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Patient Presentation at the SMC PACE Meeting

19 March 2018

On 13th March, Kathy Huffman (who, with her husband, tried to gain access to the Type 1 Expanded Access to Nusinersen Programme for her daughter who sadly died a year ago) joined Sheonad MacFarlane, whose daughter has SMA Type 2, to make the patient presentation to the Scottish Medicines Consortium (SMC) Patient and Clinical Engagement (PACE) meeting. Their testimonies were very powerful and moving and we are very grateful to them for taking this on. SMA Support UK’s Support Services Manager, the SMA Trust’s CEO, and Muscular Dystrophy UK’s Campaigns and Engagement Manager, were there to support them and answer any questions. We worked together to make a strong case for access.

The SMC meets on 3rd April. Although the Committee will vote at the meeting on whether to accept or not to recommend the medicine for use by the NHS in Scotland, this decision is not made public until approximately four weeks later. We will update you as soon as this happens.