While I can appreciate some of the intent to make certain healthcare more accessible, it is never a good idea to have anyone inexperienced attempt to perform some of the reactions required to synthesize medicines. This should always be done by experienced individuals with quality reagents and the proper lab equipment. While it might be easy to substitute a mason jar for a proper glass reaction vessel it is not so simple to find a substitute for a gas chromatograph/mass spectrometer in the back of your pantry.
IMO, The test equipment required to analyze the results of the reactions is generally most cost prohibitive aspect of this type of 'research'. And this is where I have a problem with these guys: I don't see any plans available for building any of that. Building many of these devices is not out of reach for a skilled individual, and it makes more sense to me that this equipment should more readily accessible than a glorified Keurig machine for drugs. This kind of arrogance and lack of respect for the discipline required in organic chemistry is going to result is someone getting hurt.
My relative is a chemistry professor who used to manage a mass spectrometry lab. Pharmaceutical companies sent them samples when something went wrong. They have their own spectrometers but interpreting wrong results is not always easy.
Sometimes it included some cool detective work. In one case they were able to track the contamination down to post packaging. A component of the sticker glue diffused through the wall of the plastic bottle and contaminated the stuff contained therein.
So except for an excuse to tell this story my point is that maybe you can outsource the analysis. I admit I haven't checked if the labs accept samples from random people. In theory that should be possible.
>. This should always be done by experienced individuals with quality reagents and the proper lab equipment.
Naaa.
Same with prescription meds, open it up!
Isn't that how we found a drug for a Parkinson's mouse model? [https://en.wikipedia.org/wiki/MPTP]
Big brother's job is not to control and ban certain behavior. California thinks this way and aggressively enumerates every possible bad thing they can conceive of and making it illegal. As if slipping on a banana peel were illegal. It's borderline insane, like why not make getting sick illegal or being poor illegal, why not make changing lanes without a turn signal illegal. Ethically as long as the instructions say, "do this wrong and you'll die, it's a garage door spring" people will know. Or "take this medicine, but if you don't check your liver/kidney/clotting you may well die". In big bright red letters.
Don't make it impossible to do freely. Just make it impossible to do without reading and agreeing to the fact that you understand the big red letters. Understand the risks. Medicine is all about patient autonomy and this is the opposite.
> why not make changing lanes without a turn signal illegal.
Funny you should say that, the California Vehicle Code (CVC) Section 22108 requires drivers to signal for at least 100 feet before making a lane change or turn. The fine is $240.
I don't understand why they even bother reinventing the wheel. Biotech and lab techs aren't being paid FAANG salaries. They are hardly more expensive than minimum wage employees. Just hire some and get them to do the actual experiments.
Many have their hands tied. In the biopharma industry, there are strict NDAs and well enforced noncompetes that make it hard to move throughout the industry and sometimes even talk about the work.
I work today with someone who interned with Gilead. According to him, his NDA lasts until 2099 and covers "Anything and everything said, heard, seen, imagined or done" while under their employ that hasn't been made 100% public. His resume has just one line entry: "Intern, lab tech. Details NDA."
I work for a competitor for Gilead and we certainly don't apply these sorts of constraints on our interns. I just worked on a recommendation letter that describes his work in detail (while not containing anything truly proprietary).
Get rid of patent law and government regulations and then no one will need to roll their own medicine, because everything will be very inexpensive and high quality.
Just seeing this for the first time, and I love the hacker ethos displayed here. Obviously there are Risks Involved especially for health care, but I appreciate the well-researched and documented reasoning behind their solutions. Let the people control their own lives a bit more.
To me, the hacker mentality has, at its root, been about more about shortcutting red tape and discarding the guardrails the gov't put in place "for your own good". Often that comes hand in hand with rule breaking and illegal actions.
But since healthcare has been so fully co-opted by moneyed interests it is good to see things like this and "medical vacations" grow in popularity - not because they are great solutions but because they underline how thoroughly the current system has screwed the pooch and will hopefully lead to real change.
And I know someone who went to Mexico to get unapproved stem cell therapies when US doctors said he'd never walk again and now he's walking just fine. Anecdotes are just random stories you hear along the way.
The point being: there's already a right to try unapproved therapies, even if it sometimes requires extra travel. People who aren't wealthy manage to try them.
As for "anecdotes" -- do you have any actual data? Neither do I.
I can't quite discern the subtext here but I will say that for many people international travel is not an appropriate solution for access to health care. People who are elderly, very sick, or without a passport, travel could be infeasible.
And beyond the logistical challenges, I think it should be fair to say axiomatically that international travel is not an adequate solution to healthcare access.
as for "travel could be infeasible" : I'd suggest you call up some clinic in Mexico and pretend to be terminal and unable to travel. See if they come up with some solution for you.
That makes as much sense as saying "marijuana is already legalized in the US - you just need to buy a plane ticket to Amsterdam". The whole point of having your rights in certain jurisdiction is that you didn't have to flee that jurisdiction to exercise the rights.
> Are you an unlawful user of, or addicted to, marijuana or any depressant, stimulant, narcotic drug, or any other controlled substance? Warning: The use or possession of marijuana remains unlawful under Federal law regardless of whether it has been legalized or decriminalized for medicinal or recreational purposes in the state where you reside.
We have state police doing literal highway robberies and stealing cash from state legal businesses.
No need to be condescending. Yes, I know about it - I know it only appeared recently in 2018 too. And also you have to be literally dying to use it. If you're not dying yet - but may be severely disabled, in tremendous pain, or otherwise suffering greatly, but if you're not nearly dead yet - no right to try for you.
> Marijuana IS pretty much legalized in the US.
"Pretty much" does a lot of work here given it's still Schedule I on federal level.
If your point is that people who aren't wealthy have a right to try unapproved therapies, why throw in the quip about Mexican healthcare killing people, and in such a way as to make it sound like that's the expected outcome? You could have just left off the parenthetical and left it at that.
The trick, and a lot of people are bad at this, is knowing/understanding whether the treatment is likely to help, but is banned/unapproved because it's too new, has bad side effects, or doesn't actually work. Mexico isn't likely to have better cancer treatments than the US, but something like stem cell treatments are just not approved yet because of regulatory hurdles, not because they aren't liable to not help.
> more about shortcutting red tape and discarding the guardrails the gov't put in place "for your own good".
Well, this really is for the good of the vast majority of people. The problem is that this also applies to a minority of people, who have the skills to research thing and make educated decisions about things.
It's not a bad general rule, but maybe it should be overridable in certain circumstances, e.g. when you are experimenting on yourself.
I'm not a big fan of getting dental work done, much less "DIY home dental" so was pretty skeptical of what they could possibly be doing and was really pleasantly surprised by their tooth seal instructions.
They're taking a somewhat well-known cavity prevention and enamel remineralization treatment that has the unfortunate side effect of turning your teeth black and replicating steps from a study to avoid that.
Saw these guys talk at DEFCON this year, absolutely fantastic presentation. It was so powerful and important that I'd actually recommend watching it before pretty much everything else from the con.
It’s in ChemHacktica buyables afaict which looks similar to askcos MIT. Played around with it, the products I looked up would be extraordinarily expensive. Guess that’s not a surprise if you are buying 10mg of XYZ at a time vs the “100 tons” they probably buy for labs in China.
Haven’t watched video yet, besides being fun what is the use of this? I see in the defcon video a mention of hep c treatment which , last I heard was something 50,000 usd (looking it up ranges 23k-80k) so I guess that makes sense vs trying to make bathtub antibiotics and steroids.
There is a group that is producing medication that has yet to hit the market for self use. Someone got a hold of a patent, found a chemist and a lab willing to test the substance.
I'm waiting for the actual medication to hit the market but if the FDA approval takes a long time, I will make the med myself. The substance in the medication has been used orally for a long time with a good safety profile and it was discovered that it can help regenerate nerves.
Maybe I made all of this up to sound cool on the internet. If you know what I mean.
The FDA does not take information from other countries into account much. EDIT: Foreign approval and use history can be supportive information in an FDA review process, but are not determinative factors for U.S. approval.
For example, Promethazine has been popular in the UK for a very long time (ingredient in UK Sominex), but its not approved in the U.S. as a sleep aid.
The issue is that foreign approval and use history are not allowed to be determinative factors for U.S. approval in an FDA review process, but rather as supportive information only.
I remember a blog post of an MD or psychologist about Russian/Soviet psychotropic drugs that are not used or unknown in the west and used as an analogy that if Russia had found new elements in the periodic table, and we would not use them.
It might be worth considering that until very recently, Russia's military was definitely supremely capable and on-par with NATO.
Russia lies. About everything. And culturally Russians have been immersed in a narrative that they're the absolute best in the world at everything, that all good ideas were originally Russian ideas (see how the narrative of LK-99 started getting modified before anything was verified).
So do they have processes or techniques not used in the West? Sure it's possible: but it's also far more likely that the reason we don't use them is that the actual investigation of their effectiveness can't reproduce the results.
Because no one looks up the clinical studies: they just repeat the fun narrative about big mysterious super-technology from behind the Iron Curtain. Which itself was essentially an invention of interest groups looking for funding in the West (i.e. there's was never a "missile gap" the US was going to lose).
Like as noted here: you remember the story, but not any actual specific drugs or processes? Why?
> but it's also far more likely that the reason we don't use them is that the actual investigation of their effectiveness can't reproduce the results.
Or, passing a novel approach through FDA, who are previously not familiar with it, is so prohibitively expensive that nobody wants to invest in it. And since it already has prior art, it's probably also not patentable so you can't even get back the money after you get the approval. Unless such drug can make billions as generic - which is quite rare - there's no point in investing in it, even if it works.
"It might be worth considering that until very recently, Russia's military was definitely supremely capable and on-par with NATO."
I think Russia was not on-par with NATO after it collapse, at least not in conventional warfare. They missed the electronic revolution in warfare (See US-IRAQ Gulf War I). But they are now back on par, possibly better. Their jamming, air defense and rockets are top-notch, possible better than NATOs. They can disrupt our GPS System, we can't disrupt theirs since it is much younger, speak better.
As a comparison: Germany had 3000 tanks during the cold war. Now they have 300, 200 operational. Russia looses so many tanks every month, and actually builds 100-200 new ones every month. Germany had ammunition for two days of warfare. After they gave some to Ukraine, they have ammunition for one day left.
Russia has been underestimated. They are back and their future looks pretty good, even with a dubious leader. They won their war:
They have energy, they are not overpopulated, they have fewer problems with immigration. In fact, they're even looking for immigrants: https://movingtorussia.ru/ru
In Germany too. Without Russian Energy their manufacturing heavy country will deindustrialize.
At the same time, Russia is actively trying to replace the US Dollar as the world reserve currency, together with BRICS+. If successful, this will have a tremendous impact on the US.
I am not a Putin troll, and I hope that I am wrong. But the future has the nasty habit of taking unexpected turns.
> As a comparison: Germany had 3000 tanks during the cold war. Now they have 300, 200 operational. Russia looses so many tanks every month, and actually builds 100-200 new ones every month.
New production is 10 tanks a month at best, which is indeed how many Ukraine destroys sometimes in a day. The rest are refurbishments of rapidly declining USSR's stock without anything to replace it. I think it would be appropriate to call it Soviet Union's last stand.
> But they are now back on par, possibly better. Their jamming, air defense and rockets are top-notch, possible better than NATOs.
That is a wild stretch considering that Russian navy has run away from Crimea at the risk of getting sunk in entirety, Russian air force cannot come even within a hundred kilometers of Crimea without getting shot down, and ground forces are regularly hammered by drone and missile strikes, all while Ukraine has less of everything and is under severe restrictions what it can do with military aid provided to them. I cannot imagine any major NATO country in such a poor position that they cannot fly airplanes over the territory they hold. Claiming victory in such position - as you do - would be downright ridiculous.
Russia doesn't produce any new tanks, not since the dozen or so T-14s. Remanufactured T-90s are probably close to 10/month while refurbishing t55 and t62 are at 100-200/month.
They have not "won the war". Not by any stretch. That's just a pundit's plainly ideology-driven projection.
The fact that this author chose to call their book The Defeat of the West, and that its main thesis is that this defeat is due to the “vaporisation of Protestantism" should give one serious pause.
Perhaps not the best source to turn to for a serious, impartial military analysis.
"Perhaps not the best source to turn to for a serious, impartial military analysis."
Fair point. But it is from Emmanuel Todd. Who the f. is Emmanuel Todd?
"Todd attracted attention in 1976 when, at age 25, he predicted the fall of the Soviet Union, based on indicators such as increasing infant mortality rates: La chute finale: Essais sur la décomposition de la sphère Soviétique (The Final Fall: An Essay on the Decomposition of the Soviet Sphere)."
It doesn't matter who he is, or what he said when he was 25.
His perspective this time around is plainly warped, and his analysis is just as plainly flawed, given the current reality of what's happening on the ground in Ukraine. You can tell that all by yourself, without having to take some supposed visionary's word for it.
That's what happens when people get lucky early in their careers. Sadly, it tends to go to their head.
What’s currently going on in Ukraine is they are slowly losing a war of attrition that eventually their allies will lose interest in funding.
We don’t have to like that outcome to see that it’s inevitable and has been from the very start.
One entirely possible outcome I haven’t seen discussed much is Poland turning on the Ukrainian rump state once Russia finishes annexing the ethnic Russian east.
The current situation can only be regarded as a stalemate. In the service to which Russia is devoting 10 percent of its GDP, while Western countries are spending 1 percent.
We don’t have to like that outcome to see that it’s inevitable and has been from the very start.
It's not at all inevitable. Russia has lost many of its optional wars of aggression and foreign intervention, in the past.
Putin will also be dead or starting to lose his marbles in a few years, and Russia's overall prospects for stability (even if there were no war at all) do not look particularly good after that.
> At the same time, Russia is actively trying to replace the US Dollar as the world reserve currency, together with BRICS+. If successful, this will have a tremendous impact on the US.
Weird analogy. The USSR/Russia did discover new elements, and while there was a certain amount of arguing over names (as it wasn't always clear who discovered them first), there was no "not using" them because they were Russian. That isn't how science works.
That’s the point of the analogy. Even though scientists in the USSR discovered certain elements, the US did not refuse to “use” them. But for pharmaceutical compounds like bromantane, this isn’t the case. An anxiolytic stimulant discovered and approved in Russia, it cannot be prescribed in the US.
"In 1996, it was encountered as a doping agent in the 1996 Summer Olympics when several Russian athletes tested positive for it, and was subsequently placed on the World Anti-Doping Agency banned list in 1997 as a stimulant and masking agent.[10][42]"
who cares what a blog post of an MD or psychologist says? If a new element had use, of course we would use it. Are you seriously telling me that if they discovered copper, we won't use copper?
It doesn't look like FDA - or, specifically, Frances Oldham Kelsey - had any data or any evidence to suspect something was wrong with thalidomide. Partly it was because the manufacturers hid whatever suspicious data they had, but Kelsey had no way of knowing it - she basically just run out the clock until it so happened that the news about birth defects caused by it started coming in. That seems to have validated the idea that the strategy should be "delay approval as long as possible and request more and more tests for as long as possible". Which, of course, technically makes it safer for the drugs that manage to pass - but the cost is hugely inflated costs and absence of access to many drugs.
The "Five Eyes" countries are the United States, Canada, the UK, New Zealand, and Australia.
Of the four countries that aren't the US, I'm sure that all have regulatory safety standards that would satisfy the safety and efficacy expectations of the American public.
It's still prescribed in the US for other uses though. I fucked up once and took one as an antiemetic, forgetting it was a sedative... right before I had an important meeting. Lesson learned :P
But for that kind of thing it would seem to be much easier and probably cheaper just to mail order the drug from overseas, or even book an inexpensive flight and buy some. For example, bromhexine and ambroxol are cold remedies that many people find effective, are not available in the US, but are easy to mail order from any number of Japanese sellers. The difficulty of hiring a lab or setting one up yourself would seem to be worthwhile only for new or unusual medicines that could not be obtained this way.
We've always had the right to repair our body. We've just not always had the tools. My personal view on this is rather to opensource the tools like ultrasound, MRI, heart monitor, etc. This would give the people the tools to help diagnose issues without needing a doctor involved. It is taking a year just to see a doctor.
As much as I'd love a long-term solution to dental cavities, I'm leery of any treatment using silver nanoparticles, which can cross the blood brain barrier and accumulate in the brain, where they've been shown (in mice and in human models) to contribute to neurodegenerative diseases.
This just feels like drug dealing with a far more benevolent motivation. I agree that it should ultimately be up to the person but there's a lot of ways this could go wrong.
Remember, you're putting these substances in your body. Make damned sure you trust the person you got them from. Like, "I would trust you to raise my child in the event of my death" levels of trust.
If you're a woman in the US, doctors will sooner call your issues anxiety and throw Xanax at you than to try to help you figure out the causes. Sometimes they'll even get mad at you if you don't want to take Xanax and suggest you're mentally unfit.
I’m not a woman and it wasn’t Xanax, but Ativan was a miracle drug that cured many physical symptoms for me. Doctors follow an algorithm where they look for common stuff first (“when you hear hoof beats…”), and anxiety is very common; I believe more so amongst women.
My wife is currently dealing with a kidney stone that is filling her entire kidney. Major surgery incoming. She started having them check it a year ago.
When advocating for herself, the male doctors either a) seemed to believe she was making it up and attributed it literally to her monthly cycle, or b) suggested it was anxiety.
I'm sort of in the camp that doctors absolutely poopoo women's problems.
It happens for men, too. Anyone with problems that don't produce obviously incorrect lab values or gross physical symptoms, unless it's in the top 10 or 20 most common illnesses, good luck with that. Even if your lab values are off, but "not enough", getting anyone to do something about them is heroic effort, and when you're already ill, it's a farce.
The alternative is to not visit a doctor of any sort. You might take that further and not visit a mechanic. Medical practitioners are not perfect. I trust they are doing their job and they can get it wrong. Medicine is not easy. People have to advocate for themselves if they don't think the doctor got it right.
Well that's the point of DIY medicine, empowering people like yourself to make your own PCP. Of course you trust it more than the PCP from that guy in Midtown.
I think that the intended use case is people who otherwise wouldn't be able to access important drugs. In that sense, I suppose that some people might consider it worth the risk.
A lot of the criticism I'm seeing isn't balanced against the fact that a huge number of people die every day (in developed nations including mine) because of their inability to pay has hindered their access to medications and procedures.
Question from a non chemist: Ok so you do some chemistry and produce a vial of supposed medicine, how do you tell that you didn't fuck up and produce something toxic? I guess a modern lab would just stick the result in a gas chromatograph or something but you're not going to have one at home.
I vaguely recall (from, er, Sherlock Holmes) that old school analytic chemistry could figure out what an unknown chemical with cheap reactions and tests, but does anyone even know how to do that any more? Is it automatable?
I advise anyone interested in pharmaceuticals to read The Old Vegetable Neurotics: Hemlock, Opium, Belladonna and Henbane, Their Physiological Action and Therapeutical Use Alone and in Combination, from the 1860s, I think. If you read between the lines, it is the story of a doctor who is immensely frustrated with the impurities of some common medicines, not knowing what you were getting, was this the actual chemical doing the job, and so forth. He proceeds to examine each part of the plant (leaves, stems, roots, flowers, and so on) to see which gives the best concentration. He then works at extracting exactly what he wants, very carefully. Then he tests tiny amounts of various rodents, then his dog, then himself, working to determine an appropriate dosage.
It's quite impressive and hardcore. You can feel this man's annoyance at the state of things and his passion to declare, "I'd rather just find this out now instead of waiting for everyone to keep fiddling about." With a small room and some glassware you could also do this. Now, it wouldn't be simple, and to be honest the various units used are a hot mess, but the basic principles are there.
Now, automatable is a matter of degree. Real chemists have whole flowcharts of "do this, do that next, now this other thing" to detect the presence of a particular sought-for thing, but that does not prove a negative, you do not know what else might be present. That's the real rub and why the focus of so much chemistry is on extraction and purification.
The old school way was basically try a reaction, see if it matches a group of chemicals. Try another, see what you get. You can only close in on a reasonably accurate guess if what you're working on is fairly simple. Otherwise you'll be stuck in a local maxima of has this group, doesn't have that group, without the ability to get any better resolution.
Ok, so I was interested in https://fourthievesvinegar.org/tooth-seal/ Was happy that they say it's completely safe but... there's no linked study that proves it's safe. On what basis is it safe?
There's been multiple recent studies linking higher fluoride amount with reduced intelligence in children. How is that different?
The fluoride added to the drinking water in the US exposes you to many more times than using a fluoride tooth paste, so any leeching from this is likely inconsequential. There's also papers linked in the website and it appears that it's an improved version of the silver diamine fluoride treatment, which a quick search reveals is FDA approved.
it's different because the risk analysis for individual decisions is completely disparate from the risk analysis of policy decisions.
How is it connected?
Also I'd be interested in you're citation for the fluoride assertion, the last I remember that was a conspiracy theory and the actual published research was mixed and inconclusive?
> it's different because the risk analysis for individual decisions is completely disparate from the risk analysis of policy decisions.
That's true, but when doing the risk analysis for individual decisions, it helps to have actual data to make that analysis. The website says it's safe without justification to say why it's safe, how it's similar to known-safe mechanism, etc.. "Trust me bro it's safe" is not exactly confidence inducing.
> Also I'd be interested in you're citation for the fluoride assertion, the last I remember that was a conspiracy theory and the actual published research was mixed and inconclusive?
There's this recent report. This is for countries where children received fluoride exposure amounts higher than 1.5 mg fluoride/L of drinking water which is higher than what you'd get in the US.
Yep: as someone with a chemistry background, synthesis is the easy part.
Purification and analysis? That's the hard part.
Not getting screwed by additives, coatings or contamination? Thats what the big bucks in lab gear cost (i.e. a metered dispensing pump comes with a list of every element which touches the dispensed fluid).
This is interesting. The abortion section doesn't seem to mention ye olde menstrual extraction. Some decades ago, I believe the early seventies, some feminists figured out how to basically get the whole "eject the sloughed menstrual tissues" part of the cycle over with in a simple procedure, rather than enduring the days of cramps, which I know make some women quite miserable, even debilitated. This can also serve as a first trimester abortion.
"From the moment I understood the weakness of my flesh, it disgusted me. I craved the strength and certainty of steel. I aspired to the purity of the Blessed Machine.
Your kind cling to your flesh, as if it will not decay and fail you. One day the crude biomass that you call a temple will wither, and you will beg my kind to save you. But I am already saved, for the Machine is immortal…"
This is basically what was going through my mind while browsing this website ;)
Most medicine is complete bullshit, doctors have a specific set of protocols they have to follow to avoid mal practice. There is no nuance. Most pills will cause far more damage in long term dependency and side effects than they will solve. ESPECIALLY for psychiatric conditions.
Medicine mostly makes sense with broken bones and physical surgeries.
Don't even get me started on dentistry.
For years, I struggled with severe dental issues, leading to advanced gum disease. Dentists told me I’d eventually need tooth extractions or major gum surgery. I’ve always hated going to the dentist.
Two years ago, I decided to take control of my own dental care. I bought a dental scaler kit online and started removing plaque from the backs of my teeth. I learned the proper technique by watching YouTube videos and now do this about once a week. The results have been incredible—my teeth are spotless, I have no gum bleeding, and I haven’t had any cavities. I still go in once a year for a professional cleaning of harder-to-reach areas like my molars.
If you google whether you can do this, the internet is full of large WARNING YOU CANNOT SCRAPE PLAQUE OFF YOUR TEETH. Every single website is full of dentists screaming that you cant clean your own mouth. This is clearly bullshit, you can actually just scrape it off from the comfort of your own home. There's clearly some risk, but if youre an intelligent adult, you can do it.
I also have my doubts about dentist advice after seeing the dramatically positive effects a waterpik and oil pulling had on me and several other people I know. No gum problems, less sensitive teeth. Due to several moves and my laziness I didnt go to a dentist for cleaning for more than five years. Last year I went again and had zero problems. Not even much plaque.
I wonder why dentists don’t tell everybody to get a waterpik first before any other treatments.
I've actually had multiple dentists either telling me to get a waterpik or praising me for having one. That was in China (Japanese dentist though) and in France.
"Most medicine is complete bullshit, doctors have a specific set of protocols they have to follow to avoid mal practice."
I mostly agree with this. Most doctors are just reading off the Epic professional version of WebMD for most symptoms/conditions. It's especially important to do your own research and be your own advocate for any serious conditions so that you can ask the right questions, which sometimes snaps them out of the scripted response and consider other possibilities or concerns.
Many stores are being forced to pull it for that reason. The prepping community used to promote it and that caught the attention of the wrong people. One alternative are a set of doctors doing very low friction online consulting and prescribing, some even selling kits with assorted antibiotics but they are also getting pressured to stop.
I thought it let you change the price of an item lower or get free dispenses? I remember reading that! It got me interested in the code for machines and how to exploit hardware. Really good for my budding mind and future career in tech.
Only if the door were open. The 4-2-3-1, when locked, only displayed sales data. You had to pop the T-handle open and push another button to go into Service Programming to actually set prices with the front-panel buttons.
At the same time, all my local vending machines were dispensing with the old tubular locks - they all went to funky keyless remotes to unlock machines.
Healthcare in the US is terrible, sure. And making medicine more accessible is a great thing. But I feel like the term "right to repair" is being hijacked here. A manufacturer that creates a piece of technology can theoretically publish repair instructions and provide parts (at a reasonable cost). This is different than the issue of accessibility in the drug space?
Maybe I'm making a fuss over nothing, but it just stood out to me.
I agree this is a totally different thing. It definitely feels like they are trying to make use of the feelings people have about the right to repair movement for their own agenda. Some might say co-opt, others riff off of. I can see that there are some similarities, but power struggle and regulatory situations are totally different.
So what? You're still responsible for it - its nourishment and maintenance. I agree 'right to repair' seems a little off, but its a subset of 'right of self-determination', i.e. basic liberty, which from the outside looking in is preached about a lot but not very practiced in the US.
i mean we could. but it seems like you wouldnt want that since your brining it up yourself. seems very like a very easy thing to ignore since it doesnt seem any malicious. unless there are trademarks im not aware of.
If you just make a post about healthcare in the USA being awful, it's highly likely to be removed/booted off the front page. Call it a "right to repair", though, and you're hitting the sweet spot for HN.
Who is the manufacturer of the item to be repaired? How is the manufacturer preventing repair? What design decisions artificially limit repair to parties other than the manufacturer? How does the manufacturer use existing regulation (eg DMCA or copyright) to prevent repair or access to information necessary for repair.
All of these questions make sense for right to repair, and are mostly nonsensical in this case, since drug companies don’t manufacture bodies.
Essentially the instructions and tools to repair your own body are restricted and only accessible to those who can afford to pay for the health care systems processes. Have an obvious infection? Spend a ton of money going to a doctor to get a prescription to give to a pharmacy to dispense at highly marked up substance that’s easy to manufacturer at a tiny unit cost. You had no right to cure your own infection. You had to pay dozens of middle men for something straight forward.
I’d note that in most of the world you would just go buy the antibiotics directly from a pharmacy for almost nothing.
Now - I’m not saying self medicating with antibiotics is either good for you or the world, I’m saying at least in the US, you don’t have that right.
Believe me, I agree that this is a problem. I have lived in other countries, and have seen how broken certain aspects of US healthcare are especially with regards to cost. These problems are just totally different than “right to repair” if in no other way than that the legal solutions would be completely different. For example any right to repair legislation would have no bearing on drug prices.
That's some very careful cherry picking you've done there with your example. Maybe next time you're in a pharmacy you'll take a look at the aisles and aisles of over-the-counter medicines and devices available and do some thinking about your belief that "instructions and tools to repair your own body are restricted and only accessible to those who can afford to pay for the health care systems processes".
I don't understand what you're trying to say, because there are low potency options that are available over the counter, that means the most effective treatments are correctly access restricted?
Can you name an over the counter antibiotic that successfully treats a staph infection? or strep throat? or sinus infection?
I am saying his cherry-picking of antibiotics specifically while he make dramatic claims is ignoring all of the over-the-counter mediation sold in the pharmacy. There are quite a lot of illnesses one can treat without ever talking to a doctor. I don't know what other people's ratios are, but my use of OTC medication and "tools" is maybe 10x more frequent than stuff that's gatekept by a doctor.
He is also ignoring the reasons that we have ended up with this system. Some of them are kind of dumb, but some of them are about valid problems. That's very different than what "right to repair" is fighting, which is mostly about exploitative companies trying to maximize revenue at the expense of their customers.
[Edit: misunderstood who replied; correcting pronouns]
its kind of wild your trying to create sides in this fake debate and then somehow trying to side with repairing electronics over peoples health?
why though lol, do you hate sick people? or just have no empathy for people in general?
who cares about technicality and semantics and whois using whos catch phrase better... we should be discussing an issue far more important, like so much more important its funny to even compare. then being able to switch your iphone battery out.
I have no idea why you take any of that away from what I wrote. I am in favor of both repairing electronics and people's health. I'm just saying that the right-to-repair framing for medical stuff is not a great way to look at it.
What illnesses can you treat over the counter? I can’t think of a single intervention other than symptom mitigations, many of which aren’t particularly effective compared to generally safe prescription medications at even that. The only thing I can think of are bandaids and wound dressings.
Is this some sort of definition game? I'm using illness to mean "an unhealthy condition of body or mind", and treat as "to do something to improve the condition of an ill or injured person", both dictionary definitions. If you really can't think of anything that drug stores sell without prescription that qualifies, maybe try taking a stroll down the aisles sometime.
I’m saying it doesn’t map to “right to repair.” A mild anti inflammatory medicine to relieve mild headaches - ok great. But that’s not a repair of any sort. An antibiotic cures an actual illness - something that requires repair.
As I said pretty clearly I’m not saying this is right for the individual of the world, but a right to repair yourself would allow open access to medication at the lowest prices an open market can bear and medical knowledge offered a broadly accessible way for most conditions not absolutely requiring a specialist, like most surgeries or complex interventions. The amount residual is probably a lot larger than you would believe. In fact almost all medical services are routine and don’t require a specialist of any sort, not even a PA. Again, I’m framing the concept of right to repair your own body not taking a stance on whether it’s a good idea or not.
Id note in closing that in a discussion of the definition of right to repair, it’s an odd question to pose “is this a definition game?” Yes - that is the topic!
You are making up your own definition for "illness" here, so you can cherry-pick.
The whole notion of "repair" in relation to bodies doesn't make much sense. Bodies self-repair. All medicine is just aiding them in that.
And if you're not saying this is right for the individual or the world, I don't understand why either of us should waste further time on what appears to be just a game, the part of "definition game" you somehow managed to ignore even while quoting it.
In some ways, the gatekeeping of healthcare should be met with more resistance than repair an item that someone else made but you now own.
Your body is something that belongs to you, you technically manufacture, yet you are legally forbidden from applying known and often the most effective remedies to your own body if you don’t engage with a giant government-sanctioned system that can charge you whatever they want.
To top it all off, the rules are not even consistent and are motivated by reasons other than what is best for the patient.
For example, taking more than the maximum dose of Tylenol at can cause long-term or permanent liver damage. This is still available over the counter with no restrictions whatsoever.
On the other side, we can see that the DEA was created to enforce drug policy (or rather racism and classism via drug policy) which has the effect of making access difficult for many people who are prescribed scheduled substances. Yet we have a opiate crisis that managed to appear within this draconian regulatory environment.
Then we have situations like the FDA which been aware of the dangers of high sugar in diets, but the sugar industry’s dollars into “studies” managed to convince them that “dietary fat” is the problem.
The “for your own good” argument only works if they actually acted for our best interests, but time and time again, it’s shown to us that this is just a big game in which we have no say in, yet we are all subjected to.
We should have the right, as an informed human, to independently decide what we want to do to or put into our body, just as we should have the right to choose what we wish to do with our possessions.
> In some ways, the gatekeeping of healthcare should be met with more resistance than repair an item that someone else made but you now own.
That is never the case. Humans are very risk averse and risk of broken product is infinitely smaller than risk of screwing up with your health.
That's how we ended up with the straightjacket system. Rachet goes only one way, there is a crisis (e.g. thalidomide in 70s, snake oil salesmen and so on), we rachet it up to ensure confidence.
The consequences of a single case of problem have a decade long consequences. E.g. baby formula was contamined in China (wiki "2008 Chinese milk scandal"), 300k were sick, six children died. Baby formula is not trusted even a decade and half later and imported stuff is used.
> Who is the manufacturer of the item to be repaired?
This isn't important to the point, but for the sake of argument; lets say society is the manufacturer.
> How is the manufacturer preventing repair?
Local legal regulatory groups that deem some method of fixing (treating) some defect (health condition) too dangerous to allow.
> What design decisions artificially limit repair to parties other than the manufacturer?
Company (local agency) wont allow my neighborhood repair shop to buy (or make) replacement screens (medications) or batteries (contact lenses).
> How does the manufacturer use existing regulation (eg DMCA or copyright) to prevent repair or access to information necessary for repair.
Existing is a stretch considering the age of the DMCA. But drug scheduling in the US is an equivalent and equally nonsensical application of logic for example.
> All of these questions make sense for right to repair,
I know how to fix it, but because of laws and regulations and decisions outside my control, I'm unable to apply that knowledge.
> and are mostly nonsensical in this case, since drug companies don’t manufacture bodies.
The DMCA is your own example, and it's a law built and advocated to enable control, and reduce supply artificially.
There's definitely a point to be made and a discussion to be had about the origins for control over health and medical issues. I think permitting the sale of snake oil is harmful to society, and we should prevent it so people don't have to become experts in human biology to not get conned. But treating chronic health conditions shouldn't be as hard as it is.
The core of right to repair, is you shouldn't be allowed to prevent me from, or make it and possibly difficult for me to improve something I own and control. I think saying I own and control my body and health is a fair assertion, so the same argument applies; it's wrong to make accessing repair options for my health as hard as it is if I'm willing to try to fix it.
I'd say the same concepts behind right to repair apply more so to the body because I can't just replace it.
I am legitimately unsure why you felt the need to make this comment.
If you were uncomfortable posting this it here because you think that someone else might take it an endorsement, then why did you post it? People post things they find interesting and disagree with all the time. What are you afraid of?
I didn't necessarily get the same impression from the comment thread that you did, given that there are a range of responses. But I will say that the idea of intermingling the ethos of Right to Repair with the ethos of Self-ownership[1] is one of the most decidedly "hacker" novel ideas I've encountered on Hacker News and I don't have words for the joy I experienced browsing the submission.
Many hackers are now old enough to have reflected on dystopian science-fiction and come to the conclusion regulations are useful, sometimes. And many hackers realise most people are ignorant most of the time, us included, and do not trust amateurs to have all of sufficient knowledge, thoroughness, and benevolent intentions to manufacture powerful stuff you put inside you. I don't think curiosity is discouraged, just the impetus to turn it into action in this case.
I think there's a balance that some people don't appreciate. Hacking your health has some additional risk vs. some external system or process; your health is often irreplaceable, and you might not get a second chance if you screw it up. I think you should be a little more careful with DIY pharma than you would other things. And I think you should be very careful about evangelizing it to other people.
It is the case that some people get so wrapped up in overcoming authority that it becomes the driving factor behind what they support and what choices they make. It's essentially the same thing you say you're disgusted with: it's not about figuring out how and why, it's wanting to be right and the authority to be wrong. The exact same behavior, just from the other side of the fence. Call this a strawman if you want, but I'm still asserting it's fact.
This is why I don't immediately see groups like four thieves vinegar as positive. I don't know if the stuff they're doing actually works or not. I suspect that you don't know this either. It might work. They assert that it's simple and just use their stuff and boom, daraprim (or whatever). But what happens if it doesn't? The result is not a failure to adapt some device to do something it wasn't intended to do, or get data from a device the manufacturer would rather sell, it's direct impact to your health.
Specific to their microlab, my immediate questions are around sanitizing or disinfecting it. I have skimmed the documentation and parts list. They recommend using 'water'. There's no discussion about distilled vs. deionized vs. tap water. There's nothing here about ensuring the mason jars and tubing are clean to any particular standard. I haven't seen any discussion yet about cleaning the reactor between batches, in terms of ensuring there is no residue from the prior batch. I sure hope I've just missed it, or this is called out as a 'human tasks' in each recipe. Contamination is ok (ish) with a Coca-Cola Freestyle machine at McDonald's. You can tolerate your Coke tasting like 8 other drinks. I don't think it's OK when making sofosbuvir.
I think you should be able to do just about whatever you want to with your own body. Please be careful. But I don't think you should be able to set yourself up as a counterculture medical authority and not have people ask questions about it, especially because a lot of people _won't_ ask questions.
You've right to assert that, and I agree with you. there's not nearly enough information provided to be used safely as a tutorial. But that's the whole point of my disgust with the shift in tone away from hackers.
you wrote
> Please be careful. But I don't think you should be able to set yourself up as a counterculture medical authority and not have people ask questions about it, especially because a lot of people _won't_ ask questions.
And I agree, following this as written is dangerous. But knowledge is dangerous, the core of the hacker ethos is that knowledge and information should still be free.
I take issue with the hand wringing, and the lack of curiosity. The closing of the top comment for the thread is
> This kind of arrogance and lack of respect for the discipline required in organic chemistry is going to result is someone getting hurt.
This could serve as a prime example the epitome of counter hacker-culture
It's fine to say, this is dangerous, and to roast the author for a badly written guide resulting in an apparent indifference for the safety of others... but to frame it as a lack of respect for the discipline (and expatations and rules) isn't hacker culture.
Never felt too much at ease with the DIY medicine arguments. I mean, I agree on principle with the idea of not being at the whims of the pharmaceutical industry, but they always give me the feeling of being just one step away from going fully "Cancer/HIV is caused by mobile phones and you can cure them with vitamin C" and "Covid is a big pharma conspiracy" kinda people.
I am not sure how you got to this slippery slope that doesn’t have a good reason to exist.
This movement is not about filling capsules with powdered ginger to treat something that it’s unable to. The goal is to synthesize molecules that have been studied and that we know work as a replacement for having to pay a doctor to get permission to buy them.
If the problem is "having to pay a doctor to get permission to buy them", we should fix that through policy. I agree with you that this is a problem. Some things shouldn't require a doctor's involvement like an ultrasound, even medication. If I kill myself with taking a certain med (which many people are intentionally doing with drugs already), that would be my own fault.
Some people could manage their health much better than the current system. Other people would totally try to cure their cancer with vitamin c.
A parallel that comes to mind is "accredited investors". These are people that have chosen to opt out of the guardrails and been allowed to by fulfilling certain criteria. Maybe something like that would make sense for medicine.
Lots of existing medicine is a crap shoot -- look at the possible side effects many of them have (including death).
I don't believe in the conspiracies you listed, but I absolutely believe there are plenty of conspiracies in plain sight (AMA restricting the number of doctors and fighting against single payer, the FDA being in bed with big pharma, etc).
We all should have the right to control our own bodies (which extends to recreational chemicals). For those compounds that are not yet vetted, we should have the right to make informed choices.
A lot of people with rare conditions are pretty much forced to become experts on it to where they're reading the literature and going to conferences. The medical community isn't set up to help you if you have an uncommon issue and aren't a relentless self advocate.
This looks more like a libertarian nightmare than an anarchist dream. I couldn't care less what you inject your body with, and will always support open science, but this is no solution to the USA's disastrous healthcare system.
The real "right to repair your body" necessarily involves a socialized healthcare system, like in the rest of the West.
So if they are going to do this, can we get a signed affidavit from then that they will not call 911 and use taxpayer funds for a transport to the local ER when things go south? If so, then I'm all for it.
While I can appreciate some of the intent to make certain healthcare more accessible, it is never a good idea to have anyone inexperienced attempt to perform some of the reactions required to synthesize medicines. This should always be done by experienced individuals with quality reagents and the proper lab equipment. While it might be easy to substitute a mason jar for a proper glass reaction vessel it is not so simple to find a substitute for a gas chromatograph/mass spectrometer in the back of your pantry.
IMO, The test equipment required to analyze the results of the reactions is generally most cost prohibitive aspect of this type of 'research'. And this is where I have a problem with these guys: I don't see any plans available for building any of that. Building many of these devices is not out of reach for a skilled individual, and it makes more sense to me that this equipment should more readily accessible than a glorified Keurig machine for drugs. This kind of arrogance and lack of respect for the discipline required in organic chemistry is going to result is someone getting hurt.
My relative is a chemistry professor who used to manage a mass spectrometry lab. Pharmaceutical companies sent them samples when something went wrong. They have their own spectrometers but interpreting wrong results is not always easy.
Sometimes it included some cool detective work. In one case they were able to track the contamination down to post packaging. A component of the sticker glue diffused through the wall of the plastic bottle and contaminated the stuff contained therein.
So except for an excuse to tell this story my point is that maybe you can outsource the analysis. I admit I haven't checked if the labs accept samples from random people. In theory that should be possible.
>. This should always be done by experienced individuals with quality reagents and the proper lab equipment.
Naaa. Same with prescription meds, open it up! Isn't that how we found a drug for a Parkinson's mouse model? [https://en.wikipedia.org/wiki/MPTP]
Big brother's job is not to control and ban certain behavior. California thinks this way and aggressively enumerates every possible bad thing they can conceive of and making it illegal. As if slipping on a banana peel were illegal. It's borderline insane, like why not make getting sick illegal or being poor illegal, why not make changing lanes without a turn signal illegal. Ethically as long as the instructions say, "do this wrong and you'll die, it's a garage door spring" people will know. Or "take this medicine, but if you don't check your liver/kidney/clotting you may well die". In big bright red letters.
Don't make it impossible to do freely. Just make it impossible to do without reading and agreeing to the fact that you understand the big red letters. Understand the risks. Medicine is all about patient autonomy and this is the opposite.
> why not make changing lanes without a turn signal illegal.
Funny you should say that, the California Vehicle Code (CVC) Section 22108 requires drivers to signal for at least 100 feet before making a lane change or turn. The fine is $240.
https://www.shouselaw.com/ca/defense/vehicle-code/22108/
I don't understand why they even bother reinventing the wheel. Biotech and lab techs aren't being paid FAANG salaries. They are hardly more expensive than minimum wage employees. Just hire some and get them to do the actual experiments.
Many have their hands tied. In the biopharma industry, there are strict NDAs and well enforced noncompetes that make it hard to move throughout the industry and sometimes even talk about the work.
I work today with someone who interned with Gilead. According to him, his NDA lasts until 2099 and covers "Anything and everything said, heard, seen, imagined or done" while under their employ that hasn't been made 100% public. His resume has just one line entry: "Intern, lab tech. Details NDA."
Aren't such NDAs illegal in countries like the Netherlands (e.g EU)? I wonder how they deal with that.
I work for a competitor for Gilead and we certainly don't apply these sorts of constraints on our interns. I just worked on a recommendation letter that describes his work in detail (while not containing anything truly proprietary).
Get rid of patent law and government regulations and then no one will need to roll their own medicine, because everything will be very inexpensive and high quality.
Just seeing this for the first time, and I love the hacker ethos displayed here. Obviously there are Risks Involved especially for health care, but I appreciate the well-researched and documented reasoning behind their solutions. Let the people control their own lives a bit more.
To me, the hacker mentality has, at its root, been about more about shortcutting red tape and discarding the guardrails the gov't put in place "for your own good". Often that comes hand in hand with rule breaking and illegal actions.
But since healthcare has been so fully co-opted by moneyed interests it is good to see things like this and "medical vacations" grow in popularity - not because they are great solutions but because they underline how thoroughly the current system has screwed the pooch and will hopefully lead to real change.
I know someone whose wife was judged terminal, and he took her to Mexico for some unapproved cancer therapies. This is not a rich guy.
(She's dead now, as you might have guessed.)
And I know someone who went to Mexico to get unapproved stem cell therapies when US doctors said he'd never walk again and now he's walking just fine. Anecdotes are just random stories you hear along the way.
The point being: there's already a right to try unapproved therapies, even if it sometimes requires extra travel. People who aren't wealthy manage to try them.
As for "anecdotes" -- do you have any actual data? Neither do I.
I can't quite discern the subtext here but I will say that for many people international travel is not an appropriate solution for access to health care. People who are elderly, very sick, or without a passport, travel could be infeasible.
And beyond the logistical challenges, I think it should be fair to say axiomatically that international travel is not an adequate solution to healthcare access.
"right to try" seems to be enshrined in some US laws. Were you not aware of that?
https://www.fda.gov/patients/learn-about-expanded-access-and...
as for "travel could be infeasible" : I'd suggest you call up some clinic in Mexico and pretend to be terminal and unable to travel. See if they come up with some solution for you.
That makes as much sense as saying "marijuana is already legalized in the US - you just need to buy a plane ticket to Amsterdam". The whole point of having your rights in certain jurisdiction is that you didn't have to flee that jurisdiction to exercise the rights.
Marijuana IS pretty much legalized in the US.
As for "access to healthcare" : have you heard of Right To Try? Google it.
> Marijuana IS pretty much legalized in the US
BATFE form 4473 states the following:
> Are you an unlawful user of, or addicted to, marijuana or any depressant, stimulant, narcotic drug, or any other controlled substance? Warning: The use or possession of marijuana remains unlawful under Federal law regardless of whether it has been legalized or decriminalized for medicinal or recreational purposes in the state where you reside.
We have state police doing literal highway robberies and stealing cash from state legal businesses.
https://reason.com/2022/02/04/a-california-sheriff-remains-f...
Just ask poor Hunter Biden what the potential ramifications are….
(Note: I neither endorse nor condemn him or his actions)
No need to be condescending. Yes, I know about it - I know it only appeared recently in 2018 too. And also you have to be literally dying to use it. If you're not dying yet - but may be severely disabled, in tremendous pain, or otherwise suffering greatly, but if you're not nearly dead yet - no right to try for you.
> Marijuana IS pretty much legalized in the US.
"Pretty much" does a lot of work here given it's still Schedule I on federal level.
Sigh. There's always something you can be unhappy about. You must spend all your time on it.
That's a strange reply. You said something incorrect, I corrected it, but now you imply that knowing the correct facts is some kind of personal flaw?
the personal flaw is not getting irony, and feeling you have to respond with Earnestness to it.
From a random third person perspective here: if your “Google it” comment was intended as irony, it was not at all successful at that.
if you're actually a random third person, you need to find a hobby and stop interjecting yourself into other people's conversations.
that you're having on a public website? why should they do that?
If your point is that people who aren't wealthy have a right to try unapproved therapies, why throw in the quip about Mexican healthcare killing people, and in such a way as to make it sound like that's the expected outcome? You could have just left off the parenthetical and left it at that.
It's one data point, so our prior is "death." Unless you have other data points?
The trick, and a lot of people are bad at this, is knowing/understanding whether the treatment is likely to help, but is banned/unapproved because it's too new, has bad side effects, or doesn't actually work. Mexico isn't likely to have better cancer treatments than the US, but something like stem cell treatments are just not approved yet because of regulatory hurdles, not because they aren't liable to not help.
That's it exactly.
Stem cells aren’t laetrile.
>judged terminal ... She's dead now
What is the intended message of this short story?
don’t waste your last days with quacks
Alternatively phrased: waste your last days with mainstream quacks with an MD.
"Don't go to Mexico".
Or if you go to Mexico you die.
She would have almost certainly been dead either way though. I’m all for allowing people to take these long shot bets. It’s their life.
> more about shortcutting red tape and discarding the guardrails the gov't put in place "for your own good".
Well, this really is for the good of the vast majority of people. The problem is that this also applies to a minority of people, who have the skills to research thing and make educated decisions about things.
It's not a bad general rule, but maybe it should be overridable in certain circumstances, e.g. when you are experimenting on yourself.
I'm not a big fan of getting dental work done, much less "DIY home dental" so was pretty skeptical of what they could possibly be doing and was really pleasantly surprised by their tooth seal instructions.
They're taking a somewhat well-known cavity prevention and enamel remineralization treatment that has the unfortunate side effect of turning your teeth black and replicating steps from a study to avoid that.
One of several studies they link to: https://www.scielo.br/j/bdj/a/rHSG9jRQDdY7sCFZzpNXYXy/?lang=...
Saw these guys talk at DEFCON this year, absolutely fantastic presentation. It was so powerful and important that I'd actually recommend watching it before pretty much everything else from the con.
Recording here: https://www.youtube.com/watch?v=5rQklSmI_F0
I've watched a bunch of this. Does he mention where to get the precursors to the medicines he's trying to make?
It’s in ChemHacktica buyables afaict which looks similar to askcos MIT. Played around with it, the products I looked up would be extraordinarily expensive. Guess that’s not a surprise if you are buying 10mg of XYZ at a time vs the “100 tons” they probably buy for labs in China.
Haven’t watched video yet, besides being fun what is the use of this? I see in the defcon video a mention of hep c treatment which , last I heard was something 50,000 usd (looking it up ranges 23k-80k) so I guess that makes sense vs trying to make bathtub antibiotics and steroids.
Fun, I’m probably on another “list” now.
There is a group that is producing medication that has yet to hit the market for self use. Someone got a hold of a patent, found a chemist and a lab willing to test the substance.
I'm waiting for the actual medication to hit the market but if the FDA approval takes a long time, I will make the med myself. The substance in the medication has been used orally for a long time with a good safety profile and it was discovered that it can help regenerate nerves.
Maybe I made all of this up to sound cool on the internet. If you know what I mean.
The FDA does not take information from other countries into account much. EDIT: Foreign approval and use history can be supportive information in an FDA review process, but are not determinative factors for U.S. approval.
For example, Promethazine has been popular in the UK for a very long time (ingredient in UK Sominex), but its not approved in the U.S. as a sleep aid.
InHousePharmacy.vu/search.aspx?searchterm=promethazine
> The FDA does not take information from other countries into account.
The FDA doesn't care where data comes from. Much of drug testing in the US is done overseas in CROs.
> but its not approved in the U.S. as a sleep aid.
Approval is not automatic just because another country did so. Someone needs to take responsibility and formally apply.
The issue is that foreign approval and use history are not allowed to be determinative factors for U.S. approval in an FDA review process, but rather as supportive information only.
Seems rather myopic to me.
We already share critical intelligence with the Five Eyes countries; why not share medication safety/efficacy information with them too?
I remember a blog post of an MD or psychologist about Russian/Soviet psychotropic drugs that are not used or unknown in the west and used as an analogy that if Russia had found new elements in the periodic table, and we would not use them.
It might be worth considering that until very recently, Russia's military was definitely supremely capable and on-par with NATO.
Russia lies. About everything. And culturally Russians have been immersed in a narrative that they're the absolute best in the world at everything, that all good ideas were originally Russian ideas (see how the narrative of LK-99 started getting modified before anything was verified).
So do they have processes or techniques not used in the West? Sure it's possible: but it's also far more likely that the reason we don't use them is that the actual investigation of their effectiveness can't reproduce the results.
Because no one looks up the clinical studies: they just repeat the fun narrative about big mysterious super-technology from behind the Iron Curtain. Which itself was essentially an invention of interest groups looking for funding in the West (i.e. there's was never a "missile gap" the US was going to lose).
Like as noted here: you remember the story, but not any actual specific drugs or processes? Why?
> but it's also far more likely that the reason we don't use them is that the actual investigation of their effectiveness can't reproduce the results.
Or, passing a novel approach through FDA, who are previously not familiar with it, is so prohibitively expensive that nobody wants to invest in it. And since it already has prior art, it's probably also not patentable so you can't even get back the money after you get the approval. Unless such drug can make billions as generic - which is quite rare - there's no point in investing in it, even if it works.
EDIT: Someone found the link: https://slatestarcodex.com/2014/08/16/an-iron-curtain-has-de...
I did not find the blog post anymore. But the blog linked to a pharmacy website that had tons of stuff available.
A few links:
https://en.wikipedia.org/wiki/Phenazepam
https://nah.sen.es/vmfiles/vol9/NAHV9N2202155_68EN.pdf
https://cosmicnootropic.com/blog/popular-nootropics/
https://medicine.umich.edu/dept/psychiatry/news/archive/2020...
"It might be worth considering that until very recently, Russia's military was definitely supremely capable and on-par with NATO."
I think Russia was not on-par with NATO after it collapse, at least not in conventional warfare. They missed the electronic revolution in warfare (See US-IRAQ Gulf War I). But they are now back on par, possibly better. Their jamming, air defense and rockets are top-notch, possible better than NATOs. They can disrupt our GPS System, we can't disrupt theirs since it is much younger, speak better.
As a comparison: Germany had 3000 tanks during the cold war. Now they have 300, 200 operational. Russia looses so many tanks every month, and actually builds 100-200 new ones every month. Germany had ammunition for two days of warfare. After they gave some to Ukraine, they have ammunition for one day left.
Russia has been underestimated. They are back and their future looks pretty good, even with a dubious leader. They won their war:
Defeat of the West? Emmanuel Todd and the Russo-Ukrainian War https://www.thearticle.com/defeat-of-the-west-emmanuel-todd-...
They have energy, they are not overpopulated, they have fewer problems with immigration. In fact, they're even looking for immigrants: https://movingtorussia.ru/ru
In the US I can smell the recession and banks will go belly up very soon: https://www.visualcapitalist.com/which-big-u-s-banks-have-th...
In Germany too. Without Russian Energy their manufacturing heavy country will deindustrialize.
At the same time, Russia is actively trying to replace the US Dollar as the world reserve currency, together with BRICS+. If successful, this will have a tremendous impact on the US.
I am not a Putin troll, and I hope that I am wrong. But the future has the nasty habit of taking unexpected turns.
> As a comparison: Germany had 3000 tanks during the cold war. Now they have 300, 200 operational. Russia looses so many tanks every month, and actually builds 100-200 new ones every month.
New production is 10 tanks a month at best, which is indeed how many Ukraine destroys sometimes in a day. The rest are refurbishments of rapidly declining USSR's stock without anything to replace it. I think it would be appropriate to call it Soviet Union's last stand.
> But they are now back on par, possibly better. Their jamming, air defense and rockets are top-notch, possible better than NATOs.
That is a wild stretch considering that Russian navy has run away from Crimea at the risk of getting sunk in entirety, Russian air force cannot come even within a hundred kilometers of Crimea without getting shot down, and ground forces are regularly hammered by drone and missile strikes, all while Ukraine has less of everything and is under severe restrictions what it can do with military aid provided to them. I cannot imagine any major NATO country in such a poor position that they cannot fly airplanes over the territory they hold. Claiming victory in such position - as you do - would be downright ridiculous.
Russia doesn't produce any new tanks, not since the dozen or so T-14s. Remanufactured T-90s are probably close to 10/month while refurbishing t55 and t62 are at 100-200/month.
https://www.ukrinform.net/rubric-ato/3820768-russia-can-prod...
They have not "won the war". Not by any stretch. That's just a pundit's plainly ideology-driven projection.
The fact that this author chose to call their book The Defeat of the West, and that its main thesis is that this defeat is due to the “vaporisation of Protestantism" should give one serious pause.
Perhaps not the best source to turn to for a serious, impartial military analysis.
"Perhaps not the best source to turn to for a serious, impartial military analysis."
Fair point. But it is from Emmanuel Todd. Who the f. is Emmanuel Todd?
"Todd attracted attention in 1976 when, at age 25, he predicted the fall of the Soviet Union, based on indicators such as increasing infant mortality rates: La chute finale: Essais sur la décomposition de la sphère Soviétique (The Final Fall: An Essay on the Decomposition of the Soviet Sphere)."
It doesn't matter who he is, or what he said when he was 25. His perspective this time around is plainly warped, and his analysis is just as plainly flawed, given the current reality of what's happening on the ground in Ukraine. You can tell that all by yourself, without having to take some supposed visionary's word for it.
That's what happens when people get lucky early in their careers. Sadly, it tends to go to their head.
See also: https://en.wikipedia.org/wiki/Argument_from_authority
What’s currently going on in Ukraine is they are slowly losing a war of attrition that eventually their allies will lose interest in funding.
We don’t have to like that outcome to see that it’s inevitable and has been from the very start.
One entirely possible outcome I haven’t seen discussed much is Poland turning on the Ukrainian rump state once Russia finishes annexing the ethnic Russian east.
The current situation can only be regarded as a stalemate. In the service to which Russia is devoting 10 percent of its GDP, while Western countries are spending 1 percent.
We don’t have to like that outcome to see that it’s inevitable and has been from the very start.
It's not at all inevitable. Russia has lost many of its optional wars of aggression and foreign intervention, in the past.
Putin will also be dead or starting to lose his marbles in a few years, and Russia's overall prospects for stability (even if there were no war at all) do not look particularly good after that.
> At the same time, Russia is actively trying to replace the US Dollar as the world reserve currency, together with BRICS+. If successful, this will have a tremendous impact on the US.
I would happily take the other side of this bet.
Weird analogy. The USSR/Russia did discover new elements, and while there was a certain amount of arguing over names (as it wasn't always clear who discovered them first), there was no "not using" them because they were Russian. That isn't how science works.
That’s the point of the analogy. Even though scientists in the USSR discovered certain elements, the US did not refuse to “use” them. But for pharmaceutical compounds like bromantane, this isn’t the case. An anxiolytic stimulant discovered and approved in Russia, it cannot be prescribed in the US.
"In 1996, it was encountered as a doping agent in the 1996 Summer Olympics when several Russian athletes tested positive for it, and was subsequently placed on the World Anti-Doping Agency banned list in 1997 as a stimulant and masking agent.[10][42]"
who cares what a blog post of an MD or psychologist says? If a new element had use, of course we would use it. Are you seriously telling me that if they discovered copper, we won't use copper?
> If a new element had use, of course we would use it.
If we had FDA for elements, then we wouldn't because FDA for elements wouldn't approve it. That's the point of the analogy.
https://slatestarcodex.com/2014/08/16/an-iron-curtain-has-de...
Many nootropics and Phenibut comes to mind. Not used is relative. FDA occasionally cracks down.
Link to blog post being described:
https://slatestarcodex.com/2014/08/16/an-iron-curtain-has-de...
There is the famous example of Thaladomide, which was approved by the regulators in the Germany and caused a disaster in birth defects:
https://en.wikipedia.org/wiki/Thalidomide_scandal
US FDA however was skeptical of the safety of the drug and never approved it for sale in US.
It doesn't look like FDA - or, specifically, Frances Oldham Kelsey - had any data or any evidence to suspect something was wrong with thalidomide. Partly it was because the manufacturers hid whatever suspicious data they had, but Kelsey had no way of knowing it - she basically just run out the clock until it so happened that the news about birth defects caused by it started coming in. That seems to have validated the idea that the strategy should be "delay approval as long as possible and request more and more tests for as long as possible". Which, of course, technically makes it safer for the drugs that manage to pass - but the cost is hugely inflated costs and absence of access to many drugs.
Wrong: FDA was approved in the US and is used as an effective cancer drug. We just don't give it to people who would be at risk.
Because then you can’t sue someone as easily in the US when you find out the drug popular in Europe actually caused cancer 50 years later.
The US has to be sure it’s completely safe. Or that it will make enough money to outweigh the lawsuits later…
> The US has to be sure it’s completely safe.
That doesn't make sense to me, who does US refer to in this case?
The manufacturer is the one that would be sued and they generally only want to expediate process.
FDA is one that aproves/denies application. They wouldn't get sued for using data from other countries (or at least no more that they already are).
The "Five Eyes" countries are the United States, Canada, the UK, New Zealand, and Australia.
Of the four countries that aren't the US, I'm sure that all have regulatory safety standards that would satisfy the safety and efficacy expectations of the American public.
It's still prescribed in the US for other uses though. I fucked up once and took one as an antiemetic, forgetting it was a sedative... right before I had an important meeting. Lesson learned :P
But for that kind of thing it would seem to be much easier and probably cheaper just to mail order the drug from overseas, or even book an inexpensive flight and buy some. For example, bromhexine and ambroxol are cold remedies that many people find effective, are not available in the US, but are easy to mail order from any number of Japanese sellers. The difficulty of hiring a lab or setting one up yourself would seem to be worthwhile only for new or unusual medicines that could not be obtained this way.
gettong those drugs are legal? and do you know someone in japan willing to do this ? sounds pretty specific.
Out of actual interest for my own medical use: Which medication would this be about?
tacrolimus and which group? Sounds like an interesting story, not sure why the lack of transparency.
I just saw this writeup on them: https://www.404media.co/email/63ca5568-c610-4489-9bfc-779180...
We've always had the right to repair our body. We've just not always had the tools. My personal view on this is rather to opensource the tools like ultrasound, MRI, heart monitor, etc. This would give the people the tools to help diagnose issues without needing a doctor involved. It is taking a year just to see a doctor.
As much as I'd love a long-term solution to dental cavities, I'm leery of any treatment using silver nanoparticles, which can cross the blood brain barrier and accumulate in the brain, where they've been shown (in mice and in human models) to contribute to neurodegenerative diseases.
I'm not a biologist or chemist, so I don't know enough to judge if the method listed here is completely safe, but even a cursory google shows cause to be concerned: https://www.tandfonline.com/doi/full/10.1080/17435390.2018.1...
This just feels like drug dealing with a far more benevolent motivation. I agree that it should ultimately be up to the person but there's a lot of ways this could go wrong.
Remember, you're putting these substances in your body. Make damned sure you trust the person you got them from. Like, "I would trust you to raise my child in the event of my death" levels of trust.
> Make damned sure you trust the person you got them from. Like, "I would trust you to raise my child in the event of my death" levels of trust.
Do most people feel this way about formalized medical practitioners today?
If you're a woman in the US, doctors will sooner call your issues anxiety and throw Xanax at you than to try to help you figure out the causes. Sometimes they'll even get mad at you if you don't want to take Xanax and suggest you're mentally unfit.
I’m not a woman and it wasn’t Xanax, but Ativan was a miracle drug that cured many physical symptoms for me. Doctors follow an algorithm where they look for common stuff first (“when you hear hoof beats…”), and anxiety is very common; I believe more so amongst women.
My wife is currently dealing with a kidney stone that is filling her entire kidney. Major surgery incoming. She started having them check it a year ago.
When advocating for herself, the male doctors either a) seemed to believe she was making it up and attributed it literally to her monthly cycle, or b) suggested it was anxiety.
I'm sort of in the camp that doctors absolutely poopoo women's problems.
It happens for men, too. Anyone with problems that don't produce obviously incorrect lab values or gross physical symptoms, unless it's in the top 10 or 20 most common illnesses, good luck with that. Even if your lab values are off, but "not enough", getting anyone to do something about them is heroic effort, and when you're already ill, it's a farce.
“The algorithm worked for me” isn’t a particularly strong defense of the algorithm.
so you're saying men don't mistakenly diagnosed with anxiety when it's not?
No. That’s a whole different sentence.
The alternative is to not visit a doctor of any sort. You might take that further and not visit a mechanic. Medical practitioners are not perfect. I trust they are doing their job and they can get it wrong. Medicine is not easy. People have to advocate for themselves if they don't think the doctor got it right.
In theory they go through a lot of training and regulation to make sure that the goons stay out.
It's not 100% effective, but I do trust my PCP more than a guy in Midtown selling PCP.
Well that's the point of DIY medicine, empowering people like yourself to make your own PCP. Of course you trust it more than the PCP from that guy in Midtown.
I'm just waiting for the libertarian drug reform so that I can get my PCP from my PCP
I do, but I'm married to mine.
I think that the intended use case is people who otherwise wouldn't be able to access important drugs. In that sense, I suppose that some people might consider it worth the risk.
Isn't the point of DIY medicine that you are the person making the drugs?
Then make sure you trust the guy you got the instructions, ingredients, and equipment from.
Considering the issues with snake oil. And well what currently is marketed as magic cures for various things, I rather not trust most instructions...
Gender-affirming hormone therapy is done grey market and I don't think of that as "like drug dealing"
A lot of the criticism I'm seeing isn't balanced against the fact that a huge number of people die every day (in developed nations including mine) because of their inability to pay has hindered their access to medications and procedures.
My wife is a clinical pharmacist (rounds with medical doctors and provides detailed patient analysis of their drug needs).
This article blew her mind.
In what way?
Question from a non chemist: Ok so you do some chemistry and produce a vial of supposed medicine, how do you tell that you didn't fuck up and produce something toxic? I guess a modern lab would just stick the result in a gas chromatograph or something but you're not going to have one at home.
I vaguely recall (from, er, Sherlock Holmes) that old school analytic chemistry could figure out what an unknown chemical with cheap reactions and tests, but does anyone even know how to do that any more? Is it automatable?
It really depends on the chemical.
I advise anyone interested in pharmaceuticals to read The Old Vegetable Neurotics: Hemlock, Opium, Belladonna and Henbane, Their Physiological Action and Therapeutical Use Alone and in Combination, from the 1860s, I think. If you read between the lines, it is the story of a doctor who is immensely frustrated with the impurities of some common medicines, not knowing what you were getting, was this the actual chemical doing the job, and so forth. He proceeds to examine each part of the plant (leaves, stems, roots, flowers, and so on) to see which gives the best concentration. He then works at extracting exactly what he wants, very carefully. Then he tests tiny amounts of various rodents, then his dog, then himself, working to determine an appropriate dosage.
It's quite impressive and hardcore. You can feel this man's annoyance at the state of things and his passion to declare, "I'd rather just find this out now instead of waiting for everyone to keep fiddling about." With a small room and some glassware you could also do this. Now, it wouldn't be simple, and to be honest the various units used are a hot mess, but the basic principles are there.
Now, automatable is a matter of degree. Real chemists have whole flowcharts of "do this, do that next, now this other thing" to detect the presence of a particular sought-for thing, but that does not prove a negative, you do not know what else might be present. That's the real rub and why the focus of so much chemistry is on extraction and purification.
The old school way was basically try a reaction, see if it matches a group of chemicals. Try another, see what you get. You can only close in on a reasonably accurate guess if what you're working on is fairly simple. Otherwise you'll be stuck in a local maxima of has this group, doesn't have that group, without the ability to get any better resolution.
titration with reagents is a good start. you can also check for the levels of expected impurities this way.
Ok, so I was interested in https://fourthievesvinegar.org/tooth-seal/ Was happy that they say it's completely safe but... there's no linked study that proves it's safe. On what basis is it safe?
There's been multiple recent studies linking higher fluoride amount with reduced intelligence in children. How is that different?
fwiw - if you click through to the complete instructions PDF they do link to multiple different studies on the topic: https://fourthievesvinegar.org/wp-content/uploads/2024/09/to...
I don't believe you are supposed to ingest the tooth sealant.
Well yes and they do mention you shouldn't leak it but given that it's on your teeth, how much leaches? Given that it degrades over a year
The fluoride added to the drinking water in the US exposes you to many more times than using a fluoride tooth paste, so any leeching from this is likely inconsequential. There's also papers linked in the website and it appears that it's an improved version of the silver diamine fluoride treatment, which a quick search reveals is FDA approved.
it's different because the risk analysis for individual decisions is completely disparate from the risk analysis of policy decisions.
How is it connected?
Also I'd be interested in you're citation for the fluoride assertion, the last I remember that was a conspiracy theory and the actual published research was mixed and inconclusive?
> it's different because the risk analysis for individual decisions is completely disparate from the risk analysis of policy decisions.
That's true, but when doing the risk analysis for individual decisions, it helps to have actual data to make that analysis. The website says it's safe without justification to say why it's safe, how it's similar to known-safe mechanism, etc.. "Trust me bro it's safe" is not exactly confidence inducing.
> Also I'd be interested in you're citation for the fluoride assertion, the last I remember that was a conspiracy theory and the actual published research was mixed and inconclusive?
There's this recent report. This is for countries where children received fluoride exposure amounts higher than 1.5 mg fluoride/L of drinking water which is higher than what you'd get in the US.
https://ntp.niehs.nih.gov/whatwestudy/assessments/noncancer/...
Most of the studies that show lower IQ are in Canada, China, India, Iran, Pakistan, and Mexico where those levels can be reached.
Example of studies:
- https://pubmed.ncbi.nlm.nih.gov/18695947/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6923889/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3409983/
It sounds interesting, but it really feels like they are downplaying the risks here.
I'd be hesitant to put anything mixed in a DIY device with off the shelf peristaltic pumps into my body without some additional analysis.
If something like automated analysis was a possibility, then maybe this would be more alluring.
Yep: as someone with a chemistry background, synthesis is the easy part.
Purification and analysis? That's the hard part.
Not getting screwed by additives, coatings or contamination? Thats what the big bucks in lab gear cost (i.e. a metered dispensing pump comes with a list of every element which touches the dispensed fluid).
Mixael was a physicist. A chemnarchist’s easiest hard problem is probably going to be an xray scope for tha masses
But, I hear FCC is orders of magnitude more effective, eg, so maybe a portable massspec is where its going to be?
https://news.mit.edu/2024/researchers-3d-print-key-component...
(
>This work was supported by Empiriko Corporation.
This is interesting. The abortion section doesn't seem to mention ye olde menstrual extraction. Some decades ago, I believe the early seventies, some feminists figured out how to basically get the whole "eject the sloughed menstrual tissues" part of the cycle over with in a simple procedure, rather than enduring the days of cramps, which I know make some women quite miserable, even debilitated. This can also serve as a first trimester abortion.
[dead]
"From the moment I understood the weakness of my flesh, it disgusted me. I craved the strength and certainty of steel. I aspired to the purity of the Blessed Machine.
Your kind cling to your flesh, as if it will not decay and fail you. One day the crude biomass that you call a temple will wither, and you will beg my kind to save you. But I am already saved, for the Machine is immortal…"
This is basically what was going through my mind while browsing this website ;)
What is that, warhammer?
Yes
https://youtu.be/9gIMZ0WyY88
Going by the army camou and the logo, i have a few suggestions for his tv friendly moniker
https://en.wikipedia.org/wiki/Carl_Magnus_von_Hell
Most medicine is complete bullshit, doctors have a specific set of protocols they have to follow to avoid mal practice. There is no nuance. Most pills will cause far more damage in long term dependency and side effects than they will solve. ESPECIALLY for psychiatric conditions.
Medicine mostly makes sense with broken bones and physical surgeries.
Don't even get me started on dentistry.
For years, I struggled with severe dental issues, leading to advanced gum disease. Dentists told me I’d eventually need tooth extractions or major gum surgery. I’ve always hated going to the dentist.
Two years ago, I decided to take control of my own dental care. I bought a dental scaler kit online and started removing plaque from the backs of my teeth. I learned the proper technique by watching YouTube videos and now do this about once a week. The results have been incredible—my teeth are spotless, I have no gum bleeding, and I haven’t had any cavities. I still go in once a year for a professional cleaning of harder-to-reach areas like my molars.
If you google whether you can do this, the internet is full of large WARNING YOU CANNOT SCRAPE PLAQUE OFF YOUR TEETH. Every single website is full of dentists screaming that you cant clean your own mouth. This is clearly bullshit, you can actually just scrape it off from the comfort of your own home. There's clearly some risk, but if youre an intelligent adult, you can do it.
I also have my doubts about dentist advice after seeing the dramatically positive effects a waterpik and oil pulling had on me and several other people I know. No gum problems, less sensitive teeth. Due to several moves and my laziness I didnt go to a dentist for cleaning for more than five years. Last year I went again and had zero problems. Not even much plaque.
I wonder why dentists don’t tell everybody to get a waterpik first before any other treatments.
A waterpik can push debris underneath your teeth. If you have receding gums I'd be very careful about using one (again).
I've actually had multiple dentists either telling me to get a waterpik or praising me for having one. That was in China (Japanese dentist though) and in France.
My dentist recommends and supports using a Waterpik.
Electric brush made a huge difference for me
I do this, too. And since we practice it far more regularly than a periodic visit to a specialist, we probably have cleaner teeth than most.
"Most medicine is complete bullshit, doctors have a specific set of protocols they have to follow to avoid mal practice."
I mostly agree with this. Most doctors are just reading off the Epic professional version of WebMD for most symptoms/conditions. It's especially important to do your own research and be your own advocate for any serious conditions so that you can ask the right questions, which sometimes snaps them out of the scripted response and consider other possibilities or concerns.
Its risky for them to say anything that falls outside the guidelines. And they really dont have much to gain. They see so many patients
Any particular kit and/or videos you recommend?
I guess I'm on the few pills that aren't bullshit then. The ones that prevent HIV, treat ADHD, and feminize one's body
Fish antibiotics are amazingly cheap sources of an amoxicillin.
Many stores are being forced to pull it for that reason. The prepping community used to promote it and that caught the attention of the wrong people. One alternative are a set of doctors doing very low friction online consulting and prescribing, some even selling kits with assorted antibiotics but they are also getting pressured to stop.
Giving me ToTSE vibes, the ‘better living through chemistry’ subforum and anarchist cookbook really unlocked my young mind back in the day.
Anyone else go on ToTSE?
I remember when everyone was going crazy for the 'service mode' hack on vending machines that only let you see sales when they were locked shut...
something something Bad Ideas forum.
I thought it let you change the price of an item lower or get free dispenses? I remember reading that! It got me interested in the code for machines and how to exploit hardware. Really good for my budding mind and future career in tech.
Only if the door were open. The 4-2-3-1, when locked, only displayed sales data. You had to pop the T-handle open and push another button to go into Service Programming to actually set prices with the front-panel buttons.
At the same time, all my local vending machines were dispensing with the old tubular locks - they all went to funky keyless remotes to unlock machines.
Read, Know, Do
May their tribe increase...
Interesting concept. I love the idea of a right to repair for our body.
Healthcare in the US is terrible, sure. And making medicine more accessible is a great thing. But I feel like the term "right to repair" is being hijacked here. A manufacturer that creates a piece of technology can theoretically publish repair instructions and provide parts (at a reasonable cost). This is different than the issue of accessibility in the drug space?
Maybe I'm making a fuss over nothing, but it just stood out to me.
I agree this is a totally different thing. It definitely feels like they are trying to make use of the feelings people have about the right to repair movement for their own agenda. Some might say co-opt, others riff off of. I can see that there are some similarities, but power struggle and regulatory situations are totally different.
Exactly. They've taken a popular term and applied it where it doesn't fit.
You may have a "right to repair" something you bought. You didn't buy your body.
Drug safety is an old, old issue. We can argue about how it's applied without dragging in popular phrases that don't apply.
>You didn't buy your body.
So what? You're still responsible for it - its nourishment and maintenance. I agree 'right to repair' seems a little off, but its a subset of 'right of self-determination', i.e. basic liberty, which from the outside looking in is preached about a lot but not very practiced in the US.
i mean we could. but it seems like you wouldnt want that since your brining it up yourself. seems very like a very easy thing to ignore since it doesnt seem any malicious. unless there are trademarks im not aware of.
If you just make a post about healthcare in the USA being awful, it's highly likely to be removed/booted off the front page. Call it a "right to repair", though, and you're hitting the sweet spot for HN.
Why is it different?
Who is the manufacturer of the item to be repaired? How is the manufacturer preventing repair? What design decisions artificially limit repair to parties other than the manufacturer? How does the manufacturer use existing regulation (eg DMCA or copyright) to prevent repair or access to information necessary for repair.
All of these questions make sense for right to repair, and are mostly nonsensical in this case, since drug companies don’t manufacture bodies.
Essentially the instructions and tools to repair your own body are restricted and only accessible to those who can afford to pay for the health care systems processes. Have an obvious infection? Spend a ton of money going to a doctor to get a prescription to give to a pharmacy to dispense at highly marked up substance that’s easy to manufacturer at a tiny unit cost. You had no right to cure your own infection. You had to pay dozens of middle men for something straight forward.
I’d note that in most of the world you would just go buy the antibiotics directly from a pharmacy for almost nothing.
Now - I’m not saying self medicating with antibiotics is either good for you or the world, I’m saying at least in the US, you don’t have that right.
Believe me, I agree that this is a problem. I have lived in other countries, and have seen how broken certain aspects of US healthcare are especially with regards to cost. These problems are just totally different than “right to repair” if in no other way than that the legal solutions would be completely different. For example any right to repair legislation would have no bearing on drug prices.
If it was easier to get the federal approval required to produce medications wouldn't that lower the cost of producing those medications?
That's some very careful cherry picking you've done there with your example. Maybe next time you're in a pharmacy you'll take a look at the aisles and aisles of over-the-counter medicines and devices available and do some thinking about your belief that "instructions and tools to repair your own body are restricted and only accessible to those who can afford to pay for the health care systems processes".
I don't understand what you're trying to say, because there are low potency options that are available over the counter, that means the most effective treatments are correctly access restricted?
Can you name an over the counter antibiotic that successfully treats a staph infection? or strep throat? or sinus infection?
I am saying his cherry-picking of antibiotics specifically while he make dramatic claims is ignoring all of the over-the-counter mediation sold in the pharmacy. There are quite a lot of illnesses one can treat without ever talking to a doctor. I don't know what other people's ratios are, but my use of OTC medication and "tools" is maybe 10x more frequent than stuff that's gatekept by a doctor.
He is also ignoring the reasons that we have ended up with this system. Some of them are kind of dumb, but some of them are about valid problems. That's very different than what "right to repair" is fighting, which is mostly about exploitative companies trying to maximize revenue at the expense of their customers.
[Edit: misunderstood who replied; correcting pronouns]
its kind of wild your trying to create sides in this fake debate and then somehow trying to side with repairing electronics over peoples health?
why though lol, do you hate sick people? or just have no empathy for people in general?
who cares about technicality and semantics and whois using whos catch phrase better... we should be discussing an issue far more important, like so much more important its funny to even compare. then being able to switch your iphone battery out.
I have no idea why you take any of that away from what I wrote. I am in favor of both repairing electronics and people's health. I'm just saying that the right-to-repair framing for medical stuff is not a great way to look at it.
What illnesses can you treat over the counter? I can’t think of a single intervention other than symptom mitigations, many of which aren’t particularly effective compared to generally safe prescription medications at even that. The only thing I can think of are bandaids and wound dressings.
Is this some sort of definition game? I'm using illness to mean "an unhealthy condition of body or mind", and treat as "to do something to improve the condition of an ill or injured person", both dictionary definitions. If you really can't think of anything that drug stores sell without prescription that qualifies, maybe try taking a stroll down the aisles sometime.
I’m saying it doesn’t map to “right to repair.” A mild anti inflammatory medicine to relieve mild headaches - ok great. But that’s not a repair of any sort. An antibiotic cures an actual illness - something that requires repair.
As I said pretty clearly I’m not saying this is right for the individual of the world, but a right to repair yourself would allow open access to medication at the lowest prices an open market can bear and medical knowledge offered a broadly accessible way for most conditions not absolutely requiring a specialist, like most surgeries or complex interventions. The amount residual is probably a lot larger than you would believe. In fact almost all medical services are routine and don’t require a specialist of any sort, not even a PA. Again, I’m framing the concept of right to repair your own body not taking a stance on whether it’s a good idea or not.
Id note in closing that in a discussion of the definition of right to repair, it’s an odd question to pose “is this a definition game?” Yes - that is the topic!
You are making up your own definition for "illness" here, so you can cherry-pick.
The whole notion of "repair" in relation to bodies doesn't make much sense. Bodies self-repair. All medicine is just aiding them in that.
And if you're not saying this is right for the individual or the world, I don't understand why either of us should waste further time on what appears to be just a game, the part of "definition game" you somehow managed to ignore even while quoting it.
Please stop trying to co-opt established term for your pet cause.
In some ways, the gatekeeping of healthcare should be met with more resistance than repair an item that someone else made but you now own.
Your body is something that belongs to you, you technically manufacture, yet you are legally forbidden from applying known and often the most effective remedies to your own body if you don’t engage with a giant government-sanctioned system that can charge you whatever they want.
To top it all off, the rules are not even consistent and are motivated by reasons other than what is best for the patient.
For example, taking more than the maximum dose of Tylenol at can cause long-term or permanent liver damage. This is still available over the counter with no restrictions whatsoever.
On the other side, we can see that the DEA was created to enforce drug policy (or rather racism and classism via drug policy) which has the effect of making access difficult for many people who are prescribed scheduled substances. Yet we have a opiate crisis that managed to appear within this draconian regulatory environment.
Then we have situations like the FDA which been aware of the dangers of high sugar in diets, but the sugar industry’s dollars into “studies” managed to convince them that “dietary fat” is the problem.
The “for your own good” argument only works if they actually acted for our best interests, but time and time again, it’s shown to us that this is just a big game in which we have no say in, yet we are all subjected to.
We should have the right, as an informed human, to independently decide what we want to do to or put into our body, just as we should have the right to choose what we wish to do with our possessions.
> In some ways, the gatekeeping of healthcare should be met with more resistance than repair an item that someone else made but you now own.
That is never the case. Humans are very risk averse and risk of broken product is infinitely smaller than risk of screwing up with your health.
That's how we ended up with the straightjacket system. Rachet goes only one way, there is a crisis (e.g. thalidomide in 70s, snake oil salesmen and so on), we rachet it up to ensure confidence.
The consequences of a single case of problem have a decade long consequences. E.g. baby formula was contamined in China (wiki "2008 Chinese milk scandal"), 300k were sick, six children died. Baby formula is not trusted even a decade and half later and imported stuff is used.
> Who is the manufacturer of the item to be repaired?
This isn't important to the point, but for the sake of argument; lets say society is the manufacturer.
> How is the manufacturer preventing repair?
Local legal regulatory groups that deem some method of fixing (treating) some defect (health condition) too dangerous to allow.
> What design decisions artificially limit repair to parties other than the manufacturer?
Company (local agency) wont allow my neighborhood repair shop to buy (or make) replacement screens (medications) or batteries (contact lenses).
> How does the manufacturer use existing regulation (eg DMCA or copyright) to prevent repair or access to information necessary for repair.
Existing is a stretch considering the age of the DMCA. But drug scheduling in the US is an equivalent and equally nonsensical application of logic for example.
> All of these questions make sense for right to repair,
I know how to fix it, but because of laws and regulations and decisions outside my control, I'm unable to apply that knowledge.
> and are mostly nonsensical in this case, since drug companies don’t manufacture bodies.
The DMCA is your own example, and it's a law built and advocated to enable control, and reduce supply artificially.
There's definitely a point to be made and a discussion to be had about the origins for control over health and medical issues. I think permitting the sale of snake oil is harmful to society, and we should prevent it so people don't have to become experts in human biology to not get conned. But treating chronic health conditions shouldn't be as hard as it is.
The core of right to repair, is you shouldn't be allowed to prevent me from, or make it and possibly difficult for me to improve something I own and control. I think saying I own and control my body and health is a fair assertion, so the same argument applies; it's wrong to make accessing repair options for my health as hard as it is if I'm willing to try to fix it.
I'd say the same concepts behind right to repair apply more so to the body because I can't just replace it.
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I am legitimately unsure why you felt the need to make this comment.
If you were uncomfortable posting this it here because you think that someone else might take it an endorsement, then why did you post it? People post things they find interesting and disagree with all the time. What are you afraid of?
This is hackernews. I had problems in the past that people mistake this for an endorsement.
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Could you elaborate on what you find “vile and disgusting“ about that meme?
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It is probably impossible to write a good comment that has as its thesis a characterization of the whole of HN as a community.
Please don't sneer, including at the rest of the community.
https://news.ycombinator.com/newsguidelines.html
I didn't necessarily get the same impression from the comment thread that you did, given that there are a range of responses. But I will say that the idea of intermingling the ethos of Right to Repair with the ethos of Self-ownership[1] is one of the most decidedly "hacker" novel ideas I've encountered on Hacker News and I don't have words for the joy I experienced browsing the submission.
[1] https://en.wikipedia.org/wiki/Self-ownership
Many hackers are now old enough to have reflected on dystopian science-fiction and come to the conclusion regulations are useful, sometimes. And many hackers realise most people are ignorant most of the time, us included, and do not trust amateurs to have all of sufficient knowledge, thoroughness, and benevolent intentions to manufacture powerful stuff you put inside you. I don't think curiosity is discouraged, just the impetus to turn it into action in this case.
Are you British by chance?
No, although I live there, was that a very British comment?
Tell us what you think after you try out their dental cream and DIY pharmaceuticals.
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I think there's a balance that some people don't appreciate. Hacking your health has some additional risk vs. some external system or process; your health is often irreplaceable, and you might not get a second chance if you screw it up. I think you should be a little more careful with DIY pharma than you would other things. And I think you should be very careful about evangelizing it to other people.
It is the case that some people get so wrapped up in overcoming authority that it becomes the driving factor behind what they support and what choices they make. It's essentially the same thing you say you're disgusted with: it's not about figuring out how and why, it's wanting to be right and the authority to be wrong. The exact same behavior, just from the other side of the fence. Call this a strawman if you want, but I'm still asserting it's fact.
This is why I don't immediately see groups like four thieves vinegar as positive. I don't know if the stuff they're doing actually works or not. I suspect that you don't know this either. It might work. They assert that it's simple and just use their stuff and boom, daraprim (or whatever). But what happens if it doesn't? The result is not a failure to adapt some device to do something it wasn't intended to do, or get data from a device the manufacturer would rather sell, it's direct impact to your health.
Specific to their microlab, my immediate questions are around sanitizing or disinfecting it. I have skimmed the documentation and parts list. They recommend using 'water'. There's no discussion about distilled vs. deionized vs. tap water. There's nothing here about ensuring the mason jars and tubing are clean to any particular standard. I haven't seen any discussion yet about cleaning the reactor between batches, in terms of ensuring there is no residue from the prior batch. I sure hope I've just missed it, or this is called out as a 'human tasks' in each recipe. Contamination is ok (ish) with a Coca-Cola Freestyle machine at McDonald's. You can tolerate your Coke tasting like 8 other drinks. I don't think it's OK when making sofosbuvir.
I think you should be able to do just about whatever you want to with your own body. Please be careful. But I don't think you should be able to set yourself up as a counterculture medical authority and not have people ask questions about it, especially because a lot of people _won't_ ask questions.
You've right to assert that, and I agree with you. there's not nearly enough information provided to be used safely as a tutorial. But that's the whole point of my disgust with the shift in tone away from hackers.
you wrote
> Please be careful. But I don't think you should be able to set yourself up as a counterculture medical authority and not have people ask questions about it, especially because a lot of people _won't_ ask questions.
And I agree, following this as written is dangerous. But knowledge is dangerous, the core of the hacker ethos is that knowledge and information should still be free.
I take issue with the hand wringing, and the lack of curiosity. The closing of the top comment for the thread is
> This kind of arrogance and lack of respect for the discipline required in organic chemistry is going to result is someone getting hurt.
This could serve as a prime example the epitome of counter hacker-culture
It's fine to say, this is dangerous, and to roast the author for a badly written guide resulting in an apparent indifference for the safety of others... but to frame it as a lack of respect for the discipline (and expatations and rules) isn't hacker culture.
Never felt too much at ease with the DIY medicine arguments. I mean, I agree on principle with the idea of not being at the whims of the pharmaceutical industry, but they always give me the feeling of being just one step away from going fully "Cancer/HIV is caused by mobile phones and you can cure them with vitamin C" and "Covid is a big pharma conspiracy" kinda people.
I am not sure how you got to this slippery slope that doesn’t have a good reason to exist.
This movement is not about filling capsules with powdered ginger to treat something that it’s unable to. The goal is to synthesize molecules that have been studied and that we know work as a replacement for having to pay a doctor to get permission to buy them.
If the problem is "having to pay a doctor to get permission to buy them", we should fix that through policy. I agree with you that this is a problem. Some things shouldn't require a doctor's involvement like an ultrasound, even medication. If I kill myself with taking a certain med (which many people are intentionally doing with drugs already), that would be my own fault.
Some people could manage their health much better than the current system. Other people would totally try to cure their cancer with vitamin c.
A parallel that comes to mind is "accredited investors". These are people that have chosen to opt out of the guardrails and been allowed to by fulfilling certain criteria. Maybe something like that would make sense for medicine.
It's starting to be the case. Patients with terminal cancer can opt into experimental treatments.
Lots of existing medicine is a crap shoot -- look at the possible side effects many of them have (including death).
I don't believe in the conspiracies you listed, but I absolutely believe there are plenty of conspiracies in plain sight (AMA restricting the number of doctors and fighting against single payer, the FDA being in bed with big pharma, etc).
We all should have the right to control our own bodies (which extends to recreational chemicals). For those compounds that are not yet vetted, we should have the right to make informed choices.
I think it's very sad and a big problem that people like you don't have the capacity/willingness to appreciate nuance
A lot of people with rare conditions are pretty much forced to become experts on it to where they're reading the literature and going to conferences. The medical community isn't set up to help you if you have an uncommon issue and aren't a relentless self advocate.
This looks more like a libertarian nightmare than an anarchist dream. I couldn't care less what you inject your body with, and will always support open science, but this is no solution to the USA's disastrous healthcare system.
The real "right to repair your body" necessarily involves a socialized healthcare system, like in the rest of the West.
So if they are going to do this, can we get a signed affidavit from then that they will not call 911 and use taxpayer funds for a transport to the local ER when things go south? If so, then I'm all for it.
Guess we should ban woodworkers, skateboarders, and everyone else taking risks from getting healthcare for it then.
Since this group probably has a high propensity to consider all taxation as theft, I think it applies better here.