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Open Insulin Foundation

openinsulin.org

567 pointshmmx3243 comments

My daughter is insulin dependent.

We live in the UK - which has a fantastic free provision for diabetics, my daughter has a Diasend artificial pancreas (on her phone + a sensor on her arm and a pump for the insulin controlled by the app). This gives her very very high levels of control and flexibility.

However, when covid hit I was really scared because I thought that if things went really wrong (beyond loo paper being sold out) there would be no possibility of me protecting my daughter - I simply had no means to provide insulin for her that don't depend on a large scale modern pharma supply chain.

Any way that was viable for insulin to be made in a shed or a garage would be huge from my perspective because it would give me an option in the case of a SHTF situation - right now I haven't got one. If things go bad, my daughter dies - no if's no buts. I know (in my heart) that the reality is that if SHTF then I will die too, but the sheer hopelessness of my daughters position is really hard to take.

Could you just store more insulin as a stop gap?

You can store insulin but not in large quantitites and it is a hugely delicate process to synthethise it in the first place. You can "biohack" it to a certain degree (it is how it was first discovered and manufactured after all), but getting a good purity end product that aligns to nowadays' standards is quite difficult and you can't do it in a shed. And with insulin purity and consistency in the product are paramount seeing how small the necessary doses are.

I understand the issues that come with dependence on pharmaceutical companies, but this is what they do. In today's world we are highly dependent on supply chains and that includes both toilet paper and insulin.

We have two years of insulin in our fridge, I'm curious what you mean by you can't store large quantities?

Does that work? Over time insulin flocculates and becomes inactive. I suppose my info is ~10 years old from when I worked on insulin biophysics, it's possible contemporary formulations are more effective at maintaining stability.

(Not your parent)

Expiration dates vary wildly based on a number of factors, which you probably know, but for completeness: opened vs unopened, refrigerated vs non-refrigerated, brand to brand, etc.

It is true that it becomes inactive over time, but those rates vary. And people know that manufacturers put expiration dates based on liability. Yeah if it says that it expires after a year, that's because they know that 2 units is 2 units after that long, but it's variable enough that you're not going to just get rid of something so expensive and precious when it's likely to still work just as well, and even if it's not "just as well," still be reasonably effective. It's a slow, steady decline, not a "this goes from fully potent to useless at this moment in time" kind of thing. Yeah maybe you'll give yourself four units and it'll actually be effectively 3.5; that's still better than zero.

> It's a slow, steady decline, not a "this goes from fully potent to useless at this moment in time" kind of thing. Yeah maybe you'll give yourself four units and it'll actually be effectively 3.5; that's still better than zero.

The process of flocculation itself is autocatalytic and therefore ~exponential. Though the k factor might be low enough and minor deviations in the exact mechanism that are formulation-dependent might to make it look quasi-linear for quite a long time, followed by a precipitous drop.

I doubt you can stockpile. Pharmacies have checks in place, heck,even my local supermarket flagged when I tried to buy too many otc painkillers.

At least in the US, stockpiling is absolutely common to a degree. You are absolutely correct about checks, they make it even hard to get supplies when it's legitimate at times, but what ends up happening is people skimp in order to save some away, and build up a reserve over time.

You can but it goes bad like milk.

Most insulin has a very long shelf life unopened and refrigerated.

US here. I only managed to do it because of a loophole. My wife has the beetus, and with insurance we pay $40 a month, without insurance it is about $600 for a month, so stockpiling it is effectively impossible.

Luckily during her last pregnancy my wife was prescribed substantially more insulin than she'd previously need for a month because the pregnancy was messing up her blood sugar, it stopped once she had the baby, but we still have the same dosage right now, so we are accumulating a small amount. That being said, it was the only way we could figure out to do it.

Thanks for sharing your experience, it must be really hard as a parent in times like this

This is a real problem for people dependent on medicine.

My wife needs specific immuno-depressants to keep her alive (or at least not drastically decrease her health) and since we live in France it is not a problem.

When COVID hit I had real concerns about the manufacturing keeping up, but also about other mechanical devices she needs. These were at risk because they are manufactured in a normal factory (non-critical state infrastructure kind). Everything was fine but these are the moments you realize how reliant one is on technology, supply chain etc.

How cool would it be if you could keep something like a sourdough starter (maybe a shelf with a half dozen jars that need tending 1-2 times a week) that would continuously produce the medications people need to live in their own homes.

It would almost certainly be more of a hassle than getting it from a pharmacy, and purification is probably a tricky step, but I think we're just a decade or two from this potentially becoming a reality.

Would be incredibly egalitarian and empowering to individuals.

I had the same thought in 1989 following Fleischmann and Pons' "discovery" of cold fusion. I dreamed of football-size reactor everyone could have at home and be done with electricity dependence.

More than just electrical dependency. The output vs size/weight would be a very big revolution in engineering.

It doesn't even need to be a large-scale breakdown. Extreme weather is becoming more and more of an issue, which often leads to things like loss of power. When you use a refrigerator to keep your medication cold, a sudden "you're going to lose power until further notice" introduces significant logistical hurdles.

I share these sorts of worries with you. It's hard.

That seems obvious once you point it out, but yeah, I never really considered how tough it would be if a natural disaster knocked out the fridge for a few days for temperature-sensitive medicine.

Like in Texas earlier this year. (Though I suppose it was cold enough you could stash stuff outside…). I wonder if there any teeny little thermoelectric coolers that you could keep for an emergency and run off a bunch of batteries…

As it so happens, I live in Austin...

Yeah, in theory you can stash stuff outside, but that also isn't as simple as it sounds. While I take some issue with the milk analogy below, in this case, I think it fits. Imagine you have a gallon of milk. You lose power. You go stash it in the snow. Okay, it's kept "cold" for some value of cold. That "some value" matters, because with this gallon of milk, you can't smell it to see if it's spoiled, and if something goes horribly wrong, you die. It's not a binary thing as it sounds immediately. "Cold in the snow" is not the same as "kept at the same value I can control exactly in my fridge."

Ha, yes, I do suppose medical-grade peptides need a bit more rigorous temperature control than that frozen yogurt I buried in the snow during a brief power outage…

Yep. And this whole thing is a microcosm of the entire situation: the details really, really, really matter. It's quite easy from the outside to not realize how much they really, really matter.

(It is also true that it is not the case that if it is not continuously absolutely refrigerated, it immediately goes bad, which is one reason why the milk analogy gets strained. Milk expires far, far faster, and in a more binary way than insulin goes bad... but freezing it is extremely bad, so... analogies are hard.)

I live in the North and I've been thinking about building an ice box in the basement that stores cold from outside during the winter – mostly for energy-saving purposes, but it would be interesting to try making a system with precise temperature controls.

You can buy 'cold chain' stickers that indicate whether they have exceeded certain temperatures. Could be useful for prepper diabetics. (And for practicing and testing different ways to maintain cold chain in emergency-like conditions)

Though I suppose it was cold enough you could stash stuff outside…

That may work for some things, but freezing insulin destroys it.

That’s easier to protect against though. You can install a standby generator, or run a small portable generator to keep the fridge going (or any other medical equipment). Or install solar + battery system.

But if you can’t buy more insulin then that’s a real problem.

You mean something like this?

https://www.bestbuy.com/site/cooluli-classic-0-1-cu-ft-mini-...

Runs in 120v, 12v and even 5v (Eco) mode.

In a pinch I would say a 12v based battery setup should keep something like this running for a while. A few of my emergency power lithium battery packs had cigarette/car ports on them.

If SHTF, then we should think about old-school methods based on animal extraction. The process is involved, but still approachable.

My daughter did a project in her high school chemistry class on the entire process, describing the steps involved - I don't have that paper handy, but if a high school student can work it out it's probably available elsewhere. She later told me that this project was part of her post-apocalypse-family-survival-plan;)

FWIW: https://www.canada.ca/en/health-canada/services/drugs-health...

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.

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.

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.

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”.

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.

It's called a deductible in usa.

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

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.

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

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.

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

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

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.

free housing where?

Would be US only VS an open solution accessible internationally.

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

> 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.

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, 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.

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!".

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.

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

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.

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.

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.

> 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.

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!

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.

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.

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.

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...

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.

This kind of projects are totally alien for me, because of the paid-by-taxes Healthcare I have in my European country.

Aren’t there any initiatives in some US states to make socialized healthcare?

why is comment this downvoted?

Perhaps because it makes an bad faith statement/argument using the standard meme of "We in Europe are so advanced with our free health care vs. you Americans that have to (over) pay for everything" that is overused in any almost any discussion about healthcare cost on HN by some Europeans.

Pointing out that it addresses a artificially created political problem is unpleasant but hardly be classified as a “bad faith statement”.

Well, it’s not that we (Europeans) are “advanced”. It’s more that having a socialized healthcare program is common sense for us. A for-profit company cannot be left in charge of treating patients as there are few patients that could need expensive treatments. No company would want to treat this people.

Other point I would like to make is that our healthcare is not “free”. It’s paid by high taxes be are obligated to pay to the government (the taxes are as high that I don’t even want to know the exact amount in my case but is around 25-30% of my salary).

The thing is though, taxes in the US aren’t any lower, if you include healthcare premiums as “tax”, at least for middle class people.

Depends where.

I wonder how well would things turn out if people were given the choice to opt out of public healthcare. You don't get taxed on it but also cannot use it (except in ER situations obviously).

I'd imagine that most people would stay signed on but it does give people who either distrust public institutions or just don't feel like they would benefit from a public option a choice.

Full disclosure: I am firmly on the side of socialised medicine.

We have public hospitals already. People happily opt out. They’d opt out even harder if there was a tax break.

Yes but that's not really the same thing as real nationwide public healthcare. Going by my experiences in the UK at least, people tend to have a lot of pride with them even if they also will complain about issues with it.

It's considered political suicide to even openly discuss dismantling the NHS which is why even the Tories continue to tip toe around the issue even after having been in control of government for more than a decade at this point.

As a concrete example, German programmer here. 16% of my income go to taxes, another 12% go to mandatory insurances (excluding healthcare), and about 6% go to health insurance. So about a third of my income goes to mandatory stuff and taxes, but when my son broke his arm in the schoolyard, the treatment was completely free for us. Not sure how those numbers transfer to the US, though.

You would have paid less in taxes and it would have been free besides maybe a small ish deductible although you typically hit that through doctors appointments, drugs etc. The people who are screwed by the american system are the poor people make too much for medicaid. Everybody else generally likes their insurance.

Initially, I had the same thought, then it (embarrassingly) struck me that this could help people across the globe that don't have access to inulin. It's an amazing initiative that I will donate to, but it genuinely disgust me that it had to come to this. The greed involved by the global healthcare industry that led to someone having to create this project is unconscionable.

> Aren’t there any initiatives in some US states to make socialized healthcare?

Some initiatives have been put forth at the state level, but it's essentially impractical for US states to do it without active federal cooperation (which itself is practically unlikely without the same faction controlling the federal levers of power that would federally implement socialized medicine, making the state programs unnecessary.)

Same here. I does not cost much even if you get it yourself but I guess some US law exists that forbids sending from EU to the states.

You can sell, but you need FDA marketing approval. Also you need to be clear of patents. Currently FDA exclusive marketing approvals and patents are the big hammer that keep the market uncompetitive. (The FDA grants exclusive approval for first movers, for a few years. It's not exactly great, but that's usually the smaller problem. The bigger is the patents.)

Also, currently due to the enormous money in US healthcare (the medicine market very much included) a lot of R&D costs are recouped there using these exclusivity strategies.

The biggest problem is that there are many effectively uninsured people in the US, and they are the sufferers of the aforementioned emergent system. (Even if there many "state pharmaceutical assistance programs", many people who would need it don't know about it, and even if they do the paperwork burden is substantial, and obviously it's just a stopgap measure.)

Walmart sells insulin for $25 per vial [1]. There are cheaper offers, still.

The problem is there are newer formulations with advantages in terms of convenience, safety and durability. These require R&D to develop and are not universally available. (Diabetic friend had trouble finding his preferred formulation outside the U.S., U.K. and Sweden, for instance.)

We have huge problems with healthcare in America. But the insulin meme is misleading to the point of derailing discussions about legitimate reform.

[1] https://diabetesstrong.com/walmart-insulin/

"Diabetic friend had trouble finding his preferred formulation outside the U.S." In European countries, there are about 20 formulations available, all well below 10 USD per vial of which 100% is compensated by the obligatory health-insurance. There is no market for marginal improved, extremely overpriced medicine outside of pharma-marketing heavens.

> is no market for marginal improved, extremely overpriced medicine outside of pharma-marketing heavens

I am sure someone could have said that about the twenty-odd formulations you mention when they were novel and not yet manufactured at scale.

"There is no market for marginal improved, extremely overpriced medicine outside of pharma-marketing heavens."

There is, in Russia for example. But the most expensive I could find (Tresiba) costs 12 usd per cartridge (3ml x 100 units) [0].

[0] https://apteka.ru/product/tresiba-flekstach-609a3db8c93e31dd...

How many vials per day or month does a typical diabetic person need?

1ml has 100 units. You basically take your weight in kg in units per day. However if you are overweight or sick you need more because of insulin resistance.

One pen has 3ml in it. So if you weigh 70 kg, you go through one vial in 3-4 days.

So approx 250$ per month, which is a lot of money, but are people really considering to save on that and inject some backstreet cooked stuff?

250 USD per month at the minimum. You also need to purchase blood sugar test strips which also cost a considerable amount. You need to check BG levels at least 4-5 times a day (usually you check much frequenter than that).

People are willing to forego doses, reduce their nutrition to pay less. There are diabetics who die because they were trying limit their doses.

People also use Walmart insulin (insulin R), which us much much shittier than the modern insulins (fast acting insulins). It is much harder to control blood sugars with insulin R, because it's onset and clearing out levels are very long and inconsistent. You need to inject before you eat a meal, wait an hour, hope you don't get low and eat. You can survive on them but it's much harder.

People also use expired insulin (me included), because it doesn't expire 100%, its effects get less over time. People use second hand medical devices (insulin pumps), fix them themselves (because its out of warranty and they can't afford a new one), mod the devices by flashing open firmware so that they can do looping. Diabetics are used to gamble with their lives, because the pharma companies don't have our backs.

The real issue with diabetes is that you somehow survive, but if you don't have access to modern technology, you feel sick all the time because of ups and downs and you are much more susceptible to complications.

As a diabetic, you feel like a ticking time bomb.

People would definitely be willing to inject some backstreet cooked stuff. It's a life or death kindof thing. As a diabetic you leave so much things to chance that you probably simply won't care. Me at least, I am trying to survive, if I can't afford insulin and the only option I have is to use shitty insulin I'll take the chance. If I die, I die. Because I'll definitely die horribly if I don't take insulin.

I worked with a guy with diabetes. Hes about to retire around now.

The company we were working for was acquired by a VC backed larger entity who offered much less in terms of benefits. His out out pocket expenses increased quite a bit as the new entity self-insured and even the best health plan had really high deductibles and the coverage was not great even after that. IIRC it covered like 60-80%, its a bit foggy because I could basically never use it.

He was using blood test strips and injecting insulin because it was the only thing that fit in his budget. We talked about it very occasionally, I asked him if he could get the electronic insulin thing that attaches to your arm and talks to your iPhone, and he told me about the coverage and costs and he really couldn't swing the out of pocket.

This guy was pretty advanced in years and had controlled his diabetes pretty well, but I saw the inconvenience and sometimes normal forgetfulness affect him often. His mood would be unpleasant at times, and I could see that he was often not feeling ok. Eventually, his doctor had an old tamagotchi looking leftover electronic blood sugar monitor that he ended up giving him for free, I guess it was old enough it wasn't going anywhere. His doctor thought the diabetes could be better controlled and took it upon himself to try to get him to upgrade his quality of life.

He used that for a while and it was a bit janky but worked, I noticed his mood and demeanor improve quite a bit for a few months, this also improved our work, but he stopped using that because there was some upkeep on it that was also not covered in our plan. So he went back to the blood-finger-strips.

I felt pretty bad about this situation, this dude was stuck in a job that even I hated (and quit, nowadays I have BCBS from an actually good organization) because the old, acquired company had a really good deal: Employee Ownership. When the firm acquired and consolidated that company, they took on the employee ownership agreement. This was a huge chunk of this man's retirement, but the new deal required him to stay on in order to claim the benefits he had been planning on retiring with for 25 years.

He could definitely have quit and made more money with better benefits, but he would have lost his retirement strategy.

Stories like these are nightmare fuel. Hope he's doing well, now.

It was the same with me. I couldn't afford a continuous glucose monitor. I was checking my blood sugar 10+ times a day, because I was having hypoglycemia anxiety.

Even after I got a job and starting earning money, I hesitated getting a continuous glucose monitor because it costed so much. I was using the cheapest glucose meter that tested with blood, because the strips were cheap. It turned out that machine was inaccurate and my diabetes nurse gifted me a better glucometre.

I recently was able to switch to a continuous glucose monitor (the tamagochi type thing) and things got much better.

A vial and a pen are different. A vial has 10 units. I use between 1 and 2 vials a month. I weigh 70kg, I use about 40-50 units a day via pump [which is more efficient than a pen]. My prescription co-pay is $10 for the two vials of Humalog [a 30 day supply].

The insulin Walmart sells is not the best insulin, and the chemical composition of the insulin is important. Not all insulins are the same, and no everyone reacts the same to all insulin types.

That’s not “a meme”, a bad type of insulin can kill you or send you to the hospital.

The $25 type is of the R/N/L variety. The thing that sends you to the hospital with that type isn't it being "bad", it's ignorance. You need to be aware of the effectiveness curve (or whatever it's called) and take it / eat correctly based on that. It's not hard, it's just far less convenient then more recent insulins.

It's also a good idea to keep a sugar source available in case you can't keep food down for the amount of insulin you took (ie, you suddenly get nauseous after taking your insulin); which is also true of newer insulins, just less likely because there's less delay between taking it and eating.

In Russia all patients get their insulin for free thanks to mandatory health insurance (5.1% of your net salary additionally paid by employer).

If for some reason you would want to buy insulin, it would cost you 2-12 usd per vial/cartridge (3ml x 100units)

A cartridge of most modern European or American rapid insulin costs 5 usd [0][1] and the most modern long or ultralong insulins cost 9-12 usd [2][3]. Russian own insulins cost 2-4 usd per vial/cartridge.

Do you know why the same companies charge you at least 10 times more than a Russian citizen?

I wander what are the 'huge problems with healthcare in America' if overpaying 10 times for insulin isn't one of them?

[0] https://apteka.ru/product/apidra-solostar-5e32673ae911440001...

[1] https://apteka.ru/product/xumalog-5e327a1eae8baf00014d54fa/

[2] https://apteka.ru/product/lantus-solostar-5e32673a3d4c470001...

[3] https://apteka.ru/product/tresiba-flekstach-609a3db8c93e31dd...

What do unemployed Russians do for health care?

Greets from curious person in the USA.

Not sure about Russia but where universal healthcare exists, you don't lose acces to it when you don't work/pay.

They go do the doctor as they would normally do and when they start working again they'll start paying their share.

That's how it is in Spain. Also if you don't work, you don't pay the drugs, at least some of them. But the subsidized part of the price depends on your income.

Looks like Russia covers a year solid for unemployed people.

See reply above.

Oh, no, sorry, it's the same for everyone. I meant a year is how long they think one needs to use medication to avoid repetition of a heart attack, that was just an example. If one needs further help, one will get it.

Great. Thanks again.

Hi there!

They only need be registered as unemployed. The law [0] is in Russian but Google Translate does a good job [1], see 5.d

Free medical care in Russia is far from perfect, of course -- sometimes you have to wait for a month for an ultrasonic scan, sometimes they give you Russian insulin instead of Danish, but they will save you from a heart attack, install a stent and provide with necessary medications for at least a year.

[0] http://www.consultant.ru/document/cons_doc_LAW_107289/7e136d...

[1] https://translate.google.com/translate?sl=auto&tl=en&u=http:...

Thanks!

I hear about the EU a lot. It is nice to get some perspective from your part of the world.

Cheers

Isn't this an example of monopoly pricing?

I honestly don't know

Nobody pays list price in the US.

This is not true.

sort of true and sort of not.

If you are on some 'plan' then you are mostly likely not paying list. Your insurance company usually has cut some sort of deal with the distribution company. Usually that 'deal' includes not telling you about their deal and showing you only list price.

If you are not on a plan. Sometimes you can ask 'hey is there a no plan version' and sometimes they do have it. That can be hit or miss depending on who is working the register that day.

If you are not on a plan and they say 'nope thats the price' then you end up in that category.

What was stated was "nobody pays list price," and as you said: you can end up in that category. Yes, many people do not, but some people do.

For anyone who sees this, the $25 vial is for Novolin R, which has a longer absorption rate than modern analog insulins. It's a great option for people on low-carb diets or those who have food absorption problems since you have more time to react to lows and it matches slower absorption of proteins and high fat meals if you don't have an insulin pump that can handle that type of meal for you.

But there's also a new release from Walmart for an analog insulin was just announced a few weeks ago! It's a Novolog equivalent and what many people are using today with insulin pumps and diets that have fast absorbing carbs: https://corporate.walmart.com/newsroom/2021/06/29/walmart-re...

The vials are around $70ish US dollars and the pens are around $85ish. That's a wayyyy more affordable rate (50-75% less) than paying out of pocket for Novolog or Humalog. Also keep in mind that manufacturers also have programs to assist you with insulin costs if you can't afford it.

There probably are, but with a First Past The Post / Winner Takes All system, it's really hard to get it introduced.

Politically, one would require a majority of voters in BOTH parties to want socialized healthcare, due to the division of powers, gerrymandering, the broken presidential election system, and so on. You could have 70% of the population being pro-socialized healthcare, but if the majority of those rest in one party and in certain regions, there still wouldn't be enough to get the majority in the house AND senate.

If other things are more important, voters might even be for it, but not even show up to the polls or vote for candidates that are all about that issue, because some other, bigger issue (in the eyes of the voters) needs to be addressed.

Climate change is a good example in Europe. Depending on country, you can get the majority of people who say they care about it, but come election time they will:

- vote for a populist party that doesn't give two farts about it

- vote for the old, "stable" option that is closer to their core values but never actually does anything about climate change

- decide not to vote at all for whatever reason

The minority actually votes for a green party. That might slowly be changing, but change doesn't come quickly from within unless forced (COVID being a good example).

To be fair it's uncommon that any party get's the majority of votes in Europe and for example the German green party this election cycle is going take >2x of the votes they did last round hovering around 20%.

>> but change doesn't come quickly from within unless forced

Yes. In Britain (and I suppose in mainland Europe too) the jolt came at the end of World War II.

Society in general - and returning service-people in particular - refused to accept the status quo ante.

Supported by our American friends' economic largesse / self-interest, there emerged a social and geo-political revolution.

In that moment, amongst many other societal improvements, the NHS and decolonisation became firmly established.

Note that EU healthcare isn’t perfect either. For example, in the Netherlands, many diabetic care products offered by national healthcare is of the cheapest kind. My wife had these things that shoot a needle for a droplet of blood, and they were awful and crude, usually leaving a much larger hole than needed. She just bought her own to avoid having holes in her fingers. There’s also that thing you can put on your arm and read your blood sugar which is a great invention, but guess what: you have to pay for it yourself.

The “free” healthcare is great, but it’s not free comfortable healthcare.

IIRC the expensive insulin is the comfortable kind, that works better. The cheap insulin Americans can buy is the uncomfortable kind.

I know so many people who are or have been walking around with health conditions they either can't, don't think they can, or are literally afraid to fix because they don't want to ruin their family's financial prospects or go bankrupt.

Most recently, I ran into an old acquaintance with a back problem that sounds like a slipped disc, and this poor dude doesn't have the coverage to get the surgery and treatments needed not to be in constant pain all day.

Hey, maybe he's wrong and its a $300 quick fix, but he's walking around with the free uncomfortable treatment we have in America.

Personally, I think healthcare is worth it. We should just pay for it and reap the incalculable benefits of a more effective society that is much less burdened by disease and chronic injury.

Yes there are initiatives, it's just that most Americans don't want it. We acknowledge problems with our healthcare system and want to fix them, but we just don't want that, which is a big part of the problem also, the only solution some people seem to be willing to accept is socialized medicine.

Yes, but it's been a tough road. Part of the Obama health care reform plan was to allow specific states to opt out of federal requirements if they could provide universal coverage at the state level. It's been started and abandoned in a few states. It's currently working it's way through the legislature in New York which has liberal majorities across the board, but it's still going slowly.

> Aren’t there any initiatives in some US states to make socialized healthcare?

Sort of. The conversations are mostly about expanding our existing socialized healthcare plans that cover over 1/3 of the population already.

Americans over 65 and those with some disabilities are covered by Medicare: https://en.m.wikipedia.org/wiki/Medicare_(United_States) This includes about 60 million people.

People with low income or some other qualifications are covered by Medicaid: https://en.m.wikipedia.org/wiki/Medicaid This includes about 75 million people and reportedly pays for about half of all births.

The affordable care act also subsidized health insurance plans for those with incomes up to 400% of the poverty level: https://www.healthinsurance.org/obamacare/the-acas-cost-shar... These subsidies go to another 9 million people or so.

There are gaps and I agree 100% that we need to continue closing such gaps, but the US actually does have a significant amount of socialized healthcare. Some of the proposals include simply expanding some of these programs to cover the remaining 8-9% of the population without healthcare.

The idea that the US doesn’t have any socialized healthcare is a bit of a myth. The reality is that we do have socialized health care, it just doesn’t cover everyone.

The headlines about insulin costing thousands of dollars per month are also misleading. Insulin is $25/vial at Walmart and you don’t even need a prescription from a doctor to get it. The expensive products are more recent, patented insulin analogs that are longer lasting but obviously shouldn’t be prescribed to someone without insurance who can’t afford them. The $25/vial insulin is equivalent to the generics you read about in headlines like this one.

It’s important to make a distinction between “socialized” care, “free” care, and “universal” care. A healthcare plan that is described by one of those terms is not necessarily described by all of them (even outside of the US)

The US has a large number of socialized healthcare programs, several free healthcare programs, but nothing that is 100% universal. Americans don’t have any reservations about paying for healthcare for the poor, elderly, veterans, etc. People in the US generally hate the idea of anyone qualifying who makes more money than they do, which is one of the reasons why universal plans don’t go over well. The other reason is that a truly universal plan would probably uproot the existing health insurance system, which scares some people who are satisfied with the status quo.

Our existing systems are mainly a result of compromise:

> “let’s have a healthcare plan that covers everyone”

> “you want to tax the working class American to pay for healthcare for the rich? And bankrupt they insurance companies that insure our middle class? And kill jobs?”

> “ok, let’s compromise. Let’s make a plan that covers [insert group of people that voters will feel sorry for]”

And repeat about every decade or so.

That’s how America’s fragmented healthcare system was born.

> > “you want to tax the working class American to pay for healthcare for the rich?

This is where America should have answered "Yup, you betcha!" Because, you'd be taxing the rich even more, but since they'd also benefit from it, they'd have much less grounds to protest against it.

In places like Sweden, billionaires receive the same universal child benefit as everyone else, largely for this exact reason.

This is cool and all, but it looks like pure PR. I cannot find anything that actually links to "Here is our instruction set for how to make insulin yourself!" or something.

Also, for some people with diabetes or at risk of developing it, diet and lifestyle can make a difference.

Type 1 diabetes is not related with obesity.

It really is a shame that there isn’t better names for type 1 and type 2 diabetes. They have such different stories, and yet get lumped together constantly.

There are other forms of diabetes. I know of CFRD and have heard it is neither type 1 nor type 2 and I think there is at least one other form beyond that, but can't recall anything about it.

Edit:

Diabetes is actually five separate diseases, research suggests

https://news.ycombinator.com/item?id=16499376

You can add a sixth class. I have been told that Cystic Fibrosis Related Diabetes (CFRD) is neither Type 1 nor Type 2.

https://news.ycombinator.com/item?id=16499548

Disclosure: I work in diabetes research.

That "five types" article is very poor. They simply applied k-means clustering to a large set of people with diabetes. The problem with k-means clustering is that it can generally find anything you want it to. For instance, you tell k-means clustering how many clusters you want it to find, not the other way around. In this example, there is significant overlap/fuzziness between the classes. It's better to say that there is a wide spectrum of the progression of diabetes.

It is well-known that type 1 diabetes that arises late in life tends to progress very much more slowly than type 1 diabetes that arises in teenagerhood. A teenager with type 1 diabetes can have a very rapid progression, and have very severe symptoms. A person who develops type 1 in their seventies can have such a slow onset that the treating doctor can get very confused about what is going, and assume that it is type 2 instead, until the patient finally cannot live without insulin. K-means clustering has separated these two situations, but they are a spectrum from aggressive to gentle.

But the distinction between type 1 and type 2 is still very relevant. With type 1, the problem is too little insulin (progressing to zero insulin produced because the immune system destroys the insulin-producing pancreatic beta cells), and the treatment is insulin. There is no other treatment.

With type 2, the fundamental problem is too much insulin, which the body naturally produces to correct other fundamental problems, namely high blood sugar levels, which has a tight interaction with diet and obesity. The insulin encourages fat/muscle cells to suck sugar out of the blood to reduce it, but this causes other problems. A high level of insulin is then needed to keep the energy stored in the fat cells and stop it coming back into the blood as sugar, and the insulin-producing cells can eventually burn out from over-use. The treatment is to deal with the high blood sugar levels and obesity - the insulin problem is a second-order effect. Injecting more insulin into a patient with type 2 diabetes can make the problem worse - it might sort out the high blood sugar level, but it does that by cramming all that sugar into fat cells, so insulin injections are generally only used when the insulin-producing cells start failing. Diet, exercise, and blood sugar lowering drugs are better treatments. Different people respond differently to this disease, with some people storing fat around their legs (which is a more healthy option) and others storing it around their internal organs (which is really bad). K-means clustering will have separated this continuous spectrum of people into separate clusters too.

There are multiple other rarer types of diabetes that tend to be overlooked, and probably don't have much participation in the k-means clustering because of their rarity. These include the CFRD you mention, but also gestational diabetes, diabetes associated with various other more syndromic conditions (like Down syndrome), and monogenic diabetes (a single-gene defect causes an inability to correctly produce insulin - we know of double-figures types of this, some of which can be very easily and cheaply treated, and others need to be treated like type 1). There's also diabetes that is caused by surgery, if a patient has their pancreas removed.

Thank you, thank you, thank you.

Gestational diabetes is probably the other one I was trying to remember.

You can be thin and have diabetes 2 too. There is strong correlation (as in weight is massive risk factor), but in fact thin people can get it too.

As with everything, different people are different. Thin people can get type 2 diabetes, but this is often due to inappropriate fat deposits around internal organs. In a proportion of these "skinny-fat" people, a bit more exercise and a better diet may have prevented the type 2 diabetes. A lot of it is genetic, and each different person will have a different adiposity above which they will start to develop type 2 characteristics. People with an Indian heritage need to be extra-careful on this one.

> "Here is our instruction set for how to make insulin yourself!" or something.

I don't think they are there. It is just a project to get there.

If I understand correctly the problem is that if you go to one of their labs they'll cook you a batch in no time (we know the genes, you can order a plasmid that has all the bells and whistles needed to get it made in yeast), but it'd be illegal for many reasons. (They can't sell it without FDA approval for one, they'd need an approved factory for that, and they are infringing on patents.)

They obviously can't advertise this, but in videos they almost literally spell this out. So they do this strange outreach instead, with no clear steps in sight. Plus as others mentioned it's easy to buy insulin. ($25 at Walmart.)

About how easy it is to make recombinant insulin I recommend this channel: https://www.youtube.com/watch?v=J3FcbFqSoQY

I scanned through the site and their first post was in 2015 and has news articles posted about the company with titles like: "The Community Labs Built on Silicon Valley’s Junk: Trash from biotech startups are citizen scientists’ treasure" and "The Rogue Experimenters". Also, lots of posts about wanting interns. This doesn't give me a good feeling.

It's also apparently kind of a dupe* and the top comment in the previous discussion indicates they looked and there's seemingly nothing "open" about this initiative.

I mentioned diet and lifestyle because that's how I manage my otherwise insanely expensive and debilitating condition and did so that way even while homeless. If you are genuinely concerned about the health and finances of poor people, finding a way to educate people about diet and lifestyle strikes me as at least part and parcel if what you ought to be doing and as a generally superior approach. One reason medicine is highly regulated is because screwing it up with unsanitary practices can maim or kill people.

* https://news.ycombinator.com/item?id=27854041

Maybe, instead of constantly drumming on about "diet and lifestyle", we should be studying why the "diet and lifestyle" message has completely failed to move the needle on the obesity crisis.

Cuz I'm pretty sure nobody with diabetes has not heard about "diet and lifestyle". So comments like that are not adding anything to the conversation.

Not specifically about diabetes: to some extent, obesity is a social disease

https://www.nih.gov/news-events/nih-research-matters/friends...

There is also research that connects living in a cluttered/disorganized/messy home to being more at risk of being obese.

https://www.prevention.com/weight-loss/a20513150/how-to-get-...

It's the wrong "diet and lifestyle" recommendation - the standard suggestions of eating less and exercising more don't work.

What does work specifically is a low carb diet and intermittent fasting lifestyle, together with close medical supervision. https://www.virtahealth.com/ has had great success with the approach.

There is also a lot of research indicating that inflammation is an underlying cause of most forms of diabetes. Controlling inflammation, in part by changing my diet, is likely a significant factor in getting my blood sugar issues under control as a side effect of more general efforts to remedy my health problems.

Seriously: Isn't there a business case? Patents for the older Insulins have expired, the manufacture isn't that complicated for any halfway decent pharma or chemical company. The current margins must be through the roof.

How is Insulin in any way different from other generics which are a common business case?

Why is there nobody offering competition?

Apparently it's an US problem. Never heard of insulin as a costly drug in Europe. US health care system is totally broken with costs 10x for most procedures without any reason.

I believe it gets payed for by insurance in basically any other country.

I can only talk about germany: For type 1 diabetes insurance completely covers it. For type 2 it may get fully covered but it depends on some factors, but even then you don't pay the full price, only a part since the insurance will almost always at least partially cover it.

(this is based on a quick google search)

In Italy no need for insurance, it's just the government that gives it you for free. But the problem is, I believe, different: it's the raw cost of the medication. Here in Europe even if the patient has to buy it, the cost is fraction.

Do you have any source I could read to see how it works in Italy? I live in central Europe (Slovakia) and insulin is also "free" here (if you are diabetic and have a prescription), but it´s not "paid by the government", it´s paid by the compulsory insurance everyone is paying (for me, it´s about 5% off of my net salary).

I 100% agree to your second point. I found some data to compare: Humalog from Eli Lilly Netherlands costs 19,42 € per 10 ml vial in Slovakia [1] and $296.29 in the US [2]. Yep, that´s ~13 times as much (I ignore exchange rates, but it´s in the same ballpark). This is not saying much though, due to salary difference. Average monthly salary in Slovakia is 1133 € , while in the US it is $4692.5.

Thus, an average Slovak can pay for 580 ml of insulin monthly (I´ll note here, they doesn´t have to pay, it´s covered by insurance), while an American can only get 158 ml of the same brand, same product insulin.

On top of that is the manufacture price is up to $6.16 per vial. [5]

[1] https://translate.google.com/translate?sl=auto&tl=en&u=https... [2] https://www.drugs.com/price-guide/humalog# [3]https://translate.google.com/translate?hl=&sl=sk&tl=en&u=htt... [4]https://www.bls.gov/oes/current/oes_nat.htm#00-0000 [5]https://www.singlecare.com/blog/insulin-prices/

The "cash" price in the US is $142:

https://www.goodrx.com/humalog?dosage=10ml-of-100-units-ml&f...

(GoodRx doesn't have any direct user fees, they make money by understanding the stupid prescription drug system in the US)

There's a generic that is $50 at several pharmacies.

Thanks for pointing that out. GoodRx is not available from EU (Either due to GDPR or due to not being applicable to non-US readers, I guess). That invalidates my numbers a bit.

However, it´s also pointing to another facet of this issue: the opaqueness of the pricing. In here, price of medication (including insulin) is regulated and it´s the same everywhere, for everyone and no seller-specific discount can be applied.

Yeah, they make money by working the convoluted US system.

It isn't good that the prices vary, but it's been long enough that people with substantial drug costs should be doing some basic checks, discussing the highest quoted US prices doesn't reflect what people are paying.

The "cash" price is $342. The $142 is from a $200 which has eligibility requirements, which don't allow you to get that discount in many cases.

What requirements are attached to using the PBM replacements? My understanding is that you go to a pharmacy that accepts them and give them a number to put into the computer.

Or does using them disqualify people from other programs?

I may have slightly overstated the case above (and have now edited my language to be softer) because frankly, a lot of stuff said in this thread is extremely upsetting to me. (Not you, you are one of the more reasonable people here.) I don't actually know what the numbers are, strictly speaking. In my experience, a lot of things around this sound reasonable until you actually have to come into contact with the bureaucracy surrounding them, and they end up being much more onerous in practice.

But yes, if you click on the green button, you'll see a list of restrictions. One of those is that if you're participating in any other state or federally funded programs, yes.

The "I have been prescribed this drug" bit is also pernicious; you don't get a prescription for "insulin," you get one for Humalog or Novolog or Levemir. You are at the whim of your doctor. Used one kind for years, but suddenly lose your job, which means a change in health insurance and a change of doctor, who decides that you need to change your brand for whatever reason? You can't use this discount to help keep continuity. (Additionally I am not sure what the "or am a caregiver" requirement is legally, but should really look that one up so that I know exactly what those requirements are, so thank you for giving me something to do today...)

In addition you are comparing somebody who has insurance (slovenia) to somebody who theoretically doesn't 'US'. Most people in the US get their health insurance through their employer and would pay nothing out of pocket, and if you are uninsuranced the drug companies will often times just give the drug away to you for free.

Even if you have really good health insurance, you often pay out of pocket.

> if you are uninsuranced the drug companies will often times just give the drug away to you for free.

This is horribly incorrect. People die for lack of insulin in the US all the time, and it's not because they just didn't bother to ask for their free insulin.

No, I´m not. The price for an insured patient (which is everyone, by law) is zero. 19.96 is just the sticker price.

But they have 'insurance' through their taxes.

If taking exchange rate into account it's 13.05 times as expensive.

LIST PRICE DOESN'T MATTER IN THE US

Try to buy prescriptions from a pharmacy without insurance and you'll see how much list prices matter in the US. If you don't have the money for the retail price, you're shit out of luck and won't be able to buy them.

> but it´s not "paid by the government", it´s paid by the compulsory insurance everyone is paying

Is there really all that much of a difference; isn't that insurance pretty much just another name for the state?

The US healthcare system is a mess in the US because the government pays for a lot incentivizing companies to raise prices.

Total costs usually work out be 2x, it's just that the government pays a big chunk. (I'm sure it's not uniformly 2x, so insulin might cost more.)

Cheaper insulin would be nice, but we ought to put more focus on preventing and reversing type 2 diabetes. Virta health has had good results in using diet to put diabetes into remission, allowing patients to reduce or eliminate their need for insulin.

https://www.virtahealth.com/blog/with-sustained-type-2-diabe...

How much of the insulin is used for type 1 vs type 2?

Linux/GNU, Wikipedia, WorldWideWeb: these are existence proof, at meaningful scale/impact, for something...

There's a qualitative difference between "open" efforts, and "conventional" organisation.. qualitative. Wikipedia, for example, co-exists concurrently with twitter, FB, news feeds and advertising-optimised ranking algorithms. Consider Wikipedia during the "truth crisis" era or whatever it is that social media's blooming has created. It is affected, but there is way more dignity and resilience in wikipedia's handling than Alphabet, FB, etc.

Something similar is true of the web itself, email, etc. Whatsapp, even IG, snapchat or whatnot are more or less in the same realm as email. Email isn't without surveillance, lock in, spam or antipattern issues... but the protocol itself isn't a primary belligerent, as it is with proprietary messaging platforms like FB's.

In any case, it's worth trying to export these examples to other realms.

I just gave a patient with a malignant tumour an injection of this: https://www.drugs.com/price-guide/somatuline-depot

It cost her less than 5 USD.

Quantity Per unit Price 0.2 milliliters $30,459.20 $6,091.84

Our (Not the USA ) system seems to work well for some aspects of health care.

Not to downplay the importance of low cost retail medicine, but what if she didn't have 5 dollars?

The usual: getting thrown in the debt tower.

In that case, the chemist would probably give it to her for free.

Alternatively, I would have paid for it myself ( I would have rung the chemist and asked him to put it on my account ).

People should not go without essential care simply because of an inability to pay.

Can you elaborate? Per your link, there is no generic version of this drug.

How did it only cost her $5 if it costs $6000 per unit and there are no alternatives?

Was that her cost after another entity (insurance, government) paid the rest of the cost?

Here in Australia, the national health system pays the cost above a certain threshold.

Since her financial circumstances are strained, the amount she contributes to each prescription is capped at AUD 6.60 ie: USD 4.88

Although we are pretty backward compared to the cutting edge in the USA ( A couple of my classmates work at the Mayo and I know how far behind Australia is. One of them edited the Mayo Clinic manual of cardiac electrophysiology ), health care is adequate for most common health problems and is generally pretty affordable.

So I keep hearing that there is cheap, patent unencumbered insulin in the US but nobody wants it because it's not as good as the more recently invented patented variants that are sold for a premium.

Is this open source stuff just the same old patent unencumbered insulin that people apparently just don't want?

Did they mention in what way it's not as good?

It is significantly harder to use, and this is a situation where if you make a bad enough mistake, you die. Transitioning from one kind to another means you have to figure out how they're different, introducing situations where you can more easily make a mistake. It also means you have to test more, which means using more strips, which means more cost. Ideally you would be doing this with the help of your doctor, which means more visits, which means more cost.

Previous discussion: https://news.ycombinator.com/item?id=27661637

Ah - was wondering why this seemed familiar.

Here's the video from it - https://www.youtube.com/watch?v=63uqBBrHKTc&ab_channel=Freet...

It is neat that this is something people are trying, but this strikes me as a technical solution to a political problem. Such a thing probably can't scale on account of that.

The real solution is to reform how drugs are priced and healthcare is provided. In the UK we did this over 70 years ago and the most you should pay for a medication is £12/month (committed to a year), £11 per prescription, or nothing (if you're poor).

This is possible because of the politics and governance of healthcare in the UK: the tech has been around for half a century.

Politics and governance in the UK: freeloading on the American pharma system.

Actually, it is more like: not allowing regular people to be shafted by the American pharma system.

I'm not sure what this is hoping to accomplish. Coming up with a lab method to make insulin is about 5% of the way to providing actual insulin for patients.

You'd still need to: 1) develop a scaleable process [pilot plant], 2) have a robust enough analytical process to make sure you're not killing anyone, 3) have a reproducible process so that each dose is the same.

The drug companies selling generics manage to do all that for a low price.

Because they millions and millions of vials. The cost of a factory isn’t that much when spread out across that much volume.

If the choice is between people dying due to lack of insulin or not people will take an untested insulin.

This isn’t going to produce any insulin. You need equipment and a sterile fill line.

I'd be willing to bet that any open source alternative approach to insulin manufacturing that gets any traction would have drug companies quickly lobbying governments to license insulin production, or they'd launch ads campaigns about the dangers of "socialist insulin", or something. They'll do their best to kill off the competition no matter what.

Insulin is cheap to manufacture. Around the world in countries that have regulated drug pricing it's also cheap to buy. The best (as in proven-to-work) way to reduce the price in places where it's expensive is to stop drug companies charging whatever they want.

One thing I don't understand is, what is preventing anyone from just starting a new factory or importing insulin from abroad to sell it cheaper than the competitors?

Rules and regulations? It's not a food supplement, insuline is injected, I imagine governments having opinions?

It has been tried before. What happened is that the established players will start giving it away for free until you are out of business.

Because it's illegal. America has protectionist policies for their big pharma.

Regulatory capture.

One of the huge problems with making generic drugs is that you need to demonstrate that your drug does the same thing as the real deal, which isn't as expensive as phase I, II, and III trials for bringing a completely new product to market, but it isn't cheap, fast, or easy. Likewise, setting up proper facilities to manufacture your product isn't cheap, either.

https://www.fda.gov/drugs/news-events-human-drugs/generic-dr...

Walmart sells an older Novo Nordisk insulin rather cheaply. The question is: Is it cheap enough?

It's still $75 per vial and depending on how poor you are that might still be to expensive.

The cheap insulin is also harder to regulate for the user. If you're poor, you might also have other issues which prevents you from correctly medicating yourself. I don't really see that an Open Source insulin would help anyone who can't already afford the cheapest commercial version.

This article from TIME (linked at the bottom of their website) has a good description of the problems in the insulin market and the goals of the project/foundation: https://time.com/5709241/open-insulin-project/

Many countries in Africa are import several critical medications from countries such as India where they are produced at much lower costs. Why is USA unable to do the same in quantities so that their poorer population is able to but them at a lower price.

The enormous lobbying power of multinational pharmaceutical companies results in laws against it.

i.e. They pay millions in bribes to lawmakers to ensure competition is illegal.

Because the US has a rule of law and patent system that encourages R&D. Africa freeloads on the US innovation.

Related thread on bio hacking and insulin from a few weeks ago: https://news.ycombinator.com/item?id=27661637

A fun song by Acapella Science featuring the discovery of insulin [0]

[0]: https://www.youtube.com/watch?v=He7X5jGt8lY

I like the effort, but we could solve the problem better by attacking it from the other end. Stop ordering people to eat a high carb diet, and demand for insulin will dissolve.

People are actually reversing the effect of Type 2 diabetes with high-carb plant-based diets. Low-carb diets have been found to increase the risk of getting Type 2 diabetes.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466941/

Absolutely wrong

great argument

Apparently, since you chose to reply to this one in stead of the sibling one.

Carbs are sugar strung together. They are quickly chopped up and metabolized, raising your blood sugar level. To maintain homeostasis the liver responds with a squirt of Insulin. Insulin signals to your fat cells to start storing the excess sugar, which would otherwise poison you by hyperglycemia.

In a normal high fat/ low carb diet, you feel full after eating, and your blood sugar returns to normal. At this point your fat cells can release those sugars back to the blood stream (to prevent hypOglycemia). But with a low fat diet your body doesn't get enough vitamins and minerals (most of which are fat soluble and removed, or made indigestiable without fat) so you stay hungry. You are forced to eat more of this high sugar food, which keeps your blood sugar high and prevents your fat cells from completing the second part of the fat/glucose cycle. So your fat cells swell and divide, making you bigger, and the bigger you are, the more nutrients your body demands. The obesity epidemic began in 1980 when the USDA began dictating a high carb diet.

Bio-hackers doesn’t resonate well with me.

Drug production is pretty difficult. Pharma companies are high tech clean room manufacturers who operate at very high quality standards and large scale, with a significant amount of embedded knowledge and experience acquired over many years. The incredibly rapid roll out of Covid vaccines for example is testament to that.

Taking this into account, trying to develop sustainable and useful insulin production from scratch is 100% destined for failure, but good luck to them.

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