Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

The bureaucracy blocking the chance at a cure

writingruxandrabio.com

Post reply on HN
Print view View original

121–130 of 192 posts

Re: The bureaucracy blocking the chance at a cure

#121

Post by hsuduebc2 »

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.

Re: The bureaucracy blocking the chance at a cure

#123

Post by terminalshort »

observationist wrote: post #109
clcaev wrote: post #107

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…

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

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.

Re: The bureaucracy blocking the chance at a cure

#124

Post by Aurornis »

observationist wrote: post #109
clcaev wrote: post #107

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…

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

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.

Re: The bureaucracy blocking the chance at a cure

#125

Post by terminalshort »

mindslight wrote: post #94
endymion-light wrote: post #14

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 hav…

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,…

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.

Re: The bureaucracy blocking the chance at a cure

#126

Post by SpicyLemonZest »

terminalshort wrote: post #113
BigTTYGothGF wrote: post #85

Earlier quoted context omitted.

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.

Re: The bureaucracy blocking the chance at a cure

#127

Post by D-Coder »

wbl wrote: post #101
D-Coder wrote: post #98

Earlier quoted context omitted.

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.

Re: The bureaucracy blocking the chance at a cure

#128

Post by ch4s3 »

Aurornis wrote: post #124
observationist wrote: post #109

Earlier quoted context omitted.

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

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 thi…

> 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.

Re: The bureaucracy blocking the chance at a cure

#129

Post by autoexec »

terminalshort wrote: post #123
observationist wrote: post #109

Earlier quoted context omitted.

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

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.

Re: The bureaucracy blocking the chance at a cure

#130

Post by mindslight »

terminalshort wrote: post #125
mindslight wrote: post #94

Earlier quoted context omitted.

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,…

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.
Post reply on HN