Four months ago Spinraza was approved for 25 children with spinal muscular atrophy, SMA, in this State following a very protracted campaign by parents and a number of Deputies in this House. However, the children have not yet been given access to Spinraza. Patients and their parents have contacted Deputies in this House. They are very frustrated with the whole process. Spinraza has been approved for these 25 children, but with winter approaching, they still do not have access to it. When will they be given access to Spinraza?

I support my colleague on the issue of Spinraza. This matter was raised in the House on previous occasions. A commitment was given on 11 June, but four months on, patients still do not have access to this drug. I am concerned that the affected children are the victims of cuts within the Department of Health. Funding should have been made available in June. The wait has been incredibly long and frustrating. Most of the patients expected to be in treatment by July, not October or November.

I am very familiar with the campaign waged by the Deputies opposite and acknowledge their efforts to have this drug made available. This is the first time I have been made aware of a delay. I will find out this afternoon what has happened and will revert to both Deputies with the reason for the delay.