20 ms·

Open Insulin Foundation

567 points by hmmx3 5y ago

DoreenMichele 5y ago
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.
- elnatro 5y ago
  Type 1 diabetes is not related with obesity.
  - deleted 5y ago
    [deleted]
  - kennywinker 5y ago
    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.
    - DoreenMichele 5y ago
      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 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 https://news.ycombinator.com/item?id=16499548
      - mnw21cam 5y ago
        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.
    - watwut 5y ago
      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.
      - mnw21cam 5y ago
        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.
- MattGaiser 5y ago
  > "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.
  - pas 5y ago
    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 https://www.youtube.com/watch?v=J3FcbFqSoQY
- grp000 5y ago
  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.
  - DoreenMichele 5y ago
    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 https://news.ycombinator.com/item?id=27854041
- moron4hire 5y ago
  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.
  - lovemenot 5y ago
    Not specifically about diabetes: to some extent, obesity is a social disease https://www.nih.gov/news-events/nih-research-matters/friends-family-may-play-role-obesity https://www.nih.gov/news-events/nih-research-matters/friends...
    - DoreenMichele 5y ago
      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-organized-lose-weight-faster/ https://www.prevention.com/weight-loss/a20513150/how-to-get-...
  - Dove 5y ago
    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/ https://www.virtahealth.com/ has had great success with the approach.
    - DoreenMichele 5y ago
      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.
ganafagol 5y ago
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.
- Popegaf 5y ago
  There's a status report on the blog https://openinsulin.org/our-blog/spring-2021-progress-report-for-open-insulin/ 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.
  - theonlybutlet 5y ago
    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.
    - consp 5y ago
      > 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.
      - RHSeeger 5y ago
        > cheaper generics Interestingly, they're really not much cheaper, either. On the order of 10% cheaper, I believe.
elnatro 5y ago
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?
- hythyt 5y ago
  why is comment this downvoted?
  - Kosirich 5y ago
    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.
    - antman 5y ago
      Pointing out that it addresses a artificially created political problem is unpleasant but hardly be classified as a “bad faith statement”.
      - deleted 5y ago
        [deleted]
    - deleted 5y ago
      [deleted]
    - elnatro 5y ago
      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).
onion2k 5y ago
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.
- tnecio 5y ago
  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?
  - sverhagen 5y ago
    Rules and regulations? It's not a food supplement, insuline is injected, I imagine governments having opinions?
  - Shaddox 5y ago
    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.
  - pineaux 5y ago
    Because it's illegal. America has protectionist policies for their big pharma.
  - shadilay 5y ago
    Regulatory capture.
  - GravitasFailure 5y ago
    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-drug-approval-process https://www.fda.gov/drugs/news-events-human-drugs/generic-dr...
shusaku 5y ago
Previous discussion: https://news.ycombinator.com/item?id=27661637 https://news.ycombinator.com/item?id=27661637
- goldcd 5y ago
  Ah - was wondering why this seemed familiar. Here's the video from it - https://www.youtube.com/watch?v=63uqBBrHKTc&ab_channel=Freethink https://www.youtube.com/watch?v=63uqBBrHKTc&ab_channel=Freet...
refurb 5y ago
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.
- tonyedgecombe 5y ago
  The drug companies selling generics manage to do all that for a low price.
  - refurb 5y ago
    Because they millions and millions of vials. The cost of a factory isn’t that much when spread out across that much volume.
- freemint 5y ago
  If the choice is between people dying due to lack of insulin or not people will take an untested insulin.
  - refurb 5y ago
    This isn’t going to produce any insulin. You need equipment and a sterile fill line.
Ice_cream_suit 5y ago
I just gave a patient with a malignant tumour an injection of this: https://www.drugs.com/price-guide/somatuline-depot 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.
- dmos62 5y ago
  Not to downplay the importance of low cost retail medicine, but what if she didn't have 5 dollars?
  - andi999 5y ago
    The usual: getting thrown in the debt tower.
  - Ice_cream_suit 5y ago
    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.
- hermannj314 5y ago
  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?
  - Ice_cream_suit 5y ago
    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.
endymi0n 5y ago
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?
- antirez 5y ago
  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.
  - ghosty141 5y ago
    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)
    - antirez 5y ago
      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.
      - mngnt 5y ago
        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://www.adc.sk/databazy/produkty/detail/humalog-100-u-ml-228842.html https://translate.google.com/translate?sl=auto&tl=en&u=https... [2] https://www.drugs.com/price-guide/humalog# https://www.drugs.com/price-guide/humalog# [3]https://translate.google.com/translate?hl=&sl=sk&tl=en&u=https%3A%2F%2Fwww.minimalnamzda.sk%2Fpriemerna-mzda.php https://translate.google.com/translate?hl=&sl=sk&tl=en&u=htt... [4]https://www.bls.gov/oes/current/oes_nat.htm#00-0000 https://www.bls.gov/oes/current/oes_nat.htm#00-0000 [5]https://www.singlecare.com/blog/insulin-prices/ https://www.singlecare.com/blog/insulin-prices/
hi41 5y ago
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.
- grecy 5y ago
  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.
- igorzx31 5y ago
  Because the US has a rule of law and patent system that encourages R&D. Africa freeloads on the US innovation.
hkt 5y ago
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.
- igorzx31 5y ago
  Politics and governance in the UK: freeloading on the American pharma system.
  - hkt 5y ago
    Actually, it is more like: not allowing regular people to be shafted by the American pharma system.
talhof8 5y ago
Bio-hackers doesn’t resonate well with me.
irthomasthomas 5y ago
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.
- KitDuncan 5y ago
  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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466941/
  - sasoon 5y ago
    Absolutely wrong
    - KitDuncan 5y ago
      great argument
      - CRConrad 5y ago
        Apparently, since you chose to reply to this one in stead of the sibling one.
  - irthomasthomas 5y ago
    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.
agotterer 5y ago
Related thread on bio hacking and insulin from a few weeks ago: https://news.ycombinator.com/item?id=27661637 https://news.ycombinator.com/item?id=27661637
laszlokorte 5y ago
A fun song by Acapella Science featuring the discovery of insulin [0] [0]: https://www.youtube.com/watch?v=He7X5jGt8lY https://www.youtube.com/watch?v=He7X5jGt8lY
Gatsky 5y ago
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.
sgt101 5y ago
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.
- buildint 5y ago
  Could you just store more insulin as a stop gap?
  - Cosmin_C 5y ago
    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.
    - jawngee 5y ago
      We have two years of insulin in our fridge, I'm curious what you mean by you can't store large quantities?
dalbasal 5y ago
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.
Arch-TK 5y ago
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?
- badpenny 5y ago
  Did they mention in what way it's not as good?
  - steveklabnik 5y ago
    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.
nradov 5y ago
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-diabetes-reversal-management-is-becoming-a-thing-of-the-past https://www.virtahealth.com/blog/with-sustained-type-2-diabe...
- eiriklv 5y ago
  How much of the insulin is used for type 1 vs type 2?
jhon_smith12 5y ago
Thanks for sharing https://www.couponsexperts.com/ https://www.couponsexperts.com/
alexkreidler 5y ago
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/ https://time.com/5709241/open-insulin-project/

567 points by hmmx3 5y ago

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.

elnatro 5y ago
Type 1 diabetes is not related with obesity.
- deleted 5y ago
  [deleted]
- kennywinker 5y ago
  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.
  - DoreenMichele 5y ago
    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 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 https://news.ycombinator.com/item?id=16499548
    - mnw21cam 5y ago
      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.
  - watwut 5y ago
    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.
    - mnw21cam 5y ago
      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.
MattGaiser 5y ago
> "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.
- pas 5y ago
  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 https://www.youtube.com/watch?v=J3FcbFqSoQY
grp000 5y ago
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.
- DoreenMichele 5y ago
  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 https://news.ycombinator.com/item?id=27854041
moron4hire 5y ago
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.
- lovemenot 5y ago
  Not specifically about diabetes: to some extent, obesity is a social disease https://www.nih.gov/news-events/nih-research-matters/friends-family-may-play-role-obesity https://www.nih.gov/news-events/nih-research-matters/friends...
  - DoreenMichele 5y ago
    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-organized-lose-weight-faster/ https://www.prevention.com/weight-loss/a20513150/how-to-get-...
- Dove 5y ago
  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/ https://www.virtahealth.com/ has had great success with the approach.
  - DoreenMichele 5y ago
    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.

ganafagol 5y ago

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.

Popegaf 5y ago
There's a status report on the blog https://openinsulin.org/our-blog/spring-2021-progress-report-for-open-insulin/ 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.
- theonlybutlet 5y ago
  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.
  - consp 5y ago
    > 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.
    - RHSeeger 5y ago
      > cheaper generics Interestingly, they're really not much cheaper, either. On the order of 10% cheaper, I believe.

elnatro 5y ago

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?

hythyt 5y ago
why is comment this downvoted?
- Kosirich 5y ago
  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.
  - antman 5y ago
    Pointing out that it addresses a artificially created political problem is unpleasant but hardly be classified as a “bad faith statement”.
    - deleted 5y ago
      [deleted]
  - deleted 5y ago
    [deleted]
  - elnatro 5y ago
    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).

onion2k 5y ago

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.

tnecio 5y ago
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?
- sverhagen 5y ago
  Rules and regulations? It's not a food supplement, insuline is injected, I imagine governments having opinions?
- Shaddox 5y ago
  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.
- pineaux 5y ago
  Because it's illegal. America has protectionist policies for their big pharma.
- shadilay 5y ago
  Regulatory capture.
- GravitasFailure 5y ago
  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-drug-approval-process https://www.fda.gov/drugs/news-events-human-drugs/generic-dr...

shusaku 5y ago

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

goldcd 5y ago
Ah - was wondering why this seemed familiar. Here's the video from it - https://www.youtube.com/watch?v=63uqBBrHKTc&ab_channel=Freethink https://www.youtube.com/watch?v=63uqBBrHKTc&ab_channel=Freet...

refurb 5y ago

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.

tonyedgecombe 5y ago
The drug companies selling generics manage to do all that for a low price.
- refurb 5y ago
  Because they millions and millions of vials. The cost of a factory isn’t that much when spread out across that much volume.
freemint 5y ago
If the choice is between people dying due to lack of insulin or not people will take an untested insulin.
- refurb 5y ago
  This isn’t going to produce any insulin. You need equipment and a sterile fill line.

Ice_cream_suit 5y ago

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

dmos62 5y ago
Not to downplay the importance of low cost retail medicine, but what if she didn't have 5 dollars?
- andi999 5y ago
  The usual: getting thrown in the debt tower.
- Ice_cream_suit 5y ago
  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.
hermannj314 5y ago
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?
- Ice_cream_suit 5y ago
  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.

endymi0n 5y ago

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?

antirez 5y ago
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.
- ghosty141 5y ago
  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)
  - antirez 5y ago
    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.
    - mngnt 5y ago
      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://www.adc.sk/databazy/produkty/detail/humalog-100-u-ml-228842.html https://translate.google.com/translate?sl=auto&tl=en&u=https... [2] https://www.drugs.com/price-guide/humalog# https://www.drugs.com/price-guide/humalog# [3]https://translate.google.com/translate?hl=&sl=sk&tl=en&u=https%3A%2F%2Fwww.minimalnamzda.sk%2Fpriemerna-mzda.php https://translate.google.com/translate?hl=&sl=sk&tl=en&u=htt... [4]https://www.bls.gov/oes/current/oes_nat.htm#00-0000 https://www.bls.gov/oes/current/oes_nat.htm#00-0000 [5]https://www.singlecare.com/blog/insulin-prices/ https://www.singlecare.com/blog/insulin-prices/

hi41 5y ago

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.

grecy 5y ago
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.
igorzx31 5y ago
Because the US has a rule of law and patent system that encourages R&D. Africa freeloads on the US innovation.

hkt 5y ago

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.

igorzx31 5y ago
Politics and governance in the UK: freeloading on the American pharma system.
- hkt 5y ago
  Actually, it is more like: not allowing regular people to be shafted by the American pharma system.

talhof8 5y ago

Bio-hackers doesn’t resonate well with me.

irthomasthomas 5y ago

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.

KitDuncan 5y ago
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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466941/
- sasoon 5y ago
  Absolutely wrong
  - KitDuncan 5y ago
    great argument
    - CRConrad 5y ago
      Apparently, since you chose to reply to this one in stead of the sibling one.
- irthomasthomas 5y ago
  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.

agotterer 5y ago

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

laszlokorte 5y ago

A fun song by Acapella Science featuring the discovery of insulin [0] [0]: https://www.youtube.com/watch?v=He7X5jGt8lY https://www.youtube.com/watch?v=He7X5jGt8lY

Gatsky 5y ago

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.

sgt101 5y ago

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.

buildint 5y ago
Could you just store more insulin as a stop gap?
- Cosmin_C 5y ago
  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.
  - jawngee 5y ago
    We have two years of insulin in our fridge, I'm curious what you mean by you can't store large quantities?

dalbasal 5y ago

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.

Arch-TK 5y ago

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?

badpenny 5y ago
Did they mention in what way it's not as good?
- steveklabnik 5y ago
  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.

nradov 5y ago

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-diabetes-reversal-management-is-becoming-a-thing-of-the-past https://www.virtahealth.com/blog/with-sustained-type-2-diabe...

eiriklv 5y ago
How much of the insulin is used for type 1 vs type 2?

jhon_smith12 5y ago

Thanks for sharing https://www.couponsexperts.com/ https://www.couponsexperts.com/

alexkreidler 5y ago

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/ https://time.com/5709241/open-insulin-project/