I want to revert to an issue I raised with the Taoiseach in this House on a number of occasions last year and I regret that, due to a lack of progress, I have to refer to it again. It is the issue of the 25 children who are suffering with spinal muscular atrophy who want access to a drug, Spinraza. If they were in many other European countries, they would have that access. When I raised the matter before, the Taoiseach and the Minister of State, Deputy Jim Daly, indicated there is an ongoing evaluation by the HSE. There had been hope before Christmas that progress would be made and a resolution to this problem found but, unfortunately, that has not happened and the condition of these children is deteriorating. While I support and acknowledge there must be due process, due process cannot go on endlessly. Time has moved on. A solution needs to be found so these children can get access to this drug.

Regrettably, I still do not have a final update because the HSE is still doing the due diligence that has to be done. The background to this is that the cost is extremely high and the HSE has a moral obligation to ensure we do not refuse other people other drugs. There is a limited, finite budget so we have to get that aspect right. It is worth noting that our nearest neighbour, the UK, has not okayed this medicine under the NHS system because it is too expensive. We are hopeful and positive on this but we have to do the due diligence. A decision is due shortly, although I do not want to put a date on it. I know the Deputy's concern and know he is very consistent on this. I am getting daily updates from the HSE but, while a decision is due shortly, I cannot name the date because when one is negotiating, one cannot tie one hand behind the other. We have to be fair to everybody. The Deputy can rest assured that, from a political point of view, and given the efforts of the Deputy and others, this will not be left to dwindle.