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PAPer "Bill of Rights" --- Your Feedback Needed

DRAFT VERSION

Friends,

Today, we face an unacceptable situation with Sleep Apnea. Sleep Apnea is a chronic, serious disease that approximately 30 million Americans have, only 10% of whom have been diagnosed. Although the disease is completely treatable with the “gold standard” of positive airway pressure (“PAP”), of those who use PAP therapy, nearly half fail and go untreated. Untreated Sleep Apnea in turn fuels an epidemic of diabetes, heart disease, obesity, hypertension and other ailments that costs the American taxpayer billions of dollars.

The good news is that we can improve our situation dramatically if we call attention to a patient-focused agenda: poor patient compliance leads to a vicious circle of skepticism among physicians, patients and others that PAP treatment can be effective, so fewer people who need help are diagnosed and treated. The bad news is that the system is currently set up to put the interests of the large corporations and medical professionals over the interests of patients.

As we welcome in a new administration in Washington, we believe we patients have a rare window of opportunity to influence policy as it applies to Sleep Apnea. So we are pulling together a patient-focused agenda we’re calling the “PAPer Bill of Rights,” a draft of which is set forth below.

We ask that you do the following:

1. Give your feedback on the PAPer Bill of Rights during the "comment period," which starts today and ends on January 31, 2009. Just as important, send the following link to your friends and family so that they can give their feedback: http://www.sleepguide.com/profiles/blogs/paper-bill-of-rights-your

2. Look out for the final version on February 1, 2009. At that time, we will circulate the final version for your signature and for you to obtain the signature of your family and friends.

3. After the signatures have been obtained, we will dispatch the PAPer Bill of Rights to the heads of the American Academy of Sleep Medicine and the American Sleep Apnea Association, the President-elect and our congressional representatives, among other key policy makers so that they can act on our feedback when establishing the national agenda for Sleep Apnea.


Regards,
The SleepGuide.com Crew

PAPer Bill of Rights

Article I
Successful treatment with positive airway pressure ("PAP") for obstructive sleep apnea or adaptive servo-ventilation ("ASV") for central sleep apnea, needs to be redefined so that mere usage of the machine doesn't cut it (currently, a patient is "successfully complying" with PAP therapy if he/she is using the PAP machine >4 hours a night for 70% of nights)

Article II
Successful compliance means that yes, the machines are being used, but also that they are also being used properly so that the user achieves an AHI at or under 5 whenever possible, and a leak rate within manufacturers' established ranges for the masks they are using

Article III
Data-capable machines should be prescribed exclusively going forward so that users have some objective measure of their treatment's success

Article IV
Users should be provided with masks that are effective and comfortable for them, and should be allowed to switch up masks until these criteria are met

Article V
Upon being prescribed a device, users should be informed of the full range of features and accessories that can be brought to bear to make therapy more comfortable: the existence of heated humidifiers; auto-adjusting machines and other machines that provide comfort features, such as exhalation relief; and fleece sleeves for the 6' tubing near the face that adds comfort and also helps to prevent "rainout," among other “comfort features”

Article VI
To the extent Medicare or insurance will not cover a “comfort feature,” users should still be informed of them so that they have an opportunity to pay out of pocket if they so desire

Article VII
Upon being prescribed a device, users should be informed of the need to replace masks, tubing, mask cushions and other equipment, and should be told how often to clean and replace the equipment and the fact that most insurers will pay for the parts to be replaced on a regular basis.

Article VIII

Users of data-capable machines should have full, unfettered access to their detailed compliance data (that is, compliance data the machine can record, but which is not provided on the machines’ display screens)

Article IX
A doctor, respiratory therapist or other clinician should intervene within a 48 hour period of becoming aware of a problem, and work with the user on a mutually agreeable solution – because patients will have access to detailed compliance data, patients will be able to “flag” problems more easily and bring them to the attention of a clinician

Article X
If clinicians are unwilling or unable to address a problem within the prescribed 48-hour period, users should be provided with the information needed to make adjustments to their machines themselves if they desire to do so

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Comment by Judy on January 30, 2009 at 10:26pm
I hit the Submit botton too soon. All CPAPs should have to be fully data capable at least to the level of the Resmed S8 Elite.
Comment by Judy on January 30, 2009 at 10:24pm
EDUCATION IS THEY KEY! How are diabetics educated and trained to monitor and adjust their medication needs under medical supervision? Sleep doctors/labs should be legally required to have a "professional" on staff and available to educate and train their Dx'd patients and to assist w/any problems that arise. It should NOT be left up to the local DME suppliers to provide that education and treatment. CPAP patients are no less intelligent or disinterested in their CPAP therapy than a diabetic is in their diabetis management. Not if they are given half a chance to understand the hazards to their health w/o adequate therapy and they are encouraged and educated as diabetics are.
Comment by The SleepGuide Crew on January 30, 2009 at 9:49pm
Good point. Been reflecting on the next draft, timing, etc. I think what you propose makes sense --- I'll monkey with it to try to incorporate Banyon's criticisms and other feedback I've gotten, and push for a revised draft on Feb 1. As you say, it will only be version 2, and then we'll open it up for another comment period, which will have the other virtue of leveraging the feedback of our increased user base since this originally posted.
Comment by Daniel on January 30, 2009 at 9:44pm
Are you still on track for Feb 1? I've just read through the comments, and I agree with most of Banyon's points. If those comments are considered seriously, the document will be very different from the first draft. So different, in fact, that I don't think it would be right to consider it the final version, but rather Version 2. You should then have another comment period. I'm pretty sure the Bill of Rights wasn't finalized after one draft...
Comment by Mike on January 2, 2009 at 12:21pm
That's such great feedback, Rock. Thank you. People have either been loving this or hating this, and you're the exception in finding sort of a middle ground. I'm not wedded to it as is -- as I said, it's just a draft and I certainly don't know everything, so I'm gathering feedback so I can change it. I'm especially interested in what you said about the replacement parts and DMEs losing money somehow on it. If you would be comfortable doing so, please post a discussion on that topic. I think it merits some space of its own.
Comment by Rock Conner RRT on January 2, 2009 at 8:20am
Article I
Successful treatment with positive airway pressure ("PAP") for obstructive sleep apnea or adaptive servo-ventilation ("ASV") for central sleep apnea, needs to be redefined so that mere usage of the machine doesn't cut it (currently, a patient is "successfully complying" with PAP therapy if he/she is using the PAP machine >4 hours a night for 70% of nightsI'm concerned that too narrowly defining success will all but eliminate recognition of benefits. For example, if someone properly diagnosed with bipolar disorder takes his meds 70% as prescribed and is his behavior & quality of life is elevated, I wouldn't want him to be labeled as or be sanctioned for being noncompliant. Perhaps the 70%/4 hour standard isn't right for xPAP, but something less than 100% is surely appropriate.

Article II
Successful compliance means that yes, the machines are being used, but also that they are also being used properly so that the user achieves an AHI at or under 5 whenever possible, and a leak rate within manufacturers' established ranges for the masks they are using

Article III
Data-capable machines should be prescribed exclusively going forward so that users have some objective measure of their treatment's successMandating prescription of data capacity is only the beginning. It must be paid for by third parties or the prespcription is of little value.

Article IV
Users should be provided with masks that are effective and comfortable for them, and should be allowed to switch up masks until these criteria are metThe key manufacturers with whom I deal already make this available with a 30 day exchange program. Unfortunately, not all DME providers take advantage of this so their customers suffer.

Article V
Upon being prescribed a device, users should be informed of the full range of features and accessories that can be brought to bear to make therapy more comfortable: the existence of heated humidifiers; auto-adjusting machines and other machines that provide comfort features, such as exhalation relief; and fleece sleeves for the 6' tubing near the face that adds comfort and also helps to prevent "rainout," among other “comfort features”Generally I agree, though heated humidifiers should be included in every xPAP prescription.

Article VI
To the extent Medicare or insurance will not cover a “comfort feature,” users should still be informed of them so that they have an opportunity to pay out of pocket if they so desire

Article VII
Upon being prescribed a device, users should be informed of the need to replace masks, tubing, mask cushions and other equipment, and should be told how often to clean and replace the equipment and the fact that most insurers will pay for the parts to be replaced on a regular basis.Agreed. Some DME dealers have entered into third party payer agreements whereby the DME dealer loses money on each supply replenishment transaction, so they make no effort to contact patients for new supplies. The payer wins, the DME dealer wins, and the end user suffers. It ain't right.

Article VIII
Users of data-capable machines should have full, unfettered access to their detailed compliance data (that is, compliance data the machine can record, but which is not provided on the machines’ display screens)

Article IX
A doctor, respiratory therapist or other clinician should intervene within a 48 hour period of becoming aware of a problem, and work with the user on a mutually agreeable solution – because patients will have access to detailed compliance data, patients will be able to “flag” problems more easily and bring them to the attention of a clinicianThis would be great, but is unprecedented in our health care system for non-emergency situations. I'd love to have a system that serves at this level, but first I want a system that serves everyone, then we can work toward these loftier goals.

Article X
If clinicians are unwilling or unable to address a problem within the prescribed 48-hour period, users should be provided with the information needed to make adjustments to their machines themselves if they desire to do soI want patients to be able to adjust their own xPAP settings out of the box because they own the device, & we are talking about air pressure, not the dispensing of morphine or some other controlled substance.
Comment by sleepycarol on December 31, 2008 at 11:35pm
Article I
Successful treatment with positive airway pressure ("PAP") for obstructive sleep apnea or adaptive servo-ventilation ("ASV") for central sleep apnea, needs to be redefined so that mere usage of the machine doesn't cut it (currently, a patient is "successfully complying" with PAP therapy if he/she is using the PAP machine >4 hours a night for 70% of nights)
How do you propose to implement and monitor this? It would make a paperwork nightmare and increase the costs of treatment. EDUCATION is the key to successful use in my opinion and not mandates. Until the DMEs, doctors, RTs, and those providing the services are educated themselves on the equipment and treatment this will be nearly impossible to implement in my opinion.
Article II
Successful compliance means that yes, the machines are being used, but also that they are also being used properly so that the user achieves an AHI at or under 5 whenever possible, and a leak rate within manufacturers' established ranges for the masks they are using
Again who will monitor this and without the proper education will be hard to mandate.

Article III
Data-capable machines should be prescribed exclusively going forward so that users have some objective measure of their treatment's success
I agree that data capable machine should be prescribed and available software available to monitor therapy in the patients hands if desired. At a bare minimum access to the information should be made avalaible on the LCD screen.

Article IV
Users should be provided with masks that are effective and comfortable for them, and should be allowed to switch up masks until these criteria are met
Again who is responsible for this? Education is still the key in my opinion. The more educated the end user is the better the treatment they will receive. Price gouging should be discouraged and incentives given to hold costs down.
Article V
Upon being prescribed a device, users should be informed of the full range of features and accessories that can be brought to bear to make therapy more comfortable: the existence of heated humidifiers; auto-adjusting machines and other machines that provide comfort features, such as exhalation relief; and fleece sleeves for the 6' tubing near the face that adds comfort and also helps to prevent "rainout," among other “comfort features”

Again I don't think if there is a financial gain for the DME they are not interested in giving this info out. Every end user should be given pamphlets outlining various comfort features that are available -- who is responsible for this info -- not sure who should be responsible --
Article VI
To the extent Medicare or insurance will not cover a “comfort feature,” users should still be informed of them so that they have an opportunity to pay out of pocket if they so desire

Can be incorporated into the above article.
Article VII
Upon being prescribed a device, users should be informed of the need to replace masks, tubing, mask cushions and other equipment, and should be told how often to clean and replace the equipment and the fact that most insurers will pay for the parts to be replaced on a regular basis.
This should be easy to incorporate by just having a handout listing the guidelines.

Article VIII
Users of data-capable machines should have full, unfettered access to their detailed compliance data (that is, compliance data the machine can record, but which is not provided on the machines’ display screens)
End users should have access to the software to read their own data. Each end user should be responsible for their own treatment. Manufacturers should be responsible for allowing access to the detailed compliance.
Article IX
A doctor, respiratory therapist or other clinician should intervene within a 48 hour period of becoming aware of a problem, and work with the user on a mutually agreeable solution – because patients will have access to detailed compliance data, patients will be able to “flag” problems more easily and bring them to the attention of a clinician
Who is responsible for this mandate and who pays? It should be the end user that takes responsiblity for their treatment and seek the help of professionals to rectify the problems. These professionals should be EDUCATED to help the end user. I find that sadly many of the so called experts do NOT know how to help the end user as they (the professionals) are clueless.

Article X
If clinicians are unwilling or unable to address a problem within the prescribed 48-hour period, users should be provided with the information needed to make adjustments to their machines themselves if they desire to do so
Again education is the key in my opinion.
Comment by Mike on December 29, 2008 at 10:24pm
Article I
Banyon’s comments: So you make the requirements for “compliance” more strict? What happens is that insurance companies and Medicare will pay for fewer cpap machines! I believe this is very counterproductive to what you intend to do. For God’s sake delete Article I !!!

Mike’s comment: I intended this as a hurdle for the DMEs/doctors to overcome, not as some sort of back door way for insurance companies and Medicare to screw over patients. But let’s say you’re right and insurance companies and Medicare decide not to pay for machines unless they are being used to some therapeutic effect. That might be a good thing for our cause because the folks that aren’t serious will get out of the system, and there will be more resources available for those who are committed to treatment.

Article II
Banyon’s comments: Same as Article one. Please delete Article II !

Mike’s comment: See Article I

Article IV
Banyon’s comments: There are plenty of irresponsible (and worse) people who will take unfair advantage of this thereby driving up the cost for everyone. There must be a cost to the individual for trying more masks. Delete article IV !

Mike’s comment: good point. There needs to be some check on bad behavior. will need to integrate that.


Article VI
Banyon’s comments: OK. Should be incorporated with Article V.
Mike's comment: sounds good. thanks.

Article VIII
Banyon’s comments: How do you propose to do this? This could get very expensive. Do you realize how many people today don’t even know the name of the manufacturer of their cpap machine or mask? How many don’t even know their pressure setting? How many don’t have any interest in managing their cpap therapy? Do you think they will read charts of AI, HI, Leaks? Let’s not thow money away. Delete Article VIII.

Mike’s comment: This point is meant to propose a system where patients aren’t responsible for figuring out AHI from leak, etc., but merely given the tools to do so, should they be so inclined. My sense is that the industry bends over backwards these days to keep patients in the dark about this stuff. I had a hard time buying ResMed software in the US – I had to have it shipped in from Australia!

Article IX
Banyon’s comments: Do you realize this would be impossible to implement? Do you know how many people are irresponsible about their own therapy? This sounds like you want to force CPAP compliance on patients who are not determined to make it work. Delete Article IX.

Mike’s comment: See Article VIII --- we’re not forcing anything on patients. Just giving them access if they so choose. I disagree that it’s impossible to implement. ResTraxx permits wireless monitoring by clinicians of compliance data. That’s the direction we’re headed, my friend. That’s how it will be done.

Article X
Banyon’s comments: Users who are serious and determined about their CPAP therapy can find out today how to make adjustments. Now you will be extending this to users who are lackadaisical or worse about their therapy. Is it a good thing that these users, uneducated and undetermined about cpap therapy, will be willy nilly making changes to pressure settings for example? No! Delete Article X.

Mike’s comment: As you know, it is now illegal for patients to be told how to modify the settings on their machines, although it’s certainly not rocket science. Those that are uneducated, lackadaisical and undetermined will not attempt the adjustments, so I’m not too concerned. Those that are educated, enterprising and determined will no longer have to sneak around to make adjustments and will be told how to take control over their health. I think that's a good thing.

Banyon’s additional comments: I am very happy about sleepguide.com’s “evangelical approach” about diagnosing and treating sleep apnea. I support your efforts in this and on an individual basis I am also a “sleep apnea evangelist”. But let’s do things that will make things better not worse. Let’s do things that are effective and efficient.


Effective means people get diagnosed and people with sleep apnea get convenient treatment to the point sleep apnea has minimal negative impact on their physical and mental health. Efficient means we drive the cost of diagnosis and treatment down not up.

I look forward to offering support to your cause.

Mike’s comment: Although you’ve shot down most of my proposals, I appreciate all your thoughtful and comprehensive feedback, and welcome you with open arms to the debate. At the end of the day, I think we’re actually coming from a similar place and can reach some sort of compromise. In any case, I look forward to hearing from you more often, especially if you have something critical to say.
Comment by Banyon on December 29, 2008 at 9:40pm
Article I
Successful treatment with positive airway pressure ("PAP") for obstructive sleep apnea or adaptive servo-ventilation ("ASV") for central sleep apnea, needs to be redefined so that mere usage of the machine doesn't cut it (currently, a patient is "successfully complying" with PAP therapy if he/she is using the PAP machine >4 hours a night for 70% of nights)

Banyon’s comments: So you make the requirements for “compliance” more strict? What happens is that insurance companies and Medicare will pay for fewer cpap machines! I believe this is very counterproductive to what you intend to do. For God’s sake delete Article I !!!

Article II
Successful compliance means that yes, the machines are being used, but also that they are also being used properly so that the user achieves an AHI at or under 5 whenever possible, and a leak rate within manufacturers' established ranges for the masks they are using

Banyon’s comments: Same as Article one. Please delete Article II !

Article III
Data-capable machines should be prescribed exclusively going forward so that users have some objective measure of their treatment's success

Banyon’s comments: Good.

Article IV
Users should be provided with masks that are effective and comfortable for them, and should be allowed to switch up masks until these criteria are met

Banyon’s comments: There are plenty of irresponsible (and worse) people who will take unfair advantage of this thereby driving up the cost for everyone. There must be a cost to the individual for trying more masks. Delete article IV !

Article V
Upon being prescribed a device, users should be informed of the full range of features and accessories that can be brought to bear to make therapy more comfortable: the existence of heated humidifiers; auto-adjusting machines and other machines that provide comfort features, such as exhalation relief; and fleece sleeves for the 6' tubing near the face that adds comfort and also helps to prevent "rainout," among other “comfort features”

Banyon’s comments: OK.

Article VI
To the extent Medicare or insurance will not cover a “comfort feature,” users should still be informed of them so that they have an opportunity to pay out of pocket if they so desire

Banyon’s comments: OK. Should be incorporated with Article V.

Article VII
Upon being prescribed a device, users should be informed of the need to replace masks, tubing, mask cushions and other equipment, and should be told how often to clean and replace the equipment and the fact that most insurers will pay for the parts to be replaced on a regular basis.

Banyon’s comments: OK.

Article VIII
Users of data-capable machines should have full, unfettered access to their detailed compliance data (that is, compliance data the machine can record, but which is not provided on the machines’ display screens)

Banyon’s comments: How do you propose to do this? This could get very expensive. Do you realize how many people today don’t even know the name of the manufacturer of their cpap machine or mask? How many don’t even know their pressure setting? How many don’t have any interest in managing their cpap therapy? Do you think they will read charts of AI, HI, Leaks? Let’s not thow money away. Delete Article VIII.

Article IX
A doctor, respiratory therapist or other clinician should intervene within a 48 hour period of becoming aware of a problem, and work with the user on a mutually agreeable solution – because patients will have access to detailed compliance data, patients will be able to “flag” problems more easily and bring them to the attention of a clinician

Banyon’s comments: Do you realize this would be impossible to implement? Do you know how many people are irresponsible about their own therapy? This sounds like you want to force CPAP compliance on patients who are not determined to make it work. Delete Article IX.

Article X
If clinicians are unwilling or unable to address a problem within the prescribed 48-hour period, users should be provided with the information needed to make adjustments to their machines themselves if they desire to do so

Banyon’s comments: Users who are serious and determined about their CPAP therapy can find out today how to make adjustments. Now you will be extending this to users who are lackadaisical or worse about their therapy. Is it a good thing that these users, uneducated and undetermined about cpap therapy, will be willy nilly making changes to pressure settings for example? No! Delete Article X.


Banyon’s additional comments: I am very happy about sleepguide.com’s “evangelical approach” about diagnosing and treating sleep apnea. I support your efforts in this and on an individual basis I am also a “sleep apnea evangelist”. But let’s do things that will make things better not worse. Let’s do things that are effective and efficient.

Effective means people get diagnosed and people with sleep apnea get convenient treatment to the point sleep apnea has minimal negative impact on their physical and mental health. Efficient means we drive the cost of diagnosis and treatment down not up.

I look forward to offering support to your cause.

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