15 June 2016

First Minister Nicola Sturgeon today met with Michael Young who is petitioning on behalf of young boys with Duchenne to receive medication.

First Minister Nicola Sturgeon said:

Michael is brave young man campaigning not just for himself but the other young boys with Duchenne in Scotland.

I am pleased to note that the pharmaceutical company has already committed to going back to the Scottish Medicines Consortium. Today, I have written to the company to urge that the resubmission is submitted as a matter of urgency.

Since my last meeting with Michael and his parents we have instructed a nationwide roll-out of the Peer Approved Clinical System (PACS) for Ultra-Orphan Medicines, which will improve access to these sorts of medicines through a standard and consistent process across Scotland. Also, the pharmaceutical company confirmed at a public meeting in Parliament in June last year that it would continue Michael’s treatment after the end of the clinical trial.

We have also commissioned an independent review of how new medicines are accessed in Scotland by Dr Brian Montgomery, in which the consideration of how these sorts of medicines are assessed will be of key importance. I very much welcome that Michael’s mother, Michelle has already taken the time to provide details of her experience to Dr Montgomery.

We have made changes in recent years to how these types of drugs are assessed – to give patients and their clinicians a louder voice in these decisions. Dr Montgomery’s review will allow us to build on this and make further improvements.

We want to see a better system of getting to a company’s best offering on price first time round to reduce the undue stress to families and the reliance on resubmissions to the SMC.”

FM @NicolaSturgeon met Michael Young who is petitioning for boys with Duchenne to receive medication @MDUK_News pic.twitter.com/hIGMRVieV1

— First Minister (@ScotGovFM) June 15, 2016

The process of medicines being approved is undertaken by experts and is entirely independent of Government and Ministers.