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.
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.
As the benefactor of an extremely rare disease, it's not exactly unfair when you look at it from a societal view. If you solve a higher probability problem, you are helping far more people.
The real tragedy isn't the allocation of the resources we have spare, it's that so many of our resources are not spare because billionares and corporations have hoarded it.
Without changing the percent of allocation, and only changing input resources by capturing it back from billionaires as taxes, we could be helping far more people including super rare diseases.
And if you take a step back and look at Covid spending, what it was spent on, and how much fraud was involved, it's absolutely maddening that the government isn't instead spending money on solving actual problems its constituents face. We basically just shoveled free money at anyone who claimed to have a business, to no real effect.
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.
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?
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.
As much as I love this forum, the one thing I learned to never say is that it's normal and even good that people die (usually on threads about people trying to live forever).
I've never received such hateful responses on any other topic.
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.
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.
They hit their 60s and 70s because the health care system is good at fixing certain physical issues not bugs accumulating in the brain. The brain just like your OS cant just keep getting patched forever. So currently people just keep patching older wearing out hardware without any software upgrades available.
the reason your encouraged approach tends to produce poor results, is that you increase the distance between the decisions that need to be made and the people who understand how to make the decision or whether a decision is even valuable to make.
it is basically an unsustainable structure. there's not much value to replacing one structure which you might think is unsustainable with something equally or less sustainable that also produces worse results anyway.
another issue is that it can dilute responsibility and someone will take more assertive control anyway which further reduces the quality of decision making. someone still has to enact and enforce the decisions, so whoever does the enacting has to obey and whoever does the enforcing has to enforce the right thing. it's easy to end up with a bunch of people influencing things for their own reasons which have nothing to do with maximizing the production of good results.
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.
The real tragedy isn't the allocation of the resources we have spare, it's that so many of our resources are not spare because billionares and corporations have hoarded it.
Without changing the percent of allocation, and only changing input resources by capturing it back from billionaires as taxes, we could be helping far more people including super rare diseases.
And if you take a step back and look at Covid spending, what it was spent on, and how much fraud was involved, it's absolutely maddening that the government isn't instead spending money on solving actual problems its constituents face. We basically just shoveled free money at anyone who claimed to have a business, to no real effect.
C'est la vie, I guess.
Money motivates them and is why they go into hospitals or research labs instead of staying home with their family or friends.
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 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.
I've never received such hateful responses on any other topic.
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.
it is basically an unsustainable structure. there's not much value to replacing one structure which you might think is unsustainable with something equally or less sustainable that also produces worse results anyway.
another issue is that it can dilute responsibility and someone will take more assertive control anyway which further reduces the quality of decision making. someone still has to enact and enforce the decisions, so whoever does the enacting has to obey and whoever does the enforcing has to enforce the right thing. it's easy to end up with a bunch of people influencing things for their own reasons which have nothing to do with maximizing the production of good results.