Jan O'Sullivan (Limerick East, Labour)

I am glad we had an opportunity to table the amendment and to make the points we wish to make.

I welcome this debate because it is important we have an opportunity in the parliamentary Chamber to raise this important issue and tease out what are the obstacles for the families who have to cope with this devastating illness. While we proposed an amendment to the Government's motion, it is welcome that certain progress has been made and I acknowledge that. The purpose of this debate is to make progress and for this reason our amendment contains specific proposals and I want to use the time I have to address them.

This is a very severe progressive muscle-wasting disease. It is devastating news when it comes to the families concerned. As has been stated, certain families have more than one boy affected and approximately one in 3,500 boys in the population is affected by this disease. The only hope is that we can participate in international trials to make whatever progress can be made in co-operation with people in a variety of countries throughout the world. That is why we made specific points in our amendment.

The Minister said that funding is available through the Health Research Board in conjunction with the Medical Research Charities Group and that there is a system of tendering for this funding. He mentioned a sum of €3 million. That sum goes to the Health Research Board but a much smaller sum is available for tendering in the Medical Research Charities Group. I understand that approximately 29 charities are involved in this process. The actual amount of money available, therefore, for Duchenne muscular dystrophy is relatively small and is not the amount required to participate fully in the international trials, be it the Exon Skipping trial, the molecular patch research to which the Minister referred or other research. The Exon Skipping trial has attracted the involvement of families in Ireland and it appears to be having considerable success. It is the trial in which Irish families wish to be involved. However, as the amount of money is so small it is not possible for Ireland to participate fully. Duchenne Ireland has raised €300,000 through its efforts but it needs the Government to provide adequate funding for this international research.

It is also necessary to have a clinical trial centre in Ireland. If the funding is ring-fenced for Duchenne muscular dystrophy and if a clinical centre is established in Ireland - a large number of countries have already established these centres - this country can participate fully in the trials and the international effort in this area. With such a rare disease we must co-operate internationally to make progress. The Irish group is already in direct contact with international bodies that represent families with Duchenne muscular dystrophy. The group is sending information on boys in Ireland to the UK charity and to the National Centre for Medical Genetics at Our Lady's Hospital for Sick Children in Crumlin, so there is a data gathering process taking place to feed into this research.

I accept that the Minister of State, Deputy John Moloney, listens to the comments from the Opposition. While there is a certain amount of effort on the part of the Government and a certain amount of money is being provided, it is not enough for Ireland to participate fully in the international studies and for Irish boys to have the opportunity to take part in those studies. We must go the extra distance in terms of both funding and establishing a centre in this country.

The other point made by the Labour Party is that Ireland should adopt international standards of care for Duchenne muscular dystrophy in conjunction with other countries and the National Centre for Medical Genetics. The US Centre for Disease Control is drafting those standards in conjunction with other countries at present. We must participate in this process so Ireland will be an equal participant in the international effort being made.

These are the three elements that are required in addition to what is being done already in this country. I hope this debate, with participation from all sides of the House, will enable us to make the required progress for the families concerned. All parties have noted that the Joint Committee on Health and Children voted unanimously in 2008 in favour of supporting funding of research into Duchenne muscular dystrophy, so there is already all-party agreement that this should be done.

The main points I intended to make relate specifically to Duchenne muscular dystrophy and the actions that must be taken in that regard. However, the motion also deals with muscular dystrophy in general. Some points should be made about what is generally required in that area. I attended the briefings held by Muscular Dystrophy Ireland for Members of the Oireachtas both this year and last year in Buswells Hotel. A number of points were made by the organisation, most of which have been outlined by Deputy Reilly. A few of these points should be emphasised. One is the need for an adequate neurology service in Ireland, not just for muscular dystrophy but to deal with a variety of neurological conditions. However, people with muscular dystrophy have a particular need for a proper national neurological service. There is also a need for physiotherapy services and other therapies. Many sufferers are confined to wheelchairs and have significant needs across the spectrum of health professionals which must be met.

Muscular Dystrophy Ireland also pointed to the need for an adequate personal assistant service for those who can stay in their homes. They can live a full live if there is an adequate personal assistant service. I spoke to some of the people concerned and their families and they said there is a shortage of some of the supports they require which makes it difficult for them to live at home. With any of these illnesses it is better if the person with the illness can live at home, but it also saves money for the taxpayer in terms of not having to keep people in much more expensive institutions.

Families of sufferers of Duchenne muscular dystrophy also made the point that if they can participate in research and improve the life of the individual boy, it is also cost effective. Recent statements from both the Government and Opposition parties have pointed to the importance of research and Ireland being a strong centre for research across the spectrum, which is a wider issue. However, with regard to research into genetic disorders, particularly Duchenne muscular dystrophy, if we can move the process forward today, we will contribute to the broader policy of Ireland taking a leading role in research, on which all parties are agreed, and being fully integrated into international research across the board. If we can take this step for the boys with Duchenne muscular dystrophy and their families, we can make a real difference to their lives. I hope progress will be made following this debate.

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