Brian Ó Domhnaill (Fianna Fail)

Cuirim fáilte roimh an Aire go dtí an Teach chun éisteacht leis an díospóireacht thábhachtach seo agus chun na focla adúirt sé a chur i láthair an Tí. Curim fáilte roimh an méid atá ráite ag an Aire ar an ábhar fíor-thábhachtach seo ar ghalair nach bhfuil comh coitianta agus a bhéadh galair eile, cé go gcuireann iad isteach ar chuid mhór daoine. I welcome what the Minister has just said and we will be supporting tonight's Private Members' motion. I welcome that the national clinical programme for rare diseases which the Minister said will be put in train. It is something that needs to be implemented given the figures the Minister and other Members have outlined this evening. At least 160,000 Irish people have what is categorised as a rare disease. According to evidence, one third of these, approximately 50,000 patients, will die before they reach the age of five, which is an alarming figure.

Conditions classified as rare diseases include well known conditions such as cystic fibrosis and muscular dystrophy. However, there are other conditions such as lupus which are classified as rare diseases. Those conditions affect many young people in particular and we need a national clinical plan incorporating a joined-up approach from the Department of Health and the HSE with each of the respective charitable organisations representing people with those illnesses, including the Irish Lupus Support Group, Spina Bifida Hydrocephalus Ireland and others.

In Ireland, we are pretty good at diagnosing illnesses, but the challenge begins after the diagnosis and some people have serious difficulties when it comes to the treatment of a rare disease. There is often no concentration of expertise, as the Minister has outlined. For example, until a few years ago, cystic fibrosis was treated in various locations throughout the country but now the treatment tends to be more specialised and centralised, which is to the benefit of patients. Ireland has the highest rate of cystic fibrosis in the world and we do not have a very good track record with the disease. For example, despite being the national referral centre for people with cystic fibrosis, St. Vincent's University Hospital in Dublin, still has no specialist CF unit. However, the contracts for that building have been signed and I understand it is due to be completed by April of this year. I ask the Minister to clarify that point in his remarks later on.

Some young people in the prime of their lives who are affected by rare diseases - neurological or other diseases - are finding it extremely difficult to continue in employment. However, the disease from which they suffer is not recognised as one that qualifies under the long-term illness scheme. The Minister knows this needs to be addressed because in July 2010 he raised the issue on the floor of Dáil Éireann and called for the then Government to ensure that diseases such as muscular dystrophy, Parkinson's disease, acute leukaemia, certain forms of cancer, asthma, congestive cardiac failure, Crohn's disease, lupus and Huntington's disease should all be recognised - some are but others are not. There are other diseases - I have only selected a few.

Let us consider an individual who is working and who is then diagnosed with a rare illness and who is then unable to get additional benefits. The cost of obtaining care may mean the person must leave employment. That person may be unable to fulfil their life to the greatest extent possible. The long-term illness scheme should be radically overhauled immediately. I call on the Minister to fulfil the claims he made when he was in opposition. Often, but not exclusively, young people are not entitled to access the long-term illness scheme. I have met people from the Irish Lupus Support Group and spina bifida organisations. Earlier this week I opened the regional office for MS Ireland in Donegal. I met patients there and the uniform word from them is to the effect that they need recognition at that level. The major plans on the major issues must be addressed and the Minister is working towards this. However, at a lower level these people are finding it difficult to cope financially. These illnesses should be recognised for the purposes of the scheme. I recognise that the Minister agrees with me and I call on him to try to ensure something is done about it in Cabinet.