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‘Right to Repair for Your Body’: The Rise of DIY, Pirated Medicine (www.404media.co)
submitted 2 years ago by to c/technology@lemmy.world
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Sharing because I found this very interesting.

The Four Thieves Vinegar Collective has a DIY design for a home lab you can set up to reproduce expensive medication for dirt cheap, producing medication like that used to cure Hepatitis C, along with software they developed that can be used to create chemical compounds out of common household materials.

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[–] 14 points 2 years ago* (last edited 2 years ago) (5 children)

This could be very good for people with orphan diseases(diseases that are rare enough that they aren't profitable for private companies to research)

Also, having an orphan disease often results in insurance companies denying coverage for everything because they don't have a policy written up for that specific disease.... so there's no script for the workers to follow. Then your doctor has to argue with them, which can take weeks, in the meantime you have no medication.

Yeah, I'm not mad or anything. I wish I could've cooked up my own meds when insurance denied me life giving meds because they'd never heard of my disorder.

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  • [–] 9 points 2 years ago

    Insurance is absolutely, unambiguously, the worst. I had a stress echocardiogram denied by insurance yesterday because they don't think I need it. A test to try to identify a problem, what's my alternative? Wait to see if I drop dead? I guess in that sense I don't need it but c'mon. And I'm on one of the "good" plans.

    It seems like "deny everything and we'll save money on the people that can't/won't fight the denial" is actually common practice now.

    I hope their actuaries get to experience the bullshit and have time to regret their contributions to human suffering.

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  • [–] 8 points 2 years ago* (1 child)

    True! Hopefully, their tools are able to suggest ways to safely produce those meds, too.

    Also, I strongly hope they'll build something able to accurately verify that processes went through as intended, with the desired product present and no known and harmful or unknown compounds formed. Chemistry is full of surprises, especially organic one...

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  • [–] 5 points 2 years ago

    That would ideal! Also it'd be good if it didn't accidentally explode like meth labs tend to. Like you said, chemistry isn't easy, but if this thing can work it'd make us far less dependent on greedy insurance companies and corrupt pharma companies.

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  • [–] 5 points 2 years ago (1 child)

    I think that is one of the cases where it wouldn't help. The medical research still needs to happen and it requires experts.

    The tools provided by this organization are useful for manufacturing your own medication off of an existing, proven formula.

    What we need is for all this research to be government funded, so profitability isn't what decides whether a disease needs to be researched.

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  • [–] 2 points 2 years ago

    It would if there's already a therapeutic medication available(but more research could create a cure, or better therapies).

    Usually insurance will deny a medication for these diseases either because the medication currently available is older(no one prescribes that anymore!), or it's too expensive, or it's too new/was developed in another country. For example ireland developed a new medication for narcolepsy, but it's impossible to get in the US, nevermind getting insurance coverage.

    I'm on one med that was developed in the 60's and it's the only one that actually works. It's over $300 a month. The other newer one I tried made in the 90's is over $1000 a month and doesn't work as well. Insurance tried to deny coverage for both.

    The problem with older meds is there's fewer manufacturers so they can charge whatever they want due to lack of competition. There's little demand, so the few people who need it are charged out the ass for them since insurance will deny deny deny.

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