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

OK, this is only tangentially related but it has been on my mind lately and I need to rant:

I am T1 diabetic. Over the last decade, a LOT has happened to improve my life, especially in regards to no longer needing to check glucose levels with blood, as glucose sensors you wear on your arm have become ubiquitous.

It started with a dedicated device that you needed to hold up to the sensor to get a reading (much nicer than pricking your finger) to that sensor being able to notify the dedicated device of high/low glucose values (yay! Sleep through the night, knowing you'll be woken up if something is wrong) to the sensor now constantly streaming glucose values to your phone.

Which is fantastic.

In theory.

In practice, there are two companies making these sensors (OK, there's a couple more, but they suck way more and are much less commonly used).

And both of their closed-source apps suuuuuuuuck. They do the bare minimum and nothing more. (Actually, it's worse than that. Ask me if you want to know. It's its own rant.)

Then there's xdrip+, a FANTASTIC app made by diabetics for diabetics. Instead of just showing you "this is your glucose" and sounding an alarm, once, when it's required, you can (just off the top of my head): Set an arbitrary amount of alarms with their own behaviors, which can be configured to vary by time of day; show the glucose everywhere (notification, lock screen, home screen,...); mute alarms for a custom time; do not sound an alarm if you're trending in the correct direction fast enough; do not sound the alarm multiple times if your are jittering around the threshold; notify other people automatically in case of emergency; and roughly 1000 things more. The app is well maintained, and of course open source.

Can you guess what the problem is?

That's right, manufacturers disapprove of using this app. For the worse one of the two sensors mentioned, the community reverse engineered the communication and it is now working perfectly with the app. For the better sensor, they can't and won't due to fear of legal repercussions.

It's my health. And I need to decide between worse hardware and useless software.

There's no technical reason for this. I dream of the EU passing a law that requires manufacturers of wearable medical devices to publish the comm protocols and to legitimize use of third party software.

Rant over.

I fucking love pirate medicine. Fuck the US healthcare system, what good is having the “best healthcare in the world” if you can’t even afford mediocre healthcare?

Piracy is how you got Netflix.

This is how we'll change the pharmaceutical industry. They'll overreact and Streisand Effect this and it'll blow up. Become normalized. The open source tech will improve.

This is a good thing. Period.

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

Would I do this? Probably not, maybe for some medicines, that are easily made administrable from bulk chemicals but likely not. But behind all rights stands bodily autonomy. It is your flesh and not mine. If we don’t want people doing this themselves the lever we should use is easing access to expert made medicines. Desperate people do stupid things.

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

...well, this is a good way to shine the spotlight on a massive problem. I'd be pretty hesitant to take DIY meds unless it was life-critical and my only option (which... lots of don't have that option, and just die after hitting the health paygate...). The value here is its potential to slap some sense into the US and get our broken-as-fuck healthcare system caught up with the rest of the world so people don't need moonshine insulin or w/e in the first place.

That this conversation is even taking place is testament to how horrible our current system is.

This is super cool and helpful as a resource but I really don't think people without a chemistry background should be doing anything more than following precise instructions, hopefully with some form of verification test at the end. The idea to have people without a chemistry background use a forked version of askcos and just run with it is a little scary.

The affordable Controlled Lab Reactor for diy is fantastic for helping people follow precise instructions to the letter just all of those instructions should be meticulously vetted by actual chemists and have some safeguard tests at the end where necessary. It seems the founder wants that vision too at the end of the conference just there's not enough of a community yet to support it.

They have released a guide on making a CLR (basically several different pieces of lab equipment controlled to automate some of the process) and software to run on it to assist in the process of making the medications. Specifically to try and improve consistency of the medications produced.

It's a really great cause. Worth reading the article. If someone had to pay hundreds of thousands of dollars cost to access life-saving medication, and they couldn't afford it, something like this could legitimately save their life.

I believe every American knows someone whose life is made substantially worse because of a lack of access to healthcare.

I want to set this up and learn to use it. I want to keep it and maintain it and wait. Because I'll inevitably hear from someone that they can't afford their life-saving medication.

This seems both awesome and dangerous. The two analogies that come to mind are home canning and home brewing. They’re both generally safe and easy. But every so often someone gives their family botulism.

With the same risk to blindness as moonshine?

This is fantastic. If you know what the problem is, because you've been diagnosed or whatever, and you know what medicine will do it, and you are capable of making it, I see no issue at all with this. You don't need a PhD in computer science to browse the internet.

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

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

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

Hail Four Thieves Vinegar Collective!

More DIY, right to repair, open source living.

You wouldn't download a car life saving medicine!

When a person has nothing left to lose they will take chances that otherwise they wouldn't. If we weren't living in a corporatocracy, perhaps there'd be no demand for this sort of thing, but we do and there is.

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

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

He does mention the fact that medicine research is hard and requires money but doesn't explain how to solve that. This is a big argument of big pharma prices, they say it finances future research. I think a good example is how incredibly fast we got a COVID vaccine. It happened because private investors had massively invested in research platforms and they invested because they are expecting gains.

Here’s a fun thought, the drug you make fails but doesn’t kill you.

Instead you now have another life long ailment that cause pain/degradation of daily life.

Sounds like a great idea.

Idk. Medicine is one of those skills where I prefer someone that has studied for 7 years vs me who watches a 15 min how to video and read webmd

While this is definitely an interesting proposition, for most people in the US wouldn’t something like Mark Cuban’s CostPlus drugs website be a more reasonable solution?

Hope John Green is aware of this. He's fighting tuberculosis globally!

Nitro Clorox Queen 👑! For your COVID! It's better than over the counter hydrocloroqueen!