As someone who has looked at things like Renewable energy deployments within the UK, this is a pattern that seems to be quite pervasive across all industries. The byzantine web of planning approvals, goose counting, public outcry that you have to deal with to deploy essentially a relatively small solar farm is monstrous.
What that results with is that the only people capable of creating & managing these processes have the legal teams & resources necessary, stifling growth. Even once you get an approval, it may be years in order to get a grid connection.
This risk averse attitude pervades into all walks of life, including medical beurocracy. This essentially locks out a ton of real innovation, as it's too expensive to square up against a mass of beurocracy attempting to stifle you at all turns.
It depends on your point of view. For the person deciding on giving permission they will not be thanked for allowing it, but might well be blamed if something goes horribly wrong.
Yes, but this is a clasical agent-principal problem.
Theoretically, the bureaucracy works on your behalf, but only approximately so. If it makes a mistake that kills you, the decision maker does not pay any price.
To play the devils advocate, in places with low bureaucracy most of the risk taken is not innovation. It's just risk that leads to the death of others. Buildings with shitty concrete with too little rebar in it. Electrical wiring that will kill you. Improper foundations and such.
At the end of the day there is no simple answer here. It's no different than the talks about AI that dominate HN these days. You can build good things with AI, but the vast majority of it is crap, so we put up filters and hoops to ensure we don't get flooded with that crap.
Evidently the construct of the devil does because humanity can help but setup complex situations that require a balanced approach rather than only looking at things one way.
In that case, you can explain the nuance and offer a more balanced viewpoint, without invoking the devil as an accountability sink. Your words should stand on their own merits. (To be fair, you did this! I'm just saying you shouldn't preface your words with a trite phrase that signals you'll be lobbing cheap logic over the wall and disavowing responsibility for your words if the logic proves faulty.)
At least to me it sounds like you just have problems with the incorrect use of the devils advocate by some people in the first place, of which I would actually hope you understand its use in rhetoric.
At least in the common HN discussion you nearly have to use its form when talking in an approving manner of things like regulation or unions because it goes against the Holy Church of Capitalism, lest you be punished by the mighty downvote button for heresy.
Have you tried the "forgiveness is easier than permission" approach? What would happen if you just installed the solar panels? I know that in some countries they'd come by with a bulldozer and tear them down again - is your country one of those?
"Forgiveness is easier than permission" only makes sense when you know what you're doing and understand the consequences. (IE, paying taxes a little late in the US is okay because the fine is roughly the same as the interest of holding the money in the bank.)
In the case of solar panels, I'm going to assume the OP is talking about something like a grid-scale solar farm instead of rooftop solar production:
1: You need an agreement with "the grid" to get payment for the electricity you generate.
2: Feeding electricity into a power grid is a very dangerous thing, at a minimum the grid operator needs to make sure you aren't going to cause a fire or otherwise break their equipment.
---
That being said: If you're a homeowner trying to set up a small solar installation, you can pair the panels with batteries and skip feeding into the grid.
I am not sure about a bulldozer, but in the UK you will be forced to demolish it yourself. I am not sure what the penalty is for failing to do so when ordered to, but it seems to be usually effective.
> More and more promising treatments are accumulating in the pipeline, fueled by an explosion of new therapeutic modalities, ranging from mRNA to better peptides and more recently, by AI.
If the pipeline is backed up you put a bigger pipe in place, not get rid of it and hope some of the resulting flood goes where you want.
It’s less of a pipeline and more like a rocket engine. The exhaust gas (clinical data) spins the pump. We’ve put restrictors on that flow, and it’s taking a lot of fuel to get off the ground.
There’s a lot to be said about the seemingly overbearing nature of the majority of FDA/ISO standards that result in the mass amount of hurdles that need to be jumped before a treatment is available, but that’s mainly due to institutional trauma from past events (thalidomide, primarily) as well as the fact that treatments are not simply binary. The options are not just “does not work” and “makes patient better,” there’s also “makes the problem worse.” These additional tests and trials are to catch and prevent adverse effects just as much as they are to ensure the drug or treatment actually works.
During covid, the FDA testified to congress that they were putting the vaccines on an approval fast track that would not reduce safety or efficacy. Why is this not the standard approval track?
We're computer people, so we have a good analogy here; the COVID vaccine did speculative branch prediction. They basically operated _as if_ they would get approval at all stages where they could, parallelizing much more of the process at the cost of a _very_ expensive branch fail if something went wrong.
No, it's a cliche because it's false and/or just rephrased alarmism. Most regulations are changes made to solve no problem, simply because someone thought it was a good idea, or because they were vaguely related to a Current Thing, and then persisted because undoing any decision is organizationally extremely hard and nobody cared enough. 'Written in blood' is a great catchphrase for eliminating any discussion of cost-benefit tradeoffs, and the lives that could have been saved but for inaction by default.
The healthcare industry, especially in the US, isn't interested in finding cures for disease. It's interested in maximizing profits, which is a goal that the bureaucracy serves.
Regardless of their motives they're all subject to the same regulatory system so they can only stray so far for so long from the net effect of the incentives and remain not bankrupt and being auctioned to pay back creditors.
It seems to me that the leading vaccine manufacturers, who spend billions of dollars yearly in order to lobby US lawmakers that establish the bureaucracy the article is complaining about, are interested in just that (maximizing profits).
It doesn't really matter much if there are individuals or other organizations interested in curing disease, when we have a system that allows for legal bribery of lawmakers, and other individuals / organizations with more money that value profits over anything else.
A large portion of the US healthcare is through nonprofits who are more interested in continuing to exist than in maximizing profits.
Vaccine companies are very interested in preventing disease not the kind of extended treatment people so often expect the healthcare industry to be looking for. They have an endless stream of new people being born every year so have no interest in people getting sick.
If people aren't getting sick, they have no revenue stream. Those non-profits you mentioned obviously aren't as capable of lobbying congress to influence industry regulation / bureaucracy as for-profit organizations are.
Have you ever considered that "finding cures for disease" is really fucking hard to do?
Things that were easy to cure were already cured some time in the past century. What remains is the hard to crack nuts that resist simple scalable methods.
There's money to be had in curing HIV - but good luck pulling that off. Maybe someone will, this century.
Have you ever considered that once a disease is cured, the industry can no longer profit off of it being a disease? Treating disease rather than curing it, is a much more profitable venture.
How is there money to be had in curing HIV? It seems to me like it's much more profitable to continue selling expensive HIV treatments rather than curing the disease. Once a patient is cured, they no longer need to pay for expensive treatments.
And? Why would that be my problem? I'm in the business of selling HIV cures, not HIV treatments.
If I get to undercut your entire "HIV treatment" business AND line my pockets with your entire market share, then, good for me, bad for you. Sucks to suck. Should have cured HIV first if you didn't want me to do it.
There are many, many, many examples of "newer and better treatment X kills the market share of older and worse treatment Y" in the history of healthcare. Your conspiracy theory model predicts this never happening.
I mean, yes, I and many others have thought of that.
To counter, have you realized HIV is an evolutionary entity that is optimized to continue existing by not fucking dying. HIV mutates like crazy. I mean there are other things like the flu that mutate, but because we have partial immunity to the flu we can use that immunity to create new vaccines every year against it.
It doesn't take much self research to see that HIV is a rather insane virus, and if somehow out of the gate it would have been wildly contagious that it could have wiped humanity.
So you think that complicated diseases are easily curable and the entire scientific world, including very different countries like China, has just decided to hide the knowledge?
If your cynical take was correct, there would be no cures ever. And yet there are new ones all the time. For example, vaccines. There are way, way more vaccines developed in the 21st century than in the 250 years before that.
Vaccines against HPV have reduced incidence of cervical cancers to basically 0 in the cohorts that obtained them. How come? Shouldn't Big Cancer be interested in treating cervical cancers expensively and promoting relapses?
Even in cancers, your chances of surviving, say, Hodgkin's lymphoma, are now north of 90 per cent. The treatment is expensive, but time limited. You don't have to take pills for your entire life.
How does that square with your view of the medical system as a machine for prolonging diseases indefinitely?
Plus even if we posit nefarious forces, we should also account for nefarious forces which want the sickness gone.
If you're seriously sick you aren't making money because you can't work or all your money goes to Evil Pharma Co, then the Evil Government doesn't like that, because they can't wring taxes out of you. (Which they prefer since it's easier than fighting Evil Pharma Co.)
Meanwhile, The Shadow Government wants you to be healthy enough to work every day, or else they won't finish the navigation beacons for the alien invasion.
Healthy people are more productive, which mean they are better paid, which mean they have more money for healthcare, which means profits for the healthcare industry.
Finding cures is a good way of maximizing profits, the best way actually, and if the healthcare industry is not doing that, it means that something else is stopping them. It can be bureaucracy, it can be just because it is really hard, it can be some systemic problem linked to health insurance and government funding, but I don't see how the healthcare industry wouldn't want to cure people.
It is an industry where demand is guaranteed, diseases in general are not disappearing anytime soon, let alone aging.
yes and no. Finding treatments that require long term commitments is more profitable than finding cures. Look at the history of ulcer drugs. Pharmaceutical companies spent huge amounts to develop drugs that ameliorated symptoms, a two person team found a cure for most ulcers.
'Bureaucracy' is commonly used as a trigger word. When I see it, I'm alerted to manipulation and, in some contexts, a certain partisan dogma. After all, who likes bureaucracy? By the same token, who like stop lights or authentication or other structures in life? But every large organization functions using bureaucracy - every highly successful one, every median one, every poor one.
> A system originally conceived to safeguard patients has gradually produced a strange and troubling outcome: the mere chance of survival is effectively reserved for the very few who possess the means to assemble an army of experts capable of navigating its labyrinthine procedures.
The survival of who? The three people who are trying to experiment on themselves (with questionable results, especially when their experiment has N=1)? That's a crisis? What about the 99.9..% of sick people?
> I will focus on the former: small, exploratory trials, which will be called early-stage small n trials for the purpose of this essay.
'early-stage' - it's just like a startup! Except the human experimentation part.
> In recent years, China has been advancing rapidly in biotechnology, in part because it is easier to run early-stage clinical studies there.
> “The US can’t afford to lose the biotech race with China.”
With the 'bureaucracy', it's right out of central casting, including the scare tactic: The same arguments have been used for labor standards, property rights, democracy itself.
That article is exactly on point. There is a process in place for the express reason of slowing and blocking anything that will bring about positive, meaningful solutions and potential cures to the human condition.
Because the old state of affairs had desperate people being experimented on by opportunists, charlatans and fraudsters for money. There's work to be done balancing the equities of people with terminal diagnoses but lets not pretend there's no point to the roadblocks to human experimentation on the dying.
A rich person engineering their own RNA modifications for their dog? Yeah, I don't want that and bureaucracy is how we voice that.
As someone who has looked at things like Renewable energy deployments within the UK, this is a pattern that seems to be quite pervasive across all industries. The byzantine web of planning approvals, goose counting, public outcry that you have to deal with to deploy essentially a relatively small solar farm is monstrous.
What that results with is that the only people capable of creating & managing these processes have the legal teams & resources necessary, stifling growth. Even once you get an approval, it may be years in order to get a grid connection.
This risk averse attitude pervades into all walks of life, including medical beurocracy. This essentially locks out a ton of real innovation, as it's too expensive to square up against a mass of beurocracy attempting to stifle you at all turns.
That's what a lot of people seemingly struggle to understand.
Inaction is not a safe action. Inaction has a price. And sometimes a death toll too.
It depends on your point of view. For the person deciding on giving permission they will not be thanked for allowing it, but might well be blamed if something goes horribly wrong.
Yes, but this is a clasical agent-principal problem.
Theoretically, the bureaucracy works on your behalf, but only approximately so. If it makes a mistake that kills you, the decision maker does not pay any price.
To play the devils advocate, in places with low bureaucracy most of the risk taken is not innovation. It's just risk that leads to the death of others. Buildings with shitty concrete with too little rebar in it. Electrical wiring that will kill you. Improper foundations and such.
At the end of the day there is no simple answer here. It's no different than the talks about AI that dominate HN these days. You can build good things with AI, but the vast majority of it is crap, so we put up filters and hoops to ensure we don't get flooded with that crap.
The devil doesn't need any more advocates.
Evidently the construct of the devil does because humanity can help but setup complex situations that require a balanced approach rather than only looking at things one way.
In that case, you can explain the nuance and offer a more balanced viewpoint, without invoking the devil as an accountability sink. Your words should stand on their own merits. (To be fair, you did this! I'm just saying you shouldn't preface your words with a trite phrase that signals you'll be lobbing cheap logic over the wall and disavowing responsibility for your words if the logic proves faulty.)
At least to me it sounds like you just have problems with the incorrect use of the devils advocate by some people in the first place, of which I would actually hope you understand its use in rhetoric.
At least in the common HN discussion you nearly have to use its form when talking in an approving manner of things like regulation or unions because it goes against the Holy Church of Capitalism, lest you be punished by the mighty downvote button for heresy.
Have you tried the "forgiveness is easier than permission" approach? What would happen if you just installed the solar panels? I know that in some countries they'd come by with a bulldozer and tear them down again - is your country one of those?
"Forgiveness is easier than permission" only makes sense when you know what you're doing and understand the consequences. (IE, paying taxes a little late in the US is okay because the fine is roughly the same as the interest of holding the money in the bank.)
In the case of solar panels, I'm going to assume the OP is talking about something like a grid-scale solar farm instead of rooftop solar production:
1: You need an agreement with "the grid" to get payment for the electricity you generate.
2: Feeding electricity into a power grid is a very dangerous thing, at a minimum the grid operator needs to make sure you aren't going to cause a fire or otherwise break their equipment.
---
That being said: If you're a homeowner trying to set up a small solar installation, you can pair the panels with batteries and skip feeding into the grid.
I am not sure about a bulldozer, but in the UK you will be forced to demolish it yourself. I am not sure what the penalty is for failing to do so when ordered to, but it seems to be usually effective.
> More and more promising treatments are accumulating in the pipeline, fueled by an explosion of new therapeutic modalities, ranging from mRNA to better peptides and more recently, by AI.
If the pipeline is backed up you put a bigger pipe in place, not get rid of it and hope some of the resulting flood goes where you want.
It’s less of a pipeline and more like a rocket engine. The exhaust gas (clinical data) spins the pump. We’ve put restrictors on that flow, and it’s taking a lot of fuel to get off the ground.
Rockets with unrestricted flow are called bombs.
There’s a lot to be said about the seemingly overbearing nature of the majority of FDA/ISO standards that result in the mass amount of hurdles that need to be jumped before a treatment is available, but that’s mainly due to institutional trauma from past events (thalidomide, primarily) as well as the fact that treatments are not simply binary. The options are not just “does not work” and “makes patient better,” there’s also “makes the problem worse.” These additional tests and trials are to catch and prevent adverse effects just as much as they are to ensure the drug or treatment actually works.
During covid, the FDA testified to congress that they were putting the vaccines on an approval fast track that would not reduce safety or efficacy. Why is this not the standard approval track?
For example, running very large trials in a short time is very high effort.
Because it's inordinately more expensive.
We're computer people, so we have a good analogy here; the COVID vaccine did speculative branch prediction. They basically operated _as if_ they would get approval at all stages where they could, parallelizing much more of the process at the cost of a _very_ expensive branch fail if something went wrong.
I'm glad this is getting more attention!
I posted the original reporting from The Australian yesterday - it's a good primer.
https://news.ycombinator.com/item?id=47379740 https://archive.is/pvRaG
The usual line is "the regulations are written in blood", and it's a cliche because it's true.
No, it's a cliche because it's false and/or just rephrased alarmism. Most regulations are changes made to solve no problem, simply because someone thought it was a good idea, or because they were vaguely related to a Current Thing, and then persisted because undoing any decision is organizationally extremely hard and nobody cared enough. 'Written in blood' is a great catchphrase for eliminating any discussion of cost-benefit tradeoffs, and the lives that could have been saved but for inaction by default.
The cure for cancer will come via a revamp of regulations. /s
The healthcare industry, especially in the US, isn't interested in finding cures for disease. It's interested in maximizing profits, which is a goal that the bureaucracy serves.
The healthcare industry in the US in made up a huge range of individual and organizations, they don’t all have the same motives.
Suggesting otherwise is projecting your own fears not representative of reality.
>they don’t all have the same motives
Regardless of their motives they're all subject to the same regulatory system so they can only stray so far for so long from the net effect of the incentives and remain not bankrupt and being auctioned to pay back creditors.
>they're all subject to the same regulatory system
I mean different countries have different regulatory systems....
Then feel free to point out the outliers that aren't interested in maximizing profits.
https://www.somo.nl/big-pharma-raked-in-usd-90-billion-in-pr...
It seems to me that the leading vaccine manufacturers, who spend billions of dollars yearly in order to lobby US lawmakers that establish the bureaucracy the article is complaining about, are interested in just that (maximizing profits).
It doesn't really matter much if there are individuals or other organizations interested in curing disease, when we have a system that allows for legal bribery of lawmakers, and other individuals / organizations with more money that value profits over anything else.
A large portion of the US healthcare is through nonprofits who are more interested in continuing to exist than in maximizing profits.
Vaccine companies are very interested in preventing disease not the kind of extended treatment people so often expect the healthcare industry to be looking for. They have an endless stream of new people being born every year so have no interest in people getting sick.
If people aren't getting sick, they have no revenue stream. Those non-profits you mentioned obviously aren't as capable of lobbying congress to influence industry regulation / bureaucracy as for-profit organizations are.
Doesn't matter. Not all have the same level of influence. The ones with the most clearly follow GP's characterization.
Have you ever considered that "finding cures for disease" is really fucking hard to do?
Things that were easy to cure were already cured some time in the past century. What remains is the hard to crack nuts that resist simple scalable methods.
There's money to be had in curing HIV - but good luck pulling that off. Maybe someone will, this century.
Have you ever considered that once a disease is cured, the industry can no longer profit off of it being a disease? Treating disease rather than curing it, is a much more profitable venture.
How is there money to be had in curing HIV? It seems to me like it's much more profitable to continue selling expensive HIV treatments rather than curing the disease. Once a patient is cured, they no longer need to pay for expensive treatments.
And? Why would that be my problem? I'm in the business of selling HIV cures, not HIV treatments.
If I get to undercut your entire "HIV treatment" business AND line my pockets with your entire market share, then, good for me, bad for you. Sucks to suck. Should have cured HIV first if you didn't want me to do it.
There are many, many, many examples of "newer and better treatment X kills the market share of older and worse treatment Y" in the history of healthcare. Your conspiracy theory model predicts this never happening.
I mean, yes, I and many others have thought of that.
To counter, have you realized HIV is an evolutionary entity that is optimized to continue existing by not fucking dying. HIV mutates like crazy. I mean there are other things like the flu that mutate, but because we have partial immunity to the flu we can use that immunity to create new vaccines every year against it.
It doesn't take much self research to see that HIV is a rather insane virus, and if somehow out of the gate it would have been wildly contagious that it could have wiped humanity.
So you think that complicated diseases are easily curable and the entire scientific world, including very different countries like China, has just decided to hide the knowledge?
If your cynical take was correct, there would be no cures ever. And yet there are new ones all the time. For example, vaccines. There are way, way more vaccines developed in the 21st century than in the 250 years before that.
Vaccines against HPV have reduced incidence of cervical cancers to basically 0 in the cohorts that obtained them. How come? Shouldn't Big Cancer be interested in treating cervical cancers expensively and promoting relapses?
Even in cancers, your chances of surviving, say, Hodgkin's lymphoma, are now north of 90 per cent. The treatment is expensive, but time limited. You don't have to take pills for your entire life.
How does that square with your view of the medical system as a machine for prolonging diseases indefinitely?
Plus even if we posit nefarious forces, we should also account for nefarious forces which want the sickness gone.
If you're seriously sick you aren't making money because you can't work or all your money goes to Evil Pharma Co, then the Evil Government doesn't like that, because they can't wring taxes out of you. (Which they prefer since it's easier than fighting Evil Pharma Co.)
Meanwhile, The Shadow Government wants you to be healthy enough to work every day, or else they won't finish the navigation beacons for the alien invasion.
Healthy people are more productive, which mean they are better paid, which mean they have more money for healthcare, which means profits for the healthcare industry.
Finding cures is a good way of maximizing profits, the best way actually, and if the healthcare industry is not doing that, it means that something else is stopping them. It can be bureaucracy, it can be just because it is really hard, it can be some systemic problem linked to health insurance and government funding, but I don't see how the healthcare industry wouldn't want to cure people.
It is an industry where demand is guaranteed, diseases in general are not disappearing anytime soon, let alone aging.
yes and no. Finding treatments that require long term commitments is more profitable than finding cures. Look at the history of ulcer drugs. Pharmaceutical companies spent huge amounts to develop drugs that ameliorated symptoms, a two person team found a cure for most ulcers.
.
"lax lab controls are a feature, not a bug" -Wuhan Institute of Virology
'Bureaucracy' is commonly used as a trigger word. When I see it, I'm alerted to manipulation and, in some contexts, a certain partisan dogma. After all, who likes bureaucracy? By the same token, who like stop lights or authentication or other structures in life? But every large organization functions using bureaucracy - every highly successful one, every median one, every poor one.
> A system originally conceived to safeguard patients has gradually produced a strange and troubling outcome: the mere chance of survival is effectively reserved for the very few who possess the means to assemble an army of experts capable of navigating its labyrinthine procedures.
The survival of who? The three people who are trying to experiment on themselves (with questionable results, especially when their experiment has N=1)? That's a crisis? What about the 99.9..% of sick people?
> I will focus on the former: small, exploratory trials, which will be called early-stage small n trials for the purpose of this essay.
'early-stage' - it's just like a startup! Except the human experimentation part.
> In recent years, China has been advancing rapidly in biotechnology, in part because it is easier to run early-stage clinical studies there.
> “The US can’t afford to lose the biotech race with China.”
With the 'bureaucracy', it's right out of central casting, including the scare tactic: The same arguments have been used for labor standards, property rights, democracy itself.
That article is exactly on point. There is a process in place for the express reason of slowing and blocking anything that will bring about positive, meaningful solutions and potential cures to the human condition.
Because the old state of affairs had desperate people being experimented on by opportunists, charlatans and fraudsters for money. There's work to be done balancing the equities of people with terminal diagnoses but lets not pretend there's no point to the roadblocks to human experimentation on the dying.