[flagged]
Every action carries with it a death risk.
You're over-generalizing in order to dismiss.
The emotional trial of clinical trials: like online dating with death risk
121–123 of 123 posts
Re: The emotional trial of clinical trials: like online dating with death risk
#122Wow, I'm really surprised he's still alive. This has been an interesting (and difficult) saga to follow on HN.
I'm also surprised, FWIW. In July 2023, I wasn't sure if my lifespan might be measured in weeks, and doctors conceded that, given how fast the tumors had recurred and metastasized, "weeks" was plausible.
Re: The emotional trial of clinical trials: like online dating with death risk
#123The 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.…
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…
> 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.