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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.
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 food allergy is downplayed, and that the messaging coming out is confusing to the schools in terms of what they should do or shouldn’t do,” 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, “hysterical” school policies, and an ill-fated 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. Will they make the wrong decisions? 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?”
- Editor’s Note: The Epidemic of Hype.
- Time to End Food Allergy Tragedies: Amarria Johnson and the campaign for stock epinephrine.
- Can this be Chatelaine? A leading women’s magazine scoffs at food allergies.
From the Spring 2009 issue of Allergic Living magazine.
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