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> once they break, it's game over

This was on my mind the entire time I read the article. People are having their lives opened up by responsive pumps; some of them are even children who will grow up without ever having to manually manage each blood sugar swing. But the entire setup depends on scavenging outdated pumps and importing unapproved devices. It's deeply scary and depressing to think of where they'll be left if those pumps fail before an approved solution hits the market - or becomes similarly affordable.

Even if closed-loop pumps are approved and affordable at that point, the loss of control will represent a real step backwards for a lot of people. I don't have easy answers, but realizing that this is how things work is chilling.



> It's deeply scary and depressing

Yes. You have no idea.


What kind of effort do you think it would take to make an open-source functional copy of one that you would trust? Presumably if doing that the reverse engineering may have to be black-boxed and the designs presented as research, to create some legal cover.


Honestly, I think this should be quite doable. These guys [1] built a pump based on a stepper motor and an arduino, in order to replace expensive peristaltic laboratory pumps.

[1] https://www.instructables.com/id/Open-Source-Peristaltic-Pum...


If you look at mikeselectricstuff’s teardown of an omnipod, its quite simple.

It can also quite easily kill you in your sleep if you mess up the implementation, so ymmv.


Being poor is waiting for biocapitalists to decide your condition is profitable enough.


Can you please make your points substantively and not as flamebait, when posting to HN? Flamebait just leads to shitty threads.

https://hackernews.hn/newsguidelines.html


It's an ongoing reminder that the Silicon Valley point of view isn't the only—or best—one.

I grew up dirt poor in the Deep South. My wife is diabetic. People need the perspective. If that's flamebait, maybe I'm not the one who's in the wrong.

Also it seems like you're ignoring your own "don't post shallow dismissals" rule.


[flagged]


Like the ones who've raised insulin prices thousands of %? Those ones? They're gonna make pumps for diabetics cheap?


Only possible because of regulations and monopolies granted by the state.


I can't compete with them because the state protects them. Liberate me from the tyranny of IP law and I will save you.


To do that though we'd need to solve the problems of manufacturing bandwidth (for-profit drug manufacturing as it exists now wouldn't work in a patent-free world) and drug discovery (a large amount of which occurs in for-profit environments that seek to file patents). How do you address that in a pure-capitalism system? Drug discovery is incredibly expensive.

My personal preference would be to set a hard time limit on drug patents (insulin is so old that it should have gone generic decades ago, but the drug companies cheat) and ban the government & universities from selling patents/derived patents to for-profit companies (insulin, for example, was one of these cases). A hard time limit makes it possible to manufacture things like generic insulin but companies can still keep developing and monetizing new treatments. I don't think that would probably fix things in the long term though, they'd find ways around it. Banning patents from leaving government/university hands would mean more new treatments would be developed using public funding and then any company could manufacture them and compete on the merits.

There are so many opportunities for drug companies and medical care organizations in general to cheat patients - you don't have the freedom to shop around for alternative prices and quotes if you need an expensive therapy Right Now so that your liver doesn't shut down. How can you protect people in that position just using the Free Market? There have to be regulations of some kind, so which ones?

One popular suggestion lately is to just nationalize health care, because the government can tell pharmaceutical companies what it's willing to pay and if they want to charge 5000% more they can pound sand. It's my understanding that some countries have also just started ignoring patents and manufacturing their own drugs, which seems like another option. Could either of those solve it here, though? Who knows. Likely not as long as lawmakers love drug companies and patents.


Manufacturing is commoditized. The bandwidth exists in the generics factories of India. They're able to retool fast and get out high quality stuff pretty fast.

Discovery is a problem, but GlaxoSmithKline is only $200 billion dollars. The government can easily afford drug discovery grants.

Therapy that involves human beings is tough and I don't think I have an answer. But drugs are different. If I can buy cheap generics from India, I should be able to. If I want, I should be allowed to resell. If the government wants to say "FDA-certified" on some, so be it. For the rest, let the people decide.


Let's be very clear who we're talking about here, Martin Shkreli: https://arstechnica.com/tech-policy/2018/07/shkrelis-former-...

By acting like a parody of an evil capitalist combined with a youtuber's penchant for stupid stunts, he's made a lot of people now believe (not without foundation) that all drug pricing is an arbitrary ripoff. He is now in jail for a mostly unrelated securities fraud.


I said insulin and meant insulin. Insulin prices have skyrocketed over the last decades beyond any point of comparison without any significant change in the quality or manufacturing process.

As you say though, this is not true of all drug pricing. However, given we're talking about insulin pumps for diabetics, it's reasonable to assume they'd be priced based on the same philosophy as insulin, no?


Shkreli is a gaudy distraction, the same way Jordan Belfort was a gaudy distraction from much quieter fraud and mislabeled risk.

You're absolutely right to focus on insulin. In addition to the obvious relevance to diabetes pumps, it's the perfect example of how pricing isn't based on high costs of drug discovery or manufacturing. The basic market pattern people expect still holds: newer formulations cost more than older ones. It's just that the older formulations never get cheaper; contrary to all economic logic, their (constant-dollar) prices have risen over time. That doesn't bode well for any other step in the diabetes management process.


Shkreli is just the only one dumb enough to say out loud what other pharma executives keep to themselves. His drug pricing strategy is not unique, unfortunately.


You mean the capitalists who gave us this nanny state?


If you think capitalists are the sole source for a nanny state you're unaware of history


Capitalists created all of the pieces of technology in use here. Bashing them seems really out of line.

Getting devices approved by the FDA is extremely expensive and time consuming. The DIY guys are doing great work, but they have not done this. An actual company such as Medtronic could not do what they have done as they would get shut down by the FDA.

The US is the only industrialized country that does not have the English Rule, which says that if you sue someone in court and lose, you pay their court costs. As a result, trial lawyers make a lot of hay suing medical companies. There's no strong disincentive to see what happens if you go to court. This is another reason medical companies are very conservative when releasing equipment for use.

So, we have capitalists producing technology despite all of these hurdles, and yet somehow you blame them when they take a while to get things into the market?


Contrary to your belief, the entire asset of technology known to mankind was not all invented due to capitalism. We had a lot of political systems throughout our past.

Patents, and copyright, are only in existence because of government's law. Without such, you could still live in a perfectly capable society (with capitalism as its political system, but not necessarily).


The pumps and monitors and smart phones being used by the DIYers in this case were all produced by capitalists. Without these things, the DIYers would not be able to do what they are doing.

The capitalists got these devices to market despite the regulatory processes of the FDA, which are expensive and time consuming.

What this story highlights is that the regulatory process has created a situation where only corporations with big pockets can generally play in this space legally. What the DIYers are doing is not legal. It is definitely moral, but not legal.


Your complaint falls on unsympathetic ears because these pumps are quite within the capability of open source to design and manufacture.

The fact that no one has done so speaks volumes.


.. but not within their capability to get approved for sale.




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