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404 Media on The Rise of DIY, Pirated Medicine (to get around prohibitively high drug costs). For instance, Sovaldi cures hepatitis C and costs $84,000…but you can make it at home for about $70.

Discussion  5 comments

Jason KottkeMOD Edited

From chemist Derek Lowe writing in his Science blog In the Pipeline about the group profiled by 404 Media here:

Back in 2018, the anarchists were all about Daraprim and Epipens, fighting the man by enabling everyone to make these in their garage or something. But here we are in 2024: how many people have taken homemade Daraprim? How many people have been saved from a life-threatening allergic reaction by a homemade Epipen? I'd guess very close to zero — so what has all this accomplished? The people who have been helped by these drugs have taken the ones made by boring pharma companies (generic manufacturers though, for the most part, not discovery-driven ones). Boring!

Lowe concludes by calling the group a "joke" and "performance art".

Andy Baio

I view this as a form of activism and as a provocation, not "performance art": they're demonstrating that pharmaceutical companies are artificially grossly inflating the costs of some life-saving medications that cost a tiny fraction of material costs to produce, which then puts real public pressure on companies to lower costs, insurance companies to pay less, and states to enact regulation to cap costs.

See the current efforts in New York, Colorado, and and the federal government to cap the costs of Epipens. Even though it's unlikely anyone used it in practice, their DIY Epipencil project showed that it was possible to make an injector for $30 instead of $700, without the economies of scale. This got tons of media coverage, giving patients and lawmakers the ammo to then implement these caps.

Jason Koebler wrote about the safety criticisms related to his Four Thieves article in 404 Media's latest Behind the Blog. "There are people who are dying because they can’t access drugs that would save their lives that a skilled chemist could make at a DIY lab for a few bucks. I think that proving this out as a theory is in and of itself very important, because it lays bare the way that the United States in particular has valued pharma company profits over human lives on an unimaginable scale."

Mark Van Cleve

The reagents are such a small percentage of the cost as to be insignificant. It's the billion dollars of research that it can take to develop a drug and get it through FDA. And, I'm not taking something that somebody made in their garage, sorry.

Jeremiads Edited

This is why the for-profit model should never have been entertained for healthcare.
The logic of profiteering is just too seductive. Increasingly, all over the world, people are forced to put up with their entrepreneurial classes looking over at the US and realising how much money can be had in products that people literally cannot live without.

Of course, many medical professionals will be annoyed by this, but unless they’re personally acting to defy big pharma, their retorts are hollow. They’re the ones who allowed their professional ethics to be so shamefully wrecked, and now they’re throwing their hands up and pretending this is the only way things can be; even worse, some of them, like this Derek Lowe person, try and mock people for shoving the absurdity of it in their faces. The guy doesn’t even mention in his blog how much Gilead charges for sofosbuvir, never mind any of the other nastinesses that the company has to its name. Yet he’s bitter about being called a shill. It’s beyond parody.

To Mr Lowe, I’d say: if this a joke, that’s because public medicine in so many parts of the world has become risible. And if it’s performance art (talk about a revealing retort, by the way, using “performance art” as a pejorative), that’s because someone needs to demonstrate how weak the logic of the profiteer really is. The professionals aren’t doing it. And to call the collective’s work “boring” because it hasn’t done the job that he and his colleagues have also failed to do, despite being duty-bound? That’s shameful.

If this is just a publicity stunt, fine. It’s clearly discomfited complicit professionals like Lowe and put them on the defensive, which means it’s working. If the protectors of medical science won’t provide healthcare as the human right that it is, then someone else will try to. I hope Lowe and others like him end up annoyed and shamed enough to really fight to change things, but I’m not optimistic, because here we are in 2024 and the profiteering is only getting worse. Boring!

Reply in this thread

Ben Kiel

Reminds me of Autonomous by Annalee Newitz

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