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.
I believe every American knows someone whose life is made substantially worse because of a lack of access to healthcare.
I want to set this up and learn to use it. I want to keep it and maintain it and wait. Because I’ll inevitably hear from someone that they can’t afford their life-saving medication.
Oh, also I have an exceedingly rare hereditary disease, so it feels like a certainty I’ll need it for myself someday.
I know someone whose life is made substantially worse because they have a lack of access to healthcare. They live in Europe and can’t get access to the specialized medicine that they need in the timeframe that they need it in. I’m not saying that socialized medicine is bad—I’m actually all for it—but it needs to be implemented well foe it to actually work. This is just my anecdotal evidence to say that just because everyone has access doesn’t automatically mean it’s adequate access.
I can’t really comment on the European experience though, so I said American, which I am, and which I am qualified to talk about.
I’m not European either. I’m also American. I wasn’t contradicting anything you were saying; I agree with it. I was just trying to add to the discussion by suggesting that if we are going to get universal healthcare right in America, we have to consider a lot more than just free access.
Hope John Green is aware of this. He’s fighting tuberculosis globally!
Here’s a fun thought, the drug you make fails but doesn’t kill you.
Instead you now have another life long ailment that cause pain/degradation of daily life.
Sounds like a great idea.
And that’s different from the commercial pharmaceutical industry how?
Commercial drugs are giving people life long diseases on top of the ones they’re trying to cure?
News to me, got any source?
The most notorious is probably thalidomide, but there are plenty others on this list of withdrawn drugs that cause long-term side effects.
Very interesting, I wasn’t aware of specifics. Obviously I don’t think it’s impossible, but I would think that the grand majority don’t, while this bootleg technique would have a higher rate of creating worse problems for people already suffering and essentially sealing their fate.
We need to tackle big pharma for the problem it is: greed and neglect and I don’t think a pirated solution will make that in any way better for people.
Maybe it does for some but hurts others worse. Which is the same coin as big pharma but worse for some. That’s my perspective, but I hope that an open-source style solution would gain more traction rather than one that’s essentially just ripped music.
People deserve to be healthy
Never heard of, eg, Vioxx or thalidomide, I take it?
As opposed to dying from the disease you already have because the traditional pharmaceutical industry makes the drugs you need out of your price range?
It won’t be a life long ailment for long if you’re going to die from a lack of care soon anyways.
No no.
In addition to
And stop pretending that the only people to use this are those that would absolutely need it. You know damn well penny pinchers would also go after this
Piracy is how you got Netflix.
This is how we’ll change the pharmaceutical industry. They’ll overreact and Streisand Effect this and it’ll blow up. Become normalized. The open source tech will improve.
This is a good thing. Period.
I wish there was some kind of open source collective organization under which you could release anything with eternal open source license that’d be free forever. It could be anything from software, tech or medicine like penicillin so that megacorps could not benefit from it in any way.
The Open Source Initiative has a giant list of licenses that anyone can use to make their works fully open-source.
Some are just for code, but I’m sure they could be adapted to things like medicine, if needed.
Pirating movies and games can’t kill you
Home brewing seizure medication can
This is America dude. Human life costs $7.25 an hour here. We can’t even do anything to keep children safe from their number 1 killer here.
Nobody cares. Those who do care are completely powerless to change anything.
Yes. Mistakes will happen. People will die. People die every day right now. Many of them because they can’t afford life saving medicine. I’d happy take a risk on this before I’d saddle my family with $50,000 a month for medicine that you can get in Canada or Mexico for $50.
Move to Canada.
Instructions unclear, moved to Alberta and I’m surrounded by Trump flags and austerity measures.
Canada doesn’t accept just anyone for no reason.
Can confirm. I tried. Long time ago. Spoke to a lady at a Canadian Embassy.
I didn’t meet the education requirements.
We can’t even do anything to keep children safe from their number 1 killer here.
By this the parent commenter means “car crashes,” by the way. Car dependent zoning is literally mass-murdering more children than school shooters ever did and we’re doing almost nothing to fix it.
I personally think open source software and hardware is a good starting point to making DIY stuff legal in the future.
The all new sudafeb…like Sudafed but with a D at the end because they’re chemically the same just with a D at the end.
This is fantastic. If you know what the problem is, because you’ve been diagnosed or whatever, and you know what medicine will do it, and you are capable of making it, I see no issue at all with this. You don’t need a PhD in computer science to browse the internet.
You’ve gone to a malicious website. Now you’ve died.
See, the risks of surfing the web incorrectly are slightly different than the risks of creating medicine incorrectly.
You’ve committed the “crime” of being poor while diagnosed with a lethal (but curable) illness that you can’t afford. Now you’ve died.
See, the risks of being poor are slightly different than the risks of not being poor.
Surely. But let’s be realistic. If you’re poor and sick, you’re broke and have no free time.
Nitro Clorox Queen 👑! For your COVID! It’s better than over the counter hydrocloroqueen!
This is extremely dangerous and also something I feel must be considered a natural and obvious extension of a right I believe to be fundamental: bodily autonomy.
Would I do this? Probably not, maybe for some medicines, that are easily made administrable from bulk chemicals but likely not. But behind all rights stands bodily autonomy. It is your flesh and not mine. If we don’t want people doing this themselves the lever we should use is easing access to expert made medicines. Desperate people do stupid things.
Also this is cyberpunk as hell and aesthetically I’m so here for it
I think an off the shelf microlab that can reliably synthesize a particular medicine is something that’s commercially viable, which is probably a safe middle ground here and sort of what they’re proof of concepting.
Rather than putting together a DIY lab like this, a pre-made kit that makes one medication would easily make a ton of meds available. Not just here but all around the world.
There was a serious fight against this in the COVID years, saying it was fighting anti-science that was recommending fake medicine to people. How can this model possibly subvert what happened in those years?
This is extremely dangerous and also something I feel must be considered a natural and obvious extension of a right I believe to be fundamental: bodily autonomy.
There is a significant distinction between the right to bodily autonomy and the right to distribute quack medicine. And that’s sort of the rub. As soon as you start marketing your product to third parties under false pretexts, we’re not longer talking about an individual’s right to self. And we get into an even more tangled web when we start talking about health care for children or the elderly, who lack the mental acuity to make informed choices.
Also this is cyberpunk as hell and aesthetically I’m so here for it
Everyone wants to get the military grade Sandevistan drive. Nobody thinks they’re going to succumb to cyberpsychosis.
Compounding pharmacies should not be subjected to patents. Then the costs are all local instead of tithes to the corporate clergy.
I agree with the idea of bodily autonomy. Above all, someone should have the right to do, or not do, whatever they want with their own person.
Whether that is to listen to doctors advice, buy pharmaceuticals and self-administer as prescribed, or even end your own life, and everything in between.
Quick disclaimer, suicide should still be evaluated by a psychiatric professional, and simply being suicidal shouldn’t necessarily mean that nobody can, or should stop you from committing that act. I’m mostly referring to medically assisted self termination, after the appropriate safeguards, checks, and balances have been cleared. Simply wanting to off yourself without being cleared as having sound mind should be something we, as a society, should address carefully, with the assistance of mental health professionals.
With all that being said: I probably would DIY some pharmaceuticals. Anything that’s an opiate or other restricted substance, definitely not. But if I can buy the ingredients without needing a special permit or license, I definitely would.
While this is definitely an interesting proposition, for most people in the US wouldn’t something like Mark Cuban’s CostPlus drugs website be a more reasonable solution?
They could do that, but the drugs are still much too expensive comparatively, and it doesn’t include many drugs, especially the ones that are the most absurdly priced.
For instance, after looking through various articles on him and scraping together some of the data, out of the medications referenced as being some that he’s made:
Misoprostol (Abortion Medication) - $14.90 on CPG - $0.89 via MicroLab
Sovaldi (Cures Hepatitis C) - Not available on CPG (normally $84,000) - $70 via MicroLab
Kalydeco (Treats Cystic Fibrosis) - Not available on CPG (Normally ~$500/day) - $10/day via MicroLab
Daraprim (Treats Parasitic Diseases & Some AIDS Patients) - $2443/30 pills on CPG - $80/30 Pills via MicroLab
Epinephrine (Treats Allergic Reactions, AKA epipen) - Not available on CPG (Normally $650-$750) - Initially $30 via MicroLab ($3/reload after)
The pharmaceutical industry is so screwed up, and these prices only show it more clearly.
They don’t have everything and especially rare mega expensive stuff that’s not widely generic options
Idk. Medicine is one of those skills where I prefer someone that has studied for 7 years vs me who watches a 15 min how to video and read webmd
Obviously the people who would benefit most from this technology would prefer a doctor and pharmacy to be involved as well. The point is that personal preference doesn’t really mean much when the preferred option is inaccessible and the alternative is death or a dramatically reduced quality of life. You do the best with what you have.
Well that’s the coolest part about this, everything is based on the existing research.
The drugs they’re making are the exact same chemical compounds formulated by the drug companies, and contrary to popular belief, the compounds can actually be relatively simple, it’s the process of finding which compound that takes the most money from R&D.
So if you have 2-3 very standard chemicals, with well known reactions and outcomes, and you have the exact blueprint of what the final result should look like, and you can chemically test it afterward to see if it combined as expected, then anyone who has enough reason to use this instead of traditional means (i.e. being priced out of lifesaving medication completely) can be reasonably confident it will work.
This is super cool and helpful as a resource but I really don’t think people without a chemistry background should be doing anything more than following precise instructions, hopefully with some form of verification test at the end. The idea to have people without a chemistry background use a forked version of askcos and just run with it is a little scary.
The affordable Controlled Lab Reactor for diy is fantastic for helping people follow precise instructions to the letter just all of those instructions should be meticulously vetted by actual chemists and have some safeguard tests at the end where necessary. It seems the founder wants that vision too at the end of the conference just there’s not enough of a community yet to support it.
Yeah… This is a bit sketchy. Pharmaceuticals aren’t just something that an amateur can make by following step by step instructions. Even something as simple as baking a cake requires some basic experience to know when things are going right or wrong.
Even maintaining the calibration on a CLR requires some background experience, let alone building and programming one all on your own. With your actual reactor being as small as a mason jar, it means the margin for error is going to be small as well.
This is neat for people with a background in chemistry, but I don’t really see it as anything but dangerous for the general public. They also are fudging their math a bit to make things seem a lot cheaper. Reagents can be really cheap at bulk prices, but you have to spend the time looking for them, and they aren’t equating the cost of a trained chemist making these medications.
I see drug lords getting into this if it is feasible and it isn’t a good scenario. It would paint them as real saviors and make the situation more unstable.
Technically, drug dealers are using the tech (more specifically, other people are using it, then selling the product to the drug dealers, who then sell it to their customers as a ‘service’ included with the drugs)
The thing is, they’re not doing it to make stronger drugs, or for PR purposes. They’re actually adding pre-exposure prophylactics (PrEPs) into their heroin, which then creates the side effect of preventing the contraction of HIV from the needles. (referenced about 1/3rd of the way down this article)
If people are already going to be addicted to these drugs, them not getting HIV from it is just one harm reduction measure that can reduce their risk of serious, permanent illness.
Might be safer for HRT, than having to trust a 3rd party to buy it from if you live in a place that can’t get it thru insurance or Dr.
Yeah, no.
Your body isn’t a simple laptop where you plug out some broken componi, replace that component, and you’re done. There is a reason why even “simple” nurses go through years of training before being able to call themselves nurses.
If it comes to your body, shits complicated, yo!
Everyone should, must have the right to good quality healthcare, but it can’t be from yourself, by yourself. You need a doctor!
Even those trans humanist types that put magnets and such in their bodies are really on the edge with what will and won’t kill you. Add DIY CRISPR sets, which is just the worst thing I’ve ever heard, and you have arecipe for disaster.
There’s a difference between injecting unknown crispr mutations and replicating known chemical compounds. I would guess the main danger here is the impurity
I also don’t have faith that people would do it properly. Chemicals are weird and not following instructions or not knowing what you’re doing can lead to disaster.
I just hope that at the very least those that try for their own use wouldn’t get penalized for it if they’re desperate enough to try
I mean, that’s fair. I would just hate to see people seriously hurt themselves because they don’t have access to something. But that brings up a whole new conversation, and it’s just sad that we even have to consider this.
Another aspect that came to mind is: people hurting themselves and ‘putting stress’ on the hospitals. Obviously that’s pretty unrealistic, might be a point someone would argue though.
There is a difference between knowing which medicines to give someone. And then having that knowledge of which to choose (after seeing a healthcare professional), and then being able to buy (make) any brand of that item.
The New Text Document makes this.
Hail Four Thieves Vinegar Collective!
More DIY, right to repair, open source living.
I fucking love pirate medicine. Fuck the US healthcare system, what good is having the “best healthcare in the world” if you can’t even afford mediocre healthcare?
Did you really call the US healthcare system the best in the world?
No, they specifically put it in quotes, to make the distinction.
No. Of course not. I put it in quotes since I was being sarcastic.
If it was the best healthcare in the world, we’d have the best outcomes and we don’t even have that for rich people. We have a (non-metric) shit ton of world class research universities and highly respected agencies like the FDA and NHS but Elon Musk, the richest man in the world, can’t even get the mental health services he obviously needs.
I’d obviously rather go to an American hospital than a hospital in most of the world but spending a lot to cover up a shitty system isn’t as good as a functioning system.
The NHS is British, not american
Yep. Thanks for catching that. I meant NIH, the U.S. National Institutes of Health and accidentally combined it with HHS (the U.S. Dept. of Health and Human Services that NIH is an agency within) and that was apparently too many acronyms.
but Elon Musk, the richest man in the world, can’t even get the mental health services he obviously needs
Lmfao
I’d rather get healthcare at all. I’ve been too poor to afford any medical care at points in my life, I’d settle for even some low quality care as opposed to none at all and hoping that this new weird pain either is insignificant and goes away without issue, or it gently takes me out in the night.
I’m excited to see where pirate medicine goes. I’ve met a trans woman who told me that her DIY HRT was life changing in the best possible way, and I can only dream of what would happen if people started making their own Insulin or T or whatever
I was first on the fence, but yeah, at the very least, it’s a clear signal to big pharma, and I welcome that move. Also, if this will actually get safe, reliable, and controlled enough, I’d love to have some basic spare parts and make my meds at home. But that would probably require something more complex than Microlab.
Don’t trust your life with this unless you have to. Curious project nonetheless!
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 my disorder.
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.
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.
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.
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 harmful compounds formed. Chemistry is full of surprises…
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.
