Joe McHugh (Donegal North East, Fine Gael)
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I welcome the Minister of State at the Department of Health and Children, Deputy Devins, to the House. I thank him and Dr. Philip Crowley in the Department of Health and Children for their efforts in respect of this issue. Not long after I was elected, I approached the Minister of State, Deputy Devins, and in fairness he showed very good leadership. He left politics out of the issue and met with me because he felt it was an important issue. He also worked at exploring different avenues for funding the scheme to fund research for children with Duchenne muscular dystrophy.

However, I am extremely critical of the way in which the families of children with Duchenne disease have been treated. As we know, Duchenne disease involves a shorter life expectancy than muscular dystrophy. With that in mind, we are looking at children with a life expectancy of between 18 and 20 years. Two families in my constituency have been through a very long and arduous three-year campaign. They have fought tooth and nail and used their own initiative and funds to go to Sheffield in the UK to find out about the best international practice in research, new models of research and intervention which would help their children.

When the parents of one family started out, their son Liam was three years old. He is now six. They live with the expectation that he will survive until the age of 18 or 20. They feel very let down because their expectations were heightened throughout the process. They were given hope and open-ended promises in terms of getting funding for research for their children.

The second set of parents from my constituency had two children with Duchenne muscular dystrophy, one of whom is two years old while the other is seven. These parents have spent three years lobbying and campaigning and have been given the false expectation that they would get funding.

I wish to put on the record a one-line answer in correspondence dated 8 February 2008 which I received today, 14 February. The sentence was "Regarding your request for direct Irish Government funding for the trial, there is no mechanism or budget for Government funding to UK health research". That one sentence says it in very black and white terms. Why were these parents and other parents throughout Ireland not told that this was not an avenue to go down from the very beginning? Why were they not told that they would not get Irish Exchequer funding for research in the UK? This is a nonsense because we are not funding UK research. We are funding hospitals within the UK who will help the survival rates of children in this republic.

This is the crux of the argument. These parents feel let down. They were given expectations and false hope. They used their own energies and funds and are now left in a complete vacuum as to what they can do. In fairness to the Minister of State and Dr. Crowley, there are proposals within this correspondence which the parents may attempt to use but, believe me, they have tried these avenues and know that these are not the routes to go down. This is a very specific question of funding. International testing is being carried out in the UK from which these parents could benefit and which could help their children live longer. It is as simple as that. The Minister of State has been through this experience with his own family and I ask him to empathise with these people who are at a crossroads and do not know where to go. They want his help and that of the Government to allow them continue this journey and to ensure their children live beyond 18 or 20 years of age.

Jimmy Devins (Sligo-North Leitrim, Fianna Fail)
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I thank the Deputy for raising the issue which I will take on behalf of my colleague, the Minister for Health and Children, Deputy Mary Harney.

As the Deputy is aware, officials from the Department of Health and Children and myself met with representatives of Muscular Dystrophy Ireland in October of last year and discussed at some length the issue raised by the Deputy. I commend the Deputy on the dedication he has shown regarding this issue. At that meeting a presentation was made by Muscular Dystrophy Ireland on seeking funding towards a proposed trial of IV Exon skipping therapy by the MDEX consortium in the United Kingdom.

I issued a letter to the director of Muscular Dystrophy Ireland last week — I apologise to the Deputy if he received it only today but it was issued from my Department last Friday — outlining the Department's position on funding research trials into Duchenne muscular dystrophy in the UK.

I assure the Deputy that I am very aware of the situation for these families. I am aware also of their hopes regarding a proposed trial of IV Exon skipping therapy by the MDEX consortium in the UK. This trial is one of a number of related trials on different Exon skipping therapies being planned in different centres.

It is very positive that Muscular Dystrophy Ireland has secured access for Irish children to the Duchenne muscular dystrophy registry in the UK in order that they can be considered for inclusion in the first systemic trial of this treatment.

Regarding the request for direct Irish Government funding for the trial, unfortunately there is no mechanism or budget for Government funding of UK health research. I have spent some time since the meeting in October investigating the options after meeting with Muscular Dystrophy Ireland. As explained at that meeting, the consortium could apply to the Health Research Board for joint funding for the proposed trial but it would have to compete with all other proposals being received by the Health Research Board.

The Department of Health and Children cannot directly fund UK or Irish research. I assure the Deputy we have examined every possible alternative in this regard. We can only recommend that the researchers apply to the Health Research Board. I would be hopeful, however, that the much larger research funding bodies in the UK will fund this research if they are convinced of the merits of the trial.