UNIVERSAL SLEEP APNEA PATIENT BILL OF RIGHTS

Can't we all get along?

I think let's just let it be that you agree to disagree .

We need clear concise suggestions to vote upon.

Submit your suggestions and remove the hostility. No one will listen when you are screaming at each other.

The cost difference between 'bricks' and their comparable full-data machines is almost negligible.
On our host's site, the S9 Autoset is $47 more than the Elite, which is $47 more than the bottom of the line Escape.
It should be a FELONY for a DME to demand an upcharge even one penny more than the actual difference between the
cost of the machines alone.
I strongly believe that service/education/setup fees should never be assessed unless the service was actually performed.
There should be strong penalties for LYING to an apnea patient about what equipment is available, and the cost--in advance.

asleep@thewheel wrote:Can't we all get along?

I think let's just let it be that you agree to disagree .

We need clear concise suggestions to vote upon.

Submit your suggestions and remove the hostility. No one will listen when you are screaming at each other.

Hi again No Longer Asleep at the Wheel!

I think what this thread has brought me to see is the need for us to make our own advocacy groups. Perhaps a large portion of what the "bill of rights" meeting should work on is that.

These are international problems and probably could use some international organization.

Well, I have an old high school friend who got himself elected to the state house of representitives at age 19 who might be able to help with that. And I think I will do this if no one else better able comes along.

Thanks for calling for peace, I regret getting so "soap boxy".

May the trip be a great time of productivity and fun for you!

Todzo

I am struggling with the bill of rights notion as well. With a universal approach the American way of doing things wether right or wrong doesn't go over as well. Not that the united nations has been a shining star in handling any world crisis or epidemics either.

Just trying to get people who are getting good sleep and therfore good oxygen to lay down some ground rules going forward so the PATIENT is the PRIORITY. Early detection is emphasized, education is taken to a higher level, the wizard behind the curtain is revealed, etc, etc , etc..

In view of the fact that FDA approval seems to be for sale to the highest bidder,
perhaps we Yanks need to take a look at international licensing procedures for medical devices.
Do they have more sense than us?

Thank you everyone for voicing your thoughts on what's best for the undiagnosed & diagnosed sleep apnea patients worldwide.

We are moving from a so called "Bill of Rights" to a "call to action for all sleep apnea patients worldwide."

I will post the articles when they are ready.

Thank you.

No longer asleep at the wheel.

asleep@thewheel wrote:Thank you everyone for voicing your thoughts on what's best for the undiagnosed & diagnosed sleep apnea patients worldwide.

We are moving from a so called "Bill of Rights" to a "call to action for all sleep apnea patients worldwide."

I will post the articles when they are ready.

Thank you.

No longer asleep at the wheel.

That is encouraging and sounds like something I can heartily support. Will be looking forward to notices of your progress!

The American Sleep Apnea Association will bring the voices of sleep apnea patients to the fore in a first-time-ever patient roundtable it is hosting at the Tenth World Conference on Sleep Apnea, to be held in Rome Aug. 27 through Sept. 1.

Meetings on health issues in the past have tended to give little or no attention to the needs, perspectives, and concerns of patients suffering from the diseases under discussion.

Patient participants in the roundtable, drawn from a variety of sleep apnea organizations around the world, will be challenged to formulate a patient’s bill of rights. That document will become a key part of an overall call to action that patient groups can subscribe to and help implement.

Two other items are also on the preliminary agenda:

Determining how best to pursue the World Health Organization’s goal of decreasing the frequency of noncommunicable diseases including sleep apnea by 25 percent by 2025.

Establishing a date for an annual World Sleep Apnea Awareness Day beginning in 2013.

Sleep apnea is a chronic, life-shortening, often unrecognized disease that afflicts hundreds of millions of people around the world. Left untreated it can lead to heart disease, type 2 diabetes, and cancer.
Edward Grandi
American Sleep Apnea Assn.
888-293-3650

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