Why no manufacturers input?

[tomjax]

Maybe I am not looking in the right places, but beyond a cursory product information at their sites, there seems to be very little user- manufacturer dialog.

And where is Perry?

We have many questions that get differing answers, some good, some not so good.

Just what is their attitude to patients monitoring their own data?
Are they just being careful in trying to not upset the docs and dmes?

And what do the docs and DMEs think of users monitoring their own data and discussing it?

And why do the docs not encourage this and incorporate it in their practices?
They seem, from what I read, to not have anything good to say about it.
Is the autopap monitoring movement gaining momentum and how will this affect sleep studies, especially the pressure determining sleep study.
IMHO, apap titration is far superior to sleep lab studies. Not in diagnosing, but in determining pressure.
Any thoughts?

[Mile High Sleeper]

Effect of APAP on titration study: I finally had a titration sleep study, 2 1/2 months after starting APAP. (I failed it! Did not sleep.) The sleep doc who writes the report on the sleep study says I'm the first person he's had who has been on APAP and asked for a titration study. When he asked why I had the study, I said it was because my PCP (primary care physician) and another doc (and finally me) thought I needed it. They are used to patients having "a number."

Since my PCP (a great doc) really doesn't understand the equipment intricacies of xPAP and the DME is on the verge of imcompetent, I'm the only one who has been managing my sleep therapy. The sleep doc said I've done a good job. Since I had zero knowledge of any of this, it's thanks to you all on this forum that I've been able to manage my therapy. I'm still looking for a sleep doc as a backup if there are problems we can't handle. I could use help in finding the best APAP settings. The local sleep doc is scheduling appointments a full 3 months out - a long time to wait for problem solving. I'm beginning to believe members of this forum who say that docs don't understand sleep therapy. My PCP is supportive of my managing my sleep therapy. But a sleep doc and/or a helpful, informed DME are the missing links.

There needs to be a better way. What about all the xPAP people who don't know about this forum and/or can't manage their own therapy?

[Wulfman]

Tom,

From the way you worded your questions, I think you already know the answers.....
(except for "Where is Perry?")

Personally, I think it would be interesting to hear from either John or Johnny Goodman on these subjects. Since they're providing this forum, are they getting any "flak" from the manufacturers or others? (Johnny, if you're reading this.....inquiring minds want to know.)
It's obvious that these forums are filling a void of information that is being left by the other entities you mentioned.....and probably for obvious (read that "monetary") reasons.

It's in OUR best interests that we succeed.....but does anybody else care?

Why don't you pose some of those questions to the manufacturers? It would be interesting to see if you get responses.

Best wishes,

Den

[Guest]

#1. You are not the customer that the manufacturers are focused on. Your choice to buy one brand over another is nearly meaningless compared to these two:

http://finance.yahoo.com/q?s=AHG 1 Billion+ Market Cap

http://finance.yahoo.com/q?s=LNCR 4 Billion+ Market Cap

If you can close a billion dollar deal with a huge company that'll put your low end equipment out to 98% of CPAP users or be thought well of by a few hundred hardcore CPAP users on an internet chat board, which would you choose?

#2. Even so, the fact that this equipment is billed at thousands of dollars but costs only hundreds online is making insurance companies wonder why they do drastically reduce reimbursement rates. While this completely ignores the fact that the reason the rates are high to begin with IS the insurance companies and their dishonest reimbursement policies, the manufacturers hate it, because again, 98% of what gets put out is DME. If those rates take a hit, the US market does.

Pages like this:

https://www.cpap.com/productpage/resmed ... p-h3i.html

restricting the selling of products to people outside the US, are just the start. Manufacturers want prices up to keep their DMEs stable and that means killing or tightly controlling the internet dealers. They have the power to do it. You do not have the power to stop it, or even slow it down.

The internet is in trouble. You are in trouble.

Evil DME

[NightHawkeye]

Manufacturers want prices up to keep their DMEs stable and that means killing or tightly controlling the internet dealers. They have the power to do it. You do not have the power to stop it, or even slow it down.

You raise good points guest, but you miss a critical point or two as well. The manufacturers are very much in competition with each other and that means that they very much like test markets. Can you think of a better place to get immense amounts of feedback than a place like this forum.

Have you checked recently to see just how many dealers are actively selling xPAP equipment on-line? They must be finding a market. I suspect that cpap.com is a fast growing business (but have no inside info).

The internet is in trouble. You are in trouble.

The pharmaceuticals industry tried intensely for years, with their staunch ally the FDA, to shut down the food supplements industry, but as near as I can tell, the supplements businesses are bigger and healthier than they have ever been. (I suspect also that their size long ago surpassed critical mass and there is simply no way that the flailing pharmaceuticals have any hope now of shutting them down.)

Being the staunch free market advocate I am, I could cite numerous other examples of similar monopolies, from airlines to software companies (can you say M$?), to consumer electronics companies that have faltered when they have attempted to control their market places using strong arm tactics. I see free market forces as immense. The internet is doing quite well right now, and I doubt that is gonna change in the near future.

Regards,
Bill