What product can you buy that is expensive, works with your PC, does things that could be critical to your health, but the salesman can’t tell you how to use it?
Sounds stupid, huh?
A lot of medical products, that’s what.
I found this out during a long and painful experience with Obstructive Sleep Apnea.
I can’t breathe at night — it’s not being fat, although I am, it’s that for some reason the muscle tone in my neck sucks. So as soon as I drop off to sleep, my throat closes up and I stop breathing. As my blood oxygen levels drop, adrenalin kicks in, I wake up a little bit, my throat opens up, and then I immediately pass out again.
Most people have some form of obstruction when sleeping. However when it reaches over 120 times per hour, you’re basically waking up twice a minute. That means no REM, tossing and turning all night, your adrenalin and stress hormones are in high gear, your heart rate is surging all night long, your blood pressure is out of whack — as you can imagine, not a good thing. If left untreated, OSA at that level can lead to heart attack and stroke. Early in life.
So I went to the doc and told him my problem. Told him I needed a CPAP. (Continuous Positive Airway Pressure — a device that does not breathe for you, but keeps your airway open so that you can breathe) My wife and I have been observing the symptoms for years, we’re done the research, and now it is time for action. He said I needed to go to a pulmonary specialists first — a guy who specializes in lungs and hearts. Why? Because it had to do with breathing. Could I have just went to the pulmonary guy first? No, they won’t take you without a referral.
I go to the pulmonary guy. Tell him I have this problem, have had it for years, it’s gotten bad enough that I am unable to get enough sleep at night and my health is going down the toilet. I need a CPAP. Pronto.
Do I get a CPAP? Nope. I get a “sleep study”
Sleep studies cost $2000 and they are very important to make sure that you really have the problem that you say you do. Or at least that’s what they told me. They measure your breathing, pulse, movements, and blood oxygen through the night. They also can fit you for a mask to use with your CPAP and show you how to use one. You’d think sticking a mask on your face would be fairly simple to learn, but it’s good to have support.
I show up, tell them my problem, and say “So, once you measure this, do you start fitting me for a mask?”
Nope. We send you back to the pulmonary guy. We just take measurements. Another guy comes in during the day and reviews the data. Then we send the data to your pulmonary guy and he makes a decision.
Gee, I thought I had already made the decision.
Did the sleep study. Went back to the pulmonary guy.
Can I get my CPAP now?
Nope. He tells me yes, it looks like you have Obstructive Sleep Apnea (which was very much a “no shit?” kind of moment for me) Now you must have a CPAP.
Yay! Cool! Got one here? It’s been 4 weeks since I started this and I’m feeling the worst I ever have in my entire life. I will go to another hundred tests and doctors, just please give me a CPAP so I can breathe tonight.
Nope. Dude, you got to go back for another sleep study. We just make the diagnosis here, the sleep study guys are responsible for fitting and making sure it’s working okay. They make sure the diagnosis is correct. Maybe it was my imagination, but somewhere far away I could hear cash registers ringing.
Back to the sleep study, where another $2K later I have a temporary mask and my first real night’s sleep in months or years. But no CPAP. Where’s the CPAP? Hell, you got to go to the medical supply place for that. We don’t sell CPAPs. What do you think we are, a home medical device provider?
Off I trot to the medical supply place.
By this point I’m starting to get a little concerned. Even though I am currently under insurance, for most of my life I have been self-pay. And I need this CPAP thing. It’s not like a new hat. It’s not even like a car, or a house. I need this CPAP thing like I need air. So what happens if I have no insurance and the one I have breaks? What if the power goes out? What if it stops working well? What if my condition changes? It’s not like I can play pin-the-tail-on-the-billing-chain every time something needs tweaking. After all, this is my breathing we’re talking about. I am very fond of breathing.
So I call the doc and make sure that it’s an APAP — Automatic Positive Airway Pressure device. Through my research I found out that the automatic ones will adjust themselves during the night. That means less fooling around with doctors.
At the medical supply place, I finally get an APAP. But it was programmed to be a CPAP. The doc wrote the prescription for an automatic machine, but that it would be set on a fixed setting.
So the automatic machine was set to run in non-automatic mode. Why? As best as I can tell, for safety. We can’t have folks running these machines just any way they want. If it needs adjusting, I was told, just call us up, bring in the chip, and we’ll turn it up or down a notch or two.
But how will you know if what you are doing is correct? How will I know when to bring it in? Hey if you start having a lot of problems, let us know and we can reschedule a sleep study. Find out what’s going on.
I have reached the end of my patience. The medical system is a system between providers — doctors, test takers, diagnosticians, pharmacies, and such — and payers — insurance companies and government programs and such. Nowhere in that equation was the patient, although everybody was supposed to be in it for him. Nobody had any malice, everybody was acting as carefully and precisely as they could and they all had my best interests at heart. But somewhere along the way I stopped being helped and started being herded.
That’s not happening.
Programmer Versus The System
So I go home and find a pulse oximeter — a little device that measures my pulse and heart rate over night and then reports to me what is happening. It’s not a $2000 sleep study, but if my oxygen is fine and my heart rate isn’t spiking? For all I care things are working fine.
I have decided to go off the doc treadmill and start taking control of this thing.
The pulse oximeter shows up. Cool little gadget, a PulseOx 7500 Wrist Oximeter, plugs right into a USB port, and after some screwing around I got it to work.
But the program to access the data is proprietary. The data is proprietary. Hell, the USB drivers are proprietary. The company that makes the device doesn’t support the software and the guys who made the software are long gone (both of these thing probably happened for liability reasons). So could I have the spec? I’ll write my own program to pull the data? Nope. The spec does not exist on the net. Aside from using the software they provide to read and display the data, I have no options. Can I correlate it into larger groups? Perform my own statistical analysis? Export to a standard format? Nope, nope, nope,
Ok, how about re-programming the CPAP to go into full auto mode? After hours of googling, I can’t find a way to do that either. For a machine with a data card, a processor, and all these smarts it doesn’t seem to want to talk to other machines.
I even found out that my machine was monitoring my breathing habits during the night — it could tell me of obstructions. Between that and the PulseOx I had a pretty damned good set of instrumentation, but the machine couldn’t tell me what it knew. That was for the doctors. Not the user.
“If you have any problems or would like us to look at the data, just bring in the card and we’ll take a look” the nurse helpfully told me on the phone.
So I started calling people who sold CPAPs on the net. Spoke to one guy last week. If I bought a new machine, paid for it with my own money, do I get the technical guide along with the user’s guide? Maybe a link to a SDK somewhere?
“I can’t tell you how to configure your machine or how to get data from it,” the guy told me, “the FDA strictly forbids me from telling you the details of how to operate the machine except as a user”
How about not setting the machine, but just getting the diagnostic information it contains? Nope.
I can be a user, but I can’t be an informed user. If I want information, I must go to the magic people who charge me (or somebody else) money. After all, what would silly old me know about reading such complex information? It would do nothing but confuse me.
Now I’m not shooting up morphine — I’m basically using a machine that maintains pressure in my throat while I sleep. Best I can tell, there is nothing addictive or harmful about this situation — especially compared with strangling myself while I sleep each night. But the machine vendors have a deal with the docs and the techs and the specialists and the rest of the system where everything is a walled garden and I’m not invited in. I’m just the owner, the user, the human being.
If this situation existed anywhere else where we paid tens of thousands of dollars, people would be outraged. But it’s all hidden here, except for those who are stuck on their own. Worse, the system is rigged so that open and shared information is harmful to those who provide it, so the incentives are all for controlling more and more information and charging for access (usually in the name of safety or risk or whatever). And so it will simply get more complex and difficult to access.
Meanwhile I’ve got a cool machine that could help me understand my condition, and I can’t do anything but plug it up and turn it on.
“I could tell you how to program it, ” the salesman said last week, “but then I’d have to shoot you”
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