This morning, BBC News covered the story of my 19 year old constituent Jake Ogborne, who suffers from Spinal Muscular Atrophy Type 3. SMA is a serious degenerative condition that weakens muscles and causes problems with movement.
A treatment called Spinraza was approved for use in the UK last year, but some patients, including Jake, aren’t eligible for it, for completely arbitrary reasons. In Jake’s case it’s because he fails the ambulation test – which is the ability to take at least 5 steps – as he can now no longer walk. Without Sprinraza Jake’s condition will get steadily worse.
Along with Jake’s family and the campaign group Treat SMA, I’ve been pushing the Government to take action and change these criteria so that Jake can get help. A review of the criteria is due in coming months, so we’ll keep fighting – and in the meantime, a big thanks to the BBC Inside Out West team for highlighting Jake’s case.
You can watch the segment from BBC news here, starting at 9.35am: https://www.bbc.co.uk/…/bbc-news-bbc-news-at-9-21092020