Dara Calleary (Mayo, Fianna Fail) | Oireachtas source

There is nothing like an election to concentrate the minds in a panicky Government. In that context, I suppose, timing is everything. In real life, time is everything, particularly for the 25 families whose children are suffering from spinal muscular atrophy, SMA. I have spoken about this on many occasions in the Dáil. This week there were some substantial developments, although unfortunately none of them occurred here. Every day counts for these families and every sufferer of SMA. It has been medically proven in virtually every country in Europe bar two - one of which is Ireland - that Spinraza is a drug that gives time and opportunity to those who suffer from this awful condition. Before the drug existed, they had no such opportunities but Spinraza has proven to be a miracle drug in every sense of the word.

I first raised this matter on 20 September, which is now eight months ago. At the time, the Tánaiste sympathised with the children and families, and he may have met them subsequently. He said this was a priority but nothing has happened. I raised the issue again on 13 December, which is five months ago, and on 28 February, which is three months ago. Deputies John Curran, Stephen Donnelly, Lisa Chambers and other Deputies from all sides of the House, including Deputy Ó Caoláin, have raised the topic consistently because timing is everything. I do not lay out those dates to seek some sort of credit but rather to demonstrate the importance of time and what eight months, five months, three months or even three days would have meant to these sufferers if they had access to the drug.

The families have been told time and again that this is a priority and the matter will be dealt with but time and again they have been let down. They were let down last Tuesday as they had been told the matter would be discussed and decided on 14 May but that decision has been kicked down the road. They were let down again on Wednesday when they found out that the National Health Service, NHS, in the UK has approved an access programme for Spinraza and those who need it in the NHS will have access to it. The 25 families here, as well as the adults who need Spinraza, will not get it. When I mention 25 families it may take away from the fact that these are real people. They are Grace, Cillian, Sam and many other children and adults who are going through hell. They are suffering from the condition and the families are dealing with that trauma but now they must deal with this issue as well. I implore the Tánaiste to look at Facebook when he gets the chance to see the testimony recorded on Tuesday by Grace O'Malley when her family got the news that the decision on the drug had been kicked down the road again.

This is enormously frustrating for all of us as there is cross-party agreement on the matter. I know the Government wants to make this happen but we are impotent because some body that does not have to answer to anyone is playing with these families' futures. We in the political system must take charge. Will the Tánaiste please update us on the position with Spinraza? Why, once again, has the decision been postponed? Why do Irish children have to be deprived of this when children across Europe can access the drug?

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