Jimmy Devins (Sligo-North Leitrim, Fianna Fail)

I thank Deputy Blaney for sharing his time with me. At the outset, I congratulate the Minister of State, Deputy Moloney, who is doing a wonderful job in a challenging and difficult brief. I am delighted to have the opportunity to say a few words on this important motion.

Muscular dystrophy is a very disabling condition. Unlike many conditions in medicine, unfortunately, it does not have a cure. In that regard we know the fate that stares in the face of those who are unfortunate enough to have this condition.

It is difficult to estimate the number of patients who are affected by muscular dystrophy. Muscular Dystrophy Ireland informs me that it has 509 members but is aware that there are persons with the condition who are not members of the organisation.

Within that group there are 88 who suffer from Duchenne muscular dystrophy which, as the House will be aware, is a much more virulent or aggressive disease for which there is no cure to date. In that regard, the research being carried out in Ireland, the UK and across the world, is of vital importance.

Sadly, many of those with muscular dystrophy, particularly Duchenne muscular dystrophy, have a life expectancy up to the early 20s at most. This is definitely an improvement on what happened in the past but it is still a frightening thought that, unfortunately, somebody who has such a condition will be dead by their early 20s. I would urge the Health Research Board and the Department to find some mechanism whereby the research being carried out, particularly the exon skipping research in the United Kingdom, can be funded to some extent from this country. I am aware there are difficulties in getting the funding to the UK. There is a considerable amount of goodwill for the Department on this issue and I urge everyone involved to try to resolve it.

We must be cognisant of our economic situation. In this regard, the suggestions that I shall make in the few minutes remaining are designed to try to improve the lot of people with muscular dystrophy. Since the pool of people with muscular dystrophy is so small, I appeal for each to be given a medical card. If my estimates are right, we are discussing a maximum of 600 or 650 people. Many already have medical cards. From my discussions with some of the people with this condition, their families and those involved, however, I understand that the provision of a medical card to those who have none would be of great psychological and medical benefit. I request that all sufferers be granted a medical card.

Will the Minister for the Environment, Heritage and Local Government consider a mechanism whereby housing modification grants could be prioritised for people to muscular dystrophy? They need their housing adapted, as most, if not all, will be wheelchair bound by a certain point. While there are pressing financial constraints on all grants, I appeal to the Minister to consider as a matter of urgency the provision of a housing grant to the group in question. Normally, there is a time lag between when people first apply for housing grants and when they are granted. The unfortunate people under discussion do not have that time at their disposal.

We need more neurologists. I am delighted that the Minister for Health and Children has obtained the agreement of the medical consultants group in that respect. I appeal to her to make the provision of neurologists and their backup teams at various locations a priority. The people involved in the treatment of muscular dystrophy are essentially based in Dublin, but sufferers are scattered throughout the State. I make these requests in recognition of the country's financial situation.

See this speech in context