Denis Naughten (Roscommon-South Leitrim, Fine Gael)

I move amendment No. 1:

To delete all words after "Dáil Éireann" and substitute the following:

"noting that:

— there are currently at least 150 families affected by Duchenne Muscular Dystrophy (DMD), in Ireland today;

— DMD is the worlds leading lethal childhood genetic disease; and

— there is no cure for this disease at present resulting in an average life expectancy of late teens and early twenties;

recognising that:

— Duchenne Ireland has raised over €300,000 nationally through a vast range of fundraising events which is to be allocated to translational DMD research;

— research, led by Professor Kay Ohlendieck, National University of Ireland, Maynooth, has led to a promising new approach in the treatment of muscular dystrophy; and

— in 2008 the Joint Committee on Health and Children unanimously voted in favour of supporting funding of Duchenne Research;

calls on the Government to:

— ensure that in the context of the deteriorating economic and fiscal environment that the National Disability Strategy will be implemented in full and that funding is invested to provide the essential health and community support services for people with disabilities, including those with muscular dystrophy and DMD;

— prioritise adequate funding for muscular dystrophy and DMD Research through the Health Service Executive, and the Health Research Board, so to provide sufficient supports for sufferers but also to employ the most promising and innovative research strategies through the clinical trial process and to ensure that sufferers have access to these trials; and

— ensure there is a care and clinical trial site in Ireland that is registered with the Treat-NMD clinical trials co-ordination centre and also to ensure that the new DMD standards of care are fully implemented in this country."

Duchenne muscular dystrophy, DMD, is one of the most common fatal genetic disorders diagnosed in early childhood. It causes the loss of muscle function and independence. DMD has no cure and is 100% fatal at present. However, this does not have to be the case. Research is under way to find a therapy that will help to delay the progression of the disease and provide the potential to find a cure. Research is striving to improve the treatment, quality of life and long-term outlook for all individuals affected by muscular dystrophy, specifically DMD.

Time is not on the side of these boys. The families are looking for support from the Government and through Duchenne Ireland they have created a fund of €300,000 to promote this research. The families have put their money upfront and what they now seek from the Government is hope. The severity of this disease means the boys and their families desperately seek even the smallest positive research result but the fact is that research is becoming more positive. However, the research is the only hope these boys have for a future.

To cure muscular dystrophy and DMD, the conditions have to be stopped or at least alleviated. Research tries to focus on gene and drug therapy - gene therapy examines the repairing of the damaged gene or replacing it by other means and drug therapy examines blocking or slowing down the muscle degeneration without influencing the damaged gene itself. Both approaches are vital and while important progress has been made during the past number of years, to date neither gene nor drug therapy has developed so far that it could provide a cure for the Duchenne boys. Progress has been made with drug therapy, which can now slow down the degeneration of the muscles. No one wants to raise false hopes but research is the only way forward and the very least that we can provide is hope and the potential for successful treatment and a future cure for this disease.

It is an indication of the lack of support that 148 of the people with muscular dystrophy in this county are based in Dublin, with only eight in my county of Roscommon. Many of them have moved to Dublin because they are not able to avail of basic services in their own homes and communities. It is a damning indictment of the health system that people have to leave their families and homes and travel to Dublin to avail of a service. However, this is not available to the Duchenne boys because many of them die before they reach their twenties. It is important that we have better management of muscular dystrophy as this has been shown to increase the life expectancy of all those diagnosed with this debilitating disease.

I urge the Minister of State to reconsider the policy decision taken on funding research outside the country. We will never have the resources here to go it alone on research into some of these very rare diseases. Surely we should be working with our colleagues in the UK and throughout Europe. I commend the Fine Gael amendment to the House.

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