[mrxd]

> “If you're going to die and you're being denied the medicine that can save you, would you rather break the law and live, or be a good upstanding citizen and a corpse?”

It's obviously better to risk using DIY medicine than to die, and it sounds appealing—mutual aid, neighbors helping neighbors, saving lives with free medicine! But framing it this way significantly misrepresents the issue of for-profit medicine.

People mostly aren't dying because they can't afford life-saving medicine. They are selling their homes, emptying retirement accounts and their kids college funds, going into debt and going bankrupt to pay for life-saving medicine.

These guys have given people a new option. You don't have to go into debt—you could instead choose DIY medicines of dubious quality that could have costly medical consequences for you.

This isn't quite as appealing. It isn't some radical, utopian alternative. It's just how the system works today for poor people in so many areas of life: education, housing, food, medical care, etc. The rich can afford quality, while the poor have to make hard trade-offs and take risks to stretch their dollars.

[pessimizer]

> People mostly aren't dying because they can't afford life-saving medicine.

No, people are definitely dying because they can't afford medicine. They're not taking things they need, they're cutting pills in half, they're diluting injections. When they finally die from some acute episode, what got them there is never recorded.

The amount of bullshit I have gone through to get albuterol inhalers (which cost $5 in civilized countries, but used to cost $20 in the US until a consortium of pharma lobbyists churned the patent and got the price up to $80.) I've met people in parking lots to buy out of date medicine in a crumpled brown paper bag. I guarantee that more than one person dies from this every single day, and none of them are recorded any differently than any other asthma death. Not being able to obtain this absurdly cheap to produce medicine that has been available for half a century has put me into intensive care for a week, causing years of medical debt when I was young. I wouldn't have been there if I hadn't been trying to manage without an inhaler.

Daraprim and emergency epinephrine seem like the same type of thing. To be honest, though, I prefer to Meet the Criminals Smuggling Their Own Medicine. For Albuterol, ordering inhalers from India was the real answer.

[kragen]

It's also worth mentioning that albuterol and similar inhalers used to be an exception to the prohibitions on CFCs (these inhalers an't used in large enough volume to do significant ozone damage), but due to lobbying from the companies that made them, they no longer are.

Why would a company lobby to outlaw its current product? Well, they had patents on "improved" CFC-free versions, allowing them to exclude new entrants from the market.

[kragen]

*aren't used in large enough

[chillingeffect]

That's what I call Metacapitalism.

[jdkee]

It is "evergreen" with respect to patented pharmaceuticals.

See https://en.wikipedia.org/wiki/Evergreening

[Tenoke]

Seems odd to call it that as there's little 'capitalism' in it. It's abuse of state regulations rather than market forces.

[kragen]

Agreed, regulators granting your company a monopoly is definitely the opposite of capitalism in a significant sense, even if the company does use wage-labor to produce products whose ownership rests with the owners of the means of production rather than the laborers.

[PicassoCTs]

State regulations which are exploitable due to lobbyism which is capital transferred into law generating power. Neo-Feudalism is the final form of unregulated capitalism and has always been it.

Why not just step forward into the Acceptance-Stage of Ideology-Death, instead of being caught with the intellectual trousers down half a century later by ones googling grandkids on a witch hunt?

[Nasrudith]

Any characterization of corporations as neofeudal shows a fundamental complete and utter ignorance to what feudalism actually is, in a way that only communists could manage to get so wrong.

Feudalism is a system of rule by networks of oaths and obligations, with military service as the top links. Its practicioners also historically depised merchants and traders from the top and bottom of the hierarchy. It aims for lifetime oaths.

And it is capitalism which cannot accept its ideological death, not communism? The one who proclaimed its inevitability loudly only to die in a single human lifetime, and is preoccupied with 19th century writings and works from unquestioned imperatives rather than experimentation? I think there is some major projection going on here.

[cloudfifty]

Why wouldn't a capitalist corporation choose to lobby the government to bend the rules in their favor if they think that that would give the best ROI? In what version of Capitalism would this not happen? What would remove this incentive structure?

[kragen]

In almost any version of Democracy, an authoritarian politician can choose to run for office on a platform of establishing a dictatorship; in most of them, they can even succeed. That doesn't make the would-be dictator a democrat, and it doesn't make their platform a democratic platform. Similarly, free-market incentives to lobby for government monopolies don't make monopolies capitalistic, because capitalism requires a free market, and monopolies and monopsonies are the opposite of a free market.

Marx called this sort of thing "the internal contradictions of capitalism"; he argued that capitalism was an inherently unstable structure, just as many writers have argued that democracy was inherently unstable. They might be right. But in either case, the possible fact that one system inevitably gives rise to its opposite doesn't make it the same as its opposite.

[dekhn]

Thgis is roughly my opionion. I expect companies to get right up against the legal line of what is permitted (to make more profit than their competitors, and be motivated to make the best products) while I expect government to regulate them when their actions would harm the public good.

[salmonfamine]

Only the most naive understanding of capitalism holds those two things as opposites, or mutually exclusive.

[pasquinelli]

lobbying is just utilizing accumulated capital to create favorable conditions. that capital was accumulated by a capitalist firm. that firm's competitive strategy might be aesthetically unappealing to you, but the firm exists in the first place because it can more efficiently utilize resources than any individual could.

capitalism is a way of organizing production with workers being paid a flat rate and owners keeping all additional value added by the workers in exchange. is that not how pharmaceutical companies are arranged?

[nyolfen]

of course, true capitalism has never been tried, but this is what you might call 'actually existing capitalism'

[refurb]

Exactly. This woman in Canada had to sell her house to get a drug that insurance readily pays for in the US. Criminal.

https://www.cbc.ca/news/canada/british-columbia/a-tale-of-2-...

”"It's crazy that I live in Canada, but now I'm looking at having to sell my house for coverage of my medication."

Earlier this week, McLaren walked to her local Shopper's Drug Mart and paid nearly $8,000 for a 21-day supply. On Tuesday she swallowed her first pill, worth $262.40 for just one day of treatment.”

[woofyman]

Generic albuterol inhaler is $20 using GoodRx.

[dekhn]

Yeah, I don't get the $80 comment (that's the list rate, which people don't pay normally), or the brown bags of expired inhalers.

[mrxd]

I said mostly. Some die without medicine, but I'd argue that the number is small in comparison with people who are affected economically. By focusing on deaths, you're effectively minimizing the problem.

It's similar to issues like homelessness: 0.15% of the population are on the street, but the number of people affected by housing costs is much larger.

Or police shootings of unarmed black men: 100-200 per year, which pales in comparison with millions of incarcerated black men.

We hear so much about these tiny problems is because political activists have chosen media-centric strategies to influence policy makers. The idea is to use outrage to get on the news, and then bring up the bigger issues. But in practice, policy makers just solve the outrageous problem: body cams for police; more shelters. Then the media goes away.

[kragen]

What if the DIY medicines weren't of dubious quality? What if they were higher quality than the ones that cost US$750 a dose? What if everyone had an analysis machine that could analyze the medicines, DIY or not, to find out what was in them, and the DIY stuff turned out to be purer and more precisely dosed? That's what happened with Linux versus, say, Solaris and Microsoft Windows, and it's what's happening now with programmable insulin pumps.

Also, medical consequences have to get pretty costly before they're more costly than selling your home and emptying your retirement account and your kids' college funds.

[nwiswell]

> What if everyone had an analysis machine that could analyze the medicines, DIY or not, to find out what was in them

I can fairly confidently predict this will not happen like it did for software. Chemical analysis has been around a long time and remains difficult for experts to do accurately without context, let alone for a layman. Gas chromatography, for example, requires large and expensive machinery and some idea of what the substance is composed of in order to determine the concentration of analytes.

Reagent testing is cheap, simple, and straightforward, but it is generally only capable of detecting whether or not some class of substances are present above a particular concentration. You cannot use reagent testing to determine "how pure" a medicine is, let alone whether the impurities (which there will assuredly be) are potentially harmful.

As is currently the case for illicit drugs, I imagine there will be an ecosystem to verify that A) the active ingredient is actually present and B) some limited range of problem impurities are not present, but that is a much less stringent form of quality control than pharmaceutical companies perform.

[kragen]

Clearly making it happen will require a revolution in manufacturing, which may or may not already be underway, but making it happen for software required decades of continuous revolution in semiconductors and telecommunications.

Some kinds of analysis machinery, like GC, ICP, and DSC or DTA, are probably inherently fairly large; other kinds, like FT-IR, other kinds of spectrometry, TLC, HPLC, other kinds of liquid chromatography, XRF, XRD, and NMR, can be miniaturized and mass-produced. There hasn't been much pressure to do this because bio and chem labs don't care if their spectrophotometer costs US$0.12 or US$12000 or whether it weighs 100 mg or 100 kg; they need one to get their work done, they don't need it to be portable, and they aren't going to lose it because it stays in the lab. But that doesn't mean it can't be done. Even Victorian-era-style reagent testing can be made quantitative in some cases!

[nwiswell]

> Some kinds of analysis machinery, like GC, ICP, and DSC or DTA, are probably inherently fairly large; other kinds, like FT-IR, other kinds of spectrometry, TLC, HPLC, other kinds of liquid chromatography, XRF, XRD, and NMR, can be miniaturized and mass-produced

Many of the types of analysis listed here are elemental analysis only, which are useless for trying to identify pharmaceutical analytes or determine their concentration.

Out of all of these, microfluidic liquid chromatography is the least science fiction. There's plenty of literature about it but nobody really "has it working", and the reality is that it's not likely to ever have the same capability as benchtop HPLC.

[kragen]

> Many of the types of analysis listed here are elemental analysis only, which are useless for trying to identify pharmaceutical analytes or determine their concentration.

That's mostly true, but if a pill has significant amounts of lead, arsenic, and mercury in it, you know something went wrong, and you shouldn't take it. Even XRF might be enough to allow you to safely use lead-based or arsenic-based catalysts in your synthesis.

> Out of all of these, microfluidic liquid chromatography is the least science fiction. There's plenty of literature about it but nobody really "has it working", and the reality is that it's not likely to ever have the same capability as benchtop HPLC.

Thanks! Can you think of any other plausibly miniaturizable general-purpose analysis techniques? Those are just the ones I came up with off the top of my head. I think microfluidic liquid chromatography doesn't actually have to run faster than the bear, just faster than color-changing DanceSafe test kits.

As for science fiction, https://news.ycombinator.com/item?id=29816434 talks a bit about how today's science fiction is tomorrow's old news.

[taylorportman]

Probably the 'manufacturing revolution' will be modifying yeast, plants, etc. to produce the chemical compound of interest. Everyone needn't have expensive equipment - testing can be outsourced. Such an effort would need a GPL like agreement to keep people honest, but the technology exists.

[kragen]

Conceivably, but I was a lot more enthusiastic about this possibility 35 years ago before the humans had much experience with it. It turns out DNA is a really shitty programming language for humans. Like, worse than Malbolge.

[dekhn]

Miniaturized NMR? can you explain how that would work?

[philipkglass]

They use rare earth permanent magnets and don't offer the resolution of superconducting magnet NMR, but they are much smaller and cheaper (tens of thousands of dollars, new) than superconducting units or the even older resistive electromagnet NMR units. The first one I saw was from picoSpin, which has since been acquired by Thermo Fisher Scientific. I think that there are multiple vendors now. Here's a current picoSpin unit:

https://www.thermofisher.com/order/catalog/product/912A0913

[dekhn]

An 80MHz desktop NMR in 2022 is hilarious. This owuld be great to put in a research lab or to teach students, but it's not something that could be used in a high volume, high quality pharma testing situation.

(my phd in nmr is from 20 years ago... even then it was hard to justify the expense of nmr machines in structural biology...)

[kragen]

Benchtop NMR spectrometers already exist (for decades now), and some are already cryogen-free, permitting room-temperature measurements, eliminating the dewar and cryogens which account for a lot of the mass and volume of traditional NMR spectrometers. We now have room-temperature superconductors, which might work to eliminate the bulky, heavy permanent magnets in current benchtop devices, though the pressures required may turn out to be impractical. Beyond that I can handwave at improved electronics and SQUIDs, but I don't really know.

Do you think there are some fundamental obstacles to miniaturizing NMR, and if so, what?

[fabian2k]

Benchtops are at 60-90 MHz field strengths. That is not really enough to look at more complex molecules, the bigger routine NMR spectrometers are at 400-600 MHz (and there are even larger ones, but those are not used for small molecules that much). And even then those benchtops cost something close to 100k USD, that's quite far from affordable.

The "room temperature" superconductors are not used at room temperature in these cases, they're still cooled down. And so far the only spectrometer I know of where they are used is the still extremely new 1.2 GHz Bruker. And that one is almost certainly somewhere between 10 and 20 million USD. The new superconductors are low temperature superconductors, not room temperature. And even then they still work better at lower temperatures. At best you can remove the liquid helium from the system and use liquid nitrogen only, which is an advantage but still really far from room temperature.

[dekhn]

benchtop NMR doesn't solve this problem, it's not powerful enough.

If you had improvements to NMR they would actually go first to other things than doing chemical analysis of anarchist drug batches. IE there are other industries that will buy all your machines if they existed.

The real question is why would you EVER use NMR for just about anything? It's really high cost and the total value of the data is lower than just about any other technique. It really only makes sense in research situations.

[notch656a]

I'm not arguing with what you're saying, but GC/MS can be bought for like $100 a sample and it's conceivable a system can be invented where private auditors audit the output of an unregulated pharmaceutical manufacturer in such a way that the QC assurances to the consumer are as good or better as in our current system, with much lower regulatory costs.

[nwiswell]

In the limit what you are describing is a generic drugmaker.

It's certainly possible to audit drug quality by sending it to labs, and people do that for darknet drugs all the time, but there are still problems:

1) There is no way to use ex-post analysis alone to achieve the kind of QA that pharmaceutical companies do; they have visibility into the entire manufacturing process and process control. Put another way, a sample of a drug cannot be used to verify that the process used to manufacture it is safe.

2) There is no assurance that anything you get in the future is made with the same process.

The only way I see this working, honestly, is for a rogue jurisdiction to offer safe harbor to "generic pirates". The rogue jurisdiction would offer legitimate regulatory oversight in exchange for tax revenue, and the drugs would be smuggled out of the jurisdiction for sale. To some extent this is already the case in grey markets where brand name drugs which are sold for less in other countries get arbitraged/smuggled back to high-cost markets.

[kragen]

Here's a possible approach.

Buy n = 1024 doses of your insulin or whatever, D(0, i) for i from 0 to n - 1 = 1023, homogenize each dose, and divide each one in half into half-doses called E(0, i) and F(0, i).

Mix pairs F(0, 2*i) and F(0, 2*i + 1) into 512 new doses D(1, i) for i from 0 to 511. Homogenize these new doses and divide each one in half into half-doses called E(1, i) and F(1, i).

Mix pairs F(1, 2*i) and F(1, 2*i + 1) into 256 new doses D(2, i) for i from 0 to 255.

And so on, until in step k = lg n = 10 step you mix the half-doses F(k - 1 = 9, 0) and F(9, 1) into a single dose D(k = 10, 0). Send this D(k, 0) off to the lab to be analyzed.

If the lab is equipped to detect dangerous impurities in your insulin at one-thousandth the danger level, which is reasonable for many contaminants, and the sample comes back clean, then you know that all 1024 doses were safe, though some of them may have the wrong dose. Mix the remaining 1023 doses well so that they all have the same dose and store them safely.

If not, you need to track down the contamination (or massive dilution), so in the next iteration, you send E(9, 0) and E(9, 1) to the lab for analysis. If one of them comes back safe, you know the 511 doses that were mixed into it were okay, and you can mix them well and store them safely, then repeat the process on the contaminated subtree.

Depending on your cost function (latency, shipping and handling costs, etc.) and your priors for correlation among the samples, it might be worthwhile to recurse more deeply on failure: instead of sending E(9, i) for i from 0 to 1 to the lab, you might instead send them E(6, i) for i from 0 to 15. If one out of 30 doses was randomly contaminated, for example, about 14 out of the 16 groups will be bad on average, while if it's one out of 100, then you'll have about 7 bad groups out of 16. At some point you need to give up on the recursion, too, or you'll end up testing almost all 1024 doses when they're all bad.

This of course doesn't solve the problem of future buys, just reduces it by the factor of n.

[notch656a]

I think we are seeing the same thing, a system designed to remove corruption/regulatory capture/lobbying as far as possible from the process. I'm seeing a "rogue" auditor that performs the same service, while you are seeing a rogue government. If the outcome is the same, I am fine with either. Your pointed weakness regarding auditing the manufacturing process could be incorporated into either.

[nwiswell]

> I think we are seeing the same thing, a system designed to remove corruption/regulatory capture/lobbying as far as possible from the process

Not really. It's more like a system to selectively remove intellectual property rights without destroying the financial incentive to develop drugs.

[LiquidSky]

>it's conceivable a system can be invented where private auditors audit the output of an unregulated pharmaceutical manufacturer in such a way that the QC assurances to the consumer are as good or better as in our current system, with much lower regulatory costs.

No, it's not. This is ideological libertarian nonsense. There's a reason pharma came to be regulated in the first place. All this will lead to are more injuries and death of consumers.

[notch656a]

>No, it's not. This is ideological libertarian nonsense.

If I could flag your post, I would. This is purely political nonsense and a god-like attempt to disprove something through fiat.

[rootusrootus]

Heck, even the FDA can't guarantee all generics are equivalent to the branded version (some anticonvulsants come to mind). Might be a while before this ability comes to the masses.

[R0b0t1]

A lot of machinery has been getting smaller. You can do GC/MS with a desktop device now.

[mrxd]

92% of contributors to the Linux kernel are paid by companies: https://www.suse.com/suse-defines/definition/linux-contribut...

Most major OSS projects are controlled by a few companies who pay developers to work on them. They're more like industry consortiums than DIY anarchist collectives.

[kragen]

Something can be both an industry consortium and a DIY anarchist collective, like Linux; the Linux Foundation isn't Linux. It turns out that industrial companies don't appreciate being subject to monopoly rents any more than private individuals do! The GPL is undeniably very anarchist, and it serves as a kind of constitution that keeps the companies that participate in GPL projects from controlling them. Consider, for example, Oracle and LibreOffice, MariaDB, and Jenkins, or GitHub (now Microsoft) and Git.

The solution isn't to destroy capitalism or exclude industrial companies from participation. We tried that a century ago. It went badly, because, as it turns out, capitalism is better at limiting the damage done by ambitious psychopaths than the alternative systems are; if Beria had been born in Ohio maybe he would have ended up running a soap company or a division of GE instead of mass-murdering dissidents.

Similarly, the GPL (and, to a lesser extent, non-copyleft open-source licensing) reduces the damage selfish companies can do to software projects and the people and companies that depend on them.

We need to figure out how to do the same thing to drug companies and the FDA, because they are just killing far too many people and causing far too much needless suffering today.

[beaconstudios]

It's misleading to mix up anarchism and marxism-leninism. While both are anti capitalist, ML is the one where you're just replacing one hierarchy (economic power) with another (party membership). Anarchism is fundamentally against coercive hierarchy.

[kragen]

Anarchism is indeed fundamentally against coercive hierarchy, yes, and I apologize for not being clearer about that. That said, Emma Goldman and many other anarchists were delighted to be deported to Soviet Russia until their famous disillusionment; historically speaking, the mainstream of anarchism considered state communism more friend than enemy, until they saw how it worked out in practice. And my own experiences with nominally anti-hierarchical organizations have not given me great faith.

[beaconstudios]

I think a lot of people had a lot of hope in the Soviet Union, especially when there were actual soviet councils involved. It didn't take long to devolve into a regular dictatorship. After all the state was supposed to be a vanguard for the implementation of socialism but power begets power and in the end it existed to serve itself.

I think that's the main reason that most sane leftists* are some flavour of anarchist these days.

* not including social democrats/other liberals in the "leftist" bracket.

[notch656a]

Capitalism isn't incompatible with anarchism unless you're speaking with leftist.

[kragen]

Anarchism is leftist.

[notch656a]

I consider myself anarchist in the sense I do not believe in the legitimacy of government. I do not have any leftist view whatsoever, but I think people should retain ownership of their property except through consensual trade. Does that mean I'm not an anarchist, or does that mean I'm a leftist?

[LiquidSky]

>What if everyone had an analysis machine that could analyze the medicines

Because, as a post below notes, this is a pure fantasy. At this point you're proposing actual magic.

>Linux versus, say, Solaris and Microsoft Windows

Your choice of operating system isn't going to severely harm or kill you. "Move fast and break things" is a problem when the "things" are people.

>medical consequences have to get pretty costly before they're more costly than selling your home and emptying your retirement account and your kids' college funds.

Welcome to the reality of healthcare in the US for the uninsured (and often times for the poorly-insured).

[notch656a]

Meh it's the classic black market vs white market debate, where here the white market is a huge oligopoly with insane markups to pay off lobbyists / regulator / advertisers / the rich people who own the pharma companies. Sometimes the black market is even more expensive but in DIY it often isn't.

If it were me I'd just make it all in one go, hopefully enough to be set for life, huge pile of it whatever drug I need to stay alive. Create a homogeneous mixture, GC/MS the mixture for purity and then package it for long term storage.

[LiquidSky]

>Meh it's the classic black market vs white market debate,

No, it's classic libertarian fantasy bullshit. Medicines aren't toys, and we know exactly what happens when they're unregulated.

[notch656a]

I wasn't aware that analytical instruments could measure your economic or political ideology.

[popcube]

some university will buy it first! actually this sounds like good, but this so difficult.

if someone glad to try some secret drug, maybe they can killed by error one...

[jdavis703]

> People mostly aren't dying because they can't afford life-saving medicine.

I don’t where you live. But in California there are clearly destitute people on the street in need of simple medical interventions like antibiotics.

For whatever reason* they aren’t able to get medical help — and I’m not just meaning people in mental crisis and drug addiction. There are seemingly “regular” people suffering from what should be 19th century style deaths.

* I’ve noticed that EMTs are very cynical about helping poor looking people. I’m sure the classism extends to getting care, even when hospitals are legally required to provide immediate help without taking finances in to account.

[hammock]

Affordability is not the only reason people are being denied medicine. Many people have wanted, e.g. ivermectin, monoclonal antibodies, etc; and even gone to court to fight to get them, not because of the cost but because doctors, pharmacies and/or government bodies refuse to provide.

[kragen]

The -mabs are often denied because they really are expensive to make. Ivermectin is super cheap and quite safe in the usual doses; in the case of covid, denying it to people isn't directly causing any harm, but also very little good, if any.

[hammock]

>The -mabs are often denied because they really are expensive to make.

Source? According to the HHS via Washington Post[1], many doses of monoclonal antibodies have already been made, but only 20% of those distributed have been used, with 80% sitting on a shelf. The article suggests a few reasons for the lack of use, but it does not mention cost to make them.

[1]https://archive.fo/IHK4J