Biohacking Village - Hacking the Insulin Supply Chain

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Biohacking Village - Hacking the Insulin Supply Chain
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A group of mostly volunteer researchers in several biohacking labs around the world are working on novel protocols and open source equipment to produce insulin in hopes of reducing the cost of the drug, improving access to it, and involving more people in its production. and in research on diabetes treatments and medicine in general. Insulin, despite being known and used as a treatment for diabetes for almost 100 years, remains out of reach of roughly 50% of the 100 million worldwide who need it, according to the 100 Campaign. Even in the developed world, particularly the US, high costs prevent many patients from having enough, leading to severe health consequences, including nerve and kidney damage, cardiovascular disease, amputations, coma, and death. Anthony will speak about the history and the personal, philosophical and economic motivations of the Open Insulin project, and the context established by other patient-led R&D efforts in the diabetes community and the open source community. Then he will describe the technical and organizational aims of the project and the progress to date, and how to get involved.
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uh hello everyone uh thanks to uh nina and everyone at biohack village for having me um my name is anthony defranco and i'm one of the founders of the open insulin project and i'd like to tell you a little bit about the general uh problem that we're addressing and how we're approaching it and how you all can maybe get involved if you're interested
so uh let me begin um
the basic uh fact is that uh worldwide 50 of the people who need insulin to survive don't have access to it and when we take that figure into account and also look at the population of people worldwide with diabetes and uh some bounds that we have on the death rate that's directly attributed to it and we also look at the insulin access statistic here and we put all of the information we have together to get a rough estimate of what the uh impact of this situation is where you know fully half of people who need insulin to survive can't get it um a very rough order of magnitude estimate
is that about 20 million people you know 10 to 20 million people a year are dying uh due to lack of access to insulin worldwide uh to put that in perspective uh 12 million people per year was the rate that people were dying due to world war ii from all causes uh which was the deadliest conflict in history so um this uh situation where half of the people in the world lack access to insulin uh is really a crisis on a historic level you know it's something that it's hard to find anything that that compares to this um however unlike uh a war or uh you know a very uh kind of a complex problem like that um the fundamental technical realities of of making insulin and getting it to people are fairly simple so um we're gonna look a little bit of why despite that um there is a problem of this magnitude and how we can try to approach and how we are trying to approach it in the open insulin project
um so that that's kind of the worldwide situation um in uh here in america where the many uh people in the project are based um we know a little bit more now the worldwide situation is uh largely due to um you know supply chain issues and uh the kind of geopolitics around uh different countries access to markets so um those issues don't really exist within the u.s uh the u.s has plenty of infrastructure to get insulin to people um you know the technology to produce is well established here so um it's a little even even more puzzling to note that there's still a significant problem in the us so we want to look a little bit at that so here some figures on uh just the prevalence of diabetes in the u.s um you know almost half of people have uh either diabetes or a risk of developing it in a fairly short term just diagnose diabetes alone is a over 300 billion dollar a year cost for everyone having diabetes it significantly increases overall health care costs um and uh there's a bit more detail on how uh you know diabetes is contributing to the global death rate so this is another kind of data point a little bit more specific about we were talking about earlier where uh you know we can actually say that the deaths directly attributable to diabetes also quite significant so you know why why is this eminently treatable disease uh still causing so many deaths and uh why is lack of treatment even in an industrialized uh advanced uh technologically and infrastructurally uh country like the us you know why is this disease still causing so much harm and and so much uh clearly preventable death well one of the uh factors is that the uh you know supply of insulin even though it's very easy to make it empirically speaking just has a lot of trouble reaching the people who need it and the first step in that process is the manufacture of it and globally three manufacturers control uh almost the entire supply of insulin and that is true in the us as well it's true everywhere um so uh you know already we're seeing that at the very first step in the supply there is uh a kind of uh restriction that may prove significant um and uh as a result the uh list prices have risen uh on a you know roughly exponential trajectory um so uh this has been part of a pattern of all of the major manufacturers raising their prices at about the same time by about the same increment for decades and um you know this has resulted in the list price becoming uh unaffordable for many people um and because of the complexities in the us for instance the us kind of has a strange health care system where uh you know some aspects of the prices are subsidized in various ways by different parties who negotiate amongst themselves you know there's a very complex system involving insurers and manufacturers and pharmacy benefits managers and pharmacies um and there's a set of complex and mostly secret agreements among them as to you know what people are actually paying but anyone who doesn't have insurance which you know is tied to having a job uh largely in the us you know they're likely to have to pay that list price and to be unable to afford it so this is you know implicated in what the problem may be as we come to understand it more and then the result of that has been that one in four people with diabetes in the u.s uh have uh reported rashing their insulin and uh not taking as much insulin as you need puts you immediately a much greater risk of the complications of diabetes in the short term you can develop diabetic ketoacidosis which is uh potentially deadly within hours or days and in the longer term if you're not taking as much insulin as you need you can develop the longer term complications diabetes which are many of which are listed here you know blindness cardiovascular disease and amputations for example um so
it's it's a rather grim situation but it's uh kind of difficult to uh understand uh why this would be the case since insulin in some form or another has been produced as a medicine for almost a century and even the [Music] state-of-the-art forms of insulin you know the most modern forms we have are largely off patent so why is it that there's still this access crisis why are only uh you know three manufacturers still controlling almost the entire market and able to price the insulin out of reach of many people so there have been some investigations into this where people have looked at the price uh increase patterns and are you know finding evidence that there may be collusion so you know some of these cases are still in progress here um but you know the fundamental reality is that um you know whether or not there is explicit collusion here there is this pattern of price increases and it has become unaffordable and uh um the technical level there's really not that much of a challenge to making insulin so um that's what we're focusing on now in our project is how to make insulin um so this is part of a broader problem in uh how health care and the economy around medicine is uh you know thought to uh what the the kind of dominant philosophy and how to manage it is um there was a uh a kind of economic theory that gained a lot of credibility in policy circles in the mid 20th century that uh said that uh you know making medicine is is is kind of uh different from uh other economic activities and that uh subsidies are needed to uh do all of the research involved and that uh a monopoly is uh an expedient form of subsidy so that uh you know that would be a sensible policy is to to tolerate and even encourage monopolies or on medicine um and and these claims actually collapse fairly quickly under scrutiny um you know most of the r d uh involved in making medicines is uh already done with public money in uh universities and um the companies themselves uh spend much more of their own budgets on other things like marketing and executive compensation that they do on r d and also this belief that monopolies are essentially harmless has been you know roundly debunked since then but nonetheless that's the system that uh we've inherited so um the result of this is that you know we've had this uh complex system of agreements grow up around it uh you know with the all those other you know parties like pharmacy benefits managers that look a little bit more ad later in the presentation and um you know they kind of partition up the market and it's very difficult to do anything uh outside of one of these these kind of proprietary partitions uh or to go between them you know even to the point that some people who are uh allergic or don't tolerate one brand of insulin are unable to get it covered by their insurance because the insurance uh only covers one brand at the you know preferred tier so even when there's clear medical necessity it still doesn't matter um in this system so you know it's it's kind of a uh it's not much of an economy in the end because it's so thoroughly um so thoroughly uh you know shot through with monopolies and uh monopolistic arrangements um and um we see you know the pr the problems that are typically associated with this um and uh you know it one of the most notable is pricing the poor out of uh of the market but also you know you can see that um uh progress that would uh threaten uh an an existing uh line of business is uh discouraged and you know one example of that was that uh you know an analyst here at goldman sachs is asking is curing patients a sustainable business model you know the answer uh in an economy where competition is essentially impossible is is no um because you know the profits are already being maximized by uh chronically treating things and so curing them doesn't make any sense if people don't have any alternative um and so that's kind of the unfortunate result of this um and this is something that uh you many have researched this uh one of my uh uh favorite uh theorists of this is uh is uh mr schmitz at minneapolis fed so you know he has looked at how monopolies actually do cause the harms that we've discussed and in the case of medicine the harms aren't just economic they are directly related to you know lost uh lives and and you know really uh tragic and tragically avoidable health consequences for people um so one of the things that denoted in general that we've seen in insulin is in the case of insulin in particular is that um you know we have uh uh seen people you know turning to crowdfunding because the cost of insulin when they lose uh health insurance or health coverage of some sort uh is you know more than many people make in a month it could be many thousands of dollars a month um so this is really a quite egregious example of how um you know people get priced out of the market uh fairly quickly and you know it's not just a subtle effect it is a really you know a very large difference in prices that people have to bear to the point where you know it'll be uh exceed everything else that they're paying for in life by quite a bit um so um just to make that a little bit more concrete the cost of manufacture of insulin is about five dollars per vial but the list prices have risen to the point where they're around 300 to 600 dollars per vial in some cases um and you know they're these conditions have persisted for decades and uh they've only gotten worse uh there hasn't been any successful pushback against them yet
um so what we are
trying to do is is kind of invert everything that we've observed in our project um so instead of relying on proprietary development and mechanisms of monopoly we are sharing everything that we develop in a commons and we are looking to produce insulin in low overhead distributed networks of small-scale manufacturing sites and instead of having this really strong [Music] conflict of interest between the producers who are motivated by profits and to deliver profits to investors um instead we're looking to have the uh people who use the insulin actually be directly involved in the uh the governance of the organizations that are making the insulin so that um they'll be able to make decisions as to how everything is managed in the interests of themselves and each other and the people using the insulin and a helpful side of the effect of this will hopefully be that we'll be able to be a lot more nimble and you know actually make a lot more improvements and not be incentivized to keep old things around just because they're already profitable and actually you know move things forward and uh hopefully make progress towards a cure that you know might not be economically feasible otherwise um and in part we're inspired by um other successes in the diabetes community um so although uh we're the first effort i know of to make insulin of itself open source for about 10 years now people have been working on artificial pancreas systems which is uh essentially a software algorithm that controls an insulin pump uh to determine the timing and the amount of the dose of insulin automatically uh usually based on feedback from a continuous glucose monitor and this is something that was already possible with technology from the 80s but the manufacturers just never seem to be able to bring it to market for whatever reason but once the technology to do this became more widespread you know once uh embedded computers became cheaper and easier to work with and knowledge of software and how to write these kinds of algorithms became more widespread individual diabetics and small groups were able to just pick up this work and bring it to completion within the space of a few years and now for almost a decade there have been diy artificial pancreas systems that you know many people have been relying on and trusting with their own lives and the lives of their children and uh you know they're working very well and this was done without any you know large r d budgets or institutional overhead it was just people collaborating in these horizontal networks to solve their own problems and each other's problems so we're working on uh enabling this for the insulin itself so that we can kind of complete the uh open source economy for treating diabetes um and it turns out that the same trends that made the diy artificial pancreas systems possible are also going to help us the uh you know more pervasive uh and cheap computing technology is going to play uh some role in letting us automate uh different aspects of the production purification and it also just makes it easier for us to collaborate with each other and uh so we're seeing signs that we can reproduce this kind of success and you know the result of that will be ideally to move uh this activity from these you know proprietary uh fiefdoms and into the commons and this is something that is good for people it's uh very good for business as well you know judging by how it's gone uh with uh you know open source software businesses um but you know a major difference is that it actually respects and promotes competition and innovation instead of sabotaging it and um you know causing everything to to stagnate in people to go on needlessly suffering and dying for no reason
so that's our goal [Music] and we're working on developing both the technology and the organizational forms that are associated with this to you know create a comprehensive alternative for the status quo and uh we're trying to prioritize the people who currently lack insulin and need it most in how we develop things so that we can most directly address the most urgent problems that people on society have so this is a closer look at the existing supply chain um just so that we can contrast it with what we're setting up so i mentioned earlier that there are you know these um multiple uh middle men who operate in these complex networks in between the manufacturer and the consumer and so i won't even really try to go through this in any detail but you can see that there are you know quite a few [Music] complex patterns of interrelationship among them and most of these are are done in secret so there's no transparency into how this works in any detail and you know it involves kickbacks being passed up and down the chain and um you know all kinds of uh things that just are are in themselves a great challenge to making any sense of things and so when when it the system produces the nonsensical uh result of uh you know denying people insulin that they need to survive that costs very little to make um you know this is kind of how that is able to uh grow and that kind of problem can grow and sustain itself in this environment of artificial complexity so we're going to address that by making things as simple and as direct as possible so right now we're working in our community labs to develop the the microbes and the technology and then we're going to publish the information associated with them and then using that public information about how the technology works we're looking at setting up uh a system of cooperatives where the insulin users can participate directly in the uh the ownership and the governance of those uh organizations and we may also be partnering with uh hospitals and local pharmacies that already do work that is uh similar in some technical aspects to this and they already have uh you know people who would need the insulin uh they have relationships with them and uh we may also be looking at uh collaborating with local and state uh governments and um you know aside from these fairly small and and simple low overhead uh organizations it's going to be as as direct to the users as possible so um a closer look at some of the technical work that we're doing um and this is uh you know this is just just a general look at how protein production purification works and how this applies to insulin so um right now we've designed some genetic modifications to some microbes uh we have uh actually three systems we're working on now this is two of them but we have two yeast based systems for producing uh insulin chlorine which is a long-acting insulin and one e coli based for producing uh lispro which is a rapid acting insulin and so we are uh have ongoing work with the microbe engineering um some of it has has uh produced some small yields already but we're working on getting the the production to be reliable in the yields to a practical level and then once the microbes are engineered we're going to focus on a small scale purification system initially using um proprietary equipment but we're also working on making open source equipment for that and uh we've also excuse me we've also started to look at the uh verification and uh quality assurance questions of making that product uh suitable for use as a medicine and so once we've got all these aspects in place we've got all the technical problems for making insulin in a small scale setting solved so here's a look
at a kind of demonstration version of a bioreactor so it is uh essentially just a bit of plumbing and aside from having to keep it sterile there isn't anything terribly technically complex about it you're going to have some you know some pumps and some valves and temperature sensors ph sensors and and that sort of thing and then for uh the purification you're going to have uh you know perhaps a column which is a you know just a tube with certain ports filled with some materials that may be a little bit costly but for the most part this is something that you know you can as as these people have for this demonstration unit they fit everything you need to do it onto a tabletop so um you know we can work in a similar envelope um you know the corner of a room could be enough to produce insulin for you know a small city if we are running at a reasonable efficiency
and as a result we can bring the cost of insulin back down to what the cost of production already is so our own projections for what our cost of production be are in line with what they are for the large scale production that dominates right now so based on our preliminary model we could be providing this to people for seven dots of vial which is you know very close to the three to five dollars a vial that it's usually produced for so um you know we're seeing that there isn't really any economy of scale here and that you know there isn't any kind of actual technical or economic justification for the uh limited supply that we see right now um so as i mentioned we are still working on uh the microbe engineering but we have started to work on the open hardware as well so we're making progress on the uh technical aspects of this process and um we're looking forward to uh reaching some of the milestones on that fairly soon and we've you know begun working not just on the open hardware but also on some of the regulatory and organizational research to make that hypothetical system of cooperatively organized production a reality so you know that's going to uh involve some outside of the box thinking and we're you know getting into looking at a lot of interesting precedence like uh ideas from personalized medicine and um other forms of cooperative medicine and health care and um state level frameworks for things like uh direct public offerings you know um financial mechanisms and so it's it's really um taking us uh on uh both a deep and a broad look at a lot of very promising alternative ways of doing things that we hope will apply not just to insulin but to perhaps medicine in general in business in general in the near future as well so here's a closer look at the bioreactor design that we have just recently just recently completed the first look at so as you can see the bioreactor when we break it down to the specifics as i was saying before it's it's it's kind of some pumps and some sensors and uh you know an air pump and some heating pads and um this is a design that was uh based on one that uh another uh fellow in the community uh sebastian and kosioba is working on so he was kind enough to show us around his design and we have a group of interns that's working on this right now so this was made by uh paige hinoka and uh it took her just a couple of weeks to come up with this and the bill of materials for this comes out to [Music] 115.80 so this would have a capacity of a few liters and a capacity of a few liters if you run it uh uh fairly close to continuously that can supply insulin for a few thousand people so uh you know this is still leaving out the purification and uh the qa aspects but you know those don't add an order of magnitude more cost to this so you can see that the you know capital requirements for doing this are that negligible um so we've talked a bit about how we're looking to organize the production ultimately but we are also organizing the r d work that we're doing right now in a similar way so we're uh fairly horizontal open source oriented uh organization we're taking cues from other open source foundations that are stewards of different kinds of technology so we have groups working on the uh the wet lab r d the hardware supporting software for our organization developing the business plans doing the legal and policy research and uh doing communications with our supporters and uh touching on uh fundraising as well and here's a few folks from the team you know we are a loosely organized network of volunteers so people um kind of come in and out we weren't able to list everyone but here are a few of the more uh regularly involved folks um you know jan is our uh chief scientist working on the microbe stuff um and uh david and max are also working on that here in our oakland lab alex hay recently developed an open source glucometer which we have a blog post up on our blog about which is very interesting uh nicole has been helping us with the legal uh work that we're doing ife uh software uh louise is working on communications and fundraising with the interns jessica is also working on the micro engineering in the wet lab and with an intern group as well raymie has helped us with some collaborations and kadi is actually one of our international collaborators uh in senegal who is getting her lab set up now to join us and perhaps help us look at some new possibilities involving plant-based production so a very interesting potential there within our group we uh fairly uh horizontal as i said so you know we uh kind of go on the open source credo of uh you know loose consensus and uh working protocols we could say and just take on tasks on our initiative for the most part so we've had to collaborate remotely so you know we're doing things in online meetings which anyone is welcome to join um and you know if anyone is interested in that you can go to our website and we have some posts up there that will give you some contact information information about the meetings so uh you know with that um i'd uh yeah i'd be happy to uh hear from
many of you if you're interested in learning more about what we're doing or uh you know helping with any aspect of this and uh the more the merrier and the more people are helping out the faster we're going to be able to solve this very urgent problem so uh it would be a pleasure to hear from you and again thank you for having me here and thanks to nina and the hack village folks