The bureaucracy blocking the chance at a cure | Hacker News Reader

The bureaucracy blocking the chance at a cure

writingruxandrabio.com

156 pointsitem175 comments

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.

That's kind of the issue with a lot of bureaucratic oversight. It often produces systems that aren't at all interested in being streamlined, in letting things that should happen happen. It produces systems where compliance is a drag on the one doing things, and the default state is "forbidden".

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.

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?

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.

Likely the same as in most other countries: fines, further orders and eventually criminal prosecution.

when you go before a jury of your peers for having illegal solar panels on your roof, what will they say?

A solar farm isn't a few panels on your roof, it's a large installation in a field.

Also in the UK it would probably be a civil lawsuit, which doesn't have a jury, although if you violate a civil court order you can still get a jail sentence.

"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.

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.

That isn't what devil's advocate means. Merely that you don't personally endorse the position you're presenting but are doing so nonetheless for whatever reason.

Its a double edged sword. yes, it stifles renewable energy innovation, but those rules are usually put in place in a more general sense, and you would really want them in place if next door was suddenly announced to be a landfill, or chemical plant, or a chicken farm, or an xAI datacenter....

The UK is begging for people to build datacenters: https://www.theguardian.com/technology/2026/mar/09/revealed-...

National governments maybe. Local ones aren’t, and it’s those that fill with nimbys and maintain the majority of control over planning

Everyone wants the datacenter somewhere in their country for sovereignty... just not next to them. Quelle surprise. At this point you may as well build supermarkets on top of them just to sell 'em to people.

They're so absurdly capital intensive at this point that they probably ought to be buried at least 50 meters down. If any reasonably capable countries ever face off directly they'll probably be one of the first things to go.

US suburban development followed nuclear war threats. Will history repeat itself by unconcentrating servers?

Given the rapidly increasing power densities I expect it would be far more straightforward to bury them. I believe a single 42u rack of last gen nvidia hardware is already more energy intensive than the HVAC for a mcmansion.

However it occurs to me that the electrical grid becomes a high priority military target in this scenario. Maybe datacenters should go all in on building their own power plants.

I think you've stumbled on the core problem - it's a lot easier if you have the funding to be able to do all of those things.

xAI would have the capital and lawyers necessary to push it through no matter what. You can hire "independent" environmental consultants to allow for these projects to be made with enough capital.

The problem with the UK is that these rules absolutley do not apply to be big players, it's a case of stifling smaller innovators while letting larger ones get off scot free.

I've personally seen the opposite where a government regulator hired an independent environmental consultant to document the decline of wildlife in a specific area. The problem was their findings were that the wildlife were actually doing exceptionally well in that area. The government promptly ignored the results and then stopped providing any further studies on the wildlife population under the logic they were never required to.

Maybe one solution for this issue would be some kind of “developer’s ombudsman” that is an affordable public service to 1) help people navigate the bureaucracy and 2) produce a report recommending streamlining of rules where possible.

This avoids “cutting down all the laws to punish the devil”. Some regulations are necessary.

Another bureaucracy to help people navigate the existing bureaucracy? Are you missing a "/s"?

No. The companies that hire lawyers to navigate government bureaucracy have their own internal bureaucracies. So the status quo is not “no bureaucracy”.

It seems that in any sufficiently complex thing there will be some irreducible amount of bureaucracy. So it’s reasonable to make that irreducible set of rules more accessible.

That's the great part of getting rid of government bureaucracy. You save a bit on that and a fortune on all the internal company bureaucracies that can be removed in response.

> Some regulations are necessary.

Genuine question — is there a common factor across the regulations you'd keep? Because if there is, you could encode that directly instead of maintaining the specific rules. And if there isn't, "some regulations are necessary" isn't really a position yet.

“Tear it down and see what breaks” is one strategy. I would suggest another based on the principle of Chesterton’s fence:

https://fs.blog/chestertons-fence/

The point of the ombudsman I suggested is that it’s hard to encode a simple rule in a sentence or two. You need to be familiar with the process so you’re not relearning the same lessons over and over.

I'd say the underlying problem is our capital-first regulatory environments. For the topic of the original article, anyone can see that it would be reasonable for a guy who loves his dog to make what appears to be a prudent medical decision in her interest, trying out an unknown vaccine without any sort of government involvement - and a government that prevents this is unjust. But with the way the system is set up, if this were legally sound it would then automatically imply that a corpo scaling up the situation to thousands of dogs that it (the corpo) doesn't care about would also be okay. The fundamental problem is that there is no recognition of scale (because small scale operators don't have the pull with the government to fix the regulations).

The same government that writes these regulations also has a department that rounds up and kills stray dogs so this regulation is stupid at any scale.

In general outright killing is considered a completely different thing than medical experiments.

The same government also allows and profiteers from people murdering animals in the thousands every day, to be dismembered and sold

UK planning law is not the same as medical research regulations.

UK planning law is the physical manifestation of legal tech debt. It will not be tackled until the daily mail and their readers are dead, and not replaced.

To make changes it requires lots of will from the government, and the consent of a bunch of people who are unlikely to give it.

medical regulation is fucking trivial by comparison. Most of it is arms length and technical. it can be changed according to evidence, rather than gut feeling. Its only in a few cases are there actual legal hard lines (like embryo research, and vivisection)

Fully agree - I think there's a core legalism inherent with especially the british political class. The first indication is always to build more guardrails and take fewer risks. It ends up killing innovation

People may not realise how bad uk planning law is unless they are here. Anybody can veto a development for any reason, and there is no disincentive to do so even if it is found to be spurious. They can just do it again. A development isn't just building either, it can be as simple as changing the use of something or making an improvement to it. On top of that are all the actual regulations, newt surveys, listed buildings restrictions, etc, and the many months of associated delays and costs with each one. In London the body set up after Grenfell now has a 10 month backlog and approval rate of 30%, so nothing is built in London except storage centres.

Speaking as someone from the US, this is by design. If there was a single track for approval, it'd be really easy for a motivated group to get stuff done. By requiring multiple overlapping layers of approvals (often in direct contradiction to one another) it ensures each layer of government can get their hands in the very much real cookie jar.

For those of modest means there is also the "fail first" insurance process where you need to use less expensive therapies before a more appropriate therapy is approved. Each failure can be costly to a patient's health, often exacting irreversible comorbidities, not even considering lost work, family wellbeing, and pain/suffering.

For those with rare diseases, insurance also doesn't help with "N of 1" efforts. A case report to consolidate critical details would be invaluable. Yet there's no administrative path to fund this personally let alone with insurance help. Without summary case report it's harder to see the big picture, get a care team on the same page, and dial in on the underlying disease mechanism.

Pharma is also not enthusiastic about "off label" use of their medications. They are happy to lower costs when insurance denies coverage for an indicated diagnosis, to demonstrate benefit so it then becomes covered. However, "off label" use is often full cash fare, making it impossible for common folk to perform low-risk physician-guided experiments when standard therapies are ineffective.

We can and should do so much better.

Imagine if we let doctors do medicine instead of letting profiteering beancounters optimize for number go up.

I can see why some things landed here. Medicine is expensive. Desperate people are more susceptible to fraud. Yet things are improving: someone like me would be long dead a generation ago.

We should look at these challenges holistically and think about better fiscal/social engineering of our marketplaces. Alvin Roth's book, "Who Gets What and Why", is a good introduction to identifying market failures and thinking about how to address them.

> Medicine is expensive.

The whole point is that, past a certain point, it really isn't.

We do let them do that if you are willing to pay them for it. The fact is that if you "let doctors do medicine" without any cost benefit analysis, then you really aren't going to like the cost.

You mean we do let them do that unless you aren't able to pay them for it. If you're the minority that has very large sums of money your doctors can decide what treatment works best, but for everyone else their healthcare is dictated by some company whose only concern is increasing the amount of profit they rake in and they'd happily see you dead if it would improve their bottom line.

Your comment contains nothing of value. If you have a better way to allocate scarce resources please state it.

In the US the allocation process itself is very expensive. Something like a third of the cost goes towards paying the administrative costs of navigating the byzantine insurance rules.

These resources are only scarce because of artificial scarcity.

This is especially true of patent medicines, where it's government enforced artificial scarcity.

If not for the government enforced artificial scarcity then many of those medicines wouldn't exist in the first place. Bringing a new drug to market costs >$1B now, largely due to clinical trials. No one is going to do that without patent protection.

Medical patents should come with compulsory licensing requirements. Nobody's saying that research houses shouldn't get paid, just that the monopoly needs to end.

Step therapy is required in countries with universal healthcare, too.

It can actually be harder to get access to new therapies in countries with universal healthcare because they’re more uniform and strict in what they allow.

For a relatable example: The UK just raised the age of eligibility for COVID vaccines all the way up to 75 years old: https://www.mirror.co.uk/news/health/covid-russian-roulette-... Contrast this with the US where COVID vaccine coverage is a basic expectation of health insurance for all ages. And that’s for a simple, cheap medicine without step therapy! It doesn’t matter if your doctor thinks you need it, the rules are set from the top.

> Step therapy is required in countries with universal healthcare, too.

This is something Americans with strong opinions about healthcare but little time spent researching it never seem to know.

It can be harder, but it's specific to the country/system. Here it Taiwan you can walk into any clinic with stock and get a (NHI covered) vaccine any time.

There are other things to complain about of course, but the rules for what's covered ate generally logical. Non-covered medication is affordable to, which helps.

To be honest, given the issues with the NHS, the UK isn't the best example to use for a "universal healthcare" system these days.

Worth noting that "eligibility for COVID vaccines" is for "free at the point of delivery" NHS treatment - you can still get it elsewhere at any age. Boots (a major chain of pharmacies) do it for £98:

https://www.boots.com/online/pharmacy-services/covid-19-vacc...

Sorry but this not actually true.

THe most appropriate treatment is required, not "step therapy". For antibiotics this makes sense, as last mile, powerful antibiotics need to be used sparingly.

The same with cancer, it'll be treated according to the requirements of the cancer, with guidance from nice about the most effective therapy.

Is it perfect? no.

Does it lead to mistakes? yes.

It is better than american style insurance denying care based entirely on price? 100%

> the US where COVID vaccine coverage is a basic expectation of health insurance for all ages

That wasn't a sure thing this past year and there's always a risk it won't be next year. (https://www.pbs.org/newshour/health/fact-checking-rfk-jr-s-c...)

We do. They just can’t charge it to a third party to the relationship. As a doctor you are welcome to provide services at cost.

We have something similar in Brazil. Our public system, SUS, has treatment protocols where you sometimes need to try drug A before you can get access to drug B. BUT the protocol is written by a medical committee - CONITEC -, not by an insurance company desperately trying to save money. When I need to skip a step, I write a lenghthy clinical justification and send it up. And it can take time, sometimes months. It's super frustrating, yes, but at the very least I know the person reviewing it is not incentivized to deny it. They are checking if my reasoning makes sense, not calculating how much it will cost their employer. That's the part that's hard to explain to Americans, that the bureaucracy here is slow and annoying but it's not adversarial. Nobody's profiting from telling me my patient doesn't need a medication. In the US model someone literally is. That changes everything about the practice.

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?

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.

For example, running very large trials in a short time is very high effort.

Worth it

It's a trade-off: better info versus handling an immediate crisis. If it's not an immediate crisis, you can take more time.

Engineering is trade-offs.

People are dying of these diseases every day

And killing them with an insufficiently tested treatment is not optimal.

For patients. But maybe not to the companies which would have to pay for these large expedited trials

a) Risk vs. reward -- not that I'm saying we're making the right balance decisions, but the correct speed depends on that balance in general.

b) The current administration is extremely unlikely to make vaccine approvals faster. If anything their instincts are the other way around.

Everything not mRNA failed. Sometimes miserably with bad effects, and those effects have all been swept under the rug. Some of the vaccines gave people lifelong sensitivities to the adenovirus vectors. I can go on and on.

We got damned lucky that mRNA vaccines against Covid work as well as they do. Nobody new a priori (go look at Derek Lowe's writing from "In the Pipeline" during it all) and "everything would strike out" was not off the table.

And the mRNA stuff only worked because people already had been working on mRNA vaccines for other things slowly over decades. We got "lucky" that Covid appeared when we had all the pieces in places (liposome encapsulation, alternate amino acid replacement, etc.)

Before advocating for "fast track", advocate for better and more stable funding on the "slow track" pure research that takes decades but feeds into this kind of thing. The work of Katalin Karikó was instrumental in this stuff and yet she had to swim through mountains of shit to do the research and was denied tenure. With better funding, this stuff could have been done a decade earlier.

The FDA didn't approve thalidomide, though! That was Europe!

I too, like everyone one else, often hate the tedious and often absurd, effort that bureaucratic procedures sometimes require, but this story doesn't make any sense to me.

We're talking about a guy who's used AI to make personalized ground-breaking medicine for his dog but says he spent three months typing a 100-pages long document for the red tape. In reality, current AI technology isn't particularly designed to help you making radical medical breakthrough on its own (at least yet), but is extremely proficient when comes to writing text that must just check boxes.

I'm sorry but how does that story not smells like complete bullshit to anyone reading this? Given that the guy telling his story is “an AI entrepreneur”, I'm almost 100% sure that the story is almost entirely made up for self-promotion.

> I'm sorry but how does that story not smells like complete bullshit to anyone reading this?

Because it strokes the anti-establishment anti-intellectual and anti-bureaucracy zones all at once, and a lot of nerds (with love) are contrarians. Us software guys like nothing better than a story about how a smart ass with a computer undid a problem seemingly created by institutions out of whole cloth.

I'm calling absolute 100% bullshit.

There's pictures of the dogs tumor progression and scientists from government labs validating his story.

Yeah. It's possible to think that there are cases where lowering the cost of first phase trials or making it relatively simple for people capable of offering informed consent to obtain access to existing safe medications currently undergoing trials for their specific ailments and thinking that a person who claims to have "designed an RNA vaccine" by asking an LLM to teach him about RNA and now wants to inject it into animals under his care might be the exact thing such laws were meant to restrict.

Plus as others have pointed out, LLMs are much better at generating something that looks like compliance documentation than they are at designing drugs (and providing generic background info on compliance processes than they are at relatively little-documented cutting edge research), so if most people aren't instantly sceptical of a yarn spun about how a layman with ChatGPT easily taught himself enough to find an RNA immunotherapy cure for his dog but then was stymied by the amount of typing involved in a 100 page document, it's a good indication of why barriers to even nominally consenting people trying experimental stuff exist.

The LLM did not design the drug. The LLM summarized some papers on how to design similar drugs, and then a dozen specialized tools were used in an established pipeline to design the drug. You people need to read the article and read the background before writing nonsense based on your assumptions.

Here's a previous comment of mine talking about personalized mRNA vaccines with useful citations: https://news.ycombinator.com/item?id=47210284

Funny how you keep skipping the unbelievable part of the story out of your replies: why would he spend 3 month hand typing a document that an LLM can definitely make at least 80% of it in one shot?

Have you ever tried writing a long, complicated document with an LLM? The last 20% takes 99% of the work.

> The last 20% takes 99% of the work.

Of course it does, since the first 80% take literal minutes! But if you compare to doing it entirely manually, it's still x5 more efficient.

Why would you do it all by hand (spending 200hours in the process…) when you're an “AI entrepreneur”…

In fairness, it pains me to see people as gullible as you are just because you like the idea of the story being true.

You don't understand how the technology in question works, and you're just making shit up because you don't want to admit to being wrong.

What are you alleging here anyways? That all the scientists quoted and photographed in the article discussing their part in making the vaccine are in on the game? That the Australian made the story up wholesale? Come on.

> You don't understand how the technology in question work

See my comment history. I do know very well how language models work. Thank you.

What I don't know is why you're claiming you disagree with the story reported here being bullshit (the story being almost literally “ChatGPT did the heavy lifting and the only reason we can't have nice thing is because red tape is blocking humanity”: “he used AI to teach himself about how a personalized vaccine could work, designed much of the process himself. […] The red tape was actually harder than the vaccine creation”), when you know very well it's bullshit because your comments describe what has most likely happened (ChatGPT did nothing much besides telling what could work and pointing towards which scientists to seek help from).

Again, literally no one question the fact that mRNA-based medicine has incredible potential, the bullshit here is not about the medicine: it's about red tape being the only bottleneck in a fantasyland where AI solves all the hard challenges.

True, and even more true in the case that you barely understand what you're doing. That's a feature rather than a bug of this sort of paperwork; the person who's simply pestered ChatGPT until it says "great idea" won't cross that threshold at all, whereas this guy [and the bioinformatics processing chain and experts in the loop he found] crossed it in his spare time. If it was just the "two hours a night typing" as quoted in the article, LLMs can do it in no time.

"ChatGPT better at finding expert advice than filling in compliance forms" and even "getting workable results from latest generation Open Source bioinformatics tools possible for smart laymen with minimal background reading; learning enough to prove they aren't dangerous only takes marginally longer" doesn't sound nearly as bad as "layman asks ChatGPT to cure his dog's cancer, only hard bit is writing enough words to convince gatekeepers" as rendered by news coverage of this (and not really elaborated on more by the TFA). A rendering which really should trigger people's bullshit filters.

Other fields crossed the computers can find potential solutions easily a lot earlier (any idiot can put dimensions into pretty dumb civil engineering tools and get answers that are probably correct; don't as me how I know!) and actually have higher barriers (no, even if you actually learn the relevant physics as well you will still need to pass some elements of your home design via someone with the right professional liability insurance linked to their experience and formal qualifications)

It's not a radical medical breakthrough, it's applying a technique already documented in the literature and years into human clinical trials. The LLM is just doing literature summary and planning. The most notable AI innovations here are in protein folding and binder prediction.

The bureaucracy isn't trying to be utilitarian, it's trying to be democratic, and the people don't want utilitarianism. No politician wants to be the one who removed the red tape that would've stopped the reckless professor from poisoning all those children with his botched clinical trial.

Regulatory systems need omsbuds within the government who can ask for help and explanations from all the agencies regulating a project yet are (primarily) accountable for helping projects succeed as soon as possible and (secondarily) responsible for providing transparent feedback to those agencies and the public where regulation is malfunctioning.

> 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.

They're called solid fuel rockets

> The exhaust gas (clinical data) spins the pump

Not really. Real-world data is used very heavily already and is far less helpful than we'd hope for in drug development.

It's much more like a pipeline.

This writer could be more inflammatory. Refusal to provide adequate or fair services to disabled is systemic or worse bigotry.

It's fine to encourage society to hold each family drawing income from medical corruption accountable

'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.

You're defending a government using force to prevent terminally ill people from voluntarily experimenting on themselves to find a cure and further our understanding of disease. It should not be easier for a layman to design and build a targeted mRNA vaccine then it is to navigate a regulatory maze.

> prevent terminally ill people from voluntarily experimenting on themselves to find a cure and further our understanding of disease

Those seem like a good starting point for standards: Is it voluntary? Are they of sound mind? Are they giving informed consent (to themselves)? Is the experiment likely to yield useful results?

There are many things you can't voluntarily do, such as experimenting with cures that involve opiods. Should we allow vulnerable, uninformed people to take dangerous drugs because they saw a YouTube video saying they would help? Try random gene editing?

The truth is, you probably could do those things and few would care unless you hurt someone else.

> using force

Yes, guns ablazing!

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

99% sure it's BS though.

How can anyone believe that a guy could use a text-generating AI to design a novel cancer treatment, but not write some compliance document?

Come on!

The LLM didn't oneshot the mRNA treatment, it merely suggested the idea. Most of the steps in the process were done with specialized tools. And no novel treatments were invented wholesale, it's more applying a documented process with existing open-source tools that's just too personalized and expensive to be offered by any vet.

I find this story perfectly plausible.

Why do you find the idea of a man complaining about having painstakingly hand typed a 100 page document over three month when he claims he can use an LLM in a way pretty much no-one has before him?

It's several orders of magnitude easier to get an LLM fill some kind of red tape than it could be to use it in the way he claims to have used it.

He is not using an LLM in some new and exciting way. The process of making a personalized mRNA vaccine looks something like this:

1. Collect and sequence patient's normal and tumor genomes 2. Predict immunogenic neoantigens from genome 3. Generate optimized mRNA sequence from neoantigens 4. Create vaccine from sequence

modulo some variations, which I wrote off the top of my head because I understand this technology.

Steps 1 and 4 are done by contracted labs. Steps 2 and 3 are doable through open-source computational tools and a little engineering. What does ChatGPT do here? ChatGPT explains the process, finds labs that will do 1 and 4 for pay, finds published algorithms and data for steps 2 and 3. It's barely more complicated than what ChatGPT would do to help a student with their homework.

Legal documents, on the other hand? Have you ever tried to get an LLM to do your taxes? It's not easy.

> Legal documents, on the other hand? Have you ever tried to get an LLM to do your taxes? It's not easy.

Taxes are numerate, which is where LLMs fuck up.

Legal documents are structured texts, which is where LLMs shine. Should you blindly trust the outcome? fuck no, but a good first pass is trivially achievable if you set the right parameters. and make sure its relevant to the right jurisdiction.

I'm amazed no-one has used the term "Regulatory Drawbridge". It's a classic thing that happens in a number of industries - the big players push for more and more regulation. It costs them money and time, but it makes a massive barrier for new incumbents who don't have the cashflow and manpower to work through the regulatory process.

Medicine is the classic example, but it's happening in the tech industry too. The FAANGs of the world took advantage of an unregulated landscape, but now that they're in the castle they're pulling up the drawbridge behind them.

(sidenote - this is why regulation like the Digital Markets Act in the EU should be great. It's only a cost to larger businesses. In practice we're not yet seeing the changes that it should create).

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.

Please show me the blood that zoning regulations are written in

The context is medical regulations.

What blood is the regulation that doctors can't see patients in other states written in?

There's no specific regulation that doctors can't see patients in other states. Each state simply operates their own medical licensing system. You could imagine a system that works differently, but getting there would require creating new rules and resolving new conflicts, not just removing some rule that exists today.

For example, there's a certain category of hot-button procedures that California believes are medically necessary but Texas will revoke your license for performing. To set up a shared licensing board you'd have to somehow find an acceptable compromise.

You have described every single regulatory problem anyone has ever complained about in the FDA: the default state is denial, and positive action is needed to carve permitted things out of it. If this is a categorical exemption to 'the regulations are written in blood', then you're failing to describe anything identifiable about the regulations at all.

The Revolutionary War.

That's not a regulation, it's a consequence of a bunch of individual regulations.

What's the alternative? Federal licensing would be good but poking around wiki it looks like the basis of medical licensing in the first place is "states' rights" so good luck with that. Reciprocity would also be good and hey! it turns out it's being worked on : https://www.ama-assn.org/system/files/fsmb-interstate-medica... https://imlcc.com

This a joke? Without it you can put dangerous industry next to residents. Texas fertilizer explosion, Bhopal gas leak, etc.

I beg people to step outside and look at recent history.

"Why is there byzantine regulation for this particular industry?"

because someone took the piss and killed loads of people. A good example is https://en.wikipedia.org/wiki/Carlill_v_Carbolic_Smoke_Ball_...

Where a conman made claims to lure the desperate and gullible.

The Vet case is instructive here. This is to stop suffering in animals.

The same with the people experimenting on themselves. THis is to avoid stuff like Tuskegee Syphilis Study, where unacceptable risks were taken to gain data.

tldr: these regulations are there to stop bad actors killing people for either profit, data or fun. Claiming ignorance as to _why_ these regulations exist is bad research and I would suggest is either incompetence or dishonesty.

This ridiculous arrogance pisses me off so much. In the name of safety and proper procedure, with the argument that it could do someone harm, we just let people die. No, we’re not going to give you permission to try a new drug that could potentially cure you, or much more likely give researchers valuable data about the drug. No, this is against protocol. No, it’s against your own safety, so please be so kind as to fuck off and die.

That is basically what we are telling patients who would gladly reduce the suffering of themselves and others. Because someone claims it is an irresponsible hazard to other people’s health. That it is supposedly immoral.

In the name of correct procedure and bureaucracy, someone lets other people suffer. This is what really is bizarrely immoral.

Am I going crazy here? A completely random person tells AI to generate a novel vaccine/compound, and people are actually upset that there were 3 months of regulatory hurdle he had to jump through before he was able to start injecting this new compound into an live animal's bloodstream? Really?

It's an animal, and a terminally ill one at that. What's your worst case scenario?

Is it that the dog dies faster than it would have?

That's not actually an issue. We already have vets who just put terminally ill pets down.

So, who does the bureaucracy help? Who's protected by it? Why is it there at all?

It is there to ensure an animal is not experimented on unnecessarily or with excessive pain. Discussing a process like this might require you to slightly look further than one mostly clear cut case.

Part of his filings will be actually stating the "terminally ill" part and having this approved by an ethics committee. Making a moral judgment here is the committee's actual role as not all cases are so "simple".

That entire 3 months process?

It could have been a single informal paper that says "the animal is terminally ill, my judgement call is that this is unlikely to cause excessive suffering and might help instead, even if the chances are low, and if my judgement is proven wrong and this appears to cause excessive suffering the animal will be put down humanely". Signed by the veterinarian and the owner.

Because the system is high speed low drag, and trusts the veterinarian and the owner to make reasonably good calls about pet health and suffering - unless proven otherwise by overwhelming evidence. The system trusts people by default, and that 3 months long process and an ethics board come into play when there's a suspicion that this trust may have been abused.

Of course, that's not the world we live in. Which is why we're having this conversation.

The animal is terminally ill and the vaccine's slated purpose is to cure that illness. If you're rich & terminally ill these kinds of regulatory mazes are less of a burden, but if you're poor you'll likely die before you can get approval.

The cure for cancer will come via a revamp of regulations. /s

A rich person engineering their own RNA modifications for their dog? Yeah, I don't want that and bureaucracy is how we voice that.

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.

That sounds about right. Lots of abuses have been perpetrated by opportunists, charlatans, fraudsters all for money, as you put it. I just want to make sure we correctly distinguish what is meant by "opportunists, charlatans, fraudsters."

In the spirit of full transparency, I've listed some of the most well-known cases. Others, due to the Iron Curtain and similar curtains are hard to document, due to lack of visual inspection. Just the same I've listed them for transparency's sake:

Western Bloc:

Tuskegee Syphilis Study (US, 1932–1972)

Project MKUltra (US/CIA, 1953–1973) Human radiation experiments (US, 1940s–1970s)

Porton Down nerve/chemical tests (UK, 1950s–1960s)

Ewen Cameron brainwashing/LSD experiments (Canada, 1950s–1960s)

Eastern Bloc:

Soviet Gulag prisoner chemical/medical experiments (USSR, 1930s–1950s)

Punitive psychiatry experiments on dissidents (USSR, 1950s–1980s)

Pre-1940s Germany:

Nazi eugenics forced sterilizations (1933 Hereditary Health Law; ~400,000 citizens)

Pre-1940s Japan:

Unit 731 biological/chemical experiments (est. 1936; pathogen injections, early vivisections on prisoners)

Axis Powers:

Nazi Germany: concentration camp medical experiments (Dachau/Auschwitz hypothermia, twins, sterilization; mainly 1941–1945)

Imperial Japan: Unit 731 & affiliates (vivisections, plague/anthrax tests; ~3,000+ direct deaths, 200k+ from field use)

Fascist Italy: No major documented equivalent programs

Asia:

Japanese-occupied territories (China, Manchuria, Korea, etc.): Unit 731 satellites (biological warfare tests on local citizens/POWs)

By the way, all the above instances are part of history.

Greed is greed, whether "Capitalist, Socialist or Communist-oriented." In my view there is no distinction between modern day and historic "opportunists, charlatans, and fraudsters." Greed is Greed!

Quite remarkable how you are unable to make the link between "unethical medical experiments bad" and "maybe we should have some sort of medical ethics regulating whether people are able to perform a medical experiment"...

Ok, now you are grasping at straws by trying to find faults in my logic. I am able to distinguish just fine. Most people, me included, are just tired of managing their deceases vs having an actual, permanent solution that works. The modern medical establishment's therapeutic approach has evolved to focus on the former and totally ignored the latter. In doing so, it has failed its patients, alienating them in the process, all in the name of greed. Self-interest and greed are universal concepts. Don't worry, once the singularity comes about, things will change, for better or worse, but hopefully for the better ;)

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.

Nonprofits constantly lobby congress for a huge range of reasons, but they also get results with a surprising amount of federal money going directly to such organizations independent of Medicare, Medicaid, etc.

> If people aren't getting sick

People also get sick outside the US.

People still get vaccinated in the US for diseases with effectively zero new US cases because they haven’t been eradicated worldwide and would come back as soon as we stop vaccinating people.

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.

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.

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.

"lax lab controls are a feature, not a bug" -Wuhan Institute of Virology

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.

The Pharmachy cartel will never let things like this happen.

Search for Barbara O'Nell, if I remember her surname right, she is Australian and was banned from practicing anything medicine related because she was using natural resources to help threat people that would otherwise, spend thousands of Australian dollars buying medicine. Her videos are awesome btw.

Barbara O’Neill promotes baking soda injections as a cancer cure and encourages people not to use antibiotics because she thinks they cause cancer. She’s a dimwit.

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