Educating the World about the Deadly Danger of Food Allergies

Interview with Food Allergy Research & Education CEO John Lehr

Potentially deadly food allergies affect one in 13 children in the United States, or roughly two in every classroom. Food Allergy Research & Education (FARE) is a nonprofit organization that works on behalf of the 15 million Americans with food allergies, including those at the risk of life-threatening anaphylaxis (an extreme and often life-threatening allergic reaction to an antigen). Tokyo Journal International Editor Anthony Al-Jamie met with FARE CEO John Lehr.

TJ: Do you know what causes food allergies?
LEHR: Food allergies have been around for a long time. What’s unusual is the dramatic increase in industrialized or developed countries, as well as the increase in developing countries. In the United States, there are eight major food allergens [milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat and soybeans], but in countries like Japan, there is a specific food, soba noodles, that is more common as a food allergen than is common here, and in Israel, sesame is a very common allergy. If you ask the leading scientists at the National Institutes of Health in the United States what is causing the dramatic increase in food allergies, there are a lot of theories but no definitive answer. There are, I think, many implications. There is certainly a genetic component to it and there is an environmental component to it. In terms of research that we’re helping to support, we’re looking at a lot of twin studies, but there is a hygiene hypothesis, a vitamin-D hypothesis, cesarean VS natural birth....

TJ: What is the hygiene hypothesis?
LEHR: The hygiene hypothesis comes from the fact that we have an increasing usage of antibiotics. That’s one component of it. The other is that we are much cleaner than we once were. We wash our hands more often, so the environmental allergens that we would have gotten exposed to more in the past, we are not getting exposed to as much now. Studies also show that urbanized populations have a much greater likelihood to have food allergens than non-urbanized populations. So in more rural areas, you will see lower instance rates or low prevalence rates for food allergies, which again may argue for a hygiene hypothesis. I think if you talk to scientists, they will say that is one of many factors. I don’t think there is going to be a smoking gun that explains it. I think it is going to be a combination of a lot of different things that have changed over time.

TJ: Can you tell us about FARE?
LEHR: There were two food allergy organizations, one called the Food Allergy & Anaphylaxis Network (FAAN) and the other one called the Food Allergy Initiative (FAI). In the United States, they were the two leading organizations. They had similar but somewhat divergent missions. After a period the boards of both organizations said, “This is a really big problem. It’s better for us to talk with one voice, bring our resources together and then from there grow and become a much larger organization.” I was brought in as the CEO to oversee the merger. We formally merged in 2012. FARE really is a new organization, but FAAN was around for about 21 years and FAI was around for about 15 years.

TJ: What are the greatest challenges you face at FARE?
LEHR: One of the greatest challenges we face with food allergies is the word “allergy.” A lot of people in the general public think a food allergy is like other allergies where the reactions are itchiness, runny eyes, itchy nose, things on the skin, like you get from air allergies – things you can get over. The difference with food allergies is if you ingest something that the body does not recognize as food and it causes an allergic reaction, the food gets in your stomach and gets distributed throughout your blood stream and you have multi systems involved. The most severe consequence of this can be anaphylaxis, which is a rapid onset and potentially life-threatening situation. Again, food allergies have a different kind of allergic response than a lot of other allergic responses because they are life threatening. That, I think, is not necessarily understood by the general public. For the past 20 years, we have been spending a lot of our time and energy trying to demonstrate to the general public how serious food allergies are and there is skepticism out there still from people saying this is not a real issue. But it is a real issue and a real serious issue. This is not a lifestyle choice. It’s a situation parents need to be aware of and take precautions. We look at four different areas. Research, education, advocacy and awareness. There’s really a challenge in each one of those areas. In education, we want to make sure the general public understands food allergies – that it is a serious and potentially life-threatening issue. We also want to make sure we are giving families and educators and other people who interact with food allergies really good solutions and practical tools they can use to live well and engage. In advocacy, we want to make sure there are reasonable and practical policies and laws in place to ensure inclusion and safety for all the people with food allergies. For example, we have been supporting stocking epinephrine in the schools. Epinephrine is relatively easy to administer. It’s safe. So let’s just make sure some people in the schoolsare trained, and that there is a stock amount of epinephrine so that if someone has accidental exposure we don’t lose children in the school. The big area we are really going to focus a lot on is research. There is a lot to be done and we need to understand food allergies better. It goes back to your original question about what is causing it. That’s basic research, so we need to have better basic research. We need to understand it’s impact on families, how it is affecting the children themselves – developmentally, psychosocially, emotionally, how it is affecting siblings, how it is affecting the parents, how it is affecting them economically and how it is affecting society economically. That’s all part of understanding the disease.

TJ: Can you tell us about your anti-bullying campaign?
LEHR: In May, which coincided with Food Allergy Awareness Week, we did an antibullying campaign. In food allergies, one in three children are bullied because of their food allergies. Bullying is not acceptable at any time but when you bully someone because of food allergies like giving someone a cookie that might have nuts or peanut butter in it and saying, “Here, eat this!”, it has very serious consequences. Our food allergy bullying campaign … was also about exclusion because a lot of children with food allergies are excluded. For example, if somebody is having a birthday party and a parent decides to bring in chocolate cupcakes that have peanut butter on top and there are children in the classroom who can’t eat peanut butter or peanuts, then they are excluded. That’s a subtle form of bullying. When we were doing the bullying campaign we were getting all sorts of comments on social media saying, “Yes, my child was bullied. They had peanuts put on their skin…” There are horrific stories out there. That was one of our public awareness campaigns, and it’s being broadcast by CBS television across the country.

TJ: Do you work with restaurants?
LEHR: We’re working with the National Restaurant Association on a restaurant training program. A large percentage of our parents won’t go out to restaurants because they are afraid. They don’t know if the food they are going to be eating is cooked in a way that had cross contact, so we are working with the National Restaurant Association to develop a training program for restaurant staff. The National Restaurant Association represents a huge part of the industry. It has a program called ServSafe, which teaches how to make sure you are preparing food and serving food in a very safe manner. This food allergy component will be in addition to the ServSafe program. It will walk restaurant staff through things like if a food allergy family comes to your restaurant, what are the things you need to be prepared to do? Our public relations campaign also says to our families: If you go to a restaurant here are things you need to do or should do to ensure you have a safe dining experience including asking the restaurant staff, “Can you accommodate me?” What we want to do is increase the opportunities to our families by giving them opportunities for a safe dining experience.

TJ: The problem is that they don’t understand. If you ask restaurant staff, “Do you use peanuts back there?” They’ll say, “No, no, no.” But if you keep asking, you’ll f ind that they use peanut oil to fry everything.
LEHR: That’s why this restaurant training program is important. Take a look at it this way: 15 million Americans have food allergies in the United States. The average American spends in the neighborhood of $2,500-2,700 per year eating out. So if you take that 15 million and multiply it by $2,500, and multiply that by all of the family members who are also affected who may not have food allergies (if you’re a family of four and you are not going out because one child has food allergies), now you’re looking at a huge number of people who aren’t going out to restaurants because of their food allergies, and a huge potential loss of income for restaurants. So by having a training program and increasing awareness about food allergies among restaurant staff and by increasing awareness among families about the things they need to and can do when they go out to restaurants, we’re going to encourage a much safer dining experience.

TJ: Are you trying to eliminate peanuts?
LEHR: Our position is: It’s not the food that is the problem. It’s the reaction to the food. So what we are trying to do is mitigate the reaction to the food, and there are different ways of doing that. There is immunotherapy, where you are desensitized by giving a small portion of the food and increasing amounts over time. That is one of the leading therapies we have right now. The most common type we are looking at is
called oral immunotherapy. We are working on monotherapy, which is providing gradual exposure to a single food at a time like peanut, milk or egg. We are also working on multitherapy where you are allergic to peanut, milk and wheat and we give you peanut, milk and wheat all at once so you don’t have to desensitize one and then another and then another.

TJ: Does desensitization work?
LEHR: We are in the beginning stages. We have not done a definitive Phase 2 or Phase 3 study, but in Phase 1 we’ve had good results. We need to do more research.

TJ: Is it dangerous?
LEHR: It has to be done in a clinical environment. We want this done in Food and Drug Administration (FDA)-sponsored clinical trials. The last thing we want is clinicians out there on their own trying to desensitize patients with food because food to those with an allergy to it is a hazard.

TJ: Are you working with the ballparks?
LEHR: We have relationships with a number of professional sports teams: some hockey teams, some baseball teams. They have a peanut-free section during a game. Not the whole stadium, but a section will be devoted to those families who are allergic to peanuts.

TJ: What percentage of people have food allergies these days?
LEHR: There are 15 million Americans with food allergies. Of that, six million are children, adolescents and young adults. That’s one in 13 children or two in every classroom. About 4% of all Americans and about 6% of children have food allergies. What happens, too, is sometimes people outgrow their food allergies, while other people develop food allergies. For example, allergies to shellfish in adults is increasing.

TJ: What percentage of those could have anaphylaxis?
LEHR: This is the scary thing about food allergies: Anaphylaxis can occur with anyone with food allergies. The thing we tell people is that your previous reaction to a food allergy is no indicator of your next reaction.

TJ: How many people actually die each year?
LEHR: Mortality statistics are hard to determine. Every three minutes someone is taken to an emergency room because of a food-related reaction. So that’s hundreds of thousands of people each year in the United States. When they get to the emergency room, the fatality may not always be linked back to food allergies. I’ll say it’s likely in the hundreds but we don’t know specifically what it is. When you think about it: Every three minutes, someone goes to the emergency room. That is an enormous amount of people who have just eaten something, they’re having a reaction and now they are going to the ER.

TJ: What are the most dangerous types of food? Peanuts? Shellf ish?
LEHR: Peanuts, tree nuts and shellfish. Those are the ones that are going to have the most severe reactions. You normally outgrow milk and egg. Also, if you bake milk and egg, people are sometimes able to tolerate it when they can’t tolerate it in its natural form.

TJ: What are you doing internationally?
LEHR: FARE began the International Food Allergy Alliance, which is made up of other food allergy organizations around the world.

TJ: Do you have a Japanese group?
LEHR: Yes, we do. We hold a conference every fall in the United States where the different groups around the world join. Japan is involved, as is Australia, New Zealand and a number of countries in the European Union and South America. We are trying to share information about the best practices for remaining safe and also to help increase awareness globally.

TJ: You said EpiPens are safe. Is it an issue that people don’t use them fast enough?
LEHR: We say to people you always have to have them. You should have two because sometimes reactions are biphasic. If you are having an allergic reaction and you have any respiratory or cardiac issues, use the epinephrine and use it as soon as possible. It opens up the airways. It allows you to breathe. Epinephrine is just adrenaline which is a natural occurring thing. It is the best way to stop an allergic reaction. It’s much better if you administer it within a few minutes of food allergy exposure.

TJ: Is there anything other than epinephrine?
LEHR: Right now if you are having an anaphylactic reaction, epinephrine is the thing to give. If you’re having mild reactions such as itchiness, people say you can give Benadryl or an antihistamine, but if you think your child is having an anaphylactic reaction, give the epinephrine. Having epinephrine is like drinking lots and lots and lots of cups of coffee and it will wear off relatively soon. With the exception of some adults who have cardiac issues, it is a really safe drug to give, so err on the side of giving.

TJ: Thank you very much for your time! tj

Originally appeared in Tokyo Journal Issue #272. Click here to order from Amazon