[jwstanly]

The skepticism is understandable at least academically. From my understanding FAI isn't prioritizing clinical trials because 1) their individualized process with AI/ML work isn't aligned with classical physician/allergist work and 2) that same time could be spent to grow the program's operation and get more patients off the waitlist.

The individualized work is also why TIP doesn't scale-- even FAI itself hasn't opened offices outside of SoCal yet (east coast patients like myself have been begging internally for years for them to open locations nationwide).

Everyone would love to see FAI be more transparent, but just because they aren't doesn't mean the program doesn't work. Arguing "its not clinically proven, therefore it's not legitimate" feels pedantic when there's thousands of us in remission.

[andrewchilds]

You could also say that OIT "works", just from reading a couple success stories online. But the whole story is complicated. I know a family that spent enormous amounts of time and money on OIT, and ended up stopping due to a random anaphylactic reaction to a maintenance dose a few years in. I think it's perfectly reasonable to want to know what percentage of people have had a negative/mixed experience with TIP. If it's as safe and effective as they claim it is, that's truly incredible - and I'm glad to hear it worked for you! But I need real clinical trial data before I sign my kid up for it.

[jwstanly]

That's very fair, I'd want to know percentages before signing up too. Personally my family learned "TIP is legit" through word of mouth as well as through FAI's public Facebook group (https://www.facebook.com/groups/885290875293805/) which is super helpful for getting the scoop from families-- good and bad.

The family that introduced us to TIP had struggled with OIT. Fwiw TIP claims 99% success rate versus OIT's ~80%, but I understand this is the very contention point being discussed here. FAI does report TIP statistics (https://public.domo.com/embed/pages/X6NX5). Anecdotally from my 6 years as an (adult) patient at FAI, the "99% success rate" seems entirely plausible to me; it is very rare to hear of complications -- for example almost nobody on the internet makes posts about negative TIP reactions because everyones experience is indeed overwhelmingly positive.

However, none of this dismisses it's a huge bummer FAI isn't getting TIP clinically proven right now -- it'd be a much easier sell to prospective families than needing them to chat with other parents on Facebook about how really legit it is.

Deciding to not trust TIP is also totally fair. Everyones journey with food allergies are different. Completing TIP also takes an extraordinary amount of personal sacrifice too (I for one took a gap year away from school to finish). But as another food-allergic who's scientifically minded and initially thought "where's the research to back this up" too before enlisting, I feel almost obligated to share my story.