New Initiative from American Sleep Apnea Association

". . .the American Sleep Apnea Association (ASAA) is excited to announce the AWAKE Sleep Apnea initiative, an education and empowerment initiative that includes several opportunities for sleep apnea patients, family members, and caregivers to help inform researchers, regulators, and life science companies about what it’s like to live with sleep apnea. The AWAKE Sleep Apnea initiative is a collaboration of ASAA, numerous organizations, and the U.S. Food & Drug Administration (FDA). It’s the first-of-its-kind campaign to accelerate progress in patient-centered care and treatment of sleep apnea."

Includes: Patient-focused medical product development meeting (in person and by ?simultaneous? webcast); survey; information webinar; updates.

Details here: https://www.sleepapnea.org/you-have-a-s ... eep-apnea/

Jean

So how do we make sure Pugsy gets to speak there?

If you’re interested in potentially speaking on a panel at the meeting, please indicate that when prompted in the registration process.

Because they think that . . .

. . . 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).

So, what are we? chopped liver?

jnk... wrote: ↑

Wed Apr 25, 2018 9:55 am

So how do we make sure Pugsy gets to speak there?

If you’re interested in potentially speaking on a panel at the meeting, please indicate that when prompted in the registration process.

Because they think that . . .

. . . 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).

So, what are we? chopped liver?

And, unlike the ASAA, we serve the WORLD-WIDE Internet, not just the US portion of CPAPers.

jnk... wrote: ↑

Wed Apr 25, 2018 9:55 am

So how do we make sure Pugsy gets to speak there?

First, I think we need to figure out how she gets there, to speak--so to speak! (sorry, I'm a bit giddy today)

Pugsy, is this something you would consider participating in? Your experience and knowledge would be an asset to the discussions, I'm sure.

Jean

Maybe she could agree to wear a CPAP.com T-shirt and get a free ticket/room/Uber there?

(Pardon me for thinking outside the box. I'm usually the kind of guy who refuses to acknowledge that there even is a box.)

prodigyplace wrote: ↑

Wed Apr 25, 2018 10:00 am

And, unlike the ASAA, we serve the WORLD-WIDE Internet, not just the US portion of CPAPers.

Indeed. But we are a relatively loose band of users providing support to each other (and that is very valuable), whereas ASAA is an organized body with a mission to support patients and to lobby on their behalf. And while Pugsy would be a prime representative from the forum, that development meeting is open to anyone to participate. Field trip, anyone?

Jean

One needn't actually travel to attend the meeting; apparently it will be live-streamed, so one can join in from the comfort of one's own computer space. Still need to register, though.

Jean

Sorry. Not for me.
1....I absolutely hate any sort of public speaking.
2....My plate is already full
3....Even if numbers 1 and 2 weren't enough of a hurdle I simply can't get away from the house to travel much of anywhere that requires overnight. I have animals here at the house that rely on daily feeding and all that pets require....and I don't have anyone to come do that job for me.

Live streaming...that would involve number one.

That sort of stuff just isn't my cup of tea.

I tend to think of them more as "representing" mostly the manufacturers. But hey, just me.

https://www.sleepapnea.org/about/indust ... -the-asaa/

Pugsy wrote: ↑

Wed Apr 25, 2018 10:18 am

Sorry. Not for me.
1....I absolutely hate any sort of public speaking.
2....My plate is already full
3....Even if numbers 1 and 2 weren't enough of a hurdle I simply can't get away from the house to travel much of anywhere that requires overnight. I have animals here at the house that rely on daily feeding and all that pets require....and I don't have anyone to come do that job for me.

Live streaming...that would involve number one.

That sort of stuff just isn't my cup of tea.

You can listen only.

jnk... wrote: ↑

Wed Apr 25, 2018 10:22 am

I tend to think of them more as "representing" mostly the manufacturers. But hey, just me.

https://www.sleepapnea.org/about/indust ... -the-asaa/

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

D.H. wrote: ↑

Wed Apr 25, 2018 10:38 am

You can listen only.

See reason number 2.

And again this sort of stuff simply isn't my cup of tea. Not interested in having anything to do with it.
There are people who like this sort of stuff and being a part of it and there are people who want nothing to do with it.
Guess which group I am in.

D.H. wrote: ↑

Wed Apr 25, 2018 10:38 am

Pugsy wrote: ↑

Wed Apr 25, 2018 10:18 am

Sorry. Not for me.
1....I absolutely hate any sort of public speaking.
2....My plate is already full
3....Even if numbers 1 and 2 weren't enough of a hurdle I simply can't get away from the house to travel much of anywhere that requires overnight. I have animals here at the house that rely on daily feeding and all that pets require....and I don't have anyone to come do that job for me.

Live streaming...that would involve number one.

That sort of stuff just isn't my cup of tea.

You can listen only.

Why waste time on useless things, you tune in. Jim

I'm sure they can send you a transcript to line your wastebasket.

My concerns are the following:

1) Compliance. At least 50% of those to whom CPAP is prescribed end up not using it. I'd like that number to be much higher.
2) Awareness on the part of the public, especially employers. For instance, if an employee falls asleep at his/her desk, that employee should be sent for a sleep test, not reprimanded for having an "attitude" issue.
3) Greater awareness on the part of primary care physicians. psychiatrists, and psychologists, and hospital staff. For instance, there should be somebody walking around the hospital looking for observable sleep apnea.
4) Perhaps CPAP machines, hoses, and masks (real or mock-ups) should sometimes be placed on night tables in moves, TV shows, and in furniture ads and stores. This would help make CPAP accepted as more normative.

If they cover my expenses, I will be glad to give a one hour lecture to the assembly on the subject of The Anti-Patient Evils of Mandatory Minimum Online Pricing Policies.*

*Prudence dictates that part of my expenses be for covering the costs of an independent 24hr-security detail and housing in an undisclosed federal safehouse overnight following my lecture.