Michael Healy-Rae (Kerry, Independent) | Oireachtas source

I thank the Ceann Comhairle's office for allowing this very important issue to be raised here tonight. I have previously raised it by means of parliamentary questions but it is very important to bring the matter to the floor of the Dáil and that the Taoiseach, the Tánaiste, the Minister for Health, the Department of Health and the HSE listen because it is a very important matter. I appeal to the Government to ask that the HSE approve payment for a miracle drug that will help save the lives of two children who are very ill. I am speaking on behalf of, and with the permission of, Lorraine and Daniel Mynard and their daughter, Kate, and Shane and Stephanie Whelan and their little son, Theo. Both Kate and Theo have a very rare muscular condition. These two little children are the only two suitable recipients in this country for this drug, Zolgensma, which is used to treat spinal muscular atrophy, a genetic condition which leads to the loss of movement in the body. It is a gene therapy drug and can vastly improve these children's quality of life and lengthen their lifespans.

Authorities in Ireland have already rejected it on the basis of cost. I do not believe that we should put a price on a child's life at this time or at any time in the future. Other drugs are being administered at present which cost up to €100,000 per treatment. It is obvious that, if this once-off drug is administered, it would be a big help to these children. I must explain that time is of importance because the drug can only be administered to children under a certain body weight and two years is virtually the cut-off point. Michael Clifford wrote a very excellent article in the Irish Examinerrecently in which he highlighted these two cases. I am grateful for that because I want national prominence to be given to this case.

The treatment will help the swallowing muscles. They will be greatly enhanced and improved by the administration of this drug. The respiratory systems of the children would also be helped greatly by this drug. I know the parents would like to thank all of the medical people who have helped them on their journey with their two little children so far. I know they would particularly like to thank the management, staff and people who run Temple Street hospital for the excellent work they have done so far in helping these two little children to have a fighting chance of survival.

I know that €2 million per treatment is a lot of money but whoever said anyone, whether a member of any party or a member of none, or any politician or government, could say that a drug was too expensive to save a child's life? I do not think that is right. At the same time, I am a realist. I understand that there are no blank cheques but - my goodness - we are talking about two little babies who we want to live and who we want to have a fighting chance in this world. We want their parents, their grandparents, their brothers, sisters and cousins to have the benefit of having those young, beautiful children in their lives. I would like to hear what the Minister of State has to say on behalf of the Government.

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