Earlier quoted context omitted.
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
The bureaucracy blocking the chance at a cure
101–110 of 192 posts
Re: The bureaucracy blocking the chance at a cure
#102Re: The bureaucracy blocking the chance at a cure
#103Regulatory 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.
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Re: The bureaucracy blocking the chance at a cure
#104Earlier quoted context omitted.
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.
Re: The bureaucracy blocking the chance at a cure
#105As 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 hav…
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-...
Re: The bureaucracy blocking the chance at a cure
#106Am 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".
Re: The bureaucracy blocking the chance at a cure
#107For 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.
Re: The bureaucracy blocking the chance at a cure
#108Earlier quoted context omitted.
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
Re: The bureaucracy blocking the chance at a cure
#109For 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…
Imagine if we let doctors do medicine instead of letting profiteering beancounters optimize for number go up.
Re: The bureaucracy blocking the chance at a cure
#110Earlier quoted context omitted.
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.