Dara Calleary (Mayo, Fianna Fail) | Oireachtas source

I wish to raise the issue of spinal muscular atrophy, SMA. In doing so I welcome the fact that we have just had a meeting hosted by Deputy Lisa Chambers with families from across the country who are affected by this condition. We heard fantastic testimony from Grace and Cillian, who are children with this condition. SMA is a group of inherited diseases of the motor nerves that cause very debilitating muscle weaknesses and wasting. It is life-threatening, rare and the leading genetic cause of death in infants. We heard at the meeting from a parent who was told by their paediatrician when given the diagnosis that it was "as bad as it gets".

There are 25 children in this country with this condition. It presents them with a number of burdens. They are wheelchair-bound, suffer muscle recession and considerable pain, and the day-to-day exercise of their lives is virtually impossible when it comes to handwriting and other small things. They are fantastic, however. We have just met some of them and there are more of them outside the gates. It would give one a lift to meet them and to see how determined they are as youngsters to live their lives in spite of the challenges and to see how determined their families are to give them as good a life as they can.

There is now hope for children with this condition. This hope is called Spinraza, which is the first treatment of its kind in the world. There is significant evidence from countries across the world and from clinical trials that Spinraza can give this hope because it is changing children's lives significantly, slowing down the muscle wastage and in many cases allowing muscle strengthening, which allows them to live much more easily. Spinraza is making an enormous difference to these children and their families in more than 20 countries across Europe.

Here, however, it is still not available under the refund scheme, despite the fact that on 22 June last the Minister, Deputy Harris, announced that Ireland would join Belgium, the Netherlands, Luxembourg and Austria in the Beneluxa initiative, which aims to secure affordable and timely availability of medicinal products. When the Minister made that announcement, he said, "I want the new newest and most innovative medicines to be available in a timely manner to all our citizens." So say all of us, but the first initiative that this new group announced was to make Spinraza available in every country in that alliance except in Ireland. The hopes of those 25 children and their families that were raised on 22 June by the announcement of our joining this alliance are therefore now cruelly dashed and their frustration and anger is palpable.

Why must these children and their families wait when this initiative was held up by the Tánaiste's Government and by the Minister, Deputy Harris, as the answer to our drug pricing challenges? Why are these 25 children not getting treatment, not getting access to Spinraza like the children in Belgium, the Netherlands, Luxembourg and Austria? We need an answer urgently because these children do not have time.

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