes out of the survey—and I’m working on this now with lead author Chris Warren and Linda Herbert—is an actionable tip list for physicians, based on the data that patients need to do to fly safely, which is many of the factors I just discussed. Nobody should be humiliated for having a food allergy. Nobody should be mocked by crew. The survey showed that 70 percent of people were promised accommodations they never got. The inconsistency is what’s fueling the anxiety. It’s not anxiety causing the flying experience to be so negative; it’s the inconsistency and uncertainty that’s driving that. That’s very different than being anxious.

Kevin Pho: Lianne, thank you so much for sharing your perspective and insight. Thanks again for coming back on the show.

Lianne Mandelbaum: Thank you. It’s a pleasure to be here.