‘Right to Repair for Your Body’: The Rise of DIY, Pirated Medicine : technology

[-] smiletolerantly@awful.systems 171 points 3 months ago

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.

[-] T156@lemmy.world 31 points 3 months ago

. (Actually, it's worse than that. Ask me if you want to know. It's its own rant.)

Mind enlightening us? It could be useful to compare against, for those of us who haven't used those kinds of apps before.

[-] smiletolerantly@awful.systems 40 points 3 months ago

Sure!

The two sensors and apps of the same name I'm complaining about are the Freestyle Libre 3 and Dexcom G7. IMO, absolute bare minimum for what is required in an app of this kind is:

get the glucose level from the sensor and show it in the app, incl. a history graph (even the old dedicated handhelds did this)
play an alarm when that value is below/above a low/high glucose threshold

The Freestyle Libre 3 does this, and absolutely nothing more. They ported the software from their dedicated device to Android and called it a day. Frustratingly, this means that you don't even get your current glucose in the notification area, or the lockscreen, or anywhere else. You have to open the app. You can set the alarm thresholds arbitrarily, but only get 1 high and 1 low alarm setting. Disabling these means you need to go two levels deep into the settings menu. And you WILL be doing that, constantly. Why? Imagine this: You get woken by an alarm for high glucose. You check the app, and see that you've just barely crossed the threshold, but have been hovering below it for the past hour. You take insulin, but of course, that takes time to act. Since sensor measurements are a bit jittery, you can count on the glucose level to dip back below, then back above, below, above,... the threshold for the next 1-2 hours. The app will blare an alarm at the highest volume your phone is capable of every. single. time. Your (and potentially your partner's) sleep will be interrupted IDK how many times, unless you completely disable the alarm. Be sure to remember switching it back on in the morning, though! :) The fix would be incredibly simple: either allow muting alarms for a set period of time, or don't play an alarm if it has recently been played and the amplitude of glucose measurements is small.

On the flipside, if you miss an alarm - say you are speaking in a meeting so you swipe away the blaring alarm - you will not be reminded again. My high glucose alert is/was set rather low (150 mg/dl) because that's the point where it makes sense for me to take additional insulin. If that alarm goes off and you dismiss it, it will not go off again (unless you first dip below, as discussed). Doesn't matter if two hours later you are at 160 or 380. Sure, it is also my responsibility, I am not denying that. But again, adding this feature would have been hugely helpful and so, so easy to implement.

Let's take a quick sidebar and talk about hardware. The Freestyle Libre 3 is an AMAZING piece of hardware. It's incredibly tiny - about two pennies stacked, both in diameter and height. Still, it sticks to your skin very well, and measures and sends your blood glucose to your phone via Bluetooth every minute for two weeks straight before the battery gives out. As if that weren't enough, it's also so well-made that in the almost two years I was using it, I did not have a single unit that was defective or ran out of battery in less than the promised two weeks. It's fantastic.

...but sending glucose info every 60 seconds is also a drain on your phone's battery, especially if your app isn't, uh, made well. Take a guess as to where this is going. Ready? Wrong, it's worse. If I would go to bed with 100% battery, I would wake up with 40% left. I needed to charge my phone 4 times a day. Since switching to the Dexcom G7 (imperfect as it is - we will get to it, I promise), that is back down to once a day.

Apart from draining the battery, the app is also slow, and gets really slow the longer you have it installed. This mainly shows itself in the glucose graph being slower to render over time. Deleting the apps data, i.e. starting fresh, makes everything run reasonably fast again. Over the course of a couple of months, a couple hundreds of megabytes of app data accrues, and the app starts to crawl instead of run.

The next part is pure conjecture on my part, but I am still going to share it. My theory is that every time you open the app, the entire graph history is computed from scratch. That would explain the amount of data <-> slowness relation, and probably at least partially account for the battery drain.

In short: Freestyle Libre 3 (the hardware) is fantastic, Freestyle Libre 3 (the app) does the bare minimum and sucks at it.

You can not use it with xdrip+, except by installing a cracked version of the original which exposes the current glucose level through a webserver on your phone, and an additional app which grabs the values from there and passes them on to xdrip+. This is error-prone and does not exactly help with the battery drain.

On to the Dexcom G7. In the next comment, because apparently there's a 10k character limit on comments.

[-] smiletolerantly@awful.systems 30 points 3 months ago

The app is genuinely better in many ways. It at least allows you to set two thresholds for low/high each, and it does repeat them after a while. At least as far as I remember, it is also better with the "jittering re-triggers alarms" thing. Back when I was using it, you could not mute alarms in advance, but apparently that does work now for up to 6 hours, good on them. BUt this is my rant, so I am ignoring that :D There's still "nice to have" features missing, for example "if you are trending up, don't repeat a low glucose warning" and vice versa, but my initial impression was that this might actually work. (The Libre 3 had gotten so bad that I had disabled all alarms permanently for multiple months, so when the G7 came out I immediately switched, but at that point xdrip+ did not support it yet.)

Except - you cannot disable the "very low" alarm, and you can set its threshold no lower than 55 mg/dl. Big deal, I mean, it's important to be warned, right? Except in many situations, I know more than the app. Imagine this: You are woken at night by your low glucose alarm, and are trending down. These sensors lag by about 15 minutes compared to blood measurements, so even if you drink some juice right now, and KNOW that that will be enough, the "very low" alarm will DEFINITELY still go off. You know, eventually. Maybe in 15 minutes, maybe in 20 or 25. But you will be woken again, and all you can do is try to stay awake until then, or turn your phone off completely (why not just mute the app, you ask? Well, I answer, because the Dexcom G7 app will STOP SHOWING YOU YOUR GLUCOSE LEVELS if you do that, warning you instead that you must let it warn you. It's great! /s). Of course, turning your phone off means you won't get any more alarms until you switch it back on in the morning.

Before I end this rant, I need to mention a couple more things. The first is how patronizing Dexcom is towards its customers. Not being able to disable an alarm is one example, but my "favorite" example is this: I had been using their app for a while, and went on holidays abroad. During that trip, my sensor expired (I knew in advance and brought spares). Imagine by AMAZEMENT when I discovered that the app would not let me start a new sensor because my GPS location was not IN MY COUNTRY OF RESIDENCE.

Luckily at this point I discovered that xdrip+ had just released experimental support for the G7, and switched immediately and without problems.

In a similar vein, the app is actually only supported on a handful of devices from the biggest phone companies. There's a community project from at least the days of the G5 which removes this restriction, and the app does actually run perfectly on basically any phone, you just aren't allowed to, I guess.

Let's close this with a look at the hardware. Where Dexcom is moderately ahead of Freestyle in terms of software, they severely lack behind it in hardware. And I get it, this can be hard. They measure every 4 minutes (which is more than enough IMO), and the sensor is a good bit chunkier, yet it only lasts 10 days. Also their adhesive sucks. To this day, you need to put on the giant bandage-patch-thing they include in the box, and even then it's easy to rip off. They've gone through at least 4 adhesive variations, and all of them suck in different ways. But again, I think this is forgivable; the Freestyle Libre 3 is a miracle in terms of hardware, so whatever.

What is NOT forgivable however is making your big-ass, shittily-sticking-to-skin sensor RUBBERIZED and have SHARP, DOWNWARDS POINTING OVERHANGS THAT WILL SNATCH ON EVERY PIECE OF FABRIC IT CAN GET ITS HANDS ON AND RIP OFF IMMEDIATELY.

Why?? Why do this, Dexcom? Why did no one go "actually, only the should-stick-to-skin side of the should-not-stick-to-anything-else thing should be sticky"??????

OK, right. But as long as they send spares and make RMAs easy, it should not matter that - WRONG. THEY DON'T. Worse, actually, but for this I have to circle back to the Freestyle.

I mentioned earlier that I had never had a defective unit, and that is true. But once (once) in two years I accidentally ripped one from my arm. I was low on sensors at the time, so I called them. The call went through immediately, and the guy on the end was super apologetic, even though I was also super apologetic for ripping it off and being late with renewing my subscription, hence being low on sensors. He immediately told me they'd be sending two replacements, just in case, free of charge. They arrived the next day. (Actually, they always sent at least two spares with the quarterly delivery, too.)

Back to Dexcom. As mentioned, I started using it very shortly after the G7 came to market. That was a mistake. For the first NINE MONTHS, SIXTY PERCENT OF SENSORS I GOT FROM THEM WERE DEFECTIVE, with 80% of those being dead on arrival, and NOT including sensors that ripped off due to shit adhesive.

I have a day in my log from May 2022 where I put 5 sensors on in a row (they do prick pretty badly, btw), waiting for the warmup period to end for each of them just to read "Sensor defective". The 6th one finally worked. By this time I had given up on putting the extra adhesive sticker on, since rubbing them off is also a pain because they shred instead of coming off in one piece. So of course, it snagged on my shirt and ripped off within an hour. I cried that day, and I will not apologize for it.

"Hold on, your log? Why do you have that?" I hear the attentive reader asking. Well, let me tell you. Dexcom G7 sensors last 10 days, and the year lasts 365 days. Every 90 days you get your quarterly delivery of 9 sensors, except for Q4, where it's 10. There are NO spares. When you want to RMA a defective sensor, you have to

find their pretty hidden support page online
fill out a questionnaire for every single sensor, including three separate sensor ID numbers (which are either on the sensor applicator or its box, not both, so better keep both), all of your personal info EVEN THOUGH I ALREADY AM LOGGED IN AND YOU HAVE ALL MY INFO DEXCOM, rather leading questions speaking to exactly what YOU were doing wrong when the sensor failed, as well as the date you applied the sensor on and the date it failed.
a couple of days later you will get a phone call (better hope you hear your phone ringing, they won't be calling again, and calling them is a two-hour wait!), and a tired service rep will go through ALL of that info you spent half an hour inputting AGAIN. Then, they will calculate how many days were left on each sensor, sum all of them up, then divide by 10 days and send you not a single sensor more than required. 60% of those would inevitably fail again, and the cycle would begin anew. (Also, the first rep I ever had on the phone scolded me and told me too many RMAs would put me on their watchlist. Fuck you, Dexcom.)

....

Oh god this has gotten out of hand, I'm sorry to whoever read all of that.

TL;DR:

Fuck whoever is in charge of Freestyle's software team, fuck ALL of Dexcom, but especially the product designer who I'm sure will LOVE my idea for a rubberized dildo with snaggy edges.
Use open source software with medical devices.
Please mommy EU whip medical companies into compliance.

[-] akwd169@sh.itjust.works 14 points 3 months ago

Wow, the sheer hostility towards customers on display when your guaranteed business for life...

Just because they know diabetics have to use them is not a reason to be a scumbag company wherever possible.

Why is it permitted in our society to walk all over diabetics as if they are second class citizens???

Sounds like they treat you like a cash cow and not a patient in need of medical support, and I'm really sorry for that

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[-] havocpants@lemm.ee 16 points 3 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.

[-] captainlezbian@lemmy.world 15 points 3 months ago

That fucking sucks, and as someone who wears hearing aids it’s very relatable. Hearing aids are an investment that last about 5-10 years. As a teenager I got some demo units, then when I absolutely couldn’t keep them working anymore about a decade later and had the money I upgraded them.

In practical terms this is about 15 years of advancement, and it shows. Gone are the days of molds of your ear, replaced by little domes that rest in the canal. But more relevant to the story, you used to have about a week per battery, and very little tech beyond some computation, volume adjustment, phone mode, etc. To turn them off you’d take out the battery.

My current ones didn’t have options for removable batteries, only rechargeable, nor for if you have Bluetooth. You can control volume on the device and that’s it, the rest is in an app. Now overall this has been better than I thought it would be. Tv gets beamed into my ears, as do phone calls. My batteries never die unexpectedly.

However, I hate that app. Partly it’s having to pull out my personal phone at my desk to turn my ears off (open offices are the root problem but sometimes I just can’t do sound at the moment, a common experience for the hard of hearing). I also dislike how there’s no custom naming for modes (meeting mode is called church mode because hearing aid manufacturers don’t understand that not all deaf people are elderly).

But mostly it’s the damn Bluetooth, that wonderful terrible Bluetooth. There is no “search for new devices” option, it happens automatically when removing from the dock/charger as part of turning on. But worse than that there’s no “forget device” option. And any time a device sends messages to the hearing aids it prioritizes most recent. This is a dangerous combination with apartment living. It’s unlikely to go bad, but for me it did and holy hell it was frustrating to have less control over my medical devices than headphones. I couldn’t wear my hearing aids at home until my audiologist got in contact with the manufacturer and reset the devices because randomly my tv, audiobook, or amplification of my wife’s voice would cut to my neighbors device where they were clearly frustrated because they’d be turning it off and on and I’d be swapping my device in app and it’d get switched back as new device tries talking… It was clear that the designers were too afraid of the users breaking things by having control to allow us to fix things that “just worked” their way into a real problem. And if I weren’t a technologically skilled young woman I probably wouldn’t have been able to sufficiently describe the problem to get it solved

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[-] bl_r@lemmy.dbzer0.com 132 points 3 months ago

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 63 points 3 months ago* (last edited 3 months ago)

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 NIH 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.

Edit: I originally had NHS instead of NIH but the NHS, is, obviously, where British people get their brain medicines.

[-] bl_r@lemmy.dbzer0.com 27 points 3 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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[-] RangerJosie@lemmy.world 100 points 3 months ago

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 41 points 3 months ago

Pirating movies and games can't kill you

Home brewing seizure medication can

[-] RangerJosie@lemmy.world 65 points 3 months ago* (last edited 3 months ago)

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 happily 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 14 points 3 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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[-] TheBat@lemmy.world 79 points 3 months ago

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[-] captainlezbian@lemmy.world 72 points 3 months ago

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

[-] bane_killgrind@slrpnk.net 23 points 3 months ago

Compounding pharmacies should not be subjected to patents. Then the costs are all local instead of tithes to the corporate clergy.

[-] UnderpantsWeevil@lemmy.world 18 points 3 months ago

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.

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[-] Sterile_Technique@lemmy.world 64 points 3 months ago

...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.

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[-] 2pt_perversion@lemmy.world 52 points 3 months ago

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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[-] LadyAutumn@lemmy.blahaj.zone 47 points 3 months ago* (last edited 3 months ago)

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 24 points 3 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.

[-] flicker@lemmy.world 45 points 3 months ago

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.

[-] flicker@lemmy.world 13 points 3 months ago

Oh, also I have an exceedingly rare hereditary disease, so it feels like a certainty I'll need it for myself someday.

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[-] BartyDeCanter@lemmy.sdf.org 38 points 3 months ago

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 21 points 3 months ago* (last edited 3 months ago)

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 certainly is.

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[-] etchinghillside@reddthat.com 25 points 3 months ago

With the same risk to blindness as moonshine?

[-] HungryJerboa@lemmy.ca 61 points 3 months ago

If you're going to die because you can't afford it, then does the risk really matter?

[-] thefartographer@lemm.ee 19 points 3 months ago

And when you do die, you won't see it coming!

[-] katja@lemmy.blahaj.zone 13 points 3 months ago

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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[-] shortwavesurfer@lemmy.zip 22 points 3 months ago

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.

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[-] MerchantsOfMisery@lemmy.ml 21 points 3 months ago

Four Thieves are legit. Controversial but they're confronting a lot of uncomfortable truths that need to be addressed .

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[-] catch22@programming.dev 20 points 3 months ago* (last edited 3 months ago)

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

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[-] ayyy@sh.itjust.works 20 points 3 months ago

Haha that name is fantastic! It’s a riff on the best selling vinegar that you get at Costco and similar places called “Four Monks” vinegar.

[-] Hugin@lemmy.world 16 points 3 months ago* (last edited 3 months ago)

Actually it's the name for a mix of vinegar, garlic, and herbs that was a home remedy to help prevent the plague.

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[-] cm0002@lemmy.world 20 points 3 months ago

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

[-] EarthShipTechIntern@lemm.ee 19 points 3 months ago

Hail Four Thieves Vinegar Collective!

More DIY, right to repair, open source living.

[-] Allero@lemmy.today 17 points 3 months ago

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 13 points 3 months ago* (last edited 3 months ago)

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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[-] krelvar@lemmy.world 17 points 3 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.

[-] Quereller@lemmy.one 14 points 3 months ago

Man, I would be so worried about impurities and side reactions. A good example is the recalls of drugs because of nitrosamine contamination. If stuff like this already happens to the experts.

And what is with the whole galenics side? How to make sure the absorption is about right...

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