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Biohackers take aim at big pharma’s stranglehold on insulin
- andrewfromx 5y agothis is a great story, about how to get around an obstacle in a creative way.
- ch4s3 5y agoThis is sort of meta, but it's cool to see Free Think popping up here. It's a great publication that I think would really be of interest to this community. More germane to the article, it will be interesting to see what happens over the next 10 years as bio-tech becomes more accessible to hacker types and hobbyists.
- Blahah 5y agoPretty cool, but it's a problem with the law and needs to be fixed in law.
- holstvoogd 5y agoIf you wait for that, all diabetics will be dead probably…
- Pokepokalypse 5y ago"Don't worry; we'll make more." - The US food industry
- cadr 5y agoI'm pretty sure they don't make the Type-1's.
- adamrezich 5y agoit was (going to be) but then the new guy reversed the previous guy's decision
- deleted 5y ago[deleted]
- anonbcpolitics 5y agoPrevious guy tried, but the new "Big guy" nixed the EO before it could go into effect. https://www.federalregister.gov/documents/2020/12/23/2020-28483/implementation-of-executive-order-on-access-to-affordable-life-saving-medications https://www.federalregister.gov/documents/2020/12/23/2020-28... Feel free to link any biased news article or Politifact telling me how it wouldn't have mattered or wasn't that effective. That's a lie, it capped the prices, but at least ask yourself if doing nothing is better, or worse, cancelling an action that did something. Then ask why they did it. Just like many other reversals it wasn't for you, it was for Pharma buddies. They say one thing and do another.
- throwaway4china 5y agoPrevious guy tried, but the new "Big guy" nixed the EO before it could go into effect. https://www.federalregister.gov/documents/2020/12/23/2020-28 https://www.federalregister.gov/documents/2020/12/23/2020-28... Feel free to link any biased news article or Politifact telling me how it wouldn't have mattered or wasn't that effective. That's a lie, it capped the prices, but at least ask yourself if doing nothing is better, or worse, cancelling an action that did something. Then ask why they did it. Just like many other reversals it wasn't for you, it was for Pharma buddies. They say one thing and do another.
- whereshunter 5y agoPrevious guy tried, but the new "Big guy" nixed the EO before it could go into effect. https://www.federalregister.gov/documents/2020/12/23/2020-28 https://www.federalregister.gov/documents/2020/12/23/2020-28... Feel free to link any biased news article or Politifact telling me how it wouldn't have mattered or wasn't that effective. That's a lie, it capped the prices, but at least ask yourself if doing nothing is better, or worse, cancelling an action that did something. Then ask why they did it. Just like many other reversals it wasn't for you, it was for Pharma buddies. They say one thing and do another.
- kevin_thibedeau 5y agoYou don't need new laws to deal with corrupt business practices. The fact that cheap off-patent insulin isn't available in the US is clear proof that the pharmaceuticals are all colluding together to maintain high pricing. Otherwise free market forces would take over and someone would sell what the rest of the world gets, siphoning off sales from medical tourists going to Mexico and those who want off of expensive alternatives. Conveniently the FTC looks the other way. The American government in inaction.
- Blahah 5y agoI was not suggesting that we need more regulation necessarily. It's a problem of law in that it's entirely made possible (and incentivised) by laws. Patent law and laws governing the development, marketing, distribution, and crucially import of medicines.
- deeviant 5y agoI really wish this would be a higher priority for the current class of billionaire philanthropists: open source science. Medical research guided by the idea of preventing disease rather than creating expensive life-long treatments, and prioritizing the diseases that cause the most amount of suffering rather than present the best opportunity for profit. And not just medicine, but just about any industry could benefit.
- pope_meat 5y agoWall Street Smart Genius types have long held that curing disease is bad business, managing symptoms over the entire lifetime allows them to extract more capital out of the cattle. So, if you're looking to cure something you're going to struggle to find funding. Don't worry though, the economy will survive.
- lotsofpulp 5y agoI wonder how the Hep C cures, COVID vaccines, shingles vaccine, HPV vaccines, and other cures got funding over the past 2 decades.
- nceqs3 5y agoPeople love to bash big pharma, until they get cancer...
- deeviant 5y agoThen they get a cancer treatment, that was likely partially funded by the government via grant or tax benefit or medicare graft but fully owned by the private company, they are charged tens of thousands if not hundreds of thousands of dollars even though they have insurance, then mostly die anyways, because although cancer treatments are much better, they are still in the stone age. And their family than learns who actually funds cancer research: they do. It's funny because your statement was supposed to support the idea pharma only do good things but instead it exactly shows the failure mode of capitalism in medicine: when you get sick, its very often that you do not have the time or capacity to be a informed consumer and the entire premise of capitalism breaks down.
- sparrish 5y agoThis is bogus. Wal-mart sells insulin for $24.88 a vial without prescription currently. It's only the newer 'guchi' insulin brands that are crazy expensive. Stuff from 1996 that is compared to in this article is actually cheaper than it was in 1996 (adjusted for inflation).
- minitoar 5y agoit’s “Gucci”, like the luxury brand
- lotsofpulp 5y agoFunnily enough, also a "luxury" brand.
- burkaman 5y agoIt's not branding, the newer insulin is significantly different and better for almost every patient. https://diabetesstrong.com/walmart-insulin/ https://diabetesstrong.com/walmart-insulin/ It's likely not what your doctor prescribed, it doesn't last as long, it requires you (or your young children) to eat on a very specific schedule, it can't be used with an insulin pen or insulin pump, it's just all around a worse and less effective treatment.
- jart 5y agoWhen were these newer insulins invented? Are they a recent thing? Was it the case that twenty years ago, "Walmart" insulin was the only insulin?
- jimrandomh 5y ago1996. https://en.wikipedia.org/wiki/Insulin_lispro https://en.wikipedia.org/wiki/Insulin_lispro
- gruez 5y agoSeems like everything is working as intended? A corporation invests money to develop a better product, and the government gives them a 20 year monopoly on it so they charge a premium and recoup their investment. As a patient if you want to pay the premium for it, you can get the better product, otherwise you can still stick with whatever walmart's selling. It's worse, but it's not any worse than what you'd had if the company didn't come along and invented the better product.
- HarryHirsch 5y agoInsulin is a solved problem, in first-world countries the sale price is fixed and there's public healthcare. But in America you are supposed to take "personal responsibility" for your own health and biohack your way ouf of type 1 diabetes?! Srsly? This s a political, not a scientific problem. Call your congresscritter.
- adamrezich 5y ago> Call your congresscritter. unfortunately not likely to do anything as long as the big pharma lobby remains as powerful as it is
- badRNG 5y agoWhat else is one to do?
- HarryHirsch 5y agoTake to the streets, like the French do?
- SiempreViernes 5y agoActually, the French mostly stay at home: the last gubernatorial elections had like 34% participation.
- permo-w 5y agoThey mean strikes, and protests
- OriginalNebula 5y agoIn the second round of the 2017 presidential election there was 65.3% turnout. In the 2020 US presidential election there was 66.8% turnout.
- tux3 5y ago
- f6v 5y agoAs someone who had to create transgenic E.coli in a lab, I admire the effort. It’s hard to get it right, especially when trying to make bacteria produce stuff for you. However, it feels like a huge step backward. Imagine you couldn’t afford to buy a piece of bread. Instead, you need to grow your own grains and build a windmill first. Sounds ridiculous in 2021.
- gentleman11 5y agoMy wife bakes bread almost every day and grows her own yeast. She loves it and the bread is fantastic. What is so ridiculous?
- ChefboyOG 5y agoThere's nothing ridiculous about the fact that your wife enjoys baking bread. There's a lot that's ridiculous about bread being so expensive that recreating the entire supply chain in your backyard is the only economically viable option for obtaining it. The metaphor pretty clearly was not about critiquing baking as a hobby.
- gentleman11 5y agoIt’s clearly about mocking decentralized home made solutions to problems, and of the people who opt for that approach. It’s an insult to every Amish person on earth and to home mechanics who shy away from garages. It’s also, by far, the most downvoted thing I’ve ever posted so thanks for using your other accounts to hit me for my acidic and savagely inappropriate comment
- lotyrin 5y agoI'm not sure why you are projecting that, but it's not there.
- SketchySeaBeast 5y agoTheir point was why are people being FORCED to produce a diabetes bio-hack instead of getting insulin. Neither your wife, Amish people, nor home mechanics are forced to make their own bread instead of buying it - they are all choosing to even though bread is cheap and easily available.
- deleted 5y ago[deleted]
- nknealk 5y agoSome considerations on manufacturing — there’s a variety of product quality steps necessary to release batches of medicine. The FDA mandates this as part of GMP regulations. These steps help ensure things like: * How do I know that every vial has the same concentration of insulin each time? That is to say 1 unit from a vial today and 1 unit from another vial is going to have the same dosing. * How do I know the insulin is purified? If there’s any host cell protein in the vial, that could be immunogenic and cause bad side effects. * How do I know that the formulation of insulin in the vial won’t degrade on me at whatever storage condition is stated? I realize that these tests make up only a small fraction of the price, but there’s a lot of value to purchasing medicine from regulated sources. I’m not against upstart competition against big pharma, but I worry that you might literally kill someone if you don’t include these product quality steps in your process.
- tomaszs 5y agoIt makes sense. On the other hand pharmaceutical companies make mistakes also, just on a bigger scale. Also I imagine that when it will be easier to set up insulin small scale production, than more scientists will be able to do innovate and improve the process.
- shkkmo 5y ago> there’s a lot of value to purchasing medicine from regulated sources. I’m not against upstart competition against big pharma, but I worry that you might literally kill someone if you don’t include these product quality steps in your process. Where are you getting this from? This goal of this isn't to have every diabetic brewing insulin in their garage so they evade the IP police in a distrubuted fasion. The goal is to create open IP needed for creation, purification and quality control that will allow labs around the world to create insulin in keeping with local regulations.
- YHK 5y agoThank you. This is exactly what we are trying to do. It is difficult for us to get rid of the mad scientist label. We have a team in fact that evaluate the FDA requirement and looking at what would be the best way to do it. Also, Open IP means for us that we will share the modified strains which are optimized for the expression of the insulin, and ideally, we will be able to provide scientific knowledge and resources to help the creation of local manufacturing plant.
- clarkrinker 5y agoEvery time this stuff comes up it feels like we focus on the politics and not the people with diabetes. If you or your kid or your friends have Type 1 and are struggling to make your insulin out of pockets please, please, please call the Eli Lily hotline and get the copay card. They've dropped the monthly cost for Humalog to $35. Don't ration. Work the system. https://www.humalog.com/savings-support https://www.humalog.com/savings-support
- nceqs3 5y agoEvery drug company gives away their drugs for free to people who can't afford it in the US. It's sad that not enough people take advantage of patient assistance programs.
- DaiPlusPlus 5y ago> Every drug company gives away their drugs for free to people who can't afford it in the US I don't believe this is universally true though. For example, patent-encumbered novel delivery mechanisms for existing (generic) drugs, like Concerta. The drug company has nothing to gain by maintaining the administrative infrastructure for patient-assistance for drugs like that. Another example are personalised therpaies, such as immunotherapy treatments - which cost so much because (as I understand it, please correct me if I'm wrong) they require individual experts to develop the personalized antibodies and whatnot - unlike with mass-produced medication pills/tablets/capsules that have negligible marginal cost: a company isn't going to give away a $100k therapeutic drug for free because it still is going to cost them $50k+ (numbers just made up btw).
- deleted 5y ago[deleted]
- epmaybe 5y agoThis is apologist thinking at best, intentionally misleading at worst. You are correct that companies do have patient assistance programs. What you’re leaving out is that this applies to a small subset of people that usually have to be denied federal/state insurance, not have any other kind of insurance, and make less than 4x federal poverty level. additionally, they rarely provide a lifelong supply. Imagine being a diabetic and novo nordisk, who makes most of the insulin types on the market, only gives you a four month supply. Oh wait, thats exactly the terms of their patient assistance program.
- E8L3i 5y agoMath is pretty simple if you have 3-4 producers off essential product protected from external competition by patents. In this case better to avoid competition and increase price 10x than compete in hope to increase market share maybe 2x-3x.
- Seattle3503 5y ago> These companies essentially have a monopoly on the market; there is simply no competition to drive the price down. The word for this is oligopoly.
- nom 5y agoCan someone explain in layman's terms why there is no competition on this market? As insulin is so cheap to produce, why can't I just get my own product approved and sell it?
- Thebroser 5y agoThere are crazy patents throughout the entirety of the insulin production pipeline. Some of these being extremely absurd such as patenting the pH of a buffer for specific protocols! I volunteer for the Open Insulin Foundation on/off when not too focused on my research project and it's basically how can we come up with a roadmap to making this decentralized insulin without violating any existing patents. An added layer of difficulty is like other have mentioned, engineering Ecoli to produce the homolog as well as developing from scratch the devices for extraction and purification (think hplc). Again, these need to be made from scratch as to not violate any patents. At least in the U.S., this is why there is no competition in the market. There is also a significant price barrier as you need to bring up your production to GMP standards which means you need a state of the art clean room and multiple roles to supervise the production of the product every step of the way.
- cadr 5y agoI wonder if a better effort would be to challenge the patents rather than try to go around them. (Not that I don't think what you are doing is awesome, because I do.)
- Thebroser 5y agoYes! The Open Insulin foundation not only has volunteers with a biomedical background, we have volunteers from many other backgrounds including lawyers that help us try and challenge existing patents. Again, others have said that manpower might be better invested in openly challenging the monopoly that U.S. companies have on some of these patents in court or by appealing to our congressmen. However, I believe that there’s no reason not to do both in parallel. My scientific training can only take me so far and i’ll happily help a project like this if it can open up a new source of affordable insulin in this country, but believe me, I know that at the root this is a legislative issue.
- Benjamin_Dobell 5y agoMy 3 year old daughter was recently diagnosed Type 1. Soon after her diagnosis I discovered a heap of articles about the Open Insulin Foundation. I was even on their website 24 hours ago. However, for the life of me I can't find anything "open" about the Open Insulin Foundation. Could someone please point me in the right direction where I can read anything with more substance than a news article quoting an interview? EDIT: Just to clarify. We're extremely fortunate that we're in Australia. Insulin is affordable/subsidised here, my daughter's CGM (and sensors) are free, and anything else we need is heavily subsidised too. I've no intention of biohacking anything to do with my daughter's Type 1. I'm asking the above mostly because I'm curious. Admittedly I find it a bit scary that I know so little about the manufacturing of something that is 100% vital to my daughter's survival. I'd like to know more.
- Natsu 5y agoI don't know about this place mentioned in the article, but there's a similar orginazation at https://cheapinsulin.org/ https://cheapinsulin.org/ that you can look into.
- 6502nerdface 5y agoTFA blames "big pharma's stranglehold" for high insulin prices, but interestingly the cheapinsulin.org explanation [1] seems to be much more about "big insurance", with pharma companies basically forced to kow-tow if they want their products to be covered. [1] https://cheapinsulin.org/high-insulin-prices https://cheapinsulin.org/high-insulin-prices
- tashi 5y agoTheir claim is that if the pharma companies lowered the cost of insulin but then refused to give rebates to insurance companies for it, the insurance companies would stop covering insulin for diabetic patients? And they're using a diagram created by a pharmaceutical trade group to explain this? I'll be honest: I'm skeptical.
- 5y ago
- nimish 5y agoIt'd be much better for the world if one of the tech billionaires spent the money on a biosimilar insulin that could undercut this cartel. It's disgusting that people in america die for lack of an essential drug.
- KaiserPro 5y agoI simply don't understand the healthcare system in the US. Its meant to be a free market, yet insulin costs a ridiculous amount. However Opioids and synthetic opioids are cheap as chips. To put it into context, In the UK the NHS buy Insulin at <$35 you can see the prices here: https://bnf.nice.org.uk/medicinal-forms/insulin.html https://bnf.nice.org.uk/medicinal-forms/insulin.html They come from the same companies and are produced to the same standard. How can a bureaucratic "socialist" care system get better price, and a much better availability than a "free market" system. (thats rhetorical, I know why) Given the number of non and under insured, I just don't understand why its not swinging elections.
- maxerickson 5y agoGeneric Insulin Lispro is currently ~$50-60 per vial in the US, without any insurance or assistance from the manufacturer (though you do have to understand the system and go to specific pharmacies to get that price). The reason it's not a big issue in elections is because lots of people don't vote.
- dempsey 5y agoAnd every state administers its own Medicaid system under a different name. Lots of folks don’t even realize that their free healthcare is mostly coming from the feds. In AZ, I had to explain this to several friends that depend on AHCCS.
- fernandotakai 5y ago>I simply don't understand the healthcare system in the US. Its meant to be a free market, yet insulin costs a ridiculous amount. the problem? patents https://www.hopkinsmedicine.org/news/media/releases/why_people_with_diabetes_cant_buy_generic_insulin https://www.hopkinsmedicine.org/news/media/releases/why_peop...
- anonuser123456 5y agoRead 'The price we pay' if you want to understand the US healthcare system. Most of the 'socialist' countries don't pay for R&D on drugs; US consumers do. They pay a marginal price based on production cost, but almost none of the fixed price investments in efficacy, safety studies etc. The US system in no way resembles a functioning market. It's a byzantine spider web of regulatory capture, patent abuse, bad incentives and inertia.
- slt2021 5y agoWhy not allow patients to buy generic insulin from overseas (from India for example) ? If I could just you know, ask a friend of mine to fly to India and bring a monthly supply of cheap India made generic of Humalog, that would be great, right? and if insurance company kicks in a few bucks for me, that would drive down the cost of care for insurance company as well
- xf1cf 5y agoSame reason you “can’t” do that with textbooks. The whole reason it’s cheap is the vast majority of the cost is shouldered by the west. If you were able to execute this arbitrage (and you should be able to but can’t legally) you would quickly find prices would lower slightly in the west and rise dramatically elsewhere. It’s all profiteering. By preventing price discovery they make a boatload of profit even after writing down the losses on “foreign aid”.
- Dracophoenix 5y agoThe FDA heavily restricts import of foreign drugs. That's been the case since the Thalidomide incident in the 60s. Essentially drug manufacturing is a closed market, not a free one. Even if one gets rid of the incumbents like Pfeizer or AstroZenica, the same system just breeds the same perverse incentives.
- dempsey 5y agoMaybe Mark Cuban’s company can produce it: https://costplusdrugs.com/ https://costplusdrugs.com/
- dnautics 5y agoThey're specifically targeting small molecules, the infrastructure for proteins is different, and probably won't work with their model (subcontracting small compounding pharmacies to make the drugs)
- DoreenMichele 5y agoSo this seems to be about the DIY biology rather than body hacking. https://en.m.wikipedia.org/wiki/Biohacking https://en.m.wikipedia.org/wiki/Biohacking I don't know if body hacking can help with Type I diabetes but diet and lifestyle can certainly help with other forms of diabetes.
- ggm 5y agoAs an observation, The UK, USA, Canada and Australia are all in the top 10 for type-1 diabetes incidence in the <14yo population, along with Finland, Sweden, Saudi Arabia, Kuwait, Norway and Denmark. Only the USA imposes private health cost burdens on the diabetics (from my quick scan of national health info on the web)
- swiley 5y agoI've never quite understood why there's no clandestine insulin market. You're working up GMO yeast metabolites, that's not exactly a new idea.
- grayhatter 5y agoWhy take the risk in selling something like that? You're never going to be able to make money on it. Or did you mean people should just make their own?
- deleted 5y ago[deleted]
- dragonwriter 5y agoThere is, it just isn’t clandestinely manufactured insulin. https://medicalxpress.com/news/2020-01-diabetics-black-canada-life-saving-insulin.html https://medicalxpress.com/news/2020-01-diabetics-black-canad...
- Causality1 5y agoin 1996 a vial of Humalog produced by Eli Lilly cost $21. Today, it's priced at $324 despite the cost of production remaining steady Honest question, how do pharma executives walk the streets? If I was engaged in activities that vile I'd be terrified of being murdered by a vigilante.
- foolinaround 5y agoIgnorant newbie question: Similar to a pulse oximeter that measures oxygen saturation non-invasively, is there some research on finding similarly the level of glucose in the blood, etc?
- mattkrause 5y agoA lot of people have tried, without much luck. Verily (part of Google/Alphabet) had a joint project with Novartis to build contact lens that sensed glucose in tears, but it didn't pan out. An analytical chemist has assembled a compendium of approaches that haven't panned out here: http://www.mendosa.com/noninvasive_glucose.pdf http://www.mendosa.com/noninvasive_glucose.pdf
- grouphugs 5y agoi don't personally have diabetis, not that i know of, but this is nice to hear about. tackling commodification is gonna be a really difficult problem
- clarge1120 5y agoIs insulin a dangerous drug? Is it addictive? Does it need to be so heavily regulated that only Big Pharma can manufacture and sell it?
- grayhatter 5y agoYes, if you make a mistake, you could easily overdose, hypoglycemia and die. Or underdose, and become hyperglycemic and enter an altered mental state where you'd be unable to function normally, or lose connection with reality. I don't think it's reasonable to expect everyone who takes or buys it, to be able to determine if what they need to inject into their body to survive is safe and functional. So yeah, I do think there should be laws and limits on what qualifies, and who's allowed to make it. Do I think a large corporation is the only thing able to do that? No, but I suspect that it'd be hard to prove you can make the minimum guarantees that it's safe from the first dose to the last. And that you have resources to attempt to compensate anyone you hurt if you do break those guarantees.
- Ice_cream_suit 5y ago"Humalog 100 IU/mL Cartridge Generic name: Insulin lispro 100 IU/mL PBS Listing: PBS/RPBS General benefit - 25x3mL and 1 repeat " Schedule: NSW: 4, QLD: 4, VIC: 4, SA : 4, WA : 4, TAS: 4, ACT: 4, NT : 4 " 25 vials of 300 units Humalog costs my patients between 4 and 30 Australian dollars. I can make a 5 minute phone call and get them larger amounts of insulin for the same price, if they are on bigger than usual doses.
- AstralStorm 5y agoThere is no stranglehold. It's being manufactured for peanuts everywhere that is not USA. That country suffers from no central negotiating body to drive down the price, and a manufacturer/insurer virtual cartel. In other countries, government either negotiated a good price, built or subsidized a quality factory. The remaining people who have problems are in parts of global south for various reasons, some of which involve exploitation and others bad government or warfare, leading to lack of resources and experts.
- silexia 5y agoThe real fundamental problem here is very easy to fix. We need to completely eliminate patents from our legal system. Doing so would fix the problem with insulin, as well as the problems with every other drug and with software and with tractors not being repairable and many other areas.