XPAP Users Association - Should we start one?

[johnnygoodman]

This forum does the best job I know of informing end-users how to take control of their machines and contend with other stakeholders forearmed with group knowledge and experience. We don't need to supplant or mimic that. I just wonder if would couldn't augment it.

Are there things I could do or ways I could bend CPAPtalk's software to better support CPAP user advocacy? If so, lets bolt it on and get to work.

Here are the obstacles I see:

1. Specific Goals. A CPAP user bill of rights is a good start but is too broad to be initially realistic. You've got to pick the big things and go after them.

2. Organization Structure. How does this organization fund itself? How much allegiance does it owe to its donors? How is this enforced? If by policy, who writes those policies and who can update or vote to change them? How flat is the organization and why? How are issues identified, worked on and resolved?

3. Social Leverage. CPAPtalk represents is far less than 1% of all CPAP users. No matter how loud we are in here, most of our industry has no idea we exist. This must change for any message we send to be effective.

4. Marketshare Leverage. Internet CPAP sales are less than 5% of all USA CPAP sales. CPAP.com is strong in this niche, but weak in sales relative to the big DMEs. We do know the players and the politics. We are also super strong in visibility and messaging ability, if that could be leveraged, we'd have something.

5. Social Club For CPAPers. When you see an OT picture entitled "My Kids In For Easter" you click it because you know and care about the person that posted it. This is the culture here and many (me included!) like it. I'm not against having a militant wing of CPAPtalk, but we should consider the effort it'd take to truly get people fired up and advocating for CPAP user friendly policies and how the super fired up people interact with your "standard" CPAPtalker.

6. Not Viral Enough. Want change? Put a weapon in my hands I can hit people with. Right now, I'm doing the best I can with this water gun. Not enough people buy CPAP stuff online, not enough get involved in social sleep websites. If you tick off CPAPtalk, what happens? Very little. Tell your friends, tell their friends, pile them in here. We must reach critical mass and only you can make it happen.

<plink, plink> My 2 cents.

Johnny

[Babette]

Hey Johnny, you'll appreciate this thought I had this weekend. After driving around the area a bunch this weekend, I looked at the umpteenth car with a custom back-window decal touting their business, weight loss method, whatever.

PWONG!!!

I'm seriously thinking of making myself a back-window decal that touts http://www.cpaptalk.com

"Got CPAP? Get REAL help, real answers, from real people:
http://www.cpaptalk.com"

Or something like that.

Waddya think?

For those who don't know how to buy your own custom back-window decal, see here:

http://www.decaljunky.com

http://www.tnl-ink.com/

http://webdecal.com/index.shtml

Or surf Google for others.

Cheers,
Barbara

[Babette]

BTW, Johnny, I'd buy a www.cpaptalk.com bumper sticker, if you wanted to have some printed up....

Cheers,
Babs

[jnk]

More ideas for bumper-stickers for Babette:

Ask me about cheap CPAP (cpaptalk.com)

The best CPAP is online (cpaptalk.com)

Full, nasal, or pillows? (cpaptalk.com)

Good sleep takes PRESSURE (cpaptalk.com)

Ask me my AHI (cpaptalk.com)

Let's SELF-TITRATE! (cpaptalk.com)

HONK if you HOSE! (cpaptalk.com)

At night I wear a MASK! (cpaptalk.com)

Hose up and DRIVE! (cpaptalk.com)

[Driver59]

I like the idea of representation for cpap users, sort of like AARP. My concern is that such an organization would need a full time staff that would need to have an office and an income. How do you begin to finance such a thing? If annual membership dues would support such an organization I would join in a second, but how to get this up and running is beyond the scope of my sleep deprived brain. Another issue that I have found even with people that I know that are on cpap is they don't want to take responsibility for their own therapy. Just go to the doctor and do what he tells you. I was the poster boy for cpap when I first got my machine and continue to be, but most people just don't want to hear it. I've turned everyone I know on to this forum and am the only one I know who comes here on a regular basis. I can't even get my brother, who desperately needs it, to have a sleep test done. Doesn't care much for the idea of sleeping with a mask strapped to his face every night, as if it would make him less of a man. I do believe though that public awareness is the way to start. People need to know that OSA is as common as diabetes and just as dangerous. If a national organization would accomplish this and get us treated better by the doctors and dme's and give us a resonable voice with the manufacturers, I'm all for it. By the way Babette, I love your idea about rear window decals and bumper stickers.
Don

[dsm]

Should we start an association?
Do you think there's a need for representation of machine users by machine users in order to get manufacturers, health insurance and health professionals to pay better attention to what patients and clients need? That's what this poll is about.

What do you think?

A group of us started down this path about 2-3 years back - registered a swag of cpap names, set up a web site.

But, we could *never* resolve who would fund it (had disagreement about how to charge members) and also we could never get
a constitution we could all agree to.

In the end it disappeared into the black hole of great ideas that fail when it comes to funding & who ends up having to to all the hard work vs those who say how the hard work needs to be done but don't do it themselves.

Now, if anyone is able to pull off such an org I will be in great admiration & full of praise.

DSM

[DreamDiver]

I hate to burst your bubble, but this idea was kicked around a few years ago.....a "CPAP Users Group"......complete with a "Bill of Rights".
It's a noble idea, but the objectives you mentioned would only fall on deaf ears at those corporate levels.

A group of us started down this path about 2-3 years back - registered a swag of cpap names, set up a web site.

But, we could *never* resolve who would fund it (had disagreement about how to charge members) and also we could never get
a constitution we could all agree to.

In the end it disappeared into the black hole of great ideas that fail when it comes to funding & who ends up having to to all the hard work vs those who say how the hard work needs to be done but don't do it themselves.

Are there things I could do or ways I could bend CPAPtalk's software to better support CPAP user advocacy? If so, lets bolt it on and get to work. ... Here are the obstacles I see:...

Thanks for these great responses. Have there been attempts to start a 501c3 non-profit organization? Can I see the website that was set up? What already exists that was created, and where was it left off?

[dsm]

The website is long gone (funding lasted a year). The url names were all let go after 2 years. We set up a non profit org in the US.
We had names like CUGI (Cpap Users Group International), we registered .org .com then added names that included the major brands
etc: etc: etc:

The core issues you face are

1) Getting a group together who will spend 100s of $s out of their own pockets for the org to get started
2) Agreeing on terms of reference / a manifesto etc:
3) Agreeing on a legal & auditable form of funding
4) Realizing that many people have tried this before & many of the more professional attempts are languishing

What becomes the brickwall is taking today's enthusiasm into tomorrow's world where your org just becomes another
one of many that has its moment of glory but that glory just doesn't last & the interest wanes & it dies. As mentioned
above funding is just one of the killers.

Cpaptalk has a working formula & that is because it is supported & funded by a very good business. People come
& go here, a few core members stay & play but the vast majority come, learn, get on top of their therapy then
move on.

DSM

[Babette]

I worked briefly for a nonprofit in the early 2000's. We quickly figured out that everytime someone got a bug up their butt, they would form an nonprofit organization, without researching whether that cause was already being worked on by another organization already. There were several orgs working on my employer's cause. I think my org was the oldest, but that didn't save my job when funding dropped. I got laid off with the rest.

I really do think folks need to RESEARCH before starting up yet another organization. As a fully satisfied member here, I don't need to be a member of any other sleep org. My funding dollars will continue to go to Johnny. Maybe I'll name cpap.com in my will.

Cheers,
B.

[DreamDiver]

I really do think folks need to RESEARCH before starting up yet another organization. As a fully satisfied member here, I don't need to be a member of any other sleep org. My funding dollars will continue to go to Johnny. Maybe I'll name cpap.com in my will.

So, maybe it shouldn't be about money. In fact, maybe it's better if it weren't. Maybe we don't need a name or strict organization at first. I do think there are more than enough smarts here to do research.

[roster]

........But instead of trying to create some kind of organization that will end up being a device to raise money and spend it on itself, I would urge everyone on this forum to become an advocate for Apnea sufferers. Take every opportunity to educate family, co-workers, even DMEs and providers. ..........
We need to fully explain the fact that the titration process is an unrealistic snapshot of a few hours of a person's sleep in an entirely unnatural environment. ........ We should pull out our charts and show them to anyone who will listen - especially our docs. ..............
Those are my stray thoughts.

-Clark

Sometimes stray thoughts are the best. Ditto what Clark said.

Remember from world history that 99.999% of the people who have set out to change the world have failed or made things worse.

You can let it be known in your neighborhood, at your office, and in your social circle that you are a knowlegeable experienced CPAP user. You can let it be know that anyone approaching a first visit with a sleep doc would do well to have a long discussion with you and spend some hours with cpaptalk.com.

I get some amazed questioning when I tell people that I have a machine/software that tells me how many times I stopped breathing and whether and when my mask leaked. And that is often from patients who have been using CPAP for years. People just don't know!

If I can get people in my home office before they go for a sleep study, I give them a little seminar and provide them with this documentation:

-Questions to ask about your PSG results
-Things to demand regarding your prescription
-Documentation on data-capable machines (Thanks RG!)
-Good internet resources for education
-Copies of two of my "daily detail reports" ->one day as the doctor prescribed it and one day after I tweaked it (very convincing argument for patient controlled at-home pressure tweaking!).

Collectivism is a dirty word for me. Individual to individual is the most effective and least dangerous.

You all know the story which ends with:

................................Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "I made a difference to that one!" http://www.bellaonline.com/articles/art8236.asp

Help one starfish. If later you get another chance, help another starfish.

This will snowball on its own.

[Babette]

Case in point - I wrote to two people I saw on Craigslist selling their Xpap setup, claiming they were quitting.

One wrote back. She wants more help. I sent her a lengthy reply, and encouraged her to join here.

Don't know if she will, but I tried to throw that starfish back. Not my fault if she swims for the beach on her own.

Cheers,
B.

[roster]

That's the way to do it Babette! Don't waste your time and effort on organizing. Just help one person at a time. Isn't that how it is done on cpaptalk.com?

[BleepingBeauty]

If I can get people in my home office before they go for a sleep study, I give them a little seminar and provide them with this documentation:

-Questions to ask about your PSG results
-Things to demand regarding your prescription
-Documentation on data-capable machines (Thanks RG!)
-Good internet resources for education
-Copies of two of my "daily detail reports" ->one day as the doctor prescribed it and one day after I tweaked it (very convincing argument for patient controlled at-home pressure tweaking!).

I wish I'd known you (or someone like you) when I was diagnosed. Like most, I was ignorant about OSA and its treatment, and I'm one of many who've fallen victim to a clueless PCP and an all-too-savvy DME (whose main concern seems to be their bottom line, rather than proper treatment).

To all of you who educate newbies personally, you're providing an invaluable service. Good on ya.

[jnk]

From Google's Quotes of the Day:

"If you don't know what to do, call the media and at least give the appearance of doing something."
- David Peterson

Before I make my choice in the poll, can I get clarification on whether beer is a "drug"?