LWN: Comments on "An open-source artificial pancreas"

Access to insulin

Wol — Wed, 13 Feb 2019 18:05:11 +0000

> That was in fact proposed, but then it was pointed out that this led to effective denial of healthcare to people not in work and/or whose employers will not pay when the system is under any sort of stress at all

Hmmm... I was thinking along the lines - like with the air ambulance example - of the money being diverted from other budgets.

I know it's tricky, but surely it's not beyond the wit of man to come up with some way of the DWP (Department of Work and Pensions, responsible for sick pay) working out how much someone is going to cost on sick pay, and then paying that money to the NHS for a "private" operation if that is going to cost less. So it's funded from a completely different budget to that for the old/unemployed.

Cheers,
Wol

Access to insulin

nix — Sat, 09 Feb 2019 22:05:59 +0000

Allow people who are on sick pay to jump the queue to get them back to work ... especially if they or the company will chip in some money.

That was in fact proposed, but then it was pointed out that this led to effective denial of healthcare to people not in work and/or whose employers will not pay when the system is under any sort of stress at all (e.g. all winter, every winter). This includes many old people, who tend to vote and vote Conservative, so the Tories acted and very rapidly the not-at-all-politically-influenced think-tanker's suggestion happened to be withdrawn. Funny that. (The think tanker used to work for... a US HMO! And went back to work for an HMO shortly afterwards. One of the other suggestions in the same report was that HMOs should "assist" with healthcare provision "in this time of crisis". Funny that.)

Access to insulin

Wol — Thu, 07 Feb 2019 17:54:01 +0000

Sounds a bit like the UK system in some ways. Apart from the fact that the system is creaking at breaking point (because of similar crazy beliefs like trying to keep costs down by keeping wages down, so rather than employing nurses directly they are forced to buy in agency nurses at four times the cost ...) healthcare is readily available and not bad.

But there are easy ways to bring in money that are ignored. Allow people who are on sick pay to jump the queue to get them back to work ... especially if they or the company will chip in some money. Allow people to have private rooms and public healthcare if they want to pay for it...

I'm sure there's plenty more easy money saving fixes if only political dogma didn't get in the way ... our air ambulance system survives on charity money, yet getting a seriously injured patient to hospital an hour earlier saves more money in intensive care than it cost to fly the ambulance - so why isn't some of that saved money diverted to the air ambulance service?

From what I've seen of the Australian system (not a lot :-) I get the impression that it does a very good job of providing affordable health care with choice. But "choice" is a dirty word among patients here because we are being pushed to choose for ourselves based on no evidence whatsoever, and my personal experience is that (a) there is little choice and (b) if you're not happy it's very hard to switch.

Cheers,
Wol

Ignorance is Strength - but noise is stronger

nilsmeyer — Wed, 06 Feb 2019 10:28:06 +0000

> Agreed, however this is only a work-around, not a fix. We don't all want to live in "a cabin in the woods", especially not so those of us who would like... healthcare

I live in a country where healthcare is somewhat functioning, even or especially for the poor and for families (their healthcare is funded by the taxpayer, e.g. me). There are a lot of other issues but this luckily isn't one of them, if I get sick for a longer time my life is still ruined but not irreparably so. Politics to me is a waste of time, I have no power to fix (or change) anything so it's not worth expending a lot of energy getting that belief reinforced. There are enough other areas in my life where improvement is possible.

Access to insulin

marcH — Mon, 04 Feb 2019 15:15:32 +0000

> US could move to a system along the lines of what everyone else is using and actually save a lot of money, which should appeal to fiscal conservatives but somehow doesn't.

First there are the corporate lobbyists pretending to be fiscal conservatives.

Those aside, there's the more or less unconscious belief that if it's not american, then it cannot be better. How could it be? Especially not for something business related. End of story I'm not really listening to the (boring!) numbers you're trying to tell me. We've seen demonstrators with signs like "We don't want healthcare like in country X", replace X with some of the countries with the most efficient healthcare system.

Then "fiscal conservatives" are all about paying less taxes. How could a more centralized system result in less taxes? That's just not possible, or at least not without less healthcare.

There's also something a bit more logical and not directly money-related: the deeply rooted desire to be *free* to choose my doctor/insurance/etc. Granted the current system grants very little freedom (unless you're insanely rich and don't care being in-network) but surely the current system can be fixed while a single payer system would make that worse.

Of course there are people who know better, however all the above is very common.

Access to insulin

anselm — Mon, 04 Feb 2019 09:46:22 +0000

The US manage to spend at least twice as much money per capita for healthcare (and that is excluding what individual people contribute out of pocket) than all other developed nations; even so, you can get pretty good healthcare in the US if you're rich but if you aren't things can get dicey pretty fast. The weird thing is that the US could move to a system along the lines of what everyone else is using and actually save a lot of money, which should appeal to fiscal conservatives but somehow doesn't.

Access to insulin

tao — Sun, 03 Feb 2019 13:38:01 +0000

"The stories I've heard of people being denied medical care are from the socialized medicine countries, with people (with money) traveling to the US to get what they couldn't at home."

The only such stories I've ever read have come from right-wing publications that, not surprisingly, "just happen" to be opposed to single-payer universal healthcare.

Is there any first world country (other than the USA) where people go bankrupt because they cannot afford healthcare? I mean even with health insurance you still pay ridiculous amounts.

Access to insulin

mpr22 — Sun, 03 Feb 2019 12:22:14 +0000

It seems that there is in fact a problem with Americans being unable to afford insulin.

Access to insulin

giraffedata — Sun, 03 Feb 2019 04:57:14 +0000

Do you know of anyone dying in the US because he couldn't afford insulin?

The welfare system is well developed in the US, especially for medical care.

The stories I've heard of people being denied medical care are from the socialized medicine countries, with people (with money) traveling to the US to get what they couldn't at home.

Ignorance is Strength - but noise is stronger

marcH — Fri, 01 Feb 2019 17:30:12 +0000

Agreed, however this is only a work-around, not a fix. We don't all want to live in "a cabin in the woods", especially not so those of us who would like... healthcare

An open-source artificial pancreas

joey — Fri, 01 Feb 2019 15:21:48 +0000

Video is also available here: http://mirror.linux.org.au/pub/linux.conf.au/2019/c1/Wedn...

Ignorance is Strength - but noise is stronger

nilsmeyer — Fri, 01 Feb 2019 11:10:19 +0000

> I know! systemd, Code of Conduct, security labels, stone tablets,...

I haven't debated text editors in a while. I need more hair to split! ;)

> OK, you solved the problem... for yourself.

To be able to help others you must first help yourself.

An open-source artificial pancreas

nilsmeyer — Fri, 01 Feb 2019 06:28:16 +0000

> Yes that's one of the problems in general. However in this case insulin is 90 years old and threre's a generic available... in "almost" every country.

But there are vastly improved forms of insulin (ultra short acting for example) that enjoyed patent protection for a long time. After that you can still patent the method of application. Epinephrine was first isolated in 1901, the price for the auto-injector EpiPen recently quintuplicated, arguably the product hasn't improved by that order of magnitude.

An open-source artificial pancreas

mmaug — Thu, 31 Jan 2019 22:53:52 +0000

From last year's FSF LibrePlanet conference: https://media.libreplanet.org/u/libreplanet/m/freedom-dev...
Dana Lewis participated along with Rachel Kalmar and Karen Sandler to talk about Free Software and Free (as in Freedom) Devices.

NB 2019 LibrePlanet March 23-24th in Boston https://libreplanet.org/2019

An open-source artificial pancreas

jani — Thu, 31 Jan 2019 16:42:00 +0000

Couple of nitpicks. I believe nowadays almost everyone uses insulin analogs for which the patents started expiring only recently. They're roughly 20 years old, not 90. The alternatives (that just started coming out) are called biosimilars instead of generics because they're similar, not identical.

Ignorance is Strength - but noise is stronger

marcH — Thu, 31 Jan 2019 16:37:47 +0000

> though I don't find [LWN] boring

I know! systemd, Code of Conduct, security labels, stone tablets,...
:-)

> I'm mostly ignoring the news and politics these days except for the things that directly affect my life

OK, you solved the problem... for yourself.

An open-source artificial pancreas

marcH — Thu, 31 Jan 2019 15:06:21 +0000

> competition is very often excluded through patents.

Yes that's one of the problems in general. However in this case insulin is 90 years old and threre's a generic available... in "almost" every country.

An open-source artificial pancreas

jani — Thu, 31 Jan 2019 13:56:55 +0000

Further reading: https://www.hanselman.com/blog/TheExtremelyPromisingState...

An open-source artificial pancreas

joekiller — Thu, 31 Jan 2019 13:07:29 +0000

In some ways this tech parallels the smart phone. Loopers now are like Ham radio operations and Medtronic is the car phone. We'll get to iPhone but it takes time...

An open-source artificial pancreas

joekiller — Thu, 31 Jan 2019 13:04:49 +0000

Medtronic has an AP but it only uses their stuff. Tandem has one coming to market that uses our algorithms. Being in the industry (literally working on this tech for 2.5 years, not too long but long enough to know something) it is partially that no manufacturer knows how to monitize AP software without building a walled garden.

Tidepool forked Loop (iOS based AP) and plan to use their user provided stats to attempt an FDA certification. FDA cares about patient risk. If you can't show that you've covered the bases then you'll get scrutinized. They seem to be coming around to attempting to certify a fork of open source stuff but then openaps and loop need the hardware manufactures to play well which is all currently reverse engineered.

My observation on open source AP data is that it is very self selective and reinforcement of good numbers is somewhat behavioral moreso ie they would manage their stuff better anyway.

I work for Dexcom, formerly TypeZero and we are working on this every day.

An open-source artificial pancreas

nilsmeyer — Thu, 31 Jan 2019 12:17:59 +0000

> There's also one specific, _developed_ country where insulin is available but only if you're well insured or very rich because its price was multiplied in a few years.

It's not like the insurers are making Insulin so you still end up paying more, it's just filtered through your insurer.

> This reason is simply the economic dogma that "competition and free markets" can solve absolutely any kind of economic problem even in the overwhelming evidence that competition doesn't always happen and in the face of prices 10 times cheaper across the border in "less free" Canada with its socialist hence dangerous healthcare system.

Healthcare is no free market and competition is very often excluded through patents.

An open-source artificial pancreas

dottedmag — Thu, 31 Jan 2019 11:31:38 +0000

This is a striking example why open source, open protocols and open data matter.

Also, from the tone of the talk they have a community that does not exhibit destructive behaviours: the lives of contributors are at stake, so egos take a hitch.

Ignorance is Strength - but noise is stronger

nilsmeyer — Thu, 31 Jan 2019 10:19:17 +0000

> Focusing on "per capita" numbers (e.g., tax evasion is 1000 dollars/person/year) would be a start but of course the opposite is happening.

I think that hides the true extent of the egregious tax evasion employed by some, especially corporations with great control over the narrative (Google, Facebook, Amazon). Using a per capita number would bury that information suggesting that everyone is evading taxes.

> (I'm just realizing why I'm paying for LWN: it's not just about tech. It's also for the refreshing "oasis of boring truths")

That's an interesting term, though I don't find it boring. I'm mostly ignoring the news and politics these days except for the things that directly affect my life, though I employ professional associations there for lobbying. Being constantly bombarded with terrible things that are happening without being able to affect any change can leave you with a sense of dread and helplessness.

Reading LWN often leaves me feeling better and more informed, even the comments are usually high quality.

Ignorance is Strength - but noise is stronger

marcH — Thu, 31 Jan 2019 09:15:51 +0000

This is what I think Orwell missed: there's no imposed "ignorance", no censorship, no secret and no conspiracy today. There's no need to block or hide true information. Drug price increases, tax havens, mass extinction, climate change, income inequality, lobbying money... all the numbers, facts and science are there in plain sight, googlable even. Let them flow. But they're just *boring numbers* and can't beat any irrelevant news drama or outrageous propaganda for attention. No need to censor science, drowning it in noise works much better. Among others it provides deniability. Orwell foresaw the propaganda but he missed the tremendous power of the noise. He focused on the soviet approach and the permanent threat to be sent in the goulag for just one sentence. That's not needed because barely anyone is listening to your sentence anyway, especially not when it's made of unemotional, quantified and boring facts.

Even in the most extreme situations there's still no need to hide evidence, just lie on camera and on the record pretending you're not seeing what's in your face! Then quickly switch to something else. Anything's possible as long as you know how to generate emotions on TV. Plus many journalists prefer a debate to overwhelming evidence, they convince themselves it's "fairer" to have two points of view. More drama.

Less than 100 people own half the total world's wealth, so what? What do these abstract numbers mean for me? Yeah, sounds like a lot but such hard science is actually exciting for no more than one minute or two and then back to my uninterrupted stream of emotions on twitter/facebook/cable news.

Focusing on "per capita" numbers (e.g., tax evasion is 1000 dollars/person/year) would be a start but of course the opposite is happening. Just one fun example: nutritional information in the US is all there but in... metric units! Hilarious. Oh, and the %RDA is missing for sugar, did you notice? Of course you can find it on the internet and do the math yourself, nothing's stopping you. No censorship needed!

(I'm just realizing why I'm paying for LWN: it's not just about tech. It's also for the refreshing "oasis of boring truths")

An open-source artificial pancreas

eru — Thu, 31 Jan 2019 07:57:47 +0000

Orwell didn't miss that. One of the Ingsoc party slogans in the book was "Ignorance is Strength".

An open-source artificial pancreas

marcH — Thu, 31 Jan 2019 06:50:15 +0000

Forgot this.

"A single death is a tragedy; a million deaths is a statistic"- guess which one draws public attention? Much, much better than fake news: *irrelevant* news.

1984 was prescient but it missed one thing: "Newspeak" isn't really required. To control people's emotions you just need to make sure they don't know how to count, that's enough. No numbers no science.

An open-source artificial pancreas

jani — Thu, 31 Jan 2019 06:41:03 +0000

I didn't mean to imply the certification guarantees the devices would actually be better. Just that it is one reason slowing down development and deployment. :p

An open-source artificial pancreas

marcH — Thu, 31 Jan 2019 06:33:45 +0000

There's also one specific, _developed_ country where insulin is available but only if you're well insured or very rich because its price was multiplied in a few years. Otherwise you die:

https://www.google.com/search?q=insulin+cost+usa

Some new sort of natural selection?

This reason is simply the economic dogma that "competition and free markets" can solve absolutely any kind of economic problem even in the overwhelming evidence that competition doesn't always happen and in the face of prices 10 times cheaper across the border in "less free" Canada with its socialist hence dangerous healthcare system.

I'm in awe of OpenAPS but it's unfortunately pointless when you can't afford the insulin in the first place wherever lobbies are totally "free" to disregard human life for pure profit.

Oh and of course it's not just insulin, all drugs are affected.

An open-source artificial pancreas

marcH — Thu, 31 Jan 2019 06:15:06 +0000

You mean *that* sort of medical certification?
https://www.google.com/search?q=implant+files+scandal

An open-source artificial pancreas

Sesse — Wed, 30 Jan 2019 23:23:27 +0000

This is pretty hardcore.

I only wish they could get authorized access to the device, so that it's only open to the user, not to everyone :-/

An open-source artificial pancreas

nilsmeyer — Wed, 30 Jan 2019 22:51:43 +0000

> There are some naysayers who proclaim that the project is not made up of medical professionals or programmers; "who do you think you are to do this?"

Of course this flies in the face of professional and commercial interests. Imagine patients helping themselves instead of paying a doctor or device manufacturer. A degree and license is by no means the ultimate indicator of competency.

An open-source artificial pancreas

nilsmeyer — Wed, 30 Jan 2019 22:47:01 +0000

I think as a matter of public safety the code should be open source.

An open-source artificial pancreas

jani — Wed, 30 Jan 2019 21:53:14 +0000

It's not just that. IIUC the protocols to talk to the CGMs and pumps have all been reverse engineered. The article says they can only use a specific pump *because* it has a vulnerability. This industry isn't really known for opening up their specs. I guess it's fear of liability and competition.

But it's not like the certified devices are without bugs. And they don't exactly get software updates. It's just a different kind of scary.

An open-source artificial pancreas

jani — Wed, 30 Jan 2019 21:42:13 +0000

There's one commercial hybrid closed loop device that was certified in the US and Europe only last year. The rate of development is slow as molasses, obviously in part because they are medical devices that need to be certified. The open source projects get away with stating that they're for educational and informational purposes only.

An open-source artificial pancreas

thithib — Wed, 30 Jan 2019 20:51:01 +0000

> The OpenAPS "rig" can communicate with both Android and iOS devices. "You can text your pancreas ... you really can", she said, or use and an assistant like "Siri" to send input to the rig.

That scares me, even if according to openaps.org's FAQ, the safety mechanisms are expected to prevent malicious behaviors.

An open-source artificial pancreas

Cyberax — Wed, 30 Jan 2019 20:06:06 +0000

Why isn't there a commercial certified device for this?