Fine Gael Deputy Joe McHugh has today (Wednesday) slammed the Government for its refusal to fund UK clinical trials into Duchenne Muscular Dystrophy (DMD), the fatal genetic disorder that affects 150 Irish 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 according to Deputy McHugh.
"The contribution from the Irish Government to these trials was agreed at £1.5 million but now the Government has refused to provide it on the basis that it cannot fund health research in the UK.
"Duchenne Muscular Dystrophy is a genetic condition that causes premature death by the age of 18 to 22. There is no effective treatment or cure for the condition which mainly occurs in boys.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.
"The UK trials are known as the 'Exon skipping trials' and similar trials have been carried out in Holland, with very successful outcomes. These trials offer fresh hope to parents who had previously been told that nothing could be done to help their children. The total amount needed for these trials is only €1.5 million - a small amount in the overall context of the Exchequer - and families in my area have already raised €175,000 through charity events.
"Time is not on the side of these children, as evidenced by a letter I received from one parent last week who stated that time and money are the only things standing in the way of her son receiving the treatment he badly needs. It is inconceivable that the Government cannot, or will not, find a way to help children such as these and fund the trials.
"I, along with my Fine Gael colleagues, have raised this issue on several occasions but have been ignored or 'fobbed off' by the Health Minister and Finance Minister. This week I wrote to the EU Health Commissioner to urge her to intervene and find funding as it is clear that the Irish Government's response has been one of inaction and ignorance. The Government would not even find a mechanism to fund the charity being established by the families, Duchenne Ireland instead of directly funding the UK trials and instead provided €9,000 of National Lottery funding to Muscular Dystrophy information day.
"To say this response is an insult is a gross understatement when so many lives hang in the balance."
Original Press Release: http://www.finegael.ie/News/index.cfm/type/details/pkey/653/nkey/34991