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That seems both super dangerous, and super awesome.
It's not something that we should have to consider. But this is the world we live in, now; legitimate supply lines of life-saving medicine have collapsed for a fair number of people. I understand why people might be troubled by someone actively going out and advocating this as opposed to simply making the information available, but if you're offered medicine with 95% efficacy that you can afford and use vs. a well-regulated 99.99% that only exists theoretically...well, come on.
The cost of medicine I require to be functional enough to hold down a job has risen so much that the copay is the equivalent of the entire out-of-pocket cost from a few years ago.
The medication was discovered in 1969. The application method, which is the shitty excuse for the patents protecting its $2,200/month price tag, was first approved for use by the FDA in 1979. The drug has been for sale in it's current form for over a decade.
Consider this story that mades the rounds recently as well: people using antibiotics marketed for fish because they can't afford or get access to anything else.
https://motherboard.vice.com/en_us/article/bjxwma/people-are...
I think a middle ground is sourcing them from private chemists on Alibaba and then getting spectrometry tests done to verify purity
Agreed. When you actively advocate for this, do you face moral responsibility when someone prepares it wrong and dies?
(I’m pretty sure the legal answer would be yes on so many fronts)
> super awesome.
This is not super-awesome. Humans have made incredible progress by specializing and optimizing, and this process improves productivity, efficiently, and (most importantly when it comes to medicine) safety.
The idea that we will have people taking the risk of getting sick or dying because they are not able to manufacture drugs with the same purity and potency as pharmaceutical companies shows there is a huge problem with the status quo.
>but if you're offered medicine with 95% efficacy that you can afford
But it's not clear at all this is the case here. The article itself notes that it's unknown whether anyone has ever used any of these DIY medicines/medical devices, let alone how well they actually work. For all we know he could be pushing complete nonsense that kills people.
When drug companies issue patents, do they not also publicise production methods?
If this is anything like open source in software (in the beginning) then many either never get to compile the dependencies needed to build from the source or run into hardware incompatibilities and incompatible derivate packages with all the ensuing bugs like blindness, deafness, and more serious malfunctions. And when it works the functionality will be severely limited. I'm half joking, but this will need a huge caveat emptor.
It's dangerous so far. I'm still all for better information and more diy. People will understand their health and real value of products better.
> “To deny someone access to a lifesaving medication is murder,” he said. And “an act of theft [of intellectual property] to prevent an act of murder is morally acceptable.”
I agree with the conclusion, but for a different reason. "Theft" is the wrong way to think about IP. The economic function of IP is not to protect producers from consumers, but to protect producers from free-riding by other producers.[1] Thus, for example, stealing pills does not offend a drug creator's IP monopoly. Teaching people to make their own pills, who couldn't afford pills anyway, does not really do so either. It doesn't implicate the real purpose of the patent monopoly, which is to keep some other company from profiting by free-riding on the R&D of the original drug creator.
[1] To use a copyright analogy, copyright does not exist to protect content creators from downloaders, but to protect them from companies like Youtube, which make their profits by selling other peoples' content.
Open Insulin @ Counter Culture Labs: https://experiment.com/projects/open-insulin
If you want to look at templates for your own immunotherapy, CRISPR, optogenetic tools etc.: https://serotiny.bio/notes/proteins/
Which, once built can be then be ordered as DNA, shapeways-style using: https://serotiny.bio/notes/pinecone/
The cure for certain kinds of blindness, just approved by the FDA yesterday is, in total, a well-delivered sequence of ~10,000 base pairs of DNA (mfg cost @ 7¢/bp = $700): http://www.businessinsider.com/spark-therapeutics-hereditary...
We used to have government-funded research programs at universities, now we have for-profit big pharma which by definition creates treatments that cost more. It could be argued that this was by design. So open sourcing cures like this is a natural free market reaction to that.
Since most of the cost of any new medication today is research, we should decouple that cost from production.
The main reason this doesn't happen is that conservatives preach personal responsibility, so want people with hepatitis C to pay for their own treatment at $80,000 a pop. But even if the cost to develop that cure was a billion dollars, that's a tiny amount for the government to absorb. We should be having a space race to cure the worst diseases and then give those cures to the world for free (or nearly free), much like penicillin or the polio vaccine.
Please keep in mind that I'm not politicizing this - it's already been politicized. I'm just explaining what happened.
>A decade ago, while he was volunteering with aid workers in El Salvador, Laufer said a nurse at a remote health outpost told him she’d run out of antibiotics and birth control pills — cheap, generic medicines that even her suppliers couldn’t immediately replenish. “This is ridiculous. They should be able to build their own simple lab” to make the pills, he recalled thinking at the time.
This is pure crazy. If these drug were generic (versus patented), the problem of getting them to El Salvador is not a price problem, it's a supply chain/infrastructure/corruption and theft/political (in the case of birth control in a very Catholic country) problem. Some of these drugs are highly complex and building, supplying, and feedstocking chemicals for a lab to make them is even harder than finding the money for a $5/pop or less prescription
For people who are interested, it's referenced in the article, but NurdRage did a synthesis of Pyrimethamine "from scratch".
Only took 2 years and ~$22k, but of course, replicating his synthesis would be a little bit easier... for another PhD Chemist.
https://www.youtube.com/watch?v=ddCuWX4vtOA&list=PLU79801KtV...
Interesting assertion from the FAQ on Michael Laufer's website[1]:
> Q: What about quality control? A: It’s important to know that making small quantities of a chemical is vastly different than making it on an industrial scale. The chemistry isn’t even the same. This is a big reason why chemical engineering is an entire field of study. With smaller reactions, while you do have to be more precise in your measurements sometimes. There are fewer things to go wrong.
Why would making small quantities be vastly different than making it on an industrial scale?
I've heard the same thing about cooking and baking. Supposedly, if a recipe calls for 1 tablespoon of baking powder, then you scale it up 50 fold, you can't simply use 50 tablespoons of baking powder. The claim was that you had to use way more baking powder or much less (I forget which). It sounded like nonsense, but now I'm wondering.
Synthesizing some simpler drugs sounds feasible even with amateur equipment, but still far from trivial. But I can't see that working reliably without the ability to do proper analytics on all steps. And regular people don't just have an NMR spectrometer at home.
Chemical reactions usually don't have a single product, other side reactions are possible. And they also don't use up 100% of the educt, so you have to get rid of that as well. Purifying your products and making sure they're actually what you want is essential.
Getting the dose right is also hard if you don't know how pure your product is, and if you don't have analytical scales (or work at a very large scale that a kitchen scale is enough).
I can't imagine the size of the overlap between people savvy/interested/experimental enough to attempt this sort of remedy and those desperately poor AND ill enough to do so. While the idea of bio-hacking as a hobbyist or proof-of-concept is becoming less and less uncommon, and people generally appreciate efforts to raise awareness toward a broken and inefficient healthcare and insurance system, attempting to "market" that DIY process using a fancy name, logo, and "mad scientist hacker anarchist intellectual" persona seems disingenuous at best, and potentially dangerous.
Honest question: What does it even mean to be an anarchist these days? What is the default "anarchist"? Because Wikipedia isn't really helping.
>Then he took another sip from a flute of Taittinger Champagne.
What?
>Swaggering, charismatic, and complex,
Gag me.
>Michael Laufer has become a fixture in the growing biohacker movement ever since he published plans last year for a do-it-yourself EpiPencil — a $35 alternative to the pricey EpiPen.
That couldn't possibly go wrong, eh?
>It’s not clear whether anyone has actually ever used a homemade EpiPencil to prevent anaphylactic shock.
So nobody's quite crazy enough to try?
>But that seems almost an afterthought to Laufer’s bigger goal — trying to build a DIY movement to attack high pharma pricing and empower patients.
Or, judging by the tone of this article, his attempt to build his own ego.
This is ridiculous and crazy. It's incredibly dangerous to claim to have produced something life saving but not have any actual testing to back it up.
Even lesser drugs that are just designed to lessen symptoms or relieve pain could go horribly wrong if they aren't prepared properly. We have such strict medical requirements because of that.
If anyone's interested in a fiction that partially explores this try Corey Doctorow's new novel Walk Away [1]. It's about people who 'walk away' from regular society. They to create their own high tech society because they completely ignore IP rights, and instead aggressively share techniques using the wiki model.
I imagine a curate Wiki of credible home non-invasive therapies and management regimens would garner more positive response than "anarchic" direct confrontations. There are tons of such therapies underwritten by medical researchers across countries. These infantile theatrics mostly subtract from sound cost containment.
DIY pharmaceuticals is ....well it sounds immensely dangerous. Not only is the chemistry frightening but quality and chemical availability. It reminds me of Naturopaths and herboligists claiming to cure and treat ailments with supplements. As much as I hate the pharmaceutical industry, I think it's best for now to leave the drug making to them.
Given the level of education nowadays and the wide access to knowledge, I'm convinced that it's legitimate that the average person should at least have the basic medical knowledge, let's say equal to what a doctor in the 30's had known, and be able to treat 90% of the diseases that he/she encounter in his life.
There's also a much more conservative and narrowly scoped effort to help late stager cancer patients make their own therapeutic peptide vaccines: http://alunglife.com/goal-cure-cancer-method/
There's a guy who has a chemistry YouTube channel and synthesized Pyrimethamine recently, check it out:
Next up - DIY Lasik surgery.
Sci-fi is increasingly struggling to keep up with reality.
Here's a novel with a similar premise (but more SF setting) that isn't even out yet: https://www.tor.com/2017/09/18/excerpts-annalee-newitz-auton...
Let's say that you need some pharmaceutical that's not available at a reasonable price. Perhaps because there's no generic available. Or because there are only licensed generics, priced just marginally less than the brand. And/or because you have crappy health insurance, or none at all.
Depending on the drug, the best option is either an equivalent from a compounding pharmacy, or one from a low-price country, such as India, Mexico, etc.
Making your own is only worth the hassle and risk if neither of those options is workable. The EpiPen is an unrepresentative example, because it's mostly about mechanics. With most drugs, you need to bulk out the active ingredient(s) to get a reasonably sized capsule or tablet. For capsules, with mannitol or whatever. For tablets, that plus binding agent(s).
The challenge is that thorough mixing is nontrivial.
I'm a bit skeptical about this. You should see what it takes to manufacture useful amounts of clinical-grade penicillin. It's fairly capital-intensive, and requires a special strain of the mold.
DIY pharmaceuticals will never be safe, unless the recipes are regulated, at which point there's no point to them anyway.
Imagine this situation: you Google for a recipe for a drug, and find two different recipes. Recipe A is the real one, while Recipe B will kill you instantly. The troll who posted Recipe B went around the internet claiming that Recipe B is real and Recipe A will kill you. There's no authoritative source to consult, because the actual recipe is patented. How do you know which is real?
Lots of medicines are straightforward to manufacture, and as long as you're careful and follow the same sorts of risk-mitigating procedures and quality assurance steps that you would expect from a manufacturer, you would be served no worse by your own generic brand.
That said, ideally we could fix the medicine-specific patent law craziness (and the regulatory inefficiency which necessitates it). Obviously, the specifics are much more complicated than anyone with a side to pick is willing to admit.
People struggle to cook food for themselves. Just saying.
This is an article written by the biggest fan of a guy with an inflated ego, a child-like view of the world, and nothing to show.
What if he instead made a more reliable setup and recipe? Then someone could make a lab and rent it out to people wanting to make their own stuff. It would still be DIY but it would be in a more controlled environment. This model does involve some risk to the lab, but hey have the renter agree to binding arbitration or something.
Flash Forward did an excellent (as usual) episode about this, just a week or so ago: https://www.flashforwardpod.com/2017/10/03/piraceuticals/
"He’s developing a desktop lab and a recipe book meant to equip patients to cook up a range of medicines, including a homemade version of the expensive hepatitis C drug Sovaldi, on their kitchen counters."
Any chemists here? Is it really plausible to synthesize C22H29FN3O9P at home?
If a person doesn't have access to medicine and dies:
- in the East, that's a victim of Communism. - in the West, that's a poor lazy bum.
In both cases, the person is gone and the society failed him.
So, this guy rebels. Let's not paint him in political colors.
Wow. Cool. I wonder how hard are the synthesises of the useful antidepressants like mirtazapine.
Also, I found ASX-05 (Phase III) uses a DM metabolite that is retained much more by the addition of brupropion. DM is the stuff in some cough syrups.
Related: If you want to understand how and why the American Healthcare system is broken, read the excellent book An American Sickness: How Healthcare Became Big Business and How You Can Take It Back by Elisabeth Rosenthal.
This brings to mind a very common ethics 101 class dilemma. Do you steal medicine to keep your loved one from dying? Of course, the answer to that is extremely obvious. I only wish we could help people steal more.
The premise in the article, that denying access to medicine is essentially murder is completely untrue. The following premise that people should be able steal is therefore not necessarily true.
The day anyone can get dna-programmable yeast and a reactor to grow it- big pharma is goone. What a nice woody sort of word.
I watched Michael present one of the most engaging and exciting talks at HOPE11 in NYC last year. On stage, he proceeded to make Deraprim (The pharma bro's jacked up price anti-toxiplasmosis drug) live on stage and then throw it in the audience. He then called Martin live and said he was his arch rival. Brilliant!
Michael you are a legend and hero for our new dystopian pharma world.
Can anyone give me any insights into how stuff like this (and Goop) gets any traction?
I like the idea. And I can't possibly see how this could go badly...
Something like this will be needed in the event of a civilizational reboot.
TL,DR Merkin heathcare sucks.
only in america...