The Politics of Food Allergy Deaths

Last week I started a post about a topic near and dear to my heart: whether the fact that any kid can die from a food allergy is really the same as whether every kid can die from a food allergy.

Back in 2008, there was some excellent research about the interaction between two molecules in the immune system. Usually, the body signals these molecules to stop when the triggering antigen has been vanquished, but in certain individuals, the rogue molecules simply don't hear the command to stop, causing the reaction to spiral out of control.

Before I go on, let me note that, since 2008, I have heard nothing about this research. That may very well be because it didn't pan out and the genetic issue that causes this out-of-control spiral may not be the whole story with anaphylaxis. We know that food allergy responses can change and that there are other factors that can cause a reaction to spiral, including:

• Hormones. Sadly, Googling food-allergy deaths will lead you to a list of the names of 13-, 14- and 15-year-old girls who fall into this category.  There seems to be an area of particular sensitivity just as girls experience the hormone shift associated with adolescence.  Our allergist once made a curious observation: boys tend to grow out of allergies, while girls tend to grow into them.

• Untreated asthma.  Asthma results in a chronic narrowing of lung bronchi. Because wheezing doesn't occur until the bronchi are narrowed enough, episodes of wheezing are often only triggered by viruses or food-allergy reactions. Sadly, parents interpret these infrequent episodes to mean that their child's asthma is not serious and doesn't require medication. When a full-out reaction hits, areas that are already narrowed and scarred can quickly shut down, resulting in death.

• Young adult immune systems. As with influenza, young adults seem to be most at risk of a "cytokine storm" that can create the out-of-control spiral that can result in shock and death. 

But...what if this genetic clue does have meaning? Or, what if there's a future marker uncovered at some time in the future?

How would your life change if a test could tell you whether your child was likely to die from a food allergy?

The reason that it's taken me four days to get back to this topic is that the above question is particularly loaded right now. Over the last several years, there has been a concerted effort by a few individuals to discount the severity of food allergies: in particular, Dr. Nicholas Christakis from Harvard: This Allergy Hysteria Is Just Nuts, and Meredith Broussard: Everyone's Gone Nuts: The Exaggerated Threat of Food Allergies. Both of these individuals posit that there just aren't as many food allergy deaths happening as people think there are, so therefore the precautions we ask for our children are overblown and a waste of time. It's become such an issue that FAAN recently issued a statement.

FAAN is right: whether one or 100 children die each year from food allergies, there are too many deaths and we should be doing everything we can to protect vulnerable children. We may never be able to tease out who is most at risk. Until we can, all food-allergy reactions have to be regarded as potentially fatal.

At the same time, it's important for the food allergy community to examine the risk realistically. This is very difficult to do officially/statistically because, as FAAN points out, food allergy deaths are often coded as something completely different: asthma, shock, cardiac arrest. However, the food allergy community does a very good job of anecdotally reporting out on deaths that are caused, or that may have been caused, by a food allergy.  While there are a handful of cases each year, there is no evidence of a huge increase in reported deaths, despite the documented rise in ER visits.

This should be good news. It may very well mean that not every individual has the potential for fatal anaphylaxis (or at least not without other mitigating factors like those mentioned above).

What would/will food allergy advocacy be like without the weight of potential death hanging over our heads? Here's hoping we all have the chance to find out.