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.
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.
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.
Inaction is not a safe action. Inaction has a price. And sometimes a death toll too.
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.
This avoids “cutting down all the laws to punish the devil”. 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.
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.
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.
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.
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.
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.
What is the relevance of law and law enforcement around online messaging to renewable energy legislation?
https://apnews.com/article/charlie-kirk-meme-tennessee-arres...
Or if you want some actual context rather than twitter outrage bait
> Lucy Connolly, 42, whose husband serves on Northampton Town Council, pleaded guilty in September after posting the expletive-ridden message on X the day three girls were stabbed to death in July 2024.
> She was released from HMP Peterborough earlier after she was handed a 31-month prison sentence in October at Birmingham Crown Court.
Like this one? I mean this is not some hard to find secret.
Sources:
https://www.bbc.com/news/uk-england-leeds-68448867 (does not quote a single sticker that he was jailed for)
https://www.gbnews.com/news/sam-melia-free-speech-activists-...
But we should probably pay attention to what was written on the stickers.
The UK jails people for extreme incitement
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.
Engineering is trade-offs.
b) The current administration is extremely unlikely to make vaccine approvals faster. If anything their instincts are the other way around.
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.
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.
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.
It's fine to encourage society to hold each family drawing income from medical corruption accountable
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.
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
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!
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?
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 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.
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.
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.
> 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.
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!
Suggesting otherwise is projecting your own fears not representative of reality.
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.
I mean different countries have different regulatory systems....
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.
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
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.
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.
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.
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.
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.
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?
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.
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.