Experiment vs. Treatment

This weekend I’m heading to Buenos Aires, Argentina for a week. You probably won’t hear much from me next week as a result. While I’m there, I’ll be giving a short talk that presents preliminary findings from the allergy clinic-focused side of my research. In particular, I’ll talk about some new developments in how oral immunotherapy (OIT) is being used to treat environmental allergies.

(For the purpose of this blog post, I’m including sublingual in this category for convenience’s sake, though there may be a scientific case to be made that the oral cavity in general differs significantly from the sublingual area.)

As I’ve been putting it together, I’ve been drawing on interviews with medical professionals and businesspeople. The patient side of the story is really missing from this talk, an issue which I hope to remedy as it evolves into a published scholarly paper or dissertation chapter. As I’ve been writing, I’ve started to wonder about what motivates people who participate in trials of new treatments for allergies.

In the case of oral immunotherapy for environmental allergies, the new treatments I’ve been following – some of which have just hit the market, like Merck’s oral immunotherapy tablets for Timothy grass and ragweed, and others which are still experimental – are incremental upgrades of the more traditional subcutaneous (shot) administration of allergen extracts. The active ingredients, concentrated allergen extracts, are the same. The problem researchers and drug companies are trying to solve is figuring out a way to administer extract in a way that is easier for patients. There’s a decades-long precedent of using OIT to treat environmental allergies in Europe, and several times in the past century doctors in the US tried to bring the method into vogue here. So it’s not a huge conceptual change from the shots, and it’s a treatment that has been well vetted in other regions and at other times and found to be about as safe as subcutaneous immunotherapy. The risks are pretty minimal for those adventurous folks who want to sign on to an experimental protocol and pay out of pocket for treatments that are not yet covered by most insurance plans. Still, the various methods of administering OIT for environmental allergies still rank as “experimental” in US medicine, or did until very recently.

Trials of OIT for food allergies are much more controversial. Immunotherapy for food allergies seems to carry a much higher risk for anaphylactic reactions than does immunotherapy for environmental allergies – so much so that although any doctor could choose to learn how to do it using standardized allergen extracts in their office, very few actually do. I’ve spoken to a few people involved with some of the big trials of this method (both on the patient and physician side), but not enough to make definitive generalizations about why people try this method. So far, it’s been suggested to me that it’s worth trying because there’s no other promising treatment out there, and that pursuing any hope of living with less fear of a serious reaction is worthwhile.

So here’s what I’m wondering: What’s motivating people with allergies to get involved with trials for immunotherapy, either for environmental or food allergies? What motivates patients and physicians to be “early adopters” of new treatments as they are written up in scientific articles and/or approved by the FDA? When someone is considering trying an “experimental treatment” for allergies, do people who sign up do so because they’re interested in treatment, because they’re interested in helping out scientific progress by participating in an experiment, or both? How do people who take part in trials balance their hope for relief with the fact that their response to the treatment is, by definition, uncertain? Do these motivations differ between food allergy and environmental allergy? Are any such differences related to the characteristics of the conditions and the different ways in which they impact peoples’ lives?

This is something I’ll continue to look into in the coming months. I’m especially interested in talking to people with allergies and allergy researchers about this during some conferences I’ll be attending this fall and winter. Please leave a comment or say hello on Twitter if you’re interested in weighing in!

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