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The rise of DIY, pirated medicine: Four Thieves Vinegar Collective has made DIY medicine cheaper and more accessible to the masses
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- Title
- 'Right to Repair for Your Body': The Rise of DIY, Pirated Medicine
- Published
- Sep 4 2024
- Word count
- 2835 words
My only concern is bad reactions, dangerous outputs, and that sort of thing. Sure the lab accounts for it with the recipe and instructions, but a lab also tests their product, somebody with one of these may not have the means to.
Otherwise I think this is awesome, and a great way to help people help each other and themselves. It's basically like how people used to make poultices, but with organic chemistry.
An additional concern is this mentality (emphasis mine):
There’s a reason many drugs are gated behind a prescriptions from licensed medical specialists and outcomes monitored by those same specialists. There’s a reason filling prescriptions is overseen by licensed pharmacists. That reason is (generally) safety, not profit. Those checks are especially important when there’s legal direct-to-consumer advertising of medications (in the US) and Joe Schmoe has his degree from TikTok Med School.
I mean, it costs me $40 to see my psychiatrist, and I have pretty damn good insurance. I totally agree with where you're coming from, but I understand where this person is coming from too.
My SIL had seen 6+ doctors before someone wrote a scrip for a migrane medicine that works. She would have made bathtub migraine meds after 3 doctors telling her to take ibuprofen again with the pain she was in, wasting hundreds of dollars.
Both drstone and your perspectives feel like reasonable perspectives to me.
I think the thing I'd like to see, to mitigate the potential for bad drug reactions, is info/resources provided along with the kit and medication recipes about pharmacology. To help people make more informed decisions, like precautions, contraindications, side effects (and understanding of thr underlying pharm concepts).
Realistically, this lab kit is niche enough that anyone going out of their way to create one is already going to learn a lot about the medications they're making. But also, the description of the inventor's cavalier attitude when presenting on stage (popping a pill, tossing out random medications to attendees) rubs me the wrong way a little. I assume he's wanting to convey that the lab and recipes are safe to use. But it could also convey the message that the medications are inherently (always) safe (for everyone). This could give someone, especially someone sick and desperate and afraid, the wrong impression.
Expense of the diagnosis itself, both financial and time, is indeed a problem. To me, the solution is to push harder to expand and improve the medical system rather than to advocate bypassing it completely for DIY. Train more professionals, better triage of to free up specialists from unnecessary work, educate people where they can go for different things instead of the ER. The layperson can barely identify all relevant and irrelevant symptoms, their timelines, and articulate them accurately enough for an efficient diagnosis. That’s assuming complete honesty, which is harder and harder to assume, especially when people come in “knowing” what they “need” and what to say to get it.
The problem with that is it will take at least a decade, and that is if coordinated very effectively. It's an optimistic scenario basically. DIY medicine, on the other hand, takes at most a few days, and requires no political struggle that rests on a big if. Plus, many people need the medicine now, not years and years later.
I'm not saying I disagree with the idea, as the previous is a much better option. However, realistically speaking, it's not nearly as attractive as the latter. So, it's not a realistic counter or solution to the DIY medicine's problems. One could even argue that educating the public on dos and don'ts of this would be much more effective in preventing potential harm as much as possible.
It would certainly help, drug advertising is a huge problem.
Self-diagnosis seems somewhat less so (as a layperson so take with appropriate salt), at least for relatively begnine things. I feel like having a relatively authoritative online source that laypeople could run through which would help them screen for common ails, and steering for professionals when needed (hey this could be serious), could be helpful. I know half the time I'm self-diagnosing it's because figuring out if a thing is worth seeking or just part of life... it really sucks hearing 'oh thats normal, come back if its still doing that in a month,' even from just a time spent perspective.
I feel that a whole lot of the safety stuff with a fair number of drugs could be distilled down to just the pharmacy self-service after a blood pressure/weight/pulseox check, then a digital flowchart against person's current meds and medical history.
That said, in a saner system, it would still be peferable to not need bootleg meds.
There are absolutely barriers to getting prescriptions for certain medication that are not based on safety, but rather on political will. How proportionate that political will is with actual safety concerns is highly variable, of course. The DIY medication I'm most familiar with is trans women getting DIY estrogen through the gray market, which is quite common in my understanding. That example should make it more obvious how the barriers to getting a medication prescribed can be completely out of sync with any actual health and safety concerns.
I'm under the impression that the DIY estrogen is made from raw estradiol powder from a normal drug factory and a carrier oil. There's no drug production happening there, just mixing and sterilization.
Ah, fair enough, I didn't realize that! Hopefully the general point about access to medication still stands, though.
Certainly - in this case, I think it strengthens your point. The health and safety concerns with mixing two known-safe ingredients and sterilizing it are even less than the health and safety concerns with synthesizing your own estradiol molecules, and yet it's still hard to access for many people.
Yeah, from what I've seen, it is usually made from Chinese-sourced estradiol powder. A lot of the gray market HRT drugs are also just "actual drugs" from Türkiye resold to Europe (like anti-androgens or transdermal estradiol patches).
Yeah I think this is where my gut feelings lean too far towards rule following. I worry about the safety but I'm aware that meds can be life or death, and HRT can be one of those.
I thought the “(generally)” qualifier I used was enough to cover for the handful of controversial issues - in particular gender affirming and abortion drugs - but for such a sensitive topic I should have acknowledged these more explicitly. The additional presence of politics pressures does not mean the absence of medical reasons either. My main point there was that it’s not just Big Medicine and/or The Man wanting to their fingers in the pie.
I understand your points and agree safety is a concern, but safety is also a political consideration/trade-off in the end, and the distribution of access to specific medical interventions is political/cultural in general (a good example is that of abortion medicine given in the article). I think it's a bit comparable to debates on safety vs. freedom w.r.t. other, non-medical technologies.
Implementing informed-consent models of medical care could also reduce waiting times at public mental health services and lead to harm-reduction in some cases. For example, where I live, even my GP could prescribe the hormones which I use to self-medicate (I could pay the medicine privately), but it is understandable he does not do that since he does not want to be held liable, as there's no informed consent model for gender-affirming care here. Which means if I wanted to get a prescription from a reputable source (as taking home-brewed substances and gray market drugs is always riskier), I had to go through the psychiatric system which already is at capacity.
So I think in some cases it would be better to allow (more or less informed) people to take more responsibility for themselves, but I'm probably pretty biased, and I also get it's not an easy topic without its contradictions.
I suspect that the existence of those last two things are good reasons to remove the checks. For too long, we have nurtured an attitude that individuals do not need to be responsible for their own medical treatment. Far, far too many people never bother to learn anything about their illnesses and simply defer mindlessly to whatever pills or procedures their doctors throw at them. These people are like children with helicopter parents. On a societal level, the only remedy is to remove these 'safety' barriers and let people make medical decisions for themselves.
This probably sounds kind of harsh, and I can appreciate that there is more or less a certainty that those on the low end of the Dunning-Kruger curve will harm themselves if allowed to pursue medical treatment without regulation. But I think most people who have thought about these issues focus too much on this explicit harm, and ignore the implicit harm that comes from gatekeeping valuable medications behind ridiculously conservative safety precautions, inattentive or incompetent doctors, and a culture of patient helplessness. It's easy to say 'well, fix those issues then', but then again, those issues are subtle, systemic issues with no easy solution. Liberating medical care, particularly drug access, from regulation is something that can be achieved much more easily. With sufficient political will it could happen right now. Without sufficient political will, counter-economics will have to suffice.
I'm probably a little bit biased due to my experience with chronic illness, but fundamentally, we should all be able to act as our own doctors in a pinch. This requires a certain degree of education, and to the extent that it's not provided by secondary school (it's crazy to me what passes for 'health' education in the US, how little I learned from those classes, but I digress), it can be taught outside of school or accrued for oneself through books and online research.
Based on the experience of doctors during COVID with idiots showing up incontinent due to self-medicating with ivermectin from farm supply stores, I'm wholly unconvinced that the average person can be trusted to independently manage their healthcare. There's not just an individual risk from someone going into cardiac arrest due to accidental overdose or giving themselves a lifelong ailment from rare side effects.
Every self-medicating patient that shows up to a hospital is wasting limited public resources. Widespread over-the-counter antibiotic use in some countries is creating deadly superbugs which threaten everyone.
The average person is in no way qualified to self-medicate or even find the right resources to treat their own conditions. There are good reasons it's considered unethical for doctors to self-medicate. If highly educated doctors regularly get diagnoses wrong, why would the average uneducated person fare any better?
I really hate this narrative presented absent highlighting agricultural use of antibiotics, which is more likely the true source of the majority of antibiotic resistance in the world. Estimates in the US place approximate agricultural use between 70-80% of total country use. Worldwide estimates are tougher to calculate as many growing countries have absolutely no regulation, but one such estimate on a global scale placed the average antimicrobial agent consumed per annum of animal produced (per kg) varied across the animal species with values of 45 mg/kg, 148 mg/kg, and 172 mg/kg associated with cattle, chicken, and pigs, respectively 1. To put this in human terms (rather than mg/kg) that would be approximately 7.5g of antibiotic per year (the equivalent of several therapeutic regimens depending on the antibiotic). Of particular note among these numbers, global chicken population was estimated at 33 billion in 2020, far outnumbering humans, let alone those who misuse antibiotics 2.
In agricultural situations it is primarily mixed with feed or water and used as a prophylaxis (sub-therapeutic levels) - use in this fashion is quite literally the worst possible way to abuse antibiotics when examined through the lens of antimicrobial resistance. Unfortunately, strong lobbying powers, a capitalistic world, and the general difficulty of measuring how much this has contributed to resistance makes this hard to quantify in comparison with human misuse. With all that being said, the total vector magnitude multiplied by the kind of misuse and the magnitude likelihood for it to result in antimicrobial resistance (sub-therapeutic use is magnitudes worse than therapeutic but unwarranted use) very clearly points at agriculture as likely being the largest vector of resistance.
Hi, I’m a clinical pharmacist who specializes in infectious disease
Though I’m sure it contributes to some capacity, I highly doubt that agricultural antibiotic use plays a significant role in the generation of the multi drug resistant bacteria we see in healthcare, relative to the role that over use of antibiotics in medicine plays
Most agricultural antibiotics utilize amoxicillin, which is of the most narrow spectrum antibiotics in the hospital
The way bacteria develop resistance is through the expression of specific enhancements that either neutralize the drug from inside, decrease the drugs ability to get inside the cell, or increase the rate at which drug is pumped outside the cell
The exact mechanism employed by bacteria varies, but generally amoxicillin has a very low selection pressure for more than one type of resistance, if even (as there are quite a few other more serious bacteria out there that simply are not covered by amoxicillin)
This is opposed to our more broad spectrum agents that try to cover every bacteria under the sun. Now with our broad spectrum antibiotics, there is lot more pressure for bacteria to develop multiple resistance mechanisms, which is really bad and THOSE are the bacteria that we are worried about
I am not going to get into the nuance of potential ways agriculture is impacting antimicrobial resistance, which it is, I just would argue that the clinically significant antimicrobial resistance is more so due to human consumption of antibiotics
we don’t tend to see patients come in with antibiotic resistance, unless they have an extensive history of antibiotic use
This is simply not true, and the first source cited talks about how plenty of other antibiotics are used, including poly drug mixes. In your country it may only be amoxicillin (albeit I seriously doubt it) but that is certainly not true of the world.
A cursory Google search of an antibiotic of your choice plus agriculture in the news section is likely to reveal examples of nearly any drug (or resistance emerging in agriculture), including last line defenses like carbapenem.
Use of antibiotics within the context of livestock is a contributor to worldwide resistance but right now there it is not clear whether human use or agricultural use is the dominant driver of antimicrobial resistance. The research is definitely ongoing.
Considering that AMR is driven heavily by primers and has a large degree of worldwide spread, the actual effect of agricultural antibiotic use vs healthcare antibiotic use makes it difficult to pinpoint the "source". Especially considering both the natural occurrence of AMR in nature and the wax/wane pattern of gaining/losing resistance.
Antimicrobial heteroresistance complicates the question heavily, and is likely a driver in the patterns witnessed in healthcare settings where the MIC increases as selective pressure of antibiotics is introduced during treatment.
You're absolutely correct that we unfortunately cannot measure it and that it's exceedingly complicated! I pointed this out in my original comment because it's messy. I tried to do my best to state that it's a personal opinion based on what I've read on papers in the field (if you haven't yet, please go read the articles I've linked if you want a better overview).
On the economic side of things, I think some cross-collaboration would be extremely useful. Estimates exist on how much is used in agriculture - as previously stated in first world countries where we can reasonably track this, such as the united states, 70-80% goes to agriculture (worldwide estimate of 73% in this paper), but these numbers are somewhat soft for many countries and could use some more resiliency (I'd love to see total production estimates based on output from antibiotic manufacturing plants). Regardless, by numbers alone it's a bigger problem. But it's not just a bigger lever (70% vs. 30%), it's also a longer lever, because we're talking about using the antibiotics in notably different ways.
Most existing scientific papers talk about the process of antimicrobial use in agriculture, which is where the evidence I think really shines. Of note, there is a big difference between prophylactic use in human as compared to being mixed with water or feed which can also cause antimicrobial resistance through soil, water, and other ecology such as animal food chains. This is touched upon in great detail in the paper I previously linked. Use in this way is notably different than use in humans and importantly involves processes which provide much stronger pressures for evolution and antibiotic resistance. This longer lever (more evolutionary pressure) combined with a larger lever (70% of worldwide production being used in agriculture) almost certainly points towards agriculture being the larger contributor.
But, as you rightly stated, it's really hard to get an accurate measure out of these pieces of information. Antibiotic use in humans is fundamentally different, and there are selective pressures in humans which don't exist in animals - namely that rather than chronic low environmental pressure we are dealing with short high burst pressure which kills off most/all of the bug unless it happens to have some kind of resistance (stronger selective pressure but with less likelihood of survival). Invariably both of these breed unique kinds of resistance in microbes. We're also talking broadly about antimicrobial resistance in bacteria when common narratives often overlap multiple specific problems. One problem is total resistance observed in bacteria in the wild (contributes to overall difficulty of treating a bacterial infection). Another problem is total resistance observed to a particular drug by bacteria in the wild (penicillin, for example, being quite useless today as compared to its original introduction). Yet another problem is bacteria which are resistant to more or all available antibiotics (multiple resistance in a single strain of bacteria). All of these problems have different selective pressures and thus are solved by different solutions. Certainly the last example is the most complicated and likely the most human-created, but even that is very difficult to pinpoint because the two arms (human use and agricultural use) can have effects which influence each other depending on the strain and drug combination because bacteria can pass on genetic information to other existing bacteria, any resistance gained can therefore affect both branches and amplify problems.
Regardless, I think there's a much stronger ethical reason to not use antibiotics in agriculture than there is to not use antibiotics on humans, and thus misuse should be even less tolerated. Combine this with the fact that the majority of antibiotics are used on agriculture (and not humans) provides a strong impetus to solve this problem. I strongly believe that ethically we need to point this out when we talk about solving antimicrobial resistance problems because it is almost assuredly a larger contributor to our overall problem (notably this a very human-centric problem; we don't talk much about how this is bad for animals who happen to get infected with multiply resistant strains and even then it's usually only because they got infected with bacteria that can infect humans too). At the very least we need to mention it whenever we mention human misuse of antibiotics and antibiotic stewardship.
As I understand it, bacteria gaining antibiotic resistance due to prophylactic use in agriculture is a problem, but it's unclear how much it affects humans. While many diseases are zoonotic and come from livestock, the average bacteria is unlikely to be a major pathogen for humans.
If some random Cattle bacteria that can't infect humans begins resisting penicillin, that particular antibiotic resistance would never show up in a human medical clinic.
Oh and because I was a bit busy I couldn't dig up any other links, but here's another great summary paper on antibiotic use in agriculture
Thanks for mentioning this as well. I'm aware and agree that agricultural antibiotic usage is the primary factor in generating antibiotic resistance.
That said, there are specific cases where bacteria have developed antibiotic resistance purely due to human misuse of antibiotics (early cessation, lack of compliance, patients refusing injections) like Gonorrhoea, and we should be just as concerned about those. As far as I know, there's no agricultural profit incentive causing Gonorrhoea to become harder to treat...just humans making poor medical decisions.
Yes, to be clear I'm not advocating that we give up the human-based interventions we've studied and architected or that we shouldn't continue to pursue smart use of antimicrobial drugs (all drugs, really). The reason that I felt need to highlight this is the context in which you presented your argument - 'widespread over-the-counter antibiotic use in some countries' is not likely a particularly large vector for the creation of superbugs and it's likely not even the largest human vector when we talk specifically about superbugs (clinical misuse in patients presenting with multiply-resistant strains of bacteria is almost certainly a larger vector for added resistance).
It's true, there are always the idiots. But I think the 'average person' you mention isn't going to want to independently manage their healthcare. As I stated, the vast majority of people are really mentally checked out from this sort of thing. The prevalence of people poisoning themselves with ivermectin is quite low, it's just a phenomenon that got overblown by the media. And if anything, the root cause there is terrible messaging from the Trump administration and right-wing media, which is probably more worthy of your attention than people's right to self medicate.
Also, and I feel like I have to bring this up every time someone mentions ivermectin, but ivermectin will probably be ultimately shown to have efficacy against long COVID (not the acute or post-acute phases of the disease) - not as an anti-viral, but as a TLR-4 antagonist. Depending on the exact manifestation of long COVID, ivermectin could be a useful immunomodulator. I think low-dose naltrexone is probably slightly safer with a similar mechanism of action, but it can be hard to find a compounding pharmacy to provide that, and for some ivermectin might be more accessible.
Ever non-self medicating patient that has to show up to the hospital for something that should be over the counter is also wasting limited public resources. If I have another kidney stone, I'd really love to be able to pick up some subcutaneous ketorolac and ondansetron, but instead I have to haul myself into the ER to get an IV. Antibiotics are also frequently widespread due to overprescription, including systemic practices that would be greatly ameliorated by developing treatments that are currently gray/black-market. Doctors were content to throw round after round of vancomycin at my C. Diff instead of using FMT, for instance.
This is probably true for some conditions, especially emergent ones. But often, highly educated doctors get diagnoses wrong because they are only spending ten minutes thinking about the patient. If you live with a chronic illness, there is a good chance you're already more familiar with what is usual or unusual for your condition, perhaps more self-educated on potential alternative treatments that a doctor in an overly litigious society is afraid to pursue. It's easy to look at self-medication is foolish, but the risk-reward calculus is different than you'd expect when you're the one living in constant pain, debility, etc.
I agree. This is why significantly more doctors should be trained in the US. There is a massive supply shortage which has produced a ripe environment for profiteering.
In the abstract, self medication is fine as long as it's not easily accessible and dangerous medications are restricted. Obviously we're fine with everyone having access to acetaminophen to treat their own pain even though its easy to overdose and kill yourself via liver failure.
Personally, I'd draw the line at making opiates widely available. None of the research I've read indicates that easy access to opiates is a net benefit to the public. Even if on an individual level, 99% of opiate prescriptions are used safely, there's a massive risk associated with easier access. Increased access to fentanyl has allowed far too many people to self-medicate down a very dark path.
Then, you have chronically ill people who know so much more about their illnesses than any doctor ever will, and doctors refuse to listen to the patient's research because they don't have an MD at the end of their name, and/or are AFAB, or because doctors often have ego's bigger than the letters at the end of their name afford them.
Consider people who have EDS, POTS, Fibromyalgia, or MCAS that doctors think are "social media" illnesses, that genuinely affect people in painful and dangerous ways, that doctors refuse to diagnose, despite all symptoms lining up, or because they're "trendy" online. They're trendy because we're learning more and more about these illnesses and people are sharing their information online, since it's impossible to get education from your doctor.
Or people who are autistic/ADHD/AuDHD who self-diagnosed as adults who have not been able to get a formal diagnosis (or won't get one for specific reasons like the ability to emigrate), but need accommodations at work, which you can't get without the formal diagnosis.
You also have the other Zebra patients who become permanently disabled or die because doctors want to believe that everyone is a horse, and don't want to try something new.
From what I understand, it's even worse than that. Many people don't take the medication they're prescribed, or they stop taking it when they feel better.
This article has some quotes in it that make me feel like I'm in an alternate timeline. Beyond Belief — How People Feel about Taking Medications for Heart Disease
Patient disbelieves there's anything wrong with them.
> A 56-year-old patient of mine has hypertension and hyperlipidemia. His electrocardiogram and echocardiogram suggest he's had a myocardial infarction. He refuses stress testing and cardiac catheterization but agrees to take an aspirin, a statin, and an angiotensin-converting–enzyme (ACE) inhibitor. On a follow-up phone call, though, he says he's changed his mind. “I feel fine,” he insists. > “I'm glad you feel fine,” I say, “but our tests suggest there's been damage to your heart.” > “You know computers often get things wrong,” he tells me. > > “I want to keep your heart working as long as possible,” I say. > “Doc,” he says. “No offense to you, but if it ain't broke, don't break it.”Having a heart attack is `too easy`.
Patient feels statins are addictive.
> Another haircut, a different hairdresser. He mentions that his triglycerides are “through the roof.” His internist has prescribed a statin, which he takes “intermittently” — such as when he overeats. When I say it doesn't work like that, he says he knows. He says the problem is that he was an alcoholic. I say I don't see the connection. What follows is a rush of sentiment: controlling his cholesterol or blood pressure feels like something he should be able to do on his own. He feels that relying on these medications is another form of addiction, that he has brought this on himself so it's his responsibility to get himself out of it, and that taking medications is a sign of weakness, a cop-out.I take medication for low blood sugar, people have expressed a similar concern about dependency. I think more education on the topic would help the people the information was able to reach.
Absolutely this. I take statins for hyperlipidemia and people freak out when they hear it. I get zero side effects and my cholesterol levels are under control, but people see it as "the easy way out" and therefore the wrong decision.
Edit: I'm not self medicating, they were prescribed to me.
I can't agree with you about online research. The well of truth is so tainted by misinformation, quackery, disinformation, and commercial incentives of all kinds that you're better off going to a physical library. There are still questionable texts and magazine articles, but at least you can have less concern that your pocket will be picked in ways that are outright hazardous.
I've also had experience of medical misdiagnosis by an inattentive doctor, and fully own the fact that I found it more compelling to ignore the problem to the point of permanent injury than self-advocate. I find that situation has given me more sympathy for those who fall back on helplessness or become prey to unhelpful (at best) self-treatments. There are endless reasons why people can't or don't become their own health experts - lack of education, time, and/or money; denial; misplaced pride or shame; discrimination; geographic barriers; childcare limitations; and so on.
We both come from the privileged position of having enough education and experience to discern better courses of action. Exposing everyone who doesn't have the knowledge or resources to manage their own care to fraud and lies is fundamentally unethical and cruel. It's an invitation to public health disasters like failure to vaccinate children for measles, or fraudulent and mislabeled drugs.
I'm not saying the regulatory state, Pharma, and the healthcare industry are blameless. Goodness knows, we've got an addiction crisis from insufficient gatekeeping and corrupt incentives, millions of people who can't get necessary medicines due to slow regulation, cartel pricing and intellectual property constraints, but the solution isn't to throw all gatekeeping in the bin.
You seem to already realize that as a whole, the healthcare industry and regulatory state currently have heavily compromised interests, so it's surprising to me that you want them to be gatekeepers. The notion that 'they should be allowed to gatekeep now, and I promise we'll fix the system of incentives and quality of care as time goes on' is not at all convincing to me, or to a lot of people. This attitude towards the broken system is one of the major reasons people have become skeptical of mainstream medicine.
People have a fundamental right to determine what happens to their own body. I understand the temptation to simply force everyone to do what you know is best for their health, but political channels required to do so also open up the possibility that someone malevolent will end up in that position. This is true of any other aspect of a person's private life, why wouldn't it be true of medicine as well?
I agree that medical misinformation (and disinformation) is a problem, but we should be looking upstream, not downstream. You don't fix that problem by gatekeeping potentially 'dangerous' medical decisions, you do it by figuring out why people keep falling for lies and quackery. I think vaccine skepticism is a good case study for this. It's pretty easy to trace the sociopolitical antecedents here, and there are a lot of people who essentially have been inculcated with an adult form of oppositional defiant disorder who are just going to reject anything the government recommends that they do. But how far are you willing to exercise the power of the state to railroad these people into vaccinating themselves or their children? Would you support a vaccine mandate?
Back when COVID-19 first mushroomed into a massive political conflict, a lot of my friend group (who lean liberal/left) were open to the idea of a vaccine mandate. For the public good, right? But as I went to them, I'm coming to you and asking you to set aside your preconceptions about vaccines for a moment. Consider this.
I am not an anti-vaxxer. If I had a child I would vaccinate them for all major diseases, in line with what the establishment currently considers best practice. However - I suffer from severe ME/CFS. I am seriously disabled as a result of this disease, a neuroimmune disease which is barely understood by doctors and affects between 1 and 3 million people in the USA alone. I did not receive the COVID vaccine. The pattern of immune hypo/hyper-reactivity and inflammation in ME/CFS causes many sufferers to have severe adverse reactions to vaccines in general, not least of which the vaccine for COVID ('long COVID' being essentially isomorphic with ME/CFS). In the patient support forums I hang out in, this is a tale I've seen told over and over again: someone has mild ME/CFS, they can still go have a regular or part time job, a social life. They may not even be formally diagnosed. Then they get the COVID vaccine, and all of a sudden they can no function. Severe myalgia, exertion intolerance, brain fog. Often this is why these people are first joining these support groups.
There's no research available to clarify what are technically anecdotal experiences. But among experts in ME/CFS, most would agree that vaccines are potentially dangerous to ME/CFS sufferers. The immunologist I see, who is a leading expert in the ME/CFS field, told me point blank not to get vaccinated. Still, this disease is only just beginning to get any sort of recognition from organizations like the CDC, and there is a strong stigma against research into it (as their is against any research which questions the prevailing institutional narratives about vaccines in general). It is extremely difficult to fund ME/CFS research - right now it has one of the lowest ratios of NIH funding to disease burden. Back when Fauci first became director of the NIAID, he basically torched the ME/CFS program. Of course now he won't shut up about the importance of investigating post-viral diseases, after COVID made the topic unavoidable, and now that he's retired and isn't obligated to do anything about it.
So in light of the above, do you think a vaccine mandate would take ME/CFS into account? Do you think expanding the influence of an already mismanaged bureaucracy is likely to lead to a more accurate appraisal of these highly politicized issues? Furthermore, even in the unlikely event that we manage to carve out an exception somewhere, how do you think things would play out on the ground, among officials and professionals who are not perfectly apprised of every exception?
Infuriatingly, even if I could get the COVID vaccine, I don't actually even need one. I receive weekly IVIG therapy, which is basically just an infusion of a wide range of antibodies pooled from the general population of blood donors. I already have antibodies from the COVID vaccine (and from COVID itself!) in excess, since I am administered a hyperphysiological dose. But in my experience, trying to explain this to anyone (especially bureaucrats) is a doomed task.
This all seems like a bit of a digression, since originally the topic was gatekeeping of medical treatments. But in the ontology of medical ethics, right to refuse a treatment is essentially the same as right to access a treatment. Either a person has autonomy, the right to choose, or they don't. It's one of the insane hypocrisies of the medical establishment that 'right to refuse', regardless of outcome, is still a hallowed principle (despite considerable political pressure), when its mirror image 'right to access', regardless of outcome, is essentially ignored. We recognize that the ultimate responsibility for a medical choice lies on a patient - except when that entails accessing a non-prescribed treatment, in which case fuck 'em. Why exactly the establishment chose to embrace one and not the other should be pretty obvious - only the 'access' half of the binary really impinges on the monopolistic economic role of medical regulation.
I understand where you're coming from, but I just don't see the issues you're describing in any of the rules or regulations around vaccine mandates. All of the ones I'm aware of have medical exemptions which your situation should fall under.
Because the foremost principle in medical ethics is "do no harm", and any medical intervention carries risks. Especially when a treatment is off-label, there are serious liability issues involved. It's not a profit incentive issue; the ethical principle predates capitalism by centuries.
For what it's worth, the link you provided allows exemptions for a "medical condition that prevents them from receiving a vaccine" - my IVIG therapy doesn't prevent me from receiving a vaccine, it just makes it redundant to do so. This is what I was referring to by 'doomed task', because in my experience, people take rules at face value and will not take small logical leaps to uphold the spirit of a rule beyond how its written. Separately, while my ME/CFS does prevent me from receiving the vaccine, I assume there is a list of qualifying medical conditions and it's unclear whether ME/CFS would be on it (it almost certainly would not have been 10 years ago ).
Now in fairness, as the guidance points out, all but three states allow exemptions for 'religious or philosophical reasons', which in practice means there is no vaccine mandate because anyone can claim a philosophical exemption (assuming it works how I think it does). But in my earlier post I was trying to examine how far we can alter a person's medical choices against their will - an actual vaccine mandate which does not allow arbitrary exemptions is something I could easily imagine happening, and I think it's worth seriously considering your stance on that now in service of my broader point about medical rights.
As far as I know, 'do no harm' applies only to medical professionals. If I want to pursue a medical treatment without prescription, I am not asking a doctor to violate their principles. At best I am asking someone who produces drugs (for instance) to provide them for me - are they beholden to those principles? If we take the original article about medical piracy seriously, then I'm not asking anyone for anything. The only liability is of myself to myself. 'Do no harm' is kind of weirdly facile anyway, because what constitutes harm is so subjective. Ultimately the principle becomes beholden to what is legally considered harmful, which is subject to the same bureaucratic false incentives that I've already brought up.
This is a slippery slope hypothetical. Those kinds of mandates don't exist. I actually have a close friend with an autoimmune condition that easily got an exemption from a vaccine requirement. In the real world, medical professionals understand that healthcare is individual. I am strongly in favour of vaccine mandates with reasonable exemptions. They're good social policy.
Others have covered the ethics and such of a mostly/full personal-responsibility approach already.
Setting all of that aside, I would hope anyone who has “done their research” and chooses to DIY is also only doing it to themselves and, most importantly, going to DIY the handling any related complications instead of using the usual shared finite resources (medical staff time, medical facilities, taxpayer subsidies, insurance coverage, etc); personal responsibility, after all.
Some people would rather have the option to self-medicate than be locked out of any hope of treating something because they can't afford the insane cost of healthcare. Things shouldn't be that way, but they are. This is the natural consequence of the broken for-profit medical and pharmaceutical system we've developed.
It should be possible to synthesize testing kits as well.
I would hesitate to use a drug that was not tested or whose inputs and byproducts were not all safe.
I have a friend who works in pharmaceutical manufacture (I won't mention the company) and some of the horror stories I have heard from her about how common fuckups, mislabeling etc are in the manufacturing process are terrifying. Definitely at a point now where I trust pharmaceutical QC so little that I would feel equally as safe taking pharma branded product or something someone cooked in a bathtub. It's all humans doing dumb human stuff all the way down.
Call me skeptical (h/t Derek Lowe). The typical chemical synthesis has ~ 60 - 70% yield on a good day. When you repeat that for multiple steps, there's a great deal of purification and lots of nasty byproduct reactions. I'm curious about Chemhacktika, but likewise suspicious about machine learning for chemical synthesis without having a handy way to make sure nothing explodes during reactions or produces the wrong product.
Add in the fact that many active drug molecules depend on having the right stereochemistry. It's difficult (and potentially illegal) to source pharmaceutical-grade reagents as an individual buyer. As Lowe mentions, it's not just the presence of an active ingredient, but also the pill formulation for long release, the prep for an injection, and other added steps.
Don't get me wrong, if I couldn't afford or obtain one of the several drugs that are letting me function, I'd be playing with this. [One of them has a trifluoromethyl group, and the chemistry needed to make that or its precursors is not available or remotely safe for benchtop chemists.] But I wouldn't give the products of the Microlab to anyone else outside of a life-and-death situation.
Before you tell me Derek Lowe is just a shill for Big Pharma, I agree that Big Pharma is committing egregious cartel pricing offenses. That's not an excuse for promoting the notion that people can or should, as individuals, attempt what it takes a well-equipped collective endeavor to do safely. The necessary effort is well within reach for impoverished developing nations, or cities, or universities, or possibly even the scale of a "Dallas Buyer's Club"-sized group. [Side note: The story of the script for the Dallas Buyer's Club film is an interesting read, and a further cautionary tale about using the Internet to figure out what drugs to take.].
There's a lot of development happening in flexible automated chemical synthesis. Microfluidic reactors for flow chemistry aren't really home-scale devices, but they have the precision and safety to manufacture pharmaceutical-grade products. It's not quite at the equivalent of tabletop 3-D printing for molecules, but it's getting there.
It's cool that Four Thieves Vinegar Collective is doing effective publicity work on pharma pricing and accessibility as well as the dire need for changes in intellectual property law, but I'll treat it as performance art for the time being.
Yeah, I think I've read stereochemistry is actually an issue for clandestine-chemists producing methamphetamine, and also the Thalidomide (Contergan) scandal illustrates the importance of stereochemistry etc.
This is a factor even with legal amphetamines for ADHD -- here in Germany, you can't get a prescription for Adderall, which contains a mixture of both variants of the amphetamine molecule, but you can (if you're under 18, at least) get prescriptions for just dexamphetamine (which is only the "right-handed" variant, since that's the one of the two that has the most positive effect and the fewest negative side-effects). Whereas in the US there are dexamphetamine brands out there, but they're far less common than Adderall and typically more expensive. Though Vyvanse is also quite common in the US, and it's processed into dexamphetamine inside the body.
For what it's worth, a little L-amphetamine mixed in with D-amphetamine provides significant benefit in some subtypes of ADHD. While it has some cardiovascular side effects, L-amphetamine is somewhat better at promoting wakefulness and sensory attentiveness, and reducing fatigue, which are predominant issues with the sluggish/inattentive subtype of ADHD, as well as for things like treatment resistant depression and fibromyalgia for which amphetamines are sometimes prescribed off-label. I'd say even racemic (1:1 D:L) amphetamine has certain use cases.
That's interesting! I'm not very directly knowledgeable about this, so all that I know is just what my psychiatrist told me. He did mention that it's possible to get a mix of L and D from a compounding pharmacy they work with (those are a lot more common here in Germany than in the US) but I don't think it's covered by public health insurance in that case.
I don't know if it's exactly an issue, but levomethamphetamine is just an OTC nasal decongestant. It's Vicks VapoInhaler.
Yeah, I agree that synthesis is generally a lot messier/inexact than these dude are portraying it. But then again, it's highly dependent on the particular reaction. Sometimes in synthetic chemistry, you run into reactions that just work, with few significant side products and good tolerance for varying conditions. As long as these reactions are sufficiently validated I don't see the problem. Ultimately, there are some drugs that are totally unfeasible for home-synthesis, and others that happen to be a perfect fit, with many more that occupy some space in the middle.
I also think its possible to incorporate purification and assay steps in the whole picture. I've done a little home synthesis in my day and using a combination of reagent testing and thin-layer chromatography, I felt like I was able to get a decent albeit crude picture of how the reactions went. Both of those techniques are cheap, accessible and easy to operate.
Hell yeah. Already know someone who built one of the Microlab and that's all I'll say on that. Fuck big pharma and fuck the capitalist model of medicine specifically now and forever.
This whole thing was a fascinating read, and I'm curious to look more into DIY medicine. Healthcare for profit is a scourge of the modern world, especially when a pharmaceutical company can just slightly tweak the molecule and patent it all over again. Pirating drugs is a wonderfully cyberpunk alternative.
This stood out to me as well. Laufer is obviously an idealistic man, and I like that he hasn't just reduced O'Day to being "an evil capitalist," I have a lot of respect for people that can look at human actions with an objective eye.
Autonomous by Annalee Newitz explores these exact themes. In this near future setting, economic unions and IP coalitions have consolidated more power than regional governments. One of the characters in the novel is a "drug pirate" that manufactures generic versions of medicine to sell at more affordable prices on the black market. Highly recommend it.
Cool! I've added it to my to-read list, thanks :)
That was a fascinating read, I'll definitely look into it more!
Full support for this kind of thing despite its risks. More power to anything that puts a stake in the heart of medical capitalism
In so many ways, wow.
So, my perspective is coming from multiple angles: I'm an ex-Paramedic who wanted to go to nursing school, I'm an electronics tech / home lab guy (home lab in the sense of electronics / makerspace, not as much in the commercial-server-rack-at-home meaning of homelab (no space intentional as that is how the term is typed for that meaning, usually), as someone who loves the world of 3D printing and evolving accessible at-home manufacturing technology, and as someone who loves reading near-future cyberpunk / dystopian books.
This is a capability / technology that I have seen in fiction for a while now. Corey Doctorow had pharma/drug printers in the book 'Walkaway' (great read by the way), and it has been a fictional technology that I have read about and thought - you know, all the precursor tech does exist for this to become reality. And here we are. This feels, to me, like the early days of 3D printing. Yes, people have been making drugs at home for decades (far more commonly recreational / for-profit controlled substances) for what we typically think about when we hear 'drugs'. I liken that in comparison to how people have been building stuff with garage wood shops and welders for decades as well - and then comes 3D printing to make 'making stuff' an order of magnitude more accessible, admittedly with a (currently) far more limited scope of application and materials (you don't tend to see engineering-grade or high load-bearing manufacturing coming out of home 3D printers).
3D printing achieved a 'critical mass' of adoption around the world and experienced an impressive degree of advancement, proliferation, and utility.
I see this as a very early step towards a home drug printer that can accept feedstock (various precursors and reagents) and print on demand (more like synthesize and react on demand, but the 'print' terminology seems like it fits) whatever pharmacological molecule you want. I can see such devices being developed open-source to gradually integrate chemical analysis tools to do qualitative testing for the produced drug in the same way (as a general theme) that we have seen machine vision and lidar integration in 3D printing for fault detection.
I'm excited to see where this goes. Yes there are safety issues, yes there is abuse potential, but I think there is a place and a need for this to develop. The driving issues, primarily that of for-profit medicine literally allowing people to die who could be saved for the sake of ever-greater profits, are already causing great harm. As such, I view this with an eye to the principle of competing harms.