CPAPtalk.com

D.H. wrote: ↑

Wed Apr 25, 2018 10:41 am

. . . profit motive is ever present. However, sometimes this just fills the void . . . rather than this being an overly aggressive move on the part of manufacturers.

Well, as Deep Upper Airway never actually said, "Follow the money."

It is the axiom that has yet ever to be proved untrue on either side of the double blinds.

Happy to answer and/or clarify any questions you all have in regards to our public livestream with live polling of the AWAKE Sleep Apnea Initiative on June 8, 2018 www.awakesleepapnea.org

Please register for in-person or from the comfort of your own couch to participate. We will be sharing the results of the survey at the meeting. We are looking for patients that represent all the different journeys we take to get control of our lifelong chronic syndrome that we have to manage. Both successes and failures.

Respectfully,

Adam Amdur
Chief Patient Officer
American Sleep Apnea Association
www.sleepapnea.org

Maybe a TED talk could be assembled from Pugsy's vast comments;
but only with her permission, of course.
(((Can a TED talk be text only?)))

Can do a podcast so it’s quiet in controlled sound room.

asleep@thewheel wrote: ↑

Thu Apr 26, 2018 11:05 am

Happy to answer and/or clarify any questions you all have in regards to our public livestream with live polling of the AWAKE Sleep Apnea Initiative on June 8, 2018

Will there be a recording of that available of that for later? Wednesdays are a bad day for me.

Yes the entire meeting and transcript w closed caption will be archived on www.awakesleepapnea.org

Survey will be open for 30 days after the meeting as well.

asleep@thewheel wrote: ↑

Thu Apr 26, 2018 11:05 am

Happy to answer and/or clarify any questions you all have in regards to our public livestream with live polling of the AWAKE Sleep Apnea Initiative on June 8, 2018 www.awakesleepapnea.org

As quoted in the first post here

there have been relatively few forums for individuals affected by sleep apnea to share their experiences, express their treatment needs, and be heard by individuals directly involved in research, development, and regulation of medical products (including medications, medical devices, and diagnostic tests).

You are obviously aware of this form, so the question is.

What are we? Chopped liver??

Many here, including me have found this forum much more useful than your manufacturer sponsors & sleep professionals.

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?!

I just took the survey. It's painless.

prodigyplace wrote: ↑

Thu Apr 26, 2018 2:23 pm

asleep@thewheel wrote: ↑

Thu Apr 26, 2018 11:05 am

Happy to answer and/or clarify any questions you all have in regards to our public livestream with live polling of the AWAKE Sleep Apnea Initiative on June 8, 2018 www.awakesleepapnea.org

As quoted in the first post here

there have been relatively few forums for individuals affected by sleep apnea to share their experiences, express their treatment needs, and be heard by individuals directly involved in research, development, and regulation of medical products (including medications, medical devices, and diagnostic tests).

You are obviously aware of this form, so the question is.

What are we? Chopped liver??

Many here, including me have found this forum much more useful than your manufacturer sponsors & sleep professionals.

The significant words are "relatively few"; clearly this forum falls into that category. The fact that a person from ASAA has joined this discussion shows they are aware of us and welcome us. The new initiative could be a start of something to benefit apnea patients in future. Seems like a good opportunity to speak up and ask for what we want to see. Look at the repeated threads here that contain some version of "if only such-and-such existed/was possible.". Here's an occasion where those thoughts can be expressed directly to industry, health, and government stakeholders. If they're in attendance, they're there to listen. Seems like a shame to whinge on about past experiences, but I'm still newish to apnea treatment, and, as a non-American, may not fully understand all the various frustrations arising from treatment, insurance, and political views involved in your system of promoting change.

What I do know is one rarely obtains desires without robust dialogue and a tolerance for the discomforts of the change process. Ease is never guaranteed along the way. Perseverance and patience must be exercised.

I'm looking forward to seeing what comes of the ASAA's efforts.

Jean

Thank you all and I truly feel your skepticism and frustration with the system. I started treatment 10 years ago and 5 years later I started helping on behalf of the asaa. It hasn’t been an easy road but as one of my mentors, John Walsh founder of the COPD foundation, used to say so eloquently “If you are at the table , that means you are not on the menu.” We as patients have been chopped liver for a long time. I find it funny that the impression is that we are in the manufacturers pockets. They consider us the Obstructive Sleep Apnea Association. They use us and we make use of them. Let’s remember on this site that we are having this discussion on makes a lot of money off of our CPAP REsupplies.

I invite you all to participate in the survey and in the meeting.

asleep@thewheel wrote: ↑

Thu Apr 26, 2018 11:05 am

Adam Amdur
Chief Patient Officer
American Sleep Apnea Association
www.sleepapnea.org

Adam,
What does your role entail, please?

Jean

Good quesiton. We are a 25 year old organization that was run by doctors into the ground until about 5 years ago. We are now a 5 year patient lead, patient centered, and patient governed advocacy association. We are not a trade association.

I am currently our de facto executive director until we find someone we believe in to carry our water.

Happy to discuss in more detail.

We should do a live chat on here if that’s something this community would like to do.

aa

asleep@thewheel wrote: ↑

Thu Apr 26, 2018 6:01 pm

. . . John Walsh . . . used to say . . . “If you are at the table , that means you are not on the menu.”

I have no, uh, bones to pick, with Mr. Walsh, but in my experience, whenever one is "invited to dinner" in an ambiguous way, one must ask for clarification in legally binding written form in order to clarify with certainty whether one's role will be as one who dines, as one who cooks, as one who serves, as one who is expected to clean up, or as one who will be dined upon.

And it IS possible to be invited to sit at the table while simultaneously being on the menu and dined upon. Happens all the time, Special Agent Starling.

asleep@thewheel wrote: ↑

Thu Apr 26, 2018 6:01 pm

. . . I find it funny that the impression is that we are in the manufacturers pockets. . . .

Rule number one of any organization is self-preservation, which means, in plain English, "let's not do anything that may lose us our funding." It is what it is.

asleep@thewheel wrote: ↑

Thu Apr 26, 2018 6:01 pm

. . . They use us and we make use of them. . . .

And which party has historically been the chopped liver, you say? [Insert another joke in "bad taste" here about liver, fava beans, and chianti.]

asleep@thewheel wrote: ↑

Thu Apr 26, 2018 6:01 pm

. . . Let’s remember on this site that we are having this discussion on makes a lot of money off of our CPAP REsupplies. . . .

The owners of this site place no ads here. And they do not discourage our direct criticism of them or anyone else they are in business with. This forum is provided for all to use, no strings attached. We, the users here, don't have to worry about the funding being pulled because of what we say. It's like the old days in broadcast TV when the newsroom was separate from the entertainment divisions to keep ad-buyers from influencing content.

Is it now the same with the ASAA? Does the ASAA now welcome direct criticisms of the manufacturers and now wish to provide an amplified way of publicizing those criticisms? If so, I applaud the ASAA for this new position.

Hey, I know! Let's test that new position out by taking on ResMed together. Publicly. Loudly. Let's get in their faces. Let's expose their little cartel that keeps me from buying a ResMed machine at a fair, purely market-driven, price from online sellers. Let's expose the hypocrisy of the position of a company that claims it is putting customers first when it actually protects the same DMEs that chop up the livers of the patients by lying instead of ResMed's allowing patients a way to get their products at a deep discount from online sellers.

I welcome any platform you can provide for taking that on. Do we have a deal? Wanna talk about it over, um, dinner?

They had a forum before. It was so heavily moderated that you couldn't say anything that did not comply with the industry mandates that "patients" were not to adjust their own settings, to know how to get into the clinical menu, etc. If you dared to post a link, even to something helpful and non-commercial, you could get banned.

No thanks. They can use the words "patient-focused" all they want, doesn't mean they care.