PAPer "Bill of Rights"?

[Somnonaut]

As a 25+year seep tech, Director of a hospital based sleep lab, PAP user, and CPAP support group provider I think that PAPer Bill of Rights is a great idea. As to the person who wants nothing to do with Government controlling, blah, blah, blah, more conservo-crap speak for poor geoverning, then you do not have to enjoy the fruits of the PAPer Bill of Rights. And you can allow any company to make a profit off of you at your unwillingness to do anything about it. Have fun laying on the sofa.
I got very miffed while planning a trip to Denver two years ago for the big Sleep meeting. Jetblue would allow me to carry my unit on board, but would not allow me to use my CPAP during a red-eye flight. I was quite upset asking them, WHY they were keeping apneics from flying red-eyes? I still can't figure it out. I even offered to get a battery operated unit. But was told no.

[Wulfman]

As a 25+year seep tech, Director of a hospital based sleep lab, PAP user, and CPAP support group provider I think that PAPer Bill of Rights is a great idea. As to the person who wants nothing to do with Government controlling, blah, blah, blah, more conservo-crap speak for poor geoverning, then you do not have to enjoy the fruits of the PAPer Bill of Rights. And you can allow any company to make a profit off of you at your unwillingness to do anything about it. Have fun laying on the sofa.
I got very miffed while planning a trip to Denver two years ago for the big Sleep meeting. Jetblue would allow me to carry my unit on board, but would not allow me to use my CPAP during a red-eye flight. I was quite upset asking them, WHY they were keeping apneics from flying red-eyes? I still can't figure it out. I even offered to get a battery operated unit. But was told no.

OK......just HOW would it be possible to get any of this information to the "recently-diagnosed" or "recently-diagnosed-but-not-yet-on-treatment"? (before they get sucked into the typical routine)

By the way......I'm also of the opinion that if there's a way to screw something up......the government CAN "git 'r done".

Den

[jnk]

. . . 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. . . .

When you highlight taxpayer costs of noncompliance, you seem to be lobbying for a law that forces compliance. Are you sure that's what you want to do?

. . . 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. . . .

Your "we" and "our" have ambiguous antecedents. Humans? OSA sufferers? Taxpayers? Promising 'dramatic' improvements in the situation with a proposed "agenda" could sound like grandstanding. "Patient-focused" in this context could be read to imply that no one cares about the patient now. Will that insult the very audience you are trying to reach? And is "poor patient compliance" really the root of the problem? Does that imply in this context that patients who choose not to be compliant should be policed or be punished in some way? Is it clear how "poor patient compliance" leads to "skepticism among physicians"? That wording seems to blame the victims in some way. Referring to "the system" raises immediate red flags for those who have a stake in the present system. It could sound as if you are proposing a completely new medical system, and that could lose your audience. And If you are trying to reach large corporations and medical professionals with a practical approach, your wording should be careful not to create too much of an "us" and "them" dichotomy. Fostering cooperation might be a more practical approach.

. . . As we welcome in a new administration in Washington, . . .

You just lost all non-Democrats.

. . . we believe we patients have a rare window of opportunity to influence policy as it applies to Sleep Apnea. . . . .

Who are "we"? And that opportunity comes up every four years or so. And is there a stated "sleep apnea policy" in existence now that you are addressing, or is this a new creation?

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/blog ... ights-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

Again, what makes this one syndrome worthy of its own national agenda? If the problem is the medical system, the entire system needs to be on the agenda, and I believe it is. Are your proposals meant for incorporation in the present system or in some new overall system you are arguing for?

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)

This is part of the present insurance system. Is this wording an attempt to modify present definitions for "compliance" being used? And if so, why? Either you are arguing insurance companies should be stricter, laxer, or should be cut out of the loop entirely. I am unclear what the argument is supposed to be.

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

Where will you find the funding for the new PAP police? Will they get keys to all our homes for nightly checks in our bedrooms of how successfully we are managing our equipment? Some severe patients will never get anywher near 5 AHI. Others need to get well below that to feel rested. Patients' needs differ. This "right" is our right to make our equipment work, so how is this addressed to someone besides the patient?

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

Would travel machines and backup machines become "illegal"?

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

"Effective" and "comfortable" are subjective terms. How effective? How comfortable? Should all patients be allowed to demand a new mask every day, every week, every month for how long? For forever? The responsibility will rest where? Where will the line of reason be drawn and by whom? How much would this cost?

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

Who will make the list of the hundreds, if not thousands, of products available as comfort accessories? Will the list be handed to every patient every month? If I start making something in my garage to offer on ebay, who is responsible for finding me and putting my product on the list? And if companies change the comfort features on their machines every few months, who will pay for sending all the docs, techs, and DME truck drivers to school to make sure they recommend the right thing for every patient? Is this saying every patient needs an auto?

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 assumes the present system will stay in place. I thought there was some new proposal for a new system. This information is different depending on insurance policies. Equipment companies might like us to need a new hose ever month because they would make more money. Insurance companies might like companies to make $5 hoses that last two years. Who will debate and legislate these issues in CPAP court? And who has to inform the patient of their specific schedules? The wording implies it is the doc, since it is mentioned with the mention of the prescription. But doctors have enough to worry about without learning what equipment companies and insurance companies do. Cleaning recommendations differ with every piece of equipment, too.

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)

I believe your terminology may be confused. Efficacy data is what is needed by the patient, not compliance data. And having all the data on the screen would be the best thing possible--the more data on the screen the better. The screen should give the graphs too, not just summary figures, so that those without software can have access.

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 will be the intervention police in this ideal? What is "a problem"? Would it be "I can't figure out which end of my hose to plug into what" or "I lost the cord for plugging my machine into the electricity" or "I think I may have woke up with a slight headache and am wondering if it could be something about my pressures"? And who decides what a "mutually agreeable solution" is? Some patients aren't "mutual" about anything, and some can't read efficacy data.

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

Why set up a situation to make it sound as if a patient needs a reason to be allowed to make adjustments on his/her own machine? That impies we don't deserve that information from the beginning! And that should be the number one right, since it is a right we already have. But your wording seems to take away that right, unless in some case the arbitrary 48-hour rule is violated as some sort of contractual agreement.

I am not trying to be disagreeable. But I think I have barely scratched the surface in my questions and observations above.

I personally think that patients should be able to get data-capable machines and make their own adjustments if they feel they are capable of that. But there are CPAP patients who disagree even with that belief of mine. And that is only ONE example of what makes the concept of getting all CPAP patients on the same page a difficult one. Patients should have the right to control their own therapy, and fortunately we do already. The problem is the people in the medicine-insurance-equipment system that fight against our rights with less than honest business practices and worse-than-uninformed methods. But too rigid of an approach that would take power away from doctors or patients would be a step toward the dreaded one-size-fits-all/cookie-cutter approach that could cause as many problems as it might solve.

We, the patients, need access to good tools and the knowledge of how to use those tools. So what we need most is for docs, insurance, and the "tool people" to work with us instead of against us as we try to get the tools and information we need.

Or maybe I am just being disagreeable. That's why few people ever ask my opinion, I guess.

[WearyOne]

It can be difficult sometimes to get ANY patient educated in an illness or condition they might have, be it diabetes, OSA, HBP, high cholesterol, thyroid issues, etc. Doctors so many times just throw the easiest thing out there (or maybe the only thing they know), when there might be more and better possible solutions. With OSA, though, you have the added problem of the, "no, the patient cannot know anything about his/her therapy except what I want them to know," attitude that some docs have. And a lot (not all) DME's can be so difficult to work with.

That said, keep the government away, please!! You let them in a little, and then they start deciding that they know what's best for us poor little patients. The government needs to stay out of the social arena. They mess up too much stuff as it is, probably because they shouldn't be involved in the stuff they keep messing up.

Just my !

Pam

[mindy]

jnk,

That is a very thoughtful and well-thought out response. I agree with just about everything you said so well!

Mindy

[WearyOne]

JNK, very, very good!

[sleepguide]

I agree that this is a careful and well-thought out response. I see a lot of common themes among the critiques of the original proposal, which I will address in a revised version, but for now, I think the following captures the main criticisms well, and my (Mike's) reactions to them:

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.

[mindy]

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.

Mike, I think you hit the nail on the head above --- things will not always be interpreted the way you write them and the law of unintended consequences is a critical concept to keep in mind. Your efforts are appreciated ... however I would think very carefully about how each could be distorted by others and result in the opposite of what you so good-heartedly suggest.

The current system is far from perfect but it has resulted in a reasonable solution - places like this forum where those who understand the condition best can exchange information and hints and tips. I'm not sure I want someone who doesn't have sleep apnea to tell me what I can and cannot do/have/etc.

Mindy

[roster]

.............

I am not trying to be disagreeable. But I think I have barely scratched the surface in my questions and observations above.

.........

Let's face it, the so-called PAPer "Bill of Rights" is little more than a joke. Unfortunately jokes are often taken up by our Federal government.

The SleepGuide website page on this subject has a rendition of the U.S. Constitution on a U.S. flag. Obviously they are drawing a parallel to the U.S. Bill of Rights. But I seriously doubt SleepGuide Mike read the U.S. Bill of Rights before he wrote this composition.

Mike should read the first ten amendments (Bill of Rights) to our Constitution. All ten amendments put strict limits on what the Federal government can do to its citizens. Mike's "Bill of Rights" puts no limits on what the Federal government can do. In fact, it expands the power of the Federal government to meddle in the lives of patients and providers of medical services and products.

If Mike wants to write a genuine "Bill of Rights", he should think in the direction of what our government should not be allowed to do. Just for example, "... shall not require prescriptions to purchase cpap equipment ...", "..... shall not restrict educational materials about how to use the equipment including information about how to self-titrate and change equipment settings ......" Help us out Mike; don't help the government to grow larger and more cumbersome.

Now Mike asks one of his minions to post a personal attack against me under the Guest name Somnonaut. Somnonaut adds nothing but name calling and his 'for' vote to the debate. As far as a 25+ years career as a sleep lab director being qualifications for anything but directing a sleep lab, I trust more the opinions of cpaptalk members who have not worked inside the industry.

I assume this poor attempt at a Bill of Rights will be revised in a major way or will die a quick death. I will keep watching in case it starts to move forward.

[roster]

........ I'm not sure I want someone who doesn't have sleep apnea to tell me what I can and cannot do/have/etc.

Mindy

Mindy,

You get the prize for clarity on the subject!

And I guess you don't even want someone with sleep apnea to have the power to direct you.

[mindy]

And I guess you don't even want someone with sleep apnea to have the power to direct you.

Rooster - you betcha I don't!

Mindy

[sleepguide]

Rooster, I will take your advice and frame this more as restrictions on government than something that can be construed as restricting on patients. But i'm sort of amused at how some of these very innocent ideas --- e.g., that successful compliance should be determined not only by how long a machine is being used, but whether it's being used effectively --- some how get construed as clamping down on patients' autonomy. that was not the intent.

[roster]

Rooster, I will take your advice and frame this more as restrictions on government than something that can be construed as restricting on patients. ........

Mike, Sweet! A couple more like that and I will add your site to my bookmarks.

Rooster, ..... But i'm sort of amused ........

I don't charge extra for the amusement value. Sometimes it is intentional, but often it is inadvertent from an apnea-damaged brain.

[jnk]

. . . very innocent ideas . . . get construed as . . . that was not the intent.

It is often the "innocent" ideas that get misconstrued in such a way as to be used very differently from their intent. That is always the danger. And that is why I think the advice you got in an earlier thread on a related subject is so very, very important:

". . . Be sure the change is the one you expect. . . . Be sure to do all the research before you stir the pot."-- viewtopic/t37322/viewtopic.php?f=1&t=37049&p=322561