Thousands of sleep apnea sufferers rely on a lone Australian CPAP hacker to stay healthy


#1

Originally published at: https://boingboing.net/2018/11/16/sleepytime-vs-dmca.html


#2

In the U.S., the problem isn’t only copyright and DRM shenanigans. There are also rules about who is allowed to interpret medical data. That’s why the lab sends your blood test results back to your doctor instead of directly to you, and why the imaging tech who performs (and analyzes) your x-ray, MRI, or CT scan doesn’t tell you what they see but instead tells your doctor who then “interprets” it for you.

I’m a newbie hosehead (CPAP user). My machine writes to the SD card, supposedly as a “backup”, because it also has a cellular modem that transmits my data to my respiratory therapist’s clinic. I asked about a privacy policy regarding this “feature” and they had nothing. They said I could remove the cellular modem if I wanted and just bring in the SD card on each visit.


#3

I can only image the typical IoT lack of security on these things.

Wireless or not, though, it’s also one form of predatory late-stage capitalism (DRM) informing another:

“Your doctor says bring in your chip or card, and they read it, but they don’t read it for diagnostics. They read it for insurance compliance to make sure you’re actually using it,” Steve Levine, a SleepyHead user from California, told me on the phone. “Everybody is trying to get you in and out the door, and take some profit from your pocket.”


#4

So in the US you don’t get a copy of lab results for yourself? In Europe (or at least in Poland, where I live), we get all the results and we have to give them to the doctor by ourselves. It’s like that not only with blood tests and x-rays, but also more interesting stuff, like CT scans. Last year I needed to have a CT scan of my skull, and I got full dataset on CD, including DICOM files. I’ve kept a copy for myself (3D Slicer is an excellent viewer for this kind of data), and when I’ll have more time, I’ll make 3D print out of it :slight_smile:


#5

It depends, but generally it goes straight to the physician. Sometimes they’ll give you a copy if you ask, sometimes not. As long as you’re not “difficult.”


#6

I went online and found information on my ResMed CPAP machine in about 10 minutes. Turns out I can put my machine into “clinical mode” by pressing two buttons at the same time for three seconds. From there I was able to adjust the min and max pressure, air temperature, and so on. I was also able to get more information on the different sleep apnea indices for the night and last 30 days.

But then I know a little about what I’m doing having studied the subject for some guy’s research project (that alas never went anywhere). Now, is it OK to let people without any medical or technical background fiddle with their machines? What if we were talking about a defibrillating pacemaker?


#7

There’s no doubt that it’s a thorny question. One of the people in the article acknowledges that there are serious dangers. But absent a doctor who’s willing to put in the time to make the adjustments it might be the only real option for the end-user. One of the reasons things seem to be working with the CPAP hack is that the software is accompanied by a community of trusted people who are in the same boat and can give advice.


#8

My doctor was very explicit about where my data would go and what it would be used for. Including providing the data to my insurance company. My insurance, and most insurance companies my doctor explained, require “proof of compliance” before they will continue paying for the cpap. Their excuse is the number of patients who don’t use their cpap as often as they should. Mostly bc it feels weird and, if not fitted and calibrated correctly, uncomfortable. Which is why his practice is highly focused on comfort.
I wonder if the DRM bullshit is why the insurance companies moved to a weird installment lease to own payment structure?
Btw, if you live near Georgetown TX and need a great sleep neurologist, PM me and I’ll give you my docs info. Totally worth driving from Austin to go there


#9

When I used APAP for several years my clinic set the min at whatever the machine minimum was, assuming it would self adjust up. I thought I was suffocating to death, it was horrible. I went online and was coached through putting the machine in clinical mode and self experimented until I found the minimum for me couldn’t be lower than 4. I have no medical background, but I know my body. At the time there was a different guy making tracking software, I bought a card reader for 15 bucks and uploaded the software and I was in business. We trust people to learn to self administer insulin, an extremely dangerous thing. People can be trusted to manage their sleep apnea treatment.


#10

Good point – I hadn’t thought of the insulin/CPAP analogy. But I wasn’t given any personal instruction on how to use the device at all; not even an offer to do so. It arrived by UPS, and had a manual. I seem to recall it saying “when you had instruction, etc.” I just decided to say to heck with it; with my background, I was able to set it up easily, and looked on Google for more info.

Needless to say, I’m not particularly impressed with the sleep study outfit I went to, but I’m too lazy to get another one.


#11

I love that.


#12

'Straya… fuck yeah!

Also, as someone about to begin the evaluation process that will likely lead to needing a CPAP machine or similar, this is interesting. Thank you.


#13

Perhaps you do, but it seems to me that’s the sort of thing people also say right before they decide to forgo chemotherapy in favor of acupuncture or whatever.

I was looking for this a while ago, and finally found it.

But of course in the end sleep apnea is not cancer treatment and it’s not insulin administration, and perhaps should not be judged by those standards.


#14

Yeah, that’s part of why framing it as “a perfect parable of the problems of late-stage capitalism” like the original post only works if you consider “late-stage capitalism” to include all types of various regulation that is typical in social democratic and mixed economies. As you say, the government isn’t just enforcing the DRM and copyright, it’s also restricting who can practice medicine without certain licenses, defining what is considered practicing medicine (and interpreting medical tests does fall under that according to the FDA, as companies like 23AndMe know), defining what can be sold over the counter versus with a prescription, etc. The Aussie hacker almost certainly technically in violation of laws regarding practicing medicine (if he were in the US), though like with the Copyright Office prosecutors and the FDA could choose to show forebearance. (They don’t always, as prosecutors have gone after people veterinarians giving advice online, doctors operating MRI clinics to give scan results directly to people, getting glasses prescriptions online, much less a lot of non medical related occupational regulation.) Of course all those regulations have advocates, based off the idea that people can’t be trusted to handle their own health. That’s probably true in many cases, but it complicates the idea of this being a “perfect parable” unless you reject a whole lot of other regulation, much done in the name of saving people from themselves. (Some of it done in the name of people’s bad practices imposing costs on others, which is unavoidable in cases of things like infectious diseases which are contagious, but in the case of some other health problems like this can be more about “the government / taxpayers are paying for your treatment, so we’re going to make sure you use it right and don’t waste our money.”)

The story could be framed just as much or more consistently as a “perfect parable of the problems of big government regulation,” or of “big business and big government working together.” Unless one does object to some existing regulations about practicing medicine without a license (not necessarily all of them, but one should at least think that they go too far in edge cases like genetic testing for example), it’s hard to see why you’d take the side of the hacker in this case.


#15

A friend in Ontario uses a CPAP, and she said that as soon as you’re diagnosed with sleep apnea, you have to get a CPAP or lose your driver’s licence.

I wonder if the doctors report usage to the province? (Meh. No, I don’t wonder.)


#16

The risks of reconfiguring your CPAP machine almost certainly don’t compare with that of a pacemaker. In addition it’s a lot easier to compare the effects of adjusting pressure yourself day to day and make an informed decision versus having a “specialist” dick with it. Using software like Sleepyhead makes it easy to see and interpret the results.

I’ve had lifelong sleep issues and dealing with sleep specialists is a frustrating and demoralizing pain in the ass. (After multiple sleep studies and ineffective CPAP therapy one highly regarded doctor in the field told me “some people just don’t sleep as well as others”. Gee, thanks Einstein.) The more self-maintenance I can do the better.


#17

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