myapnea dot org

[palerider]

The message is pretty clear. They will make glasses from an expired or bogus doctor's prescirption, no questions asked. That is not the same as not needing a doctor's prescription.

well, bless your heart.... I just said you were wrong about not being able to get a set of glasses without a current prescription.

and your trying to nit pick the fact, if you know your sphere, cylinder and axis are for each eye, you can write your own "prescription"... though I suppose you could call it "specs" at that point.

[Guest]

I invite you to come and lend your voice, your knowledge, your expertise, your experiences, and your passion so we can help others avoid going through the struggle we went through in the past or are currently dealing with. This site was a major influence in helping me learn to navigate my treatment. I learned a lot and also made plenty of mistakes after all we are human and sleep deprived.

Please sleep well,

Patient investigator
@sleepapneabook
Adam Amdur

I say from this...

Patients should always be an active participant in our own care if we are cognitively capable.
So yes monitoring data is what MyApnea Org is all about. changing pressure is technically considered illegal since under current law it requires a physicians oversight. However if that is where you want to see the dial change then MyApnea Org is the venue to make that happen. You are only preaching to the choir here. The FDA, CMS, AHRQ, ASPE, ONI, PCORI, NIH, etc are all in the room as partners. Let me assure you that this is a first. There are no guarantees for success.

it sounds as if nothing has or will change.

Buyer Beware.

[49er]

... changing pressure is technically considered illegal since under current law it requires a physicians oversight.

Could you cite where this is law?

Interesting that Sleep@atthewheel hasn't provided this information in spite of repeated requests by posters in this thread. That pretty much much says it all.

[asleep@thewheel]

I am a patient first and foremost. I am not an attorney therefore I am not qualified to recite code and law nor would I even know where to look. My comments were taken out of context. I was just trying to express what the sleep doctors POV is and how what they perceive to be right or wrong. Lets have a town hall or a google hangout to have these discussions out in the open so other audiences can learn of the issues inside of our disease state.

I wholeheartedly agree no one should be sent out the door with an APAP set between 4-20, that is just ludicrous and is a recipe for failure. We need a patient bill of rights. I look forward to the day when you can purchase a machine online or from a store without needing a prescription. I agree there is way more danger taking sleeping pills and/or drinking alcohol than forcing pressurized air down our throats. I am a patient. We don't have all of the answers.

The ASAA employs one full time employee. We are not in anyones pockets. We struggle to keep the lights on month to month. We are not the professionals who represent the doctors and the manufacturers. We are trying our best to reinvigorate the AWAKE network which has been neglected for a long time. We are getting machines into the hands of people who have no insurance or can't afford their high cost to entry via our Cpap Assistance Program. We are carefully and slowly updating our web site and forum as we have the means. Yes we were awarded money for myapnea.org. That money has to be spent on that project not on the ASAA by law. That money is also to be spent over 18 months if we meet our established milestones. We also are partners with a major hospital healthcare network that as we all know has a tremendous overhead. So lets not throw stones in glass houses. I am here posting under my real name which should be a welcome breath of fresh air, not an avatar.

The only way to change policy inside the current healthcare system is to prove to CMS what is best for their medicare patients. That sets the bar for the rest of the system. PCORnet is a gateway for that conversation.

I am not a politician or here to make friends. I am here to advocate for the early screening and team treatment for pediatrics to avoid the long term consequences that most of us have suffered with for a very long time.

I hope everyone has a chance to enjoy their #sleepinsunday.

[Sludge]

We have to live with this treatable disease and yes cureable disease if treated early in pediatrics.

Hah?

[Sludge]

I wholeheartedly agree no one should be sent out the door with an APAP set between 4-20, that is just ludicrous and is a recipe for failure.

Yeah well the Open Letter that you MFs pushed through in 2006 created this whole mess. There's no way you're gonna fix it now.

[Julie]

Yes - can you say more about OSA being curable in pediatrics please?

[49er]

I wholeheartedly agree no one should be sent out the door with an APAP set between 4-20, that is just ludicrous and is a recipe for failure.

Yeah well the Open Letter that you MFs pushed through in 2006 created this whole mess. There's no way you're gonna fix it now.

Can you say more about that Sludge? Do you have a link?

Thanks!

[squid13]

Thanks 49'er for asking that, I was going to ask that same thing, if Sludge would be kind enough to tell us about that letter.

[racprops]

“I am here posting under my real name which should be a welcome breath of fresh air, not an avatar.”

HUN I see you avatar and you posting name of “asleep@thewheel”

I do not or have not seen your real name…

I also see a suggestion that you want to test CHILDREN for sleep problems???

WOW that would make Sleep Doctors even more power full and make Billions more money…testing everyone for sleep problems…

“I am here to advocate for the early screening and team treatment for pediatrics to avoid the long term consequences that most of us have suffered with for a very long time.”

REALLY based on what evidence?? And at what age..16…8..5..??

Rich

[asleep@thewheel]

“I am here posting under my real name which should be a welcome breath of fresh air, not an avatar.”

HUN I see you avatar and you posting name of “asleep@thewheel”

I do not or have not seen your real name…

I also see a suggestion that you want to test CHILDREN for sleep problems???

WOW that would make Sleep Doctors even more power full and make Billions more money…testing everyone for sleep problems…

“I am here to advocate for the early screening and team treatment for pediatrics to avoid the long term consequences that most of us have suffered with for a very long time.”

REALLY based on what evidence?? And at what age..16…8..5..??

Rich

I have only been with the ASAA for 2 years as a volunteer. I am just as interested in any position paper that you all are referring to. from 8 years ago. I don't take responsibility for the past. I can only help guide our direction going from the present into the future. Our forum was run under different leadership than our board of directors. That is now changing. My name appears plenty at the beginning of this thread.

I want children to be SCREENED and then TREATED. I did not say in which matter. You assumed.

You ask about evidence. That is the whole point of MyApnea.Org. For once and for all to answer comparative effective research that looks for Patient reported outcomes that improve patients quality of life. It would also be really nice if all of the evidence that is out there was free and open to the public. Medical Publishing for the masses. We need to start with a baseline survey study and then carry that out over time asking the already validated questions but also asking new questions. We then can marry our data from our machines with so that at the end of the day we all have access to our EHR via the proverbial blue button technology. Your data is yours, that includes your sleep study. bidirectional communication.

Adam Amdur

[Guest]

What are your thoughts on this effort? myapnea org/ I'm not looking to upset anyone, just curious.

For the record - I guess the OP has just disappeared after posting this?

[palerider]

I am here posting under my real name which should be a welcome breath of fresh air, not an avatar.

I'd pay money (not much, admittedly) for a screenshot of your drivers license showing what state issued it to "asleep@thewheel".

is that one of those 'one name' things, or is your first name asleep, and last @thewheel? etc?

curious minds want to know!

[cnaumann]

. and your trying to nit pick the fact,

You are complaining about me nitpicking facts?

Anything is available without a prescription if you know where to look.

[Drowsy Dancer]

I am a patient first and foremost. I am not an attorney therefore I am not qualified to recite code and law nor would I even know where to look. My comments were taken out of context. I was just trying to express what the sleep doctors POV is and how what they perceive to be right or wrong.

In other words, you admit that you are unable to back up your assertion that is illegal.

The "sleep doctors" you cite are also not attorneys and also not "qualified to recite code and law." So why do you believe them and parrot their assertion? Why do you think they would know where to look? Having an M.D. does not, contrary to popular belief among physicians, make one omniscient.

I don't believe I took your remarks out of context at all.

Hugs and kisses,

DD
Attorney at Law