Re the pricing of Orphan Drugs. It's very true that US$150,000 a year is exorbitant and means that some people will miss out, for a while.However, the whole point of the system, as I understand it, is that after a decade or so the patent rights expire and the drug then becomes effectively 'free' worldwide. Future generations then have the benefit of a permanently available new treatment that was not available before.
The question is simply about how you fund and incentivise the development of a permanently available new treatment for a rare disease.The current system is one that is being used to do this, and the temporary high price of the drug simply reflects the huge cost and risks involved.
The alternative is you get someone to put up a $1 billion fund to develop and approve a successful new treatment for each orphan disease, and then open source the patent. Would that work better? Maybe, but who is going to put up that money (and you are still not guaranteed to get a successful treatment).
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