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.
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.
My wife is T1 too and I wholeheartedly agree. The development in that area is outrageously slow and locked down (and then there’s healthcare providers with whom you have to fight tooth and nails to get your ancient pump upgraded - another story and country-specific).
. (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.
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.
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.
Jesus Christ that sucks nuts… Hopefully in the future the situation improves. Iirc this technology is still early and companies are incompetent
Thanks lol. The thing is, they’re getting away with this. Forcing Freestyle to open their protocol would instantly solve all of those problems, as you could use good hardware with good software, since you’d no longer be locked in.
As a G6 and xdrip user, this absolutely mirrors my experience, and MANY of my frustrations. The fact dexcom’s app won’t give me a delta between current and last reading to understand how quickly im trending? Insanity - and they show no interest in making it better in any way, which really grinds my gears every time I give them money.
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
Can xdrip control the dispensing of medicine or just do monitoring and alerting?
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
You just described every problem I’ve ever had with my Bluetooth headphones… I’m just about ready to throw them out because I take meetings constantly, and somehow my headphones are never connected to the right thing…
I hate Bluetooth with a passion, and I’m so sorry you have to deal with that for your hearing aid.
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.
Hope John Green is aware of this. He’s fighting tuberculosis globally!
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.
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.
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…
If stuff like this already happens to the experts.
Keep in mind that almost all drugs are made in India. There is a huge issue with corporate corruption as well as poverty wages that prevent workers from ever whistleblowing. It’s a disastrous combination. It’s frankly a miracle that things don’t go wrong more often.
The corruption runs so deep that pharmaceutical factories keep exploding and wiping out whole towns every few years.
With the same risk to blindness as moonshine?
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.
And use copper pot still with silver solder.
If you’re going to die because you can’t afford it, then does the risk really matter?
And when you do die, you won’t see it coming!
That was due to additives to ethanol cleaning agents - it was a thing done on purpose
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.
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.
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
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?
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.
