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"You Snooze, You Lose"
#1
"You Snooze, You Lose"
This article on ProPublica lays out the whole sorry story of how insurers are taking gross advantage of XPAP users, not to mention the scary surveillance aspect:
https://www.propublica.org/article/you-s...stigations

And the article doesn't even mention deals like the one in place with my insurer. Under their terms you pay a copay rental payment for 11 months, then stop paying rent -- but you never own the machine. If you change insurers, or fall out of "compliance," they take it back. Which is why I bought a "gently used machine" from a reliable supplier (fortunately with my doctor's full knowledge and cooperation). It cost more than the 11 months rent, but it's all mine -- and it doesn't send data to anyone.
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#2
RE: "You Snooze, You Lose"
Anyone who owns a device that uses Wifi, LTE, 5g, 4G, a modem, or Bluetooth, to pair with, to receive information from, or to communicate with a server for updates, data storage and interpretation, and time codes, has zero privacy.  Your Fitbit, your smart phone, your PAP device, your smart TV, your computer, your laptop, your smart watch, your tablet, your refrigerator, your automobile, your debit card, your credit card...they ALL transmit data about your location, driving habits, purchasing habits, general health, programming, www surfing....it goes on literally forever.

Most of us haven't begun to consider just how pervasive this is.  Much, much, more than we can imagine.
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#3
RE: "You Snooze, You Lose"
In this day & age, you simply must assume that you don't have nearly as much privacy as you would like to have. 

Once you are solidly on-board with that premise, you won't be as surprised nearly as often.  Bigwink
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#4
RE: "You Snooze, You Lose"
I've spent years basically off the grid with my xPAP therapy, and now I could care less if my sleep data gets sent off to who knows where.

In 2001 I had my first sleep study. I never met the doctor that provided the report. My primary doctor, who had/has sleep apnea wrote the prescription. I bought my own machine, (S6), mask, hose online and bought whatever supplies where ever I could find them.

In 2011 I had to get a data machine (S9 Elite) to be a driver for our vanpool. My same primary doctor wrote another prescription, based on a 10 year old sleep study, and I went through a year with a "decent" DME. I figured that I paid just slightly more than hunting down what I needed, but the 4 masks I got would last at least 15 years and I just needed to buy filters, hoses, and mask cushions off eBay.

In 2015 I bought a new S9 Autoset from a private party. I ran all my own Rescan sleep reports for my yearly DOT physicals.

In 2018 I was looking for a mask with a forehead support so my cataract surgery eye guards wouldn't get pushed around by my Quattro FX mask. It was then that I realized that I didn't exist... as far as sleep apnea is concerned. Thankfully with enough grovelling I did get my hands on an older FF mask.

In exchange I agreed to go to a sleep doctor, ironically the one who did my first study in 2001, and armed with my Rescan data I presented my journey. Fortunately he decided that I should have an ASV titration. I requested a physical prescription, instead of it being sent electronically to whoever DME, and tracked down my own DME to use with my Medicare. I think that I actually found a really good small independent one. Hopefully it works out.

But it did occur to me that I don't have any justification for an ASV machine other than my own data and a successful titration. No one could really prove I was ever on CPAP, much less virtually 100% compliant yet unable to achieve adequate results. And the machine was a definitely over what I wanted to spend to buy on my own. I have an appointment with my sleep doc in a couple weeks and another in January. So take my data, send me those stupid MyAir scores, in this electronic age, I don't care, because if you are not on the grid there will come a time when the system will shut you down.

John
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#5
RE: "You Snooze, You Lose"
“If you really want to be anonymous, stay off the Internet, pay cash and homestead in Montana.”

- Paul Santinelli
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#6
RE: "You Snooze, You Lose"
(11-06-2019, 02:21 PM)bemused Wrote: This article on ProPublica lays out the whole sorry story of how insurers are taking gross advantage of XPAP users, not to mention the scary surveillance aspect:
https://www.propublica.org/article/you-s...stigations

I've never felt taken advantage of by my insurance company. I follow their rules and I get the treatment I need. I general I pay about the same as I would if I were to buy the machine myself.

The propublica article seems to say that an insurance company should pay for a machine whether it gets used or not, this doesn't make sense to me. I do believe that there needs to be much more information given to patients ahead of time about the data that will be collected and how it will be used. Personally, it never bothered me that they collected this data, I'm more worried about the other items mesenteria listed in his post.
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#7
RE: "You Snooze, You Lose"
Yup. A lot of disturbing things going on, as revealed in that article.   Shock-2

Now I guess I'm even more happy that my insurance didn't cover my equipment. I had Kaiser co-pays for sleep studies and all, but that was pretty reasonable. Unfortunately after muddling through many months of misinformation as to equipment coverage from EVERYBODY in the whole process - the entire sleep lab staff, my primary doctor (not really his job to know) client services, Kaiser DME staff, reimbursement people, dispute-a-claim people, EVERYBODY - until I found one person who actually knew to magic phrase...  "Any DME equipment that isn't supplied by Kaiser directly isn't covered on any Covered CA plan." It took me three months of therapy-free mixed apnea suffering to find the right person with the answer that everybody should have known.   Thumbs-down-1

Okay, I'll step off my soapbox now.   Eat-popcorn Laugh-a-lot  

Finally I can get on with my life and stop fighting Kaiser staff and misinformation.  Got my prescription in-hand and purchased all my equipment from one of the suppliers posted on AB and life is wonderful again.   Crazy

Back to the privacy issue...  Kaiser is completely disinterested in me so I am off their radar.   Thumbs-up-2

Countless attaboys to the AB forum contributors who have helped me in my journey.   I-love-Apnea-Board
RayBee

My personal journey:
1/14/18 - Sleep Study, 40 AHI, Mixed Apnea (Oh joy).
Next 7 months in the circus - 6 studies, 4 xPAP machines, 8 masks, loads of poor help and misinformation.
8/20/18 - Prescription finally in-hand.
9/4/18 - I purchased  my ResMed ASV machine & F20 Mask from Supplier #2.
9/12/18 - Received my equipment... And another Hose-Head was hatched.
10/27/18 - Discovered an oasis here at the Apnea Board (You guys and dolls rock).

Seek professional help and advice from your sleep doctors. And if you get tired of the bureaucratic BS and fleecing of your hard-earned cash, exit the Twilight Zone. You have found sanctuary here at the ApneaBoard…
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