Frankly, this is an example of everything that's wrong with healthcare in the US and much of the developed world.
The textbook OSA patient is a middle-aged man with a short, thick neck. OP is a middle-aged man with a short, thick neck. I'll bet dollars to doughnuts that OP is also hypertensive. In such a presentation, there is a very simple initial prescription - lose weight, drink less alcohol, quit smoking, get some exercise, see me in six months. In nearly all cases these simple lifestyle changes cure the OSA, yield a huge array of other health benefits and cost nothing. CPAP is only indicated if either the patient still has symptoms after reducing their neck circumference, or is somehow unable to lose weight.
The only thing that went wrong in OP's case is that his primary physician yielded to demand for a quick fix, rather than making the correct prescribing decision. OP would rather sleep on a respirator than improve his lifestyle. I'm not blaming him, it's a cultural problem, but it's one that will kill us all and lumber us with an impossible burden of healthcare costs.
Consider this: The leading cause of limb loss in the developed world is type 2 diabetes. Mull that thought over for a moment, let it percolate. Most cases of type 2 diabetes are preventable through simple lifestyle changes. Most cases of dysvascular amputation can be prevented by better management of blood glucose levels. People are having their feet cut off because they are unable to appropriately manage their most basic physical needs. That thought is what disturbs my sleep.
Sometimes, like in this case, quick fix is sorely needed to even get started with long fix. If you are sleep deprived and have hypertension, there is just not enough energy to do exercise or seek or cook healthy food.
As for the weight - I can only offer anecdotal evidence: OP's problems are likely aggravated by weight, but it may well be that there is a muscle problem as well. My BMI (weight in kg divided by height in meters squared) during different periods of my life hovers around 25 - just between healthy and overweight. According to my wife, once my BMI is below 25 I stop having episodes of snoring at night and the more my BMI goes over 25 the more snoring I do.
Interesting thoughts. My father (who is not overweight, normal range BMI) has had sleep apnea problems for years and the CPAP all but cured him of it. A coworker of my girlfriend (not overweight) also has sleep apnea and has had tremendous success with a CPAP. Forgive my knowledge gap here but, is it just OSA specifically that is usually found in middle-aged men with short, thick necks or is it all forms of sleep apnea?
As far as your comments about better management of glucose levels, consider that the primary recommendation for type 2 diabetes is to eat a diet high in carbohydrates (fruits, grains, vegetables), making glucose management incredibly difficult if you follow the doctor's orders. Your blood sugar is killing you; make sure you eat things that make it kill you faster. There's obviously a problem here.
I don't know what's up with the OP's situation, but you present a false dichotomy. My doctor advised weight loss (not like I needed another reason) and CPAP.
Sleeping well is key to fixing other things in your life that may be contributing the weight gain. It's pretty hard to commit to an exercise program if you have no energy. And in my case, I was consuming caffeinated drinks nonstop just to get a few hours of focus at work.
I agree there is a worrisome focus now on managing the downsides rather than fixing the orignal problem. But it's not for lack of trying. Doctors have been hectoring patients to change their lifestyles for decades with little success.
Obesity is a complex issue. I will only note that over the last three decades, all the other vices are way down -- alcohol, tobacco, even the use of illegal drugs. But obesity is way up. To me that suggests it's not all about a desire for 'quick fixes' or some generalized failure in knowledge or willpower. Culprits may include pervasive advertising that makes gluttony acceptable, agricultural subsidies, and maybe even some hitherto unknown toxicities in refined sugar. (Victor Lustig of UCSF is making that case very strongly.)
They have info on adjusting lots of models of machine. And there is nothing actually illegal about doing so for yourself.
You don't really need a sleep study with an APAP machine since it does it automatically. So what you do is find a friendly doctor to write a prescription, then go to http://cpap.com/ and buy your own machine.
Legally any doctor can do this, you don't need a specialist. Some are willing to prescribe based on symptoms without needed a sleep study.
And by buying the machine yourself you can research it to pick the best one instead of what the medical supply house picks for you.
These laws are incredibly annoying, but there are ways around it - while staying legal!
I remember once seeing a bottle of sterile water (for a humidifier) that said "By prescription only. Only for use by, or under the advice of, a Doctor."
Apparently by writing that they can charge more money for it, and insurance will pay for it. But if it's over the counter (remember we are talking about water here) insurance won't pay.
Suppose you have a system, but for legal liability reasons you cannot have this system be open to users (say it's a medical system, and having untrained people fuck around with it messes with certification.) However, you make it reasonably easy for users to override any interlocks (i.e. put in no protection).
A user finds out about the override, hacks their device, misprograms it, and dies.
Is the company that manufactured this device legally liable for this death? If they knew that it was easy to override the safety interlocks, are they then liable? How about if there was demonstrable evidence that the knew about the specific override? What if they, in an informal capacity, spread information about how to do the override?
Here is a parallel situation: same company makes a device, and has locked it down so hard that it's not possible to actually get anything done with it. Nurses and other trained practitioners know that "the usual way of business" is to override some of the safeguards, because, of course, that's the only one anyone ever gets any work done. However, the company disclaims all legal liability in the case that someone does such a modification. Are they allowed to disclaim that?
At the Instituto Oncologico Nacional in Panama, some doctors discovered that they could fudge things to circumvent some limitations in the software that calculated shielding block geometry for radiotherapy patients.
In essence, the system could only handle 4 blocks, but it was possible (and sometimes correct) to add more than one block as a single shape. If this happened in the wrong order, however, it would screw up.
The staff in charge were brought up on civil (and possibly criminal) negligence charges, from what I recall.
"On 18 November 2004 it was announced that one of the physicists was acquitted, but the other two were found guilty, sentenced to four years in prison, and barred from practicing their profession for seven years (45). They have initiated an appeal process, but they are very worried, given the precedent established by the Costa Rica case.
The [...] Costa Rican physicist [...] was accused of negligence in 30 homicides and 59 radiation injuries. He was also accused of falsifying documents and of using false documents. On 30 July 2001 he was absolved of the latter two charges, but he was found guilty of 14 homicides and 50 radiation injuries. He was sentenced to six years in prison and barred from practicing his profession for five years."
No it's not. At the doctor's office you should be told: "Don't fuck around with the machine. If you need to change the settings, come to me and I'll change it. You also have this hand-book of how to override, but if you do you might die."
Not to nitpick, because I agree, but I think it's a more accurate to say "litigation doesn't work like that" or "lawyers don't work like that". I was under the impression that it's less a specific law which spells out the liability, but rather a patchwork of regulation and court cases that leave a company with so much uncertainty that the only intelligent choice is to cover your ass any-which-way that you can.
Not totally accurate. There isn't much uncertainty in the law, but rather whether you broke it. Plaintiff has the burden of proof. And while there may not be a specific statute spelling out liability, case law has equal wait in the US.
Here is an example. This is a common 3 part test used to decide whether a manufacturer is liable for failure to warn:
1. Manufacturer had actual knowledge of the alleged danger
2. Manufacturer had no reason to know that consumers would know of this danger.
3. Manufacturer failed to exercise reasonable care to inform customers of the danger.
While I don't necessarily disagree, that's like saying hackers ruin everything. What do lawyers (hackers) do but try to find weaknesses in the current law (program) and exploit them? We haven't figured out how to make perfectly secure systems that are still usable, so why do we expect our laws to be any more robust?
My loved ones are smart enough to not dick around with life sustaining hardware and software.
On a less snarky note, it's absurd that I can't do what I want with something I bought and paid for, whether that be a game console or a breathing mask. It's not the law's job to protect me from myself.
And I say lawyers ruin everything because the legal profession has a vested interest in keeping the lay person from being able to understand and use the law effectively. including such idiocy as the OP's scenario.
> And I say lawyers ruin everything because the legal profession has a vested interest in keeping the lay person from being able to understand and use the law effectively.
This may be true, but it is not the reason law is hard for the lay person to understand.
Western legal theory has taken "justice" to mean that, given the same facts, and irrespective of the personal opinions of the judge or jury, the court should reach the same decision. Just think about that for a second-- it's not an easy problem. In fact it's a fabulously difficult problem, even before you add the condition that the system should remain fair over time in excess of a human lifespan.
The (clearly sub-optimal) solution we've arrived at over the past few thousand years is basically to implement an enormous natural-language virtual machine in which individual agents (lawyers) execute programs (laws) using a very precisely-defined instruction set (legal jargon) which is very similar in structure to English. The reason the laws cannot be written in English is that English has natural ambiguities; this is fine for conversation, but is absolutely unacceptable when human freedom or livelihood is on the line.
The obvious downside is that it means that average citizens can actually not learn the law simply by reading the law. To mitigate that, we've constructed an execution context in which a separate lawyer represents each interested party, with a judge acting as a neutral third party present to represent the interests of the law. The jury is asked only to establish the facts; understanding of the law is not required. It's really all pretty clever.
Obviously it's not perfect. But, before you criticize the system wholesale, remember that law didn't always work this way. Time was you would just take your grievance before the king, and depending on if he was feeling merciful or surly or liked your family, you would either get what you wanted or not. If you were lucky, there would be rhyme or reason to the king's judgments, and you might be able to predict what he'd say. If not, well... sucks to be you.
The complexity of the law, the cost of employing full-time legal scholars for every interaction, and the occasional abuses of the system-- these are the price we pay for fairness.
I'm not saying I think lawyers are awesome, but a world without them would be a hell of a lot worse than most people think.
That's only true on the surface. In the US lawyers execute not just statue (laws written by the legislator and signed into law by the executive that have yet to be over turned) but case law. Which acts as a single vary large multidimentional training set that's clear at the extremes but vary vague in the middle. The reason it's vague is people pretend there is far more stability in the system than actually exists so there is case law supporting any vaguely reasonable line of argument. Thus, lawyers are there not to help interpret the law, but create the most reasonable argument supporting their clients goals and providing their clients feedback to how well that argument might stand up in court. Under this interpretation you can clearly see how a talented team of lawyers can help bend the law to their client's point of view and 'distort' the impartiality of the system.
Case law is still about fairness, though. The ideal is that the same facts should be decided the same way. Of course, since no case ever has exactly the same circumstances as a previous one, there's always some wiggle room to argue that this one is more like that one or the other one and so should be decided in that particular way. The adversarial system is a way to try to balance that; you make your best argument, I make my best argument, and somebody disinterested decides which one they buy.
Saying "you can use case law to support any argument" is hyperbole; you can use any case which was been decided the way you'd like in the past, and the older the statute the more cases have been decided and the more wiggle room you have. But it's not a binary thing; the strength of your argument is affected by how similar the circumstances are, how much body of precedent there is for and against, how close the jurisdiction was, the reasoning given for the previous decision, and many other factors.
Of course this is really hard to keep track of if you're not a full-time legal scholar in that particular area of law, and it makes the whole thing seem even more impenetrable to the rest of us. But again, it's all in the spirit of fairness. It's not perfect, but consider the alternative: a justice system where previous decisions didn't matter -- where the law was just "the law", decided fresh by whatever judge you happen to stand before -- would be far more capricious.
Except when they save you money? As in the famous "Fuck you. Pay me." video: http://vimeo.com/22053820
I think it's more nuanced than simply "Lawyers are bad!" The cost of litigation, even when you are likely to win, is so high that it encourages whatever behaviors best avoid litigation, rather than whatever behavior fulfills the original goals of the company/sector/system. Companies and even entire sectors, once well-established, would rather optimize for continual, guaranteed success within a subpar ecosystem than risk losing big just to allow an environment of marginally more satisfied "informed consumers", or what-have-you.
Edit: I am rambling about "the system" and such, without offering any solutions, partly because I'm at a loss for one. The best I can muster would be for legal fees and penalties to be in a range that does not warrant selecting such behavior. But that topic is a deep rabbit hole unto itself.
Though I don't presume to have read his mind, I feel like sirrocco is falling prey to a line of thought that I often do with regards to law. As a programmer, I often want to build some sort of deterministic decision tree regarding matters. The instinct of "Once I have all possible behaviors and paths modeled, an optimal solution will present itself!" is a strong one.
And then my friends in law school remind me, sometimes loudly, how the facts or circumstances can vary greatly, and how nothing in life is quite that simple. Alas.
It may be complicated, but that doesn't make it any less outrageous. And it seems like "complicated" problems tend to go away rather quickly when enough people become sufficiently outraged.
Or more to the point: we shouldn't be making excuses for people blatantly fucking us over. Let them make their own excuses. Even better, let them get out of the way.
> You'd think sticking a mask on your face would be fairly simple to learn
The mask has to push air down an obstructed airway. Obviously it has to fit correctly. As for masks being easy to fit - see almost any facemask and check for the nose strips.[1]
> So I went to the doc and told him my problem. Told him I needed a CPAP
Imagine you're a doctor. You pay millions for liability insurance. Some guy turns up and self diagnoses his illness. Do you accept that diagnosis? Or do you follow recommended procedure for that illness? (I accept that the recommended procedure is broken because of insurance).
> My wife and I have been observing the symptoms for years, we're done the research, and now it is time for action.
See, for example, Morgellons or Chronic Fatigue or Myalgic Encephalitis or MMR vaccinations where people have spent years doing the research and have arrived at very wrong conclusions and want useless, or harmful, medical interventions.
[2] NICE is the organisation in the UK that assesses cost effectiveness of treatment options. It's important not to waste money on ineffective treatments; it's important to use a cheap treatment if it's as effective as an expensive treatment.
> it's not being fat, although I am, it's that for some reason the muscle tone in my neck sucks
hehe, jeez, I really wonder why "for some reason" the muscle tone in his neck sucks ...
that said, having to repeatedly pay $2k for sleep studies that tell you nothing new before you get any treatment is really crappy. even if the first type of treatment should be a dietician and a personal trainer, not a fancy machine.
and even then, if you have a fancy machine that is doing important health related tasks for you (possibly you're even trusting it with your life), I don't think there should be any question whatsoever about the user of said machine being allowed to know exactly how this machine works.
as for liability, just have people sign off on the liability if they make any modifications or change settings to the machine since the last checkup by a medical expert, if you make modifications it becomes your own responsibility, that only makes sense.
A lot of his complaints remind me of a situation I'm sure everyone here is familiar with:
Client / Non-technical Manager: I looked it up on the interwebs and we should use [MongoDB / Node.js / Java / C++ ...] for [Completely inappropriate problem space].
You: But that technology doesn't fit our problem space and / or we have no domain knowledge of that technology.
Client: The interwebs said it was the fastest hipster technology around it would be stupid not to use it. You just want to charge your extortionate rates analyzing the problem just to come to the same conclusion.
You: ....What?!
I'm not saying there isn't anything wrong with the medical profession, and the US seem to have fostered a special brand of messed up in there healthcare system but suggesting that the doctor should just agree with the patients own diagnosis, or worse the the patient should just self medicate, seems like a crazy thing to advocate.
I think it's more complicated than that. Sometimes the patient is forced to become the expert on his/her condition. Doctors don't always have the expertise, and the system doesn't encourage them to spend the time required to understand truly difficult cases.
Yes, I'm sure patients sometimes get weird ideas in their heads, but doctors are far from perfect as well. I think patients should definitely study the literature and bounce what they find off their doctor. Ideally the doctor is both open to new ideas and capable of ruling out the obviously silly ones. Of course I have to qualify that by adding that occasionally, the obviously silly idea turns out to be right.
I used to agree with you. But I've seen too many doctors who are either outright bad, or who don't recognize the limits of their knowledge.
I've been told many things that were directly contrary to the reality of the situation. I've been prescribed drugs which exacerbated my condition, only to read up on them on the Internet and -- within hours -- see how they'd obviously prescribed the wrong drug based on the symptoms I had described.
In my current opinion, doctors are far too convinced of their own infallibility and supposedly immense knowledge. I believe that if you're a rational, intelligent person who actively seeks out reliable knowledge, you can in fact have far greater insight into your specific problem than any doctor can hope to reasonably attain.
I used to think it was crazy that in various other countries you can visit the pharmacist, describe your condition, and likely walk out with the drug you wanted. Now I'm convinced this is a perfectly acceptable solution, at least for me.
Very simply, the medical system can extract as much money from the patient as they want. The worse the illness, the more the patient will pay. Because the alternative is death. Health care is not a matter of supply and demand, it is a matter of life and death. Patients will give you the shirt off their back to avoid death. It's just not fair.
That is why strong government regulation for health care is a good idea.
These things run far more smoothly in countries with a public health care system. There, doctors typically get a fixed amount of money for each kind of illness. Hence, their incentive is to diagnose an illness as swiftly as possible and get the patients out the door. This has its own set of downsides, but at least the patient gets help rather more quickly and with less hassle.
I would say the problem could also be treated with less regulation, or to be more accurate, less litigation. Amounts to the same thing in the end, I suppose.
You could fix a lot of the damage by switching insurance from a gambling basis to a contractual basis. Health insurance would be a contract between an individual and a corporation wherein the individual pays little to nothing if he remains healthy, but enters into a mortgage based on the cost of the healthcare should he require it. The maximum value of the mortgage could be assessed by the insurance company similarly to assessments for premiums, and related to the individual's total income, savings, and property. Paying a traditional monthly premium would boost the person's maximum mortgage.
The current system operates counter to both private and public paradigms, as it does not encourage consumers to seek the best value for their money nor eliminate the pursuit of profit by service providers. It is a MASSIVE example of the prisoner's dilemma, where each agent is motivated toward actions detrimental to the structure as a whole.
> That is why strong government regulation for health care is a good idea.
More like this?
>> "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"
You might well be right on a larger scale, but for this issue, the problem is the heavy regulation which is keeping a competitive market from giving patients what they want.
Also, it's not like anyone ever had to jump through hoops inside of hoops in public health care systems. The hoops just doesn't say "$2000 per jump" on them.
That FDA regulation sounds reasonable. (If it is a regulation, maybe the guy on the phone just wants to get rid of the caller.)
There are restrictions on who can practice medicine, and there are restrictions on what medical products people can buy and use, so it's reasonable to think that there will be restrictions on the suppliers about what they provide and who they provide it to.
The heavy regulation is not preventing competition. The heavy regulation is just providing a minimum base for that competition. The problem is with the utterly broken system of US healthcare.
Note that in the UK you still wouldn't get any information about hacking your CPAP machine. And you'd go to a doctor, who'd refer you to a specialist for sleep trials and fitting. And you'd have to try "lifestyle changes" (losing weight) first.
>> The heavy regulation is not preventing competition. The heavy regulation is just providing a minimum base for that competition.
>> The problem is with the utterly broken system of US healthcare.
These are not uncorrelated. They are heavily correlated.
Sure you can do everything by the book, and then you end up with $4000 or more for a SIMPLE thing.
And of course, people can say "lawyers ruin everything", but I'd like to add "crybaby patients ruin everything" as well. Because if the manufacturer of the machine allows configuration you can be certain someone, if the machine asks for 1+1 they will type 3 and die as a result.
* The heavy regulation is just providing a minimum base for that competition.*
In the case of the medical system this is actually explicitly not how the system was designed. There was a theory going around about when Nixon was president that the reason the Soviet system was superior[1] was that they were able to prevent "wasteful competition", so the right thing for the US to do to keep medical costs down was to prevent competition in medicine. So we got a lot of laws that, for example, required anyone proposing to build a new hospital to get the permission of all the existing hospitals they might be competing with.
[1] People believed this at the time because the economic statistics published by the USSR said that the USSR was really awesome, and because the idea that central planning works is pretty intuitive.
I have no idea whether to be for against government regulation in health care because it's a complicated issue and I am nowhere near an expert. But I would like to ask you if you think the same logic applies to food. Can the food industry extract as much money from me as they want? I will give you the shirt off my back in order to avoid starvation. If no, what is the magic happening in the food industry? Could similar magic apply in health care?
There's a big difference here. Basically, anyone can grow food, while not many people can make their own antibiotics or CPAP machines in their backyards.
The reason your analogy breaks down is competition. Usually it's pretty easy to obtain food in some shape or form, so there are near endless alternatives if you face steep pricing. It's really quite difficult to be a competent doctor, so you've got limited alternatives. The magic you would need to apply is reducing the barrier to entry to medical competence somehow.
The magic is a balanced equation. Either the consumers and producers are both capitalists and strive to create the best value per dollar, or the profit has to be taken out of the equation with public healthcare, with the best value per tax dollar being dependent on the good will of the bureaucracy. Right now, we have an unbalanced equation where producers strive for the most profit and the least liability, and insured consumers have absolutely no reason to even pay attention to how much money their insurance company pays in exchange for treatment, the quality of which the consumer feels is almost totally out of their control.
Put the power, and the responsibility, back into the hands of patients who until now had no reason to care, and you will see a vast, rapid improvement in the state of healthcare.
That is why strong government regulation for health care is a good idea.
Government has the power to protect anyone from anyone else. Ideally, it should use that power to protect weak people from the powerful corporations, as you propose. Practically, it tends to use that power to protect powerful corporations from slightly less powerful competitors.
My experience wasn't nearly as bad as the OP's - one at-home sleep study, a tester CPAP machine for a week, and a prescription to get my own CPAP soon after. (My health provider/insurer was Kaiser, which is more integrated, so perhaps they have less incentive to milk it.)
It was, however, strange to need a prescription to buy a machine. The prescription includes the settings, so when it arrives, it's already tailored to your needs.
Even so, the machines I was given were relatively easy to understand -- I even fiddled with the settings a bit and found what was more comfortable. The machine I bought for myself is a DeVibliss, and part of its appeal is that comes with software to read its data. It is proprietary and Windows only, but likely hackable since we have readouts of what the data means. I haven't gotten around to figuring that out.
Medical techs take a really dim view of patients fiddling with settings. I know they did when I asked them all kinds of questions. Their assumption, which is probably verified for them daily, is that patients have no idea what they're doing, and conceding authority is to invite disaster. Hackers may trust themselves to figure something out, but let's be serious -- we can be aggressive because it's just data. We forget all the times we hose the filesystem, corrupt the database, have catastrophic memory leaks, and so on. Medicine is not as forgiving as computing.
Still, with CPAP, it's probably very difficult to cause yourself injury. Maybe a more open policy would be appropriate.
As a hacker and someone that has a few things that I take medicine for I ask a lot of questions, and do a lot of research.
My doctors always find it interesting when I can pull up full charts and graphs of data that they simply have written down, mine will generally be more accurate and has contained data points that they didn't have due to being measurements I took at certain times of day (blood pressure), and it has helped them give me the medicine I require.
Not all patients are dumb, and while it has taken me a while to get my doctor to realise this, she has started realising that maybe there is something more to it and that it will be beneficial to both of us.
I understand the CYA policy, and I understand that for most patients that is the best way to go about it, but for those of us who are outliers I think it may be beneficial because we may have more time to look at the data and find significant data (and then get them verified by a doctor) than some other people. It is in my own personal best interest to be as healthy as possible and if I can do that by knowing more about what is going on with my body, then all the better!
The most valuable hack I've discovered and used when dealing with the health system (and bear in mind this is in the UK, where the main problem is not cost, but time) is to be great friends with a GP. I always discuss health issues with him before going to the doc, so there are no surprises afterwards, and I know exactly what to say to expedite the process.
It turns out that there are various magic phrases you can use to speed up the outcome, guarantee a referral, etc. If you're friends with a doctor, they'll tell you those phrases.
It probably won't help with all the waste in the process, though. And it definitely won't help with closed hardware.
I got a peculiar sense of satisfaction about seeing someone (presumably US) having to ask to have an acronym or bit of country-specific jargon explained.
My brain is now full of terms that only exist in the States that get bandied around in discussions as if everyone knows what they mean.
I tried to schedule a sleep study, was told it would be a month, tried to price a sleep study somewhere else, was told it would be over $2000...
...gave up and bought an automatic CPAP machine off Craigslist for $650 from someone who knew how to access doctor mode (hold down button X for 10 seconds after turning the power on), set it to adjust automatically...
...and stopped after a month because the mask was preventing me from sleeping well, but at least I didn't spend more than $650.
Probably not. The sleep study measures the number of events per hour and your blood oxygenation, and in the followup (which can be in the same night, at no extra cost) discovers the necessary pressure. It doesn't check for mask comfort or fit. (Should it? Probably.)
"If this situation existed anywhere else where we paid tens of thousands of dollars, people would be outraged."
oh you mean like your iphone? or how about your android? or the software that runs your television? or how about your car?
you're locked out of software products allthetime and (almost) no one is outraged. the people who care diligently go to work to jailbreak the device and everyone else enjoys something that "just works"...
If you paid tens of thousands of dollars for your Android phone, you might want to check out the better prices available at http://www.google.com/nexus/.
Also, to answer your real question and not the hyperbole: you aren't locked out of your iphone or Android with anything like the security of the device he's describing. No one cares about installing software on their TV -- mine doesn't even have an obvious port by which this could be accomplished -- and cars share the same liability structure as medical devices, probably. Plus many of them are actually quite easily programmable.
I think this is a perfect opportunity for businesses from other countries to step in. Say, some company in a less regulated country starts selling ones. Would it be actually cheaper to hop on a plain and get yourself one, instead of taking a couple of $2000 sleep studies? I bet it would.
To generalize, basically any kind of business could profit from less regulation. You just have to find the market big and desperate enough to travel far for that.
>> To generalize, basically any kind of business could profit from less regulation.
I think the point is made that the health-care business is doing quite well.
Now how about the actual patient? Would you say he would benefit from more or less regulation?
Seems to me that competition on this front would only be between the companies that can manage to better extort patients.
I say more regulation works best in the health-care area. Authority is called for to oversee practices and audit business decisions to make sure that the patient is first priority and profit second.
Taking an example from Brazil. A while ago the private health insurances were regulated into not enforcing grace periods of users who had already gone through them and were migrating from a different plan from the same or another insurer. Isn't that perfectly valid policy that focuses on the patient for what they really need (health-care)? Would unregulated business agree to this on their own?
Good point, however it is, I think, still unclear wether a patient would benefit from less or more regulation. It, again, looks like a more general discussion of left vs right. While people tend to take sides, we still have about equal numbers of economists in favor of either free market or regulations.
One might argue, that competition is in the best interest of the patient. And that what is currently regulated, should rather be advised. This looks reasonable, however I wouldn't advocate it until this is actually tested.
I once saw a TED-talk by an economist who said that it is trial and error that politicians should advocate, not particular strategies that they "know" are the right ones. That is, I believe, an ultimate solution to many problems, including the medical market.
The government is, actually, extremely slow. I don't remember exactly how it was, but I think there's only one state in US in which it is illegal to have plans to smoke weed in Netherlands. But even that has taken years to implement. My guess is that the market must not be too big, so as to stay reasonably under the radar, and not too small, so the businesses in another country can be profitable.
Definitely sounds like a bit of a racket. There doesn't seem to be any reason to need all these studies to get diagnosed here.
However, if you go too far the other way, you end up with Kevin Trudeau and other scam artists selling you snake oil to cure whatever ails you. There are reasons why people can't just say anything will cure any medical ailment.
You're obviously allowing for nuance but it seems like many people have the argument that, "unless we put all our eggs in the single basket of a central 'impartial/trustworthy/infallible' evaluation and enforcement agency such as the FDA, people will get taken advantage of".
CPAPs aren't exactly super hi-tech either, and since they are fairly noninvasive as medical tech goes I can easily imagine some people experimenting with homebrews...
CPAP can be dangerous actually. First if the power goes out the person can suffocate. The masks have small holes in them for this reason (basically a permanent leak).
A MUCH MUCH more dangerous hazard is re-breathing. In a properly designed machine if it fails (power outage or mechanical) it will have a strong resistance to air flow - this lets the small holes take over.
But if air flow is not blocked then the person will breath the same air over and over in the tube (the same air will flow back and forth) and will eventually asphyxiate.
Another hazard is if the pressure goes up too high, this can cause injuries.
The fact that you are not even aware of these hazards is probably a good reason not to try building one. And there may be more hazards I have not thought of.
All masks come equipped with an anti asphyxia valve. They are a very simple flap that fails open in the case of a power outage or other failure, a (C|A)PAP mask cannot asphyxiate you.
Technically you could breath through your mouth if there was a problem, but some people have issues keeping themself from breathing through their mouth, so they use a chip strap to prevent it. And then this hazard comes into play.
And you entirely missed my point. The masks are safe because someone thought of the hazard and designed against it. If you are making things homebrew you better make sure you are aware of all the hazards.
For everyone hyper-focused on him being overweight- that sometimes isn't the only problem (or the problem at all).
I'm relatively thin/average build, and was having troubles sleeping, breathing and I was snoring a ton. I complained to my GP about this, and he prescribed some nasal spray which didn't help at all. Went to an ENT and of course had to have a sleep study.
The entire time I was telling them, I think my tonsils are fucking huge and I have sleep apnea due to it. Only after seeing two doctors and having an $800 sleep study did they agree and I was able to get my tonsils removed. Afterward they wanted to do another sleep study to find if it fixed it; I said no thanks.
Sometimes- just sometimes the patient actually knows what they need. Now I have a new GP, who is much more helpful in providing what I actually need without random expensive tests.
Of course, doctors should just give the patient whatever he asks for. What does all those years of medical school matter, this guys runs a blog and he has done research before going to the doctor!
I wrote a small program named Oximon a few months ago to extract data from CMS-50x pulse oximeters and generate Gnuplot graphs. I use it to detect REM sleep and it does the job with a nice accuracy so maybe it could help someone suffering from sleep apnea as well: https://github.com/vinc/oximon
While this sort of policy has its place, like for stopping people overriding their morphine machine to skip its limit, I honestly don't see the problem for things like this, primarily diagnostic based equipment.
I wonder if there might be a market for open source medical hardware with open source software to go with it. This could provide people with a very inexpensive option to look after themselves and also by perhaps uploading their data anonymously to an open database, help others too in diagnosing their problems too.
Obviously you when you get into things like this people get a bit scared because the medical industry is proprietary by nature which makes it scary because you don't want to mess with something you are told to go to a professional about, I think ubiuiquity might solve the problem. The more information out there, the more people are educated and the less scared they are.
One of the common jokes between my wife and I is to setup a "home surgery kit" for some point in some horrible dystopian future.
However, we were thinking it out and were moved to wonder why there isn't more straightforward "how-tos" as far as medicine is concerned: how-to relocate joints, how-to suture, how-to collect appropriate equipment, how-to operate in a sane and sanitary manner.
This is, of course as lay people... for all we know all the information is available to whoever is willing to look for it and take the risks involved with amateur medicine.
However, I wonder if what trained people think about the ethics of making professional medical techniques and equipment available to lay folks.
Legally, anything more than first-aid and getting someone to a qualified doctor is going to cause problems (unless you're in exceptional circumstances.)
> One of the common jokes between my wife and I is to setup a "home surgery kit" for some point in some horrible dystopian future.
It's a funny joke. I had similar thought about "Backstreet dentists" in the UK. A few years ago there was a problem getting NHS dentists, and many people didn't have any insurance. You could have made money by trafficking East European dentists into the UK and setting up a secret dentist.
There are straightforward how-tos on every aspect of medicine easily available for everyone, and no need to turn to survivalist guides, either. How do you think doctors learn this stuff? The exact same medical textbooks we use are sold freely to everyone who wants them, and there's a youtube video for practically every medical technique. I learned to suture from a textbook and an online vid, practiced on a piece of foam and some pig skin, and managed a perfectly serviceable if not quite cosmetically perfect suture on my first attempt on a living patient.
> I honestly don't see the problem for things like this, primarily diagnostic based equipment.
It's a similar situation to giving financial advice. You are theoretically making a decision based off of the diagnostic tool, therefore it ceases to become 'harmless.' What if it's out of calibration? What if you forget to do some maintenance procedure and it goes out of calibration?
With software you can put an "IN NO EVENT SHALL THE COPYRIGHT HOLDER OR CONTRIBUTORS BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, EXEMPLARY, OR CONSEQUENTIAL DAMAGES" clause. What do you do with medical devices? The best you can get away with is "for entertainment purposes only."
What do you mean people overriding their morphine machine limit? Sorry but that doesn't make sense. If some one wants to they can always take an extra perceset or for that matter go out and buy some heroin. Education does much more good than "protecting" people from themselves. Blindly following any doctor's directions is a recipe for disaster. Not all doctor's have your best interest in mind, and even if they did they still make mistakes like any other person. It's much more profitable for the medical industry to throw very addictive pills at the symptoms over treating the underlying cause of the problem.
I think open source medical hardware is an industry ripe for exploding, which is helped by 3D printers becoming more common and affordable. Need a new prosthetic leg? Let's print you a specifically custom fit one for next to nothing compared with getting one made the traditional way.
This site smells like a SEO scam. Look in the "related sites" sidebar: lots of links to common search keywords like "treating neuropathy in feet" and "facebook login help", in a small, light gray text.
Would it be possible to reverse-engineer such a device?
I have been messing with some stepper motor drivers, that had at least a few pages of spanish or incorrect documentation, or a very simple circuit, however, I wonder what you do when there is no documentation. How do you learn reverse-engeneering?
For USB devices, where you have access to both the device and some proprietary software that can drive it, this isn't so difficult: you can intercept the USB commands quite easily, then it's a matter of spotting patterns for each activity.
For intercepting the USB traffic, you have a few options:
- software USB Snooping; this hooks into your OS's USB subsystem and intercepts data. The Linux USB debug stuff works well for this, I've had less luck on Windows.
- using a virtual machine and forwarding it the USB device. I've had success with this for intercepting the USB traffic for a device with only proprietary Windows drivers, but where snooping in Windows directly failed. Boot up in Linux, set up a Windows virtual machine, forward the USB device to the VM, install the Windows drivers in the VM and use Linux' USB debug interface.
- Hardware USB snooping devices. You physically insert them between your USB device and the PC, and they log the data flowing through. Obviously, this is a bit more expensive, but will basically always work.
Seems to me like a sensible option would be to try losing weight, since sleep apnea is strongly linked to obesity. And yeah, he says it's his muscles that are the problem, but it seems rather convenient to blame that when he admits he's overweight and suffering from this complaint where that's known to be a huge factor. I guess you could say that a hidden silver lining of the medical industry taking so long to fix his problem is that it'd give him time to explore that alternative...
I've heard that learning to play the didgeridoo will strengthen these muscles. Just google didgeridoo and sleep apnea and you will get several results. I have no idea if it works, but it sounds like more fun that wearing one of those machines.
The "True Hacker™" way: step1, reverse engineer the pulse ox usb protocol, step2, build a DIY CPAP machine, step3, release everything as open source/open schematics.
This isn't about FDA regulations[1] or tort law[2]. It's about the American medical system being a corrupt racket.
1. The FDA will approve nearly anything. For example, very flexible user-managed insulin pumps.
2. A jury of retards will convict if the plaintiff is sufficiently pathetic. Assuming you have reasonably good intentions and reasonably clear documentation, tort liability is just a roll of the dice.
The textbook OSA patient is a middle-aged man with a short, thick neck. OP is a middle-aged man with a short, thick neck. I'll bet dollars to doughnuts that OP is also hypertensive. In such a presentation, there is a very simple initial prescription - lose weight, drink less alcohol, quit smoking, get some exercise, see me in six months. In nearly all cases these simple lifestyle changes cure the OSA, yield a huge array of other health benefits and cost nothing. CPAP is only indicated if either the patient still has symptoms after reducing their neck circumference, or is somehow unable to lose weight.
The only thing that went wrong in OP's case is that his primary physician yielded to demand for a quick fix, rather than making the correct prescribing decision. OP would rather sleep on a respirator than improve his lifestyle. I'm not blaming him, it's a cultural problem, but it's one that will kill us all and lumber us with an impossible burden of healthcare costs.
Consider this: The leading cause of limb loss in the developed world is type 2 diabetes. Mull that thought over for a moment, let it percolate. Most cases of type 2 diabetes are preventable through simple lifestyle changes. Most cases of dysvascular amputation can be prevented by better management of blood glucose levels. People are having their feet cut off because they are unable to appropriately manage their most basic physical needs. That thought is what disturbs my sleep.