Finian McGrath (Dublin Bay North, Independent) | Oireachtas source

I do not doubt Deputy Ó Caoláin's sincerity on the issue, particularly on Spinraza as a proven drug. The Minister for Rural and Community Development, Deputy Ring and I are on the same page in that regard. The HSE is the decision-making body on the reimbursement of medicines under the Health (Pricing and Supply of Medical Goods) Act 2013. It is the HSE that will make the final decision on whether Spinraza will be reimbursed, taking into consideration the statutory criteria specified under the Act.

I commend Deputy Ó Caoláin on raising this issue. Paul, Lorraine and Grace O'Malley have a very difficult day ahead of them tomorrow in Temple Street Hospital. I wish Grace well with her operation tomorrow.

Again, there is a moral and ethical debate going on here concerning quality of life cost. Price should never be an issue when it comes to children's health. I urge common sense on this issue. I was directly involved in the campaign at the time of the Orkambi debate. We all rallied around the families affected by that. I accept that the Deputy's views are strong and sincere. I know the families are suffering and I will bring all the issues raised back to the Minister, Deputy Harris.

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