Today (Thursday) in Dáil Éireann, Fine Gael Deputies Andrew Doyle and Joe McHugh, have called on the Government to find a way around regulations which prevent the Government providing funding clinical trials taking place in the UK. Deputies Doyle and McHugh said that 150 Irish families have children suffering from Duchenne Muscular Dystrophy whose best hope of survival lies in participation in UK clinical trials, which the Government is refusing to fund.
Deputy Andrew Doyle said:
"Duchenne Muscular Dystrophy (DMD) is a genetic condition that causes premature death by the age of 18-22. There is no effective treatment or cure for the condition which mainly occurs in boys. 150 families in Ireland are affected and their only hope lies in participation in UK clinical trials, known as Exon Skipping Trials. I understand that the contribution from Ireland to participate in the trial was agreed at £1.5 million but the Government is refusing to provide the funding on the basis that it cannot fund health research in the UK. With at least 150 young lives hanging in the balance it is incumbent on the Government to open their minds and find a way to provide the necessary funding."
Deputy Joe McHugh said:
"Two families in my constituency who have three boys affected by DMD between them have been fundraising for the past month and have raised €70,000. Time is not on the side of these families as premature death is looming for their children. It is unthinkable that the Government is unable to find a way to help fund their participation in the research which they say is their only hope. Fine Gael is suggesting that there must be a mechanism for the Government to fund the charity being established by the families, Duchenne Ireland, if they are unable to directly fund the UK trials."
Both Deputies condemned the Government's response in the Dáil today which represented a shirking of responsibility for sick Irish children. The Government said it was pleased to have provided €9,000 of National Lottery funding to Muscular Dystrophy information day but the Fine Gael Deputies described this as an insulting response in light of the plight of the families affected.