Health minister says rare-disease funds denied again for B.C. girl Charleigh Pollock

A family from Langford, B.C., hoping to extend the life of their little girl who has a rare disease has been rejected again for coverage of medication that costs about $1 million a year.

Health Minister Josie Osborne says in a statement that she knows the outcome of the review process is not what the family of Charleigh Pollock wanted.

Osborne says she met with Pollock's parents last week to accept further information about Batten disease that they said hadn't been considered by the B.C. rare diseases expert committee, which first recommended funding for the girl's medicine be stopped.

But the statement says that information and much more was considered by the committee and the decision remains that the drug Brineura is no longer helping slow the progress of the girl's disease.

It says that cost was not considered and all provinces rely on clinical criteria recommended by Canada's Drug Agency.

B.C. is not the only jurisdiction grappling with the issue, the statement says, noting that the United Kingdom announced it would no longer provide coverage for Brineura for future Batten disease patients due to the limited evidence of its long-term effectiveness.

"This has been one of the most challenging issues that I have worked on since becoming health minister, and I take seriously my role to ensure that B.C. has drug review processes that are independent, evidence-based and treat people equally," Osborne says in the statement.