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.
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.
In the US alone, we have dozens of grants, programs, and funding sources for things like orphan/rare diseases.
* 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.
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.
https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patie...
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.
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've never received such hateful responses on any other topic.
Death is inevitable, but that doesn't mean we need to accept that all the things that could kill us are also inevitable.