I have been discussing with my endo clinic my son going on Afrezza to blunt hormone peaks (so as to limit the deep lows we get after stacking, and also, of course, limit the peaks too).
It is a pediatrics diabetes clinic, so they are not familiar with the testing regimen for teens. I found a very generic set of spirometer info on the Mannkind site. Does anyone have access to other sources for the spirometry regimen that teens might need to undergo? I would love to be able to email my clinic with the full description of the MO they need to follow, so that it is an easy process for them (and therefore for us).
In particular, it would be useful for me to give them a reference showing expected numbers for teenage kids, as opposed to adults. It is apparent from the studies I read (such as this one) that there are different standards to interpret the FEV1 based on what is defined as normal. I can find discussions but so far no simple tables
Reference range for spirometry across all ages shows the need for different cutoffs for teens (and other ages) vs adults but does not give direct tables for such reference and cut-offs.
Just the FeV1 is all they look at. Should be able to do it at any cvs minute clinic. Unless they have obstructive pulmonary disease it’s really a non issue. It’s something that their competitors lobbyists rammed through…
To put it in perspective—- I did it with a respiratory therapist and she told me before I even blew in the tube, “I can already tell you have no deficiency because you’re not having any trouble speaking to me”. It’s a total crock don’t get bogged down in it… I don’t think the they even look at particular values it’s just to see if you can exhale a reasonable amount of air in 1 second, which unless you have major lung disease and dysfunction then you absolutely can… as long as it’s within reasonable ranges they don’t evaluate it further.
If your endos office isn’t equipped to do it (most aren’t, hence the competitions lobbying for this requirement) they can simply write an order for it to be done at the hospital or lab or wherever they refer out their testing too… it’s really not a big deal. The 1 literally stands for 1 second. Which is how long the fev1 takes.
I did an entire expensive and elaborate pulmonary function test and I’m pissed off about it to this day…
This appears to be a state-by-state thing Here is WI, I have not found a CVS pharmacy that offers it. One of them referred me to a CVS “Minute Clinic” which is a colocated thing. I just called the central number for them and there are telling me they don’t offer the FEV-1.
I am still looking for an easy (and cheap) place to go to for an FEV-1. I’ll post what in find in WI.
You could probably also stop by any 7th grade health class and they could take care of it for you
It is a total joke and the main purpose for the testing is to ensure that people’s lung function was not decreasing significantly over time as they took it with follow-up testing which has pretty well proven to not be a legitimate issue
Did you contact your primary ? After the fact, I found out my primary (internal med MD), could have done it in office.
Instead my endo put in order to the hospital to do it. The hospital gave me a full blown pulmonary test, and was billed a ridiculous amount. With help from my endo, who supported the fact that he ordered the simple test only, my billing was adjusted. I think it is uncommon for hospitals to get requests for the simple test.
For the next test, my endo had one in his office. I think he said the equipment only cost under $100. His staff was “trained”, but they still fumbled a bit when trying to do my follow-up. Results came back fine. Since then, I have not had another test. However I only use Afrezza 3-4 times a week, 4 unit doses, mostly for corrections or special meals.
I really want to be clear that this is not a legitimate concern for sound medicine. This is a big pharma dirty lobbying trick. After all I’ve read up on afrezza and having followed its entire development and approval and having reaped its benefits myself— if it were my son And I was up up all night ripping my hair out, a stupid fev1 wouldn’t even be on my radar.
That said, it’s not your job to educate your doctors on how to perform medical testing… they’re either willing to go off label and not give a damn about such things, or they’re not
EH had it done in his endo’s office by the Afrezza rep for our area. I am not sure if you’ll be looking for the same test or not, because I can’t remember the name. It took two minutes. It was a paper tube with a fan like object in it. Seriously minimal. I would contact MannKind and see if they have someone who comes to your area and could conduct the test and training on the drug.
Has Afrezza been approved for children (and I missed it), or do you just have an awesome endo? I have a friend here with a t1 child (pre-teen boy so about to hit puberty and all of its challenges), and she was really interested in what I had to say about my experiences so far using Afrezza.
Pediatric Trial
NCT02527265
Primary Objective: To assess the safety and tolerability of Afrezza in children ages 4 to 17 years with type 1 diabetes mellitus (T1DM).
Estimated Enrollment: 46
Actual Study Start Date: September 28, 2017
Estimated Study Completion Date: January 2021
Estimated Primary Completion Date: July 2020 (Final data collection date for primary outcome measure)
However, there are quite a few people starting to prescribe it off label, in particular in CA. My endo is aware of some of the CA endos prescribing it. So I am keeping my fingers crossed.
Nice try Michel. I am sorry they made that decision, but I also understand why they might. We are going to be trying the same thing in January. Will let you know how it goes.
Understandable, I’m not sure I would either if I were them unless the teen was wildly out of control without—- it’d be hard for them to justify going off label otherwise
I believe pediatric trials with afrezza are currently underway… I suspect it’ll be approved for kids before too much longer
Here is WI, I have not found a CVS pharmacy that offers it. One of them referred me to a CVS “Minute Clinic” which is a colocated thing. I just called the central number for them and there are telling me they don’t offer the FEV-1.