13 ms·

> “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

by mrxd 5y ago

> “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.

kragen 5y ago
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 5y ago
  > 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.
  - notch656a 5y ago
    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 5y ago
      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 5y ago
        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 5y ago
        > 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 5y ago
  >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 5y ago
    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 5y ago
      >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 5y ago
        I wasn't aware that analytical instruments could measure your economic or political ideology.
- mrxd 5y ago
  92% of contributors to the Linux kernel are paid by companies: https://www.suse.com/suse-defines/definition/linux-contributor/ 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 5y ago
    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 5y ago
      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 5y ago
        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.
- popcube 5y ago
  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...
pessimizer 5y ago
> 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 5y ago
  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 5y ago
    That's what I call Metacapitalism.
    - Tenoke 5y ago
      Seems odd to call it that as there's little 'capitalism' in it. It's abuse of state regulations rather than market forces.
hammock 5y ago
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 5y ago
  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 5y ago
    >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 https://archive.fo/IHK4J
    - kragen 5y ago
      It says 0.378 million doses have been distributed to healthcare facilities in the US. There have been 58 million confirmed cases in the US, 0.62 million new cases yesterday and 0.56 million new cases the day before. If they were to give those unallocated doses to every new covid case, they would be gone in 12 hours. So they are not abundant; they are scarce. Not enough are being made. It is true that I don't know how much Regeneron and Lilly are spending on making them, or how much they are getting paid, but monoclonal antibodies are usually very expensive, and I infer from the production levels that the expense is high enough that they don't have ten million doses sitting around just waiting to ship out.
jdavis703 5y ago
> 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.

by mrxd 5y ago

kragen 5y ago

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 5y ago
> 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.
- notch656a 5y ago
  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 5y ago
    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 5y ago
      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 5y ago
        > 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 5y ago
>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 5y ago
  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 5y ago
    >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 5y ago
      I wasn't aware that analytical instruments could measure your economic or political ideology.
mrxd 5y ago
92% of contributors to the Linux kernel are paid by companies: https://www.suse.com/suse-defines/definition/linux-contributor/ 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 5y ago
  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 5y ago
    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 5y ago
      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.
popcube 5y ago
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...

pessimizer 5y ago

> 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 5y ago
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 5y ago
  That's what I call Metacapitalism.
  - Tenoke 5y ago
    Seems odd to call it that as there's little 'capitalism' in it. It's abuse of state regulations rather than market forces.

hammock 5y ago

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 5y ago
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 5y ago
  >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 https://archive.fo/IHK4J
  - kragen 5y ago
    It says 0.378 million doses have been distributed to healthcare facilities in the US. There have been 58 million confirmed cases in the US, 0.62 million new cases yesterday and 0.56 million new cases the day before. If they were to give those unallocated doses to every new covid case, they would be gone in 12 hours. So they are not abundant; they are scarce. Not enough are being made. It is true that I don't know how much Regeneron and Lilly are spending on making them, or how much they are getting paid, but monoclonal antibodies are usually very expensive, and I infer from the production levels that the expense is high enough that they don't have ten million doses sitting around just waiting to ship out.

jdavis703 5y ago

> 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.