Hi Potstock,
Governments normally pay for the treatment.
The reason the price is so high is because companies didn't bother trying to produce treatments for rare diseases because it wasn't worth it, as the market was so small and the costs involved in research and trials made it completely non cost effective.
So the US government brought out the likes of the orphan drug bill, so that companies could charge a lot for these drugs, and that would make it financially viable.
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