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That seems both super dangerous, and super awesome. It's not something that we should have to consider. But this is the world we live in, now; legitimate suppl

That seems both super dangerous, and super awesome. It's not something that we should have to consider. But this is the world we live in, now; legitimate supply lines of life-saving medicine have collapsed for a fair number of people. I understand why people might be troubled by someone actively going out and advocating this as opposed to simply making the information available, but if you're offered medicine with 95% efficacy that you can afford and use vs. a well-regulated 99.99% that only exists theoretically...well, come on.

nkrisc 9y ago
Consider this story that mades the rounds recently as well: people using antibiotics marketed for fish because they can't afford or get access to anything else. https://motherboard.vice.com/en_us/article/bjxwma/people-are-buying-fish-antibiotics-because-they-cant-afford-human-ones https://motherboard.vice.com/en_us/article/bjxwma/people-are...
- miguelrochefort 9y ago
  Also very popular amongst survivalists.
JumpCrisscross 9y ago
When drug companies issue patents, do they not also publicise production methods?
- vonmoltke 9y ago
  Generally, no. Even if they did, based on my experience with process-sensitive non-pharmaceutical products it takes a lot of experimentation and refinement to execute the process correctly.
- vqc 9y ago
  It depends on the scope of the patent. But to some extent, kind of. See, e.g., the patent for an adalimumab (Humira) formulation https://patents.google.com/patent/US9085619B2/en https://patents.google.com/patent/US9085619B2/en. The patent discloses materials and methods for creating a formulation of the drug. The real issue is probably that there are so many moving parts, especially when you get to the more complex drugs (e.g. antibodies). You would have to go through a million patents to find all the information required to create the actual molecule and also get it in a state to put into your body. And even with all the information, it is unlikely anyone is sufficiently resourced (whether it's money, tools, or know-how) to actually make something viable.
- sigstoat 9y ago
  as vonmoltke suggests, even if you've got some chemical synthesis procedure laid out in a peer reviewed journal, you are, in the best case, expert man hours away from successfully duplicating it. and you'll only know you've successfully duplicated it if you can run the result through really expensive analytical equipment to confirm that 1) you made the stuff you wanted to make and 2) it doesn't have impurities that are problematic. (as a minor defense of the pharma companies, you're paying them not just to do a bunch of organic synthesis for you, but also to do ongoing QA that the synthesis process is working correctly. and not all processes are equally easy/amenable to industrial-scale duplication.)
  - drvdevd 9y ago
    Obviously this is true. There’s much that goes into industrial synthesis that someone with a setup like his at home just can’t currently reproduce, and safely. What I find most dubious about the article is the lack of attention to synthetic biology. Because QA in that sense can become say, “this modified organism can produce the drug in question under most conditions and all future populations will carry the new genes with X% assurance” - ONCE -and you’re done. This is quite possibly the real Pharma killer, IMO.
    - vqc 9y ago
      But only kind of. Even if you could get a strain of yeast to produce a specific antibody 100% of the time, how reliably could you get the yeast to grow? If you can get it to grow, how reliably can you extract a enough of the antibody to form just one dose? If you can extract, can you get it into a formulation that is pharmaceutically viable? Its not just about synthesis. There's so much tooling and expertise that goes into front end, back end, deployment, db, QA, etc ,etc, etc just to get one app going. Why would would drug deployment be any different?
      - drvdevd 9y ago
        Well, yes you’re correct, there are associated complexities I’ve glossed over. My point however is simply that all of these complexities only really need to be solved once by an expert or team of experts such that non-experts can then utilize such a biotechnology (“yeast strain”) to produce some medicinal compound or other useful engineered metabolite. A yeast strain that can’t be reliably cultivated by a non-expert with relative ease and safety (in a non-laboratory) wouldn’t make the cut, in theory. Also the same semi-synthetic organism could be applied in traditional pharmaceutical process settings as well, if for no reason other than cost reduction (and probably workforce reduction as well). So even “big pharma” has some incentive to contribute to this sort of technology.
- mandevil 9y ago
  It isn't even the basics of the synthesis chain that are difficult. Most (small molecule) stuff a lab chemist could whip up a batch of given a bit of time and reasonable access to precursors. But this is exactly like saying "Reddit is just a few SQL queries, a reasonable programmer could whip up their own version in a weekend." Just like there is only one reddit/StackOverflow/Facebook even though plenty of people have the same basic idea, even knowing the chemical formula doesn't help that much. The trick is in the execution: generating reliable quantities of reliable strength and without any contaminants. There is a whole field, process engineers, devoted to this quite difficult problem.
dannyw 9y ago
Agreed. When you actively advocate for this, do you face moral responsibility when someone prepares it wrong and dies? (I’m pretty sure the legal answer would be yes on so many fronts)
- deleted 9y ago
  [deleted]
- wavefunction 9y ago
  I don't know that the legal system necessarily cares about morality or moral responsibility. It seems like the only criteria that would matter would be legal responsibility, whatever that standard might be.
  - QAPereo 9y ago
    If you take actions which a reasonable person would expect to cause harm to others, there is a legal dimension there ranging from civil liability, to the extreme of 2nd degree murder via “depraved indifference” statutes.
    - wavefunction 9y ago
      Good points.
  - steveeq1 9y ago
    Or the criteria: "which moral stance makes me the most profit?"
  - LeifCarrotson 9y ago
    It isn't always about whether the legal system cares. They're asking whether or not moral people should care. Those can be very different.
- Y_Y 9y ago
  If you don't misrepresent it then I can hardly see how. Does the writer of a recipe book incur blame if someone undercooks their chicken?
WalterSear 9y ago
The cost of medicine I require to be functional enough to hold down a job has risen so much that the copay is the equivalent of the entire out-of-pocket cost from a few years ago. The medication was discovered in 1969. The application method, which is the shitty excuse for the patents protecting its $2,200/month price tag, was first approved for use by the FDA in 1979. The drug has been for sale in it's current form for over a decade.
- octaveguin 9y ago
  Enbrel? They just received another patent extension, too. This is what government granted monopolies look like.
  - dv_dt 9y ago
    This is what the breakdown of working competitive markets look like, and in this case it takes both government monopolies, as well as well as overwhelming short-term greed on the part of the private companies. Long term don't these companies think that charging outrageous prices for drugs will cause a future voter/government backlash of some sort... or maybe they think they should extract profits now because of a chance of drug price regulation coming to the US in the future?
    - Sangermaine 9y ago
      >Long term don't these companies think that charging outrageous prices for drugs will cause a future voter/government backlash of some sort No, because it demonstrably won't. People say they're angry and then do nothing about it. The US has an entire political party angrily decrying any effort to regulate healthcare as socialist slavery. The drug companies know they'll be just fine. Maybe some token slaps on the wrist and public performance of cosmetic changes to appease people now and then, but nothing will happen to them.
      - dv_dt 9y ago
        Perhaps, though I think I'm more energized personally voting & with campaign involvement in the upcoming elections this year than ever before. And part of that is knowing that it might help Medicare for all or other universal healthcare options - maybe not this election or the even the next - but personally I feel it has to happen and is worth working towards.
Sangermaine 9y ago
>but if you're offered medicine with 95% efficacy that you can afford But it's not clear at all this is the case here. The article itself notes that it's unknown whether anyone has ever used any of these DIY medicines/medical devices, let alone how well they actually work. For all we know he could be pushing complete nonsense that kills people.
- pizza 9y ago
  He could be, but.. it's not as if all federally-sanctioned medicines are not complete nonsense that (don't) kill people, either. Let alone merely having greater iatrogenics than benefits. Relatedly, when doctors strike, mortality rates decrease [0]. Plus, very useful medicines that are deemed too unsafe to become publicly consumed may be totally safe for subsets of the general population, e.g. based on differing expression of enzymes, or other phenotypic differences. If you are (more or less) coping just fine with a health problem, (most often) you shouldn't really take any medicine whatsoever, regardless of whether or not it is approved. Only if you are distressed and desperate can you (a priori) expect medicine to do more good than harm. And if you are in that category, and the medicines that exist officially did not help, then you must make other attempts to rectify the problem in order to avoid danger. Admittedly it's not much of a source of relief, but the good thing about the nature of hobbyist tinkering networks is that information about dangers spreads fast, as well as information about discovered panaceas (both when the results are replicated in their favor, and when they falsify the panacea). [0] https://www.ncbi.nlm.nih.gov/pubmed/18849101 https://www.ncbi.nlm.nih.gov/pubmed/18849101
agumonkey 9y ago
It's dangerous so far. I'm still all for better information and more diy. People will understand their health and real value of products better.
nylonstrung 9y ago
I think a middle ground is sourcing them from private chemists on Alibaba and then getting spectrometry tests done to verify purity
random023987 9y ago
> super awesome. This is not super-awesome. Humans have made incredible progress by specializing and optimizing, and this process improves productivity, efficiently, and (most importantly when it comes to medicine) safety. The idea that we will have people taking the risk of getting sick or dying because they are not able to manufacture drugs with the same purity and potency as pharmaceutical companies shows there is a huge problem with the status quo.
- leggomylibro 9y ago
  Yes, that also seems pretty clear. But we are here, and this is now. Complaining is easy and feels good, but let's talk practical solutions.
tritium 9y ago
Collapsed? Or were supply lines selectively destroyed by market-cornering adversaries, knowingly, according to the degree of “demand” which might be extracted?
losername 9y ago
If this is anything like open source in software (in the beginning) then many either never get to compile the dependencies needed to build from the source or run into hardware incompatibilities and incompatible derivate packages with all the ensuing bugs like blindness, deafness, and more serious malfunctions. And when it works the functionality will be severely limited. I'm half joking, but this will need a huge caveat emptor.

nkrisc 9y ago

Consider this story that mades the rounds recently as well: people using antibiotics marketed for fish because they can't afford or get access to anything else. https://motherboard.vice.com/en_us/article/bjxwma/people-are-buying-fish-antibiotics-because-they-cant-afford-human-ones https://motherboard.vice.com/en_us/article/bjxwma/people-are...

miguelrochefort 9y ago
Also very popular amongst survivalists.

JumpCrisscross 9y ago

When drug companies issue patents, do they not also publicise production methods?

vonmoltke 9y ago
Generally, no. Even if they did, based on my experience with process-sensitive non-pharmaceutical products it takes a lot of experimentation and refinement to execute the process correctly.
vqc 9y ago
It depends on the scope of the patent. But to some extent, kind of. See, e.g., the patent for an adalimumab (Humira) formulation https://patents.google.com/patent/US9085619B2/en https://patents.google.com/patent/US9085619B2/en. The patent discloses materials and methods for creating a formulation of the drug. The real issue is probably that there are so many moving parts, especially when you get to the more complex drugs (e.g. antibodies). You would have to go through a million patents to find all the information required to create the actual molecule and also get it in a state to put into your body. And even with all the information, it is unlikely anyone is sufficiently resourced (whether it's money, tools, or know-how) to actually make something viable.
sigstoat 9y ago
as vonmoltke suggests, even if you've got some chemical synthesis procedure laid out in a peer reviewed journal, you are, in the best case, expert man hours away from successfully duplicating it. and you'll only know you've successfully duplicated it if you can run the result through really expensive analytical equipment to confirm that 1) you made the stuff you wanted to make and 2) it doesn't have impurities that are problematic. (as a minor defense of the pharma companies, you're paying them not just to do a bunch of organic synthesis for you, but also to do ongoing QA that the synthesis process is working correctly. and not all processes are equally easy/amenable to industrial-scale duplication.)
- drvdevd 9y ago
  Obviously this is true. There’s much that goes into industrial synthesis that someone with a setup like his at home just can’t currently reproduce, and safely. What I find most dubious about the article is the lack of attention to synthetic biology. Because QA in that sense can become say, “this modified organism can produce the drug in question under most conditions and all future populations will carry the new genes with X% assurance” - ONCE -and you’re done. This is quite possibly the real Pharma killer, IMO.
  - vqc 9y ago
    But only kind of. Even if you could get a strain of yeast to produce a specific antibody 100% of the time, how reliably could you get the yeast to grow? If you can get it to grow, how reliably can you extract a enough of the antibody to form just one dose? If you can extract, can you get it into a formulation that is pharmaceutically viable? Its not just about synthesis. There's so much tooling and expertise that goes into front end, back end, deployment, db, QA, etc ,etc, etc just to get one app going. Why would would drug deployment be any different?
    - drvdevd 9y ago
      Well, yes you’re correct, there are associated complexities I’ve glossed over. My point however is simply that all of these complexities only really need to be solved once by an expert or team of experts such that non-experts can then utilize such a biotechnology (“yeast strain”) to produce some medicinal compound or other useful engineered metabolite. A yeast strain that can’t be reliably cultivated by a non-expert with relative ease and safety (in a non-laboratory) wouldn’t make the cut, in theory. Also the same semi-synthetic organism could be applied in traditional pharmaceutical process settings as well, if for no reason other than cost reduction (and probably workforce reduction as well). So even “big pharma” has some incentive to contribute to this sort of technology.
mandevil 9y ago
It isn't even the basics of the synthesis chain that are difficult. Most (small molecule) stuff a lab chemist could whip up a batch of given a bit of time and reasonable access to precursors. But this is exactly like saying "Reddit is just a few SQL queries, a reasonable programmer could whip up their own version in a weekend." Just like there is only one reddit/StackOverflow/Facebook even though plenty of people have the same basic idea, even knowing the chemical formula doesn't help that much. The trick is in the execution: generating reliable quantities of reliable strength and without any contaminants. There is a whole field, process engineers, devoted to this quite difficult problem.

dannyw 9y ago

Agreed. When you actively advocate for this, do you face moral responsibility when someone prepares it wrong and dies? (I’m pretty sure the legal answer would be yes on so many fronts)

deleted 9y ago
[deleted]
wavefunction 9y ago
I don't know that the legal system necessarily cares about morality or moral responsibility. It seems like the only criteria that would matter would be legal responsibility, whatever that standard might be.
- QAPereo 9y ago
  If you take actions which a reasonable person would expect to cause harm to others, there is a legal dimension there ranging from civil liability, to the extreme of 2nd degree murder via “depraved indifference” statutes.
  - wavefunction 9y ago
    Good points.
- steveeq1 9y ago
  Or the criteria: "which moral stance makes me the most profit?"
- LeifCarrotson 9y ago
  It isn't always about whether the legal system cares. They're asking whether or not moral people should care. Those can be very different.
Y_Y 9y ago
If you don't misrepresent it then I can hardly see how. Does the writer of a recipe book incur blame if someone undercooks their chicken?

WalterSear 9y ago

The cost of medicine I require to be functional enough to hold down a job has risen so much that the copay is the equivalent of the entire out-of-pocket cost from a few years ago. The medication was discovered in 1969. The application method, which is the shitty excuse for the patents protecting its $2,200/month price tag, was first approved for use by the FDA in 1979. The drug has been for sale in it's current form for over a decade.

octaveguin 9y ago
Enbrel? They just received another patent extension, too. This is what government granted monopolies look like.
- dv_dt 9y ago
  This is what the breakdown of working competitive markets look like, and in this case it takes both government monopolies, as well as well as overwhelming short-term greed on the part of the private companies. Long term don't these companies think that charging outrageous prices for drugs will cause a future voter/government backlash of some sort... or maybe they think they should extract profits now because of a chance of drug price regulation coming to the US in the future?
  - Sangermaine 9y ago
    >Long term don't these companies think that charging outrageous prices for drugs will cause a future voter/government backlash of some sort No, because it demonstrably won't. People say they're angry and then do nothing about it. The US has an entire political party angrily decrying any effort to regulate healthcare as socialist slavery. The drug companies know they'll be just fine. Maybe some token slaps on the wrist and public performance of cosmetic changes to appease people now and then, but nothing will happen to them.
    - dv_dt 9y ago
      Perhaps, though I think I'm more energized personally voting & with campaign involvement in the upcoming elections this year than ever before. And part of that is knowing that it might help Medicare for all or other universal healthcare options - maybe not this election or the even the next - but personally I feel it has to happen and is worth working towards.

Sangermaine 9y ago

>but if you're offered medicine with 95% efficacy that you can afford But it's not clear at all this is the case here. The article itself notes that it's unknown whether anyone has ever used any of these DIY medicines/medical devices, let alone how well they actually work. For all we know he could be pushing complete nonsense that kills people.

pizza 9y ago
He could be, but.. it's not as if all federally-sanctioned medicines are not complete nonsense that (don't) kill people, either. Let alone merely having greater iatrogenics than benefits. Relatedly, when doctors strike, mortality rates decrease [0]. Plus, very useful medicines that are deemed too unsafe to become publicly consumed may be totally safe for subsets of the general population, e.g. based on differing expression of enzymes, or other phenotypic differences. If you are (more or less) coping just fine with a health problem, (most often) you shouldn't really take any medicine whatsoever, regardless of whether or not it is approved. Only if you are distressed and desperate can you (a priori) expect medicine to do more good than harm. And if you are in that category, and the medicines that exist officially did not help, then you must make other attempts to rectify the problem in order to avoid danger. Admittedly it's not much of a source of relief, but the good thing about the nature of hobbyist tinkering networks is that information about dangers spreads fast, as well as information about discovered panaceas (both when the results are replicated in their favor, and when they falsify the panacea). [0] https://www.ncbi.nlm.nih.gov/pubmed/18849101 https://www.ncbi.nlm.nih.gov/pubmed/18849101

agumonkey 9y ago

It's dangerous so far. I'm still all for better information and more diy. People will understand their health and real value of products better.

nylonstrung 9y ago

I think a middle ground is sourcing them from private chemists on Alibaba and then getting spectrometry tests done to verify purity

random023987 9y ago

> super awesome. This is not super-awesome. Humans have made incredible progress by specializing and optimizing, and this process improves productivity, efficiently, and (most importantly when it comes to medicine) safety. The idea that we will have people taking the risk of getting sick or dying because they are not able to manufacture drugs with the same purity and potency as pharmaceutical companies shows there is a huge problem with the status quo.

leggomylibro 9y ago
Yes, that also seems pretty clear. But we are here, and this is now. Complaining is easy and feels good, but let's talk practical solutions.

tritium 9y ago

Collapsed? Or were supply lines selectively destroyed by market-cornering adversaries, knowingly, according to the degree of “demand” which might be extracted?

losername 9y ago

If this is anything like open source in software (in the beginning) then many either never get to compile the dependencies needed to build from the source or run into hardware incompatibilities and incompatible derivate packages with all the ensuing bugs like blindness, deafness, and more serious malfunctions. And when it works the functionality will be severely limited. I'm half joking, but this will need a huge caveat emptor.