this post was submitted on 15 Dec 2024
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You get what you pay for, in a sense. How would the public respond to a one-time cure being sold for more than the total lifetime cost of treatment? Not well, but the thing is that responding like that is effectively expressing a preference for the lifelong treatment.
Are you trying to be Devil's Advocate for an imaginary scenario? WTF
Why not?
It's not an imaginary scenario. For example, look at Sovaldi, the $84,000 hepatitis C cure. That's less than the total cost of long-term treatment but it didn't exactly make Gilead popular.
But does it ACTUALLY cost that much or do they charge that much because they can, like insulin?
It costs enough that it was featured at DEFCON this past year.
Four Thieves Vinegar Collective did a presentation where they made their own hep-c medication for a few hundred bucks + equipment.
Here is their website for those interested Link. But be warned, these guys very much have crossed a line in regards to IP law and general medical saftey practices. Governments do not care if your trying to make insulin or meth, they just see a mad scientist making drugs, and these nerds intend to make it a fight.
four thieves do not include any quality control, and plugging a jar to arduino does not grant you expertise needed. they rely heavily on intermediates access to which can be restricted pretty badly, and pricing of these is plain wrong because their scraper mixes up weights of amounts sold. frankly i doubt they made it at all, and any of these syntheses has great potential of killing people who try to do it. take from a dude who sits in medicinal chemistry for 30+ years now https://www.science.org/content/blog-post/anarchist-drugs-again
if you can get their procedures, i'd like to review them because the way they make these, i guarantee there will be incredible footguns included
100% but they are trying, they are mad scientists and see the same problems we all do but unlike the Adjuster they seek a different soultion to the failures of the system. These guys got prime stage space at DEFCON this past year, they are clearly having some success.
The other part is that in this regard, Im just a layperson on this subject and have enough expertise to probably recreate the set up (the printed parts and arduinos), but not to do the chemistry (Nor do I have a need to, I just read articles on their presentation and want to discuss them). You are also not the first chemistry wizard who ive seen or directly talk to about these guys that expressed that exact sentiment of how crazy/stupid this is.
The point is that people are desprate enough when dealing with the medical world in the US that there is a group trying to reverse engineer important drugs, or wacking insurance CEOs. So far these are the only two things that ive seen that are moving the needle and not in a good way.
they made juicero for backyard chemistry. for what this thing can do, all you need is thermometer, hotplate with magnetic stirrer + some standard glassware. this already avoids problems with damage to and leaching from plastics by corrosive solvents, allows for normal air-free techniques to be used (needs inert gas) and is several times cheaper. there are some weird design choices (if you are already using syringes, why not use syringe pump?? why use heat exchanger instead of putting heating element in water bath? etc etc) i'm yet to see procedures in human-readable form. there's little emphasis on purification nevermind analytics. i guess they made daraprim only because nurdrage did multipart instructional video on it
sovaldi is priced like this because they can, once it goes off patent price will drop significantly, drop one zero at least. japanese price is 300$ because govt negotiated it and covers most of it (99%). price for egyptian govt is 900$
the other big thing is that for most with chronic illnesses, the public isn't looking, nor do they care, if i had the money, i would try anything, but i hardly leave my house and i can't afford to work, so i'll take whatever my insurance covers even if that ininofitself decreases my lifespan and causes me pain, hey actually, you just reminded me of a cure that "the public" doesn't talk much about, when will euthanasia be legal? oh but that also is an abrupt end to a condition that could still be squeezed for profit, do you know your audience?
It may not be legal, but when self-administered it's not like you can be punished for it.
bold of you to assume that i have the means to self-administer, if one doesn't have the means are they just not worthy of peace? or do they have to risk someone going to jail for murder for assisting?
That's fair.