Earlier 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…
Can a wealthy family change the course of a deadly brain disease?
31–40 of 45 posts
Re: Can a wealthy family change the course of a deadly brain disease?
#32Earlier quoted context omitted.
That's one reason why privatised health is rubbish. "profitable" treatments should be used, in part, to subsidise the cost of unprofitable ones.
No medical system, public or private, has infinite money. There will always be decisions made about which conditions get research and which don't. It's unlikely that a disease this rare would be prioritized by a purely government run system, either. There are too many more common diseases to address first.
Re: Can a wealthy family change the course of a deadly brain disease?
#33This 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.
> diseases that wouldn’t be profitable for pharmaceutical companies I remember when that observation was discredited as a conspiracy theory
Re: Can a wealthy family change the course of a deadly brain disease?
#34This 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.
What sucks is when drugs are deliberately not brought to market, but kept in portfolios, because it might impact sales of other existing cashcows. For example, Gilead has a history of staggering the release of new drugs only once their patents expire for similar drugs they already have on the market.
Re: Can a wealthy family change the course of a deadly brain disease?
#35Earlier quoted context omitted.
Dementia is a terrible way to go, both for the people who get it and for their loved ones who are with them. One day, my grandmother forgot English when my uncle was visiting and kept speaking in her native tongue and got so mad because nobody understood her. That was one of the few amusing anecdotes from get decline. The rest are just depressing. Watching your father cry because he went to the hardware store and cou…
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.
Re: Can a wealthy family change the course of a deadly brain disease?
#36Earlier quoted context omitted.
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.
Re: Can a wealthy family change the course of a deadly brain disease?
#37This 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.
Re: Can a wealthy family change the course of a deadly brain disease?
#38If so, good for them, good for the humanity, but what we actually must do is to ~~expropriate~~ ~~socialize~~ democratize the means of production.
Anyways, in case you're serious: there is a famous thought experiment about healthcare: should a hospital administrator approve a complex and expensive treatment to save a 7 year old girl, with a 100% success probability? Or more to the point: is approving this a "good" act, or a "bad" act? The unintuitive answer is that it depends on the opportunity cost long term, and the math is far from obvious. The quick answer is often "not even wrong" - it simply ignores a lot of facts down the line. The same cash can be used very boringly to do maintenance or to buy a piece of life saving equipment.
And it gets very dirty very fast. The easy version is pay for the operation vs buy an MRI machine - in this case you can at least compare apples to apples, if you squint - an MRI machine also saves lives. But if the alternative is renovating a waiting room, you're really off the deep end. Because doing it one time it's an obvious decision: just save the life. And it's not even bad as a general policy: have waiting rooms be a bit dusty, if this means spending more money on treatments. But... how much to cut, exactly? And then you have second order effects: throwing a moderate amount to waiting rooms can make them look a lot better, while having it linger in disrepair can make people actually avoid the hospital (if they can't even paint the walls, why would you trust them with your life?).
And all of this is assuming the hospital admin actually has mental bandwidth and latitude to make this decision. In practice, he's looking at the kid's mom when he has to turn her down because the operation money would pay for renovating a whole hospital wing. And the mom is an influencer with a large following.
> democratize the means of production
This means having humans make such decisions, and even worse, it means a committee or a mob will make such decisions. Zero skin in the game, all vibes and feelings. Some girls will get saved, but I've seen how hospitals look in such a system, and it's not good.
To note: the US system may or may not be "democratized", but it managed to have exactly the same flaws - most decisions are taken by humans in a bureaucracy. The government simply wrote the rules then outsourced the bureaucracy and the blame to private corporations.
Re: Can a wealthy family change the course of a deadly brain disease?
#39Earlier quoted context omitted.
Seems insane that profitability so heavily dictates what is researched and what isn't.
IMO the issue isn't discovery and research, it's development. Unless companies foresee a good return for buying/licensing/etc rights to treatments, discovered drugs with potential just sit there. What sucks is when drugs are deliberately not brought to market, but kept in portfolios, because it might impact sales of other existing cashcows. For example, Gilead has a history of staggering the release of new drugs only…
https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patie...
Re: Can a wealthy family change the course of a deadly brain disease?
#40Earlier quoted context omitted.
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.
Death is inevitable, but that doesn't mean we need to accept that all the things that could kill us are also inevitable.