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

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

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

It’s its own rant

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

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

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

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

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

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

My wife is T1 too and I wholeheartedly agree. The development in that area is outrageously slow and locked down (and then there's healthcare providers with whom you have to fight tooth and nails to get your ancient pump upgraded - another story and country-specific).

Can xdrip control the dispensing of medicine or just do monitoring and alerting?

If it was the best healthcare in the world, we’d have the best outcomes and we don’t even have that for rich people. We have a (non-metric) shit ton of world class research universities and highly respected agencies like the FDA and NIH but Elon Musk, the richest man in the world, can’t even get the mental health services he obviously needs.

I’d obviously rather go to an American hospital than a hospital in most of the world but spending a lot to cover up a shitty system isn’t as good as a functioning system.

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

Did you really call the US healthcare system the best in the world?

Pirating movies and games can't kill you

Home brewing seizure medication can

The all new sudafeb....like Sudafed but with a D at the end because they're chemically the same just with a D at the end.

I wish there was some kind of open source collective organization under which you could release anything with eternal open source license that'd be free forever. It could be anything from software, tech or medicine like penicillin so that megacorps could not benefit from it in any way.

The New Text Document makes this.

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

This is extremely dangerous and also something I feel must be considered a natural and obvious extension of a right I believe to be fundamental: bodily autonomy.

There is a significant distinction between the right to bodily autonomy and the right to distribute quack medicine. And that's sort of the rub. As soon as you start marketing your product to third parties under false pretexts, we're not longer talking about an individual's right to self. And we get into an even more tangled web when we start talking about health care for children or the elderly, who lack the mental acuity to make informed choices.

Also this is cyberpunk as hell and aesthetically I’m so here for it

Everyone wants to get the military grade Sandevistan drive. Nobody thinks they're going to succumb to cyberpsychosis.

I think an off the shelf microlab that can reliably synthesize a particular medicine is something that's commercially viable, which is probably a safe middle ground here and sort of what they're proof of concepting.

Rather than putting together a DIY lab like this, a pre-made kit that makes one medication would easily make a ton of meds available. Not just here but all around the world.

I would say the next step would probably be to create a certification process for microlabs categorizing their safety and effectiveness

I agree with the idea of bodily autonomy. Above all, someone should have the right to do, or not do, whatever they want with their own person.

Whether that is to listen to doctors advice, buy pharmaceuticals and self-administer as prescribed, or even end your own life, and everything in between.

Quick disclaimer, suicide should still be evaluated by a psychiatric professional, and simply being suicidal shouldn't necessarily mean that nobody can, or should stop you from committing that act. I'm mostly referring to medically assisted self termination, after the appropriate safeguards, checks, and balances have been cleared. Simply wanting to off yourself without being cleared as having sound mind should be something we, as a society, should address carefully, with the assistance of mental health professionals.

With all that being said: I probably would DIY some pharmaceuticals. Anything that's an opiate or other restricted substance, definitely not. But if I can buy the ingredients without needing a special permit or license, I definitely would.

What's broken is largely insurance setting prices.

I don't see this fixing it.

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

Yeah..... This is a bit sketchy. Pharmaceuticals aren't just something that an amateur can make by following step by step instructions. Even something as simple as baking a cake requires some basic experience to know when things are going right or wrong.

Even maintaining the calibration on a CLR requires some background experience, let alone building and programming one all on your own. With your actual reactor being as small as a mason jar, it means the margin for error is going to be small as well.

This is neat for people with a background in chemistry, but I don't really see it as anything but dangerous for the general public. They also are fudging their math a bit to make things seem a lot cheaper. Reagents can be really cheap at bulk prices, but you have to spend the time looking for them, and they aren't equating the cost of a trained chemist making these medications.

Might be safer for HRT, than having to trust a 3rd party to buy it from if you live in a place that can't get it thru insurance or Dr.

I see drug lords getting into this if it is feasible and it isn't a good scenario. It would paint them as real saviors and make the situation more unstable.

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

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

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

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

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

I know someone whose life is made substantially worse because they have a lack of access to healthcare. They live in Europe and can't get access to the specialized medicine that they need in the timeframe that they need it in. I'm not saying that socialized medicine is bad—I'm actually all for it—but it needs to be implemented well for it to actually work. This is just my anecdotal evidence to say that just because everyone has access doesn't automatically mean it's adequate access.

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

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

This isn't really a new thing, but the ease of access certainly is.

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

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

TLDR: Don't buy, make.

That was due to additives to ethanol cleaning agents - it was a thing done on purpose

As is typical of Piracy.

You've gone to a malicious website. Now you've died.

See, the risks of surfing the web incorrectly are slightly different than the risks of creating medicine incorrectly.

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

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

This could be very good for people with orphan diseases(diseases that are rare enough that they aren't profitable for private companies to research)

Also, having an orphan disease often results in insurance companies denying coverage for everything because they don't have a policy written up for that specific disease.... so there's no script for the workers to follow. Then your doctor has to argue with them, which can take weeks, in the meantime you have no medication.

Yeah, I'm not mad or anything. I wish I could've cooked up my own meds when insurance denied me life giving meds because they'd never heard of my disorder.

If stuff like this already happens to the experts.

Keep in mind that almost all drugs are made in India. There is a huge issue with corporate corruption as well as poverty wages that prevent workers from ever whistleblowing. It’s a disastrous combination. It’s frankly a miracle that things don’t go wrong more often.

The corruption runs so deep that pharmaceutical factories keep exploding and wiping out whole towns every few years.

I would be at least a bit worried too, but unfortunately the only reason this exists is because corporations decided to wall off access to producing their drugs legally so they could continue to exploit vulnerable people for profit.

For a lot of the people using this tech, it's the only way they'll get life saving medication, and without it, they'll die. If that's the kind of gamble they have to make, a possible risk of impurities or negative reactions is better than the considerably less desirable option of death.

Well that's the coolest part about this, everything is based on the existing research.

The drugs they're making are the exact same chemical compounds formulated by the drug companies, and contrary to popular belief, the compounds can actually be relatively simple, it's the process of finding which compound that takes the most money from R&D.

So if you have 2-3 very standard chemicals, with well known reactions and outcomes, and you have the exact blueprint of what the final result should look like, and you can chemically test it afterward to see if it combined as expected, then anyone who has enough reason to use this instead of traditional means (i.e. being priced out of lifesaving medication completely) can be reasonably confident it will work.

Obviously the people who would benefit most from this technology would prefer a doctor and pharmacy to be involved as well. The point is that personal preference doesn't really mean much when the preferred option is inaccessible and the alternative is death or a dramatically reduced quality of life. You do the best with what you have.

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

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

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

and

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

Isn’t it the case that a lot of the research is funded by governments through universities and then the pharmaceutical companies come in and scoop up the IP and charge crazy prices.

How to solve it is simple, our tax dollars already pay for the research, the results are public property

They could do that, but the drugs are still much too expensive comparatively, and it doesn't include many drugs, especially the ones that are the most absurdly priced.

For instance, after looking through various articles on him and scraping together some of the data, out of the medications referenced as being some that he's made:

Misoprostol (Abortion Medication) - $14.90 on CPG - $0.89 via MicroLab

Sovaldi (Cures Hepatitis C) - Not available on CPG (normally $84,000) - $70 via MicroLab

Kalydeco (Treats Cystic Fibrosis) - Not available on CPG (Normally ~$500/day) - $10/day via MicroLab

Daraprim (Treats Parasitic Diseases & Some AIDS Patients) - $2443/30 pills on CPG - $80/30 Pills via MicroLab

Epinephrine (Treats Allergic Reactions, AKA epipen) - Not available on CPG (Normally $650-$750) - Initially $30 via MicroLab ($3/reload after)

The pharmaceutical industry is so screwed up, and these prices only show it more clearly.

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

There's a difference between injecting unknown crispr mutations and replicating known chemical compounds. I would guess the main danger here is the impurity

There is a difference between knowing which medicines to give someone. And then having that knowledge of which to choose (after seeing a healthcare professional), and then being able to buy (make) any brand of that item.

I have to agree. They really think everyone out there knows enough chemistry and medicine to pull this off. Even meth heads blow their house up occasionally. There is so much that goes into building a safe chemistry lab and you shouldn't risk it. Hobby chemistry is one thing but you can't skip school and become a professional just by buying a kit.

As opposed to dying from the disease you already have because the traditional pharmaceutical industry makes the drugs you need out of your price range?

It won't be a life long ailment for long if you're going to die from a lack of care soon anyways.

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