Scottish Access to Spinraza – PACE Meeting

SMC PACE Meeting – powerful patient testimonies convey the urgent need for Spinraza in Scotland

On 13th March we attended a special PACE (Patient and Clinician Engagement) meeting at the Scottish Medicines Consortium in Glasgow.
This meeting formed part of their appraisal process for Spinraza and is an additional stage that can be used to gain further patient information in the case of certain drugs, especially those for rare diseases.

Kathy Huffman (who, with her husband, tried to gain access to Spinraza under the EAP for her daughter, who sadly died before this was possible) joined Sheonad MacFarlane (whose daughter has SMA Type 2), to make the patient presentation.  Their testimonies were both powerful and moving and we are very grateful to them for taking this on.

We, along with SMA Support UK and Muscular Dystrophy UK had already made submissions to the appraisal process but were there to clarify and make sure that the meeting captured all the main points we had jointly wanted to put across, as part of our case for access to Spinraza in Scotland.

The SMC New Drugs Committee meets on 3rd April, which we have also been invited to attend.  Their decision will be made public around four weeks later and we provide an update as soon as this happens.




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