By Henry Ehrlich
Months ago, we announced a proposal for a practice-based study of biomarkers for anaphylaxis by our contributors Dr. Xiu-Min Li, Dr. Purvi Parikh, and Dr. Paul Ehrlich, to be funded in its initial phases by food allergy families and their friends. Last night, I was informed by the organizers of this crowd-sourcing effort that the funding was now it place. Thanks to Susan Weissman and Selena Bluntzer for their tireless efforts and to the Office of Development, Mount Sinai Health System for their help and support. They did the work; I just cheered them on.
I am not aware that this channel has been used to fund a significant medical undertaking. As medical research goes this is tiny. Full proof of the hypothesis will be much harder and more expensive. Grassroots fundraising can’t compare to the clout of the government, big foundations, and big pharma. But you have to begin somewhere.
This study tackles a big problem from a small corner of the food allergy universe. Just to recapitulate what we have said before on this website, because there has never been a dependable treatment for food allergies, patients have had little alternative but to avoid their triggers, carry their epinephrine, and wait for nature to take its course, which may never happen. In the absence of regular food challenges, which are dangerous, there was no reliable way to track progress towards outgrowing the allergies. Dr. Li and perhaps others have given hope to thousands of families that sitting and waiting may not be the sole option for the future. The basophil activation test [BAT] and other biochemical measures may be useful for tracking “tolerance in a test tube,” i.e. the threat of anaphylaxis in advance of a food challenge. (Oral immunotherapy and sub-lingual immunotherapy amount to daily challeges.)
This “practice-based study” encompasses two practices. One is Dr. Li’s private practice in which she treats patients with complex and severe allergies with traditional Chinese medicine [TCM]. The other is Allergy & Asthma Associates of Murray Hill, where Drs. Parikh and Ehrlich work. They will observe and evaluate patient progress through the lens of mainstream allergy medicine. This study begins in the real world and builds towards the experimental. Most research starts at the other end. Funding for the various medical services will come from patients, either out of pocket, per Dr. Li’s current practice, or from their insurance companies, where it is reimbursable. The funding will cover the science.
All the doctors in this case agree that new models for research are needed. Too many happy, normal childhoods hang in the balance to rely exclusively on the normal Pentagon-like timetables of big government grants. The dozens of donor families have voted with their wallets for both hope and science.
Basophil by Alpco.com