Compassionate solutions for food allergies in air travel [PODCAST]

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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.” Lianne, 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 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. And most importantly, insofar as other passengers and airline crew, people are not aware of what a food allergy is, why you can’t answer the question of, “Is this a severe allergy?” Because every reaction is an N equals one to itself, and we wish we could answer it. If only it was that simple, and I could say, “I’m the person who’s not going to react on a plane, and so I don’t need to tell the people around me. I’ll be just fine.”

And finally, it’s about empowering people to take steps to be safer. And it can be done, and so that’s part of my work as well.

Kevin Pho: So, I know that you’ve been working, of course, on food allergies and that connection with airline travel for many, 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 RCI group and Chris Warren of Northwestern, that surveyed almost five thousand people with food allergies. And it’s come up with some really good data that is helpful in educating the public, because it’s been really important that people not think that my work or things that other people are sharing are just anecdotal.

So, now we really have data that, for the first time, I think catches up to the patients’ lived experience. And so then that data gets picked up by more mainstream outlets, and then 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.

Yet, one of the examples I gave in the article, and it’s not the first time I’ve heard it from this airline, but there was something a little different. I’ve had passengers on this particular airline asked to use their autoinjector prophylactically, and it made my head spin at the time. But this particular crew actually asked the mother and the son to stand at the back of the plane for two and a half hours while they served the tree nuts. And that struck me as just such a lack of education, between the fact that the autoinjector is not a prophylactic, not being able to tell the people around you, just not taking the condition as a serious medical condition. So, that exposes that we still have so much more to do, but yet I do see positive change since we last spoke.

For a decade, I have been working with different legislators to get the right medications in the airline emergency medical kits. And in 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. FAA has a two-year shot clock to make those changes, and there are wide-sweeping changes in the emergency medical kit. So, it’s not just the allergic passenger. It’s updating all the medications, because there hasn’t been an update since 2004, which should make everybody’s head spin, that the planes just don’t have to.

You have to have a medical kit that mirrors the conditions in the century you’re living. And that’s not what we have right now. We have voluntary, if they want to upgrade. If they don’t, there’s no guidance. So, this is something that needs to happen. So, I’m cautiously optimistic, or maybe I’m pessimistically optimistic about it. We’ve been down this road before when we think there’s going to be change, but I think there’s a shift.

Kevin Pho: So, other than including things like autoinjectors 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? Maybe there’s been a little more awareness.

Lianne Mandelbaum: I want to step back to the autoinjectors, because the language says the right medication to treat anaphylaxis, and now we have nasal epinephrine. So, there are choices now. So, it could be either. Really, easy-to-use epinephrine where you don’t need a medical professional, meaning the vial and syringe. So, I just wanted to clarify that.

So, that’s also something that’s happened that gives airlines choices, people treating choices. So, I’m hoping, with more choices, more airlines choose to stock. I mean, unbelievably, Delta has revamped their entire emergency medical kit voluntarily, has put Narcan in it, but will not put an autoinjector or the nasal spray. So, we don’t know what we’re going to get until it’s mandated. Really, it needs to be mandated.

I think you get voluntary recognition from airlines, and they have policies, but no, 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 of what passengers are experiencing. So, wherever you are in the world, these are the kind of issues you face on airlines. And this has to change.

I mean, change is slow. It took a decade to get even the wording shifted for FAA reauthorization. So, in my years of advocacy, I’ve honed patience, which is something I probably didn’t go in there with. But I do have hope. Even just being on this podcast and writing articles and exposing the situations, which not everybody is even aware of, I think is positive. I think that there have been articles in the mainstream media about reactions on planes, and I think that that helps, because people don’t understand.

And that’s one of the things I actually really want to get through to your viewers, especially those treating. And it’s not just allergic patients. I would say people with celiac disease, people who have intolerances. Airlines are not subject to the same labeling laws that are on the ground. So, you can take a meal in the air that lists ingredients, as I’ve had several testimonials come up with, and it doesn’t list your allergen, and it can still be in there, and it’s legal.

So, my advice to anyone treating or anyone listening with an intolerance, an allergy, celiac: Please don’t accept the airline meal. It’s risk versus reward. There’s no upside. This is a risk we can completely eliminate. And the physicians of the people that have reacted did not know to warn them not to take it. They don’t know about these labeling loopholes necessarily, so how is the average person going to know?

So, I need to reach people to say, “Please, please tell people not to take the airline meal.” When did you last go on an airline and say, “I can’t wait to fly them again because I can’t wait to have that meal”? I mean, it’s just not worth it. Bring your own food. It’s an easy fix.

Kevin Pho: So, we’re speaking in February of 2025. Just for my viewers to kind of understand what those with food allergies have to go through before they travel, just talk to me about some of the precautions that they have to take today.

Lianne Mandelbaum: First of all, I think you have to talk to your physician before you go away, because everybody is different, and everyone has a different risk. And I think it’s important to have the conversation. And not only that, it’s really important to have a letter to say that, “This is my patient. They need to travel with safe food and medications.”

You don’t want your patient, and sometimes this happens, you don’t want to argue with airline crew. It doesn’t end well these days. They’re under a lot of stress. There’s a lot more besides allergies on their mind. And having a letter that says, “This is my patient. They have this allergy. They need to carry their safe meds.” Because there’s lots of people that I’ve read about and also taken testimonial from that have been thrown off a plane for not having an autoinjector. Have the autoinjector.

And actually, I tell people, “Save the box,” even if you carry it in a carrier. I smush the box down, and I have it in my carry-on luggage, because every once in a while, you could get that TSA agent that says, “Is this yours? Where’s the label?” And so you want to know that.

Know when you go to other countries that, for example, if you’re carrying a liquid antihistamine, it can be taken away if it’s not a certain size. Research the countries where you can’t bring in certain types of food, like fresh fruit from a country that you’re not allowed to bring on the plane. OK, then bring your nonperishables that are sealed as your safe food on a plane.

Always pack double the amount to account for delays. You could be stuck for hours. You could be in an airport that doesn’t have safe food. You could be in an airport in the middle of the night that the food stores are closed, and you’ve got to prepare. You’ve got to have wipes, not hand sanitizer. You have to have wipes with alcohol in it to take the allergen off. So, you need to be able to pre-board the plane. You need to think about just even travel itself, like the hotel, the cities, language cards. There’s a lot to do before you travel.

You should also, if you live in the United States, register for a program called TSA Cares, because then they don’t take the food out and inspect it. Because that’s something I’ve had people have, with dairy allergies or have safe formula, and that has been confiscated by TSA or ruined because they haven’t changed gloves and they’ve handled someone else’s food beforehand.

So, there’s really a lot that you have to think about, more than the average person, when you travel. But if you take all these steps beforehand, you can really ramp down the stress. And the other thing that survey out of Northwestern showed is that 98 percent of people flying with food allergies have anxiety, which is because of the uncertainty. Uncertainty policies are going to be followed, uncertainty of what’s going to go on with food inspection. So, we try to say, “Have a checklist in your head of the things you need to do,” so at least that stuff is out of the way. So, there is a lot.

And of course, always, always carry your autoinjectors or epi nasal spray, because it sounds so simple, but there was a woman who went into anaphylaxis on a plane. Thank God an ER doctor was on there. And she took the wrong purse, so they could use the vial. Because again, airlines at this moment, not only are they not required to stock the easy-to-use autoinjector or nasal spray, the vials that they are required to have are under an exemption under the FAA, which means the plane can take off without them.

And so I have interviewed countless physicians who have opened up. There’s one that comes to mind, Dr. Ana Noak out of NYU. She opened up a kit, and there was literally a sticker that said, “No and kit.” So, 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 where the girl took the airline meal, again, it’s the same one I’m telling you about. She has a tree nut allergy. She took the pasta. It wasn’t listed in the ingredients. She went into anaphylaxis. And where was her autoinjector? Under the plane. So, that’s another reason why the pre-board is so essential, so that you don’t have to gate-check 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.

And you and I have discussed this so many times, where people in the public judge us: “You should have carried it. You shouldn’t have taken the meal. You shouldn’t.” It’s really nice to lob all these accusations, except that we’re all human, and all humans make mistakes. I really want people to have a little more compassion. You can’t be perfect.

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 that you would like to leave with the KevinMD audience.

Lianne Mandelbaum: Please don’t take the airline meal, number one. Just don’t take the airline meal. And educate your patients, no matter what disease they have that they need to watch their diet, not to take the airline meal.

Research your 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 that’s OK, but that airline, they have a policy that says, “We will serve the tree nuts around you.” And if you look on my website, you do a little research, this is something that they do. Know to check codeshares, because you may be flying, for example, British Airways, but they codeshare with American Airlines. And British has a great one. American doesn’t. So, know that.

If someone around you is asking for you not to eat the allergen, please understand it’s not to take away your favorite snack. And one of the other examples I gave in the article is that, on social media, there’ll be people who will eat the allergen, and then they’ll see that a reaction doesn’t happen, so they think it’s fake. No. Allergies are unpredictable. And so, just because you’ve had a previous mild reaction, in fact, most fatal reactions, the people had a previous mild reaction.

So, we wish we could answer you. We’re not hiding that we don’t know if it’s severe or not. That’s not how allergies work. One day, hopefully, there will be a test that says, “You’re going to be the one that’s OK with cross-contact. You’re going to be the one that’s OK, the people around you.”

If someone is pre-boarding a plane, do not look at them with disdain, because they’re getting on to clean, because that’s your biggest route of exposure. It’s your biggest route. 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 this is, again, something that we have control over, and that’s why we pre-board. We don’t pre-board to one-up you. We don’t pre-board to get the luggage space, except for the fact that we need to keep our safe meds and food with us.

So, I take it when I’m not traveling with Josh and we see other people pre-board, the multiple groups before us. I remember I was recently traveling without him, and someone was grumbling about how many boarding groups there were. And I’m like, “I’m just grateful I don’t need it. Let them pre-board.” I’m assuming if someone pre-boards, they have a reason, and I’m not going to judge, because many disabilities are invisible. And be thankful. Be thankful you don’t need it.

There’s no privilege in being on your hands and knees and scooping underneath a 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. That’s not a privilege. You may look at it as a privilege because I’m getting on the plane before you, but it’s not a privilege.

And for physicians, give patients a note. It may seem simple, but it can take away, again, the 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 would like to be able to help passengers.

So, I think educating passengers and flight crew that an autoinjector or nasal spray is not a magic wand, and it can just buy you time. And if a reaction is very severe, it might not be enough. And so, just show compassion. People really think that we’re trying to one-up them. We’re really not trying to one-up them.

And there are people, the survey showed, that are hiding their food allergy, I think it was 31 percent, because they don’t want to get in trouble. And the problem with that, and maybe you think, because I’ve had people, well-intentioned people, say to me, “Just shut your mouth, board the plane, clean your area, and don’t take the food.” That’s really great, except when my son or someone else that has an allergy is inadvertently exposed, and they pass out. What if the flight attendant thinks they’re drunk? What if they’re confused? And they wouldn’t know, because the flight crew doesn’t carry the right medications. They wouldn’t know where that person’s autoinjector or nasal spray is. So, how would they even be able to treat this patient? 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 with facts. These are the facts. And I think it’s really, really important that we continue to do this, share our stories, share our testimonials, and continue.

I’m hoping what comes out of the survey is an actionable tip list. That’s what I’m working on now with lead author Chris Warren and Linda Herbert. We’re working on an actionable tip list for physicians, what we can say based on the data that patients need to do to fly safely, which is many of the factors that you and I just discussed now. So, it’s one and the same.

But nobody should be humiliated for having a food allergy. Nobody should be mocked by crew. Seventy percent of people in the survey were promised accommodations they never got. So, the inconsistency is what’s fueling the anxiety. So, it’s not anxiety that’s causing the flying experience to be so negative. It’s the inconsistency and uncertainty that’s driving that. So, 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.

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