Simon Coveney (Cork South Central, Fine Gael) | Oireachtas source

Like the Deputy, I want to provide certainty to the families feeling the impact of this. I met one of those families and its members were incredibly dignified and very frustrated by the fact that the child in question cannot access a medicine that could make a major difference in the quality of her life.

The Deputy knows how the process works and it is not politicians who make the decisions in recommending drugs or the prices at which they are supported by the State. We have had an assessment process that has been ongoing for some time and there have been consultations with the drugs company, as the rules of the assessment process determine. I had an expectation that a decision would be made this week, as did others, and my understanding is it may now take longer. I have spoken repeatedly about this to the Minister for Health, Deputy Harris, after questions have been asked here and after speaking to one of the families concerned. He is also frustrated and wants to bring a positive clarity to families.

As the Deputy knows, there is an obligation on the HSE to ensure expenditure of this scale is approved on the back of strong evidence of clinical and cost-effectiveness. I accept that we have created timelines time and again whereby families have built an expectation around a decision and that decision has not been finalised. I assure the Deputy that the concerns and frustrations of the families are fully understood by the Government and the Department of Health. We certainly want to try to finalise decisions and get a positive outcome for the families concerned. However, we cannot change a position because of the frustration around a process, and we cannot move from a HSE structure making appropriate decisions on availability of drugs such as Spinraza and their cost to essentially having politicians making those decisions in a political and potentially inappropriate way.

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