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The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. If you are an inmate, or a patient

The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. If you are an inmate, or a patient you're just happy once you're out, and don't want to spend more of the time to fix. And if you're a free or healthy person, why devote time to something that will likely not concern you? (It might some day, but few people are reflecting enough to realize this.) Respect to the authors for writing this. It will, in time, make a big difference as other people read - like compound interest that accrues slowly but steadily. I wish them all the best, hopefully one of the drug will work, and there will be some kind good way forward!

deleted 2y ago
[deleted]
faeriechangling 2y ago
As somebody with my own grievances against the medical system, it’s not just that it’s in my interest to dust my hands off and walk away, it’s that the medical system is a 9 headed gigantic hydra that I feel impotent to do anything about it without dedicating a huge swathe of my life to being a reformer and even then I’ll likely be shouting into the wind. The amount of parties which can have some interest in keeping a broken part of the medical system broken is staggering, it can extend from researchers to doctors to insurers to the government to institutions to businesses to the patients themselves and their families AT THE SAME TIME just because of the sheer amount of money that gets thrown around even if the actual medicine is nonsense. Reforms risk fucking with the money and you DO NOT fuck with the money!
readyman 2y ago
>The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. Why prisoners must be able to vote or you cannot claim to have a democracy
- VS1999 2y ago
  Sounds good to me. We've been trying democracy for a while and I'd like to try something else.
  - readyman 2y ago
    For the reason above and many more, it is simply wrong that we have been trying democracy.
refulgentis 2y ago
Frankly, I can't subscribe to this jaundiced viewpoint. They're going to great lengths to make rolls of dice. The unspoken is just as important as the spoken here, it's framed as maddening dashes through confusing red tape for crucial medical treatment, but truth is, it's grasping for agency in place you aren't supposed to have any in the face of the ultimate agency-remover. You can easily walk away from the article thinking clinical trials were a way to get cures to the public without having to go through all that messy trial stuff, and it's infuriatingly broken. It's not. It's people who are lucky to have time and energy to pursue long shots through a system that's not designed as a health care market.
- data_maan 2y ago
  > You can easily walk away from the article thinking clinical trials were a way to get cures to the public without having to go through all that messy trial stuff, and it's infuriatingly broken. It's not. This is where I strongly disagree. There's a movement out there that of you have a death sentence in form of a disease hanging over you, you should be allowed to try all kinds of I trialled medicine. But currently, in most cases, you're not allowed to. Then there's the issue about data sharing among hospitals. Are you really suggesting, when you mention that the system is not broken, that this is working well? I wasn't able to get a doctor look at JPEGs of X-rays, because the hospital IT system only accepts DICOM files, and he's only allowed to look at what passed through the hospital IT system. WTF?! There are all kinds of startups out there who's mission it is to fix this infrastructure, which just shows how broken the system is! > It's people who are lucky to have time and energy to pursue long shots through a system that's not designed as a health care market. You somehow imply that if you have the money, you should be ok with having to deal with mentioned brokenness (like have your assistant talk to the hospital nurse and have them play convert-a-DICOM before you speak to the doctor). I can't agree to that. I see zero reasons why a system "not designed as a health care market" should be broken like this; having a better system in place would massively help scientists to produce research faster since less time is lost with admin, data wrangling etc. The fact that rich people can get some use out of this system isn't proof that the current state is an acceptable one.
- datascienced 2y ago
Affric 2y ago
That’s not true. The problem is powerful vested interests which work against those advocating for patients at all stages: from vice lobbies including ultrapalatable food to insurance companies. The amount of money at stake in our acute healthcare system is huge.
anileated 2y ago
Unlike a prison you can be sure you will end up in the hands of the medical system sooner or later. You are very motivated to care about it.
- datascienced 2y ago
  I think people care about the prison system but the other way around “why did that guy get let out so soon!”

deleted 2y ago

[deleted]

faeriechangling 2y ago

As somebody with my own grievances against the medical system, it’s not just that it’s in my interest to dust my hands off and walk away, it’s that the medical system is a 9 headed gigantic hydra that I feel impotent to do anything about it without dedicating a huge swathe of my life to being a reformer and even then I’ll likely be shouting into the wind. The amount of parties which can have some interest in keeping a broken part of the medical system broken is staggering, it can extend from researchers to doctors to insurers to the government to institutions to businesses to the patients themselves and their families AT THE SAME TIME just because of the sheer amount of money that gets thrown around even if the actual medicine is nonsense. Reforms risk fucking with the money and you DO NOT fuck with the money!

readyman 2y ago

>The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. Why prisoners must be able to vote or you cannot claim to have a democracy

VS1999 2y ago
Sounds good to me. We've been trying democracy for a while and I'd like to try something else.
- readyman 2y ago
  For the reason above and many more, it is simply wrong that we have been trying democracy.

refulgentis 2y ago

Frankly, I can't subscribe to this jaundiced viewpoint. They're going to great lengths to make rolls of dice. The unspoken is just as important as the spoken here, it's framed as maddening dashes through confusing red tape for crucial medical treatment, but truth is, it's grasping for agency in place you aren't supposed to have any in the face of the ultimate agency-remover. You can easily walk away from the article thinking clinical trials were a way to get cures to the public without having to go through all that messy trial stuff, and it's infuriatingly broken. It's not. It's people who are lucky to have time and energy to pursue long shots through a system that's not designed as a health care market.

data_maan 2y ago
> You can easily walk away from the article thinking clinical trials were a way to get cures to the public without having to go through all that messy trial stuff, and it's infuriatingly broken. It's not. This is where I strongly disagree. There's a movement out there that of you have a death sentence in form of a disease hanging over you, you should be allowed to try all kinds of I trialled medicine. But currently, in most cases, you're not allowed to. Then there's the issue about data sharing among hospitals. Are you really suggesting, when you mention that the system is not broken, that this is working well? I wasn't able to get a doctor look at JPEGs of X-rays, because the hospital IT system only accepts DICOM files, and he's only allowed to look at what passed through the hospital IT system. WTF?! There are all kinds of startups out there who's mission it is to fix this infrastructure, which just shows how broken the system is! > It's people who are lucky to have time and energy to pursue long shots through a system that's not designed as a health care market. You somehow imply that if you have the money, you should be ok with having to deal with mentioned brokenness (like have your assistant talk to the hospital nurse and have them play convert-a-DICOM before you speak to the doctor). I can't agree to that. I see zero reasons why a system "not designed as a health care market" should be broken like this; having a better system in place would massively help scientists to produce research faster since less time is lost with admin, data wrangling etc. The fact that rich people can get some use out of this system isn't proof that the current state is an acceptable one.
datascienced 2y ago

Affric 2y ago

That’s not true. The problem is powerful vested interests which work against those advocating for patients at all stages: from vice lobbies including ultrapalatable food to insurance companies. The amount of money at stake in our acute healthcare system is huge.

anileated 2y ago

Unlike a prison you can be sure you will end up in the hands of the medical system sooner or later. You are very motivated to care about it.

datascienced 2y ago
I think people care about the prison system but the other way around “why did that guy get let out so soon!”