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Patient advocate Lianne Mandelbaum discusses her article, “What Avarie’s death in Rome teaches us about the gaps in food allergy education.” Lianne reflects on the tragic death of Avarie, a young American student with a known tree nut allergy who died in Rome due to anaphylaxis, contrasting this loss with the promising advancements in food allergy research and treatment. She meticulously outlines the systemic failures in Avarie’s case: despite informing the restaurant of her allergy, she was served pesto containing cashew; her first epinephrine autoinjector reportedly failed; and the responding ambulance lacked the appropriate medication. Lianne underscores how lived experience with anaphylaxis shapes risk perception and highlights the urgent need for comprehensive, lifelong food allergy education starting from a young age. This education must cover crucial skills such as safe food ordering, self-advocacy in various settings including when studying abroad, and clear emergency response protocols. She points to a pervasive societal underestimation of food allergies and calls for widespread education at all levels—for patients, families, schools, universities, the hospitality industry, physicians across specialties to ensure timely allergist referrals, and particularly for first responders to be properly equipped and trained. Lianne advocates for making the knowledge and use of epinephrine as normalized and accessible as CPR, urging the community to translate knowledge into action to prevent further avoidable deaths.

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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 patient advocate. Today’s KevinMD article is “What Avarie’s death in Rome teaches us about the gaps in food allergy education.” Lianne, welcome back to the show.

Lianne Mandelbaum: Thank you so much for having me.

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

Lianne Mandelbaum: Unfortunately, it is about a food allergy tragedy. It is about a U.S. student studying abroad in Italy who went to a restaurant and ordered avocado toast and communicated that she had a tree nut allergy. And yet somehow the avocado toast came with a pesto that contained ground cashews and she ingested them and unfortunately, she did not make it.

We go through a variety of the details within the article and where we can learn from and hopefully prevent more deaths and really where the gaps are in food allergy education, both from the physician standpoint and the patient standpoint. And, unfortunately, as I have written about many times, food allergies are an invisible disease that sometimes we need a little cooperation from the people around us, i.e., restaurant owners, friends to back us up or use our epinephrine. We need some sort of cooperation from those around us in order to stay safe. And so, I think I am going to highlight the gaps in all three of those categories. That is really my goal here today.

Kevin Pho: All right. So before we talk about the gaps, tell us more about the story itself. So it sounds like we had this student order this avocado toast and sounds like she did the right thing. She informed the staff that she had this allergy. And yet she was still given this pesto with cashews in them. So tell us a little bit more in terms of what happened next? Did she have an EpiPen? What happened next, just immediately after the exposure?

Lianne Mandelbaum: Originally when I wrote the story, it was reported that she did not, that she had collapsed trying to go home to her apartment to get her steroid pills. And that seemed to be the focus. But then her parents and the friends that were with her ended up speaking out and saying, no. She had three autoinjectors with her. But the first step was her Benadryl and her inhaler, which we need to get rid of that. When you know you are having anaphylaxis, and it is clear that she knew, we need to educate patients about using epinephrine first and using it fast.

There is this stigma that still surrounds epinephrine, whether it is because of the needle and now we have other choices. We have nasal spray—neither here nor there for this story—but we need to get rid of the stigma. Just like you could do CPR pretty much on anyone and it is seen pretty seamlessly throughout society, using an autoinjector or the nasal spray needs to become part of the public health consciousness and the consciousness, quite frankly, of restaurants.

So then she did use—I am not sure of the time, it has not come out yet—how long she realized when the inhaler and the Benadryl were not working. So then she did go to her three autoinjectors, which she was carrying with her, and apparently the reports from the friends say that the first one failed. I am not sure if that was a failure in how they used it, a failure in the medication getting delivered, but then she did get two subsequent epinephrine doses. She still did not get better. They called EMS. EMS came, but they did not have epinephrine on them. So what they stabilized her, tried to stabilize her with, was not epinephrine. So you can see where all the failures are within that story.

And you know, the thing is no one should die of a food allergy, not a child. Not a student studying abroad, not someone going out to dinner for their birthday. These are preventable deaths and these are all titles we have seen recently in the news, and they create powerful advocates. I have met far too many parents who have lobbied for change on the backs of their loss, and it just should not be. These are preventable deaths. We have the tools. We need to teach everybody how to use them, and we need to raise the way that people think about food allergies. And you and I have talked about this so many times: it is not a diet, it is not a fad, it is a disease. It merits respect.

And I think part of the problem is—and this goes to, and I am not speaking to Avarie’s case because I cannot, I do not have these details—but I do know that teens and young adults do not want to be perceived as different. Research bears that out. And so when there are jokes made constantly in the mainstream media, in movies, on social media about those snowflakes with food allergies, I think that it fosters silence where you need to teach a young person and an adult, quite frankly, to speak up. So, we need to not foster silence. We need to foster advocacy. We need to empower people. We need to have, again, physicians, the general public, the people that have the disease themselves say there is a third rail, these jokes are not funny, and they lead to people being afraid to speak up. So that is part of it, that is part of the education that is needed.

And I came across a tweet the other day. I actually pulled it up because I wanted to read it because I see it every year at this time, and it says: “Six years ago, my best friend died on her 21st birthday. As I do every year, I will encourage you to hug someone you love a little tighter for me today because we went out to dinner and she did not come home because of a food allergy. Food allergies are scary. Take them seriously.” I think that is, in a nutshell, what we need. We need people to take them seriously.

And one of the things I wrote about in this article is I had just come back from a brilliant conference put on by Jim Bakker at the University of Michigan Food Allergy Center, and it was all this hope for food allergy treatments: The fact that we have two new FDA treatments, and there are monoclonal cocktails in clinical trials, and AVAC has a vaccine coming up that attacks T cells. There is so much hope. And then I read about this death. And we need to be taking more action because those treatments are far down the path.

And so, one of the conversations I had at that conference was with Dr. Scott Sicherer of Mount Sinai in New York, and he and I were talking about sometimes he is seeing patients come in right before they go to college, and the last time he saw them, they were three years old. And so they have not learned the skills when they go out into the world to learn how to read a restaurant menu, to decipher labels, perhaps to even think about the fact that that was a vegan restaurant with the avocado toast, and to know that vegan restaurants often these days are using ground nuts to make up for not using cheese. That is also education. Knowing that you are going in to double-check because knowing that you are going into that restaurant, which may very well have an elevated risk, so communication skills are so important.

And then we were talking about how so many patients actually do not get referred by their primary care physician to an allergist. And the primary care physician, who is overwhelmed with everything about this person’s health and has very little time, does not necessarily have these conversations. And it made me think about with my son, we have been practicing. Now he is in college, but we have been practicing for years, letting him order, letting him make the mistakes. And I will sit there and let him order. And he has not mentioned the peanut allergy. This was a few years ago. “Isn’t there something else you want to say?” “Oh yeah, I have a peanut allergy.” It is even a kid with the best intentions and who has been ingrained—I cannot tell you how many times I had to prompt him; now it is ingrained into his head, but it took multiple instances of me interrupting, or hinting, or telling the server myself, quite frankly. So these are life skills. These are not reading menu skills.

So I think that is something physicians can do differently. Perhaps if they can refer to a specialist that hopefully will help patients build skills over time: risk assessment, restaurant advocacy. And I think I would also talk to any physician treating anyone with a food allergy to ask this question in your head: Would my patient know what to do if they were traveling abroad? So, I think these are conversations that are very quick and that could make a very big difference.

Kevin Pho: So, specific to Avarie’s story, and I know unfortunately you hear many, many cases of tragic outcomes like that. Tell me some of the common threads that you see in these stories. Getting back to Avarie’s story, just a foreign student just ordering a simple avocado toast at a restaurant. What can we learn or what can other students listening to you hear? What can they learn from this?

Lianne Mandelbaum: I think they need to learn survival skills. And survival skills when you have a food allergy are very different than just going and worrying about food poisoning in another country or not liking the food. I think you need to speak up. You need to, especially if there is a language gap. There are many websites that have language cards where, for example, I remember that we went to Israel and I had cards printed in Hebrew about Josh’s food allergy, his peanut allergy, so that in case they did not understand what I was saying, or sometimes there is a language barrier and someone nods “yes” but they do not actually understand everything you have said. So to take that out, it could be very, very helpful to have these language translation cards that say, “I have a life-threatening allergy to peanuts. I cannot have anything that has come in contact with peanuts.” Or you could talk about cross-contamination, whatever conversation you would want to have with the chef.

And I would say that if you are going into a place that actually serves your allergen—and of course there are many people who are allergic to multiple foods, so realistically it might be a place that serves their allergen—talk to the chef. Do not talk to the front of the house. At a minimum, send your chef card back there and get confirmation that the chef has read it and understands the severity. Because maybe it will make a difference, especially if there is a language barrier, because that person may have thought they understood what you said, or they may not be educated in what a food allergy is. And again, we have talked about that: It is not a runny nose.

So I think that is one of the most important things, using your epinephrine first and fast, knowing that there is no downside. People seem to think: needle, heart issues. These are the common fallacies that you hear people talk about. No downside. No downside. There is a downside if you do not use it quick enough, and we know from medical research that the quicker you get it in, the more positive the outcome is. Even people who do not succumb to anaphylaxis, if they have waited and used their epinephrine, they are more likely to need a second shot in the emergency room than people who have given it right away. Which is why sometimes food allergy patients face skepticism when they show up in the ER because they look totally normal after using it if they used it very quickly. And they are like, “Wait, why are you here?”

So, I think that is the most important thing. Carry your epinephrine. Do not be scared to use it. No downside. Use language cards. This young woman did have supportive friends. She did communicate this to the restaurant according to the police report. I am not sure where the breakdown was, but in Europe they do a full investigation, so we will find out. It is just that we do not know the specific details now.

Kevin Pho: So I know by sharing Avarie’s story and coming on this podcast and writing about it, you are trying to transform this tragedy into something more positive and to a constructive teaching moment. So what has the response been to this story just from publicizing in the news and from your world in food allergy, what has the response been?

Lianne Mandelbaum: The world, I mean, the world in food allergy of course is heartbreak. As we have always written about, we feel every anaphylaxis tragedy personally because humans are imperfect and we all make mistakes. So once again, we are left with: There are people who are upset that her first device did not work, but the lesson there is always carry more than one device. Right. For the most part, she had a lot of ground cashews in what she ate, and cashews are a very potent allergy.

Even in the recent trials of Xolair that is now approved—it is a shot that blocks IgE and is a treatment now approved by the FDA for food allergies—when the lead physician in the study was presenting it at the research symposium where its approval was announced, the doctor who was presenting it said that cashew was one of the hardest allergies to treat. So she got a lot of dose. So I would say do not panic. For the most part, your epinephrine does work, especially if you use it quickly.

And of course, sometimes you see the comments like, “Well, what is she doing going into a vegan restaurant? This is her fault. Why was she eating out if she had an allergy?” So you still get those societal, blaming-the-victim comments. And so we still do have a lot to do in so far as, again, educating the greater public. I feel like these same people are the ones that say, “Do not fly. Just do not get on the plane.”

And I think we also really see the need for transparent labeling in restaurants in the U.S. We do not have any requirements. For example, there is a bill that a nine-year-old is championing in California called the ADDIE Act. And Addie’s mom is a pediatric nurse practitioner, and they are trying to get menus just to list the top allergen, and it is absurd that we do not have this yet. So, I think all consumers deserve to know what is in their food, especially at a restaurant, especially up in the air, and that we are not there yet. So, I feel like everybody should hopefully be supporting these efforts.

Labeling in the U.S. There was a mom just reported that died from a cookie. She went to Safeway. This happened a month ago, just came up on my radar. She went to Safeway and got her favorite oatmeal raisin cookie. She was 60 years old, so I guess a grandmother, maybe not even a mom. But she went and took a bite of the cookie, and they had put peanut butter cookies in there instead of oatmeal. It did not say if she used epinephrine, but she did pass away, sadly. And then again, people are saying, “Well, how stupid do you have to be to not recognize an oatmeal cookie?” Well, you pick up a box, you see the label. She took one bite. It is not like she ate the whole cookie and did not taste the peanut all along. As soon as she took the bite, she knew something was wrong. So stop blaming the victim.

Let’s advocate for better labeling in the U.S., both on packaged foods and in restaurants. And I think we need to have stringent regulations; in Europe, there are fines. There are really no repercussions that we hear of for U.S. food manufacturers. So, I think creating some sort of accountability, but also knowing that because there are these lapses in the U.S. system, it is even more urgent to carry your autoinjector or nasal spray everywhere and even more urgent to use it first—the first line of treatment—if you know you are having an allergic reaction. Again, no downside. We really need to remove the stigma. We have to—I do not know, I could shout it from the top of a building—but we need help in removing the stigma.

Kevin Pho: We are talking about Lianne Mandelbaum. She is a patient advocate. Today’s KevinMD article is “What Avarie’s death in Rome teaches us about the gaps in food allergy education.” Lianne, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Lianne Mandelbaum: OK. Avarie did everything right on paper, right? So, her death underscores the fact that—I am trying to put this in words—it is a systematic failure that happened. It is a public health failure. It is not just a personal one.

If you are a physician and you can refer to an allergist—because it is really important that this is a continuum when you see your patient of education, not just a one-off—because that is not going to necessarily imprint the lessons that could one day save this person’s life.

I think we have to normalize training in anaphylaxis, just like it is normalized to do CPR training. In fact, I would love to see it within CPR training. I think we need to normalize having them in EMS kits on planes. I think they need to be in concert venues. One day, it would be great to have them in all restaurants so that if somebody for some reason leaves their life-saving medicine behind, there is backup.

I think if you are a physician, again, ask the question: Is my patient prepared for college? Are they prepared for traveling abroad? Is there more of a conversation? Is there a question I need to ask to tease out? Many teens just go out into the world; they are unarmed with these life-saving skills, and that is what they are. They are life-saving skills, survival skills. As we put it before, we have to teach advocacy.

It is not just teaching how to read a label. You need to—public speaking is really hard. It is really hard for adults. So imagine you have to now teach a teen who does not want to be different to speak up after dinner with all their friends, right?

I think about, there was a death in Pennsylvania. I do not remember all the details, but I do remember this person went to a Chinese restaurant. They had always eaten Chinese food before. They did not see peanuts listed because, again, restaurants in the U.S. do not have to declare. And they died from an egg roll because what I learned—and I did not even know this—is that to seal the egg roll paper, a lot of people use peanut butter paste. So, you cannot be silent. There is a cost to the silence. And so encouraging people, grooming people to be able to speak well in public—not creating anxiety, but creating a necessary amount of small fear that you do need to advocate for yourself because this pesto could have cashews in it. This… we need to—it is not creating anxiety; it is creating survival.

And I think we need to flip that because a lot of people say, “I do not want to make my child anxious.” I know so many people whose kids they think have mild allergies, and “Oh, it is not like your child.” And there is no mild allergy. And most of the deaths that have happened, people have had mild reactions in the past. So we have also got to get past that myth that every food allergy reaction is an n equals one. You do not—if there is enough of the allergen, if there are co-factors like taking a Tylenol or going to the gym—we have to realize that past reactions do not predict the severity of future ones, which may become fatal. So again, survival skills. Survival skills.

And then the most important thing is we have to include first responders, schools, universities, and hospitality in this education loop. We have to find a way to get the seriousness of the disease within that group. And first responders should be carrying epinephrine. We should be fighting for that in everyday life, everywhere. But that is why, again, speaking on this platform, I am just hoping that people hear this, who need to hear this before we have tragedies and no more funerals.

But hopefully, things we have been chipping away at, and I think people are more open to the idea of a food allergy being serious. And it does not hurt that the adult-onset crisis is skyrocketing with no real answers as to why it is here. So, if people are not doing this for their loved one, it could be your loved one one day. So I think that we all win when we look out for one another.

I would leave people with that. And you never know if you are going to be one of the people that has this adult onset, if it is going to be your spouse, your child, your loved one. Be kind to people who have food allergies. They are not trying to be difficult. They really are not. They are trying to survive. And I think that that is the key word of this podcast. We need to teach people how to survive in a world that is often not equipped to protect them, and we have to keep pushing for a world where safety is the standard, not a matter of luck. There is absolutely no reason for some of these mistakes to have occurred, and that is because we are not pushing safety as a standard and it is luck. And when your luck runs out, your luck runs out. And that is not how a good system should work.

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

Lianne Mandelbaum: Thank you so much for giving the patient a voice.