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Why Sleep Apnea Patients Rely On a Lone, DRM-Breaking CPAP Machine Hacker (vice.com)
Jason Koebler writes: "SleepyHead" is a free, open-source, and definitely not FDA-approved piece of software for sleep apnea patients that is the product of thousands of hours of hacking and development by a lone Australian developer named Mark Watkins, who has helped thousands of sleep apnea patients take back control of their treatment from overburdened and underinvested doctors. The software gives patients access to the sleep data that is already being generated by their CPAP machines but generally remains inaccessible, hidden by DRM and proprietary data formats that can only be read by authorized users (doctors) on proprietary pieces of software that patients often can't buy or download. SleepyHead and community-run forums like CPAPtalk.com and ApneaBoard.com have allowed patients to circumvent medical device manufacturers, who would prefer that the software not exist at all. Medical device manufacturers fought in 2015 to prevent an exemption to the Digital Millennium Copyright Act to legalize hacking by patients who wanted to access their own data, but an exemption was granted, legalizing SleepyHead and software like it.
Christy Lynn was tired all the time, and, after months of trying to diagnose the problem, one of her doctors thought they’d figured out why.
“I didn’t fit any of the descriptions for sleep apnea,” she told me on a phone call. “I’m a woman, I wasn’t overweight. No one would have thought to test me, except I was seeing a doctor who had a similar medical history.”
Prediction for end of Universe #42: Fencepost error in Quantum_bogosort.cpp
or garage door openers their remote codes, the system should have switched to needing an exception to having to prove that it was legitimately copyright material.
But as I said elsewhere, I'll take "Evidence the USA is an Oligarchy" for $500
I've had a narrow naropharyngeal cavity my whole life. Great for holding your breath underwater, but terrible for breathing while laying down.
Sleepyhead software is great. It allows you to view the medical data your CPAP machine tracks, but is not normally accessible to you, the patient. Did you get that? It's your medical records, they belong to you, but you are not normally allowed access to them. You need that information to track your progress and make informed decisions about your care. Without this software, if you want to view the data, you must request it from your doctor's office and they typically charge you a fee for copying it. Fuck that.
My view is that the patient is responsible for their own health and doctors should only act in an advisory capacity to make recommendations for improved health. Software like this gives you back control and that's why I think it is so important.
The particular aggregious thing about this is that these machines get FDA licensure as 'medical devices', and the US Congress, which empowers the FDA and all forms of US copyright protection by the weight of the laws they pass such as the DCMA allowing crap like DRM, has also passed laws making it a punishable crime (HIPPA) to withhold a patient's medical information from them whenever they request it. They can, at most, charge a nominal fee for the copying of the information to give to you, such as a $5 or $10 cost of burning a CD with your MRI images, etc. I wish someone with some time on their hands and some kahonas on them would sue the living shit out of the manufactures of these devices for violating the law. It's pretty pissy to hold data for a piece of property that someone owns from them, like auto data for the car in your own driveway, bad. But holding back data that affects their health? After they pay ridiculously marked-up prices for these little pumps and hoses? They need to go to 'get fucked-in-the-ass-every-night Federal prison' for a few years. Fucking pieces of shit. That's not a capitalism or socialism thing. That's just dickwads being low life scum.
There is no need to eliminate the FDA, because specifying and managing the testing of compounds is a vital function that would have to be introduced anyway. Instead, I would strip it of its power to keep products off the market. This is the power so often abused by well-connected corporations. Preventing generic anaphylactic shock inhalers that are available on the world market from competing with Mylan is a prime example.
Let doctors and medical payers keep using "approved by the FDA" as a gold standard while at the same time having the option of importing and using a products that has passed similar regulatory regimes in other major nations when it becomes general knowledge that the fix is in.
The FDA should also be required to show its work in full when it renders an opinion. This is information that doctors and payees may need when evaluating the quality of its recommendations.