Thanks to All, and a Question

[JQLewis]

Today I received approval from my insurance company for a new CPAP machine to replace the brick I currently have. It took me four months, and I couldn't have done it without the help and guidance I received here, so thank you to everyone who assisted me and to the folks who put this board together.

As to the question, I recently read a statistic which I took to be a guess, really. It said that there were probably 18 million people in the USA who suffer from sleep apnea and that only 25% of them have so far been diagnosed. Do you believe it, and if so, what do you think that says about the current state of sleep medicine?

[kteague]

Well, I'm not a statistician and have no idea on the credibility of the reported percentages, but on a smaller scale, let's say I consider my family, extended family, and fairly close circle of contacts. I know of 9 who were diagnosed and use CPAP, 3 who were diagnosed and chose surgery, 5 that I am absolutely certain need to but they refuse to be tested (I've observed them sleeping), and 2 that are suspect based on their own description of symptoms. Let's estimate that those numbers come from a group of 60. Wonder how my numbers stack up against the U.S. estimates? In my circle, the proportion of undiagnosed seems greater than what's reported. However, I can't fault the sleep industry, as every one in my numbers who is undiagnosed is aware they likely have sleep apnea but have decided for whatever reasons (most for vanity sake) not to be tested because they've already decided they won't wear a mask. Maybe public awareness of the seriousness is lacking. From personal experience, awareness among primary care physicians is lacking, but my experience with that is nearly 10 years ago so things might be changing.

[JQLewis]

Well, I'm not a statistician and have no idea on the credibility of the reported percentages, but on a smaller scale, let's say I consider my family, extended family, and fairly close circle of contacts. I know of 9 who were diagnosed and use CPAP, 3 who were diagnosed and chose surgery, 5 that I am absolutely certain need to but they refuse to be tested (I've observed them sleeping), and 2 that are suspect based on their own description of symptoms. Let's estimate that those numbers come from a group of 60. Wonder how my numbers stack up against the U.S. estimates? In my circle, the proportion of undiagnosed seems greater than what's reported. However, I can't fault the sleep industry, as every one in my numbers who is undiagnosed is aware they likely have sleep apnea but have decided for whatever reasons (most for vanity sake) not to be tested because they've already decided they won't wear a mask. Maybe public awareness of the seriousness is lacking. From personal experience, awareness among primary care physicians is lacking, but my experience with that is nearly 10 years ago so things might be changing.

The state of sleep medicine is obviously a very complex subject. My experiences so far and the fact that I am likely faced with dealing with the wonderful world of sleep doctors and DMEs for the rest of my life make me more than a little concerned, however. I'm trying to get my head around it. I know my anecdotal experiences mean very little, but what statistics I've seen are a bit scarey. People here have been dealing with this for years, so I wanted to get some more enlightened points of view.

I always think back to my parents and their attitudes towards seat-belts. When I was a kid neither of my parents used seat belts. My dad thought they were a nuisance and my mother complained they wrinkled her clothes. Then public service ads started running showing crash test dummies flying through windshields, and implying that you were putting your children at risk. Before too long we were all wearing seat-belts. After attitudes changed, the mandatory seat-belt laws followed, and a lot of lives were saved. Education can work wonders on people's attitudes.

[chunkyfrog]

If you consider the fact that untreated OSA is related to depression, heart disease,
diabetes, and traffic accidents, just to name a few;
I feel the estimate may be a bit conservative.

[wardmiller]

As to the question, I recently read a statistic which I took to be a guess, really. It said that there were probably 18 million people in the USA who suffer from sleep apnea and that only 25% of them have so far been diagnosed. Do you believe it, and if so, what do you think that says about the current state of sleep medicine?

The National Sleep Foundation estimates more than 18 people in the U.S. have OSA. The American Sleep Apnea Association estimates 22 million, with 80% undiagnosed.

So the 18 million you read is probably as good a number as any. That's 5 or 6% of the U.S, adults and children.

[JQLewis]

Well, I'm a newbie to the ranks of the diagnosed, and I certainly have a great deal to learn, but everything I have learned so far about how patients are treated has been shocking to me. I should be a twenty year veteran of sleep apnea treatment because that was when I first sought medical help for my terrible sleep problems. I must have consulted a dozen different doctors over the twenty years and I wound up getting told I had OSA by accident. I've been to the National Sleep Foundation and the American Sleep Apnea Association websites and I can't figure out just what these groups do. I could not find a single one of the many shocking issues I've confronted so far discussed on their sites. I don't want to be unfair to them, but my impression is that the millions of diagnosed and undiagnosed patients deserve better treatment and better advocacy. It's hard for me to accept that the blame belongs to the patients, rather than to the medical establishment.

[Tatooed Lady]

And just so we're straight...94.37% of statistics are made up on the spot.

[JQLewis]

And just so we're straight...94.37% of statistics are made up on the spot.

Now that stat I do believe. Lies, damned lies and statistics, as the phrase goes. Still, the best lies have a core of truth to them. It's a confidence game and you have to provide something for people to hang their confidence on.

18 million undiagnosed or twenty two million. Both may be inflated figures designed to grab attention, but I do believe in the basic premise. I also believe that it's one of waaaay too many problems plaguing the practice of sleep medicine. I think most of these problems can be laid at the doorstep of sleep medicine being a relatively new field, but personally I wish it would grow up a little faster.

[robysue]

It said that there were probably 18 million people in the USA who suffer from sleep apnea and that only 25% of them have so far been diagnosed.

Estimates like this are based on epidemiology studies. The rates of OSA in populations such as "women with BMI > 30" or "men with congestive heart failure" are relatively easy for epidemiologists to establish with a fair amount of accuracy. And obesity and heart disease rates in the population are also rather straightforward to establish. And then it's simply a matter of computing the percentage of the population at very, very high risk of OSA and using that and the fact that the US population is about 315 million to come up with the total estimate of how many people are likely to suffer from OSA. (An aside, if 18 million Americans have OSA, that means the overall incidence of OSA is about 5.7% of the population: Given the large rates of obesity in the country and the very strong correlation between obesity and OSA, an overall OSA incidence of 5.7% is a reasonable figure.)

A very thorough, scientific article about how the prevalence of OSA can be established is found at Epidemiology of Obstructive Sleep Apnea: a Population-based Perspective, which is available on the NIH web pages.

Once you know the estimated number of OSA sufferers, it's rather easy to figure out how many of the OSA sufferers have been diagnosed: Look at the number of sleep tests performed and the number of CPAPs prescribed over a long period of time.

Do you believe it, and if so, what do you think that says about the current state of sleep medicine?

I find the figure believable.

As for what it says about the current state of sleep medicine? I think sleep medicine is still in its infancy. And I think we are only at the very beginning of primary care medicine starting to routinely consider sleep apnea as an important cause for a number of conditions that primary care physicians routinely see, screen for, and treat. And PCPs are the gatekeepers: If a PCP is unwilling to order a sleep test, it can be impossible to get the proper referral to a sleep specialist and to get your insurance to pay for it. As PCPs become more informed about the wide-ranging implications of untreated OSA, the number of people diagnosed with OSA is likely to increase. And (hopefully) as the number of people diagnosed and treated for OSA increases, the negative aspects of PAP therapy may start to be addressed.

[M'ohms]

What I want to know is why, all of a sudden, so many people are being diagnosed with sleep apnea? It wasn't too long ago that we never heard of sleep apnea. Kinda makes me wonder...

[JQLewis]

As for what it says about the current state of sleep medicine? I think sleep medicine is still in its infancy. And I think we are only at the very beginning of primary care medicine starting to routinely consider sleep apnea as an important cause for a number of conditions that primary care physicians routinely see, screen for, and treat. And PCPs are the gatekeepers: If a PCP is unwilling to order a sleep test, it can be impossible to get the proper referral to a sleep specialist and to get your insurance to pay for it. As PCPs become more informed about the wide-ranging implications of untreated OSA, the number of people diagnosed with OSA is likely to increase. And (hopefully) as the number of people diagnosed and treated for OSA increases, the negative aspects of PAP therapy may start to be addressed.

I agree about sleep medicine being in its infancy and the central role that PCPs need to play. I'm not sure what the precise mechanisms are which can help bring about a change in the ways that PCPs operate. I'm also uncertain whether this will affect the way that sleep specialists and other entities in the sleep medicine chain operate once PCPs do pass their patients along in sufficient numbers.

Certainly patients can neither be absolved of all responsibility to seek treatment nor neglected in their importance in getting conditions to change. When a drug company wants to promote a new treatment they try to create a demand amongst patients. Commercials tout the benefits (and downplay the negatives), then tell the patients to "ask their doctor". Clearly they feel that patients can influence a PCP's decisions. Perhaps it's necessary to create a demand before we can expect PCPs to change.

The list of conditions that need to "grow up" is extensive. What strikes me is how everyone is acting in such a short-sighted manner. Patient compliance will benefit everyone, but what the patient gets is a lot of buck-passing. Neither DMEs nor sleep specialists do an adequate job of educating patients or monitoring therapies, yet they also seem hostile to patients getting involved in monitoring their own conditions. They need to be awakened to the reality that what's best for the patient will make them the most money. Non-compliant patients don't buy replacement supplies from DMEs, nor continue to need the services of sleep doctors. Insurance companies will greatly benefit from improved health outcomes for their customers. Less heart attacks and strokes to pay for. The government needs to wake up to the costs of highway accidents and productivity-hours lost to poor sleep. It's a bit like training a puppy. They need to have their noses gently rubbed in the mess they're creating.