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Parliamentary Debates and Questions

S5W-01739: Jackie Baillie (Dumbarton)

Scottish Labour

Date lodged: 1 August 2016

To ask the Scottish Government what action it is taking to facilitate consistent access to the Duchenne muscular dystrophy treatment, ataluren (Translarna), through NHS boards and the peer approved clinical system for ultra-orphan medicines.

Answered by: Shona Robison 25 August 2016

The manufacturer’s route to market for Ataluren is through the long standing independent Scottish Medicines Consortium (SMC) process. In April 2016 the SMC decided not to recommend Ataluren for routine use in Scotland because the balance of costs and benefits meant it was not considered to offer value for money. We understand the company will be making a resubmission and would urge them to do so at a fair price to ensure access is as wide as possible. We do think more can be done to build on the progress to date on access to medicines which is why we asked Dr Brian Montgomery to conduct an independent review which will report later in the summer.The initial pilot of the Peer Approved Clinical System for ultra-orphan medicines has been extended to cover all NHS boards. This means that access to licensed ultra-orphan medicines, such as Ataluren, that have not been recommended for use by SMC, can be considered across Scotland through a standard and consistent process. Where such alternative prescribing options are used the Scottish Government’s New Medicines Fund is available to cover the cost.