Families are demanding to know why a drug which can extend the life of severely ill boys is not being made widely available, despite being given the go-ahead by the NHS last year.
At a meeting with parents in Glasgow, the health secretary said he will speak to NHS bosses to ensure Givinostat is rolled out as quickly as possible.
That same meeting though heard some health boards are “months” behind others – and time for those affected is running out.
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