Backlash Boards the Bus: Allergy Protocols Likened to Hysteria

in Features, Managing Allergies, Parenting & School
Published: July 2, 2010

165053369Thinkstock: Brian McEntire
From the Allergic Living archives; this popular article was published in the magazine in 2009.

IT DOES sound, if not “hysterical,” then at least over the top. One single peanut is noticed on the floor of a school bus and the 10-year-old riders are all told to get out immediately, because of food allergy risks.

The anecdote appears in an opinion article, written by Dr. Nicholas Christakis, a professor of medical sociology at Harvard Medical School, and published in December 2008 in the British Medical Journal. Christakis uses the bus incident, which took place at his children’s school in Massachusetts, as a starting point for this thesis: accommodations made for food-allergic students are an unnecessary “charade” based on fears that “represent a gross over-reaction to the magnitude of the threat.”

As an expert on how health conditions affect others in one’s social network, Christakis goes a big step farther, raising the specter that school responses to food allergies bear “the hallmarks of mass psychogenic illness.” In other words, what used to be called “epidemic hysteria”: the eruptions of fear in towns, schools or hospitals based on the threat of contamination involving, the professor says, “otherwise healthy people in a cascade of anxiety.”

His hysteria article quickly grabbed the attention of news outlets around the world. He was interviewed by Time magazine, The New York Times, the Los Angeles Times and Canada’s National Post. Media articles were circulated on websites. The blogosphere had a field day. Suddenly it was fashionable to dismiss food allergy as a made-up phenomenon.

Parents seeking accommodations for kids at school were no longer taking sensible precautions – they were portrayed as hysterical, anxiety-ridden and even needing to “feel special.” Food allergy groups and parents of kids living with the risk of anaphylaxis were put on the defensive, while leading allergists only got to add their brief comments on the media debate as responses to Christakis’s statements.

The fallout from one editorial was remarkable. Yet in writing of needless hysteria, Christakis in fact increased the anxiety within the food allergy community. The widespread attention has had a polarizing effect on those on either side of the school accommodations issue, and now, after many advances have been won to protect students at risk of anaphylaxis, at least one major newspaper is asking: “Can schools bring back the humble peanut?”

Backlash Isn’t New

Backlash, however, is not entirely new. “There have always been people who are doubtful that food allergy even exists,” said Anne Muñoz-Furlong, founder of the Food Allergy and Anaphylaxis Network (FAAN, which is now FARE), the Virginia-based non-profit that focuses on awareness, education and research.

Of course, the condition is real, it can result in severe and even fatal reactions, and it is more common than ever. The Centers for Disease Control and Prevention in October 2008 reported an 18 per cent increase in the number of children with food allergy from 1997 to 2007. Meantime, a study from the Mayo Clinic in December found that anaphylactic reactions to food are responsible for 50,000 emergency visits each year in the United States, up from a previous estimate of 30,000.

With a rise in food allergies, particularly in children, has come a heightened awareness of the need to keep kids with the condition safe when they are away from their parents. School, of course, is where they spend the bulk of their “away” time, and where foods and snacks are part of daily life. This has led to advocacy, followed by measures to reduce the risk of allergic reactions, mandated by law in places such as New York state, New Jersey, and Ontario, Canada.

“There are a lot of schools that are dealing well with these allergies,” says Laurie Harada, executive director of Anaphylaxis Canada. “And they’re not all suffering from hysteria and living in fear. It has become a part of their norm.” Muñoz-Furlong agrees, pointing out that evacuating a bus due to a peanut is a rare and extreme example.

“In the U.S., we have two million school-age children with food allergies. They go to school, they participate in class parties and field trips, they’re on the bus and they are mingling – just like every other child.”

Hysteria Accusations Grow

All the same, the backlash has grown. The current rumblings date back to January 2008, when Harper’s magazine published an article in which writer Meredith Broussard did not mince words. “The rash of fatal food allergies is mostly myth,” she wrote, “a cultural hysteria cooked up with a few ingredients: fearful parents in an age of increased anxiety, sensationalist news coverage and a coterie of well-placed advocates whose dubious science has fed the frenzy.”

She slammed FAAN for its fatality statistics that estimate 150 people a year die from food allergies, but neglected to mention that those figures, which emanated from a Mayo Clinic study in Minnesota, were derived using widely accepted methods.

When Christakis came forward to similarly cast doubt on the wisdom of school accommodations, his words carried considerable weight in the media. He wrote his perceptions on hysteria as a Harvard professor and physician, and did so in the august BMJ. Within the scientific community, however, his views quickly became divisive.

In a letter to the BMJ, Dr. Jonathan Hourihane, a well-regarded Irish pediatric allergist, took issue. Hourihane said, for instance, that the professor had distorted the question of false positive allergy tests. “There is no such thing as ‘meaningless’ allergies to nuts, or else we have to accept the terms ‘meaningless’ asthma and ‘meaningless’ cancer,” he wrote.

Christakis turned down Allergic Living’s repeated interview requests, but several weeks later, Hourihane is still fuming about that BMJ article. In an interview from his office in Cork, he says: “The fact that food allergy doesn’t affect one particular individual doesn’t make it trivial to those who are affected.” He adds: “If [Christakis’s] child had a food allergy, I would imagine he would be down there banging on the door of the school saying, ‘You’ve got to protect my child or I’ll sue ….’”

Hourihane says it’s a question of finding the balance between the cost society is prepared to pay, and the protection of the food allergic. For example, while restricting all food allergens completely is clearly unreasonable, keeping egg out of a particular daycare facility might be prudent, since many infants are allergic to this food.

Allergen Avoidance Distortion

The professor particularly raised the ire of allergy researchers by suggesting that keeping peanuts and other allergens out of schools is doing more harm than good. “The wholesale avoidance of nuts contributes to the problem by resulting in children who, lacking exposure to nuts, are actually sensitized to them,” Christakis writes.

But to back up his statement, he used a study that looked at allergy prevention in infants – and whether a young child who is at risk of food allergy might build tolerance over time through eating rather than avoiding peanuts. The study, which is not considered conclusive, is not relevant to school-age children who already have food allergies, and who are under doctors’ orders to strictly avoid their allergens.

“He really twisted that study to make it seem like it applied to his theme,” says Dr. Robert Wood, chief of pediatric allergy and immunology at Johns Hopkins Children’s Center in Baltimore.

But if allergists and those living with food allergies were dissecting the Christakis article, others outside the affected community found his words rang true. Joel Stein, a high-profile humor columnist for the Los Angeles Times, wrote that Christakis’s column proves what he’s long thought: food allergies are made up by yuppie parents to make themselves feel special.

Broussard, author of the Harper’s article, jumped back into the fray, reprising her views online in The Huffington Post, contending that FAAN has purposely inflated fatality statistics in order to create an allusion of food allergy danger.

By the tail end of January, Christakis’s theory had found a kindred spirit in Dan Gardner, an Ottawa Citizen columnist. In an editorial on food allergy, he suggested that a bully in Washington state who had smeared an allergic teen’s face with peanut butter didn’t deserve a four-day assault conviction – since the judge’s premise that the attack “could have been fatal” was a myth. The focus of his piece? “Why so many parents of children with nut allergies live in a constant state of fear.”

Anaphylaxis Canada’s Harada wrote a persuasive letter to the editor, pointing out that school policies weren’t an over-reaction or hysteria, that bullies using food as a weapon deserved prosecution, that with anaphylaxis even a tiny amount of an ingested allergen can cause a reaction (and yes, sometimes death), and that the number of children at risk of anaphylaxis is increasing.

But amid the growing chorus of doubters, it was hard to get noticed or heard. Parents, especially those who’ve witnessed a child in the throes of a serious reaction, were left to wonder: Why do people love to doubt this disease?

Asking Another Not to Eat

Perhaps doubt and some backlash is inevitable – given that these allergies revolve around food. What sustains us? Food and drink. How can something as nourishing as tree nuts, for instance, so tasty and healthy to a majority of people, set off a cascade of dangerous symptoms of anaphylaxis? Viewed through the eyes of those unfamiliar with food allergy, it does seem hard to fathom that one group can’t eat what’s perfectly safe for the rest.

Harada also notes the social significance of food to humans. “Food is very emotional,” she says. “It comes into play in all aspects of our life: when someone’s born, and when someone has died; when you celebrate, and when you grieve.”

Dr. Mike Pistiner, a pediatric allergist in Leominster, Massachusetts, also thinks the rapid rise in the incidence rates of food allergy accounts for some of the conflict. “It may have turned into an issue faster than everyone else was ready to grow with it,” he says. “There may be people who are still dug into the concept that it doesn’t exist because it was so much less of an issue 20 years ago. But I do contest that if one of these parents’ children had a food allergy, they would very quickly see that it was very much real and it wasn’t in anybody’s head.”

Pistiner would know something about that: his 6-year-old son was diagnosed with a tree nut allergy two years ago and his family’s life quickly changed. “Many social situations focus around food,” he notes. Everything from eating in restaurants, visiting friends and family, birthday parties and play dates now require more questions, conversations, and worry. “What’s hard is when the families of children without food allergies don’t accept that this is life for the families with kids with food allergies.”

The diagnosis of any significant medical condition will alter a person’s life. But what sets food allergy apart is the need for the cooperation of others: whether that’s a separate pan at a restaurant or asking non-allergic children to wash their hands after eating or to avoid certain foods in their lunch bags.

“The one thing with food allergy,” says Pistiner, “is that it involves other people’s children. In some cases, it involves changes in classroom celebrations, and schools having policies of being ‘peanut aware’. Those have an impact on the kids without food allergy.” Harada agrees. She believes a lot of the resistance to accepting food allergies as serious stems from asking someone not to eat something, or not to bring something to school.

Managing food allergies requires participation from the community, which includes people who may not be convinced that changes are necessary. Because of this, the schools that deal with them best have clear, consistent policies in place that have been developed by people on all sides of the issue.

The school bus example given by Christakis “was an unfortunate incident,” says Pistiner, who has trained school nurses on food allergy management in the professor’s home state of Massachusetts, as well as New York and New Jersey. “But that’s not the way most schools are dealing with this.”

Dr. Susan Waserman, an allergist in Hamilton, Canada, is of the view that most parents, children and schools in North America are handling food allergies in a reasonable fashion. “You can always find people who are extremely anxious, who go overboard,” she says. “But by far, the majority of my food-allergic patients cope well and their responses are appropriate.”

Some anxiety does come with the diagnosis – it’s just that most allergy experts do not see the mass hysteria that Christakis identifies. Even if there is trepidation inherent in learning to cope, Muñoz-Furlong reminds us of the basics: “This is a medical condition, diagnosed by a physician. This is not parents deciding one day – ‘I think I’ll say my child is allergic to peanuts.'” She adds, “I think what these reporters are missing is that every one of the parents who has a kid with a food allergy wishes they didn’t.”

Lawnmower Stats and Trivializing

At the heart of the parental worry over food allergies is the fear of death, and the visceral need to protect a child from it. While death is by no means a common occurrence with food allergy, anaphylactic reactions do have the capacity to shut a body down. Allergy experts say fatality statistics are a flawed measure of whether school and other accommodations are needed – but it is those numbers that support the critics’ statements.

Very few people die, they say, so why all the fuss and restrictions? Broussard used the Centers for Disease Control figures of 11 deaths a year in 2005 to swipe at FAAN’s estimate, from the Mayo Clinic research, of 150 deaths. Statistics, of course, depend on the information that’s analyzed.

In a previous BMJ debate, Hourihane and other allergists, along with Muñoz-Furlong, stated that emergency room reporting of fatal food anaphylaxis is not reliable. Attending physicians may never be made aware that a patient’s extreme distress started with food and list the cause of death as another condition, such as cardiac arrest or asthma.

This is especially considered the case with asthma, which can be fatal of itself, or a symptom of anaphylaxis that’s triggered by food. Sometimes the cause won’t be known, but the allergy experts say such a case is often coded as an asthma death – of which there are about 3,900 a year in the United States.

McMaster’s Waserman concurs: “People have reactions all the time that they may not tell anybody about, they go to the emergency and these things are called ‘acute asthma’ or they’re mislabeled as some sort of adverse event.”

But whatever the actual number of deaths from food allergy is, it seems unlikely to be enough for the doubters. “Only 150 people (children and adults) die each year from all food allergies combined,” writes Christakis. “Compare that number with the 50 people who die each year from bee stings, the 100 who die from lightning strikes, and the 45,000 who die in motor vehicle collisions.” Sticking with the 11 deaths figure, Broussard asserts: “More people died from lawnmower accidents.”

Those who have first-hand experience with food allergies remain uncertain why the critics want more people to die before the disease is taken seriously. “When we look at food allergy deaths, these are primarily kids and teenagers,” says Muñoz-Furlong. “We don’t want to be reporting thousands of people are dying each year.”

Pistiner questions how the statistical comparisons argue against precautions for food allergy: “We are taught to do certain things to decrease the chances of being struck by lightning,” he says. “There are speed limits on the road. With food allergies, it’s a similar thing: There are certain ways that we can prevent accidental ingestions and exposures, there are definitive strategies that can be put into place, and there are ways to then be prepared in case an accidental exposure happens,” he says.

Wood agrees: “The [fatality] number is only small, in large part, because people are taking the right precautions, keeping themselves and their children safe.” Food allergy deaths should be largely preventable.

With every fatality she’s had to investigate, Muñoz-Furlong says, “I can tell that if we had done more education for both the patient and the person giving them food, we could have prevented it.” For instance, a review of 31 food allergy deaths in the United States between 2001 and 2006 found that in the majority of the fatalities, the deceased did not receive a timely injection of epinephrine.

Focusing solely on how many have died also doesn’t tell the whole story of what it’s like to live with allergies, or to experience a serious reaction, and why people take the precautions they do. Food allergy reactions are notoriously unpredictable. “If you want to avoid nuts, you’ve got to do that every day, not just on the day that you know it’s going to kill you,” says Hourihane.

While there are few food allergy deaths, the number of serious reactions is on the rise. The CDC recently reported that, between 2004 and 2006, 9,500 children had reactions severe enough to warrant hospital admission. That compares to only 2,600 admissions between 1998 and 2000.

Anaphylactic reactions from which you recover are still serious enough to merit avoidance measures. Have one and you won’t soon forget the traumatic experience – struggling to breathe, feeling as if the throat is closing, lips and eyes ballooning with swelling; itchy body hives, and violent nausea or diarrhea. Allergists warn that sometimes blood pressure will drop sharply, increasing the patient’s chance of a heart attack. No parent would risk putting a child through this if it could be avoided.

As well, notes Hourihane, “the risk of having a reaction when you eat in a restaurant and you don’t know what’s on the menu is quite real, and so families have social limitations put on them.” Measures to protect people with allergies, such as school anaphylaxis policies and packaged goods labeling laws, help to free them from limitations and allow them to live normal lives.

Muñoz-Furlong sees quality of life as a major issue for those living with food allergies, but she says others claim this is needless worry. Her response is this: “Spend a week trying to live as if you have a food allergy and a reaction could land you in the hospital. See how it does get to you – spending hours at the grocery store reading every single ingredient label, or going to a restaurant and trying to see if the wait staff really believes you.” Living with food allergies means constant vigilance.

Concern About Impact on Kids

What irritates Waserman, Muñoz-Furlong, Harada and others, is that articles such as Christakis’s and Broussard’s, and others based upon them, oversimplify a complex subject. Allergists, those with children with food allergies, and those who advocate for them are the first to say more information is needed, rational policies need to be put in place, and compassion needs to be felt on all sides.

What’s disheartening, they say, is that when parents dealing with a food allergy read these stories in the media, it will only make them more nervous and protective of their children. “A lot of families are very upset because they’re concerned that the messaging coming out is confusing to the schools,” says Harada.

Pistiner suggests Christakis was likely well-intentioned, but that his essay backfired. “Pieces like that, especially when they aren’t 100 per cent fact-based, can have the exact opposite impact, and really ignite people.”

While Christakis refused an interview with Allergic Living, he did e-mail that: “Nothing I said suggests that the parents of the kids in the country who actually have anaphylactic nut allergies are making it up.” Although that’s true, he created an image of over-protective parents, school policies based on “hysteria,” and a cycle of creating more allergies by keeping peanuts and nuts out of the classroom.

It is Harada’s hope that this representation won’t harm the efforts being made to keep kids safe. “I’m not concerned for the schools where policies are well-entrenched,” she says. “But I am concerned for the ones that are sitting on the fence. I’m concerned for the parents who are just learning how to do this, since it could make it harder for them to get people to understand what they’re going through.” Perhaps even worse, articles suggesting food allergy fears are overblown could prevent people from standing up for themselves or their children.

The articles show there’s so much more education to be done, says Muñoz-Furlong. “This is about children,” she says. “It’s not statistics, it’s not about FAAN and research studies and how many people die. It’s children. And we need to remember that they’re the most vulnerable part of our population and they’re the future. If we don’t protect them, what are we saying to them?”

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