[HN Gopher] Meet the Anarchists Making Their Own Medicine (2018)
       ___________________________________________________________________
        
       Meet the Anarchists Making Their Own Medicine (2018)
        
       Author : mvanaltvorst
       Score  : 81 points
       Date   : 2022-01-05 10:44 UTC (12 hours ago)
        
 (HTM) web link (www.vice.com)
 (TXT) w3m dump (www.vice.com)
        
       | nynx wrote:
       | I hope we can eventually have self-contained machines that can
       | synthesize many different types of medications. By certifying the
       | machines or testing them thoroughly, you can lessen the worry
       | that people will synthesize the drugs wrong.
       | 
       | I think this is almost possible for a large range of simple,
       | small-molecule drugs.
        
         | aijeq wrote:
         | The point of this exercise is that the regulatory capture
         | effectively prevents life saving treatments from reaching the
         | people who need them.
         | 
         | For example, better quality insulin is far more expensive
         | because there's tremendous capture not only in the insulin
         | market but the bioreactors required to make the insulin from
         | bacteria. The process isn't insanely complicated, chemistry-
         | wise, but the fact that only a few can make it and its MUCH
         | better means they can charge more.
         | 
         | Another example is one-off drugs for rare but potentially
         | curable conditions. They are often so expensive that they're
         | pulled from the market because 1% of 1% of the population needs
         | them and you can't use that to drive revenue.
         | 
         | 3D printing took off precisely because of the LACK of
         | regulatory capture. Imagine you had an FDA synthesizer that
         | could make something common and simple like blood pressure
         | medication for fractional cents on the dollar. You wouldn't be
         | able to find the plans for this like you could for a 3D printed
         | gun, for example, because the technology requires actual
         | expertise to use. So you'd likely be left buying it from some
         | biotech firm who will happily charge a price equivalent to a
         | lifetime supply of all the drugs it can produce. You once again
         | reach the affordability problem. Not because the technology is
         | that far out of reach or so esoteric, but to be able to even
         | get the device into the people's homes who need it you would
         | need to find centuries of deeply entrenched and well
         | capitalized special interests. Pharma would rather you die from
         | something preventable than leave a single penny uncollected.
         | Normally this would be considered hyperbole but in this case
         | it's absolutely, verifiably true.
         | 
         | You can be certain if any DIY "3d molecule printer" ever took
         | off there would be heavily armed alphabet soup boys at the DEA
         | ready to kill whoever to keep the interests of big pharma in
         | power.
        
       | tehjoker wrote:
       | This is pretty interesting, but skimming the article I didn't see
       | any mention of lab testing the purity and quantity of drugs
       | produced. There's a lot of fiery talk but how do we know that the
       | results are usable?
        
         | netizen-936824 wrote:
         | This is a very important step in the production of medications.
         | We need to know that nothing went wrong with the synthesis and
         | we aren't ingesting toxic and potentially fatal byproducts.
         | Dosage can also be wrong if measuring an impure compound.
        
       | Xenoamorphous wrote:
       | Due to the pandemic I've often thought about what the ideal model
       | for vaccines and other drugs would be. I understand that there's
       | enormous costs for pharma companies to bring a new drug to the
       | market, and I guess a lot of new drug prospects end up not going
       | anywhere, but it's hard to swallow that there's drugs out there
       | that are cheap to manufacture and are life saving (or life
       | changing) for people that need them yet some/many of them can't
       | afford them.
       | 
       | What's the best way to fix this? Direct government funding?
       | Indirect one via subsidising the drugs for those who need it? Im
        
       | 2OEH8eoCRo0 wrote:
       | > After a few minutes of gloating about pharma bro Martin Shkreli
       | "rotting at Fort Dix" for raising the price of Daraprim, a
       | lifesaving HIV medicine, from $13 to $750, Laufer grew serious.
       | "It's been two years, but despite everything that's happened, the
       | price of Daraprim hasn't changed," he said.
       | 
       | Shkreli went to jail for securities fraud- not raising the price
       | of a drug. I think Shkreli was a convenient scapegoat for the
       | pharmaceutical industry though. All the time and energy people
       | spent angry at Shkreli was time spent not directing their anger
       | at the industry that allowed it.
        
         | trhway wrote:
         | while all that drama on the surface, the industry had coopted
         | government's War on Drugs and pushed opiates (great thing when
         | used as needed) into the opioid epidemics, and now they coopted
         | government's War on Covid and has been pushing billions of
         | doses of the vaccines (great thing when it works) which clearly
         | fail to control the spread (and thus these vaccines have only
         | limited use, i.e. only for the people who really need it (like
         | high risk groups, etc.) - the situation pretty similar to
         | opioids. And if one looks at those 3rd, 4th, ... boosters -
         | sales tactic wise it looks eerily similar to the jacking up the
         | "12hr" opioid dose approach as it simultaneously increases
         | sales and creates addiction). I wonder if several years down
         | the road we'll see vaccine trials/settlements similar to the
         | opioids ones.
        
           | jjoonathan wrote:
           | Pro-opiate _and_ anti-vax? Niiiice!
        
             | kragen wrote:
             | I'd like to be able to discuss ideas on their merits
             | instead of being confronted with factional applause lights
             | like "anti-vax".
        
               | jjoonathan wrote:
               | Arguments like "clearly fail to control the spread" are
               | low effort Gish Gallops that need to be treated as such.
               | 
               | Publicly slugging it out in the weeds grants an optical
               | stalemate to an argument that deserves to lose. Do this a
               | million times in a row and you can launch an entire
               | contrarian movement off vapors -- which is exactly what
               | we have seen.
        
             | hhpindia wrote:
        
           | snakeboy wrote:
           | Seems like they're pretty different cases, given how life-
           | destroying opioid addiction is.
           | 
           | Pushing vaccines is mostly just profiting by adding another
           | layer of bureaucracy and annoyance into daily life.
           | 
           | I'm not really more angry at pfizer than I am Booz Allen for
           | wasting however many billions of my tax dollars.
        
             | trhway wrote:
             | >Seems like they're pretty different cases, given how life-
             | destroying opioid addiction is.
             | 
             | Pfizer/Booz Allen waste of billions of tax dollars do come
             | with resulting indirect damage to people health and lives
             | who could have been helped otherwise. And for direct damage
             | - I think jury is still out on that one. For example, in UK
             | according to the link they already count 0.3M of heart
             | issues which they officially pinned on pandemic stress
             | 
             | https://www.standard.co.uk/news/health/post-pandemic-
             | stress-...
             | 
             | with more expected to come:
             | 
             | "Mark Rayner, a former senior NHS psychological therapist
             | and founder of EASE Wellbeing CIC, said that as many as
             | three million people in Britain are already suffering from
             | PPSD, thanks to stress and anxiety caused by the effects of
             | Covid-19.
             | 
             | He fears this could result in a dramatic rise in physical
             | health issues, such as coronary heart failure, if cases are
             | not detected or treated early."
             | 
             | Pinning on pandemic stress means they couldn't pin it on
             | covid - either it is non-infected people or timing isn't
             | correlated enough. Now, simple politically correct choice -
             | stress or mRNA vaccines known for causing heart issues?
        
       | GuB-42 wrote:
       | I remember a few years ago, someone made a suggestion, that,
       | because a lot of these overpriced drugs are paid by insurance
       | companies.
       | 
       | So why don't insurance companies contract an independent lab to
       | make their own medicine instead of paying ridiculously high
       | prices for out-of-patent medicine? Of course, it would be a
       | proper lab, with certifications and quality control, not some
       | guy's basement, so it would be expensive, but on the other hand,
       | the alternative is also way too expensive.
        
       | mrxd wrote:
       | > "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 wrote:
         | > 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 wrote:
           | 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.
        
             | chillingeffect wrote:
             | That's what I call Metacapitalism.
        
         | kragen wrote:
         | 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.
        
           | mrxd wrote:
           | 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 wrote:
             | 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.
        
           | nwiswell wrote:
           | > 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 wrote:
             | 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 wrote:
               | > 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.
        
               | dekhn wrote:
               | Miniaturized NMR? can you explain how that would work?
        
               | kragen wrote:
               | 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 wrote:
               | Benchtops are at 60-90 MHz field strengths. That is
               | barely 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 wrote:
               | 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.
        
               | philipkglass wrote:
               | 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 magnet 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/912A09
               | 13
        
               | dekhn wrote:
               | 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...)
        
             | notch656a wrote:
             | 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 wrote:
               | 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.
        
               | notch656a wrote:
               | 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 wrote:
               | > 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.
        
               | notch656a wrote:
               | Oh. So you don't want a system that removes corruption,
               | regulatory capture, and lobbying as far as possible? I
               | don't want to destroy the financial incentive either, I
               | think it's great people that bring wanted goods to market
               | profit from it.
               | 
               | IP is an interesting point, although I'm not convinced
               | that generating the IP is more than a small fraction of
               | the cost of a drug. An aggregate I saw from 2011-2018
               | puts Research at only 17% of revenue, and only some
               | proportion of that is geared towards generating IP. That
               | is to say, with all else removed you could generate an IP
               | only company for 17% the cost of drug sales.
        
               | LiquidSky wrote:
               | >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.
        
               | [deleted]
        
               | notch656a wrote:
               | >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 wrote:
             | 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.
        
           | LiquidSky wrote:
           | >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 wrote:
             | 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 wrote:
               | >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 wrote:
               | I wasn't aware that analytical instruments could measure
               | your economic or political ideology.
        
         | hammock wrote:
         | 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.
        
       | elchief wrote:
       | this will be useful in 20 years when society has collapsed, but
       | you want to survive
        
       | petermcneeley wrote:
       | Not an Anachist but I wonder how much of the danger here is due
       | to the law. Ideally they would simply be selling the epipencils
       | and doing testing etc but there is no way they would be able to
       | do this. So instead the best they can do is create DIY kits.
       | 
       | I wonder how far they can legally push the DIY kit. Can they ship
       | you supplies with the kit? Can they ship you expresso-like packs
       | for your DIY machine?
        
         | mastazi wrote:
         | This reminds me of vaping in Australia: since vaping liquids
         | containing nicotine are illegal, people make their own liquid
         | by mixing nicotine-free vaping liquids (which are legal) with
         | nicotine extracted from products such as Nicorette (which are
         | also legal) - unfortunately some just go back to cigarettes
         | rather than going through all that trouble.
         | 
         | Luckily, I didn't go back to the stinkies - I never smoked
         | again (I also quit vaping after a while, quitting vaping is not
         | hard because it's not nearly as addictive as ciggies are).
        
       | trutannus wrote:
       | My first thought was how dangerous this is. Then after thinking
       | some more, I was left questioning how a developed country can
       | mess up so badly that some people feel this is their only option.
        
         | hirundo wrote:
         | > I was left questioning how a developed country can mess up so
         | badly that some people feel this is their only option.
         | 
         | Regulatory capture.
        
           | trutannus wrote:
           | That and market failure.
        
             | dgb23 wrote:
             | I'm not sure if life saving medicine should or even can be
             | understood through economic equilibrium. This is ultimately
             | a question of ethics, politics and sheer survival. This
             | isn't a market in the first place and it doesn't help that
             | we pretend it is.
        
         | netizen-936824 wrote:
         | If you send your compounds off for proper testing it shouldn't
         | be that dangerous, but that will increase the cost a few 100%
         | most likely
         | 
         | Testing usually doesn't come cheap, but you also might be able
         | to drop by a well equipped Chem department at a university for
         | testing as well
        
           | tablespoon wrote:
           | > If you send your compounds off for proper testing it
           | shouldn't be that dangerous, but that will increase the cost
           | a few 100% most likely
           | 
           | > Testing usually doesn't come cheap, but you also might be
           | able to drop by a well equipped Chem department at a
           | university for testing as well
           | 
           | I don't think it's that easy. Even if you successfully
           | synthesize the right chemical, you also have to get dosage
           | and delivery right (consistently!).
           | 
           | From the OP:
           | 
           | > In response, Four Thieves published the instructions for a
           | DIY epipen online that can be made for $30 in off-the-shelf
           | parts and reloaded for $3.
           | 
           | If I had to depend on an epipen to save my life, I don't
           | think I'd want a DIY version that may not work when I need it
           | (e.g. mechanism fails, storage stability issues, dosage
           | issues, etc.). Sure I guess it's better than nothing, but
           | it's also proof this clearly isn't the solution to the $600
           | epipen problem.
           | 
           | > Shkreli drove the price of the lifesaving HIV medicine
           | Daraprim sells up to $750 per pill. So Four Thieves developed
           | an open source portable chemistry lab that allows anyone to
           | manufacture their own Daraprim for just 25 cents apiece.
           | 
           | The article calls Daraprim and "HIV medicine" throughout, but
           | isn't that misleading? I thought it was an anti-parasitic
           | (that may be used by HIV patients to treat secondary
           | infections).
        
             | wizzwizz4 wrote:
             | > _If I had to depend on an epipen to save my life, I don
             | 't think I'd want a DIY version that may not work when I
             | need it. Sure I guess it's better than nothing, but it's
             | also proof this clearly isn't the solution to the $600
             | epipen problem._
             | 
             | DIY versions are normally more expensive than mass-produced
             | equivalents. So either this DIY version has _atrocious_
             | quality, or $600 is far too expensive. (Judging by the
             | prices in normal countries, $600 is far too expensive!)
        
               | tablespoon wrote:
               | > DIY versions are normally more expensive than mass-
               | produced equivalents. So either this DIY version has
               | atrocious quality, or $600 is far too expensive. (Judging
               | by the prices in normal countries, $600 is far too
               | expensive!)
               | 
               | Yeah, the answer is $600 is far too expensive.
               | 
               | IMHO the answer is some kind of regulation (e.g. limiting
               | the profit margin on generics or even drugs more
               | generally), or some kind of boutique government-owned
               | generic maker tasked with being a manufacturer of last
               | resort and selling generics at _its cost_ (which should
               | be higher than a non-price-gouging private company, so it
               | works to put a price-ceiling on those companies and also
               | acts as insurance against unavailability).
        
               | ur-whale wrote:
               | > IMHO the answer is some kind of regulation
               | 
               | IMHO, the solution is actually _less_ regulation.
               | 
               | If any company could enter that market with being sued
               | into the ground, you'd get top notch a quality product
               | for a fraction of the price before you could finish
               | spelling epinephrine.
        
               | tablespoon wrote:
               | > IMHO, the solution is actually less regulation.
               | 
               | > If any company could enter that market with being sued
               | into the ground, you'd get top notch a quality product
               | for a fraction of the price before you could finish
               | spelling epinephrine.
               | 
               | I doubt it. IIRC, EpiPens are off-patent, and the only
               | thing holding back competition is the need to demonstrate
               | the competing product is safe, reliable, and equivalent.
               | I even believe a competitor product was withdrawn from
               | the market because it was delivering an unreliable
               | dosage.
               | 
               | So if you remove the regulations, you'll probably get a
               | flood of corner-cutting crap that's dangerous. That's
               | likely especially true for an "emergency use" item like
               | an EpiPen, which literally sits on a shelf unused unless
               | there's an emergency (leaving a big opportunity to sell
               | defective items undetected by consumers).
        
               | wizzwizz4 wrote:
               | The computer market is not particularly regulated, yet we
               | still have international big tech monopolies stifling
               | competition. I think the US simultaneously needs:
               | 
               | * less regulation, to reduce barriers-to-entry
               | 
               | * more regulation, to allow competition
               | 
               | Normally, I'd be concerned about reduced regulations
               | having safety implications, but the existing situation is
               | _already_ unsafe.
        
               | waterhouse wrote:
               | Patents are a big part of how the stifling is done.
               | Getting rid of them, or at least cutting their term by a
               | factor of 3-4, would help a great deal.
        
         | waterhouse wrote:
         | Also, the article mentions an MIT professor's safety concerns,
         | but, upon reflection, given the conditions some of these drugs
         | are meant to treat, the error rate would have to be _very_ high
         | to make it worse than no treatment.
        
       | dekhn wrote:
       | I know a bunch about pharma. The folks who are doing this and
       | saying it's cheaper are often completely neglecting costs that
       | are borne by corporations: the initial R&D, but also the immense
       | amount of quality control and regulatory compliance.
       | 
       | I've also talked to the biohackers. S ome of them are smart,
       | careful, and just get stuff done in the lab. Then there are the
       | attention hogs who inject themselves on youtube (typically with
       | no ability to know if they did anything at all), many of whom,
       | after a few years, realize that what they are doing is naive, and
       | that there was actually a reason for the entire establishment
       | around pharma.
        
         | kragen wrote:
         | R&D and quality control provides benefits to patients, and it
         | is critically important to figure out how to reduce the cost of
         | R&D and quality control so we can do a lot more of them. That's
         | what Four Thieves Vinegar and other biohackers are doing.
         | 
         | Regulatory compliance doesn't provide benefits to patients;
         | it's a deadweight loss. As you are presumably aware, to a
         | significant extent, the reason that regulatory compliance is so
         | costly is that, being costly protects established drug
         | companies from competition.
         | 
         | Quality control and initial R&D have nothing to do with why Epi
         | Pens, insulin, or Daraprim are absurdly overpriced in the US.
         | That's purely monopoly rent extraction.
        
           | dekhn wrote:
           | Nothing I said above disagrees with the fact that many pharma
           | are indeed doing what you call "monopoly rent extraction". I
           | think all of those drugs are overpriced for non-economic
           | reasons.
           | 
           | Regulatory compliance, for example, with the FDA approval
           | process, isn't a deadweight loss; it's a process that reduces
           | the risk a dangerous drug will be given to the public. It's
           | mostly costly due to incompetence and bureaucracy, not
           | because pharma is evilly plotting to continue to be the only
           | people who can get stuff through the FDA.
           | 
           | If somebody comes up with magical ways to reduce the costs of
           | R&D and QC in pharma, I'm all for it. Just be aware: I've
           | worked around pharma for decades and it will only get more
           | expensive to do any of this. Nobody is going to come in and
           | magically disrupt the business with a new technology pharma
           | didn't think of yet.
        
             | kragen wrote:
             | What reduces the risk that a drug will be dangerous is
             | testing, quality control, replication, and transparency.
             | Regulatory compliance is, at best, a means to those ends,
             | not an end in itself. At worst, and far too often, it's a
             | major obstacle to them.
             | 
             | People don't have to be evilly plotting when their
             | incentives are set up to empower only people who do evil
             | things. Don't forget that, in the US, we're talking about
             | the same regulatory regime that rejected magainin, hasn't
             | brought a new class of antibiotics to market in half a
             | century, has outlawed the flavored vape liquids that help
             | people quit smoking, won't allow you to buy a blood sugar
             | meter until _after_ you have diabetes, prohibited covid
             | testing at the beginning of the pandemic, delayed covid
             | vaccination until five or six months after China was doing
             | mass vaccination, and routinely cuts off opiate addicts
             | cold turkey. It 's a Kafkaesque farce, as you know very
             | well, and quite possibly the primary cause of death in the
             | US today.
        
               | dekhn wrote:
               | So, uh, how are we going to ensure that all that testing,
               | QC, and transparency occurs... without some sort of
               | regulatory agency that enforces it? and that agency woudl
               | use compliance (submit this and that form and follow this
               | and that process)... so it would seem that they act as
               | proxies for the value of the things you listed.
        
         | petermcneeley wrote:
         | There is a really simple number that tells you what the costs
         | of a company are vs its prices to users. Its called profit. So
         | are the pharama companies profitable?
        
           | dekhn wrote:
           | Yes, most large pharma are very profitable (it's one of the
           | most profitable sectors). As we liked to joke, Roche isn't so
           | much a pharma company as it is a wealthy family that invests
           | in pharma because it's so profitable (until recently there
           | was a very interest structure of family cross-ownership of
           | all the Basel-based pharma firms that was set up for or less
           | for MAD purposes).
        
         | notch656a wrote:
         | Those costs aren't all borne by corporations, just the profits.
         | The cost is the cost of public schooling of the children that
         | invent these things, the invention and development of internet
         | partially funded by DARPA that allows quickly conveying
         | scientific information these companies use, the millinia of
         | scientific research that precedes the invention.
         | 
         | The corporation then benefits from regulatory capture, and
         | insanely high regulatory barriers to lock away less capitalized
         | competitors from introducing their own unique drugs. Those who
         | can afford the insane regulatory costs then can squeeze
         | consumers dry.
         | 
         | Open up a maximally free market for pharmaceuticals and watch
         | these snakes die. If I want to GC/MS some shit I bought out of
         | some guys basement to check purity myself then let me.
        
           | mayapugai wrote:
           | Even in academia, where most research originates and matures
           | before being sold to corporations, the vast majority of
           | research is tax-payer funded. I wholeheartedly agree with you
           | stance. It's unsurprising that these regulatory barriers keep
           | all but the wealthiest corporations out of the market
           | considering that big pharma and insurance account for
           | significant share the donor-base of most politicians in the
           | United States.
           | 
           | Tax base funds the work, donor base collects the rewards.
        
             | dekhn wrote:
             | Most of the R&D done to make drugs isn't done at
             | universities. They do some initial discovery work and
             | invent entire new categories of drugs, but their overall
             | role in the process of taking a druggable target to market
             | is limited.
             | 
             | Academia gets to keep rewards; universities patent
             | discoveries and license the technology to industry. This
             | made $$$ for Stanford and UC (billions of dollars).
             | 
             | I am sympathetic to the idea that regular joe of US doesn't
             | get enough benefit for their tax payments but actually I
             | think if you look at all the benefits americans get
             | indirectly from living here, it's hard to say for certain
             | that individuals aren't recompensed properly. And, I
             | suppose, if they wanted, many people can buy stock in
             | pharma and enjoy the profits themselves.
        
           | dekhn wrote:
           | QC and regulatory costs are absolutely borne by the
           | corporations that are getting their drugs approved. Those are
           | major expenditures.
           | 
           | I'm not completely arguing with the idea that pharma
           | overprices drugs, but to me, that's a distinct problem from
           | who pays for, and benefits from research and development.
        
         | camillomiller wrote:
         | Just to frame all this a bit better: in Italy epipens cost...
         | wait for it... ZERO - nil - nada. You have a diagnose of
         | anaphylactic shock risk? You get epipens. Public healthcare
         | pays for it, therefore everyone pays for it with their taxes.
         | Without a prescription, you can get one for around 75EUR, which
         | is already considered criminally expensive.
         | 
         | This is true for thousands other products. So please now tell
         | me again how r&d and other costs justify the US prices for the
         | same drugs that are sold profitably Yet way cheaper in other
         | western markets.
        
           | tastyfreeze wrote:
           | I'm confused. Isn't this like saying I bought you lunch with
           | money I took from you last year so your lunch was free?
        
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