Andrew Doyle (Wicklow, Fine Gael)

I propose to share time with Deputies O'Donnell and Perry.

Duchenne muscular dystrophy is registered as a rare disease and, as such, does not affect many individuals and families. Nonetheless, those who are affected by this condition find that it consumes their lives. When couples marry and have children, they expect their children will survive them but parents of children diagnosed with this condition at the age of four or five years must face the prospect that they will survive their children.

I note from the tone of contributions by Government Deputies, particularly Deputy Scanlon, and I accept that they feel as passionately about this issue as Deputies on this side. The sole motivation of my party, in tabling an amendment, is to offer hope and do everything in our power to assist those suffering from Duchenne muscular dystrophy and their families. All we ask is that Members throw a lifeline to sufferers and their families.

We have heard about clinical trials in this field. The prognosis for boys with Duchenne muscular dystrophy is that they will not, in the main, reach their 21st birthday. I am reluctant to be so blunt but this is the fact faced by the parents of children with this condition. Clinical drug trials offer the only hope of enabling these children and their parents to enjoy family life in the manner the rest of us do. We must allow these children and families to embrace hope by supporting clinical drug trials. Lists of treatments are available setting out progress being made in this area, including in this country.

The amendment tabled by the Fine Gael Party calls on the Government to "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." This is all we ask. By taking these steps, we will allow money to flow. In January 2008, I wrote to the then Minister of State in the Department of Health and Children, Deputy Devins, who I am pleased to note is present, calling for these steps to be taken. He responded that this could be done only through the Health Research Board. Dealing with the HRB, however, is similar to seeking a local improvement scheme grant from a council in the sense that one joins the back of the queue. The board does not appear to engage in any form of prioritisation of need. While no one argues against the provision of funding for other research trials taking place in many other areas, as with everything else, time is not on the side of children with Duchenne muscular dystrophy.

The Fine Gael Party does not seek political kudos but asks Government Deputies to follow their hearts and to support the amendment.

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