Parents of kids with rare neuromuscular disorder want funding for expensive drug - (CTV News via NewsPoints Desk)

  • Families in British Columbia whose children have spinal muscular atrophy (SMA) are calling on Canadian provinces to offer Biogen's Spinraza to all children with the rare neuromuscular disorder, reported CTV News.

  • Health Canada recently approved the drug, but the Canadian Agency for Drugs and Technologies in Health, which advises the provinces on whether to cover the costs of new medications, recommended that Spinraza be used by only a subset of SMA patients.

  • The agency said in December that those children with the most severe form of SMA, Type 1, who are diagnosed in infancy, would benefit most. None of the provinces have so far agreed to fund the drug, according to the news source.

  • Biogen said it hopes to work with "healthcare systems and government to ensure that patients who may benefit will have access" to Spinraza, while parents of children with SMA are calling on the provinces to cooperate to negotiate with Biogen for a better price.

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