* CDC. HIV Surveillance Report,2013; vol. 25. Published February 2015.
+Case Fatality and Population Morality Associated with Anaphylaxis in the United States, J Allergy Clin Immunol. 2014 Apr; 133(4): 1075–1083. (includes deaths due to anaphylaxis from any cause)
Dr. Baker began his introductory comments comparing the food allergy epidemic with the AIDS epidemic. I understand the analogy, but I also found it offensive. Obviously, I feel passionately about food allergies. I can feel passionately about food allergies and compassionately for people fighting other battles. I also know well the struggle with anxiety that people with food allergies face. And, to catastrophize food allergies raises the often high anxiety of people's real stress learning to manage food allergies.
Every life lost, in both column, is a tragedy.
Dupilumab
The first treatment that Dr. Baker spoke of, it's currently in trials for eczema and asthma and has good results so far.
As a basic review (forgive my simplification), the portion of the immune system that regulates the immune system is Th2 (stands for T-helper). And when TH2 cells are activated, there are (scientific jargon coming) a whole mess of proteins they can release. Two of these are IL-4 and IL-13 (IL=interleukin, which is not nearly as easy to remember as T-helper. Dupilumap was developed to block the release of IL-4 and IL-13.
He stated that for the six months it has been trialed, it has been shown to be safe, with the people in the placebo group to have had greater side effects, from their uncontrolled eczema and asthma.
My thoughts
For many people with allergies, eczema and asthma are an enormous problem, if not a greater problem. I well remember the impact of sleepless nights from when James had hives. I can only imagine uncontrolled eczema, the fear of infection, the itching, and the pain. Hopefully, this will offer relief for those people who have tried everything and cannot find it.
To present this first, and seemingly as the best hope, for people with food allergies when not a single piece of data has been collected regarding food allergies seemed odd. It's data I agree, I would love to see. In a conference, where parents have come to get "New Hope," I'm concerned it may have been putting the cart before the horse to suggest that this will provide a cure. In my first post, I analyzed three different food allergy treatments currently being used, in private practice and in trial. I could have added more.
And always, I was concerned about the six months of safety data. That, of course, is the risk/benefit analysis that we as parents, as people, as patients have to make every time we choose to take (or not) a medication.
Part 2: The Peanut Vaccine
Part 2: The Peanut Vaccine
Good job on summing up Dr. Baker's talk. I share your concerns too about the cart before the horse. This is one reason I am a fan of Dr. Ruchi Gupta and the researchers at Northwestern. They are working on basic data that validates and vets food allergies. I hope to see what she is working on now. Actually, I just emailed her to ask! I really enjoy your blog---keep up the good work.
ReplyDeleteGood job on summing up Dr. Baker's talk. I share your concerns too about the cart before the horse. This is one reason I am a fan of Dr. Ruchi Gupta and the researchers at Northwestern. They are working on basic data that validates and vets food allergies. I hope to see what she is working on now. Actually, I just emailed her to ask! I really enjoy your blog---keep up the good work.
ReplyDeleteThank you so much. I will be quite honest and say that, although I am, of course, familiar with her name, I am not familiar with Dr. Gupta's research. Thanks for giving me another avenue for exploration.
ReplyDeletehe is so much more about producing more pharma and asking us support group leaders to give him subjects I was turned off several times during the meeting. He also totally disrespected Dr. Li's work which has horrified many as unprofessional. I wish I had a camera in the room but I did take pictures of slides. FARE has gone a diff. direction. OIT or bust it seems. I would love to see a more well rounded foundation discussing causation, real world inclusive developments in a less invasive way than blocking side effects of OIT with more and more pharma. Just saying. I know I am not alone in that meeting with what I heard and felt. I was open minded but felt like my daughters medical treatment got slammed for no reason except it is not a money maker for FARE yet. big OOPS!
ReplyDeleteI completely understand your frustration Yael. I'm hoping in the future there will be multiple options available and your Dr will be able to help assess what is the best course for you individually. We are definitely not there yet.
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