Fine Gael National Press Office Press Release

Govt refuses to fund life-saving muscular dystrophy trials for Irish children - McHugh

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."
Ends

Original Press Release: http://www.finegael.ie/News/index.cfm/type/details/pkey/653/nkey/34991

On April 9th 2008, Duchene Ireland and Muscular Dystrophy Ireland will convene the 2008 National Muscular Dystrophy Annual Lobby Day in Buswells Hotel on Kildare Street, Dublin 2, next to the Dáil (Irish Parliament).

Members of Duchenne Ireland and Muscular Dystrophy Ireland (MDI) will come from all corners of Ireland to discuss matters of critical importance to Muscular Dystrophy sufferers. Top of the agenda for Duchenne Ireland will be the funding support for the "Exon Skipping" trials in the UK.

 Nearly three years have passed since Duchenne Ireland parents met with MDI and Government officials to try and secure funding for the "Exon Skipping" trials in the UK and still no money has been sanctioned to support this life saving clinical trial, that is the best hope for DMD boys and girls that has ever been seen.

The interesting twist to this Lobby day, is that the TDs are on the side of the boys and girls, with many of them voicing their support for the lobby day and booking their place well in advance of the day. So remember 12 noon in Buswells Hotel - Be their and voice your support to save these kids lives. And Remember - It's Free Admission !

Duchenne Muscular Dystrophy is 100% fatal at present - This does not have to be the case - support Duchenne Ireland and Muscular Dystrophy Ireland now and tell your TDs to support the Exon Skipping Trials in the UK.

Make the difference - Voice your support:

April 9th 2008 - Buswells Hotel - Kildare Street, Dublin 2, @ 12 noon.

Directions to Buswells - 9th April 2008 @ 12 Noon

The weather held up as members of the different organisations made calls to have the current attempt at a two tiered health system to be brought to a halt and to give equal health care to all, irrespective of their income.

Dr. Orla Hardyman and Dr. John Crown led the attacks on the government on behalf of the Irish medical consultants for not funding the health service properly. Dr. Hardyman stating that many aspects of the health service were good and should not be continually criticised but needed more funding.

A concerned member of the public pleads with Dr. Orla Hardyman to view her personal letters related to her personal health matters.  

The Crowd moves towards the stage to hear the speakers outside "Buswells" hotel, the location for the Annual Duchenne Muscular Dystrophy Lobby day to be held on April 9th 2008. 

On that day parents of children with Duchenne Muscular Dystrophy will meet with TDs from around Ireland to get their support to persuade the Government to back the Exon Skipping Trials for DMD currently in clinical trials in the UK. These trials are supported by group of professionals known as the MDEX Consortium, who are driving hard to bring translational research to the fore in finding therapies for this, the cruelest of diseases that impacts 1 in 3,500 boys and sometimes also girls.

These trials if proven successful will provide a major increase in life expectancy for children with Duchenne Muscular Dystrophy. 

Join us and lend your support on April 9th @ 12pm in Buswells Hotel.....