Desensitization Programs in the US -- OIT SLIT SCIT

[guess]

Moving the goal post from full on tolerance to blunting reactions and threshold stretching seems the smarter objective until we understand what OIT desensitization looks like both longitudinal and cross-sectional.  Maybe if you're in a position where you're only one single allergen away from the American dream full on OIT becomes the brass ring to grab but if you've got even a degree of medical complexity either in the allergic individual or throughout the family then smaller facets of life improvement appear in greater relief.  In other words I'd like to see more research towards SLIT at younger ages than the OIT merry-go-round that spits out the same Magic 8 Ball answers. 

[Macabre]

I don't know if I've posted it upstream, but the SLIT DS and I are doing at La Crosse has a very different goal than the SLIT and OIT studies I've seen:  to raise the threshold/reduce the risk from accidental ingestion. Not ingestion itself. The length of treatment is also different: four years.

This works for us.  It would be so cool just to eat a sandwich out or not to have to avoid anything grilled.  Or to be able to go to a Mexican restaurant and eat tortilla chips even if they've been fried in the same oil as shrimp (which is so often the case).

And of course, for DS, as he goes to college in two years--well, the cool factor is just pretty self-evident. 

[LinksEtc]

Tweeted by @FoodAllergyNCBI


"Sublingual immunotherapy for peanut allergy: Long-term follow-up of a randomized multicenter trial."

Burks AW, Wood RA, Jones SM, Sicherer SH, Fleischer DM, Scurlock AM, Vickery BP, Liu AH, Henning AK, Lindblad R, Dawson P, Plaut M, Sampson HA; for the Consortium of Food Allergy Research (CoFAR).

http://www.ncbi.nlm.nih.gov/pubmed/25656999?dopt=Abstract&utm_source=dlvr.it&utm_medium=twitter

Peanut SLIT induced a modest level of desensitization, decreased immunologic activity over 3 years in responders, and had an excellent long-term safety profile. However, most patients discontinued therapy by the end of year 3, and only 10.8% of subjects achieved sustained unresponsiveness.

[LinksEtc]

Tweeted by @IgECPD

Julie Wang presenting data on Chinese Herbal Medicine (FAHF-5) as a treatment for Food Allergy #AAAAI15

&

Wang: 17% success in the treatment group and 45% in the placebo group. Yes you read that correctly...this was a 'negative' study #AAAAI15

[ninjaroll]

How does everyone feel on OIT on the priority list of food allergy organizations and your personal priority list? Specifically OIT, not SCIT or SLIT. This might be more of a note to myself to make a poll later.

[LinksEtc]

Not ignoring you NR ... don't have much of an opinion.


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"AAAAI 2015 Pro-Con Session: Is OIT Ready for Prime Time?"
http://www.amazingandatopic.com/2015_04_01_archive.html

[lakeswimr]

I don't like the idea that there has to be a priority list and hope that FA organizations can take on top FA issues without doing so at the expense of other FA issues.

As for OIT, from what is happening at the New England Food Allergy Treatment Center and apparently the other places they share research and information with, it seems highly successful with a success rate, close to 95% getting to 3 or more peanuts a day.  Their new goal is to get people to 10 peanuts a day.  Apparently they are finding good success at passing full challenges after 6-12 months at that level. 

For us personally this is 2nd only to day to day avoidance of things that can cause him to react in importance. Long term it is the most important thing regarding his FAs.  He already does not have to sit at the peanut/nut-free table, can eat lots of things he couldn't eat before, and is getting treatment for another FA now.  His very long list of allergens is changing and the future looks very bright.  I don't know if he can ever be FA free but already it is a huge improvement in quality of life.   

Seeing as it seems to have a high success rate I think it makes sense for FA organizations to focus on it.

[ninjaroll]

FARE invested in a company that produces OIT materials -- pharmaceutical grade to guarantee no cross contact, and potency for lack of better word. The main product is AR101 or CODIT. In their financial disclosures, it's listed as "ownership interest" in Allergen Research Corporation, renamed aimmune Therapeutics.

I understand they had quite a few large donors who may have wanted this specific action, and that they worked with venture capitalists to launch research for AR101 through their CODIT system. The only portion that surprises me is that they didn't announce with any fanfare, or make a presentation during the FARE conference. I would have loved the opportunity to learn more about it.

I don't know about the pharmaceutical industry so I don't know how meaningful it is that this is a patented peanut OIT delivery. I think that means a closer move to national roll out? That makes sense to evolve the treatment landscape from the existing patchwork. The longitudinal and cross-sectional data doesn't seem to support peanut OIT.

http://www.aimmune.com/about/history/

We aim to fulfill the 2011 shared vision of establishing a standardized OIT product and protocol, to be made available in allergists’ offices nationwide and beyond, so that people with food allergies can live with less fear and more safety.

[lakeswimr]

This is the first I am hearing of that.  They use actual food at New England Food Allergy Treatment Center. 

Did you see that survey that came around, I think it was here, asking what we would think about doing a desensitization treatment at home on children under age 5 and it was asking about cost and other factors involved.  I wonder if that was related.

[LinksEtc]

Did I say that I didn't have an opinion?

Sigh.

Given what NR posted, seems like another possible conflict of interest at FARE?

I don't like it.

Speaking in general terms here ... treatment recs should be based on science & evidence ... not patient org financial interest ... again, not speaking specifically about this situation.

When research is funded, it shouldn't be done with the intention of rolling out a specific treatment ... it should be to find the truth about whether the treatment is safe & effective.  Research should be as objective & transparent as possible, bias minimized.

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ETA:


http://www.amazingandatopic.com/2015_04_01_archive.html

“How can we even argue that we should be moving forward with a potentially dangerous treatment before we've done the usual studies that would be required to bring a new treatment to the prime time. [In fact], the only reason we can do it, is because the treatment is available in the grocery store. If this was a drug, it would be far from approval, far from use, and no one in this room would touch is in their practice, as it has not been adequately studied.”

YK, I've never met Dr. Wood, but I trust him ... I trust that he has patient best-interest at heart.

My personal opinion ... I do not always trust FARE's intentions.

[CMdeux]

I don't either.

I also don't like that a food protein is being moved into monetizing position here with a PATENT-- no, no, no.

One reason why SCIT has been relatively affordable and available to hundreds of thousands of patients over the past six decades is that the extracts are NOT "patent" materials.

 

This is like patenting BRC genes-- I don't like that either-- because when you start making naturally-occurring nucleic acids, proteins, and the like someone's intellectual property, you are CONTROLLING HOW THEY CAN BE USED.  Even for research purposes.

My gosh I don't think that is a good thing here.  NO way.

[ajasfolks2]

Makes me want to re-read FARE's charter and stated mission vs this investment.

I'm not quite sure what to think??

[LinksEtc]

This comes to mind for me ... it may not be a perfect comparison ... but I think the FA community really needs a little self-reflection ...




Re: If you were an allergy researcher ...

"Stop Subsidizing Big Pharma"
http://www.nytimes.com/2015/01/06/opinion/stop-subsidizing-big-pharma.html?smprod=nytcore-iphone&smid=nytcore-iphone-share

ROBERT J. BEALL, the president and chief executive of the Cystic Fibrosis Foundation, called his recent decision to sell the royalty rights to his organization’s research a “game changer.”

So far, there is no effort to extend government price controls to venture-philanthropy-derived research.

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"Deal by Cystic Fibrosis Foundation Raises Cash and Some Concern"
http://www.nytimes.com/2014/11/19/business/for-cystic-fibrosis-foundation-venture-yields-windfall-in-hope-and-cash.html?_r=0

there is some concern that a profit motive could divert the organizations from their primary mission — helping patients — and create a conflict of interest.

Critics say that perhaps because a higher price means higher royalty payments, the foundation did not do enough to bring the cost down.

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ETA
Aimmune, AR101 and CODIT: FARE

[ninjaroll]

I'm not comfortable with the investment in a private, for-profit company that would sell treatment back to us. At the very least I believe the ethical business decision here is to spin off that portion into its own company separate from the nonprofit organization. Yes, it would essentially dissolve the FAI-FAAN merger that resulted in FARE but despite their contracted external audit (which they consider "independent") giving the thumbs up.

The standardization of pharmaceutical grade allergens for OIT is great, at least theoretically. I'm uncomfortable that FARE as a nonprofit raised the venture capital for the for profit company. This also doesn't sit well with me; advocacy is for the individual's rights and protections. The statements of the CEO of this corporation with FARE investment should be repeated on FARE's website, not just ARC's (now Aimmune).

“When you look at statistics for the entire U.S. population, a food allergy reaction sends someone to the emergency room every three minutes,” said ARC CEO Bryan Walser, MD. “The constant vigilance required for allergen avoidance creates stress not just for the affected individuals and their families, but for whole communities trying to accommodate and protect the individuals. Treatment with OIT could be like using safety belts and having airbags in a car—we want it to be available and used to protect children and their families.”

I have to think on this a bit. It's a mixed bag.

[Macabre]

Hey FARE, does this not lead to a false sense of security?


Just had to say that. I am actually a fan of OIT and SLIT as far as I inderstand them, and I have had very serious conversations with a doctor about doing OIT but we are doing SLIT.