Let's Get on the President-Elect's Agenda

[sleepguide]

Fellow CPAPers,

I'm convinced that we have a unique opportunity NOW to actually move the needle forward in Sleep Apnea awareness and get our concerns on the radar by impressing upon the incoming US administration how important this issue is to its overall health care agenda. I am planning to donate what I can to the American Sleep Apnea Association, which exerts some lobbying influence in Washington. I'd encourage you all to do the same, perhaps in the name of SnoreDog, or someone else you know who has suffered with this disorder. For your convenience, here is the link to the ASAA's donation page: http://sleepapnea.org/support/index.html. It's a not-for-profit so I think you'll get a tax deduction.

Warm regards,
Mike

[Captain_Midnight]

Poster Mike suggests that we ...

...move the needle forward in Sleep Apnea awareness and get our concerns on the radar by impressing upon the incoming US administration how important this issue is to its overall health care agenda. I am planning to donate what I can to the American Sleep Apnea Association, which exerts some lobbying influence...


While I believe that sleep apnea awareness is quite important, I would wonder if you might elaborate on what objectives that the ASAA lobbyists might have in influencing an upcoming overall health care agenda (an agenda that some might call a bit unstated at this point).

My worry is that somewhere, somehow, someone will want to refer to apneic patients as "disabled", which gets me more than a little upset. (If anyone wanted to call me "disabled" this 60-year-old OSA patient will challenge them to a 5-mile run followed by a game of concentration.)

If I had any influence on the health community regarding sleep apnea and its treatment, I would encourage informing new patients of the potential therapeutic advantages of patients using data-capable xPAP machines to monitor their treatment, and to use that information to modify their pressures and pressure ranges in order to optimize their therapy. Thus, the publication of guidelines for prudent patient modifications of therapeutic pressure might be a worthy objective in a health care agenda. This is 180 degrees opposite from what the ASAA preaches, BTW.

I like your intentions, my friend, and I salute your selflessness and willingness to participate in public health matters. In some issues, however, the ASAA has some awareness of its own to develop.

Kind regards - - Tom



.

[RosemaryB]

I heard Bill Clinton last year talk very knowledgably about sleep disorders. I suspect he has one. My guess is that it was detected after his heart attack, because that's when I heard him speak passionately about the need for good sound sleep. Perhaps Mr Clinton should talk with Mr. Obama and raise his awareness of these issues. You might want to contact Clinton.

I, too have found your organization's intentions to be good ones. However, the need to educate/enable patients to monitor their own treatment is something that I found to be lacking in your approach. If people are getting diagnosed but then not getting good treatment, we are spinning our wheels to some extent. Diabetics monitor all the time and it's much trickier and more dangerous.

I offer these criticisms with the greatest respect because I know your intentions are the best and I wish you well in your efforts.

[SleepyNoMore]

"Well said" Captain Midnight & RosemaryB...

I agree 100% with both of your view points.

And, as far as in the name of "Snoredog", that would be wonderful...

6ptStar/Jerry suffered a heart attack a couple of months ago but Thank "GOD", he survived his, then there was that football player, sorry I forgot his name, that skipped only one night without using his cpap machine and he had a heart attack and died .

"Snoredog was a "Legand in his own time" on this forum and his legacy will live on for many years to come, I will always refer back to his posts for help, so yes, my vote would be (if anything becomes of this) for, "In the Memory of Snoredog/John" and "All other's that have passed on from OSA".

There are lots & lots of things about OSA that need to be addressed!


SleepyNoMore

[sleepguide]

Guys, I wholeheartedly agree with all these sentiments. I have no affiliation with the ASAA -- just thought they might be the proper vehicle for representing our collective interests, which I am now learning is up for debate.

I totally agree that the rubber meets the road not at diagnosis, but in treatment. That said, I think pushing for patient modification of our own pressure settings is a bit radical of a departure point for moving proper sleep apnea treatment forward on the national health care agenda. I would start more with what Rested Gal proposed in a recent post:

"perhaps there should be legislation spelling out what DMEs have to do in the way of follow-up and actually helping people get real treatment from their machines.

If we're going to talk about suspending licenses, how about legislation to suspend the DME's business license for 30 days, if THEY can't prove -- via low leak and low AHI data downloaded from their customer's machines within 30 days -- that THEY are capable of really helping people use CPAP effectively. Bet they'd start downloading and studying the detailed data that first week.

Of course, to get those downloaded proofs, the DMEs would have to give out machines capable of generating that kind of data, wouldn't they? Not to mention, do a lot more to find the right mask and fit it right...."

Mike

[johnnygoodman]

Howdy All,

The donors to an organization set its agenda. Here are ASAA's key donors:

http://www.sleepapnea.org/donors/index.html

Do your interests align with these donors? If so, then send your money and hope for a change. Just be sure the change is the one you expect.

SleepGuide/Mike, someone has to speak truth to power. I think your heart is in the right place and I hope your blog grows. Be sure to do all the research before you stir the pot.

Also, to pre-empt the question, here's CPAPtalk's donor list:

CPAP.com

Johnny

[-SWS]

I am planning to donate what I can to the American Sleep Apnea Association, which exerts some lobbying influence in Washington.

I just searched the entire sleepanea.org site for the words "lobby" and "lobbying". I couldn't find out exactly what the political purpose or message content of the ASAA's lobbying efforts happens to be.

So does anybody know exactly what those ASAA lobbying dollars say in their attempt to persuade our politicians?

[sleepguide]

Understood, but if the American Sleep Apnea Association isn't the one to move forward a progressive, patient-focused political agenda, who will do it for us? Is there another organization better suited to the task? Would be happy to throw my support behind that organization.

Mike

[DreamStalker]

I am planning to donate what I can to the American Sleep Apnea Association, which exerts some lobbying influence in Washington.

I just searched the entire sleepanea.org site for the words "lobby" and "lobbying". I couldn't find out exactly what the political purpose or message content of the ASAA's lobbying efforts happens to be.

So does anybody know exactly what those ASAA lobbying dollars say in their attempt to persuade our politicians?

I think "lobbyist" is pretty much known as a bad word now ... I think bridge-loan (bailout) specialists is the current terminology.

[jnk]

From that organization's forum policies:

"Although the ASAA advocates being proactive in ones treatment, we can not advocate or encourage making pressure adjustments or other CPAP clinical adjustments without consulting with your physician. Please do not post instructions or how to guides for making adjustments or entering clinician menus to make adjustments.

. . . Q: I was told that I should stop linking to forum x or y, but I followed all the rules above, why?

A: If it appears that the majority of posts are intended not to inform but to direct forum members to a commercially sponsored forum, the posts will be interpreted as advertisement for the commercial site and will be moderated."

--http://apneasupport.org/about600.html

I find some sense of irony in being asked by a poster on this site to donate to an organization whose forum does not, as I understand it, allow anyone to be directed to this forum, or allow anyone over there to encourage anyone to make pressure adjustments for himself/herself.

I am not offended by it. I do understand it, I think. And I applaud what I assume to be the fine motives of the poster. But I find some irony in it nonetheless. And I am impressed by the kind responses being made in this thread. I like being here.

I cannot speak for Snoredog, no one can, but I have a feeling he'd box anyone's ears who made a donation in his name to any organization with a site with those policies, even if the policies do make sense for a non-profit organization funded by PAP equipment manufacturers.

That is only my personal opinion, which is what forums are (and should be) for. I thank CPAP.com for letting me post it here.

My donations to CPAP.com will be in the form of purchases.

jeff

[jnk]

Understood, but if the American Sleep Apnea Association isn't the one to move forward a progressive, patient-focused political agenda, who will do it for us? Is there another organization better suited to the task? Would be happy to throw my support behind that organization.

Mike

Mike,

I would not presume to tell anyone what to do politically. That isn't my realm at all. But giving pappers, 'the people,' a united voice is a tricky concept.

The manufacturers of the machines already have a voice. And in my opinion, many doctors discount what those organizations say and resent the fact that health-equipment manufacturers are speaking directly to patients with so-called education campaigns. It causes many doctors to discount the studies they read and the media stories about OSA. The doctors figure it is all just more propaganda from the manufacturers.

Similarly, the insurance companies, DMEs, and other parts of the present medical system already have their voice. Boy, do they!

Keeping this forum's discussions informative and helpful to patients is making a difference, though, because much-needed information is publicly available here that is, in turn, accessible from Google.com and other search engines when those subjects are searched. Combating the misinformation (disinformation?) being put out elsewhere is half the battle. Exposing the practices of the insurance companies, DMEs, and ill-informed doctors is important. But I am no activist. Just a patient.

Perhaps there are patient-advocacy groups out there that truly speak for the OSA patient. I don't know. But in my experience, this forum, cpaptalk.com, is the closest thing I've seen to that.

[sleepyangler]

No way in hades I would give a single penny to the ASAA! I only spent a brief time on their forum but it was long enough to realize that the site is far more aligned with the "sleep professionals" than those who suffer from OSA. There are a lot of good folks posting on the site's forum; there are a couple of site mods who believe they know it all, including what is best for those who need to deal with this affliction 24/7. Thanks but no thanks, as any donation I could possibly make would easily be buried by the contributions of those riding the current sleep apnea gravy train.

[RosemaryB]

I cannot speak for Snoredog, no one can, but I have a feeling he'd box anyone's ears who made a donation in his name to any organization with a site with those policies, even if the policies do make sense for a non-profit organization funded by PAP equipment manufacturers. . .
jeff

Yes, that thought crossed my mind, too!

[DreamStalker]

This is somewhat tangent to the thread but I just can't stop laughing ...

I lifted this from an article about Bush plans on the failing US auto industry.

He (Bush) revealed one other consideration — that Barack Obama will become president in just over a month.

"I thought about what it would be like for me to become president during this period. I believe that good policy is not to dump him a major catastrophe on his first day in office," Bush said.