No fixes yet for BC's expensive drugs for rare diseases program five months after premier called for change (Times Colonist)

There have been no fixes to the process that funds and treats rare diseases with expensive drugs, five months after BC Premier David Eby said it was obvious the system wasn’t working.

Eby called for a review of the system and changes after his government had come under heavy criticism for its handling of the Charleigh Pollock case from Vancouver Island. The 10-year-old suffers from a rare neurodegenerative condition called Batten disease for which there is no cure.

Initially, the BC government backed the decision of an expert committee that recommended a more than $800,000-a-year treatment be discontinued. But under increasing public outcry, the government reversed course, citing experts in the U.S.

In response to Postmedia News questions this month, the BC Health Ministry said the review is still underway ...

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