Finally, a cheap, DIY pharmacy for the masses
July 26, 2018 11:30 PM   Subscribe

An antidote to Shkreli-induced heart-rage: “The rhetoric that is espoused by people who defend intellectual property law is that this is theft. If you accept that axiomatically, then by the same logic when you withhold access to lifesaving medication that's murder. From a moral standpoint it's an imperative to enact theft to prevent murder.” So says Michael Laufer, the ringleader of the Four Thieves Vinegar Collective,

which is "a volunteer network of anarchists and hackers developing DIY medical technologies," hard at work reverse-engineering prescription drugs (focusing on those which are obscenely expensive or unavailable) and homemade lab reactors, which can synthesize said drugs from readily available reagents. Their end-goal? share this knowledge with the world for free. (What's with the name, though?)
posted by cavedweller (28 comments total) 34 users marked this as a favorite
More? Check out Laufer's presentation at last week's Hackers Of Planet Earth conference: How to Torrent a Pharmaceutical Drug (Livestream, 54min)
posted by cavedweller at 11:39 PM on July 26, 2018 [2 favorites]

From a moral standpoint it's an imperative to enact theft to prevent murder.

Depends whose moral standpoint it is. Kant wouldn't even let us lie to prevent murder.
posted by Panthalassa at 1:14 AM on July 27, 2018 [4 favorites]

Yeah, well, he's dead.
posted by saturday_morning at 3:30 AM on July 27, 2018 [45 favorites]

Came in here to make fun of my fave History Boyfriend, Herr Kant. But in his defense, if someone is violating the Categorical Imperative so profoundly and blatantly, they mustn't be thinking clearly at all! And thus stealing from them may, nay must, be guilt-inducing--yet, it doesn't actually violate the moral law. Killers lack access to a good will, so it's like lying to a child. Rude, sure. Bad habit, ok. Morally necessary, though, to correct their mistake.
posted by zinful at 3:41 AM on July 27, 2018 [2 favorites]

ALSO this is SO COOL and exactly what I had in mind when I wished for futuristic scifi technopia as a more innocent zinful. Hackers distributing electronic medication to save lives and end users building garage synthesizer labs. it feels like a tiny wonderful piece of 1998's hopes for the internet flickered back on or something.
posted by zinful at 3:46 AM on July 27, 2018 [22 favorites]

a volunteer network of anarchists and hackers developing DIY medical technologies, hard at work reverse-engineering prescription drugs ... and homemade lab reactors, which can synthesize said drugs from readily available reagents.

What could possibly go wrong?
posted by NotMyselfRightNow at 3:53 AM on July 27, 2018 [7 favorites]

I don't know, NotMyself, but I've preordered the Gibson novel from Amazon.
posted by rokusan at 4:22 AM on July 27, 2018 [7 favorites]

His colleague, Harold DeMonaco, a visiting scientist at MIT, agreed. DeMonaco suggested that a more rational solution to the problems addressed would be for patients to work with compounding pharmacies. Compounding pharmacies prepare personalized medicine for their customers and DeMonaco said they able to synthesize the same drugs Four Thieves is producing at low costs, but with “appropriate safeguards.”

The New England Compounding Center killed 76 people right down the road from you in 2012, Harold.

I used to work in a veterinary pharmacy where we did a lot of compounding, including making drug-laced gummi worms to help chickens take their meds, and while it is complicated and can be dangerous if done badly - both for the patient and the pharmacist - it can certainly be done more cheaply than it is currently being done by the pharmaceutical companies. The same pharmaceutical companies that left us without stock of several important drugs for chronic conditions because they allegedly got some oxycontin in bottles of OTC pain reliever.
posted by Rock Steady at 4:34 AM on July 27, 2018 [13 favorites]

This deep-dive article on true and false reasons why drugs cost so much should be required reading.

All drugs eventually go generic, and generics usually don't cost very much. When they do it's a regulatory failure, and the regulations need to be fixed (i.e. you will need politicians who believe government has a valid oversight and regulatory role). Generic drug companies can and do sell safe drugs very cheaply.

If you want faster development of new drugs, or for new drugs to be affordable right away (as opposed to when they go off patent and open to generics) then you've got to get around:
- the high barrier presented by extremely difficult science
- the need for high confidence in outcomes (to avoid doing more harm than good)
- and the need for high up-front capital investment with a long timeline to pay off.
As far as I can tell, this would require a gigantic change in the industry driven by governments (very much plural) stepping in to front the money.
posted by Humanzee at 6:06 AM on July 27, 2018 [7 favorites]

Yes, the pharmaceutical companies want you to believe that they charge so much for drugs because it's so expensive for them to develop them. In reality, Taxpayers — not Big Pharma — have funded the research behind every new drug since 2010

In the rest of the world, government regulation in the form of pharmaceutical price controls make it possible for ordinary people to purchase medications. Because we don't have those rules here, the companies charge as much as they think they can get away with, hugely profiting off of Americans' need to stay alive, and then they claim poverty.
posted by hydropsyche at 6:24 AM on July 27, 2018 [31 favorites]

I'm not totally enthused about the "let's DIY some meds" turn, but I've noticed that left hacker anarchists tend to be good at this sort of fiddly thing. (As distinct from the tech bro "I'm going to modify my body to be Moar Alpha by injecting this random thing at a table my filthy warehouse space" variety.)

I'd prefer some kind of systematized drug production with inspections and so on, but I am not as deeply unconfident in this kind of thing as I might be.

I mean, it's not that I have experience with, specifically, volunteer networks of anarchist hackers developing ways to make meds, but I do have some experience with volunteer networks of anarchist hackers developing ways to make difficult, fiddly small things that need to be to a very high standard.

My experience of anarchist networks is that anything which can be done by very small groups which have shared goals and done with relatively little outside interaction can be done to a very high standard. The perverse result is that people who absolutely can't manage a dish-washing roster at the community center can none the less produce, eg, a pretty sophisticated small machine.

The trouble with all this small production and DIY-off-the-internet stuff is that it relies on everyone having a lot of community knowledge which can be difficult to access. Like, I have a couple of friends who I would trust 100% to access this kind of stuff, assess it, produce meds and make sure they were good (because I've seen them produce small difficult things that have to be exactly right based on internet instructions before), but I also know people where I would not trust them to do this right.

The whole point of standardization is that you don't have to know that this one person is very reliable and their instructions can be trusted, that person is extremely skilled and can make almost anything but this other person is flaky and not-careful.

So I guess I'd say "qualified yay but difficult to scale"?
posted by Frowner at 6:43 AM on July 27, 2018 [8 favorites]

The absolute simplest and easiest way to drive down drug prices (especially generics) in the US is to let us buy overseas. The FDA cGMP regulations make it hard to bring in competition and it's not like European drugs are unsafe. It would also help fix the crazy amount of hospital drug shortages we've been seeing for the last decade. This would help too, of course.
posted by Easy problem of consciousness at 6:46 AM on July 27, 2018

All drugs eventually go generic, and generics usually don't cost very much.


Yes, I do suppose it is a regulatory failure, but it also does seem to be the way things are going. I expect at best a slap on the wrist and companies taking anything as a lesson to be better at hiding their misdeeds.

Then you have problems with generics.

So I’m not really sure this diy route is necessarily going to be worse. Different problems, but also theoretically more control. Someone making these meds out of necessity doesn’t have the same motivation as a generic company that is cutting corners and faking QC test results.
posted by [insert clever name here] at 7:23 AM on July 27, 2018 [2 favorites]

To those who are joking that this sounds like a sci-fi novel -- it's the premise of the Nebula-nominated Autonomous: A Novel, by Annalee Newitz. Appropriately enough, the cover blurb features Neal Stephenson comparing it to Gibson's Neuromancer. Some if it is pretty out there (the B plot features an erotic relationship between the man hunting the main character and his bot. They are brought closer together by the extreme violence the bot is capable of inflicting). That said, I really enjoyed it.
posted by natabat at 8:09 AM on July 27, 2018 [2 favorites]

as someone who is broke as fuck right now and can't even afford his medications, well, I want in on this. I need the stuff for my wife, and for me (although I'm pretty sure synthesizing the insulin I need isn't possible yet).

I'm very tired of the fighting to get the medications I need.
posted by mephron at 8:16 AM on July 27, 2018 [5 favorites]

I'm very glad Michael Laufler has stopped spelling his name with a silent x. He's a brilliant man, and deserves to be taken seriously.
posted by Jon_Evil at 8:22 AM on July 27, 2018

Most of the complaints about generics fall into two buckets. One is overpriced generics due to law-breaking or loopholes in the law. The other being low quality due to lack of regulation of fly-by-night or foreign companies. I don't know how you'd imagine that moving to a garage laboratory model of drug production would solve the second problem, it seems like a step in exactly the wrong direction. As for the first, the solution is political reps who believe in regulation. The problem with generics that are not identical to brand name is different, and indeed a problem. But your garage-based biohacker is going to have an even tougher time than a generic pharmaceutical company.

As someone who has been supported by NIH for a large proportion of my career (and may be now, exact money flow is opaque to me at the nonprofit I work at), I agree that the NIH is vital to developing drugs. But its currently role is to support basic academic research, producing the basic insights behind disease and drug mechanism, not drug discovery itself. From the study linked in the article:
This report shows that NIH funding contributed to published research associated with every one of the 210 new drugs approved by the Food and Drug Administration from 2010–2016. Collectively, this research involved >200,000 years of grant funding totaling more than $100 billion. The analysis shows that >90% of this funding represents basic research related to the biological targets for drug action rather than the drugs themselves. The role of NIH funding thus complements industry research and development, which focuses predominantly on applied research. This work underscores the breath and significance of public investment in the development of new therapeutics and the risk that reduced research funding would slow the pipeline for treating morbid disease.

I was unable to find that pew trusts figure to understand its provenance, but I don't buy it. The money amounts are just ludicrously low. The pipeline to go from potential target to drug in clinic is known: it's long and almost all candidate drugs fail. The expenses are cataloged. I think the best way forward is for the NIH (and European partners) to expand into directly funding this process and take some of the need for profit out. This would make drug discovery cheaper, but not cheap, and distribute the cost more equitably.
posted by Humanzee at 8:55 AM on July 27, 2018

Yes, the pharmaceutical companies want you to believe that they charge so much for drugs because it's so expensive for them to develop them. In reality, Taxpayers — not Big Pharma — have funded the research behind every new drug since 2010

I'm an academic scientist who works adjacent to drug discovery. Dozens of my colleagues do it for a living. I've met discoverers of drugs that have saved more lives and ended more pain than any social justice movement you care to name.

This article is is RANK bullshit.

The pie chart in that slide suggests that pharma spent $130m on clinical trials in 2012!

A single US phase 1 trial costs 1-5mil
A single US phase 2 trial costs 5-20mil
A single US phase 3 trial costs 10-50mil

And this is old data.

"The lords of the current paradigm fear rigorous and transparent clinical trials almost as much as paying for their own R&D. "

Do some reading
and some more

Taxpayers have not funded the thousands of phase I-III trials that costs billions of dollars though
posted by lalochezia at 9:00 AM on July 27, 2018 [10 favorites]

I've met discoverers of drugs that have saved more lives and ended more pain than any social justice movement you care to name.

How about the social justice movement that will make all these drugs free.
posted by Space Coyote at 9:07 AM on July 27, 2018 [9 favorites]

Sign me up for Luxury automated gay space communism. Sign me up for socialized drug discovery like the the welcome trust. Sign me up for diverting money from the militaries of the world to human health.

Until then, we're imbedded in capitalism, and safe, effective drugs costs billions to discover, develop and test.

Big pharma is rapacious, but these are real, unavoidable costs - tens of thousands of person-years of work per drug - because developing safe, efficacious drugs to treat maladies is one of the most difficult technical enterprises humankind has ever undertook - and these costs must be borne by someone.
posted by lalochezia at 9:27 AM on July 27, 2018 [5 favorites]

Nice try, but I imagine Big Pharma with their regulatory and legislative sock puppets will squash this like a bug. Legally, of course...
posted by jim in austin at 9:30 AM on July 27, 2018

Charging for insulin feels like a war crime.
posted by mecran01 at 9:38 AM on July 27, 2018 [2 favorites]

I'm for this. Yes I know you are shocked that mefi's own favorite tory/conservative right makes might makes right, what have you, is for anarchist endeavors but there you are.

Also, if they can lie, so can I.
Look, I'm a poit!
posted by evilDoug at 9:56 AM on July 27, 2018

My 5 year old’s specialty medication has a “retail price” of $37,000 per month. When it was going through the FDA approval process, my brother ran the studies by his epidemiology professors. One said, “Chemically it is very simple. You could cook this up in your garage.” I am quite relieved to know now that there are anarchist hackers out there to help.
posted by Maarika at 12:40 PM on July 27, 2018 [7 favorites]

The "price" of manufacture once discovery, optimization, screening, and phase 1-3 trials have been conducted is less than 5% of the cost of bringing a drug to market - excluding profit and marketing
posted by lalochezia at 1:41 PM on July 27, 2018 [4 favorites]

And then sometimes those Big Pharma companies use their powers strictly for good, such as donating tens of thousands of doses of a vaccine against one of the most horrific infectious diseases in the world, contributing to an astonishingly rapid and successful containment of an outbreak.
posted by Sublimity at 8:45 PM on July 27, 2018 [2 favorites]

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