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The gatekeeping in the CPAP field is so insane. 1. Yes, we should regulate manufacturers intensely. 2. No, we shouldn't regulate to whom companies should be a
by lysace 2y ago
The gatekeeping in the CPAP field is so insane.
1. Yes, we should regulate manufacturers intensely.
2. No, we shouldn't regulate to whom companies should be allowed to sell them. The defaults are good enough for most. Provide an easy to use control for max pressure and people will figure it out. Perhaps a knob?
I claim: During the past decade, the risk of being maltreated by a personally set-up CPAP unit has been far, far smaller than the risk of not being treated at all. (Ways to access these menus have been been shared online for 10+ years, many use them.)
I wonder how many premature deaths happen every year because of this - including secondary victims from traffic accidents.
These things should be $500 mass-market consumer units that you pick up at Target, Walmart, etc.
- a_vanderbilt 2y agoThe health industry as a whole is insane. I support the use of regulation and law where it ensures safety and efficacy but in the U.S. it's currently a patent and legal minefield. So much of it comes directly from special interests who want gatekeeping to keep out new/disruptive competition.
- smaudet 2y agoOn the other side, as a consumer, I don't really want "new/disruptive competition" - I want stability and a legal guarantee my rights aren't being trod all over. Large companies e.g. Google/Apple are just inherently untrustworthy in this regards, smaller overseas ones are no better (little to no regulation). So please, no, stay the ** out of my health, thanks.
- IOT_Apprentice 2y agoGoogle, Meta et al ARE FAR worse than anything might complain about Apple. Between the sleep apnea and hearing aid/hearing loss features you should be applauding these features to the world. As a consumer I have family members that will be leveraging these features immediately, including myself.
- a_vanderbilt 2y agoYou can have gains in both today if certain issues are addressed. Innovation doesn't mean a lack of liability or responsibility for negligence. In the U.S. you already have relatively minimal rights in healthcare. Your stability and legal guarantees are already compromised compared to your worldly neighbors. I too distrust tech companies in healthcare due to their differing motivations and organizational cultures. I want the red tape to go away, but I also want strong regulations and safety nets to ensure the drugs and devices we are prescribing to people are effective and safe.
- smaudet 2y ago> I want the red tape to go away, but I also want strong regulations and safety nets I'm not certain those goals can be both met. You can have innovation, but some red tape is necessary. Of course you could get into arguing that "not all red tape is made equal", but deterring cheap "innovation" from a tech shop trying to make a quick buck is absolutely necessary and useful. The barriers exists for very good reasons, not only as you said they have a different motivation and organizational culture, but they have different qualifications.
- jjk166 2y agoThat's the cool thing about competition though - you can continue spending your money on the current super expensive option if you like. But others who may not value that stability can choose something else. Personally, I consider big pharma companies the absolute least trustworthy, and I would never choose to purchase anything from them if I would not literally otherwise die. Regulations are not fundamentally bad, but the current situation is obviously a case of regulatory capture.
- makeitdouble 2y agoWhen it comes to healthcare, that's a lot more complicated though. Wider competition with less control/accuracy will often mean that fads get more profitable: for instance "gluten free" sells enough that it makes sense for random makers to slap the label on their product even if they don't really care to follow the most rigorous rules. Letting the market decide will result in the minority (those actually affected by the products) to get shafted, as more and more companies will move to the lower standards they can get by, instead of keeping high priced products that don't sell as well. That doesn't mean that the status quo is great, but at least we need to be pretty cautious on the direction we want to go. "Let's just do something and see how it goes" isn't a desirable strategy when people are at risk.
- jjk166 2y agoYou can have the regulators choose who can slap a "gluten free" sticker on their product but still give people the freedom to buy products without the sticker. Competition does not mean getting rid of or even lowering standards, just that if those standards are misaligned with real people's needs we're not stuck with them. Maintaining a known-flawed status quo is not being cautious. People suffer severely every day from inaccessible medical care. We can always return to the current system if we don't like a change, but until we actually try it we don't even know how much damage the status quo is doing.
- ugh123 2y agoSo you're cool with the pace of innovation and value-per-cost that existing medical companies provide?
- BoiledCabbage 2y agoIs the alternative the way that Meta and Google treat privacy, or most tech companies treat security? Then sure as rain I am.
- blackeyeblitzar 2y agoStability doesn’t always help. For example Phillips had to recall their latest CPAP machines because of disintegrating foam that patients potentially inhaled all night for months, with unknown long term health effects. Who can trust big companies that avoid scrutiny and accountability just due to their size and power?
- wkat4242 2y agoYeah I have two of those machines that i bought myself (with prescription). It's been 4 years and Phillips has yet to replace them. They also don't answer any kind of contact about it. I'm glad the local authority gave me a resmed but I still want those Phillipses replaced.
- fragmede 2y agoWho do you want in your health though? Someone's gonna be in there, so how do they develop trust, or is anybody in that space automatically bad?
- jrockway 2y agoI'm just happy that the "service mode" screens are easy to get to. Changing the ramp-up from 10 minutes to 45 minutes made a big difference for me. (I'm honestly surprised someone doesn't make the vendors require a 1000 character passphrase that locks you out of the device after 2 failed attempts.)
- wkat4242 2y agoOh i turned the ramp off altogether. I really hate the ramping because the pressure is too low at first
- hombre_fatal 2y agoSame. I like instant pressure.
- tlb 2y agoThat should have been done from day 1. Now, however, there are 1000s of doctors who make fat stacks prescribing CPAP machines, and they'll fight tooth and nail to not lose their whole business.
- TMWNN 2y ago> Changing the ramp-up from 10 minutes to 45 minutes made a big difference for me. What change did you see in your sleep routine?
- glompers 2y agoNot GP, and hoping that GP sees and answers. I hope there's some insight beyond what I've got, but just from my experience: Sometimes having it blasting at the pressure you need while trying to get drowsy makes that process uncomfortable, but, after you've gained drowsiness it's not going to interrupt you and wake you (unless it starts leaking pressure against your face)
- IOT_Apprentice 2y agoThe car salesman who we worked with leasing our Lexus had a bad flu and didn’t wear his mask ONE night and died in his sleep. We found out when we went back to the dealer. He left wife and a special needs son. I lie my father before me suffer from extreme sleep apnea. I want to make sure my sons have the detection this will bring.
- Suppafly 2y ago>The car salesman who we worked with leasing our Lexus had a bad flu and didn’t wear his mask ONE night and died in his sleep. My dad's friend died like that, not a flu, but was traveling overnight and didn't take his machine and died in his sleep. Although I almost wonder if this heavy reliance on cpap machines causes people to lose some innate ability to recognize when they stop breathing or at least delays the normal instinct to wake up and breathe.
- phickey 2y agoThey don't advertise themselves as such, for obvious reasons, but there is at least one online CPAP dealer in the US that will sell to you without prescription verification. (Why should I wait 3 months for an appointment, drive an hour round trip, and $50 copay, to renew my rx so I can buy more masks, which wear out after a year or two?)
- jzig 2y agoWhat to search for? Link?
- rootusrootus 2y agoI don't know who will do it without any kind of prescription, but it's pretty trivial to get an at-home test from someone like 1800cpap and they'll write a prescription based on the results. I bet they have a nearly 100% rate of writing prescriptions, given the obvious conflict of interest.
- bluGill 2y ago> I bet they have a nearly 100% rate of writing prescriptions, given the obvious conflict of interest. Even if they are honest I'd expect near 100% - people who don't expect they have issues are not going to be getting the at home test in the first place.
- firesteelrain 2y agoI used Lofta and it was about $189ish. Then, I got the subscription from them and bought my CPAP from CPAP.com using my HSA.
- binalpatel 2y agoAgreed with both - #1 especially: https://www.propublica.org/article/philips-kept-warnings-about-dangerous-cpaps-secret-profits-soared https://www.propublica.org/article/philips-kept-warnings-abo...
- simcop2387 2y ago> 2. No, we shouldn't regulate to whom companies should be allowed to sell them. The defaults are good enough for most. Provide an easy to use control for max pressure and people will figure it out. I'm iffy on the machines themselves for this, mostly because I'm just ignorant about the risks and potential issues. But this absolutely should be the case for the consumable/wear items that go along with it. There's been a lot of push-back on retailers being able to sell things like the masks, the hoses, filters, etc. to the public at large that can't be used without a machine anyway. > These things should be $500 mass-market consumer units. Fundamentally yes. I'd be fine with it being something as simple as the local pharmacy can keep them in the back and you bring in the prescription from the doctor and they file it away saying that you're allowed to buy/replace it if there's some reasonable evidence that they need some modicum of control for safety of people. It shouldn't be any harder than getting some antibiotics. As it is now I'm using a 10+ year old machine because I've changed insurance companies multiple times since and my current one wants a full sleep study before they'll sign off on anything at all (like allow the doctor to prescribe or let me order one). And they wouldn't tell me if they'd cover the sleep study or not.
- titusjohnson 2y ago> I'd be fine with it being something as simple as the local pharmacy can keep them in the back and you bring in the prescription from the doctor Just curious, why do you think a Dr. should be involved at all?
- bluGill 2y agoYou should have a Dr who keeps track of all your medical information. I want my doctor to know each time I take an Aspirin or put on a bandage. Most of the time those are meaningless activities (and I don't tell my doctor), but once in a while there is something more going on and I need to be forced into the ER.
- s5300 2y ago[dead]
- wilsonnb3 2y agoI generally agree with you but even people with a prescription who have sleep apnea have a lot of trouble using their CPAP consistently and correctly, even after it is titrated by professionals in an overnight session. Some people obviously are capable of diagnosing and solving their own medical problems and are willing to learn and do the work but most people aren't. I don't think that opening up CPAPs to the masses would suddenly "solve" sleep apnea, most people will still need to go through a similar process that exists now. Regulation that streamlines the involvement of insurance providers would probably be enough IMO, they are the real reason it is difficult to get a CPAP most of the time.
- deleted 2y ago[deleted]
- lysace 2y ago> Regulation that streamlines the involvement of insurance providers would probably be enough IMO, they are the real reason it is difficult to get a CPAP most of the time. The obvious solution is to bypass the insurance providers. Also: when it comes to fitting masks to faces and figuring out the optimal pressure rates - these seem like pretty obvious application of machine learning algorithms, don't you think?
- rootusrootus 2y ago> these seem like pretty obvious application of machine learning algorithms, don't you think? Anecdotally, my impression is that most CPAP users are using APAPs at this point, like the very popular Resmed AirSense 10. Titration amounts to giving it a pretty wide range and letting the machine itself figure out the right pressure. It's not a complex learning algorithm, but seems to do the job.
- wilsonnb3 2y agoI think APAP's are more about comfort and less about effectiveness, although making them more comfortable to use does make them more effective. The algorithm is more about detecting that you aren't asleep and thus don't need the full pressure at the moment and less about altering the target pressure setting on the fly. I could be wrong though, I use is a bipap which works a bit differently than CPAP or APAP.
- renewiltord 2y agoAbsolutely, but most safety departments will happily do low probability kills over massive population over high probability kills over low population. You can lose thousands to the former to save 10s to the latter.
- BeetleB 2y ago> During the past decade, the risk of being maltreated by a personally set-up CPAP unit has been far, far smaller than the risk of not being treated at all. There have been over 500 confirmed deaths due to the Philips CPAP. The number of unconfirmed deaths would be an order of magnitude higher, in my opinion. Thing is, the CPAP issue could be argued for both sides: "See how a small manufacturing defect could cause so many deaths? We definitely need to regulate this heavily!" OR "See how many people died due to Phillips because they didn't have alternatives?"
- lysace 2y ago"1. Yes, we should regulate manufacturers intensely." These were units prescribed by licensed people. The issue here was the manufacturer. As such I'm not sure what your complaint is.
- rootusrootus 2y agoThe Philips CPAP deaths were caused by a faulty machine, not by anything the users did wrong. Whether it was bought OTC or prescribed by a doctor would have no impact.
- eddieroger 2y agoI'd argue the problem is gatekeeping access to medicine, since I don't think this is unique to CPAP. It should be easy to get in to a doctor, receive a test and diagnosis for sleep apnea (or anything), and proceed to treatment. Regulation is an after effect of the system. Maybe sane defaults are good most of the time, but no-one should be in a spot where they have to rely on defaults for care.
- maxglute 2y agoYeah you should be able to rent them instead of wasting months diagnosising or trying to find time in a sleep lab. Take it home for a whirl, if you sleep much better, and other QoL indexes improves, congradulations.
- bluGill 2y agoThe machines themselves should be able to figure this out. Automation is good.
- deleted 2y ago[deleted]
- blackeyeblitzar 2y agoIn other countries you can buy a top of the line automatic self configuring APAP off the shelf. Here you have to pay (through insurance) thousands for a sleep study that is completely useless, since you can just have your machine figure out the right pressure. The cost, the delay in treatment from inconvenience, and the repeated burden of prescriptions every year is an insane government enforced protectionism of otherwise useless “doctors” and companies with no innovation.
- wkat4242 2y agoYes it took me so much time and money to get diagnosed. I wish I could just have been able to buy my cpap. I often change the setting myself, it's just a hidden key combo anyway. Really helps great against snoring too. And the max pressure is 20mm h2o which is really not a lot.
- Suppafly 2y agoIt's the same with hearing aids, they are finally getting around to understanding that people can figure out if a device is helpful to them or not without needing a licensed doctor involved.
- wcunning 2y agoI generally agree with this, as a small-L libertarian. However, the results of the Philips Respironics problems killing people and badly damaging lungs would indicate that we need some amount of better tracking and observation of things like this. See this old HN discussion: https://news.ycombinator.com/item?id=39223982 https://news.ycombinator.com/item?id=39223982