Is CPAP a scam of sorts? - my story

[Bigjamesian@yahoo.com]

Doctors and nurses laugh so many patients dont use their CPAP. If the medication worked dont you think more would use it? #Lawofnumbersspeaksloudly

[poorflick]

Dme told me, the other day, that a lady, new to cpap, told him that she gets her hair done every week and for two days after getting it done she doesnt use her machine because she doesnt want to mess up her hair. He told her that she was going to be a lovely corpse. Lmao! Okay, this doesnt add anything to this discussion but its an old thread anyway...

[friar]

What doesn't kill me, I am sure it has a "Plan B"

[chunkyfrog]

Apnea is real.
It is self destructive to ignore it,
No, make that suicide.
Just.
Grow
Up.

[Goofproof]

What doesn't kill me, I am sure it has a "Plan B"

Plan "B", Could be a stroke or worse. This is one time the saying has little merit. Die quick or by inches, choices, choices!

[mols001]

I don't think CPAP is a scam. I have seen many people get healthy after
being on CPAP and their lives have changed. I just started CPAP and notice I feel better
and my health is better, so I believe it works. I do believe you have to have the right
Sleep center and DME company. Some Respiratory therapists, especially the ones right out of
school don't know as much as the RT's who have been doing CPAP for years, so it is best
to find a good DME company with experiences Respiratory Therapists.

[Visitor]

CPAP is a pain, but not a scam.

Imagine someone holding your nose and closing your mouth at night, making you struggle for air several times an hour up to once a minute or more--every single night. It makes you cranky, costing concentration, and makes you fall asleep behind the wheel. Worse, it grinds down your health over the years. Many only discover that they have problems because their partner is concerned that they stop breathing in their sleep and struggle for air.

No one in their right mind wants to wear a mask at night unless they get clear benefits from it. The benefits are that the above symptoms disappear by using a very simply invention. It's a pain to use the treatment. If I could, I would leave the damn thing in the dumpster. But it's changing my life after a long time of not being diagnosed and wondering what on earth was going wrong.

It is a common sense solution to a clear problem. I'm a scientist, and I'm damn glad that CPAP exists. Some might read the title of this thread and draw the wrong conclusion. CPAP is a simple solution to a common problem. It's not a treatment for "snoring", it's a treatment for a serious condition. If you don't have it, great. If you do, it is wonderful to have an option. I was lucky to know that I had great health, was in great shape and did not have undue stress before apnea started getting the better of me, so I kept looking for a reason for the strange change in my condition. It was a long road and I regret the time I've lost feeling terrible, and struggling to manage. We all must soldier on, but using CPAP has changed my life for the better. And forums like these are filled with people who fight very hard, every night, to make the treatment work.

[Todzo]

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)--

[robysue]

Is worthy of being called a scam.

Prior to the invention of CPAP, the problem of obstructive sleep apnea was largely left untreated because there simply was not an effective way to treat it that was also relatively low risk. If someone's OSA was life threatening in an immediate sense, about the only thing they could do was to put in a trach. But except for those with the severest of severe OSA, risk/benefit analysis was in favor of "do nothing except tell people to try to not sleep on their backs" and "lose weight" if the patient was overweight. So the vast majority of OSA sufferers simply had to live with their symptoms of extreme exhaustion, excessive daytime sleepiness, crankiness, and daily headaches and pain.

The first CPAP machines were large (as compared to today's machines) and noisy. They were also more expensive in terms of inflation adjusted $$ and they gathered no efficacy data; heck at the start they didn't even record usage. The masks were also much more uncomfortable. Hence, the cost/benefit analysis indicated that only those with severe OSA should be put on CPAP. Everybody else was still left untreated except for being told "don't sleep on your back" and "lose weight" if they were overweight.

As the machines and masks have continued to improve and the cost has gone down and as the increasing risks of untreated OSA have become better understood, there has been a real push towards telling all OSA patients to try CPAP right from the start. But of course, now that folks with moderate and mild OSA are routinely urged to try CPAP, there is a much larger patient pool. And with that larger patient pool comes a much larger risk that some (many) patients won't respond well to CPAP at the beginning. Much of the time, the problem really is nothing more than whether the patient regards PAP as too much of a nuisance to deal with or regards PAP as deeply uncomfortable to sleep with. (Both problems can be addressed, but not eliminated, with quality patient support and education; but quality patient education and support is in short supply it seems) 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.

But the existence of a small number of "non-responders" and a much larger group of "CPAP abandoners" does NOT mean that CPAP is a scam: CPAP* remains the best, most effective treatment for OSA except for getting a trach put into your throat.

*Note: In this last use of CPAP, I really mean all of CPAP and APAP and bi-level and auto bi-level.

[49er]

RobySue,

With all due respect, I think the number of "true" non responders is more than just a very small number. Unfortunately, we will never know what the true statistics look like because the medical profession in many areas tends to minimize the difficulties of people who have trouble with various therapies and wants to just blame the patient for non compliance without truly investigating what is going on.

49er

Is worthy of being called a scam.

Prior to the invention of CPAP, the problem of obstructive sleep apnea was largely left untreated because there simply was not an effective way to treat it that was also relatively low risk. If someone's OSA was life threatening in an immediate sense, about the only thing they could do was to put in a trach. But except for those with the severest of severe OSA, risk/benefit analysis was in favor of "do nothing except tell people to try to not sleep on their backs" and "lose weight" if the patient was overweight. So the vast majority of OSA sufferers simply had to live with their symptoms of extreme exhaustion, excessive daytime sleepiness, crankiness, and daily headaches and pain.

The first CPAP machines were large (as compared to today's machines) and noisy. They were also more expensive in terms of inflation adjusted $$ and they gathered no efficacy data; heck at the start they didn't even record usage. The masks were also much more uncomfortable. Hence, the cost/benefit analysis indicated that only those with severe OSA should be put on CPAP. Everybody else was still left untreated except for being told "don't sleep on your back" and "lose weight" if they were overweight.

As the machines and masks have continued to improve and the cost has gone down and as the increasing risks of untreated OSA have become better understood, there has been a real push towards telling all OSA patients to try CPAP right from the start. But of course, now that folks with moderate and mild OSA are routinely urged to try CPAP, there is a much larger patient pool. And with that larger patient pool comes a much larger risk that some (many) patients won't respond well to CPAP at the beginning. Much of the time, the problem really is nothing more than whether the patient regards PAP as too much of a nuisance to deal with or regards PAP as deeply uncomfortable to sleep with. (Both problems can be addressed, but not eliminated, with quality patient support and education; but quality patient education and support is in short supply it seems) 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.

But the existence of a small number of "non-responders" and a much larger group of "CPAP abandoners" does NOT mean that CPAP is a scam: CPAP* remains the best, most effective treatment for OSA except for getting a trach put into your throat.

*Note: In this last use of CPAP, I really mean all of CPAP and APAP and bi-level and auto bi-level.

[LSAT]

CPAP is a produce that can work for some people.

-

Is that something like lettuce?

[BlackSpinner]

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. A Nigerian email promising you millions is a scam. Snake oil to re grow hair is a scam. 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.

[BlackSpinner]

CPAP is a produce that can work for some people.

-

Is that something like lettuce?

Unless you are in Colorado.

[49er]

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. A Nigerian email promising you millions is a scam. Snake oil to re grow hair is a scam. 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.

Thanks BS, I was trying to come with a similar type point but my brain was failing me. So I greatly appreciate this post.

49er

[Todzo]

What a complete mischaracterization of my post[1]!!

An honest quote would be:

CPAP is a product that can work for some people.

It's current implementation is worthy of being called a scam.

Is worthy of being called a scam.

Prior to the invention of CPAP, the problem of obstructive sleep apnea was largely left untreated because there simply was not an effective way to treat it that was also relatively low risk. If someone's OSA was life threatening in an immediate sense, about the only thing they could do was to put in a trach. But except for those with the severest of severe OSA, risk/benefit analysis was in favor of "do nothing except tell people to try to not sleep on their backs" and "lose weight" if the patient was overweight. So the vast majority of OSA sufferers simply had to live with their symptoms of extreme exhaustion, excessive daytime sleepiness, crankiness, and daily headaches and pain.

The first CPAP machines were large (as compared to today's machines) and noisy. They were also more expensive in terms of inflation adjusted $$ and they gathered no efficacy data; heck at the start they didn't even record usage. The masks were also much more uncomfortable. Hence, the cost/benefit analysis indicated that only those with severe OSA should be put on CPAP. Everybody else was still left untreated except for being told "don't sleep on your back" and "lose weight" if they were overweight.

As the machines and masks have continued to improve and the cost has gone down and as the increasing risks of untreated OSA have become better understood, there has been a real push towards telling all OSA patients to try CPAP right from the start. But of course, now that folks with moderate and mild OSA are routinely urged to try CPAP, there is a much larger patient pool. And with that larger patient pool comes a much larger risk that some (many) patients won't respond well to CPAP at the beginning. Much of the time, the problem really is nothing more than whether the patient regards PAP as too much of a nuisance to deal with or regards PAP as deeply uncomfortable to sleep with. (Both problems can be addressed, but not eliminated, with quality patient support and education; but quality patient education and support is in short supply it seems) 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.

But the existence of a small number of "non-responders" and a much larger group of "CPAP abandoners" does NOT mean that CPAP is a scam: CPAP* remains the best, most effective treatment for OSA except for getting a trach put into your throat.

*Note: In this last use of CPAP, I really mean all of CPAP and APAP and bi-level and auto bi-level.

[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)--