An anarchist takes on Big Pharma by teaching patients to make their own meds • Hacker News Board

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#61

Post by Sangermaine » Fri, Oct 13, 2017, 6:15 PM UTC

dv_dt wrote: post #48

octaveguin wrote: post #40

Earlier quoted context omitted.

Enbrel? They just received another patent extension, too. This is what government granted monopolies look like.

This is what the breakdown of working competitive markets look like, and in this case it takes both government monopolies, as well as well as overwhelming short-term greed on the part of the private companies. Long term don't these companies think that charging outrageous prices for drugs will cause a future voter/government backlash of some sort... or maybe they think they should extract profits now because of a cha…

>Long term don't these companies think that charging outrageous prices for drugs will cause a future voter/government backlash of some sort

No, because it demonstrably won't. People say they're angry and then do nothing about it. The US has an entire political party angrily decrying any effort to regulate healthcare as socialist slavery.

The drug companies know they'll be just fine. Maybe some token slaps on the wrist and public performance of cosmetic changes to appease people now and then, but nothing will happen to them.

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#62

Post by moh_maya » Fri, Oct 13, 2017, 6:18 PM UTC

jfarlow wrote: post #54

moh_maya wrote: post #49

Earlier quoted context omitted.

Oh man. I agree with your sentiment, but this is a remarkable over simplification! The sequence may cost 700$ to synthesise. But it's delivery vector is a virus. Synthesizing the DNA, encapsulating the DNA in the virus.. not trivial stuff. While I agree that drug prices in the US are absurd beyond comprehension or justification, and I've had a ring side view of life sci research, drug development as well as the drug…

It is a bit of a simplification - but not by that many orders of magnitude ;). The really hard part (like small molecules) is the R&D to come up with that sequence. Unlike small molecules though, most people have the technological prowess to brew beer, make yoghurt, or buy an espresso. I've encapsidated plasmids into viruses for viral delivery in the lab and it took a day or two of work in a BSL2 hood to produce thou…

Again, I don't disagree with you. But shepherding a drug or treatment though the FDA is a mission in itself. It is expensive. The cost of goods may be relatively low once the process of production at scale is worked through, but it is hardly trivial.

Notwithstanding what I've said, I genuinely find it appalling that these drugs are priced at five figures. That's just criminal. In the range of thousands (or even 10s of thousands, if it's a single shot treatment), I'd think the pricing is justified. Maybe if it's a rare disorder, charge a little more.

But the travesty in the US system is that the govt., Via Medicare & Medicaid, is just not allowed to negotiate on costs. That's what the UK NICE does. The American system is insane!

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#63

Post by Sangermaine » Fri, Oct 13, 2017, 6:18 PM UTC

kentosi wrote: post #19

wccrawford wrote: post #11

>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 prev…

Agreed that the article is a little too flattering to his ego, but what about people desperate for medical aid, can't afford it, and would probably end up with pain/death without this as an alternative? What should they do?

Not listen to this guy. As the article notes none of his ideas or creations have ever been tried by anyone, including himself, and require fairly sophisticated ability to set up and make.

In fact from the article it's not clear at all what exactly this guy is offering or how it helps anyone beyond his self-aggrandizing bluster.

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#64

Post by HillaryBriss » Fri, Oct 13, 2017, 6:18 PM UTC

wccrawford wrote: post #11

>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 prev…

i empathize with Laufer's goals and purpose and concept, but, er, judging by this article's description of the man, he seems highly idealistic and overconfident.

i personally wouldn't be ready to place my trust in his drug recipes.

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#65

Post by steveeq1 » Fri, Oct 13, 2017, 6:20 PM UTC

wavefunction wrote: post #13

dannyw wrote: post #9

Earlier quoted context omitted.

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)

I don't know that the legal system necessarily cares about morality or moral responsibility. It seems like the only criteria that would matter would be legal responsibility, whatever that standard might be.

Or the criteria: "which moral stance makes me the most profit?"

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#66

Post by sigstoat » Fri, Oct 13, 2017, 6:21 PM UTC

JumpCrisscross wrote: post #7

leggomylibro wrote: post #2

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…

When drug companies issue patents, do they not also publicise production methods?

as vonmoltke suggests, even if you've got some chemical synthesis procedure laid out in a peer reviewed journal, you are, in the best case, expert man hours away from successfully duplicating it. and you'll only know you've successfully duplicated it if you can run the result through really expensive analytical equipment to confirm that 1) you made the stuff you wanted to make and 2) it doesn't have impurities that are problematic.

(as a minor defense of the pharma companies, you're paying them not just to do a bunch of organic synthesis for you, but also to do ongoing QA that the synthesis process is working correctly. and not all processes are equally easy/amenable to industrial-scale duplication.)

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#67

Post by moh_maya » Fri, Oct 13, 2017, 6:21 PM UTC

jfarlow wrote: post #54

moh_maya wrote: post #49

Earlier quoted context omitted.

Oh man. I agree with your sentiment, but this is a remarkable over simplification! The sequence may cost 700$ to synthesise. But it's delivery vector is a virus. Synthesizing the DNA, encapsulating the DNA in the virus.. not trivial stuff. While I agree that drug prices in the US are absurd beyond comprehension or justification, and I've had a ring side view of life sci research, drug development as well as the drug…

It is a bit of a simplification - but not by that many orders of magnitude ;). The really hard part (like small molecules) is the R&D to come up with that sequence. Unlike small molecules though, most people have the technological prowess to brew beer, make yoghurt, or buy an espresso. I've encapsidated plasmids into viruses for viral delivery in the lab and it took a day or two of work in a BSL2 hood to produce thou…

// offtopic

BTW, big fan of what you and serotiny are trying to do. I've just moved back to my home country.. am dabbling in other stuff at the moment, but the dream is to join with friends and start an automated high throughput industrial biotech company. PhD work used a lot of robotics and high throughput screening & mutagenesis and what have you.. and services like serotiny give me the comfort that my pie in the sky idea has a chance..

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#68

Post by QAPereo » Fri, Oct 13, 2017, 6:21 PM UTC

kentosi wrote: post #19

wccrawford wrote: post #11

>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 prev…

Agreed that the article is a little too flattering to his ego, but what about people desperate for medical aid, can't afford it, and would probably end up with pain/death without this as an alternative? What should they do?

Buy time at a lab to ensure QC at all levels of production, which they’d need to do this safely? I’m sure lots of desperate people have the time, money, and expertise ro make that work.

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#69

Post by zackmorris » Fri, Oct 13, 2017, 6:22 PM UTC

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.

Re: An anarchist takes on Big Pharma by teaching patients to make their own meds

#70

Post by rightos » Fri, Oct 13, 2017, 6:24 PM UTC

octaveguin wrote: post #40

WalterSear wrote: post #23

Earlier quoted context omitted.

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…

Enbrel? They just received another patent extension, too. This is what government granted monopolies look like.

It's a difficult balance to strike - you want the companies to keep developing drugs, you want onerous regulation on those drugs to make sure they're produced and tested for safety and efficacy. But then you want them to be cheap for patients and insurance companies.

The best solution is probably to simply drop patent extensions for these things and allow generic drug manufacturers to do what they do best, but if you do that too early you risk damaging funding for new drug development. Too late and you wind up with companies just building up piles of cash like we have today. You need to hit that point of "we need to develop new drugs to make a profit" - what that is, I'm not sure.