NPR CPAP Story

[Janknitz]

https://www.npr.org/sections/health-sho ... ea-devices

"You view it as a device that is yours and is serving you," Umansky says. "And suddenly you realize it is a surveillance device being used by your health insurance company to limit your access to health care."

[EdNerd]

I just read that!! And came here to see if it had been posted yet. It does make the blood boil.

And yet -- the only way out of this data mess we have created (or passively accepted) is to rise up en masse and protest. Ain't gonna happen is my bet.

Ed

[Okie bipap]

We used to advise new users to check the cost of using insurance against the cost of not using insurance. Sometimes it is cheaper to purchase on line than to use insurance, and may be worth the cost just to not put up with all the BS the insurance companies require. For us, it is much cheaper to use insurance, but I still purchase some items on line for the convenience..

[biztraveler]

I think the article is a bit sensationalist regarding the surveillance angle. My Dr was upfront about compliance and so was my insurance company. I called my insurance company and told them my Dr prescribed a CPAP and they gave me a complete run down on renting, compliance, and working with the DME. I'm surprised people do not take the time to research what is potentially a costly, life-long, treatment.

[igotsuckeredtoo]

I couldn't even finish it.

This is the sort of crap that was illegal before de-regulation! This is why de-regulation. These business didn't want to "make a living" they want to make a killing!

[cdl]

That article is what got me here. I got diagnosed with sleep apnea just a few days ago. Glad I saw this beforehand - I might just buy the equipment outright to avoid those shenanigans. What would the folks here recommend as one that doesn't phone home automatically?

[chunkyfrog]

Buying online seems to be the best choice.
Taking the sd card to a cooperative doctor will help establish usage
for insurance and DOT requirements.
Monitoring is not cheap, and if there is no money/law in it--it will not happen.
Paranoia is a personal matter.
Cursing into hidden microphones may help--a little.

[D.H.]

I never worried about the privacy issue, since I assume that the law requiring insurance companies not to deny insurance or charge more for preexisting conditions will not be repealed. Even if it is, they know about the sleep apnea diagnosis regardless of what the CPAP sends back to them.

This is relatively unique in medicine, as this is the equivalent of somehow checking that each pill is swallowed and correctly metabolized.

[SnoringInOregon]

Matt Drudge of drudgereport.com just linked to the ProPublica version of this story. So it will be getting many many page views.

https://www.propublica.org/article/you- ... rally-true

Also, the article is not in any way sensationalist. Many (most?) people aren't aware that their CPAP machine spies on them and rats them out on a daily basis. The only reason I know that my machine has a wireless modem in it is because I'm a techie and pay attention to those things. Most people aren't computer nerds.

[Janknitz]

I felt like the surveillance part of the article was a bit of hyperbole. Tony Schmidt, the person cited in the article, is described as an INFORMATION SPECIALIST. Yet he didn't get that his machine was "phoning home"?? Or that all he had to do was put it in airplane mode if he didn't want big brother watching him (or refuse to use an attached modem).

But the pricing, cost issue is spot on. We were supposedly paying more than the retail price for the services provided--instruction, maintenance, repair, and transmitting compliance data for insurance coverage. With huge deductibles and little or no DME coverage these days, there's often no point to getting it through insurance, and therefore no need for compliance data. And we can do a lot better job monitoring and adjusting our own therapy than paying others who don't care to do it.

[D.H.]

Back in 2005, I used my out of network benefit because the after reimbursement expense was essentially the same either way due to the overcharging by the in-network provider.

[desipap]

I just got my machine that has thee Bluetooth and WiFi capabilities.
I don't want anyone looking at my data, other than those I actually give (posts on this forum for example).
I turned-off the Bluetooth and not connecting the WiFi. Great to have have the SD card!

[Dan_McD]

I think the article is a bit sensationalist regarding the surveillance angle. My Dr was upfront about compliance and so was my insurance company. I called my insurance company and told them my Dr prescribed a CPAP and they gave me a complete run down on renting, compliance, and working with the DME. I'm surprised people do not take the time to research what is potentially a costly, life-long, treatment.

DITTO! X 2

[LSAT]

I just got my machine that has thee Bluetooth and WiFi capabilities.
I don't want anyone looking at my data, other than those I actually give (posts on this forum for example).
I turned-off the Bluetooth and not connecting the WiFi. Great to have have the SD card!

Did you pay for it yourself or thru insurance?

[JonathanZK]

This story reminds me of EULAs. Every time you install some software or register for some kind of SaaS website, there's a giant string of legal text that defines the terms of use. The problem is that nobody ever reads this language -- and even if they did, they couldn't understand it without a Juris Doctorate.

Similarly, I'm sure Mr. Schmidt, just like most of us, was presented a pile of papers (physical or digital) to sign when he signed up for insurance, and when he got his machine. His statement that "My doctor is the ONLY one that has permission to have my data" is almost certainly false.

My main beef with all of this is the law. HIPAA -- which governs medical data -- was passed 22 years ago when MS-DOS was still running on most computers while Windows 95 slowly displaced it and just over 15% of Americans were using the Internet at all. It was a different world.

And while HIPAA does well in mandating that collected data be protected, and also does well in at least paying lip service to the notion that patients own (or should have some control) over that data. But by lumping it under some version of existing property law, HIPAA utterly fails in the most important way: defining what can and cannot be done with that data. And that means anybody can do anything with our data as long as sign a contract saying it's okay.

That most of us sign because we're ignorant, is immaterial. That many of us sign because we're under a form of duress (money), is immaterial. At least insofar as the law is concerned.

And that's why I think we need modern data-handling laws that reflect modern use cases. We need laws that understand that, in most cases, consent is neither informed nor granted willingly. We need laws that not only define our data as belonging to us, but also that protect that data from misuse even when we give permission to collect it.

And I don't even mean healthcare. Data is being misused at every level. Employment, Housing, Education, and more.

Makes me want to go build a shack in the middle of Wyoming somewhere and live off the grid...