Communication Breakdown - No, I Didn't Say Treatments are Cures

What's quoted in the media isn't always what it seems. Unfortunately, I was reminded of this because of a misquote involving me that reared its ugly head after googling "Jessica Martin food allergy." (Always good to occasionally google yourself to make sure all is good with your public, digital self).

The good news? The Food Allergy Sleuth blog is the top google hit (yay! I'm #1)!

The bad news? Discovering a misquote floating on the internet from my foray into being the science interviewee (at least it was on page 2 since most people don't go beyond the first page, right? RIGHT?!). In the words of the infamous Homer, "Doh!"

Photo credit: Flickr user hobvias sudoneighm

So what went wrong?

Funding better "biomarkers" for food allergies

Update 5/1/15: Congratulations on surpassing the $50,000 funding goal before the April 30th deadline! Here are two wonderful summaries of the effort: Caroline Moassessi of Grateful Foodie and Henry Ehrlich at Asthma Allergies Children weigh in.

When our food allergy journey started out, one of the most challenging things to wrap my head around was allergy testing. I distinctly remember looking incredulously at our allergist and thinking, “You mean to tell me that a “positive” blood test or that giant hive from a skin prick test doesn’t necessarily mean our son has a REAL food allergy? What good is that?!”

Two common allergy tests rely on the IgE antibody as a "biomarker." The tips of the IgE antibody recognize specific food proteins, such as those found in a peanut. Blood tests measure the amount of IgE for a specific food that is found in the blood and skin prick tests look for the result of a food protein binding to IgE attached to a mast cell in the skin. The release of histamine (among other chemicals) causes the wheal or hive in a skin prick test. Image source: Atlas of Allergic Diseases

What I have learned over the course of several years is that there really are no great tests for food allergies – i.e. “biomarkers” –aside from actually consuming the food (oral food challenge supervised by a clinician). The two common current methods of testing - blood tests measuring food-specific blood IgE levels and skin prick tests that scratch the allergen into the skin surface are not a great tests because they frequently give “false positive” results. A “false positive” means that a person may test “positive,” but truly isn’t positive should they actually consume the suspected food. Frustrating. On top of this, most current testing methods that rely on IgE as a “biomarker” cannot predict how severe the allergy is. The only sure way to test for a suspected food allergy is to go to your allergist’s office and perform the supervised oral food challenge – you know, the test where you actually eat the suspected allergen and wait for a response. Having done this with my son several times now, I can’t stress enough just how stressful this stressful test is. There has to be a better “biomarker” – a test without the stress and risk of a reaction that can better predict an allergy and its severity. 

Image source: Selena Bluntzer from Amazing and Atopic

To help solve this problem, Dr. Xiu-Min Li, Professor of Pediatric Allergy and Immunology at the Icahn School of Medicine at Mount Sinai, and board-certified allergists Dr. Paul Ehrlich and Dr. Purvi Parikh designed a collaborative, practice-based study whose primary objective is to figure out better biomarkers of allergy (details of the study and how you can directly fund the study).

Headline hyperbole - probiotics cure peanut allergy?

Note about study discussed below – please do not try oral immunotherapy (OIT) or OIT with probiotic supplements on your own! This is an experimental food allergy treatment to be performed under strict medical supervision.

In the latest edition of medical headline hyperbole, many of us learned last week that “Fatal peanut allergies could be cured by probiotic bacteria, say Australian doctors” and “This Breakthrough Treatment Helped Over 80 Percent of Allergic Kids Tolerate Peanuts.”

Sigh… We all want a cure, and many scientists/clinicians are working tirelessly toward that goal (including the research group that performed the original peer-reviewed study(1)), but please, oh please media, stop overselling the scientific findings! I’m quite literally tired of having to explain the same thing over and over again! Unfortunately, there is a reason why one of my blog labels is now “Misleading Science Headlines.” I don’t necessarily want to go into the details of why this is so detrimental to both the science and food allergy communities, but rather I’d like to take the rest of this two part post to explain why the headlines got it wrong, what can actually be concluded from the study, and where the science may go from here. Lianne Mandelbaum, who founded No Nut Traveler, authored an excellent piece at the Huff Post Blog explaining why misleading headlines are such a problem when it comes to food allergies. I encourage you to take a read.

Brief summary of the study:

Mimi Tang, et al., from the Royal Children’s Hospital in Melbourne, Australia tested if the combination of oral immunotherapy (OIT) and a probiotic supplement could lead to “sustained unresponsiveness” in peanut allergic children compared to a placebo group  (peanut allergic children who did not receive peanut OIT or probiotic). They found that after stopping treatment (ranging from 2-5 weeks) over 80% of children who received OIT + probiotic maintained a “sustained unresponsiveness” to peanut compared to only 3.6% of the placebo group (1).

Study design: Randomized, double-blind, placebo-controlled