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Comment by ganafagol | Hacker News Reader

Looked cool, until i scrolled further down. Not only is any info lacking on how it's done and what the status is. There are even a bunch of "community projects" listed. Among them "Real Vegan Cheese and Narwhal evolutionary genomics" and "Mushroom Lovers". Not judging those, but that's far off from "let's provide the poor with safe and affordable insulin". Feels dishonest, tbh.

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Their "What We Do" page has some more detail, but not a whole lot: https://openinsulin.org/what-we-do/

> To produce the protein needed for insulin, we need to grow microorganisms with a bioreactor and purify the protein from the culture with a protein purification system (FPLC). Proprietary examples of this equipment come at a very high initial cost and with high ongoing costs of support from the manufacturers. Our goal is to develop easy to manage, easy to repair, and affordable equipment to sustain local and community-built insulin production. > Our FPLC design is in the early stages, and we are steadily developing mechanical and electrical designs to detect UV-C absorbance and manage the concentration of two buffers via peristaltic pumps and a mixing chamber. We plan to use Arduino microcontrollers as well as the Raspberry Pi, and the finished device will make use of the open-source Ender 3 3D Printer to facilitate automated fraction collection with G-CODE input. The bioreactor design makes use of quite a few commercial off-the-shelf parts and is ready for prototyping.

Their blog was much more insightful to me, here the Spring 2021 Progress Report: https://openinsulin.org/our-blog/spring-2021-progress-report...

Wouldn't it be easier to raise funds and lobby Congress to get laws passed to make insulin basically free in the US and defacto pushing that globally?

Trying to make your own has a lot of steps that need to go right or people die. You also have to deal with regulators.

> and defacto pushing that globally?

There is no need for a global push; prices outside the US are substantially lower already. See https://pharmanewsintel.com/news/insulin-prices-8x-higher-in...

There are other benefits besides price to open source.

Such as?

Here's one that isn't about the insulin itself, but is about diabetes.

Some diabetics use a "continuous glucose monitor" to read their blood glucose levels regularly. The information to that device is fed into an app on your phone (for newer devices) that visualizes the data for you.

It doesn't just visualize though, it can also give you alerts. This is an incredibly useful feature! Unfortunately, at least in the ones I have experience with, the metrics they give you to be able to alert on are not good enough. For example, you'd think that "give me an alert when I go below x value" is a useful alert, and it is. However, the app I use only lets me set two alerts: a "low" alert, with the values 100 to 60, and an "urgent low" with the values 55-40. (both are in increments of 5.) That is useful, but what if I want three alerts? What if I want a non-5 value? Sure, you can argue that this isn't necessary, but if it were open source, I would be able to build something to do exactly what I want.

Okay, so that's the first issue here. But here's the real issue: the absolute value is useful, but what's more useful is the rate of change. What I truly want to be able to do is set an alert that says "hey if this suddenly drops 10 points, give me a high priority alert" no matter the absolute value. There have been situations where I've seen a sudden downturn from ~180, dropping by 15 each time, and you don't even know until it crosses that 100 threshold. Likewise, I've seen alerts about it going low because it went from 101 to 100. One of those is very serious, and one of those is irrelevant.

This stuff would significantly increase quality of life. And it's one tiny part of this whole picture of this one condition.

I know exactly that pain! I wish that there was some way for an alert if I'm dropping super drastically.

I'm actually working on reverse engineering the dexcom share api in my free time to create something similar to sugarmate where you can get control of your data and do what you want with it.

But for the time being, have you considered using share2nightscout[0] and grabbing the info into your own control so then you can do the alerting and analysis that you want?

[0]: https://github.com/nightscout/share2nightscout-bridge

I have not personally seen this! I will check it out, thank you!

Taxes outside the US are far higher.

Yet somehow, we pay more for far worse care. Funny how that works.

This may be true for some places but I can tell you with certainty that they are lower in Switzerland especially for lower incomes.

Your Taxes are insane high for medium wage workers and practically non-existent for the wealthy. How is anyone ever supposed to climb the ladder like that?

> Your Taxes are insane high for medium wage workers

A single person earning $200k in the state of Washington pays ~$52.5k in federal income tax and social security. An effective tax rate of 26%. Is that insanely high?

You may want to update your idea about what is a medium wage worker:

https://www.statista.com/statistics/203183/percentage-distri...

I am well aware $200k is nowhere near the median wage.

The person I replied to wrote “How is anyone ever supposed to climb the ladder like that?”. Seeing as no one is “climbing the ladder” from earning a median wage their whole life, I looked at the tax rate for an “upper middle” wage salary (which anyone can earn even if their parents had 0 wealth).

Since tax rates for a median salary are much lower than this, I am not sure how it contradicts my point.

Yeah pity those poor fools with their.. stress free access to insulin and.. never having to watch a loved one die from not being able to afford insulin. But yeah, taxes.

By pretending that this is some kind of common occurrence, you are engaging in fearmongering. You're 10X more likely to be killed by lightning in the US than you are to die due to lack of insulin.

According to this (sympathetic) website[0], ~4 people in the US die every year due to a lack of insulin. Meanwhile, ~40 people in the US are killed by lightning strike[1].

[0] https://rightcarealliance.org/actions/insulin/ [1] https://en.wikipedia.org/wiki/Lightning_strike#Epidemiology

These things are never cut and dry. This is presenting these absolutely clear-cut stories, but it's not like this sort of thing is accurately tracked in any way.

One in four people who have diabetes report that they take less than they should due to cost. This has knock-on long-term health effects that can cumulate in an earlier death than would otherwise happen. Those effects will never be captured in the way that lightning strikes can be captured.

Others die who were never formally diagnosed, and so wouldn't be captured in statistics like this.

It goes on and on.

>You're 10X more likely to be killed by lightning in the US than you are to die due to lack of insulin.

But 100,000x[0] more likely to lose a foot due to lack of insulin than by getting it cooked off by a lightning strike.

[0]Estimated. Not sure if they even track loss of limbs by lightning strikes since it's such a rare occurrence but the diabetic, poor and footless can be found in just about any major city.

Yet somehow the US spends the most per person health care...

($10,623.85 per capita vs Switzerland $9,870.66 vs Norway 8,239.10)

And manages to NOT cover 30 million people...

(10+% vs Switzerland, Universal, vs Norway, Universal)

No matter how you look at it, we spend more on private insurance than anywhere else in the world and manage to cover less people with it.

On top of that, medical debts are the single largest cause of bankruptcies in the US.

(Third overall worldwide ranking for US vs 100th for Switzerland vs 118th for Norway)

And despite (oh mer ghurd socialism!) paying the most, we rank among the worst for first world countries.

(37th for United States vs 20th for Switzerland vs 11th for Norway)

TLDR: We pay more for less and get worse care overall.

If I could trade in my private insurance premiums for taxes and get better care as a result without the risk of bankruptcy, why wouldn't I? Bonus, I wouldn't lose my health insurance if I had to switch jobs. We are one of the only countries in the world that tie health care to employment, which is detrimental to everyone.

The US system is FUCKED.

https://worldpopulationreview.com/country-rankings/best-heal...

https://worldpopulationreview.com/country-rankings/medical-b...

https://www.cnbc.com/2019/02/11/this-is-the-real-reason-most...

https://aspe.hhs.gov/system/files/pdf/265041/trends-in-the-u...

https://data.worldbank.org/indicator/SH.XPD.CHEX.PC.CD

Healthcare outcomes, quality of care, and wait times are worse in the US compared to countries with universal healthcare, as well.

There's always the people who chime in about "but, but, but private insurance means you don't have to wait 6 months to have surgery!"

I had to wait year. US Health Insurance is a fucking nightmare to deal with that the largest allocation of man hours within a hospital is billing between multiple networks. Imagine the savings on that alone if coverage was universal.

I waited on a six month long waiting list to see a pretty common type of specialist in the largest metro area in the US. Every practice and doctor I got in touch with had a similarly long waiting list, even if I paid in advance with cash. Some people will die waiting on that list.

> lobby Congress to get laws passed to make insulin basically free in the US and defacto pushing that globally

You think the US should make insulin free and then use their leadership to encourage other countries to do the same?

Do you realise other countries already make insulin free and it'd be the US that would be following their leadership if it made it free?

Shh! You can't get Congress to vote for "catch up with the rest of the world", you need to phrase it as "America leads the way to freedom!".

Yes thats the right way, making Healthcare free for all is the only way, US has to learn from Canadians, Brits or dozen other EU countries.

"free" is relative. For instance we have a tax on chronically ill people here called "eigenrisico" (literally your own risk) which is not a tax but is meant for people to not seek help unless it is absolutely necessary and then pay for the cost. Some things are excluded but as soon as you need more than basic help or any medicine it comes into play. So it's a tax on being ill in all but name since it resets every year.

So "free" comes in many forms, not all single player.

I'd be wary of calling it a tax. As you pointed out it's an amount large enough to warr off spurious medical needs and small enough that if you're really injured or suffering, it can be extremely helpful and is a miniscule part of your medical fees.

What's broken is the huisarts system where any efforts to get specialized care when you're in pain must pass through your GP. This often leads to a longer waiting period that can be excruciatingly painful for some.

In the US it’s called “needing a referral.”

The literally translated equivalent in the US is a “deductible”.

“Eigenrisico” yes, but the Huisarts system is what GP was referring to as being analogous to “needing a referral”.

It's called a deductible in usa.

https://h4i.nl/2018/11/30/health-insurance-understanding-eig...

Does eigenrisico apply to each event separately or is there an annual limit?

We have a similar idea here in Norway. I pay about 20 euro to visit my GP and I pay for drugs. An MRI costs me about 25 euro. But there is a limit of about 200 euro per year. Anything I pay over that will be refunded in the tax settlement for the year and if I have a chronic need for drugs I will be given a frikort to exempt me from paying for them at the pharmacy.

In NL eigenrisico works like you describe (well, actually, it doesn't: after the eigenrisico you don't pay for stuff anymore, the insurance company covers the cost directly and you are not even billed), but is 350 euro, annually

They have that in the US as well. It's called a copay I believe and it depends on insurance but is also do prevent people from going to seek help if it's minor.

Did your intentionally leave out the annual 'basic healthcare' package of around 1500 euro you are required to have? It's not free.

Though with all other subsidies etc. it's effectively not that different from an additional income tax. To the point where I wonder why they don't just make it part of the income tax.

Certain communities such as the Amish have in the past and will in future go to DC and protest. They see it as an attack on their way of life which it is. It is just that there way of life is build on perpetuating the way of life of the Amish.

Well yes I was talking about the Netherlands where you have a mandatory insurance, guaranteed to be the same amongst all insurers and for which the cost is subsidized for people with low or no income.

At that point it's basically an income tax.

because sure, we all know that health care and drugs cost nothing to make. i want to have free food too and free houses too, please add that to the list.

Works great here. It is paid for in taxes and the government doesn't take a cut every step, so the tax isn't that high.

Also, food stamps etc are already a thing, and insulin is necessary to, like, live.

The middle class in europe pays 40-50% income tax rates.

Don't see a single country [0] where that's true, and that's for average wages, which tends to be higher than the median wage. Mind you, the first infographic includes employer taxes as well, which should be left out of the discussion.

[0] https://en.wikipedia.org/wiki/Tax_rates_in_Europe

I live in Portugal and 40 to 50% on the middle-class is actually low-balling it by ignoring things like VAT, social security, the employers side of income tax and a bunch of other taxes.

you guys are great at refuting those people with facts. Keep at it!

free housing where?

This isn't a matter of free healthcare; it's a matter of getting rid of bullshit patents and licensing problems that allow companies to pull off their absurd prices in the first place.

Insulin should be free for everyone to produce and to sell, then prices would go down on their own.

Of course, this doesn't mean the USA shouldn't implement "free" healthcare like we have in europe; just that that's not what the insulin problem comes down to.

Insulin has no patents anymore though. But making insulin reliably at the right quality is no easy feat. Thats why you dont have millions of insulin suppliers worldwide.

Would be US only VS an open solution accessible internationally.

Plus good luck getting political traction (especially against lobbies) faster than do it yourself

Big Pharma says no. The American solution is go to Mexico or Canada (can't right now).

make it easy to freely trade drugs between countries and prices will plummet.

Personally, I value human life much more than I value corporate profit.

There's a status report on the blog https://openinsulin.org/our-blog/spring-2021-progress-report...

But I agree, for being "open" there's a distinct lack of documents, schematics, inventory, videos, pictures, etc.

I wonder if it's patent law that's keeping them secretive. There's a good chance they're trying to reverse engineer the insulin and concerned they may be infringing on manufacturing process patents etc. Once they've got a working formula it'd be easier to change it up to avoid these patents. Big pharma is notoriously litigious and I can see them taking any opportunity to nip this in the bud.

> I wonder if it's patent law that's keeping them secretive

Many insulin forms are no longer patented. Last year patents (at least in Europe) expired from some quick acting insulin variants and as a result insurers here are forcing everyone to cheaper generics. Side effect: Not all have the same solutions, though the insulin is the same. Despite what the insurers say, YMMV if you switch due to different solutions being present.

So I do not think patents on the product is a real issue. Maybe patents on the production method.

> cheaper generics

Interestingly, they're really not much cheaper, either. On the order of 10% cheaper, I believe.

There's a research exemption to patent law in the US, but that might not apply if they're publishing the details with a how-to manual.

Making Insulin is entirely possible todo if you have the right yeast strain it could manufacture Insulin instead of alcohol, i would presume they are attempting to do something similar. The problem is in order to be accepted as safe medicine it has to be certified, QA etc ... by the time they do that it would have Become Big Pharma they are trying to fight. Without a proper plan it will fail. Insulin isnt some home remedy one will consume. It has to be intravenous which makes it problem.

If they really, really want to do this, I did read something years ago about a woman trapped in a city because of political stuff and having to go get, I think, organ meats from the butcher to come up with a homemade insulin source.

The thing I read did not go into specifics and I don't recall much. I think maybe it was an American woman trapped in an Asian city with political drama interfering with supply lines for critical items like insulin.

I don't know how you would find this info, but I believe it actually exists. We just don't really bother to try to record and distribute that type thing because no one gets rich off of it.

Irrespective of the actual mechanism they employ, though i think genetically modified Yeast is the most cost effective way to do this, the real concern will remain safety.

That depends in part on exactly how this fresh meat source of insulin was used. If it was something consumed as part of the diet and not injected, then safety becomes much, much less problematic.

The story gave no details on how she handled it. Just that she did under circumstances where insulin was simply not available and she lived to tell the tale.

There’s no mystery to that. Before modern bioengineered insulin the major type available was porcine insulin. It’s very similar to human insulin. It must be injected like any other insulin (as a simple protein it's broken down quickly in the digestive tract).

https://go.drugbank.com/drugs/DB00071#identification-header

Now and then it comes up and diabetes discussion groups, what would we do in the event of a widespread disaster without access to the pharmaceutical system? Pig pancreas. From what I recall it requires a very large amount of pancreas, perhaps several organs per dose, and a centrifuge.

Thanks!

The safety has to be guaranteed. For that the labs have to be certified where the Insulin is made or extracted, that costs money. It cannot be a ghetto lab operation like the manufacture of Illegal drugs.

You apparently are not understanding my comment. If the procedure the woman used is more akin to a secret family recipe -- here, eat this -- then, no, no certification would be required.

To whatever degree you can take care of your health with diet and lifestyle such that you don't require needles and other invasive equipment requiring sterilization, life is vastly simpler, better, cheaper and safer.

> To whatever degree you can take care of your health with diet and lifestyle such that you don't require needles and other invasive equipment requiring sterilization, life is vastly simpler, better, cheaper and safer.

There is no degree to which this is true for people with Type 1 diabetes.

And likely ineffective.

If there was a secret, simple, safe, inexpensive way to treat Type I diabetes that is also effective there would have been no need for Banting and Best to have killed all those puppies. Unless, of course, you think there is a very effective conspiracy by Big Pharma to cover up that one secret that they hate. I guess they could also hire the Big Fake firm that did the moon landing campaign and the Building 7 demolition.

Most likely it's complicated, inconvenient and time consuming. The big thing modern medicine seems to have solved is that popping a pill or taking an injection has a lower barrier to entry in terms of skill and knowledge than other approaches.

If you care enough to learn other approaches, it's sometimes* possible to get superior results compared to the "plug and play" medical answer.

* (I actually want to say "often" but I don't really want to argue it. "Sometimes" seems less likely to get me dragged into pointless drama.)

There is no "family recipe" to deal with Type 1 - if you don't get injectable insulin you die. It was a sure fire killer from when it was first identified (ancient egypt) to Banting and Best.

Insulin from animal sources is not as good as bioengineered insulin and it takes a lot of animals to make it.

Insulin from animal sources is not as good as bioengineered insulin

Respectfully, we may not actually know that. It's somewhat unusual for us to go back and re-test older methods after replacing them with a new-fangled thing and sometimes things change.

Actual natural quinine is proving to be more effective at treating malaria than synthetic derivatives. Various strains of malaria have grown resistant to the synthetics while natural quinine still works.

Modern drugs tend to strip things down to a single chemical and sometimes the more complex natural remedies have benefits that we are unable to capture with our superior ability to isolate components and refine them.

“In wine there is wisdom, in beer there is freedom, in water there is bacteria.” — Ben Franklin

In the past hundred years, there are things that have fundamentally changed about the world -- such as just the simple ability to somewhat reliably deliver clean water to ordinary people in developed countries -- and we may someday be able to revive older treatment methods and improve upon them to get something better than what those once were and also better than what we currently have.

These days, people with serious conditions pretty routinely do things at home that involve sterilizing instruments and other procedures that most people imagine can only be done in a hospital setting. A modern home can have assets, such as clean running water and various kitchen appliances, that would be the envy of many a scientist not that many decades back.

I hope we find better answers for type 1 diabetes soon.

>> Insulin from animal sources is not as good as bioengineered insulin

> Respectfully, we may not actually know that.

We really do. While it's possible that animal sourced insulin may be better for your body long term (doubtful), bioengineered insulin is FAR superior in every noticeable way. Just the fact that you don't need to take it an hour ahead of time and make sure that you eat an mount that matches how much insulin you took is a huge benefit.

Insulin is not administered intravenous, but subcutaneous.

Not really relevant to the topic of open source insulin, but insulin is sometimes administered intravenously in a hospital setting as an emergency measure to control potentially-fatal levels of hyperglycemia.

Not just as an emergency measure; if you've got IVs set up anyway (e.g. because you're treating hypokalemia) then it may be more convenient to drip insulin in rather than administering it subcutaneously.

Also as a means of murder and in the past as a means of torturing mental health patients. If you really want to be pedantic.

The vegan cheese and other stuff is not part of Open Insulin. The block of text in which that is printed is a blogroll for a meetup of Counter Culture Labs where Open Insulin is also presenting.

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