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Can a wealthy family change the course of a deadly brain disease?

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Re: Can a wealthy family change the course of a deadly brain disease?

#31
post #23

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…

I don't know how much longer it will last but the US government invests significant resources into rare diseases in order to improve outcomes where the normal market wouldn't otherwise support the r&d.

Re: Can a wealthy family change the course of a deadly brain disease?

#32
post #8

Earlier 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.

It's a little bit the opposite. Private groups are focused on profits but there are gov programs to support the rare disease research that would otherwise go unfunded in a pure market system.

Re: Can a wealthy family change the course of a deadly brain disease?

#33
post #3

This 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

Where and when?

Re: Can a wealthy family change the course of a deadly brain disease?

#34

This 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.

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 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?

#35
post #13

Earlier 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.

That would happen even if there was no medicine at all. It's not like in the natural world disease and dying is smooth. Individual systems fall apart and then the rest of the organism dies slowly or quickly.

Re: Can a wealthy family change the course of a deadly brain disease?

#36

Earlier 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.

Profitability works because it is/was a good proxy for utility. This breaks as wealth becomes unevenly distributed.

Re: Can a wealthy family change the course of a deadly brain disease?

#37

This 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.

The reason why it's less profitable is because it will help less people. If profitability didn't dictate what is researched, widespread diseases would get less researched and rare diseases - more researched, which would be a net negative.

Re: Can a wealthy family change the course of a deadly brain disease?

#38

If so, good for them, good for the humanity, but what we actually must do is to ~~expropriate~~ ~~socialize~~ democratize the means of production.

Poe's law? Can't really tell, with the internet these days. Things are so polarized that people talk from and to their tribe and the message is often understood to be obvious.

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?

#39

Earlier 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…

Didn't they also effectively cure Hep C?

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?

#40
post #28

Earlier 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.

A few generations back, it was expected that half of your children would die before they reached their fifth birthday.

Death is inevitable, but that doesn't mean we need to accept that all the things that could kill us are also inevitable.

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