The Undiagnosed Millions

When I was a kid neither of my parents used seat-belts, and they didn't care whether my brother and I used them either. My mother thought they would wrinkle her clothes and my father thought they were an insult to his skills as a driver. Then public service announcements started, which showed crash-test dummies flying through windshields, and which implied people were putting their children at risk. The next thing you knew, we were all wearing seat-belts. After attitudes changed, mandatory seat-belt usage laws followed, but the attitude of the public had to change first.

Perhaps something similar is needed with regards to OSA? I think the foundation of such efforts is usually enlightened citizens. Institutions and politicians are followers. They won't change unless they're forced to change.

JQLewis wrote:When I was a kid neither of my parents used seat-belts, and they didn't care whether my brother and I used them either. My mother thought they would wrinkle her clothes and my father thought they were an insult to his skills as a driver. Then public service announcements started, which showed crash-test dummies flying through windshields, and which implied people were putting their children at risk. The next thing you knew, we were all wearing seat-belts. After attitudes changed, mandatory seat-belt usage laws followed, but the attitude of the public had to change first.

Perhaps something similar is needed with regards to OSA? I think the foundation of such efforts is usually enlightened citizens. Institutions and politicians are followers. They won't change unless they're forced to change.

Should this start with doctor's offices since they still greatly appear to be missing folks who have symptoms that scream OSA? Another thought is many times when I am in the waiting room of a doctor's office, there is some medical program running on a TV screen about various conditions. Would there be a way to get OSA mentioned?

Janknitz wrote:Most people would rather die the slow and painful death rather than face a lifetime of sleeping in a cpap mask, so the manufacturers have to continue to work toward the least obtrusive mask and machine possible.

Meanwhile, doctors need better education on who to refer for sleep studies. They erroneously assume too many people don't "fit the profile" of a middle aged obese male with a big neck.

And testing has to be streamlined. Expensive, time consuming, and low volume sleep lab testing will not work. I truly believe home testing with a simple unit and home titration with adequate support is the only way to address this on a large scale.

I had the opposite problem. My doctor referred me to a sleep specialist who took one look at me and said I did not fit the profile! He did not think I had sleep apnea. At the time I was a middle aged female with a 13 inch neck. Turns out I have severe sleep apnea.

From the people I know who need a sleep study and possible treatment one thing holding them back is the study itself. They say,"oh I can't do that! I can't sleep with all that stuff on me or have stranger watching me sleep!"

Another reason people have is denial. The "I only snore, I don't have sleep apnea!"

Home testing might be a way to go for many.

Sleep doctors just seem to FIND if we have OSA, they don't follow through to fix it - mostly because the DME is a different outfit. So not only is there less diagnosis there is a low level of long term success.

I would agree that if you want to get people diagnosed or even aware that they may have sleep apnea, we need to both a) make people aware of what the symptoms are (while busting myths about snoring and weight) and b) get doctors to give a **** enough to listen when people bring them up and not dismiss them.

I have been through the multi-decade misdiagnosis game with multiple diseases (diabetes, celiac, endometriosis and now sleep apnea). My opinion of the medical machine is pretty darn low... So +1 to the idea of not requiring a prescription for a xpap machine. Let's just say I had to get 'creative' to purchase my current machine, which should not have been necessary.

englandsf wrote:Sleep doctors just seem to FIND if we have OSA, they don't follow through to fix it - mostly because the DME is a different outfit. So not only is there less diagnosis there is a low level of long term success.

This "pass the buck" mentality, where docs claim the DME is responsible for your healthcare, is bizarre to me. I've also been, as Stevie Wonder said, "amazed, but not amused" at how doctors, after I was finally diagnosed, have claimed that they would have been able to do a better job of diagnosis. Monday morning quarterbacks.

daytona wrote:So +1 to the idea of not requiring a prescription for a xpap machine. Let's just say I had to get 'creative' to purchase my current machine, which should not have been necessary.

The Rx problem is just one of a laundry list of problems which don't seem to be getting serious discussion. I don't think things will change unless a means is found to rub the establishment's little puppy noses in the mess they've created. These entities are not immune to embarrassment, though. Shed enough light on these practices and they will be forced to change.

JQLewis wrote:I've posted before about the figures I've seen regarding the prevalence of OSA in the United States. Estimates for the number of undiagnosed OSA sufferers range from 18-30 million people. What do you think should be done about this? Do you think there are any worthwhile efforts to address this problem?

I pretty much diagnosed myself - told my GP that I thought I was a CPAP candidate, she gave me a questionnaire that agreed, sent me to respiratory doctor and sleep study and they agreed, got my machine.

So what can be done about it? Awareness. Take away the stigma. Promote the effectiveness of treatment. Show it's the smart thing to do. That's what made me go - I kind of knew I had a problem, had a family history of apnea; but didn't go in until I found out more about the health risk and got over my aversion to sleeping with a machine.

Colonoscopies aren't sexy either, but people understand them a lot better now.

sc0ttt wrote:So what can be done about it? Awareness. Take away the stigma. Promote the effectiveness of treatment. Show it's the smart thing to do. That's what made me go - I kind of knew I had a problem, had a family history of apnea; but didn't go in until I found out more about the health risk and got over my aversion to sleeping with a machine.

I can't think of an instance where such a change has occurred where it wasn't the result of efforts from individuals and grassroots organizations. Who is doing that for OSA? The ASAA hasn't posted a newsletter regarding their activities for two years. Maybe they're doing wonderful work, but I haven't been able to find out what it is.

It's been a real education since I got diagnosed with OSA. Unfortunately, everything I've learned has been bad, and now that I'm trying to find out what's being done to turn things around, the answer seems to be, well nothing much.