Spinal Muscular Atrophy

Kerry McCarthy Excerpts

Thursday 25th July 2019 Commons Chamber

[Kerry McCarthy (Bristol East) (Lab)]

It is just so cruel. There was a party to celebrate the fact that my 18-year-old constituent Jake Ogborne would have access to Spinraza. There was no mention of eligibility criteria, but suddenly he was told that he would not be eligible because he had not been able to walk in the past 12 months. He lost his ability to walk about 18 months or two years ago. I raised this in Prime Minister’s questions. I got a response that basically told me what we already knew and just set out the rules on this. It is immensely cruel for an 18-year-old to be faced with a decision like that.

[Sir John Hayes]

Yes. The condition, as the hon. Lady suggests, is often degenerative. In cases such as the one she describes, which, as I mentioned, is not the first time she has raised it, a young person who would normally develop as we all did could be left with arrested development or, even worse, declining capabilities. Indeed, that has happened to my constituent too.

The hon. Lady will know that, following strong advocacy by families of SMA patients, Muscular Dystrophy UK, TreatSMA, Spinal Muscular Atrophy UK and many clinicians, NICE and NHS England made amendments to the managed access agreement. While amendments are far from unwelcome, the disappointing truth is that the new criteria will still exclude some SMA patients desperate for treatment in the way she and others have articulated.

The intensely difficult battle fought by SMA patients has highlighted deeper flaws in the system. Families report feeling that they have been pitted one against another as advocacy groups are forced to decide whether to push for wider accessibility, and as a consequence risk delaying treatment for those eligible, or, alternatively, to take what is on offer and exclude a minority of the SMA family.

Life can be intensely difficult. All our bodies are complicated and vulnerable, intricate and fragile. We are regularly reminded, are we not, that they can go wrong in a multitude of hard-to-understand ways. I have argued many times in this House that a society should be gauged by how it cares for, protects and promotes the interests of its most vulnerable members.