this post was submitted on 05 Sep 2024
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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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[–] smiletolerantly@awful.systems 1 points 2 months ago (12 children)

OK, this is only tangentially related but it has been on my mind lately and I need to rant:

I am T1 diabetic. Over the last decade, a LOT has happened to improve my life, especially in regards to no longer needing to check glucose levels with blood, as glucose sensors you wear on your arm have become ubiquitous.

It started with a dedicated device that you needed to hold up to the sensor to get a reading (much nicer than pricking your finger) to that sensor being able to notify the dedicated device of high/low glucose values (yay! Sleep through the night, knowing you'll be woken up if something is wrong) to the sensor now constantly streaming glucose values to your phone.

Which is fantastic.

In theory.

In practice, there are two companies making these sensors (OK, there's a couple more, but they suck way more and are much less commonly used).

And both of their closed-source apps suuuuuuuuck. They do the bare minimum and nothing more. (Actually, it's worse than that. Ask me if you want to know. It's its own rant.)

Then there's xdrip+, a FANTASTIC app made by diabetics for diabetics. Instead of just showing you "this is your glucose" and sounding an alarm, once, when it's required, you can (just off the top of my head): Set an arbitrary amount of alarms with their own behaviors, which can be configured to vary by time of day; show the glucose everywhere (notification, lock screen, home screen,...); mute alarms for a custom time; do not sound an alarm if you're trending in the correct direction fast enough; do not sound the alarm multiple times if your are jittering around the threshold; notify other people automatically in case of emergency; and roughly 1000 things more. The app is well maintained, and of course open source.

Can you guess what the problem is?

That's right, manufacturers disapprove of using this app. For the worse one of the two sensors mentioned, the community reverse engineered the communication and it is now working perfectly with the app. For the better sensor, they can't and won't due to fear of legal repercussions.

It's my health. And I need to decide between worse hardware and useless software.

There's no technical reason for this. I dream of the EU passing a law that requires manufacturers of wearable medical devices to publish the comm protocols and to legitimize use of third party software.

Rant over.

[–] havocpants@lemm.ee 0 points 2 months ago

It’s its own rant

I sympathise with the state of diabetic sensor apps, but can I just say that it makes me so happy when people understand and use correct grammar.

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[–] etchinghillside@reddthat.com 0 points 2 months ago (5 children)

With the same risk to blindness as moonshine?

[–] katja@lemmy.blahaj.zone 0 points 2 months ago (1 children)

I you make your own, there is no risk for blindness. Blindness comes from methanol, not ethanol. If you use a yeast based process to produce the alcohol and then distill it, there is no way to accidentally produce methanol in that process. The cases where people get blind or die from moonshine stems from when the feds replaced moonshine with methanol to be able to make that claim and disrupt the business of organized crime during the prohibition. There are still cases now and then where people try to make drinkable alcohol from some industrial base and don't know how to.

TLDR: Don't buy, make.

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[–] stevedidwhat_infosec@infosec.pub 0 points 2 months ago* (last edited 2 months ago) (2 children)

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.

[–] AbouBenAdhem@lemmy.world 0 points 2 months ago (4 children)

And that’s different from the commercial pharmaceutical industry how?

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[–] ArchRecord@lemm.ee 0 points 2 months ago (1 children)

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.

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[–] catch22@programming.dev 0 points 2 months ago* (last edited 2 months ago) (1 children)

By far one of the most interesting articles I've seen on Lemmy so far, thanks for the link

[–] dexa_scantron@lemmy.world 0 points 2 months ago

404 Media is doing excellent work; if you like this kind of thing you might want to sign up for their newsletter.

[–] Sterile_Technique@lemmy.world 0 points 2 months ago (2 children)

...well, this is a good way to shine the spotlight on a massive problem. I'd be pretty hesitant to take DIY meds unless it was life-critical and my only option (which... lots of don't have that option, and just die after hitting the health paygate...). The value here is its potential to slap some sense into the US and get our broken-as-fuck healthcare system caught up with the rest of the world so people don't need moonshine insulin or w/e in the first place.

That this conversation is even taking place is testament to how horrible our current system is.

[–] dharmacurious@slrpnk.net 0 points 2 months ago (1 children)

My first thought when I saw the headline was "Can it help me pull this tooth without it hurting so badly?"

[–] PotatoSkins@lemmy.world 0 points 2 months ago (5 children)

Honestly.. is there a practical reason why something like lidocaine isn't available to the average consumer?

[–] dharmacurious@slrpnk.net 0 points 2 months ago

I have no idea. I've got some lidocaine viscous they gave me for the pain. I'm lucky enough to have medical, just not dental. But from experience, it helps temporarily numb the surface pain, but if it's in the root, or if you're pulling the tooth, it does not help.

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[–] cm0002@lemmy.world 0 points 2 months ago

You wouldn't download a ~~car~~ life saving medicine!

[–] BartyDeCanter@lemmy.sdf.org 0 points 2 months ago (1 children)

This seems both awesome and dangerous. The two analogies that come to mind are home canning and home brewing. They’re both generally safe and easy. But every so often someone gives their family botulism.

[–] LadyAutumn@lemmy.blahaj.zone 0 points 2 months ago* (last edited 2 months ago) (1 children)

True. A lot of drugs you can perform tests on. But there is an inherent risk. I don't think making medicine at home is going to be many people's first choice. I think the people most likely to pursue this are those for whom obtaining medication other ways is not possible. When the government makes it impossible for someone to obtain health care, either due to literally making it illegal or by allowing it to become completely unaffordable for working class people, then they have to resort to other options.

With patience and diligent work it is possible to make many medications with (by comparison) significantly cheaper resources. And if someone were to do this, presumably, there are others who also have similar needs for the medications being produced. Which is how community medicine networks are formed. DIY Hormone replacement medications for trans people living in places where it's illegal for them to access medication, or otherwise extremely difficult often access medicines made through networks like that.

This isn't really a new thing, but the ease of access to documentation on how to do it certainly is new.

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[–] krelvar@lemmy.world 0 points 2 months ago

When a person has nothing left to lose they will take chances that otherwise they wouldn't. If we weren't living in a corporatocracy, perhaps there'd be no demand for this sort of thing, but we do and there is.

[–] RangerJosie@lemmy.world 0 points 2 months ago (4 children)

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.

[–] Mojave@lemmy.world 0 points 2 months ago (2 children)

Pirating movies and games can't kill you

Home brewing seizure medication can

[–] RangerJosie@lemmy.world 0 points 2 months ago (5 children)

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.

[–] grue@lemmy.world 0 points 2 months ago

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.

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[–] werefreeatlast@lemmy.world 0 points 2 months ago

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.

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[–] shortwavesurfer@lemmy.zip 0 points 2 months ago (1 children)

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.

[–] surewhynotlem@lemmy.world 0 points 2 months ago (1 children)

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.

[–] ASDraptor@lemmy.autism.place 0 points 2 months ago (1 children)

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.

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[–] werefreeatlast@lemmy.world 0 points 2 months ago

Nitro Clorox Queen 👑! For your COVID! It's better than over the counter hydrocloroqueen!

[–] thatKamGuy@sh.itjust.works 0 points 2 months ago (2 children)

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?

[–] ArchRecord@lemm.ee 0 points 2 months ago

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.

[–] Jimmycakes@lemmy.world 0 points 2 months ago

They don't have everything and especially rare mega expensive stuff that's not widely generic options

[–] LordCrom@lemmy.world 0 points 2 months ago (2 children)

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

[–] krashmo@lemmy.world 0 points 2 months ago

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.

[–] ArchRecord@lemm.ee 0 points 2 months ago

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.

[–] LadyAutumn@lemmy.blahaj.zone 0 points 2 months ago* (last edited 2 months ago) (1 children)

They have released a guide on making a CLR (basically several different pieces of lab equipment controlled to automate some of the process) and software to run on it to assist in the process of making the medications. Specifically to try and improve consistency of the medications produced.

It's a really great cause. Worth reading the article. If someone had to pay hundreds of thousands of dollars cost to access life-saving medication, and they couldn't afford it, something like this could legitimately save their life.

[–] ArchRecord@lemm.ee 0 points 2 months ago

And it's only made more inspiring by the fact that he has his own personal history with the pharmaceutical industry that didn't work for him.

I found another article on him and the collective, and there's this honestly saddening quote:

“A toast to the dead, for children with cancer and AIDS,” Laufer said, raising a glass of bourbon and quoting the hip hop artist Felipe Andres Coronel, better known as Immortal Technique. “A cure exists, and you probably could have been saved.”

It's even posted up on their page for the MicroLab right at the top.

[–] Allero@lemmy.today 0 points 2 months ago (1 children)

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!

[–] JovialMicrobial@lemm.ee 0 points 2 months ago (4 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 my disorder.

[–] Allero@lemmy.today 0 points 2 months ago* (last edited 2 months ago) (1 children)

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...

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[–] oce@jlai.lu 0 points 2 months ago (4 children)

He does mention the fact that medicine research is hard and requires money but doesn't explain how to solve that. This is a big argument of big pharma prices, they say it finances future research. I think a good example is how incredibly fast we got a COVID vaccine. It happened because private investors had massively invested in research platforms and they invested because they are expecting gains.

[–] affiliate@lemmy.world 0 points 2 months ago (1 children)

that’s not the full story though. according to the NIH, the US government spent over 30 billion dollars on the covid vaccines.

and this is not unique to the covid vaccine. here’s a source with two particularly damning quotes:

“Since the 1930s, the National Institutes of Health has invested close to $900 billion in the basic and applied research that formed both the pharmaceutical and biotechnology sectors.”

and

A 2018 study on the National Institute of Health’s (NIH) financial contributions to new drug approvals found that the agency “contributed to published research associated with every one of the 210 new drugs approved by the Food and Drug Administration from 2010–2016.” More than $100 billion in NIH funding went toward research that contributed directly or indirectly to the 210 drugs approved during that six-year period.

[–] oce@jlai.lu 0 points 2 months ago* (last edited 2 months ago) (2 children)

Ok, so we should be able to control the prices for drugs where the research has been publicly funded. But how do we avoid losing the private investors who contributed?

[–] affiliate@lemmy.world 0 points 2 months ago

well, according to the congressional budget office,

In 2023, federal subsidies for health insurance are estimated to be $1.8 trillion

and this report by research america shows that the private sector spent around $150 billion on “research and development” in 2019.

it’s no secret that the private healthcare industry jacks up the prices of things to increase profits. so, some napkin math makes me think it’s not that far-fetched to think that we can save more than $150 billion in healthcare subsidies if we stop privatized healthcare and dramatically lower the costs of medical care. we could then put that $150 billion back into research, without needing to appease the private sector at all.

[–] noli@lemmy.zip 0 points 2 months ago

Medicine still works in europe and is also being developed in europe. Maybe look at how the EU/european countries do it? A lot of it is having regulations. The free market isn't free if the choice between getting the product or not is the difference between life and death.

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[–] TheBat@lemmy.world 0 points 2 months ago (1 children)
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[–] 2pt_perversion@lemmy.world 0 points 2 months ago (4 children)

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.

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[–] bl_r@lemmy.dbzer0.com 0 points 2 months ago (4 children)

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?

[–] ShittyBeatlesFCPres@lemmy.world 0 points 2 months ago (3 children)

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.

[–] bl_r@lemmy.dbzer0.com 0 points 2 months ago

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

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