Thursday the 21st was the day the Dail turned to a debate on Duchenne Muscular Dystrophy. Fine Fail introduced their motion and it was carried 64 to 58 votes against a counter motion raised by Fine Gael and Labour.
The government motion did not address any of the items Duchenne Ireland have been raising over the past 4 years namely Adoption of Standards of care for Duchenne, registration of Ireland as a clinical trial site for Duchenne and adequate research funding for Duchenne, despite two votes in favour of such funding by the committee for health and children in the last few years.
The following counter motion was filed by Fine Gael TDs Joe McHugh and Andrew Doyle on behalf of Duchenne Ireland:
“That Dáil Éireann:
Noting that:
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there are currently at least 150 families affected by Duchenne Muscular Dystrophy (DMD), in Ireland today;
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DMD is the worlds leading lethal childhood genetic disease;
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there is no cure for this disease at present resulting in an average life expectancy of late teens and early twenties;
Recognising that:
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Duchenne Ireland has raised over €300,000 nationally through a vast range of fundraising events which is to be allocated to translational DMD research;
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research, led by Professor Kay Ohlendieck, National University of Ireland Maynooth, has led to a promising new approach in the treatment of Muscular Dystrophy;
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in 2008 the Joint Oireachtas Committee on Health and Children unanimously voted in favour of supporting funding of Duchenne Research;
Calls on the Government:
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to ensure that in the context of the deteriorating economic and fiscal environment that the National Disability Strategy will be implemented in full and that funding is invested to provide the essential health and community support services for people with disabilities, including those with Muscular Dystrophy and DMD;
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to prioritise adequate funding for Muscular Dystrophy and DMD Research through the Health Service Executive, and the Health Research Board, so to provide sufficient supports for sufferers but also to employ the most promising and innovative research strategies through the clinical trial process and to ensure that sufferers have access to these trials;
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to ensure there is a Care and Clinical Trial site in Ireland that is registered with the Treat-NMD clinical trials coordination centre and also to ensure that the new DMD Standards of care are fully implemented in this country.
— Joe McHugh, Denis Naughten, Andrew Doyle, James Reilly, Kieran O'Donnell, Dan Neville.
[19 November, 2008]
Duchenne Ireland would like to thank the following TDs and Minister who spoke during the 90 minute debate in Dail Eireann last Thursday (21st May) Minister Moloney, James Reilly, Dan Neville, Denis Naughten, Jan O'Sullivan, Caoimhghin O'Caolain, Eamon Scanlan, Andrew Doyle, John Perry, Pat Breen, Niall Blaney, Jimmy Devins, Paul Connaughton, Joe McHugh and John Cregan.
Although the vote did not go our way we hope that Minister Moloney will carry through with the commitments he made to Duchenne Ireland on Thursday "Last November the issue became clear to me and the Tánaiste asked me to talk about meeting with the group and I intend, further to this debate, to meet with members of that group. I accept that request. I am not meeting them for the sake of it. That is not the position. It is a meeting to bring clarity"
We also would like to thank Muscular Dystrophy Ireland for using the event to promote their important agenda. It is essential that the momentum gathered is maintained
The full text of the Dail Debate can be found at the following link: www.kildarestreet.com/debates/?id=2009-05-21.145.0
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