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Leading food allergy advocate Lianne Mandelbaum discusses her article, “What one diagnosis can change: the movement to make dining safer.” She explains how for millions of people living with food allergies, dining out is often an exercise in survival rather than a joy, filled with anxiety about cross-contact and lack of ingredient transparency. Lianne highlights a powerful advocacy movement, driven by the personal stories of those with lived experience, that is creating systemic change. She focuses on California’s ADDE Act (SB 68), a bill that would require restaurants to list the top nine allergens on their menus, framing it not as a burden but as a significant business opportunity. By increasing transparency, restaurants can win the trust and business of the food-allergic community and the large groups of friends and family who dine with them. Drawing parallels between her own advocacy for airline safety and this new legislative effort, she illustrates how parent-driven passion is reshaping public policy to make the world safer and more inclusive for everyone.

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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 is a food allergy advocate. Today’s KevinMD article is “What one diagnosis can change the movement to make dining safer.” Lianne, welcome back to the show.

Lianne Mandelbaum: Thank you so much for having me again.

Kevin Pho: All right, so tell us what this latest KevinMD article is about.

Lianne Mandelbaum: On its face, the title suggests it’s about dining, but really it’s about patients that have a diagnosis, find out the world is not built for either them or their child, and use advocacy to make a difference as the people living the disease. I believe from my own personal experience, and from this pediatric nurse practitioner mom who’s fighting in California for fair labeling and dining, we are best suited to help push this through because we know the barriers. We live the barriers. We see the barriers, and I think our voices should be listened to. And that’s the gist.

Kevin Pho: All right, so you are, of course, a leading food allergy safety advocate. How does one become an advocate? You hear so many stories. How does one become inspired? Tell us what happened to their children. What are some of the stories that you hear that push that parent or loved one into that advocacy role?

Lianne Mandelbaum: Unfortunately, the most powerful advocates I have met are ones that have lost someone to food allergy. I think of my dear friend and colleague Thomas Silvera, who lost his son Elijah when he was three because somebody gave him something that contained dairy that was his allergen, and a host of other steps followed from that where they didn’t follow his plan. And sadly, Elijah perished, and Thomas is literally leading a federal effort to make sure in daycares everywhere in the United States that this doesn’t happen to another child. So he’s one of the most powerful advocates I’ve met, and sadly, I’ve met so many more like him. And it shouldn’t be that way because we look at these deaths as not inevitable but preventable.

So I think that’s how the medical community, the greater public community—that’s what we need to… how can we stop another death? How do we get in front of another funeral? It’s usually something negative that happens that propels somebody into change. Right. So I had a negative airline experience, and just to give you an idea of how hard it is to get attention, I was trying to get attention after it first happened, and I was speaking to someone at one of the major networks, and they point-blank said to me, “It would’ve been a great story if he died, but he survived.” That’s just not OK. One of the reasons I started writing is because a lot of people don’t write about stories unless they’re sensationalized and will get clickbait, but that doesn’t help the patients that are living with this here and now. And death should not be the only marker that people should be outraged at. So, myself, Robin, who I write about in this piece, who’s advocating for safer dining in California, we want to make the world better and safer for our children and for adults living with food allergies.

Kevin Pho: And tell us the importance and power of community because as individuals, I think there are only limited things that they can do, but you obviously lead a powerful community. So tell us the importance of community in terms of sharing stories and making a difference when it comes to advocacy.

Lianne Mandelbaum: I think it makes such a difference because even though the number 33 million, which I actually think is way understated for the amount of Americans that live with food allergies, is not a big number when you look at the huge swaths of the population with other conditions, per se. So it’s even more important when the numbers aren’t huge to band together. For example, Robin has been working on this dining bill, and myself and Thomas, who I was mentioning before, and a bunch of other advocates, have been helping her because even though dining’s not our expertise, we want to help her get to the finish line in whatever way we can.

Community is really, really, really important, and sharing the stories is even more important because I think oftentimes medical professionals—we’ve talked about this on so many podcasts before this—there’s limited time in appointments, and you don’t necessarily get to these everyday disturbances that happen in travel and dining. You’re more concerned with getting your epinephrine, getting instructions on allergic reactions, medications—there’s just only so much time that someone has in an appointment, so it’s really important to share these stories so people become aware of them.

I actually sit on a Department of Transportation disability committee. This is really prescient because this took place yesterday. We had this meeting, and we have complaints in front of this board, in front of the DOT, because you can’t sue an airline in the United States, which is something most physicians and most people in the general public don’t think of. And so the only avenue you have for redress is not for confrontation but a Department of Transportation complaint. Myself and disability rights attorney Mary Vargas have had some outstanding complaints since 2022. I asked the question yesterday… one of them was just horrific. An adult businesswoman was thrown off a plane for disclosing her food allergy and telling the crew where her epinephrine was. She didn’t ask for nuts to be suspended—they were going to be served around her—and didn’t ask for an announcement. She just disclosed, and the pilot kicked her off, which is egregious. Basically, one of the people on the committee who’s in charge was like, “Well, basically if you tell a pilot that your condition is so severe, we’re going to side with them potentially when you get thrown off.” And I’m like, OK, I understand that. Which is why I write, why I come on shows like yours. I even reference that, and I tell people: Speak to your doctor. I say, “Carry a note.” I say, “Watch your language.” But these cases are not that. The ones I’m talking about are clean cases, and you still haven’t responded to them. And I felt like the person’s response was someone who worked for an airline, which is so disheartening. So, yes, we have to keep sharing the stories in different avenues. We can’t necessarily rely on government to do the right thing just because it’s the right thing.

And I got the sense, because this was a general disability meeting, that people just don’t consider food allergies a real disability. We see this time and time again with the jokes in the general public. And I think that sometimes even physicians are reluctant to call food allergy a disability because they just are. And “disability” is sometimes a dirty word, but it’s not a dirty word when it’s giving you a 504 accommodation in school and it’s going to make sure that your milk isn’t substituted with milk that’s going to kill your child. These things only happen with a 504 plan. A 504 plan only happens if you’re designated a disability. So we as a community have to get over “disability” as a dirty word. I think getting the stories out there of what’s happening… disability doesn’t mean you can’t do something. Disability means you can do something; you just need the right accommodations. Sometimes people are so afraid to ask for those accommodations with the guise of disability. So I see cracks in the airline system, a system that’s not built for food allergy to be a disability, and I am the squeaky wheel there. There is no doubt.

I feel like Robin, who I wrote about in this article, she’s the squeaky wheel for restaurant safety right now in California. Nowhere in the United States are there really great laws like there are in Europe and other places in the world where you sit down and you get a menu and it just lists the allergens. It’s so simple, and yet people are fighting against it. People are fighting against autoinjectors in planes and letting people pre-board with a food allergy. So I see so many parallels that she and I just refuse to accept this.

And the other person I talk about in this piece, which I encourage everyone listening to read, is Alexa Jordan. So Alexa Jordan now works for the Allergy and Asthma Foundation of America, running a lot of their advocacy. She and I became acquainted when she was a student at Harvard and she went into anaphylaxis on a plane, and they left her in a bathroom, using her EpiPen, lying on the floor. She became instrumental in the fight by getting her senator, Senator Duckworth, who ultimately got FAA reauthorization with the emergency medical kits through. Now to see her, the person with the disease, advocating on a national level not just for herself but for millions of people like her, is just so awe-inspiring.

And I feel like, to the physician community, your patients are the way. They’re living the life. If you take the time to listen to them, their experience will dictate what needs to be done if we listen, if we listen to their struggles, if we ask the right questions. This is the way. This is the way forward. And I’m just here to remind people of that. I’m just really inspired by people in the community that are working together to do this. It’s not always a cohesive community, but we’re working on that because a rising tide floats all ships, right? Or boats, whatever the expression is. So it’s so important to recognize that.

Kevin Pho: Now, you mentioned this act in California a few times. For those who aren’t familiar with it, tell us what it’s about.

Lianne Mandelbaum: It’s about labeling the top nine allergens and training staff on that. It’s so simple. It’s just so simple. It’s really not much more than that. Of course, there are specifics to the law that are still being hammered out in so far as penalties and size of businesses and digital versus written on the menus and all those. But excitingly, it passed the Senate Health Committee, and now it just passed the house. I was listening to the testimony for the house, and this 9-year-old gets up and says, “I just don’t want to be poisoned when I go out to eat.” And not only did she speak, but all her classmates—those with food allergies and those without food allergies—and then the California Medical Association all came up one by one.

The interesting part is many of them came up and said, “I run this or this, or I’m a medical professional. Oh, and my daughter has food allergies, or my cousin has food allergies, or my son has food allergies, or I have a life-threatening shellfish allergy.” And even the bill’s organizers didn’t know; even some of the people sitting on the panel that ultimately passed this got up and said that they had food allergies, which no one actually knew about.

I think it’s so important not only for the food allergy community but for the friends, family, physicians, and medical associations. In fact, this bill is now going to go to the governor’s desk, and what they are asking is that people flood Governor Gavin Newsom’s email with support for the bill. And that’s not just people in California. If you’re part of a medical association… so actually, I would really encourage you. The website I think is AddieTellsAll.com, and I could give you the link, and maybe we could put it with the podcast when it’s shared because it would be really helpful to get people in the medical field to support this bill.

Addie’s mom is a pediatric nurse practitioner, and she has used all… I see so many parallels between her and me. We just don’t take no for an answer. We just keep calling people. We just go, go, go. And no just means, OK, next, on to the next thing. There’s just only an end goal. So some people may see us as a little aggressive, but that’s how it gets done. That’s how change happens.

Kevin Pho: So one of the things that you wrote about regarding this specific act was reframing it, right? Reframing it as a business opportunity. So tell us about how advocates have to change perspective in order to influence and sway minds.

Lianne Mandelbaum: I think a lot of times we focus on the negative, and it’s really easy to do that. There are deaths, there are tragedies, there are people thrown off planes, for example. There are people who have severe reactions in restaurants. But if we flip the narrative and we look at the data, oftentimes it’s the person with the food allergy that determines where you’re going to dine or what airline you’re going to fly. Right? And so it could be 20 people in your immediate family. You could be going on a trip, you could be going out for a special occasion. It could be a sports team that’s going out to dine or travel. And often the person with the food allergy has what we call the silent veto vote. So if it’s not safe for them, maybe you’ll make another choice. Maybe it’ll be a little more expensive, maybe it’ll be the same price, but you’re still going to choose where the food allergy is respected.

In so far as dining and even flying, actually, now that I’m thinking about it, sometimes those people are not dining at all. So the economic potential of having fair policies, having transparency, having safety not be left up to chance but be required, whether it’s on the ground or in the air, could make the choice of an entire family, instead of having this special meal at home, to go out to their local restaurant because there’s a menu that has all the allergens listed. It doesn’t take away the fact that you still have to have the conversation with the human being that is there because obviously there is human error. Mistakes happen, changes of ingredients happen, menus change. So a lot of times, whether it’s the California Restaurant Association or the airline industry, when they say they don’t want to make an announcement on a plane, they feel like they’re giving us a false sense of security. There’s no false sense of security with a food allergy. You still have to have that conversation. Even if someone does make an announcement, you have to clean your seat and your seat area. It’s just the way of the world. We’re just asking for some risk mitigation strategies, whether again, on the ground or in the air. So I think that if we flip the narrative and we say, “Look, there are going to be more people dining in your restaurant,” if I look at your restaurant and someone else’s restaurant and you have clear labeling, I’m going to bring my whole family, or I’m not going to eat at home. And that’s a huge potential profit margin.

Kevin Pho: Now, one of the other things that you talk about in your piece was the concept of shared responsibility, encouraging friends, family, and colleagues of food-allergic individuals to be better allies. So how does one go about doing that?

Lianne Mandelbaum: I found that out many years ago when I had a bad airline experience—it wasn’t bad enough to prompt me to form what I did—where a flight attendant said to me, “Well, good luck.” I had Josh, and I had been upgraded, and she said, “Well, good luck. We served peanuts on the last flight. There’s crumbs everywhere, and I’m serving them to everyone around you anyway.” And everyone in that first-class cabin stood up and said, “We don’t want the nuts. Please don’t serve the nuts.” If every person could be like that…

Yet there was just a video that went viral on TikTok of someone asking for an announcement. He got it from the crew, but the reaction from social media and some of the passengers was like, “I want my peanuts with my gin and tonic.” Like, that’s so selfish. “I’m cracking open my M&Ms. This is what I bought for the flight. The person can go sit in the toilet for the flight.” Cruelty is a choice, but so is kindness. So is empathy, so is compassion, so is standing up for someone. So if you hear that announcement on a plane, stick up for that person. Say you don’t want the nuts around them, even if the airline’s not complying.

If you’re out at a restaurant and someone’s getting a hard time from a server and they’re your friend or your colleague or your kid’s friend, and they’re not being transparent about ingredients, just say it’s not a joke. This is life and death. This is not something that’s optional. It’s not a choice. I think a lot of people think food allergies are a choice, and if you don’t know that much about food allergies, ask your friend or colleague or the person that you’re with. I’m sure they will be able to enlighten you, give you facts. You might be surprised that you don’t understand it’s not a runny nose, which I’ve had so many people in the airline industry come up to me and say that they didn’t realize until they heard me speak that this is something that could actually lead to a fatality. Again, we don’t want fatalities. I would just say support your patients. Support your colleagues. Support your friends.

Oftentimes the kids in school are more empathetic than the parents. They don’t want to bring in a sandwich that’s going to hurt their friend, but the parent is like, “This is my child’s right to eat.” That happens a lot. And if your children think it’s funny to throw peanuts at someone—it has happened to us, it has happened to someone I know in Texas where a football player’s locker was covered in peanuts, and he had hives and he had to transfer out. The school rewarded this child; they didn’t punish him, and he still got recruited. We still have a long way to go in changing again that food allergy is not the Rodney Dangerfield of diseases. It’s real. It can kill people. It has killed people.

Sadly, a few weeks ago—and now that we’re talking about labeling, but it’s not a restaurant—there was a young man who graduated college, so made it through four years of college in Rhode Island, and by mistake ate a candy bar that said “may contain,” not listed in the ingredients. It just had a “may contain” warning, and he died, and he had three EpiPens used. It’s tragic, and that is because labeling in the United States is so mishmash. It’s just so discombobulated that half the time when you see a “may contain,” you think, is it a cover-your-butt situation, or does it actually may contain? And you have no way of knowing. And then most people don’t even know that that warning is entirely voluntary. So we need to fight for transparency everywhere. And to tell you the truth, all consumers deserve to know what’s in their food so they know what they’re feeding their friends and family. But for people with food allergies, they need to make sure there’s not a repetitious ingredient in there that a friend or well-intentioned family member feeds their child and it could kill them. So it’s a little even more important, but I do believe that it’s so simple as to just let us know what’s in the food. Let us know what’s in the restaurant dish. If you don’t know what’s in the dish, there’s a problem anyway. Personally, I like to know what’s in my food.

Kevin Pho: We’re talking to Lianne Mandelbaum. She’s a food allergy safety advocate. Today’s KevinMD article is “What one diagnosis can change the movement to make dining safer.” Lianne, as always, let’s end with some take-home messages you want to leave with the KevinMD audience.

Lianne Mandelbaum: I think I want people to turn on their listening skills. Listen to people who either live with this disease or have a loved one with this disease because they’re the ones that are living in a world that was not set up for them, just like you would with any other disability. And yes, I’m going to call it a disability, not because I want to label anyone as disabled, but because I want people with food allergies to thrive and live a full and happy life just by having some simple accommodations made. Support them on that. It’s not a big ask.

Listen to your patients. Perhaps ask some different questions. Write Governor Newsom about this bill because what happens in California hopefully will spread to every other state. And wouldn’t that be wonderful? Not just for people with food allergies but people with intolerances, people with other conditions to know what’s in the food. That’s just the first step. We’re still so far behind Europe, but let’s get on the ground here and let’s support everybody and make the world safer for people who have to navigate one meal away from a hospital visit or, God forbid, worse. There are ways, and again, a rising tide floats all ships, so let’s help each other.

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 so much for having me. It’s a pleasure.