Food Allergy Support

Discussion Boards => Main Discussion Board => Topic started by: ajasfolks2 on May 24, 2012, 09:37:04 PM

Title: Getting into a study or challenge
Post by: ajasfolks2 on May 24, 2012, 09:37:04 PM
For those fortunate to live in areas where studies or challenges are offered . . .

thoughts? comments? suggestions?

how to "get into" these?

Is just being on a "guru's" patient roster enough?
~ ~ ~

Starting this thread because we (family) have found that being active duty military and/or TRICARE (the "insurance" we have) identifies us as "not optimal" for studies or challenges.


So . . . maybe that little "factoid" should not be divulged?

And it cannot be concealed if the attending physician lists "Tricare" as the insurance.






Just a thought.   

Or two.

Title: Re: Getting into a study or challenge
Post by: CMdeux on May 24, 2012, 11:18:29 PM
Well, we don't see anyone with big name recognition.

Still, he's Sinai-trained, and just as importantly, he's kept that ethos over his decade away from the 'big leagues' out here in the sticks.

In other words, I think it's mostly luck of the draw and finding a REALLY good allergist as much as anything else.

He's been pretty challenge-happy this past few years.   ;)  Actually, he's highly prudent and he's never been afraid of challenges; but he's no fool about them, either.  He's careful, but not completely risk-averse to the point of life restrictions which are not necessary. KWIM?

He is not in a position to participate in a study, however-- probably because he has too few patients who would be candidates (small market, basically).

He is very definitely of the same opinion as Sampson's group re: oral immunotherapy as being 'experimental' at this point in time.  It's NOT for everyone... and as of right now, docs don't really have any way of knowing who is not a candidate.  KWIM?

  I'm pretty sure that our doc sees quite a few medicare and OHCP kiddos, though-- so I seriously doubt that Tricare would scare someone like him away from y'all.  It's a bit of a drive, however.   ;)
Title: Re: Getting into a study or challenge
Post by: sbs on May 25, 2012, 05:42:56 AM
I don't know anything about military insurance.  Why are you identified as being "not optimal"?

What I do know is that we haven't been able to get a "real" IOFC (one was stopped before she was given any to ingest) for dd the last few years even though we were very assertive in requesting them from two different allergists.  They don't like the size of her skin pricks.

We will be seeing a 3rd allergist this year, so we'll see.  We may also get on a waiting list to see a guru.  After that, i think I'll just drop this (probably false) sliver of hope that there is an end to this allergy for us any time soon.
Title: Re: Getting into a study or challenge
Post by: GoingNuts on May 25, 2012, 06:13:39 AM
Quote from: sbs on May 25, 2012, 05:42:56 AM
I don't know anything about military insurance.  Why are you identified as being "not optimal"?



Not sure, but guessing it may have something to do with Tricare not reimbursing well.

Or possibly that it identifies you as someone who may be likely to move before the study is completed.
Title: Re: Getting into a study or challenge
Post by: booandbrimom on May 25, 2012, 08:54:30 AM
We just found the study we're in on-line and sent an email! Insurance wasn't relevant because all the expenses are picked up by the study. (There's even a little stipend for expenses.) The benchmarking study we did several years back was the same - they paid US.

It's the residency requirement that's hard. DH and I actually talked about one parent moving to one of the study areas for a year, but my son was not invested enough at the time and we didn't think the desensitization trials were the magic bullet. We're glad now we waited.

Title: Re: Getting into a study or challenge
Post by: hk on May 25, 2012, 12:59:16 PM
Our (non-big name) allergist told me about a study at Stanford.  I just had to drive there ate specific time with allergy test results and a note about dd's asthma (pediatrician indicating that study was okay).  We found out she got in two weeks later.  They ran out of funding less than two weeks before we were scheduled to start, but that's another story.  They have funding again, but we are not going to pursue it now.  Good luck!