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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?

#41

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

There are two restaurants, one owned by a capitalist and the other by the community.

But which has better food?

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

#42

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.

> A metric other than profitability ...

* Quality of life improvement for x people?

* x people cured of [SOME DISEASE]?

(etc)

Those seem like pretty good ideas of the kind of targets we should have. But as you mention, those seem to only be considered for cause driven places or charities.

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

#43
post #28

Earlier quoted context omitted.

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.

There is no we. You can talk about what you accept or dont accept for yourself. Not for anyone else unless you take responsibility for their life if something bad happens. And currently when some unintended side effect happens or quality of life degenates guess what the health care system does? Just gives you more bills and asks you to talk to their lawyers. Its very easy to talk about "we" have to do this and that. But the test is always who takes responsibility after things dont go the way they think.

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

#44

Earlier quoted context omitted.

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.

> A metric other than profitability ... * Quality of life improvement for x people? * x people cured of [SOME DISEASE]? (etc) Those seem like pretty good ideas of the kind of targets we should have. But as you mention, those seem to only be considered for cause driven places or charities.

As they should be?

For a private company, QOL for someone doesn’t pay the researcher, laboratory chemical supplier, or lab’s landlord. Money does.

You won’t get a cure or treatment if you can’t discover it, get it approved, or distribute it, all of which costs (a lot) of money.

Inevitably, the bigger the quality of life improvement or more significant the impact = more money, so those measures are already indirectly considered.

It’s only incredibly rare diseases that aren’t receiving active research efforts.

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

#45
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.

I mean sure, nothing has infinite money...but better to redirect some profits to other treatments, than to extract them all for shareholders?
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