I woke up this morning to at least 10 emails from well-intentioned friends and family telling me, in not so many words, "Probiotics cure peanut allergies. Quick, run out now and buy them." Being a food allergy advocate, I had already read the study to which they were referring. While I found it interesting and believe it may add a valuable piece to the puzzle that is food allergies, it was so very far from what the headline screamed. What the conclusion of this small study, with no long-term data, was in my humble opinion is that adding a probiotic to traditional OIT (oral immunotherapy -- which is when the patient is fed increments of their allergen) may result in a lasting decrease in the allergic response. But a cure? Not exactly...
Sensation headlines in journalism can be very misleading. A friend told me that her allergic son saw the tag line for this study on CNN and ran excitedly to the next room yelling, "Mommy, there is a cure now for my allergy." This kind of reporting can lead others to downplay the severity of the food allergies while reducing the importance of educating the increasing prevalence and persistency of food allergies and what can be done to combat them. As an advocate for food allergic passengers on airplanes, I sometimes hear from airlines, " We won't have to worry much longer about nuts on planes because there is a cure on the horizon."
These purported cures are usually the preliminary results of a clinical study. A clinical study is not a treatment you can get in your allergist's office.
Putting your child in a clinical study requires a huge amount of courage from both the parents and the child. In our case, our son is wearing a patch of the allergen of which he is deathly allergic. Think about it psychologically -- you are wearing your poison. It certainly gives the child a mixed message and creates confusion when the child is aware that the same substance that can kill him will be applied daily to his body.
When we first began our study, we did not know what to expect. Our son was also understandably anxious. At week three on the patch, my husband and I ventured out for the first time since the inception of the study to celebrate a birthday at a restaurant 10 minutes from our home. As soon as we sat down, my phone rang. My babysitter (who is a nursing student) reported that our allergic son is vomiting repeatedly. To be honest, we had the stomach flu run through both older children the prior week, and this was the most likely explanation for his vomiting. But in the back of your mind you remember that a symptom of anaphylaxis is vomiting, and he is wearing poison.
I raced home to find my 8-year-old still vomiting in the bathroom. He looked up at me with these huge sad eyes filled with tears. But there was something else in his voice. It was fear. My son was scared for his life. I don't think I have ever felt that kind of emotional pain. I promised him that his vomiting was not from his patch, and that I had read all the patch study side effect results published in Europe (who were ahead of us) and he was only sick like his brother and sister were the prior week. But as a master's of science graduate, I know all too well that the patch is not yet a proven treatment. It's still an experiment, and aberrant side affects can happen. I reassured my son that I would sleep with him and I kept a fistful of Epipens next to us. I kept on thinking how unfair it was that my 8-year-old son had to consider his mortality at such a young age when afflicted with a simple stomach ailment.
Being in a clinical study has also given my son a sense of empowerment over his allergy. He feels he is making a difference and can potentially help children just like him. The patch study results are trickling in and so far have certainly been positive. OIT and Chinese herbal therapies have also yielded positive results amongst others. We have no idea which of these many clinical studies will turn out to be the "cure," but we are proud to participate in the effort to discover it.
What we really need are more people to enroll in clinical studies and less reliance on sensational headlines for solutions. FARE (Food Allergy Research and Education) answers frequently asked questions on their website and provides guidance on how to participate in a clinical study. The more data scientists have, the more likely they are to develop a lasting treatment or perhaps that elusive cure. So just remember the next time you read a sensational headline touting the answer to the riddle of food allergies. This race is not going to be won by astounding sound bytes, but rather by the persistence of analytical research and clinical science.