This link gives some idea about the Orphan drugs price and sufferers.
But it relates to insured people.
Perhaps they can extend the length of exclusivity of the drug in trade off for the yearly cost?
eg. 5yrs at $150k a year or 15yrs at $50k a year or such
https://www.npr.org/sections/health-shots/2017/01/17/509507035/high-prices-for-orphan-drugs-strain-families-and-insurers
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