Anarchists making their own medicine (2018) • Hacker News Board

Re: Anarchists making their own medicine (2018)

#31

Post by mayapugai » Wed, Jan 05, 2022, 9:56 PM UTC

notch656a wrote: post #18

dekhn wrote: post #12

I know a bunch about pharma. The folks who are doing this and saying it's cheaper are often completely neglecting costs that are borne by corporations: the initial R&D, but also the immense amount of quality control and regulatory compliance. I've also talked to the biohackers. S ome of them are smart, careful, and just get stuff done in the lab. Then there are the attention hogs who inject themselves on youtube (typ…

Those costs aren't all borne by corporations, just the profits. The cost is the cost of public schooling of the children that invent these things, the invention and development of internet partially funded by DARPA that allows quickly conveying scientific information these companies use, the millinia of scientific research that precedes the invention. The corporation then benefits from regulatory capture, and insanel…

Even in academia, where most research originates and matures before being sold to corporations, the vast majority of research is tax-payer funded. I wholeheartedly agree with you stance. It's unsurprising that these regulatory barriers keep all but the wealthiest corporations out of the market considering that big pharma and insurance account for significant share the donor-base of most politicians in the United States.

Tax base funds the work, donor base collects the rewards.

Re: Anarchists making their own medicine (2018)

#32

Post by kragen » Wed, Jan 05, 2022, 9:56 PM UTC

dekhn wrote: post #12

I know a bunch about pharma. The folks who are doing this and saying it's cheaper are often completely neglecting costs that are borne by corporations: the initial R&D, but also the immense amount of quality control and regulatory compliance. I've also talked to the biohackers. S ome of them are smart, careful, and just get stuff done in the lab. Then there are the attention hogs who inject themselves on youtube (typ…

R&D and quality control provides benefits to patients, and it is critically important to figure out how to reduce the cost of R&D and quality control so we can do a lot more of them. That's what Four Thieves Vinegar and other biohackers are doing.

Regulatory compliance doesn't provide benefits to patients; it's a deadweight loss. As you are presumably aware, to a significant extent, the reason that regulatory compliance is so costly is that, being costly protects established drug companies from competition.

Quality control and initial R&D have nothing to do with why Epi Pens, insulin, or Daraprim are absurdly overpriced in the US. That's purely monopoly rent extraction.

Re: Anarchists making their own medicine (2018)

#33

Post by aijeq » Wed, Jan 05, 2022, 9:57 PM UTC

nynx wrote: post #14

I hope we can eventually have self-contained machines that can synthesize many different types of medications. By certifying the machines or testing them thoroughly, you can lessen the worry that people will synthesize the drugs wrong. I think this is almost possible for a large range of simple, small-molecule drugs.

The point of this exercise is that the regulatory capture effectively prevents life saving treatments from reaching the people who need them.

For example, better quality insulin is far more expensive because there's tremendous capture not only in the insulin market but the bioreactors required to make the insulin from bacteria. The process isn't insanely complicated, chemistry-wise, but the fact that only a few can make it and its MUCH better means they can charge more.

Another example is one-off drugs for rare but potentially curable conditions. They are often so expensive that they're pulled from the market because 1% of 1% of the population needs them and you can't use that to drive revenue.

3D printing took off precisely because of the LACK of regulatory capture. Imagine you had an FDA synthesizer that could make something common and simple like blood pressure medication for fractional cents on the dollar. You wouldn't be able to find the plans for this like you could for a 3D printed gun, for example, because the technology requires actual expertise to use. So you'd likely be left buying it from some biotech firm who will happily charge a price equivalent to a lifetime supply of all the drugs it can produce. You once again reach the affordability problem. Not because the technology is that far out of reach or so esoteric, but to be able to even get the device into the people's homes who need it you would need to find centuries of deeply entrenched and well capitalized special interests. Pharma would rather you die from something preventable than leave a single penny uncollected. Normally this would be considered hyperbole but in this case it's absolutely, verifiably true.

You can be certain if any DIY "3d molecule printer" ever took off there would be heavily armed alphabet soup boys at the DEA ready to kill whoever to keep the interests of big pharma in power.

Re: Anarchists making their own medicine (2018)

#34

Post by nwiswell » Wed, Jan 05, 2022, 9:57 PM UTC

kragen wrote: post #27

mrxd wrote: post #25

> “If you're going to die and you're being denied the medicine that can save you, would you rather break the law and live, or be a good upstanding citizen and a corpse?” It's obviously better to risk using DIY medicine than to die, and it sounds appealing—mutual aid, neighbors helping neighbors, saving lives with free medicine! But framing it this way significantly misrepresents the issue of for-profit medicine. Peop…

What if the DIY medicines weren't of dubious quality? What if they were higher quality than the ones that cost US$750 a dose? What if everyone had an analysis machine that could analyze the medicines, DIY or not, to find out what was in them, and the DIY stuff turned out to be purer and more precisely dosed? That's what happened with Linux versus, say, Solaris and Microsoft Windows, and it's what's happening now with…

> What if everyone had an analysis machine that could analyze the medicines, DIY or not, to find out what was in them

I can fairly confidently predict this will not happen like it did for software. Chemical analysis has been around a long time and remains difficult for experts to do accurately without context, let alone for a layman. Gas chromatography, for example, requires large and expensive machinery and some idea of what the substance is composed of in order to determine the concentration of analytes.

Reagent testing is cheap, simple, and straightforward, but it is generally only capable of detecting whether or not some class of substances are present above a particular concentration. You cannot use reagent testing to determine "how pure" a medicine is, let alone whether the impurities (which there will assuredly be) are potentially harmful.

As is currently the case for illicit drugs, I imagine there will be an ecosystem to verify that A) the active ingredient is actually present and B) some limited range of problem impurities are not present, but that is a much less stringent form of quality control than pharmaceutical companies perform.

Re: Anarchists making their own medicine (2018)

#35

Post by trhway » Wed, Jan 05, 2022, 10:01 PM UTC

snakeboy wrote: post #30

trhway wrote: post #21

Earlier quoted context omitted.

while all that drama on the surface, the industry had coopted government's War on Drugs and pushed opiates (great thing when used as needed) into the opioid epidemics, and now they coopted government's War on Covid and has been pushing billions of doses of the vaccines (great thing when it works) which clearly fail to control the spread (and thus these vaccines have only limited use, i.e. only for the people who real…

Seems like they're pretty different cases, given how life-destroying opioid addiction is. Pushing vaccines is mostly just profiting by adding another layer of bureaucracy and annoyance into daily life. I'm not really more angry at pfizer than I am Booz Allen for wasting however many billions of my tax dollars.

>Seems like they're pretty different cases, given how life-destroying opioid addiction is.

Pfizer/Booz Allen waste of billions of tax dollars do come with resulting indirect damage to people health and lives who could have been helped otherwise. And for direct damage - I think jury is still out on that one. For example, in UK according to the link they already count 0.3M of heart issues which they officially pinned on pandemic stress

https://www.standard.co.uk/news/health/post-pandemic-stress-...

with more expected to come:

"Mark Rayner, a former senior NHS psychological therapist and founder of EASE Wellbeing CIC, said that as many as three million people in Britain are already suffering from PPSD, thanks to stress and anxiety caused by the effects of Covid-19.

He fears this could result in a dramatic rise in physical health issues, such as coronary heart failure, if cases are not detected or treated early."

Pinning on pandemic stress means they couldn't pin it on covid - either it is non-infected people or timing isn't correlated enough. Now, simple politically correct choice - stress or mRNA vaccines known for causing heart issues?

Re: Anarchists making their own medicine (2018)

#36

Post by notch656a » Wed, Jan 05, 2022, 10:04 PM UTC

nwiswell wrote: post #34

kragen wrote: post #27

Earlier quoted context omitted.

What if the DIY medicines weren't of dubious quality? What if they were higher quality than the ones that cost US$750 a dose? What if everyone had an analysis machine that could analyze the medicines, DIY or not, to find out what was in them, and the DIY stuff turned out to be purer and more precisely dosed? That's what happened with Linux versus, say, Solaris and Microsoft Windows, and it's what's happening now with…

> What if everyone had an analysis machine that could analyze the medicines, DIY or not, to find out what was in them I can fairly confidently predict this will not happen like it did for software. Chemical analysis has been around a long time and remains difficult for experts to do accurately without context, let alone for a layman. Gas chromatography, for example, requires large and expensive machinery and some ide…

I'm not arguing with what you're saying, but GC/MS can be bought for like $100 a sample and it's conceivable a system can be invented where private auditors audit the output of an unregulated pharmaceutical manufacturer in such a way that the QC assurances to the consumer are as good or better as in our current system, with much lower regulatory costs.

Re: Anarchists making their own medicine (2018)

#37

Post by dekhn » Wed, Jan 05, 2022, 10:07 PM UTC

kragen wrote: post #32

dekhn wrote: post #12

I know a bunch about pharma. The folks who are doing this and saying it's cheaper are often completely neglecting costs that are borne by corporations: the initial R&D, but also the immense amount of quality control and regulatory compliance. I've also talked to the biohackers. S ome of them are smart, careful, and just get stuff done in the lab. Then there are the attention hogs who inject themselves on youtube (typ…

R&D and quality control provides benefits to patients, and it is critically important to figure out how to reduce the cost of R&D and quality control so we can do a lot more of them. That's what Four Thieves Vinegar and other biohackers are doing. Regulatory compliance doesn't provide benefits to patients; it's a deadweight loss. As you are presumably aware, to a significant extent, the reason that regulatory complia…

Nothing I said above disagrees with the fact that many pharma are indeed doing what you call "monopoly rent extraction". I think all of those drugs are overpriced for non-economic reasons.

Regulatory compliance, for example, with the FDA approval process, isn't a deadweight loss; it's a process that reduces the risk a dangerous drug will be given to the public. It's mostly costly due to incompetence and bureaucracy, not because pharma is evilly plotting to continue to be the only people who can get stuff through the FDA.

If somebody comes up with magical ways to reduce the costs of R&D and QC in pharma, I'm all for it. Just be aware: I've worked around pharma for decades and it will only get more expensive to do any of this. Nobody is going to come in and magically disrupt the business with a new technology pharma didn't think of yet.

Re: Anarchists making their own medicine (2018)

#38

Post by LiquidSky » Wed, Jan 05, 2022, 10:09 PM UTC

kragen wrote: post #27

mrxd wrote: post #25

> “If you're going to die and you're being denied the medicine that can save you, would you rather break the law and live, or be a good upstanding citizen and a corpse?” It's obviously better to risk using DIY medicine than to die, and it sounds appealing—mutual aid, neighbors helping neighbors, saving lives with free medicine! But framing it this way significantly misrepresents the issue of for-profit medicine. Peop…

What if the DIY medicines weren't of dubious quality? What if they were higher quality than the ones that cost US$750 a dose? What if everyone had an analysis machine that could analyze the medicines, DIY or not, to find out what was in them, and the DIY stuff turned out to be purer and more precisely dosed? That's what happened with Linux versus, say, Solaris and Microsoft Windows, and it's what's happening now with…

>What if everyone had an analysis machine that could analyze the medicines

Because, as a post below notes, this is a pure fantasy. At this point you're proposing actual magic.

>Linux versus, say, Solaris and Microsoft Windows

Your choice of operating system isn't going to severely harm or kill you. "Move fast and break things" is a problem when the "things" are people.

>medical consequences have to get pretty costly before they're more costly than selling your home and emptying your retirement account and your kids' college funds.

Welcome to the reality of healthcare in the US for the uninsured (and often times for the poorly-insured).

Re: Anarchists making their own medicine (2018)

#39

Post by dekhn » Wed, Jan 05, 2022, 10:11 PM UTC

mayapugai wrote: post #31

notch656a wrote: post #18

Earlier quoted context omitted.

Those costs aren't all borne by corporations, just the profits. The cost is the cost of public schooling of the children that invent these things, the invention and development of internet partially funded by DARPA that allows quickly conveying scientific information these companies use, the millinia of scientific research that precedes the invention. The corporation then benefits from regulatory capture, and insanel…

Even in academia, where most research originates and matures before being sold to corporations, the vast majority of research is tax-payer funded. I wholeheartedly agree with you stance. It's unsurprising that these regulatory barriers keep all but the wealthiest corporations out of the market considering that big pharma and insurance account for significant share the donor-base of most politicians in the United Stat…

Most of the R&D done to make drugs isn't done at universities. They do some initial discovery work and invent entire new categories of drugs, but their overall role in the process of taking a druggable target to market is limited.

Academia gets to keep rewards; universities patent discoveries and license the technology to industry. This made $$$ for Stanford and UC (billions of dollars).

I am sympathetic to the idea that regular joe of US doesn't get enough benefit for their tax payments but actually I think if you look at all the benefits americans get indirectly from living here, it's hard to say for certain that individuals aren't recompensed properly. And, I suppose, if they wanted, many people can buy stock in pharma and enjoy the profits themselves.

Re: Anarchists making their own medicine (2018)

#40

Post by nwiswell » Wed, Jan 05, 2022, 10:11 PM UTC

notch656a wrote: post #36

nwiswell wrote: post #34

Earlier quoted context omitted.

> What if everyone had an analysis machine that could analyze the medicines, DIY or not, to find out what was in them I can fairly confidently predict this will not happen like it did for software. Chemical analysis has been around a long time and remains difficult for experts to do accurately without context, let alone for a layman. Gas chromatography, for example, requires large and expensive machinery and some ide…

I'm not arguing with what you're saying, but GC/MS can be bought for like $100 a sample and it's conceivable a system can be invented where private auditors audit the output of an unregulated pharmaceutical manufacturer in such a way that the QC assurances to the consumer are as good or better as in our current system, with much lower regulatory costs.

In the limit what you are describing is a generic drugmaker.

It's certainly possible to audit drug quality by sending it to labs, and people do that for darknet drugs all the time, but there are still problems:

1) There is no way to use ex-post analysis alone to achieve the kind of QA that pharmaceutical companies do; they have visibility into the entire manufacturing process and process control. Put another way, a sample of a drug cannot be used to verify that the process used to manufacture it is safe.

2) There is no assurance that anything you get in the future is made with the same process.

The only way I see this working, honestly, is for a rogue jurisdiction to offer safe harbor to "generic pirates". The rogue jurisdiction would offer legitimate regulatory oversight in exchange for tax revenue, and the drugs would be smuggled out of the jurisdiction for sale. To some extent this is already the case in grey markets where brand name drugs which are sold for less in other countries get arbitraged/smuggled back to high-cost markets.