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The NHS negotiates prices directly with drug companies. Usually this situation happens if a drug company refuses to offer a reasonable price. Yes this sucks for anybody who depends on such a drug, but there is no alternative.

This is misleading at best. The NHS Comissioning Board has commissioned Sapropterin for use. However, due to its extraordinarily high costs and limited efficacy compared to maintaining a restricted diet, it is only prescribed in scenarios where there is an urgent clinical need for treatments like Sapropterin.

The NHS Commissioning Board's report on Tetrahydrobiopterin/Sapropterin/Kuvan is here: https://www.england.nhs.uk/wp-content/uploads/2013/04/e12-p-...

Most likely that was based on a cost benefit analysis involving QALY. Which is logically a reasonable way to figure out how to spend Healthcare dollars. The US system is not.