The New York Times Magazine published an article in March 2013 called “The Allergy Buster” that has generated much discussion about food allergy and excitement for potential treatments under study. The article brought much-needed attention to food allergies, and its intent was clearly to help others better understand and empathize with those living with food allergies. However, some in the food allergy community have expressed concern that certain aspects of the article may have the unintended consequence of actually increasing anxiety and misunderstanding.
The discussion around this article has become a wonderful opportunity to explore with our patients their concerns about the real risks of food allergy, their hopes for a cure, and their understanding of where things stand in that search for a cure. Since you may have some of the same questions, allow me to review some key perspectives and hopefully find common ground on which we can all agree.
THOSE living with food allergy are all too aware of the risks of accidental food allergen ingestion. However, we strive to provide our patients a balanced approach, where we encourage vigilance at reducing those risks, but work to prevent that from evolving into debilitating anxiety. This requires a clear understanding of the real risks of food allergy.
One area fraught with ambiguity for patients is food allergen labeling laws. The Food Allergen Labeling and Consumer Protection Act (FALCPA) does not permit any of the eight major food allergens to go unlabeled as ingredients, regardless of the quantity present. However, what is very troublesome to families is that FALCPA is silent on the issue of cross-contact.
Cross-contact can and does sometimes occur in manufacturing. There is no guidance given to manufacturers as to when a precautionary label (often referred to as a “may contain” warning) should be included. Fortunately, efforts are under way by the Food and Drug Administration (FDA) to help reform how manufacturers use these precautionary statements.
Another important point of discussion raised by the Times article is the true risk of anaphylaxis due to skin exposure to food allergens. In the Spring 2013 issue of Allergic Living, Dr. Scott Sicherer addresses this question (pages 24-25), explaining that anaphylaxis from skin exposure is very unlikely because the skin barrier prevents the protein from entering the blood system. So, for most with food allergy, playing a game with a ball that had briefly contacted an allergen would not be expected to pose a significant risk of anaphylaxis.
Also of concern to patients was the reference in the Times article to a mortality rate from food anaphylaxis of 1 per 1,000 for “severely allergic” children. It is critical that patients understand that this figure was derived by comparing the estimated number of food allergy deaths in the U.S. to the number of annual emergency department visits for food anaphylaxis. Another approach favored by many puts the risk at more than 100 times lower, or five to 10 per one million. This approach has the advantage of making the comparison to the total food allergy population in the U.S.
Undoubtedly, even one death from food allergy is a tragedy because it could have been prevented. For those with food allergy, it is important to understand that this risk can be significantly decreased by exercising vigilance in avoiding food allergens and always having access to epinephrine.
Another area of discussion after the Times article revolved around the emotional toll that food allergies can take on families, particularly when severe allergic reactions have been experienced in the past. Our goal is always to help families work through their fears and arrive at a place where affected children feel safe and in charge of their allergies.
Certainly, the psycho-social impact of food allergy is real and, as research is beginning to demonstrate, often detrimental. But there is help, and fear should not be accepted as the norm for those with food allergy. For times when anxiety becomes overwhelming, a counselor, psychologist, or psychiatrist can teach specific coping mechanisms.
While no one would choose to have a food allergy, some of our young patients have gained great empowerment from their experience – a sense that if I can manage my food allergies, I can do anything. So, as the name “Allergic Living” epitomizes, a balanced approach is important to ensure that having a food allergy does not prevent one from truly living.
Quest for a Cure – Where the Research Stands
Every family affected by food allergy is hoping for a cure. And many researchers, including those in the Consortium for Food Allergy Research and other groups internationally, have been working for years towards that goal. The reality today is that oral immunotherapy (OIT) is still experimental, and has not been proven the “quick” cure for which everyone hoped.
Indeed, Dr. Kari Nadeau, whose important research is featured in the Times article, has clarified that the stories in the article are of “three people and their families; no generalizations can be made from their stories; there is no cure at the current time; and any therapy for food allergy is experimental, risky, and might not work long term.”
In the Spring 2013 issue of Allergic Living, Dr. Sicherer reviews the current state of OIT research. He explains that there is evidence that OIT, during active treatment, can increase the amount of the allergen that a person can eat before developing symptoms. However, there are several ongoing questions and challenges, such as some participants who cannot move forward due to allergic reactions, unexpected reactions to doses previously tolerated, and loss of protection, sometimes quickly, once daily allergen doses are stopped.
A recent follow-up study from Johns Hopkins University of 32 children who had completed milk OIT raises additional concerns that the desensitized state achieved may not last long-term. For example, 38 percent of the study subjects were having frequent symptoms from milk three to five years after the trial ended (19 percent had symptoms severe enough to require epinephrine). So, while early OIT results may be encouraging, there is much research that remains to be done.
Importance of Philanthropy and Research Participation
Large, comprehensive research studies will be required over the coming years to eventually identify successful treatments for food allergy. The main challenges to that goal will be securing adequate funding and research participants. The Times article highlights the positive difference individuals can make through grassroots fundraising and participation in research trials. As philanthropic efforts for food allergy research grow, the allocation of those research dollars to local communities will be an important consideration.
Much of the early research in OIT and other potential food allergy treatments have been conducted among a small subset of the food allergy population. Going forward, it will be critically important to recruit larger numbers of participants, in an inclusive manner, being careful to allow access to research for all groups, from diverse geographic, socioeconomic, and racial/ethnic backgrounds.
The Times article focused needed attention on food allergy, and even more beneficial, the discussion that has ensued has provided the opportunity to correct some important misconceptions. Much more research will be needed before safe and effective treatments for food allergy are available. Our collective hope for a cure should motivate us to support those research efforts. In the meantime, until there is a cure, we should all strive to help those affected by food allergy to reach their potential – living safe, healthy, and highly fulfilling lives.
Dr. Sharma is an allergist, clinical researcher and assistant professor of pediatrics. He is Clinical Chief of the Division of Allergy and Immunology at Children’s National Health System in Washington, D.C. and Director of the Food Allergy Program. Questions submitted below will be considered for answer in the magazine.