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Table 4 Context to the Spinraza debate

From: Public participation: healthcare rationing in the newspaper media

Spinraza as treatment for spinal muscular atrophy (SMA) was first evaluated by New Methods in 2017. The Norwegian Medicines Agency estimated the cost-effectiveness to be between US$2 M and 5 M/QALY depending on SMA subtype severity [50]. Spinraza was the first drug with any effect against the severe and rare degenerative neuromuscular disease SMA, and no patients could afford it privately. After the European Medicines Agency approved Spinraza in spring 2017 [51], Oslo University Hospital and the manufacturer, Biogen, provided free treatment to 10 Norwegian children with the severest subtype, SMA-1. In October 2017, the Decision Forum granted continued treatment for these patients, but denied treatment for other patients, thrice between October 2017 and February 2018, whilst the Decision Forum haggled for a better price. In February 2018, Spinraza was implemented for nonadult patients dependent on eligibility criteria [52], as clinical evidence only existed for minors [53]. Spinraza is currently being evaluated for adult patients [54].