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.
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 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.
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.
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.
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?
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.
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.
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.
I hope that one day you are not sad and angry anymore.
I remember when that observation was discredited as a conspiracy theory
If this was true, why wouldn't all of the countries with socialized medicine be doing it already?
Thank them for the fundamental research that lead to the COVID vaccine.