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Comment by lysace | Hacker News Reader

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.

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The 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.

On 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.

Google, 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.

You 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.

> 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.

That'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.

When 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.

You 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.

So you're cool with the pace of innovation and value-per-cost that existing medical companies provide?

Is the alternative the way that Meta and Google treat privacy, or most tech companies treat security? Then sure as rain I am.

Stability 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?

Yeah 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.

Who 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?

> 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!"

"See how many people died due to Phillips because they didn't have alternatives?"

"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.

> As such I'm not sure what your complaint is.

What made you think I was complaining?

> The number of unconfirmed deaths would be an order of magnitude higher, in my opinion.

That's an estimate. Not a complaint.

Mkay.

The 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.

Not only that, but it wasn't a problem with the pressure settings or anything related to the function of the device, it was chunks of the sound deadening foam breaking off and people inhaling them in their sleep.

Isn't that the one that disintegrated into your lungs during normal usage?

They 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?)

What to search for? Link?

I 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.

> 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.

I used Lofta and it was about $189ish. Then, I got the subscription from them and bought my CPAP from CPAP.com using my HSA.

I'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.)

Oh i turned the ramp off altogether. I really hate the ramping because the pressure is too low at first

Same. I like instant pressure.

That 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.

> 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?

Not 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)

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. 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.

>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.

I'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.

Agreed with both - #1 especially: https://www.propublica.org/article/philips-kept-warnings-abo...

It'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.

> 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.

> 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?

You 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.

> I want my doctor to know each time I take an Aspirin or put on a bandage.

What do you think your doctor will do based on this data? How do you think your doctor will filter out the signal from all the noise? (Is there even a signal?)

> but once in a while there is something more going on and I need to be forced into the ER.

Do you have a concrete example here?

Look up the symptoms of a heart attack. Everyone is also a sign of something miner.

as for telling the difference we need a lot of help there.

My experience is that doctors don’t even care about the data they have now. There are a lot of charts and info already available digitally to them and they mostly skim things and make basic diagnoses that are unhelpful and obvious. I keep finding myself in the position of pointing at them at things in the data to get better care. I think doctors are mostly a tax, and a barrier. At least primary care. Specialists also need to be managed in the same way though, and even in an ER situation I’ve seen them be very casual in their understanding of complex situations.

There is too much data for a human to know it all. We need to give doctors help. When I way I want my doctor to know, that shouldn't be understood as read the update every time it happens. I want tools to analyze all the data and look for patterns - which may or may not exist - and if something "interesting" shows up alert my doctor to take a closer look.

Most of what doctors do should be basic checklists - this is the same thing millions of other people have and should be treated by checklist in best practice. It is the exceptions where you are that 1 in a million case and so there is no checklist that you need doctors to read all the data and think.

In 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.

Yes 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.

Absolutely, 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.

Yeah 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.

The machines themselves should be able to figure this out. Automation is good.

I 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

I 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.

> 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?

> 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.

I 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.

I have personal experience with the Airsense 10 and it doesn't detect sleep/awake, as far as I can tell. At least not for me; it starts at low pressure, ramps up over a set time to the bottom of the range, and then adjusts as necessary. Low flow or an apnea event will get it to increase the pressure. Sometimes if you are breathing kinda slow lying there awake you can trip it up and feel it start pulsing the pressure to get more air moving.

To my understanding (no personal experience), Philips APAPs have a different algorithm to try and achieve the same goal, and are regarded as less aggressive about it than Resmed.

There's also a new Resmed Airsense 11 out but I don't know anything about it and what changed.

BiPAPs are definitely a different beast, for sure. My dad used one of those. Not automatic at all, right? Constant pressure, but different between inhale and exhale?

The pulsing is not to get the air moving but to see what kind of obstruction event it is. It's quite annoying to me and unfortunately it can't be turned off even in the full therapist menu :(

> The obvious solution is to bypass the insurance providers.

That is one solution but I think it would be better to make it easier for people to go through the current process rather than making them pay out of pocket (assuming that it what you meant by "bypass the insurance providers").

Assuming that we aren't going to also fix the entire American medical system, making it easier for people to use the insurance they already have to get a medical device they need seems like the best approach to me.

> 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?

Yes but I don't think that means we should take the human expert(s) out of the loop.

I rather quickly changed the pressure settings on my bipap in the hidden menu after the titration but many, maybe most, people aren't like me and need there to be someone they can just say "this isn't working for me" to instead of being left on their own.

> 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.

A $200 CPAP with a knob that lets you control pressure absolutely would solve sleep apnea for much more people than gatekeeping it behind an insane price + having to make a doctor's appointment through insurance just to get them to turn the knob for you.

Because those who can't turn a knob themselves would still be able to schedule an appointment with a knob-turner without making the rest of us have to do it as well.

I got a hand me down CPAP from my dad, bought a mask off Amazon, played with the knob a bit, and within a week I cured my central sleep apnea. It's just not hard for anyone who doesn't think the doctor has divine capabilities over what they could do themselves (turning a knob).

But instead we infantilize everyone by requiring them to do the equivalent of taking their car in for a licensed professional to check their oil dipstick. And, of course, making them or their insurance pay $300 for the pleasure.

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