Ep. 238: The Latest in Food Allergies and Airlines

Food allergy and airline advocate, speaker, and change maker, Lianne Mandelbaum, Founder of No Nut Traveler, updates us on the latest food allergy and airline news. Lianne will discuss how you can share your airline travel challenges and successes while helping the food allergy community.

 Resources to keep you in the know:

• No Nut Traveler
• Share Your Story
• File a Complaint
• Grassroots Army

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Transcript

Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions,

each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone, I'm Caroline Mossessi and I am your host for the FAACT Roundtable podcast.

I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog. And I am FACT's Vice President of Community Relations.

Before we start today's podcast, I just want to say thank you to Ars Pharma for their kind sponsorship of FAACT's Roundtable podcast.

Food allergy and airline advocate, speaker and change maker Lianne Mandelbaum, who is the founder of no Nut Traveler, joins us today and updates us on the latest food allergy and airline news.

Lianne will discuss how you can share your airline travel challenges and successes while helping the food allergy community.

Lianne, welcome back to FAACT's Roundtable podcast. I have been waiting for this podcast because it's been a while since we've talked and there's been a lot of movement with activities and you are the airline guru.

So welcome back.

Lianne: Thank you so much for having me. I'm thrilled.

Caroline: I am too.

I know you really well, but some of our new listeners don't know you, so let's get to know you better.

So can you share your food allergy and airline story? Because there was a significant event that started all of this good work.

Lianne: There was, there was.

And basically my son at the time was allergic to peanuts, tree nuts, eggs.

Luckily he has outgrown eggs and all tree nuts, but he remains allergic to, to peanuts and one antibiotic.

And we were sitting in the airport lounge in Denver waiting to get on our flight to Newark, back home to New Jersey, and the woman behind us heard me tell Josh, who was 8,

that he couldn't go with his brother and sister who were going to Rocky Mountain Fudge because they were handing out free samples of peanut butter fudge that day. And she turned around, she said, excuse me, does your son have a peanut allergy?

And I said, he does. He has a life threatening peanut allergy. And she said, well, we're all going to eat peanuts here,

so I think you should move.

And I actually appreciated the heads up. It's the departure lounge.

The pain in the butt is that we were traveling with Another family. And everybody had gone to get snacks except me, because I had my own safe food for Josh.

So I was, like, wheeling.

It took me a couple trips to, like, wheel us to a different spot.

And her three children are eyeing us as we're doing that. And as soon as we got settled in the new spot, they followed us, and they started throwing peanuts up in the air on purpose, missing them in their mouths, crushing them underfoot when they missed them,

and then pushing the dust towards Josh and laughing. And at this point, I'd ascertain they were going to be on our flight.

And in the departure lounge, you have an exit, but when you're up 30,000ft in the sky, you don't have an exit. And, you know, I had scenarios actually going through my head of, like, these children going to the bathroom and throwing, you know, sprinkling some peanut dust on us,

because they clearly didn't see the gravitas of the situation, and neither did the parent who was in charge of them.

So I got on a customer service line, and at the end,

they said to me, this is not a customer service issue.

So then I went through the chain of managers at United, because that was the airline we were flying. And the last manager looked at me and looked at Josh, and he said, well, if you think he's going to die, just don't get on the plane.

At which point, Josh, who was never frightened of his allergy, became very scared.

He said, I'm only eight. Please don't put me on the plane. I've got my whole life ahead of me. I don't want to die. And so we didn't get on that plane.

But when we did get home, I did a quick Google search, and I found out that this was the least egregious story and that families were being threatened, they were being kicked off planes,

spoken to poorly. And I.

It kind of just lit a spark under me, like this.

This can't happen.

Even at 8,

Josh had a passion for tennis. And now at 19, he plays Division 1 tennis at Rice University in Texas. And,

you know, he had these dreams, and I'm thinking, how's he gonna get to tournaments? Like, Even at age 8, this is his passion. Like,

something like the fact that an airline wouldn't even tell people around him to be careful, which is actually the only thing I asked,

how can that derail his efforts? Like, I just won't accept that. And so I started out small. I started out like one mom for my child, but really,

it's morphed into Children and adults living not just with peanut allergies, but any food allergy, because no snack should be more important than a person's. Well, being up in the air is not about dining.

It's about getting to your destination safely.

And I think that food allergies need to be respected as the legitimate disease that they are.

So that, that's a little bit of the backstory.

Caroline: And it's an amazing story and you just tell it so well. And every time I hear it, it's like I've never heard it before because I think back to when you started.

And so on that note. Exactly. Since you've launched, what are the changes that you've seen? I mean, you are a powerhouse. I am a little biased.

But seriously, you have made so much change. So can you talk about what's changed since that day that you experienced in the airport to today?

Lianne: Well,

well, one of the. One of the emotions I felt when this happened to us is being alone and not having a place insofar as not necessarily for the food allergy support, but for this particular mode of travel.

Actually, on the plane, on the way home, I sketched out a website idea because I wanted to collect these stories,

not just of me, but of the other situations that I saw taking place with my quick Google search.

And so we did become a home to collect these testimonials.

And one of those testimonials,

I collaborated with Mary Vargas, disability rights attorney, and we actually brought a case to the Department of Transportation where American Airlines was specifically denying people with food allergies the right to pre board an airline.

They actually had it in writing for peanut allergy. But the beauty of this case is that it wasn't just a peanut allergy. It was someone that had multiple food allergies.

And DOT came back and they ruled that food allergy is a disability under the Air Carrier Access act, which had never been written down formally before, and that we were entitled to the right to pre board.

And that changed everything.

That just changed the landscape. And it took a lot of patience.

Again, finding the right case, finding the right person to partner with,

and collecting all these different experiences from different people globally.

And so that was a stepping stone for us because it was reported in the New York Times and it was reported in Allergic Living and you know, and then Skift picked up a piece about it and, you know, the Wall Street Journal has written about it.

And so it put us on the map,

whereas we were really relegated to not being on paper at all or on screen. You know, I'm still old school. I like my newspaper. That has changed tremendously. The other thing that's changed, and this has taken over a decade.

And you know, one of the things, you know, as an advocate and someone who has worked within the legislative area is that change moves at a glacial pace in this arena.

And I'll never forget there was somebody who runs an organization called Open Doors and they were responsible for, and they still are responsible for a lot of the disability rights that people traveling receive on airlines, like specifically with wheelchairs or people who have hearing issues,

people who are blind.

They have fought for and continue to train airlines on these kind of issues. And I remember Eric had said to me about my desire to get at least the right medications on planes.

So that first of all, that educates the crew. Because if you have a crew that's not educated, two things can happen. They either won't let you take any precautions because they think food allergies are a joke and that could lead to an untenable situation, or they kick you off the plane because they think you're too much of a liability.

So the education piece is completely missing insofar as food allergies in the air.

And so my thought was, well,

this is a no brainer. These medical kits haven't been updated since 2004. And yes, you heard me correctly, 2004. The FAA has not issued a circular on the contents of these kits.

So I thought like, okay, this will take six months, right? Like this is just an oversight. But no, he rightly said to me on that day, it'll take you about 10 years.

And I mean, literally it just got into FAA reauthorization a little after 10 years, like I said, a decade. So we still have a shot clock. They have two years from where it's in reauthorization to make it a reality.

The language is such that we hope that's how it's interpreted, but we don't know that that is how it will be interpreted.

And as you know,

when you're doing a bill or you're doing reauthorization or anything legislative area, you don't always get everything you want.

You, you often compromise and then you go from there and you build from there.

And so that's sort of where we are now. We're sort of in this like hovering pattern. But in the meantime, the fact that it got mentioned in FAA reauthorization, the fact that legislators are aware of it and supportive of it again elevates the condition from one that's often invisible to one that has become more visible.

So I think that we've seen a lot of positive change. I think that you've seen a lot of, you know, physicians, when they're notified that these medications aren't on planes,

have begun to speak out to say that they need to be on planes. So I think that our movement,

and it's not just my movement,

if people don't share their stories with me, there's no movement. Right. I can't just share my own stories.

My son is 19. He's going off to college. He's thriving.

You know, it's a community effort of sharing these stories no matter where we live in the world. And, yes, it's a global issue. And so that's one of the other changes I can really talk about from a positive sense is that together with cifar, and you and I are both co authors on this particular study that had Ruchi Gupta and Chris Warren and Anna Nowak and Hugh Sampson and Scott Shisher and Linda Herbert,

sort of royalty of food allergy and brilliant, compassionate,

smart people,

knowing that the data had yet to catch up with the patient's lived experience.

And so we did an airline food allergy travel survey. And we took our time. It took us years again, to marinate the right kinds of questions and the right timing to do it.

We did get some very interesting data. And where I see progress is,

yes, it got written about insofar as the airline part of it, the travel part of it. But recently, Fortune magazine did an article about the jokes that people often make about food allergies.

And there was a recent Saturday Night Live skit that made fun of peanuts on planes. And,

you know, while some people may tell me I'm being oversensitive,

what we have found, because this is an invisible disease,

is that the jokes don't promote conversation.

They actually promote more jokes.

And you and I have talked about this a lot. And the difference in Saturday Night Live skit like this one, which actually didn't just made fun of peanut allergies, it made fun of the person for being too sensitive.

A whole, whole list of characteristics. But the other things that that person was being made fun of has those kind of things are spoken about in public and in forums.

And food allergies just don't get that. They just get more jokes, more puns, more punchlines. And so I was not only gratified that Fortune took on this issue and wrote about the fact that it's not funny when your throat closes, it's not funny when you have to administer epinephrine it's not funny to bring up a medication like Benadryl curing a food allergy when people have used that and had fatalities.

They actually brought up the airline study which said 31% of people hide their food allergy because they're afraid of repercussions from the crew. And so here again,

we have actual data. We're not just turning to anecdotes or one offs. There were 5,000, 704, I believe,

people in the study,

almost 6,000.

And that's a pretty robust population to survey. And we got some really meaningful numbers. And for them to put it out there in the mainstream as an example of what these jokes can lead to in real life, I think means we're making real progress.

I took a really long time to say that,

so please forgive me. If you're listening to it, you're like, it's never going to get to the point.

So the point is, we championed this data. This data matters. This data is the first step,

just like the DOT ruling was another first step.

And FAA reauthorization about the auto injector is another step. So they're all steps in making flipping the switch and making this disease visible and garnering the respect that it needs.

I think we've come a long way. There's so much more to do, and if you actually, like, looked at the whole deck of cards, you might just fall over.

But if you look at where we started,

I think that we've come a really long way. And just like I said, we want change to be tomorrow.

And it seems like it should be because it's so simple. But change takes time.

Caroline: And you really have been that cog in the machine that's gotten all of us involved. Organizations, individuals,

other groups outside of the food allergy world, you know, in the disability world and everything's so interconnected. And, you know, especially what amazes me is the way you work with the media and reporters and getting these news stories out there.

So it is such a big, complex machine making these changes.

But you've done such a stellar job. Which brings me to if you can spend a moment or two talking about just no Nut Traveler, like what that website and how people can work with it and how people can use it.

Lianne: Sure. I mean, no Nut Traveler now is a official nonprofit for advocacy.

One day I hope to expand past airlines, but obviously there's still so much to do.

And, you know, you. You are one of my three mighty board members. So we're small, but we're mighty. But we also are cognizant that we need to put all our efforts where we can do the most good.

I launched recently a grassroots army so people can go find the grassroots army link on our website.

And it's a global grassroots army so you don't have to be in the United States.

And for example, there is a bill coming up in California for food allergy labeling. Well, you know, I can go to our grassroots and see who in California signed up and specifically target those folks.

If there is a survey about patients life and it's global, which there are very many of them now,

I can send it out to my global network. And yes, I want you to share your testimonials with me because testimonials is how this all started. Testimonials are the change.

Testimonials are what matters to me. It's, it's, the data is wonderful and the data is a backup, but it's the stories. It's that when you're trying to get the media or you're trying to get legislators to do something,

it's the people that matter, not the numbers. The numbers help,

but you need people as well.

And so I would say please share your stories with me. Share them with your medical professionals because they're so short of a time period within a medical visit that if you don't mention it, they may not know you've ever had trouble with traveling.

They may have some tips. They may be able to write you a letter to make confrontation less likely. This is my patient. They're traveling with their safe medications and foods.

They have a life threatening allergy. They're prepared.

There's actually on my website a suggested letter that you could show your physician and have them write something similar.

So you could get that on my website.

You can look at the testimonials of other people and you know, I don't rank airlines because what I have found over a decade in this business, if you could call it a business or this space because I'm clearly I'm not a business,

is that the only thing predictable about airline travel for food allergies is the unpredictability.

And so I could tell you that JetBlue is our favorite airline. We have never had a problem with JetBlue. They have always respected my son's allergy. And yet I can pull up some testimonials on my website that are just horrific from JetBlue.

Now there are low. Now most people actually do have positive experiences.

But I'm not going to rank an airline. I'm not going to tell you to like write me in stories. And I'm going to rank because it is essentially an n equals 1 every time you fly.

You could even fly the same airline. On the way there, have a great experience which is something that's happened to me. And on the way back file a complaint with the Department of Transportation because it's really dependent on the crew and if they're following a policy and the captain actually has the authority to throw you off if they want to,

there's very little you can do about it.

I would never want you to look at my website and see a ranking, but I do want you to get an idea and you can see patterns.

So I think it's really important to use that insofar as no, not traveler. Hopefully soon for allergic living where I'm the airlines correspondent, we'll have an airline chart coming out telling you the different policies and other information like emergency medication.

But again, it's not going to be a ranking because I don't feel that we have federal or global policies that reflect that airlines have to follow any sort of standardized protocol.

In fact, our research definitely shows that the airlines aren't collecting these incidences and so there's no onus on them to do anything at all.

Caroline: So thank you for updating us on your website and this movement and what people can expect there.

And so now is there any other latest news in food allergy and air travel? I think you did a great job in just really catching us up on the last several years.

But is there anything that's pressing right now that maybe listeners can get involved with and engaged with?

Lianne: I would still encourage you to share your testimonials and file complaints with the dot.

The complaint system is back up and running. It was down for a little bit sit on a DOT committee and we are having a meeting in July at some point maybe for our next podcast.

I'll have a little more information on that. But that's a disability wide meeting. Not specific to food allergies at all. But obviously there are things you can do to fly safer.

You can research yourself. I can't tell you how many people that become shocked when they travel. American Airlines and American Airlines wants to serve tree nuts all around them.

And American Airlines will not suspend any snack no matter what it is.

If you have an allergy,

the only thing they will let you do is pre board.

So if you know that and you choose them, you have the power because knowledge is power and I don't think that's okay. And I don't think that's acceptable. But there's only so many fires that we can put out.

And the reason I don't think it's okay or acceptable is because I feel that people often can't afford to fly the airline that has the best policy. That's not always the case,

but it shouldn't be that way. It shouldn't be that I'm okay because I can afford British Airways and somebody else can only fly American going to the same destination insofar as a true disability, a disease that can take your breath away.

So I find it wholly unacceptable and I think everyone should find it unacceptable for there not to be standard policies because it shouldn't be what you can do financially to be able to get respect for this disease.

And you should be able to disclose no matter who you are. We have a DOT pending case over two years now with no response where an adult woman who traveled for business disclosed her tree nut allergy to United.

Did not ask them to suspend, just disclosed and showed where her auto injector was because they were going to be serving her allergen. And just in case she was exposed.

Exposed. She knows they don't carry the right medications and they kicked her off for disclosing. And like I said, once the captain kicks you off, you can't fight it when you're on the plane.

I mean, they will come and handcuff you and take you off the plane. So we should all,

whether it's the advocacy groups, the physicians that treat us, anybody listening to this podcast,

anybody who respects other human beings should say that's not okay to reveal something that could be potentially a downfall in the air. So you want to show where your safe medication is.

You're not asking for any concessions, not even to tell people around you. And you get thrown off for disclosing. So that's why it's really important that every story matters. It's so easy to land.

And I've done this myself before. I founded no, not Traveler. Right. I had a bad experience when Josh was two. I just for. I just was so happy when we landed that I didn't file a complaint.

I didn't do anything about it. So I'm not judging people for doing that, but I am imploring people to do differently,

share the stories.

Caroline: That is incredible advice. And so we're actually out of our time with each other. I know. It went way, way too fast. So is there any last thing you would like the listeners to hear from you?

Lianne: Everybody listening, just by listening to this podcast, you,

you yourself are an advocate, just like me, just like Carolyn, just like Eleanor, who runs Fact.

Everybody listening. Just by the fact that you're taking the time to listen, you're an advocate. So whether it's airlines, the schools,

your restaurants,

when people ask for help, meaning if I send you a Survey,

take the 15 minutes to do it.

And if people host conferences, attend,

if people post helpful tips for you, like it,

share it,

speak about it.

We are a very powerful community. But we come become more powerful when we support and lift each other up.

And that's what we are, that's what we need.

We need to lift each other up and validate each other's experiences.

And from that will come the real power of our community.

Caroline: Those are just strong and powerful and perfect words to end by. Obviously I'm biased, but just beautiful. And thank you, Leanne, so much for your time. You are so busy and so we appreciate you spending time with us and hopefully when we get together again, you'll have more news to report and more things that have happened.

So thank you so much.

Lianne: Thank you for having me. It's always a pleasure.

Caroline: Before we say goodbye today, I just want to say thank you one more time to Ars Pharma for their kind sponsorship of FAACT's Roundtable Podcast.

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