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.)