XPAP Users Association - Should we start one?

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?

Definitely yes! We need some kind of patient advocacy group.

Isn't that what cpaptalk.com is? That's why I joined!

DreamDiver wrote: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?

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. The biggest problem I envisioned was being able to get information to the prospective users BEFORE they needed it (before they got sucked into the existing system). We already know that the manufacturers read this forum from time to time. Johnny's product challenges are a good drawing card to get them here.
If users are finding their way here, they're getting help and the benefits of additional knowledge about their therapy. It's the people who may never find their way here or give up on their therapy that NEED help. The corporate moguls are only interested in making money (in my opinion).


Den

I'd be all for it if it gave us a loud voice with the DMEs, Doctors, Insurance, Equipment Mfrs, and if we could really educate the medical communiity about the dangers of OSA and proper use of the equipment, settings,etc. Then we could just use this forum for friendship, support, reporting all our successes, and general questions and tips. That'll be the day!

OOPS, look what the Easter Bunny brought me. I see my darling teenage granddaughters were having fun with Grammy's computer yesterday and here they are in a photo from last summer! BTW, they did ask for permission to use it to check their emails, but first wanted me to show them this board that helps their Grandpa so much. Little did I know!

Wulfman wrote: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. The biggest problem I envisioned was being able to get information to the prospective users BEFORE they needed it (before they got sucked into the existing system). We already know that the manufacturers read this forum from time to time. Johnny's product challenges are a good drawing card to get them here.
If users are finding their way here, they're getting help and the benefits of additional knowledge about their therapy. It's the people who may never find their way here or give up on their therapy that NEED help. The corporate moguls are only interested in making money (in my opinion).


Den

Hi, Den. I agree with you, with one caveat. Yes, new patients need education about the system BEFORE they're caught up in it. But I started researching my diagnosis immediately upon receiving it, and I'm still having a hard time getting a data-capable machine (which I think EVERY xPAP patient should have) 17 months later, so advocacy is an important thing.

Additional knowledge from sources such as this forum is terrific, but it doesn't help us in the real world when we have to fight for our therapy needs. KNOWING how to fight the system is advantageous; actually being ABLE to fight the system is another thing altogether. As individuals, it's a David and Goliath situation, and the challenge can be exhausting to the little guy.

It's not just those who don't find this forum (and/or others like it) who need help in this regard. It's also people like me, who have some knowledge about how to get what I need and are being met with brick walls at every turn. Perhaps we'd need to "lobby" in a political way, rather than appeal to the corporations and manufacturers who are simply in it for the money?

Just my thoughts...

I think anything to help educate doctors and DMEs would be a big help as I am finding out. They don't have all the answers and it's the ones that use the equipment every night (patients) that really benefits from doctors and DMEs being better educated on sleep disorders.

You are soooooo RIGHT, TVMangum, as to who REALLY needs the education when you point out the DMEs and doctors!!!!

At least patients who need AND WANT the education will find their way to this or other apnea support forums and GET THEIR education. WHO is going to educate the doctors and DMEs to the patient's role as the END USER and thus the ones who best know what is needed.

My only question is, Would Carbonman be the president or the sergeant at arms?

Den,

Your observations are always excellent. I agree that at first, our efforts might fall on deaf corporate ears. I wouldn't start with community stakeholders. There are four general stakeholders in this community: The health industry, the suppliers, the makers and the end users. The only stakeholders without any real representation are the end-users. We need this. Maybe it wasn't the right time a few years ago. Maybe it is now.

The first place to start is research. Nail down what we know. Follow the money. Chart and graph everything. Look at it from all perspectives. Then publish what we find.

A strong web presence and good press releases, coupled with a few people nationwide who are well-spoken and well-briefed and on our agree-upon issues in a united front could do a world of good. Endorsement by various health organizations couldn't hurt. Someone could work on that. Some of us could put together short articles for TV guide, Reader's Digest and other commonly-available easily-accessed popular magazines. The ultimate goal is to get on Oprah, The Diane Rehm Show, Tavis Smiley or the View, or any combination of similar shows. Once you have their attention, the concern becomes mainstream. Once it's mainstream, it's hard for corporations to ignore our presence any longer. We become the defacto end-user stakeholder respresentative and they have to communicate with us.

I don't think we have to go as far as Michael Moore or Morgan Spurlock - though it might not hurt. I just think we need research and a place to collect, collate and assemble our findings for the public. We need an organized and agreed-upon front with which to approach the health community, distributors, makers and other end-users, with goal of serving most crucially - the end-users. Surely there are plenty of us out there who have some left-over energy and would be willing to spend a little time finding out more about what could be better with the current snapshot of the xpap industry.

For my part, it's not enough to know that industry leaders are reading this forum. Nothing will change for them unless it positively affects their stockholders' pocketbooks. It's in one ear and out the other. Maybe it's time to unite and make ourselves heard. I'm not talking about a patients' bill of rights. I'm talking about ethical business practices. Better insurance practices. White papers explaining to insurance companies why it's cheaper for them to send people home with an auto. A white paper explaining to the health community a better system for prescriptions that emulates the same methods used for those with diabetes. White papers explaining how the current stakeholders are intertwined and what could be fixed. Publish brief summaries and make everything easily available.

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.

What do you think? Is it time?

Wulfman wrote: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. The biggest problem I envisioned was being able to get information to the prospective users BEFORE they needed it (before they got sucked into the existing system). We already know that the manufacturers read this forum from time to time. Johnny's product challenges are a good drawing card to get them here.
If users are finding their way here, they're getting help and the benefits of additional knowledge about their therapy. It's the people who may never find their way here or give up on their therapy that NEED help. The corporate moguls are only interested in making money (in my opinion).

Den

DreamDiver wrote:What do you think? Is it time?

Don't know.
Far be it for me to stand in your way......
I'm not against it, I just think some of the obstacles could be insurmountable.
If you think you can make some headway, go for it!

Den

The American Sleep Apnea Association appears to up and running with sponsorship by the manufacturers and offices in Washington DC. http://www.sleepapnea.org/index.html

I don't know what another organization can do that they cannot.

OldLincoln wrote:The American Sleep Apnea Association appears to up and running with sponsorship by the manufacturers and offices in Washington DC. http://www.sleepapnea.org/index.html

I don't know what another organization can do that they cannot.

OldLincoln,

If I understand the idea DreamDiver is floating, it is to have an association that represents the patients instead of one to represent the manufacturers, since their interests may not always be the same.

viewtopic/t41025/viewtopic.php?f=1&t=37 ... 32#p322532

jeff

I had the same thought when I first started reading on this forum about all of the problems that people have getting the right diagnosis, equipment and treatment. I too experienced a total lack of professional help from doctors, sleep centers and DMEs. I was more thinking of a Sleep Apnea organization so as to not preclude alternatives to XPAP when they show real potential.

I suppose that the American Sleep Apnea Association (ASAA) should be just that kind of organization but it appears that they are sponsored by the major players in the CPAP game. I would doubt that they would be an unbiased advocate for patients.

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. Some might actually listen.

I truly believe that apnea diagnosis and treatment are oversimplified in the minds of those that treat it:
- Apnea causes the patient to stop breathing. Go to a sleep study. Get titrated to the point where the apneas stop. Get a CPAP set to that pressure. Cured!

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. And that the treatment is far from being as easy as popping a pill once a day. We should pull out our charts and show them to anyone who will listen - especially our docs. We need to point out that this really is a big deal!

On the lighter side, I also think we need our own bumper stickers. What would yours say?
- "Honk twice when the light turns green. Driver has OSA."
- "Don't make criminals out of self-titrators."
- "Rested Gal for President."

Those are my stray thoughts.

-Clark