Breaking Good
September 16, 2019 2:59 AM   Subscribe

Breaking Bad but they're synthesizing insulin: Walter White, a 40-year-old teacher with limited health insurance can't afford to pay for his diabetic son's insulin... (continues). Not a joke: Biohackers with diabetes are making their own insulin – it’s the Open Insulin Project, "a team of Bay Area biohackers working on newer, simpler, less expensive ways to make insulin", and "who believe that insulin should be freely available to anybody who needs it".
Diabetes has become the most expensive disease in the United States, reaching $327 billion a year in health care costs, $15 billion of which comes from insulin. And the cost of insulin keeps climbing [...] Without insurance, costs from diabetes care can tally up to thousands of dollars per month. As a result, 25% of the 7.4 million Americans on insulin have started to ration the drug, which can result in deadly consequences. Open Insulin hopes to change this. [...]

“If we can make this stuff in our janky lab on a $10,000 a year budget, there’s no way it should cost this much,” says Thornton Thompson, a molecular biologist who is part of Open Insulin. “One of the big goals of the project is just to demonstrate that.” [...]

In many ways, the Open Insulin group’s ambition hearkens back to the intentions of the original discoverers of the drug. In 1923, Frederick Banting, Charles Best, and James Collip sold the patent for insulin to the University of Toronto for $1 each because they believed such an essential medicine should be available to everyone who needed it.
More articles about the project:

Open Insulin: biohackers trying to create a "microbrewery" for insulin as an answer to price-gouging (BoingBoing, May 2019)

Do-it-yourself insulin: Biohackers aim to counteract skyrocketing prices (Deutsche Welle, May 2019)

Insulin has become so expensive that this diabetic is trying to make his own (CNBC, Jan 2019)

After a century, insulin is still expensive – could DIYers change that? (The Conversation, Sep 2018)

Renegades join forces for affordable insulin (Neo.Life/Medium, Nov 2017)

More on the price of insulin:

Insulin: a case study for why we need a public option in the pharmaceutical industry (Stat News, Sep 2019)
Today, three companies — Eli Lilly, Novo Nordisk, and Sanofi Aventis — control virtually the entire global market for insulin. This oligopoly, which may have colluded to fix insulin prices, charges exorbitant amounts for a medicine that people with type 1 diabetes cannot live without. Since the 1990s, they have raised the price of insulin more than 1,200%.

In the past few years we’ve learned about the tragic and preventable deaths of 20-somethings who simply couldn’t afford their insulin, even with insurance. Diabetes-related complications like amputations are on the rise again after decades of decline, and many people who depend on insulin to survive are sacrificing their rent, their cars, and their dignity just to get by.

It’s an unconscionable evolution for a drug developed almost a century ago in a public lab, in the public interest. How did it come to this?
Resources: The Insulin Price Crisis in the U.S.A. (T1International)
posted by bitteschoen (53 comments total) 59 users marked this as a favorite
 
I looked at the first couple of articles, and I understand that the cost of insulin is going up due to price gouging, but I don’t understand why. The patents have to have expired by now, and it should be available as a generic for anybody who wants to market it. Does anybody have a simple explanation?
posted by KGMoney at 3:51 AM on September 16, 2019 [6 favorites]


Perhaps the shortest explanation is in the article from The Conversation, where it says "Regulations keep insulin expensive" rather than patents – because insulin is a biological drug, the process of biomanufacturing is more inconsistent than chemical synthesis of non-biologic drugs like aspirin.
So if a new company wants to make insulin, that insulin has to be tested on patients in expensive clinical trials. Bringing a biologic drug to market can cost as much as $250 million. No company can afford that lump if it can’t file for a patent to recoup the investments.
There’s also this comprehensive summary from 1TInternational, the – 8 Reasons Why Insulin is so Outrageously Expensive. It’s a combination of a situation of oligopoly, with only 3 companies controlling the global market, and again, the different process of making a "generic" insulin because it’s a biological product –
Creating what is called a biosimilar is a lot more complicated and expensive than just duplicating a chemical molecule. There is little market incentive to produce biosimiliars because it costs nearly as much as making new drug, and companies must go through all the approval stages and trials that a new drug is required to go through.
– then there’s the practice of patent "evergreening" (new patents being filed around the old ones for each slight new factor like method of delivery etc.), price fixing, and other factors... It’s not simple really!
posted by bitteschoen at 4:07 AM on September 16, 2019 [12 favorites]


Here’s another short summary about the patent aspect, from a Johns Hopkins study: Why People with Diabetes Can't Buy Generic Insulin
A generic version of insulin, the lifesaving diabetes drug used by 6 million people in the United States, has never been available in this country because drug companies have made incremental improvements that kept insulin under patent from 1923 to 2014. [...]

In a study published March 19, 2015, in the New England Journal of Medicine, authors Jeremy Greene, M.D., Ph.D., and Kevin Riggs, M.D., M.P.H., describe the history of insulin as an example of “evergreening,” in which pharmaceutical companies make a series of improvements to important medications that extend their patents for many decades. This keeps older versions off the generic market, the authors say, because generic manufacturers have less incentive to make a version of insulin that doctors perceived as obsolete. [...]

Biotech insulin is now the standard in the U.S., the authors say. Patents on the first synthetic insulin expired in 2014, but these newer forms are harder to copy, so the unpatented versions will go through a lengthy Food and Drug Administration approval process and cost more to make. When these insulins come on the market, they may cost just 20 to 40 percent less than the patented versions, Riggs and Greene write.
posted by bitteschoen at 4:27 AM on September 16, 2019 [11 favorites]


"Since the 1990s, they have raised the price of insulin more than 1,200%."

Needs a footnote: in the United States.

Here in the UK, insulin costs—wholesale, to the NHS—about a twentieth what it does in the USA, because the NHS has monopsony buying power and doesn't put up with shit like that from suppliers.

(Also, insulin is free to anyone with type I diabetes, again, thanks to the NHS, which provides universal coverage free at the point of delivery.)

TLDR: the US insulin nightmare is entirely self-inflicted by the for-profit medical/insurance/pharmaceutical complex, and could be solved with the stroke of a pen if they socialized their healthcare system.

(Then maybe try some pharma executives for corporate homicide and jail them for life.)

PS: human insulin manufactured using GM yeast has been a thing for decades. This isn't rocket science. (I'd be more concerned about QA and aseptic manufacturing process—the stuff is an injectable, after all—than the technical difficulty of feeding a yeast culture then extracting a protein from it.)

Signed, an ex-pharmacist.
posted by cstross at 4:32 AM on September 16, 2019 [137 favorites]


PPS: I fail to understand why, with a clear oligopoly (three licensed suppliers) and a clear price-gouging effect (1200% price rise in a decade or so) the Federal Trade Commission isn't riding their ass with a price-fixing cartel investigation. If they could go after ebook publishers (and Apple) for charging too much for books (compared to Amazon), surely the pharaceutical incumbents are a juicy fat target for anti-trust?
posted by cstross at 4:37 AM on September 16, 2019 [53 favorites]


From my favorite candidate's website:
Elizabeth Warren’s Affordable Drug Manufacturing Act would allow the Department of Health and Human Services to step in where the market has failed. HHS would manufacture generic drugs in cases in which no company is manufacturing a drug, when only one or two companies manufacture a drug and its price has spiked.
posted by CheeseDigestsAll at 5:27 AM on September 16, 2019 [34 favorites]


Friendly reminder: Insulin was effectively researched and brought to market by the Canadian government.

If anyone wants to talk about the faults of socialized medicine, remember to remind them that nearly all of the medications, therapies, and treatments being sold to us today were discovered and researched on the taxpayers' dime.
posted by FakeFreyja at 6:19 AM on September 16, 2019 [21 favorites]


I wonder how far away from Canada you have to be before it stops being the more affordable option for insulin. It's now such a thing in Minnesota that 35N - the road you'd take to Thunder Bay - has billboards about affordable insulin programs.
posted by dinty_moore at 6:33 AM on September 16, 2019 [7 favorites]


> I fail to understand why, with a clear oligopoly (three licensed suppliers) and a clear price-gouging effect (1200% price rise in a decade or so) the Federal Trade Commission isn't riding their ass with a price-fixing cartel investigation. If they could go after ebook publishers (and Apple) for charging too much for books (compared to Amazon), surely the pharaceutical incumbents are a juicy fat target for anti-trust?

In the current state of the U.S. government, anti-trust is primarily used as a tool by companies (through their lobbyists) to hold down competitors, or by politicians as a threat to convince companies to bankroll their political action committees. There's extremely little interest among the dominant party here to use these regulations in the ways they were originally intended: for consumer protection and to prevent monopolies and monopsonies from disrupting other markets.
posted by at by at 6:38 AM on September 16, 2019 [13 favorites]



....remind them that nearly all of the medications, therapies, and treatments being sold to us today were discovered and researched on the taxpayers' dime.


This is a DEMONSTRABLE lie.

I am a researcher who is funded by govt money and who is for socialized medicine and LAGC.

BUT

Drugs. don't. come. from. the. university. and. the. NIH. sector. AT ALL in any meaningful way. A few lead clinical candidates do, and the occasional unicorn.

---
The following things can be simultaneously true

i)Pharmaceutical companies are greedy capitalist rent-seeking, protectionist monsters.

ii) Who also spend tens of billions of $ of real money every year employing tens of thousands of researchers and clinicians taking drug candidates from discovery programs (>99% failure of every compound tested) through clinical trials (>90% of those compounds from the previous step fail at this step).

If you want govt to do this, set up something the equivalent size of, the US navy. Because that's what you need. If all drug companies went away today, unless a small but significant percentage of GDP was set up to fund drug research at dozens of new institutes...you wouldn't have new drugs.
posted by lalochezia at 6:49 AM on September 16, 2019 [12 favorites]


If, as you claim, that it's a demonstrable lie, than prove it. You make good claims and offer no proof, rather like some of our politicians. If you want to tell me that the moon is made of green cheese, I will ask for the proofs.
posted by evilDoug at 7:26 AM on September 16, 2019 [2 favorites]


lalochezia: (>99% failure of every compound tested) through clinical trials (>90% of those compounds from the previous step fail at this step).

Do these numbers apply to research on new types of insulin? [/he says as he injects cheap Canadian insulin]

If you want govt to do this, set up something the equivalent size of, the US navy.

I like the direction you're taking this. :-)
posted by clawsoon at 7:35 AM on September 16, 2019 [5 favorites]




Diabetes is pure profit, really
posted by Ray Walston, Luck Dragon at 7:55 AM on September 16, 2019 [2 favorites]


It seems to be me that governments should just manufacture generic insulin themselves.
posted by srboisvert at 8:38 AM on September 16, 2019 [3 favorites]


Here in the UK, insulin costs—wholesale, to the NHS—about a twentieth what it does in the USA, because the NHS has monopsony buying power and doesn't put up with shit like that from suppliers.

(Also, insulin is free to anyone with type I diabetes, again, thanks to the NHS, which provides universal coverage free at the point of delivery.)


Same applies in Australia. Insulin is supplied free of charge to anybody it's been prescribed for who registers with the National Diabetes Services Scheme. Other diabetes-related equipment is available through this scheme as well, some of it free to the end user and some with a peppercorn co-payment.

TLDR: the US insulin nightmare is entirely self-inflicted by the for-profit medical/insurance/pharmaceutical complex, and could be solved with the stroke of a pen if they socialized their healthcare system.

Nobody with a clue could dispute this.
posted by flabdablet at 9:14 AM on September 16, 2019 [11 favorites]


unless a small but significant percentage of GDP was set up to fund drug research at dozens of new institutes...you wouldn't have new drugs.

I agree with your core point that drug companies do fund quite a bit of the innovation but to your above point I am 100% OK with that. We already spend a significant portion of our GDP on drug research, it's just funneled through for-profit corporations that extract a cut from it.

Nationalize drug research and make all the results free to the world.
posted by Candleman at 10:18 AM on September 16, 2019 [15 favorites]


I'm willing to bet a lot of the people doing that company funded work got their education and training through the help of NIH & NSF grants.
posted by stevis23 at 10:26 AM on September 16, 2019 [7 favorites]


Obviously the advantage of a nationalized healthcare system is you get insulin for free as a patient, but the oligopoly situation and the patent evergreening and other practices to drive up costs mean even a national healthcare system can be paying too much for insulin, even if not as much as in the US where there is no price cap. For instance, studies have found that even in the UK the NHS has been paying increasingly higher costs for insulin, with an increase of 130% over a ten year period. A lot of money could be saved if there was more competition.
posted by bitteschoen at 11:06 AM on September 16, 2019 [6 favorites]


Drugs. don't. come. from. the. university. and. the. NIH. sector. AT ALL in any meaningful way. A few lead clinical candidates do, and the occasional unicorn.

That really depends on what you mean by "meaningful way." Lisa Larrimore Ouellette at Stanford Law has a nice overview, including the stat that in 2015, the federal government was responsible for 1/4 of all R&D expenditures. As for how much that translates into marketable drugs:

To illustrate the distinction between direct and indirect influence: Bhaven Sampat and Frank Lichtenberg found that of drugs approved by the FDA from 1998 to 2005, 9% of all drugs and 17% of "priority-review" drugs (those reflecting "significant improvements") have at least one public-sector patent (i.e., a patent based on publicly funded R&D), though they will typically have private-sector patents as well. But a much higher portion reflected more indirect influence of public R&D: half of all drugs and two-thirds of priority-review drugs had a private-sector patent that cited a public-sector patent or publication.

It's clearly not the case that all pharma co.'s do is privatize public research. Absolutely. But there's a really significant public investment in these drugs, in the basic research, and in the training of folks who will then go to work for private industry. It's not the boogeyman case, but it's certainly appropriate for the public to examine the fairness of the arrangement.

Also, this, from the Congressional Research Service, is good, esp. p37 on.
posted by factory123 at 11:20 AM on September 16, 2019 [12 favorites]


This is a DEMONSTRABLE lie.

I am a researcher who is funded by govt money and who is for socialized medicine and LAGC.

BUT

Drugs. don't. come. from. the. university. and. the. NIH. sector. AT ALL in any meaningful way. A few lead clinical candidates do, and the occasional unicorn.


It's mixed. A lot of the core, essential basic research (which direct pharmaceutical research relies on) is publicly funded. As well, it may not be a majority, but the development of many specific drugs and treatments are also publicly funded; I personally have known someone who developed a treatment during her publicly funded PhD which was sold, ready-to-scale-up to a pharmaceutical company for $73 million (which all went to the lab/university). The pharmaceutical company proceeded to make even more money from it.

Pharmaceutical companies also pay for basic research through research grants - though some of that is also subsidized by public money (e.g. a grant pays for staff and supplies, but not for overhead costs like buildings or the salaries of the head researchers).

What is true is that there are many innovations which were partly or primarily funded by public money (through public universities, government grants, etc.), but without the ability to scale up, the production (and profit) is then privatized. A lot of people, including myself, are okay with this to a point - but not okay when these profits are seen to be egregious, especially when it involves essential life-saving treatments like insulin or epipens where the value added by the pharmaceutical companies is negligible.
posted by jb at 11:46 AM on September 16, 2019 [16 favorites]


So... I'm curious. There are fairly cheap insulins available, notably the $25/vial Walmart version. They aren't as good as the modern versions, and thus a lot of people do much better if they can get proper versions. But I have to think they'd be more trustable than any homecooked version, and certainly better than going without. This isn't to downplay the awfulness of the US system, people should be able to get the insulin that works best for them and it's yet another crime of our health system that they don't, but I'd think directing people who run out towards cheaper older insulins would be more sensible practice than home cooked versions or dying of missing insulin. Or were the various people who have died lethally allergic or something?
posted by tavella at 12:12 PM on September 16, 2019 [1 favorite]


There are fairly cheap insulins available, notably the $25/vial Walmart version. They aren't as good as the modern versions, and thus a lot of people do much better if they can get proper versions. But I have to think they'd be more trustable than any homecooked version, and certainly better than going without.

There are those for whom even the $25 Walmart version is too costly given their other living expenses.
posted by EmpressCallipygos at 12:25 PM on September 16, 2019 [5 favorites]


As with most things, the devil is in the details... as with most things on here, seems that the role technology sometimes gets lost/hidden/obfuscated in the discussion - it's about the pumps folks!

Calling everything "Insulin" makes this whole discussion a bit less honest and really makes me wonder at the motives here? There are inexpensive insulin options which require more work, more testing, more attention and thereby increase likelihood of poor outcomes... I lived on these methods for many years and yes... it sucks, but it is life.

Plain ole insulin does NOT go in *insulin pumps*... that is the $25 a vial at Walmart (only walmart)... $25 Type-R has an initial onset of 30+ min instead and lasts in the system for 4-6+ hours with a less predictable absorption curve... (can't be used predictably in a pump)

I am all for lower cost "more convenient" versions of the ill-explained versions of the insulins listed here... they're great! I love the short onset times, the better absorption curves - especially Glulisine (arguably better than Glargine)... but these are NOT the only insulins on the block and saying that people are "FORCED TO RATION" their insulin is a bit of a stretch at $25 a vial for Type-R Human Insulin... they're "forced to ration" *if* they wanna use their pumps and stick with their cushy easy live style choices... (that's me included - i make this choice)... better outcomes, more like having a "pocket pancreas" - but it's not quite the easy/attention grabbing headline... FORCED TO CHOOSE BETWEEN LIFE SAVING INSULIN/ FOOD.

The choice is between better, easier lives... with better treatments and better outcomes... using both the better insulins and the better delivery devices with computer controlled monitoring/delivery!

without this... one must 1) use regular R vials from Walmart for $25 and 2) use a long acting insulin in addition one of those Ultra-Lente 20-30 hour acting insulins! [or some other formula driven combination of very old school non-pump controlled insulin]

Now it is "possible" to do it all with the old Human Insulin - type R (assuming you don't have other co-morbid issues)... but it's also possible to hold your breath for an hour... I mean... I can't but someone can!

Just try to stick with facts OK? Otherwise we're all running around yelling THE SKY IS FALLING THE SKY IS FALLING!

Now, i'll go back to trying to figure out if i can afford my expensive healthcare plan with the nasty deductibles plus the HSA AND the formula covered modified insulin for my overpriced Medtronic Device... and all of the expensive consumables... using a spreadsheet... and all of my education afforded perks which allow me to pretend that everyone else is "the same" and has all the same opportunities as me...

-or- if it's time to throw in the towel and start "rationing" my insulin (which should mean stepping down to what people without good insurance do, what people with fewer choices do... you know, "get by" and not whine about how hard life is)?

YES our healthcare system sucks! That is the problem... FIX HEALTHCARE!

mixing up the whole discussion by claiming that people have been "rationing" their insulin (when it's waaaay more complicated... cause life/healthcare IS complicated)... is a disservice to us MEFITES! We're smarter than this... come on... claiming that "INSULIN" is INSULIN is Insulin is insulin... we're gonna argue over pig Human Insulin vs Protein enhanced Human Insulin (Ford vs. Ferrari) and needles vs. pumps... and testers/test strips vs. "closed loop"/ "Hybrid Closed Loop" bluetooth enabled testing devices... omg... just focus on fixing the healthcare system... don't let the Drug Companies, etc. get us all arguing over which version of our demise is better... "No, i really like not having healthcare... I enjoy going into bankruptcy when i make uninformed decisions!" But I digress.
posted by Jiff_and_theChoosyMuthers at 12:46 PM on September 16, 2019 [12 favorites]


@bitteschen, Yes, this a hundred times. Just because the patient is not paying for the insulin increases doesn’t mean they aren’t being paid for. Cost of insulin in all forms has increased, cost of new forms of insulin usable in pumps, pen injectors, and for different strategies in controlling long-term vs short-term results have increased. Newer forms of insulin give greater flexibility to those dependent on it to live. The less expensive forms (still not cheap!) are much harder to manage often leading to worse control, therefore worse outcomes. We are all paying the cost of high priced pharmaceuticals, whether nationally through NHS/Medicare costs, or collectively through insurance costs, or most directly as individuals with limited, inadequate, or no insurance at all. Even in countries with nationalized health care and negotiated pharma rates, costs are increasing.
posted by drossdragon at 1:08 PM on September 16, 2019


If, as you claim, that it's a demonstrable lie, than prove it.

Saying public funding has nothing to do with it is a little much because public funding does pay for basic research. I think what the comment is really saying is that it's the drug companies that pay for the (extremely expensive) process of turning basic research into workable drugs, and that it is misleading to describe the situation in a way that takes this part for granted. That much I think is totally fair.
posted by atoxyl at 3:49 PM on September 16, 2019 [1 favorite]


There are those for whom even the $25 Walmart version is too costly given their other living expenses. Absolutely. But the open insulin people could just buy the cheap stuff at cost in big batches and keep the production with the people who already have FDA approval to produce.

Or collectively participate in the multiple lawsuits trying to change exactly this kind of absurd drug inflation.

As the Doctor from the Scripps institute writes: There are so many things that could go wrong in the process: the sterilization, the efficacy, the safety. It’s like Murphy’s law, here. These are potent drugs that can have serious side effects. I just don’t see that that is a safe or practical route.

I'm increasingly exhausted by well-meaning hackers with engineer's disease trying to disrupt legislative problems by reinventing the wheel. Clearly nobody actually learned anything from Theranos.
posted by aspersioncast at 4:54 PM on September 16, 2019 [5 favorites]


My wife's insulin bill (Medtronic Insulin Pump) is $2000. A month. At retail. (5 vials X $400 each)

Supplies for her pump are another $2000 a quarter. IIRC.

Everybody pays retail. BC/BS pays the same price I do on my own.

Luckily, the out-of-pocket max on our high deductible insurance plan is only $4000 a person. So $700/mo in premiums for two adults, plus a $4000 bill every January, and she gets "free" healthcare Feb - Dec.

'Murica! Capitalism!

Forgot to mention the new $10,000 pump every 4 years, because planned obsolescence is a thing.
posted by COD at 5:12 PM on September 16, 2019 [4 favorites]


Anybody know what the situation in the UK if you're buying insulin outside of the NHS? My cat has diabetes, and I assume that even in a more reasonable country I'd still be paying out of pocket for her insulin. Luckily a cat is pretty small, so that $400 vial of insulin lasts quite a while, somewhere around 6 months.

On that note, once we manage to get it for humans, universal, single-payer health care for pets would be a godsend for many. I've been lucky enough to be able to afford good care for my cat, but most would not be able to, and that's a very difficult position that no one should be put in. Pets are family.
posted by vibratory manner of working at 5:46 PM on September 16, 2019


vibratory manner of working: Anybody know what the situation in the UK if you're buying insulin outside of the NHS? My cat has diabetes, and I assume that even in a more reasonable country I'd still be paying out of pocket for her insulin.

I can't speak to the UK, but I know that here in Canada you can get a 10mL vial of Humalog over the counter at virtually any pharmacy for $30-$40 CDN, no prescription necessary. (I know this because I have done so more times than I can count.)
posted by clawsoon at 6:45 PM on September 16, 2019 [1 favorite]


I wish I had a reference to back me up, but the claim by Big Pharma that they invest vast sums in developing new drugs is a complete lie. When looking at R & D costs automobile companies spend more money then individual pharma companies. Investments in the pharma sector are strictly driven by profits and do not match the needs of the population. Vast sums are spent on cancer treatments because the profit margins are so large. The rate of return for pharma companies is high and unrelated to any external costs.
The insulin situation, along with the Epi-pen and the opioid epidemic are proof positive that the pharmaceutical industry commonly engages in murder for profit. They will never reform on their own. External intervention is the only method to stop them from making money by killing people.
posted by Metacircular at 11:09 PM on September 16, 2019 [2 favorites]


> As the Doctor from the Scripps institute writes: There are so many things that could go wrong in the process: the sterilization, the efficacy, the safety. It’s like Murphy’s law, here. These are potent drugs that can have serious side effects. I just don’t see that that is a safe or practical route.

I'm increasingly exhausted by well-meaning hackers with engineer's disease trying to disrupt legislative problems by reinventing the wheel. Clearly nobody actually learned anything from Theranos.


i'm a moderate: i think that both the socialists and the anarchists have good ideas. on the one hand, we must apply socialist solutions: we must nationalize the drug industry. it is both obscene and inefficient to leave the health of so many people in private hands. on the other hand, there is no inherent reason that anarchist hacker collectives can't replicate the production consistency and safety of capitalist drug manufacturers: the important thing is maintaining enough transparency to allow interested parties to verify that their processes are sound.

invoking the specter of theranos in this case is completely uncalled for; theranos was a for-profit organization with a fake product, supported by capitalist money and with ties to corrupt (or perhaps just staggeringly naïve) stanford researchers. meanwhile, the open insulin project is an implicitly-and-sometimes-explicitly anarchist project with ties to qualified biochemists and with a real product, aimed at bypassing capitalist control over people with diabetes.

the anarchist solution here isn't ideal, but it's better than maintaining the capitalist chokehold over people with diabetes. if you oppose the anarchist solution, i recommend you take material action to support the nationalization of insulin production.
posted by Reclusive Novelist Thomas Pynchon at 11:18 PM on September 16, 2019 [5 favorites]


My understanding is that a vial is about a month's supply, and $25 is what you likely would pay as a copay even for the more expensive modern versions. It's really not a significant barrier to anyone but people who are homeless-level poor, and the people I've seen stories about dying from rationing insulin were from middle to working class families. Again, I totally agree that insulin should be free to the patient and that people should have access to modern insulin! But the insulin hacking schemes strike me as the usual techbro useless complication, when it would be far more sensible to a) publicize cheaper forms as a interim (if not great!) solution for people who don't have access to insured versions, rather than killing themselves by not taking insulin and b) continuing to lobby for health care reform so that people have proper access.
posted by tavella at 11:20 PM on September 16, 2019 [2 favorites]


the usual techbro useless complication

...like Debian, Nightscout, OpenAPS...
posted by flabdablet at 12:18 AM on September 17, 2019


> My understanding is that a vial is about a month's supply, and $25 is what you likely would pay as a copay even for the more expensive modern versions.

ah, a copay. and if there’s a 25 dollar copay, who, praytell, is paying the rest of the listed cost?
posted by Reclusive Novelist Thomas Pynchon at 1:01 AM on September 17, 2019 [1 favorite]


> the usual techbro useless complication

...like Debian, Nightscout, OpenAPS...


open source software has nothing to do with guerrilla biochemical labs, no more than theranos does. it’s best not to pretend that these two movements are the same thing. although the actual lab is not an example of engineer’s disease, the tendency to view software production as analogous to all other fields, fields that require radically different skillsets and manufacturing processes, is an example of engineer’s disease.
posted by Reclusive Novelist Thomas Pynchon at 1:05 AM on September 17, 2019 [4 favorites]


open source software has nothing to do with guerrilla biochemical labs

I disagree. The motivation behind both free software and the Open Insulin Project is essentially the same: to make something useful and necessary, to have fun doing so, and to do it in a way that guarantees that the results are shareable in perpetuity.

Sure, industrial biochemistry and software development require different skillsets. Not trying to say otherwise. But the point is that these are people who have specialist skillsets, coming together to exercise them for their own betterment and that of those they identify as their community, because they can.

If they were just typical techbros they'd be doing it because they seek to be paid some outrageous amount by some gullible VC as their just reward for Being Disruptive. That's the Theranos model, and it's about as far removed from the Open Insulin Project as it's possible to get.

Accusing somebody of displaying Engineer's Disease for no better reason than that they have found something useful to do with the time it's obviously going to take to alter the course of the super-duper-stuportanker that is the US pharmaco-insurance-industrial complex? That's just lazy thinking.
posted by flabdablet at 2:11 AM on September 17, 2019 [4 favorites]


to do it in a way that guarantees that the results are shareable in perpetuity

...and specifically, to make this a central aim because one's moral code demands it.
posted by flabdablet at 2:20 AM on September 17, 2019


i mean you are exercised at someone, certainly, and you appear to be exercised at me, but the contents of your comment appear completely unrelated to the contents of my last two comments.

if (for the most part)you’re agreeing with me very strongly that’s, uh, okay i guess?

in any case, the similarity of motivations, which you’re focusing on in the first part of what you were saying, is much less important than you make it out to be, and the differences between computers, bodies, and the differing skillsets required to make things that go in computers vs. bodies, all of that is much more significant than you make it out to be.

moreover, taking the open source movement as your polestar or whatever is to my eye a very bad idea. this is specifically because the open source movement has no political analysis whatsoever; if it has a political analysis, it’s a fundamentally liberal one. open source developers typically work for capitalist-controlled companies, typically produce software under licenses that allow (and even encourage) use by capitalist enterprises, and are generally devoted to make things within the capitalist framework that simply make capitalism work more efficiently.

the corner of the movement that is in any way opposed to capitalist control — the free software people — are unfortunately led by someone who is a totally worthless bag of dicks — someone who defends the defenders of the most disgusting member of the bourgeoisie.

the open insulin project has potential in inverse relation to how much the people in it identify with the open source software movement. bodies aren’t computers, medicine isn’t computer engineering, and open source development is not an effective or meaningful political intervention.
posted by Reclusive Novelist Thomas Pynchon at 3:54 AM on September 17, 2019 [1 favorite]


ah, a copay. and if there’s a 25 dollar copay, who, praytell, is paying the rest of the listed cost?

For the Walmart version, that would be the entire OTC price for a vial, so I am not sure what you are asking here?
posted by tavella at 8:04 AM on September 17, 2019


Still, the Walmart version is the regular insulin that makes control difficult, while I can pay the same-ish money over-the-counter - no insurance, no co-pay - for Humalog here in Canada.
posted by clawsoon at 8:12 AM on September 17, 2019 [2 favorites]


Oh, it's shitty, and it's a sign of our terrible system! But a hell of a lot safer than someone's homecooked insulin. Falling back to that might be a desperate necessity if nothing at all was available, but given the situation it strikes me as typical techbro.
posted by tavella at 11:01 AM on September 17, 2019


does it say in here what type they're trying to make? Is it regular or one of the long-acting ones?
posted by LobsterMitten at 11:05 AM on September 17, 2019 [1 favorite]


From what I've found so far, lispro/Humalog is only different from regular insulin by the reversal of a pair of amino acids:
Insulin lispro was the first short-acting, genetically engineered insulin analog to be introduced into clinical practice. It was produced by substitution of the amino acid B28 proline by lysine and B29 lysine by proline in the B chain of the insulin molecule (Vajo and Duckworth, 2000). This change decreases the tendency of the molecule to associate to form hexamers. The consequence of this is an increased absorption rate from subcutaneous injection sites. Regular, soluble insulin naturally forms hexamers in solution, and these must dissociate in order for the insulin to be absorbed from its subcutaneous injection site. Thus, the absorption of insulin lispro is much more rapid and the plasma insulin concentration returns much more rapidly to the pre-injection level.
If you can synthesize one, I'm guessing that synthesizing the other would be very similar.

I'm not sure about the other types of rapid-acting insulin.
posted by clawsoon at 10:41 PM on September 17, 2019 [1 favorite]


In the most recent update on the Open Insulin Project website (Dec 2018) they say they’re also aiming to produce rapid acting insulin:
"...our first major milestone ― the production of insulin at lab scale ― is almost complete. Once that's done, we'll add a protocol for a rapid acting insulin to our portfolio to round it out with everything needed to effectively treat both types of diabetes with either injections or pumping. This should be much easier than the initial development we're about to complete.
posted by bitteschoen at 6:07 AM on September 18, 2019


Ok the Theranos dig was somewhat unfair, but there's a similar kind of naivete at work in the breathless reporting on both.

I do think there are huge problems with a biohacker approach to drug production. It's one area where economies of scale and state regulation actually do seem to provide substantial benefits over a syndicalist approach - when they are working.

In the peculiar case of insulin in the US, they clearly aren't working for the public good. The regulatory structure has been largely captured, and the situation seems so tenacious that I fully understand the impulse disrupt it in any possible way. But "re-engineer it from scratch" strikes me (and many far more informed people who actually work on this stuff) as a particularly unwieldy and potentially dangerous approach in this case, regardless of intentions.

although the actual lab is not an example of engineer’s disease

Accusing somebody of displaying Engineer's Disease for no better reason than that they have found something useful to do with the time . . . lazy thinking

Huh. Like the "business and economics major" who's prone to statements like: "This is my first time with anything with science and biology. I am really glad biohacking came about." Who "has to frequently check the instructions on his smartphone, because he is not too familiar with this kind of work yet" (ibid). Or the founder, whose credentials are "computer scientist with Type 1 diabetes."

Dudes kinda seem like the definition of Engineer's Disease. Just because their motivations are laudable doesn't make them any less deluded. This is still underpants gnomes thinking. They've been working on this for four years, and they still have no plan how to deal with testing the product (which also still doesn't exist) or the legal implications of their work.

I guess at least it's not as bad as the bro who was injecting himself with DIY CRISPR.

Incidentally, the FDA is supposedly changing how insulin is scheduled in an effort to address aspects of the pricing/patent disparity.
posted by aspersioncast at 7:16 AM on September 18, 2019 [4 favorites]


If you think engineer's disease is bad for insulin production, you should see how many EEs get papers published with "maybe this will work" variations on various failed approaches to blood sugar testing.
posted by clawsoon at 4:48 PM on September 18, 2019


To be fair to EEs and software developers, getting seduced by pretty ideas is pretty much a human universal. Due diligence and reality checks in the face of hope being offered are fundamentally at odds with most people's natures, not only engineers'.

For example, here's Dan Maloney bemoaning the current state of continuous glucose monitoring technology in an article from late last year. Though his Hackaday job title is "community engineer", his LinkedIn profile shows that his background is in biology and associated research, not in software. And yet his opinion piece finishes up with this:
Sadly, though, Verily just announced they’re throwing in the towel on CGM contact [lenses], stating that the biological hurdles to getting a stable, diagnostically useful reading were just too great to surmount. As we’ve seen, CGM is not easy, but I have a hard time believing that Verily bailed on this for purely technical reasons. With my cynical hat on, I’d say that the prospect of jumping through endless regulatory hoops was just too much for the company to bear, which is a crying shame (sorry) for such a seemingly breakthrough technology. But it’s tough to go up against established players that already have regulatory approvals and have deep pockets to boot.
Despite being well placed to know better, Dan simply doesn't want to let go of the idea that Verily could have made this beautiful concept work if it weren't for all those pesky regulators.

The relevant snippet from Verily's announcement is this:
Our clinical work on the glucose-sensing lens demonstrated that there was insufficient consistency in our measurements of the correlation between tear glucose and blood glucose concentrations to support the requirements of a medical device. In part, this was associated with the challenges of obtaining reliable tear glucose readings in the complex on-eye environment. For example, we found that interference from biomolecules in tears resulted in challenges in obtaining accurate glucose readings from the small quantities of glucose in the tear film. In addition, our clinical studies have demonstrated challenges in achieving the steady state conditions necessary for reliable tear glucose readings.
...which is pretty much exactly what those without gullible VCs to entice have been saying for years already. Turns out that non-invasive blood glucose level monitoring is hard! Who knew?

John Smith knew. At length, and in detail.

Fortunately, invasive testing has reached a point of being genuinely useful and practical. And even though Dexcom is still raking in the cash for the overpriced engineered-for-waste G-series CGM transmitters that Maloney rightly takes issue with, Abbott has leapfrogged Dexcom on sensor performance with their Freestyle Libre, an invasive sensor that
  • goes on the back of your upper arm, not on your belly like Dexcom's, freeing up valuable belly real estate for placement of pump infusion sites
  • keeps working for a full two weeks, not six to seven days like Dexcom's, so even though both companies offer sensors at similar prices each, using Abbott's halves your consumables cost
  • holds up to eight hours worth of sampling data taken every five minutes, which can be interrogated by Abbott's companion reader or any smartphone that can do NFC
  • can be extended to become a fully capable Bluetooth CGM by sticking on a MiaoMiao transmitter, which sells for AU$200 and has a rechargeable battery, not AU$600 with a non-replaceable one-shot battery like Dexcom's.
Little ms. flabdablet, who has Type 1, has been using the Libre+MiaoMaio combination for some while now and it's been working well for her. I'm 57, male and BMI>45, so obviously I'm a classic Type 2 risk; I got a couple of sensors and a MiaoMiao for myself and have been monitoring my own levels for a month, and I'm happy to report that I now know for sure that I don't have diabetes or even pre-diabetes.

All that said: I'm an ex-software guy so my own attitude toward the just-have-a-crack mentality behind the Open Insulin project is therefore predictably sympathetic, but boy howdy do they have a mountain of work to do if they're going to end up with something better than your average shitty meth lab in actual practice.

In defence of having a crack, safely farming microorganisms is nowhere near as close to impossibility as non-invasively measuring blood glucose. The main difficulties I can foresee are going to be regulatory - figuring out how to do it without hurting enough volunteers to get the whole project declared illegal - rather than technical, though there will undoubtedly be a fair bit of technical skill required in order to skirt Novo Nordisk's patents while still producing an end product of consistent quality.

But the world is full of enterprises that hurt consumers way worse than Open Insulin is ever going to without even a hint of official discouragement, and I'd rather see engineers in charge of this one than MBAs.
posted by flabdablet at 11:18 AM on September 19, 2019 [2 favorites]


Here's a teardown of Abbott's sensor module for those interested.
posted by flabdablet at 11:27 AM on September 19, 2019


flabdablet: In defence of having a crack, safely farming microorganisms is nowhere near as close to impossibility as non-invasively measuring blood glucose. The main difficulties I can foresee are going to be regulatory - figuring out how to do it without hurting enough volunteers to get the whole project declared illegal - rather than technical, though there will undoubtedly be a fair bit of technical skill required in order to skirt Novo Nordisk's patents while still producing an end product of consistent quality.

It was possible to purify insulin in bulk with 1920s technology, so I suppose it's not ridiculous that amateurs could do it now.
posted by clawsoon at 5:58 PM on September 19, 2019 [1 favorite]


Does anyone know why only Walmart has the $25/vial insulin? And does anybody's insurance recognize it as an out-of-pocket cost?

If I get a doctor's prescription for the $25/vial insulin and take it to the Walmart pharmacy they tell me that my insurance company insist on substituting Humalog, which rings up at around $125/vial after insurance is applied. So I use the cheaper stuff, of course, but there seems to be no way to get them to acknowledge the thousands of dollars per year I still spend on insulin as a medical expense and apply it to my deductible.
posted by XMLicious at 4:44 PM on September 21, 2019 [1 favorite]


there seems to be no way to get them to acknowledge the thousands of dollars per year I still spend on insulin as a medical expense and apply it to my deductible

It's almost as if the main purpose of the US health insurance industry is something other than providing support for the medical needs of its customers.
posted by flabdablet at 1:26 AM on September 22, 2019 [2 favorites]


There are three manufacturers making similar products who have raised prices in lockstep over 10 years and never once had a price war? The US healthcare system is a fucking mess, but this is a pretty clear case where antitrust needs to applied with a sledgehammer and execs at Lilly and Novo need to do prison time.
posted by benzenedream at 11:49 PM on September 22, 2019 [2 favorites]


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