PAPer "Bill of Rights"?

[sleepguide]

Guys,

I've been working on a political advocacy program for sleep apnea patients and have come up with a PAPer "Bill of Rights" that I'd propose to put in front of industry leaders, elected officials, etc. As you can see it's just a draft, and I would appreciate any feedback/criticism you have. I will take it into account and work toward a polished agenda that is ultimately ready for "prime time."

Warm regards, and Happy New Year,

Mike


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/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

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

[Wulfman]

Hi Mike.

Here are some links to previous discussions about the same subject. (there's really nothing "new" here)

The first one is humorous.....the next two are serious. Maybe you'll get some ideas for your version.

viewtopic/t37322/viewtopic.php?f=1&t=56 ... hts#p50441

viewtopic/t37322/viewtopic.php?f=1&t=93 ... hts#p80002

viewtopic/t37322/viewtopic.php?f=1&t=93 ... hts#p80686


Den

[Captain_Midnight]

Hi Mike.

You ask for feedback, and I'll give mine in the form of respectful and constructive criticism.

I don't think we have "rights" to be given things. I do think that we can nudge the medical establishment in various ways, but I especially do not like "political actions" because once you have politicians trying to organize you into a voting bloc, they will try to make a "victim" of you. If politicians were to use this, they would try to call us "disabled". No thanks!

Respectfully, I think that the tone is somewhat petulant and demanding. While the notion of (capable) apneic patients taking some control over their own therapy is one I share; I do not want anyone from D.C. telling my doc or DME what they need to do for me. I'm quite capable of finding others if mine were not top notch (which they are).

I appreciate your enthusiasm and activist energy, but take it from one who spent 30 years in the government, you do not want the government prescribing any of your apnea therapy.

Kind regards - - Capt M.



.

[sleepguide]

I have been following the excellent posts on this forum for long enough to know that these ideas aren't "new" per se. what i'm trying to do is come to some sort of synopsis of what we as patients want, and then putting it before at least the medical establishment, if not the government. the last thing i would want is for this to somehow backfire and have government limit the treatment patients get. the agenda is meant to do the opposite.

[SleepyD]

Interesting concept. Anyone know whether there's precedent for this kind of thing with other health conditions?

[mindy]

I have been following the excellent posts on this forum for long enough to know that these ideas aren't "new" per se. what i'm trying to do is come to some sort of synopsis of what we as patients want, and then putting it before at least the medical establishment, if not the government. the last thing i would want is for this to somehow backfire and have government limit the treatment patients get. the agenda is meant to do the opposite.

Hi sleepguide,

I think your efforts are commendable. I do agree with Captain Midnight on the issue of government dictates. One small example: if providers are required to respond within 48 hours, then in effect the government will be dictating our treatment. I believe that this should be between provider and patient. I'd rather see easy-to-find information for patients that will empower us to figure out if our treatment is reasonable or not. If a provider is required to respond within 48 hours no matter what the problem, that's going to be added cost to our healthcare system that is already overburdened with regulations. It might encourage providers to respond *only* at the 48-hour timepoint rather than earlier if it is needed. It also doesn't take into account situations where a patient is clearly abusing the system and demanding time and attention when it may not be necessary.

Although I agree that masks are a huge issue, in some places there are solutions for this. I was able to try on (lying down with machine on) several masks in our sleep lab and they let me borrow some of them for a week or more. It's not unusual for a mask to work if one has the patience to tweak them over a few weeks. Allowing for unlimited mask replacements would encourage people to switch without really making the effort to make them work. Everything doesn't have to be paid for by insurance - I buy my own masks if I really want to try something different (my regular mask does work, although not perfectly).

I have read plenty of bad situatations people have encountered in sleep labs and with DME's. One way to improve is via government regulation, the other is by enabling people to get the information they need (as in this forum, and by choosing their providers and DME's when possible). With government regulation would come limitations I doubt we'd want to live with. Neither solution will resolve all problems.

Although done with the best of intentions, I hope you'll reconsider your petition.

Mindy

[Hawthorne]

SleepyD - In Canada, few years back, a "Bill of Rights" for people with arthritis was developed and a big "todo" was made of it when it first came out. In my opinion, it was a pretty good thing and made good points.

After about 6 months, it went on a back burner somewhere. No one refers to or even mentions it anymore. It is there but nothing ever came of it and no one even makes reference to it anymore.

[roster]

Gimme, gimme, gimme the nanny state.

No thank you, I will manage my treatment with my own abilities and the freely-given help of fellow apneics. I will buy services and products from companies and individuals that want to make a profit from serving me. I don't want a government forcecibly taking money from me and then deciding what service "to give back" to me.

Keep the Feds out of my bedroom and out of my Encore Pro software.

[Wulfman]

The "problem" that has always existed in my mind is how to get ANY of this information to the XPAP therapy patients BEFORE they need it. I highly doubt that any sleep doctors, sleep centers, DMEs or others would allow or encourage the reading of this type of enlightening material by their (soon-to-be-fleeced) patients. The majority of them do NOT want their patients to be knowledgeable about this therapy as that would be taking future income from their pockets.

You also have the situation with the vast majority of XPAP patients that....."don't know....don't care.....don't want to get that involved with their therapy". And, until some months down the road when the "profit-making-el cheapo" crap that they were handed by the DME (nasal mask and non-data-recording CPAP)......isn't helping them.....and isn't stashed in the closet yet or hasn't been sold in a yard sale or on a website.....THEN they start looking on the Internet for other information.

Den

[roster]

.......You also have the situation with the vast majority of XPAP patients that....."don't know....don't care.....don't want to get that involved with their therapy". ...........

So true Den. I believe the high school dropout rate today is 30% and having recently taught college courses I can tell you many college students aren't much better. And we expect those people to be involved with managing their therapy?

The "problem" that has always existed in my mind is how to get ANY of this information to the XPAP therapy patients BEFORE they need it. I highly doubt that any sleep doctors, sleep centers, DMEs or others would allow or encourage the reading of this type of enlightening material by their (soon-to-be-fleeced) patients. The majority of them do NOT want their patients to be knowledgeable about this therapy as that would be taking future income from their pockets.

.....

Now I say look at what many of the hospitals and medical clinics are doing with their diabetes patients. They have very formal intensive educational programs to teach their patients how to manage their diabetes. I believe we need to push for something like this for sleep apnea. Then the people who care about their health and will work to improve it have a chance. There will always be those who get left behind. We can show these people the water but we can't lead them to it and force them to drink it.

[Wulfman]

Now I say look at what many of the hospitals and medical clinics are doing with their diabetes patients. They have very formal intensive educational programs to teach their patients how to manage their diabetes. I believe we need to push for something like this for sleep apnea. Then the people who care about their health and will work to improve it have a chance. There will always be those who get left behind. We can show these people the water but we can't lead them to it and force them to drink it.

I've (experienced and) read numerous (horror) stories about those situations, too. In far too many cases, the doctors just prescribe pills and say come back in 3 months. If the patients DO get educational programs, what they suggest to eat is far too high in carbohydrates and it becomes a vicious cycle between the pills and food and the doctor visits. The traditional "food pyramid" which has been pushed for so many years by the ADA is so heavily weighted in carbs......it's sad. It was only about a year ago that the ADA relented somewhat and gave it's "blessing" to better alternatives like the Atkins and Mediterranean diets.
Another problem comes with "testing". To know just how foods affect any individual, you need to test your glucose levels frequently. Unfortunately, the testing strips are expensive and the doctors don't want to write prescriptions for more than a couple of times a day.....if even that. It reminds me of the sleep doctors.......here's your pressure.....I'm right and you don't need any more information than that.

See a pattern here? It's in the medical professions......

Den

[roster]

Den,

I thought mankind was made with an innate desire to "do good" for his fellow man. That's a shame what you are reporting with the diabetes situation. That and what has gone on in banking, our government and Wall Street might soon push me to a darker view. I guess there are many Mengeles still out there?

[gasparama]

It's good to see that you have summarized the needed education and provision for CPAP users. But the idea of putting our care into the hands of the feds is just frightening to me.

I so agree about the problem with the food pyramid. When I went in to see the nutritionist about proper diet for diabetes, I was horrified. This government sanctioned program set me up to eat 180 grams of carbohydrate a day. Gee! That would mean a need for injected insulin, more testing daily, more adjustments and of course, higher blood glucose. That's not the way for me. That's dangerous. I'm not going to research this right now, but I do believe that the cereal manufactuers had a big hand in developing the food pyramid. And our fearless leaders were only too happy to accept their contributions and push this diet to the millions of guilable followers.

And while we're at it, lets keep the feds out of the elementary schools, too. But, that's a subject for another forum.

Although the medical system is pitifully behind in CPAP treatment and education, getting the feds involved will only make it worse. My brick and mortar DME RT provides me with some of the best service around. But this guy told me that he "voted" on the raising of the minimal online pricing for CPAP equipment. He didn't specify the medium for his voting: Respironics, F and P, Resmed, or maybe a union. But he voted on something that hurt the consumers. Now, these guys (whoever they are) that voted might be big enough to influence the lawmakers and could just turn that totally around to their benefit just as the food pyramid was built to benefit certain groups.

I apologize if I am being offensive. I'm not well-spoken, but I am a fedaphobe.

[Wulfman]

gasparama,

I agree with everything you said.
I have some other thoughts and insights about the school luch-breakfast programs, but like you said, that's for another forum

Den

[gasparama]

gasparama,

I agree with everything you said.
I have some other thoughts and insights about the school luch-breakfast programs, but like you said, that's for another forum

Den

Oh man, we can't get started here about that program. I'll say this and then shut up: It is a very high carb program. And all carbs turn into what in the bloodstream? Sugar, of course. And blood sugar causes the release of insulin, the fat hormone. I teach in a school where we have 1-4 obese children in every room. And they are all on the fed. program and are getting fatter and fatter. Shut up, Jane!!!!