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Medical policy and standards
Hi again, my first post was really long, and I have more I’m interested in feedback on. This is my observations and questions about policy related to sleep apnea.

While I’m new to learning about sleep apnea, I’m not new to navigating the healthcare system (and my background is in health policy and healthcare consumer advocacy), and I’m dismayed by what I’ve learned about the diagnosis and management (or not) of sleep apnea. It raises a lot of questions, and it seems that the healthcare system (in the US at least, and apparently elsewhere) needs a better approach to identifying, diagnosing and treating patients.

I’ve read that an estimated 90% of people with sleep apnea are not diagnosed. And I’ve read about people being misdiagnosed for years or having to do multiple sleep studies to get diagnosis and treatment. It seems that many people are diagnosed after having other complications (e.g. heart failure).

It also seems that the current system wastes resources that could be better spent in treating people for less money (e.g. for some individuals with probable OSA, a trial with auto cpap to get data rather than require sleep study might make more sense, and would be much less expensive than sleep study). It also seems that making detection and treatment easier would also save money by avoiding long-term problems associated with other conditions that apnea has contributed to or caused.

I think sleep apnea screening (not sleep study) should be a routine screening for people meeting certain criteria (maybe age-based intervals, and also for those with risk factors). If it is not recommended as a routine screening by US task force on health, it should be. That would also raise awareness in the primary care setting.

I’m not sure why sleep studies are apparently the only way to diagnosis sleep apnea. Some people can’t sleep in them. We need alternate way to identify the condition and begin treatment for people. I think there is wide recognition by patients of the current system not working well. Do people (you all, more knowledgeable about sleep apnea that I) see this as something that needs to be changed, and are there any groups advocating for change?

Also, it seems that there are people who obtain cpaps and manage treatment on their own, without support from doctors or health plans. There are obviously some serious issues with the healthcare system for this to be happening. It seems that some investigative reporting could raise issues and help bring about some change. People shouldn’t be having to diagnose and treat themselves, or jump through hoops over months before getting treatment.

It seems that many doctors are uninformed and unaware, and that “sleep doctors” are financially rewarded by current system that requires sleep study, and they are unlikely to support change. It seems that the healthcare system doesn’t have diagnosis and management of sleep apnea right at all. If the healthcare system were doing a better job, more people would be diagnosed and treated, and there would likely be fewer heart attacks and strokes as a result.

WHY do sleep apnea patients have to be put in situation in which they will stop breathing in order to establish diagnosis or to reconfirm diagnosis when changing insurance, when there is technology that can both treat and confirm diagnosis without sleep study? We often treat people with other serious health conditions based on patient report (e.g. seizures – have a seizure and treatment is started (dr doesn’t need to observe seizure), and then testing is done), and we don’t ask people with other serious medical conditions to go off treatment to prove the condition exists for a new insurance company. Imagine if someone using an insulin pump, or who has a pacemaker, being told that their new plan won’t provide support for their device unless they turn it off, give up using it, and it becomes apparent they still need it. That is just ridiculous. Why is it acceptable to ask apnea patients to sleep without device (when they know they will stop breathing) so it can be recorded? I understand that a sleep study is going to monitor other things, but I think some things can be screened for or checked in other ways. I bet a lot of people out there can be “diagnosed” by spouses/partners, and others can be identified just based on symptoms.

As you all know, sleep apnea is a serious condition that can lead to all kinds of harm, including sudden death, but the way we diagnose and treat seems to ignore the urgency of the condition. And people seem so accepting of the sleep study necessity, despite the problems with it, and I don’t understand that.

I’m interested in learning whether there are efforts to bring about change in diagnosing, starting and maintaining treatment for people with sleep apnea. I think some things (like insurance requirement of new sleep study when a person changes insurance) is something that could be addressed legislatively in some states, with organized efforts by patients and condition groups.

(When I see things that are wrong, I try to do something about it. As I'm new to this subject, I am interested in what others think.)

Thank you.
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I understand your argument and motivation, however I think you are missing some key points.
1. a pace maker was never implanted based on the information from a spouse.
2. The need for a pace make IS measured and set based on those measurements.

So if I were in the business and I chose to listen to a spouse for the need for a CPAP machine. Just which kind of CPAP would I prescribe? What would I set it to? Is the patient having Hypopnea's, central's, or obstructive apnea's? Maybe periodic breathing?

" I bet a lot of people out there can be “diagnosed” by spouses/partners" I don't think you can get any of the above answers from this source.

Read a lot more.
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Here some interesting reading from old threads

Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure? http://www.apneaboard.com/forums/Thread-...d-Approach

Not every patients needs to go to the sleep - presentation by professor Barbara Phillips
An interview with the Professor http://www.apneaboard.com/forums/Thread-...a-Phillips
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I agree, apnea diagnosis leaves a lot to be desired. I have had sleep apnea for years. Many people including family members told me that I had a problem and needed a sleep study. I went to my doctor in Houston. For several years he would only offer laser surgery to remove excess throat tissue! I just didn't want to go that route. It wasn't until I had surgery this year in Kansas that the nurses and other professionals indicated that I might have sleep apnea. The told my doctor here in Kansas about this additional problem. A sleep study confirmed severe sleep apnea. My doc prescribed an auto cpap and I have been sleeping well ever since.

I wish I had been given the xPAP option many years ago.....

Sleep is worth the effort.
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Quick question for you: can you identify what is an obstructive apnea from a central apnea just by looking at your loved one?

(I can tell you that the answer to this is no. That's why a sleep study is so important - so you're accurately prescribed what you should be prescribed.)

BTW, all the other health issues you've brought up have diagnostic tests to identify severity and for a proper diagnosis. Why not sleep apnea?
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(09-14-2015, 09:20 PM)ramblingasian Wrote: Quick question for you: can you identify what is an obstructive apnea from a central apnea just by looking at your loved one?

(I can tell you that the answer to this is no. That's why a sleep study is so important - so you're accurately prescribed what you should be prescribed.)

BTW, all the other health issues you've brought up have diagnostic tests to identify severity and for a proper diagnosis. Why not sleep apnea?

In all honesty, knowing the difference between OA and CA yes i can and did tell the difference b watching my wife sleep.
Im not real bright but im as smart as. Chest belt .
She could not sleep thru two studies and still scored a 4.9 on the last one based on 10 min nap she managed.
No go for the "pros" though i can show you ahi of 10 under 6 cm pressure consistantly.
We bought her machine self titrated her to an ahi of under 1 every night now for 8 mos.
Had we not she would still have 125 bpm pulse and host of other apena induced health problems she doesnt now.
If she had had CA we would have dealt with that too. Considering the medical pros couldnt get past their wallets.
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I agree with the above comments that although a person can self diagnose themselves as having sleep apnea, a more definitive diagnosis is required to correctly treat the problem.
This past April I went to my family doctor complaining of morning headaches and he immediately said I had cluster headaches as you yourself mentioned happened to you in another post. I replied to him that I thought I had sleep apnea and proceeded to tell him some other reasons why I thought that, and much to my surprise (probably because what I said had a lot of merit) he then referred me to the sleep clinic.
Yes there needs to be a system overhaul in how patients are diagnosed and perhaps giving the patient options in how this can happen; in a sleep lab, or by a home sleep study which may exist here in Canada, but I've never heard of it here. I also think things should happen quicker as in my case from the time I was referred to a sleep doctor to getting a loaner CPAP machine took 6 months. And it's going to be at least another 2+ months until I have a prescription to buy my own machine. So all in all 8-9 months. I don't know if things happen quicker in the US, but I sure hope so.
Having a spouse diagnose is not a good method. I first told my hubby of my suspicions that I had sleep apnea and his first reaction was to say he didn't think so as he never heard me gasp for air or stop breathing. However after being diagnosed and telling my not-so-young kids about it, my daughter remarked that she had heard me on several occasions stop breathing and some gasping for breath - and unlike my hubby she sleeps in a bedroom on the other side of the house. So spouses are definitely not a definitive method.
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(09-14-2015, 08:05 PM)sunshine Wrote: It seems that many doctors are uninformed and unaware, and that “sleep doctors” are financially rewarded by current system that requires sleep study, and they are unlikely to support change.

I was quite disappointed with my sleep study experience and the care and effort that was put into reading my sleep study. As a former respiratory therapist I’ve seen how one doctor will put in a good effort to interpret a study and help the patient understand what is happening while another will give the bare minimum interpretation with nothing additional to help the patient understand. For example, I’ve learned through my trial and error that I react poorly to pressure changes so using a pressure range is not for me. It results in central apneas. In my opinion if the sleep doctor does nothing to help his patient understand the diagnosis then I think a more cost effective way should be found. My report conclusion was as follows, “mild OSA. CPAP 10cmH20 somewhat helpful”. My evening in the sleep lab was a huge challenge as well. I think there must be a better way.

By the way, that pressure of 10 I’m on is amazingly helpful.
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Sorry but I must disagree that a spouse isnt a good way to determine SA. IMO a spouse that knows what to watch for and is willing to stay awake a few nights and watch their spouse sleep is likey the best way to find SA.
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I have been using an auto BiPAP for nine years. I needed a new machine. My new insurance required me to have another complete sleep study, and yes, I had to go without treatment during the first part of that study. I find it ridiculous that insurance would dictate that I need to go without treatment for several hours to prove I still have apnea.
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