THE GOVERNMENT has been accused of refusing to part-finance pioneering muscular dystrophy trials in the UK that would benefit children here.
Fine Gael TD for Donegal North East Joe McHugh has criticised the Government for not contributing €1.5 million towards the costs of clinical studies into Duchenne Muscular Dystrophy (DMD) that are being conducted by leading college professors in Britain.
Two years ago it was indicated by the Government that the money would be given, Mr McHugh said yesterday. The cost of the British research is about £20 million.
The fatal genetic disorder affects up to 150 Irish children.
Mr McHugh said that two families in Donegal, who have boys suffering from the condition, had so far managed to raise €175,000 locally by selling €10 tickets to help subsidise the study.
The gene therapy clinical trials began late last year. They centre on molecular patch therapy which has the potential to give boys with DMD the chance to preserve their muscle function and live into old age.
"The Government's attitude that it cannot fund UK research and that it will not find a way around regulations governing this is a slap in the face to parents of the 150 Irish children suffering with DMD, particularly since no such trials exist in Ireland."
A spokeswoman for the Department of Health and Children said it did not fund medical research, "so there is no suggestion of a refusal by the department to contribute towards the research".
She said the Health Research Board and the Medical Research Charities Group developed a new funding scheme in 2006 to improve patient health through research. Those two groups issued co-funding for two projects with Muscular Dystrophy Ireland, one of which related to the British trials, she said.
Muscular Dystrophy Ireland last night said it had contributed €127,000 to the research.
DMD is an inherited muscle disease that causes the weakening and degeneration of the skeletal muscles that control voluntary movement. It mainly affects boys and is the result of mutations in the gene that regulates dystrophin, a protein that maintains the integrity of muscle fibre.
Mr McHugh said: "Duchenne Muscular Dystrophy causes premature death by the age of 18 to 22. Time is not on the side of these children.
"The best hope for these children lies in participating in the UK trials but the Fianna Fáil-led Government refuses to provide the small amount of funding necessary and refuses to find its way around regulations it says prevents the funding being allocated."