That particular drug was on the news in Norway this week because it is so incredibly expensive that the state don't want to pay for it. We are talking 20-30k USD per month per patient.
I partially excused that mentally with a "but yeah, research is expensive", but now learning that it was paid for by donations ruins that argument.
The fact that the state don't want to pay for it is of course also debatable..
These CF drugs fundamentally fix one genetic defect that causes CF. Instead of kids dying of lung infections and needing transplants when they are 30, they lead almost normal loves. Seems like the kind of drugs that should cost a lot?
And the CF Foundation has (had) an ownership stake in the IP for the drug and sold it for $3.5B.
And guess what that money is going towards? More research and help for CF patients! They gave $575M to Vertex for next generation CF drugs.
I totally agree that the existence of these drugs make the world a better place. I also totally agree that there should be significant financial upside to developing drugs like these, after all we do want to incentivise making the world a better place.
But surely there must be a middle ground? This seems to be priced by a "what are people willing to pay for this?"(a lot, given its life saving/changing nature) vs "what do we need to charge for this, including a healthy profit for everyone involved". (much less, presumably?)
I fundamentally dislike, from the perspective of the patient, the thought that precisely /because/ the drug is desperately needed by someone through no fault of their own, it /deserves/ to be expensive.
The foundation getting a cut of the success and reinvesting in new opportunities sounds good though, thanks for pointing that out!
I partially excused that mentally with a "but yeah, research is expensive", but now learning that it was paid for by donations ruins that argument.
The fact that the state don't want to pay for it is of course also debatable..