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Profile IconBLev and bruce david joined SleepGuide
Aug 21
The comment period is over, and the attached represents the revised version, based on your feedback so far. The original, along with the context surrounding it, is set forth in this article. Given the growth of the community over the past month, and the addition of many knowledgeable members who will probably want to weigh in on the PAPer Bill of Rights, I am recirculating this for your comment and feedback. If you think this is a bad idea in general, and not something we should pursue at all, please feel free to say so. But if you think we should go forward with publicizing this, even if only after substantial revision to this latest draft, please say that, too.


PAPer Bill of Rights

Article I
The objective of physicians and clinicians should be more than to get their patients to use positive airway pressure devices; it should be to strive for the devices to be used properly so that the patient achieves an optimal AHI and a leak rate within manufacturers' established ranges for the mask being used

Article II
All new machines developed by manufacturers should (i) be data-capable so that patients have some objective measure of their treatment's success; (ii) be equipped with an adjustable and integrated heated humidifier; (iii) include wireless technology capable of transmitting detailed efficacy data to patients at their option

Article III
Positive airway pressure devices should not require a doctor's prescription unless a patient has a history of other respiratory problems or health conditions that would make use of a positive airway pressure device dangerous.

Article IV
A user must not have to settle for a mask until it is both comfortable and effective for that user, and should be permitted to switch up masks at the sole expense of the manufacturer up to a certain number of masks per year; old masks should be recovered by the manufacturer as a hedge against fraud, and distributed to needy individuals/families

Article V
Physicians should inform patients of the existence of out-of-pocket "comfort" features and accessories such as auto-adjusting machines; fleece sleeves for hoses and tubing; etc.

Article VI
Insurers and Medicare should inform patients of the need to replace masks, tubing, mask cushions and other equipment, and the fact that they will pay for the parts to be replaced, and on what schedule they will do so

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Comment by Judy on February 3, 2009 at 12:46am
My BIG BEEF is w/those doctors who pawn themselves off as "leep specialists". Pure and simple. Moreso than w/the local DME suppliers altho they receive most of the complaints and "guff" in the various apnea support forums.

Does anyone KNOW who educates and instructs diabetics in monitoring their diabetics?

What's w/these so called "sleep specialists" that they treat their clients as less intelligent and capable of montoring their CPAP therapy than a diabetic monitoring their disease?

What's w/these so called "sleep specialists" who can't be bothered even consulting w/patients who are Dx'd w/OSA and just send their dictated results off to the referring physician expecting them to do the consultation and explanation of those results?
Comment by Daniel on February 2, 2009 at 10:13pm
While the idea was noble, I am relieved that this won't proceed as a "Bill of Rights" If a final draft serves as the "Founding Principles of SleepGuide," I'd probably be a lot more comfortable with it.
Comment by Banyon on February 2, 2009 at 10:01pm
Core beliefs for me:

1. PAPers are personably responsible for their own education and treatment.

2. Doctors, sleep labs and DMEs are responsible under current federal and state laws and licensing requirements. Otherwise they are free to practice as they see best fit.

3. Manufacturers are also responsible under current federal and state laws and otherwise free to conduct business as they see fit. I am not familiar with FDA requirements for new product approval. The process needs to be reviewed and possibly revised to promote product and process development.

Regarding point 1, I believe there are many people who are eager to help on a volunteer basis with education.

Regarding points 2 and 3, we must keep open venues for the public to share information about the profession. Organizations which are highly effective and efficient will thrive and ones which aren't will change or go out of business.

Keep the communication open; stress education and involvement; have minimal government involvement to protect patients from fraud and enforce existing regulations; personal responsibility; show your love for your neighbor by helping him.
Regards,
Comment by The SleepGuide Crew on February 2, 2009 at 9:05pm
Fair enough. I share your passion for education/enlightenment about this common, but misunderstood disorder. And the last thing I'd want is for this to be construed/used to limit options for patients. So I'm tending to back away from a legislative agenda, and gravitate more toward an articulation of what we as a community of sleep apneics who give a damn want from our health care providers/insurers, etc. If nothing else, it can serve as a guide to newbies who know nothing about how screwed up things can get trying to get treatment. We can serve it up in the new users group or elsewhere that they're likely to look. So all that being said, and putting the prospect of government regulation aside, the question is whether we can agree on some core principles/beliefs?
Comment by Banyon on February 2, 2009 at 8:50pm
"Comment by Mike 7 hours ago
in principle, do people think it's a good idea to have a "bill of rights," or some such?"


Sorry Mike, but I don't think it is a good idea. Where do you intend to go with it? It sounds dangerously like something that could be written into government regulations someday. Regulations that would be onerous and static and tend to raise costs and stifle new product development.

I have a passion for educating people about the high prevalence and destructiveness of SDB. I also have a passion for seeing that newly diagnosed patients get educated up front before they make expensive investments in equipment. IMO, all newly diagnosed patients should be clearly aware that equipment and software are available that will allow them to monitor the effectiveness (or lack of effectiveness) of their treatment. They should also be aware that many of us never received good therapy with the settings from the sleep lab and only got effective therapy after monitoring at home and making adjustments with our own equipment. (No slight to the sleep labs is intended.)

I think the answer is web sites like sleepguide.com and others. Also we must spread the word to our friends, associates and neighbors. We must drop the tendency to "be quite" about this health challenge we have in order to help those we come into contact with. We should become involved in local support groups.

I support the principle you are promoting, but I don't support a "bill of rights".

Regards,
Comment by Mike on February 2, 2009 at 1:10pm
in principle, do people think it's a good idea to have a "bill of rights," or some such?
Comment by Henning on February 2, 2009 at 11:35am
I have completely overlooked this discussion. Although it may be targeted to the US. I will make my comments anyway.

Article 0
I miss a first point where the rights to treatment with xPAP are defined. Are we satisfied with that treatment as based is for AHI > 15?
When Sleep Apnea is defined as AHI > 5, IMO everyone who meets these criteria should be offered treatment with xPAP.

Article I
“an optimal AHI”

What is optimal AHI? I would suggest “an optimal treatment”.
And what is optimal treatment. With the words of Daniel, “Focus on how you feel during your waking hours”

Article II
“All new machines developed by manufacturers should”

I don't believe that we can influence manufacturers. They will always follow the supply demand.
So here I would suggest
"All new machines prescript by doctors should" or
"All new machines delivered by DME's should" or something like that.
If this were reality, I am sure that manufacturers would quickly realize this.

Article III
“For otherwise healthy patients, positive airway pressure devices should not require a doctor's prescription”

I assume that there still should be some kind of a sleep study before?
Maybe there should be mentioned some minimum criteria’s for this.

Henning
Comment by Daniel on February 2, 2009 at 4:27am
I believe that if you substitute the word "efficacy" for "compliance" in Judy's Article VII, there would be no need for the parenthetical statement.
Comment by The SleepGuide Crew on February 2, 2009 at 1:52am
Judy --- I agree 100%, and have modified the draft in response to your feedback.
Comment by Judy on February 1, 2009 at 11:14pm
"Article VII
Patients should be encouraged, but not required, to access their full, detailed compliance data (that is, compliance data the machine can record, but which is not provided on the machines’ display screens)"

Compliance data? Who needs it other than the DME supplier to get their insurance reimbursement? This entire Article needs to be revised.

"Article X
If a clinician is unwilling or unable to address a problem within the prescribed 48-hour period, a user who expresses an interest in adjusting his/her own machine should be permitted to do so
Share"

We don't need permission now to adjust our therapy settings. We just need to be innovated to find out HOW - and that information is quite freely available on the net. Why give anyone any ideas we don't want them to have? I don't need OR WANT their permission to alter my therapy sessions!!

Its late. I'm tired. Something else might jump out at me tomorrow, these were the two that screamed at me tonight.

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