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?
#2This 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.
Re: Can a wealthy family change the course of a deadly brain disease?
#3This 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?
#4This 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.
That's one reason why privatised health is rubbish. "profitable" treatments should be used, in part, to subsidise the cost of unprofitable ones.
Re: Can a wealthy family change the course of a deadly brain disease?
#5This 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
I’ve never seen that discredited. Are you confusing the obvious fact that they won’t pursue unprofitable drugs with the much more dubious idea that they won’t pursue profitable cures because ongoing treatment is even more profitable?
Re: Can a wealthy family change the course of a deadly brain disease?
#6This 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.
Re: Can a wealthy family change the course of a deadly brain disease?
#7This 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.
That's one reason why privatised health is rubbish. "profitable" treatments should be used, in part, to subsidise the cost of unprofitable ones.
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Re: Can a wealthy family change the course of a deadly brain disease?
#8This 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.
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?
#9Earlier quoted context omitted.
> diseases that wouldn’t be profitable for pharmaceutical companies I remember when that observation was discredited as a conspiracy theory
I’ve never seen that discredited. Are you confusing the obvious fact that they won’t pursue unprofitable drugs with the much more dubious idea that they won’t pursue profitable cures because ongoing treatment is even more profitable?
The dubious idea is that eliminating private medical care systems would open up a world of research into treating very rare conditions with high R&D costs.
If this was true, why wouldn't all of the countries with socialized medicine be doing it already?
Re: Can a wealthy family change the course of a deadly brain disease?
#10I know another family like this. One partner still works, but the other one is essentially a full time advocate for an inherited disease that fewer than 100 people in the world are affected by. I don't think much money is involved, but they've changed the narrative about the disease and some researchers are taking them seriously.