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.

A metric other than profitability seems like a terrible target for private research which (outside of a charity or cause-driven org) needs to justify its expenses.

In the US alone, we have dozens of grants, programs, and funding sources for things like orphan/rare diseases.

The reason why it's less profitable is because it will help less people. If profitability didn't dictate what is researched, widespread diseases would get less researched and rare diseases - more researched, which would be a net negative.

IMO the issue isn't discovery and research, it's development. Unless companies foresee a good return for buying/licensing/etc rights to treatments, discovered drugs with potential just sit there.

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.

I find it makes more sense if you drop the corporate analysis and just think about people.

Money motivates them and is why they go into hospitals or research labs instead of staying home with their family or friends.

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?

Where and when?

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.

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.

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