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

https://www.science.org/content/article/can-wealthy-family-change-course-deadly-brain-disease
26•Snoozus•2h ago

Comments

tylermcgraw•1h ago
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.
yieldcrv•46m ago
> diseases that wouldn’t be profitable for pharmaceutical companies

I remember when that observation was discredited as a conspiracy theory

wat10000•40m ago
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?
Aurornis•34m ago
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?

paulryanrogers•13m ago
The US already was, and to since extent still does. Same in the UK and other parts of Europe. Government funds a lot of medical R&D.

Thank them for the fundamental research that lead to the COVID vaccine.

Incipient•43m ago
That's one reason why privatised health is rubbish. "profitable" treatments should be used, in part, to subsidise the cost of unprofitable ones.
renewiltord•36m ago
I frequently tell people this. We can solve so many illnesses cheaply. Instead we should charge a lot of money and spend that money on things like haemophilia that affect a few people. Imagine a world where the flu vaccine and COVID-19 vaccine cost $1000 each shot. We could mandate it and then the enormous profits we make we could dedicate to things like this family's illness. All we need is for the government to take control and jack up the prices and then to make it illegal to not get the flu shot.
sokka_h2otribe•24m ago
Uhh, you know you could skip the vaccine and just call it a tax..
renewiltord•9m ago
Then wouldn't guarantee subsidization of expensive treatments by cheap ones and therefore is fascist.
Aurornis•36m ago
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.

wjxgxey•40m ago
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.
zdragnar•26m ago
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 couldn't remember how to get home and had to ask an employee to call his family for him, for example, was particularly tough.

wjxgxey•21m ago
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.
temp_praneshp•11m ago
That's the response you have to the parent's anecdotes?

I hope that one day you are not sad and angry anymore.

georgeburdell•26m ago
I 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.

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