Aodhán Ó Ríordáin (Labour) | Oireachtas source

I thank the Minister of State for being here. I very much appreciate it and I know she will feel strongly about the issue I am about to raise. I also appreciate that her Department is working as best it can to find a resolution to the issues I raise. I welcome in the Gallery Ms Fiona Bailey, the mother of Sam Bailey. I met the family of Grace O'Malley from Mayo last week.

Last week there was demonstration outside the Dáil, of which I think the Minister of State was aware, about the 25 children in this country who suffer from spinal muscular atrophy type 2. It called on the Government to speed up the process of making the wonder drug, as it is called, Spinraza available to these children. It is a vitally important intervention that these children greatly need. What the families are asking for is the exact timeline for negotiation between the HSE and Biogen, the manufacturer of this drug. The Minister for Health, Deputy Simon Harris, who I know is engaged in this issue and seeks a resolution of it, tweeted last week to one of the parents involved in this campaign that the issue is currently with the HSE, that there needs to be engagement between the HSE and the company, that he will make sure it happens and that he knows how important it is to families.

What the families are really asking for is clarification as to where the process is. It is understood that Biogen made an offer on 29 July and that a high-level meeting on the issue may be held in the Department tomorrow. Spinal muscular atrophy type 2 is a particularly difficult condition to live with. The families are doing their absolute best and they appreciate that there are people working in the Department who are doing their best to ensure we can come to a resolution of this issue. I know from my time as a Minister of State in that Department and from working in these Houses that no one in politics tries to be a blocker or to increase the suffering of children. The 25 children are doing well but, having spoken to their families last week and again this morning, I understand they fear facing into winter, even at this time of year. The impact winter could have on children with this condition is frightening.This drug could make all the difference. It is freely available in 20 countries in Europe, but for some reason, two do not, one of which, unfortunately, is Ireland. We know the process and campaign the Government went through to find a solution for children with cystic fibrosis in the case of Orkambi. It was much appreciated. I think it is within the Minister of State's capacity to give the families affected by this condition some hope. They want clarification of where the Government is in negotiations with the company. Can we hope and expect Spinraza to be freely available for the children in question in that they can look forward to having more complete lives and fulfilling their potential?