With more and more families taking advantage of private practice oral immunotherapy (OIT) treatments across the United States, now available in at least 22 practices, many parents are wondering what path is best for their own child. In addition, friends and family of those with food allergies, often feeling put out by requests to accommodate food allergic children, are wondering what the big hold up is. Many are asking:
“If this is the miracle cure we’ve been looking for, why isn’t everybody doing it?”
OIT has been successfully desensitizing food allergy patients through controlled studies over recent years and is showing much promise but OIT is not a cure for food allergy. Patients who successfully complete OIT treatments are required to remain on a daily maintenance dose of their allergen, must carefully monitor additional changes in their health (such as colds and exercise), and are still prescribed epinephrine to be carried at all times as (while minimized) the risk of anaphylaxis still exists. In addition, other long term risks, including overall quality of life, have yet to be fully tested.
James R. Baker, Jr. M.D. CEO of Food Allergy Research & Education (FARE), a non-profit organization currently organizing and funding the research of these types of treatments, says “There is no standardized, FDA-approved therapy for food allergy, and this includes OIT. We await formal testing of OIT through controlled studies that will provide an understanding about the safety and efficacy of this approach. Only then will we be able to evaluate it as a way to treat food allergies.”
Currently, the only form of treatment recommended by the NIH (National Institutes of Health), CDC (Centers for Disease Control), AAAAI (American Academy of Allergy, Asthma, and Immunology), ACAAI (American College of Allergy, Asthma, and Immunology), FAACT (Food Allergy and Anaphylaxis Connection Team) and FARE (Food Allergy Research & Education), and many others, is a strict avoidance of the allergen itself.
Despite these factors, some doctors have chosen to offer OIT treatments through their private practice and many parents are taking advantage of the opportunity to treat their children in an attempt to free their families from the fear, anxiety, and other social issues that stem from living with severe food allergies.
Amy Hoyal, whose daughter recently completed the treatment says that her daughter had experienced enough allergic reactions that she was developing problems with anxiety. While they worked hard to avoid her allergen as best as possible, they really couldn’t control when others would eat the food she was allergic to, then pass food proteins on to her by simply touching the same objects. Amy said her family was desperate for some relief and this treatment has provided that for them.
While many families are choosing to take advantage of OIT treatments now, many more are choosing to wait for a more fully tested (and hopefully improved) treatment option. In addition, several patients are not eligible for this treatment due to compounding factors. Regardless of whether you or someone you know decides take advantage of this treatment or wait, it is important to understand that there are many factors influencing these decisions on both sides of the equation.
In addition, while each parent must make the choice about which path is best for them and their children now, the choices that each of us make may ultimately affect the rest of the food allergy community as a whole. As Lisa Rutter, Director of Education for the Food Allergy and Anaphylaxis Connection Team (FAACT) states, “If something were to go wrong during an unapproved treatment outside of a controlled study, this promising treatment would be at risk of receiving the further testing that it needs.”
If you are a parent choosing to wait, but you or your child is in need of support now, you may want to consider joining a food allergy support group or seek private counseling services.
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