Patients hide their food allergy, and few doctors speak up [PODCAST]

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On a Hulu comedy, a man hides his shellfish allergy from a coworker. When the reaction starts, he takes Benadryl. Lianne Mandelbaum is a food allergy advocate, president of the No Nut Traveler, and airline correspondent for Allergic Living. This episode is based on her article “Why a Hulu comedy’s food allergy myths are dangerous,” published on KevinMD. You will hear why she says every beat of that plot is a myth, starting with the idea that Benadryl treats anaphylaxis and ending with the show’s diagnosis of adrenaline poisoning. She cites a global survey of 4,704 people in which 31 percent said they hid a food allergy to avoid getting in trouble or being mocked. Lianne then traces what that silence costs, including a college student who treated himself, told no one, drove to the hospital alone, and died in the parking lot. She also explains what changed in the latest airline rulemaking, and what she is asking clinicians to do about it.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome back Lianne Mandelbaum, food allergy advocate and president of the No Nut Traveler. Today’s KevinMD article is “Why a Hulu comedy’s food allergy myths are dangerous.” Lianne, welcome back to the show.

Lianne Mandelbaum: Thank you. Glad to be here.

Kevin Pho: So tell us about this latest article on KevinMD and why you decided to share it with us.

Lianne Mandelbaum: This article takes on every food allergy misconception in a show that I was alerted to by a friend of mine who has a child, a teenager, with food allergies. It really packs everything I’ve been saying over the last ten years into one punch: Food allergy is treated as a joke by mainstream media. Other serious, life-threatening conditions might be part of satire, and although I’d argue a lot of them have been sort of eked out, they still retain their seriousness inside that satire. Food allergy, on the other hand, becomes the joke itself.

This piece really struck me because it was about young working people. The show was Not Suitable for Work, on Hulu. Basically, a co-worker invites one of her co-workers, who is male, to dinner, and she says jokingly, “You don’t have any food allergies, do you? Because I hate when men have food allergies.” And instead of saying, “Yes, I have a life-threatening shellfish allergy,” he decides to hide it completely.

On its face, that’s funny, right? He’s embarrassed. Maybe. But the problem is that in real life, people are ashamed, and they do hide it. I see it. That’s the first misconception that I think it’s really important for people in the medical community and beyond to understand: People are bullied, and they’re embarrassed. I’ve spent nearly a decade watching where the jokes land in real life, because people leave the theater with the misconception even more ingrained in their heads that food allergy is exaggerated, that food allergy is a preference or an inconvenience. They don’t leave with the impression that it can kill somebody.

So he then goes to this co-worker’s house for dinner, where she serves him his allergen. The first thing he does is take a shot of Benadryl when she leaves the room. So here we have misconception number two, and we have been fighting this misconception within the food allergy community for a long time. Benadryl does not treat anaphylaxis. It does not treat cardiac collapse. It does not treat airway swelling. One physician told me that Benadryl is what you give if you want to stop someone from itching while they’re dying, and I’ve never forgotten that. So you don’t itch to death. That’s what you take it for. So that is a big misconception.

And then he goes back to accept more of the food, and more of the food, and has these reactions, downing more and more Benadryl. Here we have another misconception. In real life, a shrimp allergy or a shellfish allergy is really, really dangerous. It’s one of the more dangerous ones. I think about a young boy in Brooklyn, whom I wrote about in the piece, who passed away after inhaling the vapors from the shellfish his grandmother was cooking. He had a concurrent case of asthma as well, so that makes it more likely. But there are a lot of people who react to the vapors of shellfish.

I know people who won’t travel on commercial airlines, grown women. The person I’m thinking of is actually a nurse who runs Pen Nursing, and she is terrified to get on a plane because she has passed out in Whole Foods when she didn’t know that they were doing a sampling and cooking of shellfish. No plane will tell her if that is on the menu, nor will they suspend serving it. So this is something that real people deal with every day, in a myriad of different situations, not just in the air.

So there’s that misconception that you can just keep eating, treating, eating, treating, eating, treating. It would be really nice, actually, if life were that easy, because then we wouldn’t see fatalities from anaphylaxis.

And then there is what might be one of the worst misconceptions that this solidifies. I know it’s a comedy, but the problem, again, is that food allergy is the joke. It’s not part of the joke, and it doesn’t retain its seriousness. It is the joke itself. They take him to the hospital because he collapses, and he’s been using his auto-injector over and over again as the evening progresses, and they diagnose him with adrenaline poisoning. So what you’re left with is that it’s not the shellfish that almost killed him. It’s the epinephrine.

We already face hesitation, if you’re with someone, a stranger, to use a needle, if that’s what you’re carrying. Now we have the nasal formulation, but we know from medical studies that hesitation leads to more fatal outcomes, as opposed to treating right away. When you treat right away, you get a better outcome, and oftentimes you don’t need to have that second dose if you treat quickly.

So there are so many things to unpack here. You can choose any of them. But the article weaves in real-life experiences, like a college student in Michigan who had a reaction to a chocolate chip cookie. If I remember the story correctly, it was baked on a cookie sheet that a peanut butter cookie had been baked on, so it was cross-contamination. He knew he was having a reaction, and he gave himself epinephrine, and he didn’t tell anyone. He left, drove himself to the ER, and died in the ER parking lot when the reaction came back. His mom has spoken out about how he was bullied as a child for his allergies.

So there is a price to staying silent. We don’t know what was going through his head, but you’ve got to imagine he didn’t want to be different. He was a college student. He thought he could handle it. He didn’t let anyone know. He didn’t want to call 911, which would of course have been a better move than driving alone to a hospital. But that is the price of shame and silence. I think it’s time to recognize it for what it is, to talk to people about it, and to not stay silent.

Kevin Pho: So the first thing I want to unpack is that shame, and shows like these that pretty much have whole episodes based around the shame of admitting that you have a food allergy. What is it specifically about food allergies that these writers constantly pick at? You’ve been on the show multiple times about various shows that choose food allergies. Why food allergies, or allergies in general, versus other conditions? Why do they keep going back to that to be mined for, quote unquote, easy laughs?

Lianne Mandelbaum: Well, you and I are talking about this, but not a lot of people talk about this. Not the people who treat people with food allergies. Some of them do, but rarely, over the years. Even when I send our articles to physicians in the field, they don’t necessarily share them. In fact, I’ve been quite disappointed over the years when they’re not shared, because we need support from the people who treat the condition. We also need those people to say, “There is a third rail for our community, and this is it, and you can’t cross it.” Maybe there’s nothing we can do about it, and it’s ingrained into people’s heads because of all these years of comedy that it’s funny. But say something, because the only way to counter bad information is with good information, right? With education and awareness.

I think people are so afraid of being the buzzkill, or the person who’s anti-comedy, or of hearing, “You know what, just learn to laugh.” I could learn to laugh if I hadn’t met so many parents who have buried their children. I think I could learn to laugh then. This is not something to laugh about. You wouldn’t laugh about someone dying from any other life-threatening disease, and you shouldn’t laugh about food allergies.

One of the things that the study I worked on with Northwestern showed: We surveyed 4,704 people, so it was a large global study, and it showed that 31 percent of people hid their food allergy because they didn’t want to get in trouble, or get thrown off, or get mocked. This is real life, where you’ve potentially got a young adult or an adult. I don’t worry so much about the children, although I do have a child’s story that I can share with you. I worry more about the young adult and the adult, because shame doesn’t go away because you get older. I think it gets worse, because you’re not with your mom. They’re not advocating for you. You’re not a cute little kid, and even then they dismiss you.

Then you get on a plane. I’ll give you a perfect example. I just took a testimonial on my website from a businessman who accepted the first-class meal on American Airlines. It was a slider with hummus, the carrot hummus. Would you think there are nuts in there? They grind cashews into it. It’s not on the menu. It doesn’t have to be on the menu. It’s not illegal to not tell people. It’s not illegal to have an incomplete label. That’s from the FDA; that’s not from me.

So why didn’t he say, “Does this contain it?” He was just making an assumption that because of what this food was, it wouldn’t have his allergen, which was cashew, so he didn’t say anything. Well, there’s a cost to that. He had a reaction. He is lucky. He felt a tingle on his tongue from a little taste, and he was OK. But the next person was a five-year-old, whose story I got two weeks ago, who went into full anaphylaxis from an airline meal. This time, the mom did ask, and it did contain the cashew, as we know, and she needed an EpiPen. So there’s a cost.

Also, some of the symptoms of anaphylaxis can mirror someone who’s drunk on the plane or who has passed out. If you’re too ashamed to tell someone, then you’ve also not shown them where your safe medication is. And the airlines are not required to carry easy-to-use auto-injectors or nasal sprays. We just had the FAA reauthorization issue its rulemaking, and what they’re doing is taking away a prescriptive list. So even though the working group that put together recommendations says there should be easy-to-use epinephrine, the prescriptive list is gone, and they’re giving airlines flexibility. They think that’s how they’re modernizing the kits, which on its face sounds great, except for the fact that they’ve had the flexibility all along and have not put these medicines on. Now we won’t even have a list to see if it’s missing. They’ve also taken away the exemptions you had to file if you were flying without epinephrine. So we don’t even know if it’s missing, who’s replacing it, or whether there’s a shortage. There’s no paper trail. And again, it’s just a disease that’s not taken as seriously as it should be.

I actually had a meeting with the FAA where I brought up a recent death on Qatar Airways of a sixteen-year-old who took a sandwich and died. It had his allergen. The medical equipment on the plane did not work. Again, there are consequences to not taking this disease seriously. That means stocking the right medications on planes, not as an afterthought, not as an option, not as something that’s not on the list, but as something that’s as important as the defibrillator.

People eat on planes. Not all food allergy patients watch the show. Not all food allergy patients have a discussion with their physician about how the meals aren’t safe because they don’t have to be labeled completely. So it is reasonable to foresee that people will potentially have anaphylaxis on a plane, just as it’s reasonable to foresee that they’ll need the defibrillator. And I’m kind of sick of being thrown to the bottom all the time. I don’t understand it. I don’t understand why people in the medical community haven’t been up in arms about this for years. Sorry, go on.

Kevin Pho: Obviously, you’ve been on the frontier of advocating, and you’ve been on the show multiple times, and yet you still feel that people like the FAA, and these shows that keep coming out, are not taking these food allergy stories, these food allergy-related deaths, seriously enough. From talking to other advocates, what do you think it will take to really get their attention? Obviously, the reason they’re not taking it seriously is probably money, right? It’s expensive to make these adjustments. But what do you think it will take to get the attention of the entertainment industry, and the attention of the FAA, to take it more seriously, if deaths themselves don’t do it?

Lianne Mandelbaum: I just want to mention that there was a study in 2019 from Shaker and Greenhawt that looked at the cost of adding auto-injectors on planes, and it was, I think, 8 cents per at-risk passenger. We can share that. But they spend money on so many other things. I think this is a blip for them. They could probably make it up on luggage fees. It’s just absurd. They just don’t want to do it. There’s institutional inertia. I don’t even know when this modernization will take effect.

Are we going to have another person die on a plane in a well-publicized case? I’m not sure what it will take. Maybe a few deaths. The reason we have good airline policies in the U.K. is a very well-publicized death. I’m not sure why this death didn’t get more attention, but as it moves through the courts, I really hope they don’t settle, and not just selfishly, so we get details on what went wrong and how we can do better.

I just think people have to recognize that their patients are going through these untenable situations and maybe hiding their food allergy, and maybe just have a discussion about it. And also, just realize you’re not the buzzkill. You don’t have to go after the comedy. You don’t have to bash the comedian. You could just say, “Well, this is why this is not great for people with food allergies.” Again, that’s just putting forward a different opinion, not banning anybody from writing something that’s inappropriate, even though it wouldn’t make it up there. I really don’t think it would make it off the drawing board. But I think if enough people start to object to this kind of humor, one day it just won’t be acceptable, just as there are certain words that we don’t use anymore that used to be part of our humor in society and have gone away.

Again, I’m not advocating a ban, and I’m not advocating punishing people who do this, but trying to explain why it’s not OK for our community is, I think, a really important step. I don’t think we’ve gotten there yet. I’m hoping that if we do this enough, we chip away each time. I’m not completely pessimistic. I feel that each time we write about this, each time we tell people about this, there’s someone we’re reaching, and eventually that will reach a critical mass, right? It’ll be like water on rock. It starts out as a drop, but every time we do this, the drop gets stronger, and eventually the rock will wear away. I just don’t want it to be at the price of somebody’s life, which is why I keep getting on my soapbox.

Kevin Pho: Now, let me ask a question from the perspective of the family. Let’s say a young adult or a teenager is watching this Hulu show. Of course, they see that episode, they see the shame of the person hiding their food allergy, and they get the subconscious implication that they themselves should do it. As an advocate, how do you advise these families to navigate the bullying, the peer pressure, the wanting to conform, and the hiding of their food allergies? How do you advise these teenagers and young adults to navigate all those social issues and the stigma associated with their food allergy?

Lianne Mandelbaum: I think a lot of good is coming within the food allergy community from the recognition of the mental health component of food allergy, and I think there are a lot of good professionals out there. Some of them have websites. I actually just went to an event by the Food Allergy Fund that had a great speaker, and the Food Allergy Fund now has a toolkit on its website on how to deal with different situations, modeling behavior, and I think shame is one of the things they talk about. Find something like that, an online resource that would help you, because every parent thinks they’re equipped to handle it. Everyone thinks that they can handle it, but I think it’s about recognizing that sometimes you can’t, and that you need a little bit of help from a professional.

There are a lot of resources out there. A lot of the advocacy groups that address food allergy have them on their websites. I’m trying to remember the name of the person who spoke at the Food Allergy Fund event. They were so good, and they modeled different situations on how to deal with things like bullying. It was really a perspective I hadn’t thought about, and I really wish I had had such a resource when my son was younger. So there are a lot of people out there doing really good things about the mental health component, and I’d say seek them out.

Kevin Pho: We’re talking to Lianne Mandelbaum. She is a food allergy advocate. Today’s KevinMD article is “Why a Hulu comedy’s food allergy myths are dangerous.” Lianne, as always, let’s end with your take-home messages to the KevinMD audience.

Lianne Mandelbaum: Support people with food allergies. It’s not just an inconvenience. It’s potentially life-threatening. Realize that it’s not just children who get bullied. We tend to think of children being bullied, but earlier in my advocacy journey, I wrote about an adult who had peanut butter put all over his workplace, and he had been intubated the last time he had been exposed to his allergen. I just read about another case that was very similar. So realize that this happens to your adult patients. You may not think to ask them about it.

Tell people to use what’s afforded to them, the preboarding. I’ve had people who are ashamed to, because they’re 6-foot-3 and they look, well, we’ve talked about this before: college players who want to preboard because they’re flying American Airlines and they’re allergic to tree nuts. American Airlines will not stop serving the tree nuts. They will serve them all around you regardless of your allergy. So he just wanted to get on early to clean, because the person before him had definitely been eating his allergen. And they laughed at him and said, “You don’t look like you need to preboard.”

So realize that you don’t see a food allergy until it’s a problem and a person is in trouble. Try not to judge a book by its cover. Try to be kind. Try to support patients with food allergies if you treat them, and speak up when you see something that’s inappropriate, so that it’s not just the patient yelling into the void. There are ways to support people. Also, I refer people to mental health professionals, not because they have a problem, but because modeling the behavior, speaking to someone, and even joining groups of other people like you could really help you get through some untenable situations without finding yourself ashamed and hiding things.

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

Lianne Mandelbaum: One more thing. If you’re a medical professional, please write to the FAA. There are comments on the docket; say that you’d like to see a requirement for easy-to-use epinephrine on planes. I would ask you to do that not just because it’ll be good for the community that I advocate for, but because you could be called on during a flight emergency, and the right equipment may not be there for you to save someone. What a horrible situation you would be in then.

Kevin Pho: Thanks again for coming back on the show.

Lianne Mandelbaum: Thank you.

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