Can a wealthy family change the course of a deadly brain disease? • Hacker News Board

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

#11

Post by zdragnar » Sat, Mar 07, 2026, 5:00 AM UTC

wjxgxey wrote: post #6

tylermcgraw wrote: post #2

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.

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.

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.

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

#12

Post by sokka_h2otribe » Sat, Mar 07, 2026, 5:03 AM UTC

renewiltord wrote: post #7

Incipient wrote: post #4

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.

[flagged]

Uhh, you know you could skip the vaccine and just call it a tax..

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

#13

Post by wjxgxey » Sat, Mar 07, 2026, 5:06 AM UTC

zdragnar wrote: post #11

wjxgxey wrote: post #6

Earlier quoted context omitted.

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.

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?

#14

Post by paulryanrogers » Sat, Mar 07, 2026, 5:13 AM UTC

Aurornis wrote: post #9

wat10000 wrote: post #5

Earlier quoted context omitted.

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?

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.

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

#15

Post by temp_praneshp » Sat, Mar 07, 2026, 5:15 AM UTC

wjxgxey wrote: post #13

zdragnar wrote: post #11

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's the response you have to the parent's anecdotes?

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

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

#16

Post by renewiltord » Sat, Mar 07, 2026, 5:17 AM UTC

sokka_h2otribe wrote: post #12

renewiltord wrote: post #7

Earlier quoted context omitted.

[flagged]

Uhh, you know you could skip the vaccine and just call it a tax..

That wouldn't guarantee subsidization of expensive treatments by cheap ones and therefore is fascist.

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

#17

Post by zdc1 » Sat, Mar 07, 2026, 5:27 AM UTC

wjxgxey wrote: post #13

zdragnar wrote: post #11

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.

You can't really blame the healthcare system for this. Alzheimer's and Dementia existed before modern medicine. The reality is that many fit, active, and otherwise healthy people will hit their 60s and 70s and will experience cognitive decline and Alzheimer's.

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

#18

Post by david_shi » Sat, Mar 07, 2026, 6:12 AM UTC

tylermcgraw wrote: post #2

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.

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

#19

Post by david_shi » Sat, Mar 07, 2026, 6:14 AM UTC

wjxgxey wrote: post #6

tylermcgraw wrote: post #2

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.

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.

If everyone had this attitude we'd still be dying of tuberculosis and countless other diseases.

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

#20

Post by silisili » Sat, Mar 07, 2026, 6:22 AM UTC

david_shi wrote: post #18

tylermcgraw wrote: post #2

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.

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.