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[News] Is Your CPAP spying on you?
#1
Angry 
Is Your CPAP spying on you?
ProPublica, the investigative media source, along with NPR has published a rather long piece ...

HEALTH INSURANCE HUSTLE

You Snooze, You Lose: Insurers Make The Old Adage Literally True

Millions of sleep apnea patients rely on CPAP breathing machines to get a good night’s rest. Health insurers use a variety of tactics, including surveillance, to make patients bear the costs. Experts say it’s part of the insurance industry playbook.

Last March, Tony Schmidt discovered something unsettling about the machine that helps him breathe at night. Without his knowledge, it was spying on him. 

From his bedside, the device was tracking when he was using it and sending the information not just to his doctor, but to the maker of the machine, to the medical supply company that provided it and to his health insurer.

Schmidt, an information technology specialist from Carrollton, Texas, was shocked. “I had no idea they were sending my information across the wire.” 

Schmidt, 59, has sleep apnea, a disorder that causes worrisome breaks in his breathing at night. Like millions of people, he relies on a continuous positive airway pressure, or CPAP, machine that streams warm air into his nose while he sleeps, keeping his airway open. Without it, Schmidt would wake up hundreds of times a night; then, during the day, he’d nod off at work, sometimes while driving and even as he sat on the toilet.


“I couldn’t keep a job,” he said. “I couldn’t stay awake.” The CPAP, he said, saved his career, maybe even his life.

As many CPAP users discover, the life-altering device comes with caveats: Health insurance companies are often tracking whether patients use them. If they aren’t, the insurers might not cover the machines or the supplies that go with them.

In fact, faced with the popularity of CPAPs, which can cost $400 to $800, and their need for replacement filters, face masks and hoses, health insurers have deployed a host of tactics that can make the therapy more expensive or even price it out of reach. 

Patients have been required to rent CPAPs at rates that total much more than the retail price of the devices, or they’ve discovered that the supplies would be substantially cheaper if they didn’t have insurance at all. 

Experts who study health care costs say insurers’ CPAP strategies are part of the industry’s playbook of shifting the costs of widely used therapies, devices and tests to unsuspecting patients. 

“The doctors and providers are not in control of medicine anymore,” said Harry Lawrence, owner of Advanced Oxy-Med Services, a New York company that provides CPAP supplies. “It’s strictly the insurance companies. They call the shots.”

Insurers say their concerns are legitimate. The masks and hoses can be cumbersome and noisy, and studies show that about third of patients don’t use their CPAPs as directed. 

But the companies’ practices have spawned lawsuits and concerns by some doctors who say that policies that restrict access to the machines could have serious, or even deadly, consequences for patients with severe conditions. And privacy experts worry that data collected by insurers could be used to discriminate against patients or raise their costs. 


Schmidt’s privacy concerns began the day after he registered his new CPAP unit with ResMed, its manufacturer. He opted out of receiving any further information. But he had barely wiped the sleep out of his eyes the next morning when a peppy email arrived in his inbox. It was ResMed, praising him for completing his first night of therapy. “Congratulations! You’ve earned yourself a badge!” the email said. 

Then came this exchange with his supply company, Medigy: Schmidt had emailed the company to praise the “professional, kind, efficient and competent” technician who set up the device. A Medigy representative wrote back, thanking him, then adding that Schmidt’s machine “is doing a great job keeping your airway open.” A report detailing Schmidt’s usage was attached. 

Alarmed, Schmidt complained to Medigy and learned his data was also being shared with his insurer, Blue Cross Blue Shield. He’d known his old machine had tracked his sleep because he’d taken its removable data card to his doctor. But this new invasion of privacy felt different. Was the data encrypted to protect his privacy as it was transmitted? What else were they doing with his personal information? 

He filed complaints with the Better Business Bureau and the federal government to no avail. “My doctor is the ONLY one that has permission to have my data,” he wrote in one complaint.

In an email, a Blue Cross Blue Shield spokesperson said that it’s standard practice for insurers to monitor sleep apnea patients and deny payment if they aren’t using the machine. And privacy experts said that sharing the data with insurance companies is allowed under federal privacy laws. A ResMed representative said once patients have given consent, it may share the data it gathers, which is encrypted, with the patients’ doctors, insurers and supply companies.


Schmidt returned the new CPAP machine and went back to a model that allowed him to use a removable data card. His doctor can verify his compliance, he said.


You can read more at: https://www.propublica.org/article/you-s...rally-true

[Note to Moderator: I know the policy is to post the entire article, but it is very long. Here is the link https://www.propublica.org/article/you-s...rally-true if you want to post the entire piece. -- steve]


UPDATE: there is a second article, "Your Medical Devices Are Not Keeping Your Health Data to Themselves" which can be read at https://www.propublica.org/article/your-...themselves and includes other types of medical devices.
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#2
RE: Is Your CPAP spying on you?
https://arstechnica.com/science/2018/11/...ally-true/

Reposted there.. getting a fair bit of press.
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#3
RE: Is Your CPAP spying on you?
I read most of the article a few mins ago. True how the insurance and DME manipulate the prices of machines and supplies. With my current situation, the insurance is United Healthcare Community Plan with Medicaid as a backup. So for now, I pay zero for any of my CPAP supplies. Upon getting disability approval, I'm sure that changes. But paying overblown prices for supplies, like the article's example of $27 for a filter is not gonna fly here with me.

I'm not a lawsuit happy person, but I do believe this is one area these aren't frivolous. There has to be a way to get the attention of these businesses that CPAP customers will not accept their price gouging practices. Yes I know we can shop in other places than the crooked DMEs, and that is what I will be doing assuming my insurance plan changes with SSDI approval.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Is Your CPAP spying on you?
Dave, if you want a real horror story about insurance, read the other Pro Publica article that I linked to here, about an actuary (!) who had a hip replacement for which the hospital billed his insurance some multiple of what it was worth.

The DMEs are a sad saga we already know, but I'm not so concerned about the online specialty retailers; from what I can see, they don't do the same kind of stuff. Also, some supplies, like mask parts and filters and hoses, are easily available from the usual big online general retailers where there's price competition. I think the big problem with medical equipment in our current scheme is that the manufacturers have found out what the market will bear and they're charging it, and the non-DME retailers are charging what they have to. Thus the very necessary market for used machines.

(off-topic) Congratulations on the pending SSDI, and I hope for your sake that the approval goes through. Welcome to the Slackers' Club. Smile I've been a member for a few years. One way of looking at it is that we've accepted the early-retirement package.
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#5
RE: Is Your CPAP spying on you?
Kaiser sends me copies of the invoices from Apria (no balance due since I'm on 100% coverage with the HMO) and the prices are insane.
Not only are the prices nearly double what I can buy for through Amazon, the hoses are not even genuine ResMed... they are billing close to $30 for cheap hoses that I can get online for like $5 or $6... and even the genuine ResMed hoses are available for under $10.
Of course, Apria is such a pain to deal with that I often buy my own supplies anyways.
-- Rich
Links to Download OSCAR here
OSCAR Installation and Setup

Using Attachments to Post Images on Apnea Board

INFORMATION ON FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

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#6
RE: Is Your CPAP spying on you?
(11-21-2018, 08:16 PM)Fats Drywaller Wrote: Dave, if you want a real horror story about insurance, read the other Pro Publica article that I linked to here, about an actuary (!) who had a hip replacement for which the hospital billed his insurance some multiple of what it was worth.

The DMEs are a sad saga we already know, but I'm not so concerned about the online specialty retailers; from what I can see, they don't do the same kind of stuff.  Also, some supplies, like mask parts and filters and hoses, are easily available from the usual big online general retailers where there's price competition.  I think the big problem with medical equipment in our current scheme is that the manufacturers have found out what the market will bear and they're charging it, and the non-DME retailers are charging what they have to.  Thus the very necessary market for used machines.

(off-topic)  Congratulations on the pending SSDI, and I hope for your sake that the approval goes through.  Welcome to the Slackers' Club.  Smile  I've been a member for a few years.  One way of looking at it is that we've accepted the early-retirement package.

Thanks F.D. Though I'm truly grateful for how our healthcare system in the U.S. of A works to serve patients with respect and professionalism, we all are aware it only takes 1 bad apple to spoil the pie.

It seems to me the bad apples are attracted to lesser known diseases and afflictions such as apnea treatment. IMO there's a method to this madness. Lesser known can include the trait less concern or less high level medical think tank involvement, which further keeps it all tidily in the darker corners of medical research. Just my two cents.

As for SSDI and with the hopefully added Supplemental, the process to claim my rightful disability benefits are very frustrating. I've been in a "circle the field" flight holding pattern for most of the 4 years of inability to work. I was recently updated by my paralegal that my case file has been assigned a review board team for appeal. Getting closer to approval. I recently got a federal student loan worth over $57K discharged due to disability status. yippee!

sorry for off topics...back to regularly scheduled complaint about CPAP...

Yes folks, I do believe our CPAP devices send possibly more personal info than I feel comfortable with, when it comes to sending after compliance hurdle. Since I cannot call via the CPAP, and I've passed over the compliance hurdle, mine is sporting Airplane mode. So whoever wants to look over my shoulder and get constant info, I'll poke their eye with a blunt stick.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Is Your CPAP spying on you?
I'm a little conflicted on this issue up to a point. If the insurance company is paying for the machine then maybe they have a right to make sure that it is being used to justify it's expense. At the same time randomly making this data available to various people is just nonsense. It seems to me that all this so called monitoring just adds to the cost. After all I'm sure people who read these data reports don't do it for free.

Once the patient owns the machine I don't believe they are obligated to send their data to anyone other than who they want it to go to. Put the machine in airplane mode and leave it there. Use an SD card. I think there are other options that will work also that will not void the warranty. I guess if there isn't an SD slot this isn't an option, not sure about that then.

I don't think our health care problems are going to go away anytime soon. I think there are definitely going to be some growing pains. It took us a while to uncover what was going on throughout the system and I'm sure it's going to take some time to fix them. In the mean time..... it just sux! And there are no easy answers except I don't a single payer.

I wonder sometimes if a lot of these companies are using the same business model they've been using for years and the only difference is that we as consumers are just waking up to what is going on because our insurance premiums are skyrocketing and a lot of us no longer have insurance. We've started to notice the actual cost of our health care and it's shocking. Unfortunately for me I was single parent for many years with no support from the father. I always asked what an office visit cost. How much was the medicine and which pharmacy had the lowest price. I frequently had breaks in my insurance coverage do to job changes. Thank god for my and my daughters good health and not any real issues out of the ordinary.
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#8
RE: Is Your CPAP spying on you?
(11-22-2018, 02:02 PM)Sleepstarved Wrote: We've started to notice the actual cost of our health care and it's shocking. Unfortunately for me I was single parent for many years with no support from the father. I always asked what an office visit cost. How much was the medicine and which pharmacy had the lowest price. I frequently had breaks in my insurance coverage do to job changes. Thank god for my and my daughters good health and not any real issues out of the ordinary.

The U.S.'s system of corporatized, super-expensive, and inextricably job-linked (Medicaid being the only exception) medical insurance works just barely OK, as long as you follow two rules:
  1. Don't get sick.
  2. Don't get injured.
(I'm not claiming that it's original, but it's all too true.)
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#9
RE: Is Your CPAP spying on you?
You forgot Rule 0: Don't get fired.
Apnea Board Monitors are members who help oversee the smooth functioning of the Board. They are also members of the Advisory Committee which helps shape Apnea Board's rules & policies. Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#10
RE: Is Your CPAP spying on you?
Big Brother is watching you...or. er, in this case, me too.

What a crazy world...so many fascinating devices and apps and zero privacy. Sad
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