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The CPAP jailbreak community was eye-opening when I first learned of it. I never expected something like that, but with the draconian policies it's not surprising.

For example, my CPAP has a CDMA radio inside, which transmits usage data back to the manufacturer & my doctor. Insurance won't pay for it unless the machine tells them I'm using it – so a medical device company has a record of when I sleep and wake, which is mildly unnerving.

Edit: I think sleepyhead[0] was the biggest project when I started looking into it, but it isn't under active development anymore. Apparently forked to OSCAR[1].

[0]https://gitlab.com/sleepyhead/sleepyhead-code

[1]https://gitlab.com/pholy/OSCAR-code

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The CPAP world is a microcosm of what's wrong in the medical world, i.e. why things cost so much.

A CPAP machines costs about 10x as much as it should, and a part of that is insurance companies wanting to make sure they are not paying for a device you are not using.

Which then increases the price, which makes insurance companies even more worried about them.

Then you are paternalism where only a Dr. is allowed to change the settings on the machine. So they lock them down, which adds even more to the cost.

And then they are prescription only, so they have to go through specialized distributors because heaven forbid someone actually buy one without a Dr. letting them.

The end result of all this is lots of people making money, and higher costs for the patient in the form of higher insurance premiums.

Maybe it's my bias, but I assume most of that 10x comes from the overly strict medical device regulations from the FDA.

Why was this downvoted? Do people here seriously believe that the US doesn't have a system of crony capitalism? Is it so implausible to believe that regulations, while created with the best intent, are not susceptible to corruption via lobbying by powerful corporations to keep competitors out of the market?

>overly strict

Disclaimer: my opinions, not my company.

I worked as a project engineer for a major testing company (underwriters laboratories). This is a vast simplification, but in essence the difference between medical device testing verses say, household electronics, is that in practice household electronics get evaluated with a "safety checklist" of all the serious and common problems to that kind of device (plus additional testing if deemed necessary which is not common) that UL and industry have seen over the years.

In contrast, each and every kind medical device is torn apart and subject to a clean evaluation. There are still checklists and common issues they look out for of course, but in practice each device is considered novel while the same is not really true for more common devices.

I think the latter type of testing is fundamentally more expensive, that said I think there are tons of regulatory issues that add to cost - I just want to argue that medical device testing will probably never be cheap.

I don't disagree.

Testing should be as strict as is needed. I'm arguing/assuming that US testing standards for medical devices is overly strict.

I think* there is the same "maximum" standard for all medical devices. But what's appropriate for a pacemaker is overkill for a CPAP machine.

* but am happy to be corrected (Cunningham's Law)

Your are partly correct.

There are multiple classifications for medical devices.

CPAPs are class 2 devices whereas a pacemaker is class 3. I don’t want to over simplify, so I will link you to the FDAs entry point into the Byzantine maze of classifications.

https://www.fda.gov/medical-devices/overview-device-regulati...

It doesn't. You can buy CPAP machines from manufacturers that don't work with insurance companies for far less (around 1/4 of the price).

The machines are also not locked down, however they do still require a prescription so that part of the cost still exists.

You can also buy them used, which is perfectly legal.

Insurance is nice because they pay for the supplies (some of which are supposed to be replaced pretty frequently). However, I've found that it's pretty easy to stretch the life of any component, as long as you clean it thoroughly each day.

Its worse than that. Before receiving a CPAP machine ~$1,000, most doctor's require a sleep study, which costs many thousands of dollars, and many times wait months to get the appointment. CPAP machines are usually the ultimate solution to reported sleep problems involving repeatedly waking up, and I don't see why they can't be prescribed immediately to see if they solve the problem.

My insurance wouldn't even pay for a monitored sleep study before I did an at-home study. Luckily, the at-home device showed moderate apnea, so I didn't have to do the lab study.

That's what they did for me as well, but not for other people I know living in a less affluent area of California. The take-home solution is much more cost-effective, it is a wonder that it hasn't been adopted universally. Also, I LOVE my CPAP.

That's fair, I only know what happened at Stanford. Side note to anyone reading this: don't go to the sleep clinic at Stanford. If your doctor refers to there, ask for another referral. There's a reason they have 1.5 stars on Yelp...

And I totally agree about the CPAP – any morning after I accidentally take it off in my sleep (pretty rare, but happens especially as the seasons change), I feel like absolute garbage. It's amazing what actually breathing through the night can do for you.

Completely agree. And the worst part is sleep studies are medically unnecessary - an APAP machine (automatic machine) can auto-set the necessary pressure, and no sleep study is needed.

Simply sleep with an APAP for a week, review the pressure graph and draw a line at the bottom of the values. Then set the minimum pressure to that number, or slightly less and done.

Review every few months.

If you ask a Dr. about this they'll talk about the 1% of less cases that will not be correctly adjusted by such a machine. But all you need to do is ask the patient after a week "do you feel better?". If they say no you can go for the more complicated options.

Hahahahah. Oh man.

The vast majority of patients take months or longer to get acclimated to the machine. Most will say they feel /worse/, because the machine gets in the way of their sleep at first.

I look forward to hearing more medical pearls from the web design community.

Apparently I'm an outlier then, I got used to it in under a week, and swear by it. If my wife and I stay up late and get short hours on machine, or nap in the living room instead of upstairs and on machine, I know it the next day.

5, 6 hours in a base minimum for me to not feel sluggish and possibly even start the day with a headache.

I think the autotitration helps acclimation...and for me, I was so anxious for relief, I was acclimated before I even got the machine.

I'll chime in with the sibling comment. I felt immediately better after getting an APAP, within the first few days of using it. And my doctor didn't set specific pressure point but rather a range which we've never adjusted. And from memory that conversation was "I'm going to put it within these broad bounds and let it find the right place during the night. If it's not working for you come back in and we'll figure it out."

I bought a CPAP off an Amazon seller here in Canada a few years back. I have a large neck and would wake up gasping for air in the night. It was going to be several months to get the sleep study so one day I impulse bought it. First night I slept 8 hours, couldn't remember the last time I did that. Best $600 I ever spent.

The vast majority of patients take months or longer to get acclimated to the machine

Sounds like your experience is with much older machines. Is that reasonable to say?

No. Last time I worked shifts in a pulm/sleep medicine clinic was about 18 months ago.

Or how about from people who have actually used them? I put getting a study for years because the whole thing seems such a massive scam. Shame on me: I really needed a bipap, and now I feel so much better. But I could have figured this out by trying one for a week, as others have suggested. It blows air into my nose, for heaven’s sake. How many years of med school does it take to learn about that?

Also: wore it 8 hours the first night, and every night since. Not that hard to get used to.

You know CPAP has 50% compliance right? A huge amount of patients never get used to it. And even of those that stick to it, they struggle through the night with it. They define successful CPAP treatment as 4 hours or more a night, when 4 hours is obviously insufficient.

Because (a) there are problems that are not sleep apnea that should not be missed, and (b) the cpap pressure needs to be titrated to your need, it’s not a binary device.

Admittedly, (b) is now less of an issue since there are a handful of auto-titrating machines on the market now. They’re less reliable than a sleep study, but they’re better than nothing.

Yeah, the newest modern CPAP machines auto-titrate. On your back? It ups the pressure if it detects less breathing. On your side, it will lower the pressure. Its quite nice. I have a ResMed AirSense 10 for two years now...but I imagine if I had got my machine a few years earlier it would have been different.

It is true that other things can be the issue. There is a place for sleep studies, and at home sleep studies can detect sleep apnea fast and cheaply, and should be the first option, unless some other ?neurological? symptom is already presenting itself.

I have a Resmed S8 that is now at least 10 years old. They had APAP then, so it's not a new option.

Why is a prescription required anyway?

To keep the ponzi going

In most medical devices anything, prescription is justified the same (read in a mocking voice) "There could be another reason for those symptoms so if we don't gate your access behind an expensive doctors visit you could treat the wrong thing and die"

This is used to justify eyeglass prescriptions.

This bullshit really needs to go, especially for eyeglass prescriptions. Making people wait weeks for another eye exam when their glasses break after the first year is honestly bullshit.

I think you may be able to.purchase one, but if you want insurance to cover it....

cpaps are in a different ballpark than doctor visits! If you hunt around, you should be able to see a doctor for $100-ish. (Edit: of course, $100-ish is still a large amount of money)

(In some parts of CA, Heal will send a doctor to your house for a one-time fee of $159. And after my mom complained to said doctor about my snoring, their doctor ordered me a sleep study. So yes, that's one way to get it.)

That said, out here, most of the small independent offices that used to exist have been bought out by one of 3 medical groups. And with the large medical groups it's pretty hard to get a concrete number sometimes.

> "There could be another reason for those symptoms so if we don't gate your access behind an expensive doctors visit you could treat the wrong thing and die"

Like all medical things they're (a) expensive (b) limited in supply (c) you don't have the knowledge, experience or impartiality to self-diagnose (d) you can't tell whether you need the device but buying it anyways removes limited supply from the market (e) you don't know how to calibrate it (f) you might hurt yourself.

Same reason it's insane Americans are allowed to self-refer to specialists: you don't know which specialist you need, you don't know whether you need a specialist at all, there's a limited quantity and you're likely just squandering a valuable resource.

In both cases letting unqualified end users have at it could just as easily increase the price not decrease it.

Glasses, though, no excuse.

I though eyeglasses prescriptions were to assess the right "myopia settings" (not sure what the right word is)?? I guess they should stay valid for some period of time, like 1-5 years, in case you break your glasses, but presumably your sight can change (worsen) over time so another exam is a good thing.

"A CPAP machines costs about 10x as much as it should, and a part of that is insurance companies wanting to make sure they are not paying for a device you are not using."

If you look just at BOM, I am sure my insulin pump must seem the same way (about $3500); but the technical support from Medtronic is top notch and the devices are not mass market; probably only about 100,000 of them each year (just based on a 4 year warranty period, which is when your insurance covers them, and a quick google showing about 350,000 on them).

I do think there is a bit of a razor blade model here though, given that the consumables will cost nearly as much as the pump over the course of a year.

One thing about Kaiser CA, they’re very proactive about OSA. Free take home test rig (must be back by 9am), and the sleep specialist pushed a higher end CPAP, 3 masks, 3 pillow types into my hands and said I’d get a 10% copay call. Followup on choosing right mask/pillow, and when my machine starting whistling after 4 years, doc emailed the sleep specialist and they gave me a new machine with no copay. No telemetry.

Think I’ve spent $120 for the machines, the headgear costs (supplier) are overpriced. But you can look for one of those online shops and wait for 4-pack specials, got 16 pillows for $150. Not an expense I can complain about.

Once the insurance has finished paying for it (eight months in my case), you can disable the radio.

Some doctors (mine included) prefer getting your data off the memory card when you visit the office, rather than downloading it from the internet anyway.

The radio has to be optional for people whose beds are in places with unreliable or no cellular service (high up in buildings, in basements, fringe areas, etc...)

IIRC the data sent over the cellular connection is just summary information, it doesn't contain a full dump of the detailed measurements that will be stored on the SD card.

I actually already have the option of disabling it (it has an airplane mode), but it spams me to turn the network back on.

I just kinda gave in, to be honest. They're going to get the data anyway, and it is valuable to the doctor. I just don't need the device manufacturer to be storing it.

Yeah the radio is there as an added convenience so you don't have to keep a log and send it in for several months as evidence of usage. This is the fallback for those without radio, and its easy enough to put it in airplane mode.

That said, Resmed provides a nice enough interface where you can track your sleep habits. To be fair it seems all they seem to track is how much you sleep each day, not when, where, etc. So they only collect data on usage, and also they feed some of the data (like detected apnea incidents) to my sleep clinic for review. The medical supply company stops providing the data to my insurance after the probationary period is up. Remember, your insurance already has access to a great deal of your medical information already, this isn't that invasive, and CPAP's are expensive and take a while to adjust to, so I understand why they want to ensure people are using them and they're working if its going to be purchased.

That app isn't available everywhere though. I bought a secondary unit recently and I can't register it with the app (that I can't even download if I remember correctly). At least my other CPAP has an SD card.

The app was just a website. The whole thing was administered through my doctor/supplier when they programmed the thing. It is a bit locked down, but I think its because its a machine that's "prescribed".

You might also find the hacks for diabetes pumps to create closed loops equally fascinating. That and all the projects around it like Nightscout [0].

[0] http://www.nightscout.info/

Don't really know how viable this question is, but for curiousity's sake, is it possible to build a Faraday cage around the machine?

How would that help with this part:

> Insurance won't pay for it unless the machine tells them I'm using it

You instead need to throw most the board of directors of the insurance provider and device manufacturer in question into a Faraday cage, lock it, and walk away.

On a more serious note, this is a new world of crazy for me I wasn't aware of. I wonder how difficult it would be to push forged data back to the monitoring agency with physical access to the machine with an independent setup. Then, simply put your actual device in a Faraday cage so you can still use your device as needed, with insurance covering it, without insurance invading your privacy and likely using that data for other unscrupulous purposes as well.

Might we want to consider that medical insurance fraud is in fact a serious concern?

From prior work in the industry, durable medical equipment is one of the most targeted areas for scams.

Relatively high cost, amortized over an extended utilization time.

I'm not particularly surprised that insurance companies (and therefore manufacturers that are supplying them) include such features. It'd be borderline negligent from a financial perspective not to.

It would just be easier to remove the chip lol

The machine still works if you yank the 4-pin connector from the cellular board, so that's the easiest way. We gotta add that to the instructions...

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