Personally, I have received great benefit in years past from well-arranged patient-centric A.W.A.K.E. meetings that had participation from local DMEs, local sleep doctors, and respected industry researchers who were very generous with their time. So I applaud the A.W.A.K.E. concept; it works well when high-quality people are motivated to make it work. I credit the ASAA for all they have put into that arrangement for local groups of patients.
My accusations that the ASAA are in the pocket of the manufacturers relates somewhat to what I consider to be the views of many primary care providers. PAP therapy is not a surgery or a drug, so it isn't exactly welcomed with open arms by many physicians who still (somewhat wrongly) often assume CPAP treatment is just something nonmedical that is being pushed onto patients by a sleep industry that is only out to sell machines.
But the thing is, if the manufacturers hadn't been smart enough to get some influential sleep docs motivated monetarily early on, PAP therapy wouldn't be where it is today--it would have been stillborn back in the 80s. Money makes all worlds go round, and the medical world is no exception. Medicine cannot be practiced in a vacuum--the manufacturers, docs, researchers, payers, and politicians all have to be on board, on the same page, and headed in a unified direction, or else we as patients won't get the help we need.
Equipment people benefit, of course, from the acceptance and popularity of the equipment. That puts the interests of the makers of our beloved machines and our interests in much the same place, in some ways. So for me, the ASAA are worthy of being embraced as partners in what we do as patient advocates, just without considering the ASAA truly direct representatives of our interests as users. That isn't a lack of trust; it is keeping our eyes open with full knowledge of where the funding comes from. If we can help the ASAA more directly grasp our needs, that informs how they advance the interests of the manufacturers, which can in turn, benefit us. We're all back-scratchers in this arena.
The ASAA are not the bad guys, even if they do move in the same circles as some of the less-than-patient-centric manufacturers who, by bylaw, are required to put their investors ahead of us. The primary customers of the manufacturers are the DMEs, after all, not us. We may be the end users, but we are NOT the primary customers. And it is important, I think, that we remember that as a meaningful reason that manufacturers have to put the DMEs ahead of us with pricing considerations, for example. Especially so with ResMed, I feel, who although they make great machines and put out a lot of great material, can still be virtually predatory in the treatment of patients who buy products online from the likes of this forum's sponsor.
That is my stance on the ASAA and their primary supporters (the manufacturers) in a nutshell, for whatever that is or isn't worth. I am by no means an expert on any of that, so I'm often wrong, even though that rarely keeps me from arguing loudly when I decide to do so. I mean, hey, this
is the Internet, right?!