Is CPAP a scam of sorts? - my story

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Visitor
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Re: Is CPAP a scam of sorts? - my story

Post by Visitor » Sat Jun 07, 2014 11:23 am

That still doesn't make it a scam. A scam is something fraudulent that does not do what is advertised and only exists to make money for the salesperson. The fact that some people have issues with cpap therapy does not make it a scam. Some people have a hard time learning to drive a car, that doesn't mean cars are a scam.
Indeed.
1. Failure to do unbiased research into how usable CPAP is (and is not) and to present the results of that research to the customer so that the customer can make an informed decision.
I've seen some comparative research reported online (comparing various brands). Outdated by this time I believe, and I've seen little of that type of research. Then again, I'm not a specialist in that area or in the medical field.
2. Sleep studies done in the lab (at great expense) rather than the home. Bad science since we do not sleep in the lab. Bad science since we sleep different every night (you need several nights to really know but the extreme expense...). Bad science since the expense of the test hampers sleep.
3. Titration done in the lab. Same basic issues as with sleep studies. To be effective titration needs to be ongoing. I believe it is best to make small changes at home and use the home gathered data to determine if further changes are needed. But then you would need to see that the data was monitored...
This is not my experience. I've had an at-home test in the past (though it was for one night). And I'm currently using an APAP for a month where the data will be analysed at the end of the month. Changes will be prescribed after this. The fact that expenses prevent a better scientific approach is frustrating, but not a scam.
4. Failure to educate the customer regarding the limitations of CPAP regarding usability and expected results.
That depends on the specialists in question. I can't see it hold across the board necessarily.
5. Failure to educate the customer as to how to use and get used to CPAP.
I'd agree that could be better. But does that make it a scam? And I can see why this education on how to use medical equipment is controlled, even though I think patients can be trusted more. I would not like to be a medical specialist supervising a patient that starts adjusting their catheter either. The analogy is not completely on par, but still... How is the desire to protect the patient from making potential errors in treatment a scam?
6. Failure to monitor how the customer is doing with CPAP as time goes by. The body will change the therapy must also change to be effective but it does not happen.
I guess I'll find out. I'm a relatively new user. Again, I imagine this depends on the specialist. The fact is that with Sleepyhead, many patients do monitor it.
7. Blaming the customer when CPAP fails in spite of the fact that it does not treat many of the causes of sleep apnea and actually exacerbates some of the nonanatomic causes[1,2].
I'll have to chase that up. But again, it will depend on the specialist in question.

I'm not disagreeing with all of what you are saying. And I'm certainly not a full blown convert. I've struggled with this condition for many years, without getting improvement. Currently I have great days and bad days (and am only using APAP for a short time). The great days give me a lot of hope that things may improve. I have not felt this good in years, and my family is noticing the difference. So the jury is out in my case. I merely don't think this constitutes a scam. Science moves slowly, could be better in many cases, but it does not necessarily mean that there is ill intent (a "scam") behind that fact. I'd love to see more independent studies too, and in particular more information for patients on such studies, the differences between machines (algorithms used), statistics on success rates etc. So I take your point that the situation is not ideal. But I'm concerned that going as far as calling it a scam may lead to people, who may well benefit greatly from treatment, decide not to seek medical help when needed because an unwarranted label is attached to a developing technology.

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Re: Is CPAP a scam of sorts? - my story

Post by ems » Sat Jun 07, 2014 11:49 am

robysue wrote:But, like any medical therapy, there are also a very small number of individuals for whom PAP never seems to make a positive difference (in terms of quality of life) in spite of a good attitude towards CPAP and 100% compliance with good efficacy data. And for some of these "non CPAP-responders", it is not at all clear whether the health benefits from using the CPAP every night, all night long outweigh the health risks of dealing with severe CPAP-related fragmented sleep night after night for the rest of their lives.

My "fragmented" sleep seems to be getting better and I really want to believe that this therapy is working for me, altho I don't feel like it is. I keep at it because three doctors and a few people on this forum think I need the oxygen it provides. Probably I do... according to my sleep study I wasn't getting the oxygen my body needed. Sometimes I think I feel less fatigued during the day and I'm not even sure about that. It's difficult to keep doing something that you are convinced isn't helping very much. I still have to have a discussion with myself every time I put my mask on.

I'm not alone with this feeling. I've received several PMs telling me they feel the same as I do but are afraid to admit it here. I tell them that's a shame bc someone might be able to help tweak their therapy so that maybe they would feel better. I don't know... who knows the real story about all this anyway. In the meantime, I mask up because I'm afraid not to. I hope that's a good enough reason.
If only the folks with sawdust for brains were as sweet and obliging and innocent as The Scarecrow! ~a friend~

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Re: Is CPAP a scam of sorts? - my story

Post by robysue » Sat Jun 07, 2014 11:53 am

49er,

Two things:

One, as BlackSpinner points out (and you agree): The fact that CPAP works well for a lot of people and that it can be scientifically demonstrated that it works well in a lot of people means that it is NOT a scam.

Two, it's actually very hard to tease apart the number of true non-responders from the large number of people who on the surface "just give up" because of the piss-poor patient support and education the new PAPer receives.

It's one thing to work hard at making PAP work and understand that it's a process and take the time to iron out as many things related to therapy and still not feel good. You're an example of someone who falls into this category, and it's legitimate to say some people really cannot tolerate PAP and figure out a way to make it work.

But many, many new PAPers simply just give up as soon as the going gets tough because they get absolutely NO useful feedback from the sleep health care folks who are supposed to be "helping them." Consider the typical newbie set up:

S/he is given a brick that records no efficacy data and (too often) a poorly fit mask. S/he is often told to just keep tightening the mask straps if s/he detect leaks, s/he tightens that mask down so tight that it's painful. And it's possible that the only leaks that exist are the intentional leaks coming from the vent, but nobody mentioned that to our hapless new PAPer. And so our new PAPer understandably has significant problems getting to sleep and staying asleep. After a week or two of fighting the mask s/he is starting to do the clock watch dance: Every time s/he wakes up, s/he looks at the clock and asks: Have I got my four hours in? And on the first wake where the answer is "yes", off comes the mask. And so the new PAPer's sleep is getting more and more fragmented rather than less fragmented. And in a couple of weeks or a couple of months, the PAPer is even more exhausted than s/he was pre-CPAP and starts to question the whole idea of whether PAP is really necessary.

At the first follow-up visit (if there IS a first follow-up visit), the only data available to the doc is the usage data. Which of course is "spotty" because the newbie is fighting with the mask and taking it off after barely four hours of mask time. So the doc says (usually way to smuggly): You need to try harder; you're not going to feel better until you are fully compliant. The doc may (in an attempt to help) suggest a chin strap or a full face mask in order to address the (potentially non-existent) "leak" problem. But the doc doesn't mention or suggest switching to a full efficacy data machine to find out what's really going on. After another month or two of trying unsuccessfully to fight the CPAP demon which s/he doesn't fully understand, the newbie gives up for good and throws the monster into the closet.

The new formerly new PAPer and now new ex-PAPer will say s/he just could not tolerate the machine. The doc and DME will blame the ex-PAPer for just giving up. The real truth is, we have no idea what the problem is, but we know the sleep medicine industry (not the CPAP) failed the patient on a number of points:
  • By providing a brick, the industry set the patient up to fail since there was no way to see if the recommended settings were doing any good or whether the chosen mask was proving to be too leaky.
  • Neither the DME nor doc provided enough useful information about the mask and what mask leaks are and how to fix them. The distinction between intentional venting and leaks was not explained sufficiently well to the patient, and the patient over reacts to every little bit of air s/he feels coming out of the mask regardless of where it's coming from.
  • By focusing on the patient reported leak problem, but not investigating what s/he meant by "I feel some leaks", the doc and DME continue to beat a (potentially) dead horse AND at the same time don't educate the patient on how to figure out whether the leaks s/he is feeling are normal intentional venting or real leaks. Chasing the red herring of "patient reported leaks" also means no-one is thinking about whether the therapy settings are doing their job and whether this particular patient is in that 10% of new PAPers who have real problems with pressure induced centrals.
  • By telling the patient to just keep trying harder, the doc and DME (while trying to be supportive) are actually undermining the patient's confidence in his/her ability to eventually make this crazy therapy work. And that's highly counterproductive: When you are already working as hard as you can to do something that you don't fully understand, it doesn't help to be told (repeatedly) that you are just not working hard enough.
And the sad thing is, if this OSA sufferer had gotten a proper machine with proper instruction and feedback, then there really is a pretty high probability that the new PAPer would have made it to "long term successful PAPer" instead of giving up and throwing the damn brick into a closet because it had become easier to suffer the daytime symptoms of the OSA than it had to deal with the CPAP and the damn DME and the damn doctor.

So you see, when I say many new PAPers give up too soon, I'm not blaming them for giving up: I really think that the current problem with CPAP is that the way the medical professionals work with new PAPers is anything but professional. But when a PAPer gives up because of inadequate patient support and education, that does not mean that they are a non-responder to PAP therapy. It means we really don't know if PAP would have worked for them if they'd managed to get through the gauntlet of bad patient education and bad support the typical new PAPer is forced to go through.

Things will only get better once high quality patient education and support programs are available to all new PAPers. We really ought to be given the same kind of high quality education and support programs and medical follow-up that are provided to newly diagnosed diabetics. But right now, too many sleep docs and DMEs want us to remain ignorant of our condition and our therapy. And that in and of itself goes a long way to explain most (but not all) of the high rates of non-compliance with PAP therapy in my opinion.

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Re: Is CPAP a scam of sorts? - my story

Post by Visitor » Sat Jun 07, 2014 12:12 pm

I can relate to most of robysue's post (bar the brick and follow-up, so I guess I'm lucky). I definitely agree with too little information about dealing with leaks etc. I got a very quick overview by the DME, but over tightened for several nights as I wanted to cut out all leakage and some leaks are no fun to say the least. I never was told about the chin strap, and only slept well after discovering on a forum that not having one might have been my main problem. It turned out it was. I did get more info from the DME when I asked but each question came after costing me one night sleep at least that could have been avoided with better info sharing from the start and systematic training. It may seem like a small issue, but for patients struggling with what is known to be a difficult adjustment, losing needless sleep is only bringing them closer to quitting. People need to experience leaks when they try out the equipment for the first time, ideally they should see the figures and understand what is ok and what is not. That takes time and effort, but the high rate of patients not following through is indicative that there is a serious issue. If that is too costly to carry out (I would be surprised it would be), it should be easy to set up some CPAP training on the actual equipment, so patients can try matters out, and get feedback on the types of leaks they experience.

I have found these forums tremendously valuable to get tips on dealing with some of these issues.

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Re: Is CPAP a scam of sorts? - my story

Post by Todzo » Sat Jun 07, 2014 12:14 pm

Visitor wrote: I'm not disagreeing with all of what you are saying. And I'm certainly not a full blown convert. I've struggled with this condition for many years, without getting improvement. Currently I have great days and bad days (and am only using APAP for a short time). The great days give me a lot of hope that things may improve. I have not felt this good in years, and my family is noticing the difference. So the jury is out in my case.
Indeed if you look at my post[1] I am not against CPAP (or xPAP for that matter) at all. I am happy to use it myself and very happy when I hear that it is working for others.

I simply want to see CPAP work for more people!!!
Visitor wrote: I merely don't think this constitutes a scam.
If you look at my original post[1] you will see indications that there is incompetence, misrepresentation, withholding of information (and/or prevention of it's generation), and deflection (blame the customer for the product not working) in the way that CPAP is currently implemented..

As I went to look up scam Google led me to the Wikipedia article on “confidence trick”. Misrepresentation definitely applies. I think deflection also applies since it misrepresents where the real problems lie. And I think that representing incompetent practices as golden standards is playing a trick on us all.
Visitor wrote: Science moves slowly
Not true.
Visitor wrote:, could be better in many cases, but it does not necessarily mean that there is ill intent (a "scam") behind that fact.
What is preventing the science we do have from being implemented in sleep medicine?
Visitor wrote: I'd love to see more independent studies too, and in particular more information for patients on such studies, the differences between machines (algorithms used)
I understand that even the doctors are not made aware of what the machines are actually doing. This whole thing is done way way way too much in the dark!!!
Visitor wrote:, statistics on success rates etc.
It would be nice to see some using good unbiased objective data long term.

What are they afraid of?!?!?
Visitor wrote: So I take your point that the situation is not ideal. But I'm concerned that going as far as calling it a scam may lead to people, who may well benefit greatly from treatment, decide not to seek medical help when needed because an unwarranted label is attached to a developing technology.
Again, I am not against the technology. I am disgusted with how it is being implemented. And I believe strongly that if we clean that up a lot of people will get better, the “word of mouth” reputation of xPAP will improve, and a whole lot more people will be knocking down the doors to get to it.

[1] Original Post:

CPAP is a product that can work for some people.

It's current implementation:

1. Failure to do unbiased research into how usable CPAP is (and is not) and to present the results of that research to the customer so that the customer can make an informed decision.
2. Sleep studies done in the lab (at great expense) rather than the home. Bad science since we do not sleep in the lab. Bad science since we sleep different every night (you need several nights to really know but the extreme expense...). Bad science since the expense of the test hampers sleep.
3. Titration done in the lab. Same basic issues as with sleep studies. To be effective titration needs to be ongoing. I believe it is best to make small changes at home and use the home gathered data to determine if further changes are needed. But then you would need to see that the data was monitored...
4. Failure to educate the customer regarding the limitations of CPAP regarding usability and expected results.
5. Failure to educate the customer as to how to use and get used to CPAP.
6. Failure to monitor how the customer is doing with CPAP as time goes by. The body will change the therapy must also change to be effective but it does not happen.
7. Blaming the customer when CPAP fails in spite of the fact that it does not treat many of the causes of sleep apnea and actually exacerbates some of the nonanatomic causes[1,2].

Is worthy of being called a scam.

[1] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC

[2] Sairam Parthasarathy M.D., Emergence of Obstructive Sleep Apnea Phenotyping. From Weak to Strong! American Journal of Respitory and Critical Care Medicine VOL 188 2013
-- critical closing pressure [Pcrit] - Arousal Threshold - ventilatory control Loop gain - and genioglossal Muscle responsiveness. Pcrit, Loop, Arousal, Muscle (PALM)--
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Re: Is CPAP a scam of sorts? - my story

Post by Visitor » Sat Jun 07, 2014 12:34 pm

Ok, I'm going to make a little conjecture. CPAP is a niche area in medicine. Others, more knowledgeable, may set me straight on that. I realize that selling this equipment is relatively big business, but setting up independent studies etc. may not be easy. It would require government funding. I can imagine scientists putting in proposals for such studies and evaluation boards comparing needs. Cancer studies against CPAP treatment analysis? Well, let's put the CPAP analysis proposal at the bottom of the list for the moment. It's interesting, but...

Again, I'm not in the area. But I wouldn't be surprised if such issues arose. Very unsatisfactory if you happen to be a patient falling in a "niche" category.

As to science moving slowly. It does in many cases. Could it move faster? Sometimes, if the resources are put into it. And I see your point that if comparative studies have not been done, this might be a quick thing to do. There might be a lot of scope for comparative CPAP analysis, actual patient impact etc. There are many potential barriers, like the above one. But again, I have no expert view on it, other than comparing the situation with different science areas that I happen to be familiar with. How big is the pool of apnea patients compared to other patients? How serious is the condition deemed?

It take your point that matters could be better and should be. I'm sure that many specialists would love to see such improvements. I don't for one moment believe that most are indifferent etc. I'm sure that there are people working hard to push through such improvements, applying for grants to make the research happen etc. Maybe some of those proposals succeeded. I don't know. It is very frustrating when your health depends on that type of situation. I'd say we mostly disagree on semantics here (the unfortunate title thread).

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Re: Is CPAP a scam of sorts? - my story

Post by Goofproof » Sat Jun 07, 2014 1:05 pm

Hense, the result of bringing up a 7 year old whine thread. The results,

1. If you have the symptoms of sleep apnea, get treatment and make it work.

2. If you are lame enough to think it junk medicine, don't drive, put you head in the sand, so you won't affect others. Soon thd rest of you body will follow.

De-Nile is best served Wet! Jim

(I don't answer polls to feel like I have something to say that means anything, I don't post on topics that are older than 6 months as old info isn't as reliable as new usually. I read new and old posts without posting on the old, that creates a neverending recycle of old info.)
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

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Re: Is CPAP a scam of sorts? - my story

Post by robysue » Sat Jun 07, 2014 1:15 pm

Todzo wrote: It's current implementation:

1. Failure to do unbiased research into how usable CPAP is (and is not) and to present the results of that research to the customer so that the customer can make an informed decision.
2. Sleep studies done in the lab (at great expense) rather than the home. Bad science since we do not sleep in the lab. Bad science since we sleep different every night (you need several nights to really know but the extreme expense...). Bad science since the expense of the test hampers sleep.
3. Titration done in the lab. Same basic issues as with sleep studies. To be effective titration needs to be ongoing. I believe it is best to make small changes at home and use the home gathered data to determine if further changes are needed. But then you would need to see that the data was monitored...
4. Failure to educate the customer regarding the limitations of CPAP regarding usability and expected results.
5. Failure to educate the customer as to how to use and get used to CPAP.
6. Failure to monitor how the customer is doing with CPAP as time goes by. The body will change the therapy must also change to be effective but it does not happen.
7. Blaming the customer when CPAP fails in spite of the fact that it does not treat many of the causes of sleep apnea and actually exacerbates some of the nonanatomic causes[1,2].
Blaming the SYSTEM does not make the therapy a scam. It means that the SYSTEM needs to be changed.

Saying "CPAP is a scam" indicates that CPAP is an unscientific and ineffective treatment for OSA for all patients. The calling a proposed therapy a "scam" is the equivalent of calling it "snake oil".

And any way you look at it, the scientific data demonstrate that CPAP is effective at treating OSA in large numbers of patients with OSA; it's far more effective than many other commonly accepted medical therapies for other conditions. So CPAP is definitely NOT a scam.

The problem you describe is with the SYSTEMATIC way docs and DMEs interact with OSA patients, and I strongly agree that the SYSTEM is indeed badly broken. And one part of that badly broken SYSTEM is how docs and DMEs interact with patients who do turn out to be genuine non-responders to CPAP therapy. There are also a lot of problems in the SYSTEM with how docs and DMEs interact with people who respond to PAP, but not in the anticipated way and there are problems in the SYSTEM with how doc and DMEs interact with newbies who are struggling to become compliant in the first place.

But CPAP is NOT the only commonly prescribed therapy for a chronic medical condition with a very high rates of "non-compliance" and "non-adherence" and "non-persistence" from the patients. Two other common chronic medical conditions with high rates of non-compliance/adherence/persistance are glaucoma and high blood presssure:
  • From Adherence and Persistence with Glaucoma Therapy published in the medical journal SURVEY OF OPHTHALMOLOGY come two remarkable statements concerning patient adherence/compliance with long term drug therapy for managing glaucoma and high blood pressure:
    • "Recent research brings the unwelcome conclusion that persistence with initial glaucoma medication is as low as 33--39% at 1 year" (page S58 and footnoted with several sources for this statistic)
    • In U.S. studies of prostaglandin analogs, the adherence rate for glaucoma eyedrops is similar to that for hyperten- sion pills, a disturbing 70% over time.
  • From Medscape comes this statement with respect to a large study of glaucoma patients adherence to therapy:
    • "The overall mean and median rate of medication compliance were 52% and 57%, respectively. But this overall picture did not accurately reflect the real situation, the researchers believe. They found that the data were bimodal in terms of the MPR: 27% of the patients were poorly compliant, 31% were fairly complaint, and 31% were highly compliant"
  • Long term high blood pressure management is also problematic. From Medication Adherence and Persistence in Hypertension Management we get this statement"
    • "Rates of nonadherence to antihypertensive medications range from 9% to 37%, while nonpersistence has been found to occur at even higher rates (30% to 50%) in patients 12 months after the initiation of antihypertensive therapy."
  • In After the Diagnosis: Adherence and Persistence With Hypertension Therapy
    • "It is believed that poor adherence to therapy contributes to lack of good BP control in more than two thirds of people living with hypertension.6 As many as half of all patients who use antihypertensive drugs have been found to discontinue treatment within follow-up periods ranging from 6 months to 4 years.[7-10]"
So are we to conclude that glaucoma and high blood pressure therapies are scams because large numbers of people who are prescribed these therapies do not manage to become compliant with the prescribed therapy? Should we assume the problem is these therapies are ineffective in large numbers of people because way too many people quit taking the prescribed drugs for a multitude of reasons? Or are the therapies are effective for most people if they can adhere to the therapy in the long run, but the problem is becoming compliant/adherent to therapy in the first place?

Of course, one big difference is that that the docs who are working on improving patient adherence/compliance/persistence with glaucoma and high blood pressure therapies openly acknowledge the problems their patients face with becoming and staying compliant, and they might not so quick to use "blame the patient" language as the sleep docs who treat us seem to be.

Of course, another difference between (glaucoma and high blood pressure) and OSA is that there are other medications out there if a particular patient has a very bad response to a particular medication. And unfortunately, right now, there don't seem to be any alternative treatments for OSA that have been demonstrated to be highly effective for large numbers of people with severe OSA except, of course, for doing a trach on the person.

But research into alternatives is taking place. For example, well fitted oral appliances have been proven to be highly effective in many, but not most for people in the mild and mild-to-moderate range. The tongue-zapper that's being developed may indeed eventually revolutionize how OSA is treated, but right now, it's effective only if the person has one well defined problem area that causes the collapse of the airway and has significant potential risks associated with it as well as a significant price tag.

It would be nice if more research were being done into making xPAPs more comfortable and more tolerable. And it would be really nice if part of that research did include figuring out why some people do respond so badly to CPAP in spite of being fully compliant with good efficacy data numbers. It would also be nice to see further research into why some people do go on to develop real problems with centrals once they start CPAP. It would also be nice to see additional research into determining which patients would benefit from using a bi-level or ASV even if all they've "technically" have is plain old OSA. And of course, it would be very useful if the differences between UARS and OSA were better understood and if some studies could definitively answer the question of "What's the best thing to do for a person with UARS?"

But much more immediate, it would highly useful if the sleep medicine community would get serious about implementing quality patient education programs and patient support programs, because there have been a number of studies done that show these two things WOULD go a long way towards increasing the overall compliance rates for CPAP.

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Re: Is CPAP a scam of sorts? - my story

Post by avi123 » Sat Jun 07, 2014 2:07 pm

Your situation could have been solved by checking your oxygen blood saturation with a pulse oximeter on your finger (which costs about $80). Just checking your oxygen saturation while asleep for a few hours without the chinstrap and next with the chinstrap could have solved your situation. Your oxygen blood saturation rate need be 90% or above most of the time. Apparently, you did not pay attention to posts on this website! It is your fault and you paid dearly for it.

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Last edited by avi123 on Sat Jun 07, 2014 2:15 pm, edited 1 time in total.
see my recent set-up and Statistics:
http://i.imgur.com/TewT8G9.png
see my recent ResScan treatment results:
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Re: Is CPAP a scam of sorts? - my story

Post by robysue » Sat Jun 07, 2014 2:14 pm

Visitor wrote:Ok, I'm going to make a little conjecture. CPAP is a niche area in medicine. Others, more knowledgeable, may set me straight on that.
The problem is not so much that sleep medicine in general or OSA/CPAP in particular is a "niche" area. The problem is that there is no glamour in treating OSA patients. OSA is one of many, many chronic diseases that are often exacerbated by the modern day sedentary American lifestyle with a diet full of junk food. And hence, there's no more glamor in treating OSA patients than there is treating folks with high blood pressure or diabetes or osteoarthritis. Unfortunately, the dollars go to much more glamorous fields like cancer research ...
As to science moving slowly. It does in many cases. Could it move faster? Sometimes, if the resources are put into it. And I see your point that if comparative studies have not been done, this might be a quick thing to do. There might be a lot of scope for comparative CPAP analysis, actual patient impact etc. There are many potential barriers, like the above one. But again, I have no expert view on it, other than comparing the situation with different science areas that I happen to be familiar with. How big is the pool of apnea patients compared to other patients? How serious is the condition deemed?
Actually a lot of these studies HAVE been done, but they were done a long time ago---as in the 80s, 90s, and early 00s. When CPAP was first invented, there was a lot of interest because it was the first effective, non-invasive therapy for OSA. Prior to the invention of CPAP, the only effective therapy medicine could offer was a trach. And that option only made sense from a risk/benefit analysis for the people with the severest of severe OSA---people who literally were in danger of dying each and every night when they went to sleep.

Studies HAVE shown that CPAP is effective in a large majority of all OSA patients who use the machine as intended (every night all night long) when it comes to:
  • Reducing the AHI down to normal levels
  • Keeping the nocturnal O2 saturation above 90%
  • Relieving daytime exhaustion if it was significant prior to the OSA diagnosis
  • Relieving daytime sleepiness if it was significant prior to the OSA diagnosis
  • Increasing daytime alertness and functioning
  • Reducing the probability of getting into an accident caused by falling asleep at the wheel
Studies HAVE shown that for folks with severe OSA, nightly use of CPAP DOES decrease the risk of a whole host of co-morbidities including
  • Stroke
  • Heart disease
  • Diabetes
Whether CPAP clearly reduces the risk for these co-morbidities for folks with moderate or mild OSA has not been firmly established according to my sleep doctor. But as he said to me, there's not much long term data (as in 15-20 year studies) that have been done simply due to the difficulty of doing very long term studies.

What hasn't been done to the best of my knowledge is a careful comparison between folks with OSA who take to CPAP like a duck to water and start feeling (much) better almost immediately (like my hubby) and folks who struggle for months or years with CPAP and still never manage to feel any better, or even feel worse, in spite of being on CPAP (like me). In other words, it's known that some people really never manage to get to where they feel any better even though they PAP every night, all night long and their efficacy data looks good, but there's not much known about why these people (including me) react so badly to starting CPAP and there's not much known about how to make PAP work better for these folks.

When you wind up in that category, its often very hard to even get useful information from a sleep doc or a DME because there is a tendency to use language that does come across as blaming the patient. I still have emotional scars from being told by the PA treating me, "You've failed CPAP therapy and the only idea the I and the doctor can think of is to try you out on BiPAP". Fortunately BiPAP has been much, much easier for me, and I now DO feel at least marginally better on BiPAP than pre-CPAP most days and on some days I feel substantially better than I did back four years ago pre-CPAP.
It take your point that matters could be better and should be. I'm sure that many specialists would love to see such improvements. I don't for one moment believe that most are indifferent etc.
Back during the darkest dark days of my very prolonged and very difficult adjustment to therapy, Jim, a good friend who is also a doctor, and my husband were talking about my very significant health problems that started grow out of control once I started CPAP therapy. Jim told my hubby that a big part of my problem was that "Most doctors are like mechanics. They want to fix the one body part or disease they specialize in treating and they want to treat the problem in the standard way to fix it without doing any real thinking about how that treatment affects anything other than the thing they specialize in. And right now Robin has a bunch of different mechanics. But Robin needs a 'gardener'. Gardeners look at the whole garden and focus on how to make the whole garden better and not just one part of the garden; gardeners realize that a change here or there affects the whole garden and not just the immediate thing you're working on. Robin needs a doctor who needs to look at her as a whole human being rather than a condition to be treated. And she needs a doc who realizes that all of her problems and treatments are interconnected. She needs a doc or PA who understands that what ever you do for the OSA and CPAP adjustment affects the insomnia; whatever you do for the insomnia affects the OSA and CPAP adjustment and the headaches; and the headaches; and whatever you do for the headaches affects the insomnia and the OSA and CPAP adjustment. But docs who are gardeners instead of mechanics are pretty hard to find."

It took a long time to find my "gardner", but finding my the gardner(s) is what finally got me back into the world of the living rather than the half dead.

_________________
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Re: Is CPAP a scam of sorts? - my story

Post by robysue » Sat Jun 07, 2014 2:15 pm

avi123 wrote:your situation could have been solved by checking your oxygen blood saturation with a pulse oximeter on your finger (which costs about $80). Just checking your oxygen saturation while asleep for a few hours without the chinstrap and next with the chinstrap. Your saturation rate need to be above 90% most of the time. Apparently, you did not pay attention to posts on this website! It is your fault!
Not in my case:

On my diagnostic sleep study there were NO clinically significant O2 desats. There's more to untreated OSA than the O2 desaturations and you CAN have apneas and hypopneas that result in arousals before the desaturation occurs.

_________________
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Re: Is CPAP a scam of sorts? - my story

Post by Todzo » Sat Jun 07, 2014 2:23 pm

I think it is worth mentioning that I did not say CPAP was a scam[1].
robysue wrote:
Todzo wrote: It's current implementation:

1. Failure to do unbiased research into how usable CPAP is (and is not) and to present the results of that research to the customer so that the customer can make an informed decision.
2. Sleep studies done in the lab (at great expense) rather than the home. Bad science since we do not sleep in the lab. Bad science since we sleep different every night (you need several nights to really know but the extreme expense...). Bad science since the expense of the test hampers sleep.
3. Titration done in the lab. Same basic issues as with sleep studies. To be effective titration needs to be ongoing. I believe it is best to make small changes at home and use the home gathered data to determine if further changes are needed. But then you would need to see that the data was monitored...
4. Failure to educate the customer regarding the limitations of CPAP regarding usability and expected results.
5. Failure to educate the customer as to how to use and get used to CPAP.
6. Failure to monitor how the customer is doing with CPAP as time goes by. The body will change the therapy must also change to be effective but it does not happen.
7. Blaming the customer when CPAP fails in spite of the fact that it does not treat many of the causes of sleep apnea and actually exacerbates some of the nonanatomic causes[1,2].
Blaming the SYSTEM does not make the therapy a scam. It means that the SYSTEM needs to be changed.

Saying "CPAP is a scam" indicates that CPAP is an unscientific and ineffective treatment for OSA for all patients. The calling a proposed therapy a "scam" is the equivalent of calling it "snake oil".
but I never did say that CPAP was a scam so why imply that I did???
robysue wrote:And any way you look at it, the scientific data demonstrate that CPAP is effective at treating OSA in large numbers of patients with OSA; it's far more effective than many other commonly accepted medical therapies for other conditions. So CPAP is definitely NOT a scam.
As I have looked into various medical interventions I am amazed how many fall into the same range of effectiveness as placebo.
robysue wrote:The problem you describe is with the SYSTEMATIC way docs and DMEs interact with OSA patients, and I strongly agree that the SYSTEM is indeed badly broken.
Well there is some bad science mentioned as well. But yes we do agree that the way CPAP is currently implemented is very broken.
robysue wrote: And one part of that badly broken SYSTEM is how docs and DMEs interact with patients who do turn out to be genuine non-responders to CPAP therapy.
So which of the nonanatomic causes of sleep apnea[2,3] do you blame for them becoming non responders?
robysue wrote: There are also a lot of problems in the SYSTEM with how docs and DMEs interact with people who respond to PAP, but not in the anticipated way and there are problems in the SYSTEM with how doc and DMEs interact with newbies who are struggling to become compliant in the first place.
Oh that the newbies would be properly educated!!
robysue wrote:But CPAP is NOT the only commonly prescribed therapy for a chronic medical condition with a very high rates of "non-compliance" and "non-adherence" and "non-persistence" from the patients. Two other common chronic medical conditions with high rates of non-compliance/adherence/persistance are glaucoma and high blood presssure:
  • From Adherence and Persistence with Glaucoma Therapy published in the medical journal SURVEY OF OPHTHALMOLOGY come two remarkable statements concerning patient adherence/compliance with long term drug therapy for managing glaucoma and high blood pressure:
    • "Recent research brings the unwelcome conclusion that persistence with initial glaucoma medication is as low as 33--39% at 1 year" (page S58 and footnoted with several sources for this statistic)
    • In U.S. studies of prostaglandin analogs, the adherence rate for glaucoma eyedrops is similar to that for hyperten- sion pills, a disturbing 70% over time.
  • From Medscape comes this statement with respect to a large study of glaucoma patients adherence to therapy:
    • "The overall mean and median rate of medication compliance were 52% and 57%, respectively. But this overall picture did not accurately reflect the real situation, the researchers believe. They found that the data were bimodal in terms of the MPR: 27% of the patients were poorly compliant, 31% were fairly complaint, and 31% were highly compliant"
  • Long term high blood pressure management is also problematic. From Medication Adherence and Persistence in Hypertension Management we get this statement"
    • "Rates of nonadherence to antihypertensive medications range from 9% to 37%, while nonpersistence has been found to occur at even higher rates (30% to 50%) in patients 12 months after the initiation of antihypertensive therapy."
  • In After the Diagnosis: Adherence and Persistence With Hypertension Therapy
    • "It is believed that poor adherence to therapy contributes to lack of good BP control in more than two thirds of people living with hypertension.6 As many as half of all patients who use antihypertensive drugs have been found to discontinue treatment within follow-up periods ranging from 6 months to 4 years.[7-10]"
So are we to conclude that glaucoma and high blood pressure therapies are scams because large numbers of people who are prescribed these therapies do not manage to become compliant with the prescribed therapy? Should we assume the problem is these therapies are ineffective in large numbers of people because way too many people quit taking the prescribed drugs for a multitude of reasons? Or are the therapies are effective for most people if they can adhere to the therapy in the long run, but the problem is becoming compliant/adherent to therapy in the first place?

Of course, one big difference is that that the docs who are working on improving patient adherence/compliance/persistence with glaucoma and high blood pressure therapies openly acknowledge the problems their patients face with becoming and staying compliant, and they might not so quick to use "blame the patient" language as the sleep docs who treat us seem to be.

Of course, another difference between (glaucoma and high blood pressure) and OSA is that there are other medications out there if a particular patient has a very bad response to a particular medication. And unfortunately, right now, there don't seem to be any alternative treatments for OSA that have been demonstrated to be highly effective for large numbers of people with severe OSA except, of course, for doing a trach on the person.
again I never said that CPAP is a scam[1]
robysue wrote:But research into alternatives is taking place. For example, well fitted oral appliances have been proven to be highly effective in many, but not most for people in the mild and mild-to-moderate range. The tongue-zapper that's being developed may indeed eventually revolutionize how OSA is treated, but right now, it's effective only if the person has one well defined problem area that causes the collapse of the airway and has significant potential risks associated with it as well as a significant price tag.
I look forward to a time where our diagnoses of Sleep Apnea is complete enough to understand which of or how many of our tools can be used to truly resolve the issues that are present.
robysue wrote:It would be nice if more research were being done into making xPAPs more comfortable and more tolerable.
It is. But the politics are hampering the processes.
robysue wrote: And it would be really nice if part of that research did include figuring out why some people do respond so badly to CPAP in spite of being fully compliant with good efficacy data numbers.
yup
robysue wrote: It would also be nice to see further research into why some people do go on to develop real problems with centrals once they start CPAP.
yup
robysue wrote: It would also be nice to see additional research into determining which patients would benefit from using a bi-level or ASV even if all they've "technically" have is plain old OSA.
yup
robysue wrote: And of course, it would be very useful if the differences between UARS and OSA were better understood and if some studies could definitively answer the question of "What's the best thing to do for a person with UARS?"
yup (but with the politics they are still at “does UARS exist?”)
robysue wrote:But much more immediate, it would highly useful if the sleep medicine community would get serious about implementing quality patient education programs and patient support programs, because there have been a number of studies done that show these two things WOULD go a long way towards increasing the overall compliance rates for CPAP.
Which means they would have to care and too many of them very clearly do not!!

If you care about people you do not scam them. If you care about people with sleep apnea then you update the processes. If you care about people with sleep apnea you find out why they have trouble using the device you just sold them on rather than prevent the research which would show how much trouble they are having and why.

And for crying out loud you do not blame them for having trouble using the equipment you just sold them (or proscribed for them)!!!


[1] Original Post:

CPAP is a product that can work for some people.

It's current implementation:

1. Failure to do unbiased research into how usable CPAP is (and is not) and to present the results of that research to the customer so that the customer can make an informed decision.
2. Sleep studies done in the lab (at great expense) rather than the home. Bad science since we do not sleep in the lab. Bad science since we sleep different every night (you need several nights to really know but the extreme expense...). Bad science since the expense of the test hampers sleep.
3. Titration done in the lab. Same basic issues as with sleep studies. To be effective titration needs to be ongoing. I believe it is best to make small changes at home and use the home gathered data to determine if further changes are needed. But then you would need to see that the data was monitored...
4. Failure to educate the customer regarding the limitations of CPAP regarding usability and expected results.
5. Failure to educate the customer as to how to use and get used to CPAP.
6. Failure to monitor how the customer is doing with CPAP as time goes by. The body will change the therapy must also change to be effective but it does not happen.
7. Blaming the customer when CPAP fails in spite of the fact that it does not treat many of the causes of sleep apnea and actually exacerbates some of the nonanatomic causes[2,3].

Is worthy of being called a scam.

[2] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC

[3] Sairam Parthasarathy M.D., Emergence of Obstructive Sleep Apnea Phenotyping. From Weak to Strong! American Journal of Respitory and Critical Care Medicine VOL 188 2013
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Re: Is CPAP a scam of sorts? - my story

Post by Visitor » Sat Jun 07, 2014 3:01 pm

Hi Robysue,

A situation where research is no longer continued is a dangerous route. I'm amazed that early studies have not been followed up by further investigations. Clearly the questions you raised need to be answered.

I'm glad that you found help that did make some difference. It is immensely frustrating to be in that situation, and to know what is wrong, yet find no improvement.

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Re: Is CPAP a scam of sorts? - my story

Post by robysue » Sat Jun 07, 2014 3:13 pm

Visitor wrote:Hi Robysue,

A situation where research is no longer continued is a dangerous route. I'm amazed that early studies have not been followed up by further investigations. Clearly the questions you raised need to be answered.
Some research does continue. But it is not geared towards establishing the validity of CPAP as a therapy for OSA anymore.

There's actually quite a bit of research being done into alternate treatments for OSA. And there's ongoing research into how to make PAP more comfortable for patients. And there's research that has established that quality patient education and support makes a difference difference in getting patients to become fully adherent to therapy and stay adherent in the long run. Unfortunately that research has not yet percolated down to creating real change at the ordinary patient/sleep doc level.

But docs who are actively engaged in clinical research are NOT that common. Most docs just want to be doctors---they want to help their patients using techniques that others have thoroughly investigated and they're just not into trying to do the clinical research itself.

_________________
Machine: DreamStation BiPAP® Auto Machine
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Re: Is CPAP a scam of sorts? - my story

Post by Todzo » Sat Jun 07, 2014 5:30 pm

robysue wrote:

Studies HAVE shown that for folks with severe OSA, nightly use of CPAP DOES decrease the risk of a whole host of co-morbidities including
  • Stroke
  • Heart disease
  • Diabetes
citations please
robysue wrote: Back during the darkest dark days of my very prolonged and very difficult adjustment to therapy, Jim, a good friend who is also a doctor, and my husband were talking about my very significant health problems that started grow out of control once I started CPAP therapy. Jim told my hubby that a big part of my problem was that "Most doctors are like mechanics. They want to fix the one body part or disease they specialize in treating and they want to treat the problem in the standard way to fix it without doing any real thinking about how that treatment affects anything other than the thing they specialize in. And right now Robin has a bunch of different mechanics. But Robin needs a 'gardener'. Gardeners look at the whole garden and focus on how to make the whole garden better and not just one part of the garden; gardeners realize that a change here or there affects the whole garden and not just the immediate thing you're working on. Robin needs a doctor who needs to look at her as a whole human being rather than a condition to be treated. And she needs a doc who realizes that all of her problems and treatments are interconnected. She needs a doc or PA who understands that what ever you do for the OSA and CPAP adjustment affects the insomnia; whatever you do for the insomnia affects the OSA and CPAP adjustment and the headaches; and the headaches; and whatever you do for the headaches affects the insomnia and the OSA and CPAP adjustment. But docs who are gardeners instead of mechanics are pretty hard to find."

It took a long time to find my "gardner", but finding my the gardner(s) is what finally got me back into the world of the living rather than the half dead.
I think the “too many specialists with no general practitioners” thing starts with way we do science. Our approach to science is almost totally reductionist. Take one thing, change one variable, look for a change in the one thing.

So as we ignore the fact that we are a massively interactive biological entity (us within ourselves) who is interacting in a very very massively interactive world we also create a culture of very much over paid people who are experts at one thing. They cannot even communicate with other experts on other one things. The whole thing is massively fragmented to the point of almost complete ineffectiveness.

We need to reduce the pay to the singular expert and raise the pay for the gardner(s).
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