If so, good for them, good for the humanity, but what we actually must do is to ~~expropriate~~ ~~socialize~~ democratize the means of production.
Can a wealthy family change the course of a deadly brain disease?
21–30 of 45 posts
Re: Can a wealthy family change the course of a deadly brain disease?
#22This is the model for rare diseases that wouldn’t be profitable for pharmaceutical companies. Spinal muscular atrophy (sma) is another example that comes to mind.
pfft just illusion of control theatre for people who are scared of death. Throw in some opportunists exploiting it. Just watch what happens if there are unintended side effects. Its okay to die guys. Everyone does it. The sky doesnt fall.
As much as I love this forum, the one thing I learned to never say is that it's normal and even good that people die (usually on threads about people trying to live forever).
I've never received such hateful responses on any other topic.
Re: Can a wealthy family change the course of a deadly brain disease?
#23Earlier quoted context omitted.
Seems insane that profitability so heavily dictates what is researched and what isn't.
I don't mean to disagree with you in spirit, but profitability is pretty closely entwined with probability. So companies are chasing solving problems that more people have, even if it's for the wrong reason.
As the benefactor of an extremely rare disease, it's not exactly unfair when you look at it from a societal view. If you solve a higher probability problem, you are helping far more people.
The real tragedy isn't the allocation of the resources we have spare, it's that so many of our resources are not spare because billionares and corporations have hoarded it.
Without changing the percent of allocation, and only changing input resources by capturing it back from billionaires as taxes, we could be helping far more people including super rare diseases.
Re: Can a wealthy family change the course of a deadly brain disease?
#24This is the model for rare diseases that wouldn’t be profitable for pharmaceutical companies. Spinal muscular atrophy (sma) is another example that comes to mind.
Seems insane that profitability so heavily dictates what is researched and what isn't.
I find it makes more sense if you drop the corporate analysis and just think about people.
Money motivates them and is why they go into hospitals or research labs instead of staying home with their family or friends.
Re: Can a wealthy family change the course of a deadly brain disease?
#25Earlier quoted context omitted.
I don't mean to disagree with you in spirit, but profitability is pretty closely entwined with probability. So companies are chasing solving problems that more people have, even if it's for the wrong reason.
As the benefactor of an extremely rare disease, it's not exactly unfair when you look at it from a societal view. If you solve a higher probability problem, you are helping far more people. The real tragedy isn't the allocation of the resources we have spare, it's that so many of our resources are not spare because billionares and corporations have hoarded it. Without changing the percent of allocation, and only chan…
Absolutely.
And if you take a step back and look at Covid spending, what it was spent on, and how much fraud was involved, it's absolutely maddening that the government isn't instead spending money on solving actual problems its constituents face. We basically just shoveled free money at anyone who claimed to have a business, to no real effect.
C'est la vie, I guess.
Re: Can a wealthy family change the course of a deadly brain disease?
#26Earlier quoted context omitted.
You know why that happens? Because the health care system slows natural decay rate of some subsystems (via pills/surgeries etc) while having nothing to offer for other subsystems. So rather than all subsystems decaying together we produce this mismatched state.
You can't really blame the healthcare system for this. Alzheimer's and Dementia existed before modern medicine. The reality is that many fit, active, and otherwise healthy people will hit their 60s and 70s and will experience cognitive decline and Alzheimer's.
They hit their 60s and 70s because the health care system is good at fixing certain physical issues not bugs accumulating in the brain. The brain just like your OS cant just keep getting patched forever. So currently people just keep patching older wearing out hardware without any software upgrades available.
Re: Can a wealthy family change the course of a deadly brain disease?
#27If so, good for them, good for the humanity, but what we actually must do is to ~~expropriate~~ ~~socialize~~ democratize the means of production.
the reason your encouraged approach tends to produce poor results, is that you increase the distance between the decisions that need to be made and the people who understand how to make the decision or whether a decision is even valuable to make.
it is basically an unsustainable structure. there's not much value to replacing one structure which you might think is unsustainable with something equally or less sustainable that also produces worse results anyway.
another issue is that it can dilute responsibility and someone will take more assertive control anyway which further reduces the quality of decision making. someone still has to enact and enforce the decisions, so whoever does the enacting has to obey and whoever does the enforcing has to enforce the right thing. it's easy to end up with a bunch of people influencing things for their own reasons which have nothing to do with maximizing the production of good results.
Re: Can a wealthy family change the course of a deadly brain disease?
#28Earlier quoted context omitted.
pfft just illusion of control theatre for people who are scared of death. Throw in some opportunists exploiting it. Just watch what happens if there are unintended side effects. Its okay to die guys. Everyone does it. The sky doesnt fall.
As much as I love this forum, the one thing I learned to never say is that it's normal and even good that people die (usually on threads about people trying to live forever). I've never received such hateful responses on any other topic.
Keep saying it. They will get used to it. Just like the earth is round. Thats how they "learn" most things in the first place. Not by discovering it by themseleves, but through repeating what the majority around them say.
Re: Can a wealthy family change the course of a deadly brain disease?
#29If so, good for them, good for the humanity, but what we actually must do is to ~~expropriate~~ ~~socialize~~ democratize the means of production.
In this case (and probably lots of others) the amount of resources needed to make an impact on the problem means that it would never work if the funding was decided through a democratic process. As soon as a committee of people are deciding to where to put resources they decide to share it between a number of worthy causes, and that means none of them get the bulk of what's available. If you have something that's percieved to be a relatively small problem by people it isn't directly impacting every day, that needs a lot of resources to fix it, then it's never getting done.
(Tech-related side note: This is why companies build mountains of tech debt unless there's a former engineer running the show.)
Re: Can a wealthy family change the course of a deadly brain disease?
#30This is the model for rare diseases that wouldn’t be profitable for pharmaceutical companies. Spinal muscular atrophy (sma) is another example that comes to mind.
Seems insane that profitability so heavily dictates what is researched and what isn't.
A metric other than profitability seems like a terrible target for private research which (outside of a charity or cause-driven org) needs to justify its expenses.
In the US alone, we have dozens of grants, programs, and funding sources for things like orphan/rare diseases.