In the US alone, we have dozens of grants, programs, and funding sources for things like orphan/rare diseases.
Money motivates them and is why they go into hospitals or research labs instead of staying home with their family or friends.
What sucks is when drugs are deliberately not brought to market, but kept in portfolios, because it might impact sales of other existing cashcows. For example, Gilead has a history of staggering the release of new drugs only once their patents expire for similar drugs they already have on the market.
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
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've never received such hateful responses on any other topic.
(Tech-related side note: This is why companies build mountains of tech debt unless there's a former engineer running the show.)
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.
Anyways, in case you're serious: there is a famous thought experiment about healthcare: should a hospital administrator approve a complex and expensive treatment to save a 7 year old girl, with a 100% success probability? Or more to the point: is approving this a "good" act, or a "bad" act? The unintuitive answer is that it depends on the opportunity cost long term, and the math is far from obvious. The quick answer is often "not even wrong" - it simply ignores a lot of facts down the line. The same cash can be used very boringly to do maintenance or to buy a piece of life saving equipment.
And it gets very dirty very fast. The easy version is pay for the operation vs buy an MRI machine - in this case you can at least compare apples to apples, if you squint - an MRI machine also saves lives. But if the alternative is renovating a waiting room, you're really off the deep end. Because doing it one time it's an obvious decision: just save the life. And it's not even bad as a general policy: have waiting rooms be a bit dusty, if this means spending more money on treatments. But... how much to cut, exactly? And then you have second order effects: throwing a moderate amount to waiting rooms can make them look a lot better, while having it linger in disrepair can make people actually avoid the hospital (if they can't even paint the walls, why would you trust them with your life?).
And all of this is assuming the hospital admin actually has mental bandwidth and latitude to make this decision. In practice, he's looking at the kid's mom when he has to turn her down because the operation money would pay for renovating a whole hospital wing. And the mom is an influencer with a large following.
> democratize the means of production
This means having humans make such decisions, and even worse, it means a committee or a mob will make such decisions. Zero skin in the game, all vibes and feelings. Some girls will get saved, but I've seen how hospitals look in such a system, and it's not good.
To note: the US system may or may not be "democratized", but it managed to have exactly the same flaws - most decisions are taken by humans in a bureaucracy. The government simply wrote the rules then outsourced the bureaucracy and the blame to private corporations.
But which has better food?
https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patie...
* Quality of life improvement for x people?
* x people cured of [SOME DISEASE]?
(etc)
Those seem like pretty good ideas of the kind of targets we should have. But as you mention, those seem to only be considered for cause driven places or charities.
For a private company, QOL for someone doesn’t pay the researcher, laboratory chemical supplier, or lab’s landlord. Money does.
You won’t get a cure or treatment if you can’t discover it, get it approved, or distribute it, all of which costs (a lot) of money.
Inevitably, the bigger the quality of life improvement or more significant the impact = more money, so those measures are already indirectly considered.
It’s only incredibly rare diseases that aren’t receiving active research efforts.
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.
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.
Death is inevitable, but that doesn't mean we need to accept that all the things that could kill us are also inevitable.
I hope that one day you are not sad and angry anymore.