Desensitization Programs in the US -- OIT SLIT SCIT

[LinksEtc]

Allergist Who’s Driven to Solve the “Whys” of Food Allergy
http://allergicliving.com/2015/06/09/allergist-whos-driven-to-solve-the-whys-of-food-allergy/

Contributing Editor Claire Gagné spoke to allergist Corinne Keet about her current research, her personal connection to the disease, and what it was like to cast doubt on the effectiveness of OIT.

I think it’s really important that these therapies are rigorously evaluated before being adopted in the community. These treatments are not low risk, and it’s essential that we understand the benefits and the risks.

[ninjaroll]

Something I'd like to add to the topic in general is benefit to the patient, not a therapy driven and marketed to alleviate collateral inconvenience to communities in which the afflicted individuals live in.  Sadly, depending how far in to the for profit pharm industry nonprofits are tied to OIT therapy are, this needs to be stated with absolute clarity.  We can't be sold on a singular leading therapy, or sold the patented therapy itself, by the same entities that purport to advocate for us.

As long as there continues to be some transparency, open sourcing and honest data it shouldn't be too much of an issue although it does create a more defined conflict of interest that should be addressed between detailed expenditures and solicitation for dues.  I will be watching that line if it is crossed and it will not be just as an 'allergy mom'.

[LinksEtc]

Tweeted by @CNNMoney


"Peanut allergy drug slated for 2018"
http://money.cnn.com/2015/06/23/news/companies/peanut-allergy-drug-patch/index.html?sr=twmoney0623peanutallergy230pstory

The drug -- called Viaskin Peanut

[ajasfolks2]

In regard to OIT:

I want some honest data.

I want details on # of anaphylactic reactions (with or without Epi) BEFORE treatment as compared to # of same AFTER treatment.

I want hard numbers as to IgE and uKnow component and skin testing BEFORE treatment vs AFTER.

I want hard numbers as to GI issues and related BEFORE vs AFTER.

~ ~ ~

Is the quality of life "improvement" after just so subjective that it cannot ever be quantified?


Is OIT actually giving (some?) LTFA patients and/or parents a false sense of security?  {yes, I asked that.}

~ ~ ~

These questions and more after again recently seeing board certified allergist who still is among those stating OIT for general LTFA populaton is NOT READY FOR PRIME TIME.

[lakeswimr]

I think you could get answers to most if not all those questions if you called some of the places doing desensitization.  The place we are going claims something like a 95% success rate.  We feel the quality of life difference is enormous. They are taking surveys of patients in order to quantify it.

[ninjaroll]

I think ajas means to a depth never before undertaken including cross-sectional and longitudinal like it actually exists and matters, peer-reviewed, successfully replicated with consistent results for apples-to-apples comparison which is woefully missing under the amorphous term research.  Good data science isn't about numbers being generated, it's about whether it stands up to scrutiny and can defend its weaknesses.

[CMdeux]

Exactly-- while a 95% success rate sounds really good-- and, um-- it IS-- is that truly of a cross-section of the allergic population?

Or do patients SELF-select out?  Are they (subtly) steered out by clinicians who have a gut sense of who isn't a good risk?

Because those kinds of details really, really matter. 

I mean, I understand that one may never truly get great answers to those questions-- because no patient (or parent) is going to stand for being in a control group that they can't opt out of-- or, for that matter, in an experimental one that they can't drop out of, either.

The drop-out rates in OIT studies were pretty interesting-- and the drop out rates were pretty significant in the experimental sides, every time.  About 10-20%.

It seems to work really, really well -- for some people.  And maybe not much if at all for other patients.  Thing is-- who is who?  How do physicians know?  Do they know?

[lakeswimr]

The place where DS is going does not let anyone who had the most severe of anaphylaxis events do it.  People who were on life support, etc would be excluded.  No one is subtly steered out of it.  There are set guidelines for who they take and who they do not.

They are in close contact with other places doing desensitization, one in California in particular, and regularly compare results and are apparently getting the same results.

Again, you could call them and ask them about drop out rates, etc.  I'm sure they would be very open with you. 

It seems to work really well in there with the people they are doing it on and in the California clinic as well. 

If I had only read here and hadn't had a friend push me to look into it I wouldn't have dared to try it.  I called and talked to them and I'm so glad we are doing it.  It has made a giant difference for all of us in a very positive way.  I would not ever say it is for everyone and it is a big commitment and wouldn't work easily for everyone.  For example, kids who do sports and are very busy would have a hard time finding a time to take their daily dose.  Not showering one hour before and 2 hours after the dose and not exercising 2 hours after the dose can both be challenging.  Always having safe carbs on hand for him to take with his dose means thinking of that daily.  They may seem like small things but in a busy life they can be difficult to make sure happen every single day.  The location isn't all that close and we had to drive home late in traffic and that was a commitment, too. and not all insurance will pay for it so it could be cost-prohibitive. 

But I have felt it was very safe for DS.  I encourage anyone interested in it to call places offering it and ask them questions if you have questions.  Maybe their replies will make you feel it isn't for you or maybe they will make you feel it is. 

[lakeswimr]

I feel and so does DS's allergist that not doing desensitization is also a risk.  DS has so many FAs and the average person with even just one FA has an accidental exposure once every maybe 5 years.  MFAs might make that accidental exposure more common.  Eventually he was going to accidentally eat peanuts and who knows what would have happened if we didn't do this.  It isn't as though not doing carries no risks. 

[aggiedog]

I know that the group that did dd's OIT uses her data for research.  At least, we signed releases to that effect, and they've made passing comments about "when we were presenting this at XXX."

Best I can do.  I do think if you called one of the groups doing it, they would be open with their results.  I had a long (almost an hour) discussion with one of the doctors before dd began. 

And I'll say it again, for my dd, it was life changing.  I know everybody is different, but for her, it was a hit out of the park.  And hopefully, her data can help other kids someday.

[hk]

Our allergist told me last week that he will offer OIT for peanut starting next month and for multiple allergens in six months.  He said he could treat all of dd's allergens at the same time.     At last year's appointment, he was pretty negative about OIT and he had previously told me to stay away from the Stanford trials as he thought the protocol was too aggressive and that they were not reporting or adequately treating some of the reactions.  I asked if he would follow a different protocol than Stanford and he said it would be about the same.  That seems like a pretty big change of opinion in one year.  This also coincides with the two older doctors in the practice retiring.  I had houseguests active right after this appointment so this is the first time I've had to even start thinking about the conversation. 

[Beach Girl]

Lakeswimmer, I just emailed you to the email address in your profile.  I have some questions for you.  Thanks!

[ajasfolks2]

 
If I had only read here  . . . 

Speaking for myself, I have read EVERYTHING EVERYWHERE that I can get my eyes on.  (And I'm not sold.)

Given the history of the members here, I would doubt seriously that any of us ever only read here.   


~ ~ ~
 
(ninja, you totally mean what I say . . . or is that say what I mean?     )

[ninjaroll]

I couldn't say about us individually, ajas, but more towards who adheres to the wider terms of data science standards.  It's what helps us recognize word of mouth testimonials are great for trustworthy advertising but unfortunately not disciplined, significant findings that are safely and reliably generalized to the public. 

I believe where we are as a wider population is very aware of the possibilities of OIT but not nearly of its limitations specific to subsets of our population.  That's kind of the point of peer review, replicability and so forth; there is no one source that becomes truth.

[ninjaroll]

I guess what I'm trying to say is all of it is on the table, including word of mouth testimonials, community endorsements but to not recognize the difference between the former as distinct from clinical trials, studied subset populations noting their exclusions, methodologies, and measurements working towards reliable outcomes promotes medical gaps where informed consent declines and vulnerable populations can get left even further behind, or suffer from unintended consequences.

How many times have recommendations to introduce foods flip-flopped?  It's shifting sands at best in allergy.