Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I join the Chairman and Deputy Dowds in welcoming our visitors. I ask them to give us an outline of the symptoms of sickle cell disease. How does it manifest itself and what impact does it have on the lives of the carrier-sufferer? Despite having looked through various papers in advance of this meeting and listened to the witnesses' contributions, I do not have a sufficient understanding of the extent of the impact on the lives of those who are diagnosed with sickle cell disease and thalassaemia.

I have two questions arising from Dr. McMahon's presentation, the first point aside. In the tables that Dr. McMahon presented, the second indicated a significant reduction in the number of new sickle cell disease patients presenting at Our Lady's Children's Hospital in Crumlin. In 2003, the figure was over 115 and this worked its way down almost consistently until last year, 2013, when the figure was only 22. That suggests a certain message but I wonder is it really the case at all? It may not be. The graph probably gives a confusing message to the uninformed or less informed and needs a little elaboration. I do not think it is telling us what it might really be saying.

The other point concerns bone marrow transplants. Dr. McMahon referred to two children with severe sickle cell disease who had sibling bone marrow transplantation and were cured of the disease. That is wonderful news but it is such a small number and there is only one other case pending. There are limited resources here in Dublin and I presume that is mirrored across the island of Ireland. More and more at meetings of this committee we are looking at the potential for developing North-South co-operation in order to better secure health services on the island of Ireland rather than people having to leave the shores of this country and go to the neighbouring island or beyond. Is there any comparable project under way north of the Border? I presume there are equally increasing numbers of people presenting because of the newcomer population within the North of Ireland. How is it being dealt with there? Is there a basis for co-operation to allow for the introduction of the bone marrow transplant procedure here, on the island of Ireland, which is more affordable in the first instance and much more considerate of the individual child and his or her family?

Dr. Conneally made reference to adult needs and I noted in one of the papers I read that there is a proposal to consider St. James' Hospital in the context of the new relationship between it and the signalled new national children's hospital on that campus. I can follow the logic of what Dr. Conneally has indicated. Can she tell us exactly where that is - is it an aspiration or is there a firm proposal in place? Is there any commitment at this point in time to realise such an adult service? I am also obliged to ask - because I do not know - if sickle cell disease or thalassaemia impacts in terms of one's life expectancy. In terms of the adult cohort, I ask the witnesses to give us a profile or an indicator of what we are talking about in real terms.

Finally, I welcome Lora, whose paper I found very interesting. She has made a number of recommendations from the perspective of the affected community, which is very welcome. There are a number of what I would regard as fairly straight forward recommendations that should not overly challenge the system. Sadly, the system at the present time is ever more difficult to get good results from, mostly because of the more difficult economic circumstances in which we all live. I can appreciate the case being made regarding access to medical cards. However, other than the fact that there may be a cure as a result of a bone marrow transplant, I presume in all other situations we are talking only about treatment and control. It would appear - from my limited exposure and knowledge - to be a long-term illness and there is a long-term illness card available in this jurisdiction. I know how difficult it is to get medical cards at the present time and the very restricted basis on which medical cards are currently being approved. It may already be the case that because of their economic circumstances, people with sickle cell disease will qualify for a medical card in any event. However, based on the actual condition, the greater likelihood is that a long-term illness card would be the more appropriate way to proceed with that particular argument. I only offer that as an observation. There is so much more in what the witnesses have brought to our attention this morning. I thank each of them for their contributions.