Brian Hayes (Dublin South West, Fine Gael)
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Question 84: To ask the Minister for Health and Children the way she proposes to overcome difficulties that Irish Duchenne muscular dystrophy sufferers incur when travelling to Britain for care and clinical trials; her views on the Irish British Duchenne muscular dystrophy registry; and if she will make a statement on the matter. [39360/09]

John Moloney (Laois-Offaly, Fianna Fail)
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Following the Dáil debate regarding muscular dystrophy earlier this year, I met with Duchenne Ireland and discussed a range of issues, including research, clinical trials, the registry and standards of care for the treatment of boys with Duchenne muscular dystrophy. The issues raised by Duchenne Ireland are under active deliberation and receiving detailed consideration at the highest levels in the Department. However, I must point out that while the Department is working through the various issues raised by Duchenne Ireland, it may not be possible to come to a full resolution of all the issues that are of concern to it.

The Duchenne muscular dystrophy registry is a database for patients diagnosed with Duchenne or Becker's muscular dystrophy. It is hosted by Action Duchenne in the UK and is promoted by Muscular Dystrophy Ireland and Duchenne Ireland. It is very positive that access for Irish children to the registry has been secured so that they can be considered for inclusion in trials. While the use of registries as a tool to identify patients for clinical trials is gathering momentum, the Duchenne muscular dystrophy registry is a voluntary database and, as such, it is a matter for each individual to include themselves on the registry.

I am not aware of any requests made to the Health Service Executive for assistance to fund Irish Duchenne muscular dystrophy patients travelling abroad for care and treatment in the UK.

Andrew Doyle (Wicklow, Fine Gael)
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The point is that the children going to the UK for trials encounter many challenges and this is not acceptable on an ongoing basis. There are three key areas: research, a proper register and standards of care. Duchenne Ireland contends that only a fraction of boys with the condition are on the register. What is a needed is a dedicated neurologist to drive the updating of the register and to establish the standards. The Lancet journal will next January or February list a register of standards for all countries with regard to the research and trials that have been carried out. This register is what will form opinion. GlaxoSmithKline has already signed a deal to put a product on the market.

If we do not have a proper register for the children of this country, they will miss out. It is estimated there is a core of 150 to 200 boys with the condition. I ask the Minister in the first instance to dedicate a neurologist from within the current core staff of the HSE to drive this forward.

John Moloney (Laois-Offaly, Fianna Fail)
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I have met the group and intend to meet it again in the next few weeks. I have taken the request on board. At this point, I cannot say I can deliver the Deputy's request but I accept that because the register is voluntary, people are disinclined to use it, which sends us a message. If we are to give the register some value, I would hope to be able accede to the request in the near future. However, I want to meet the group before I give that commitment.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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We addressed muscular dystrophy in the House in May of this year, including an address of Duchenne muscular dystrophy. A number of specific areas were identified as being in need of address. What steps have been taken to progress the needs of people suffering from Duchenne muscular dystrophy and muscular dystrophy generally? The shortage of neurologists has been highlighted in part, as well as the need for enhanced support for neurology in the national centre, which is Beaumont Hospital, the need for enhanced Government support for Duchenne muscular dystrophy research and, lastly, the need for greater support for muscular dystrophy sufferers, particularly given the outlay they must expend annually in regard to the hire of ventilators to assist their breathing, which is expensive and is not covered by medical cards. Is consideration being given to extend medical card entitlement to all those suffering from muscular dystrophy, including Duchenne muscular dystrophy?

John Moloney (Laois-Offaly, Fianna Fail)
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First, the extension of medical card cover is not a consideration. To reaffirm the point raised by Deputy Doyle, I reiterate the importance of a register that would give value. The issue of a neurologist specifically designated for that purpose is one I am considering. I would hope to meet Deputies Doyle, Ó Caoláin and their colleagues again in the coming weeks.

The point concerning clinical trials arose at the meeting with the representatives. I pointed out that we have no identifiable lead clinician or investigator willing or able to co-ordinate the protocols of a trial. Without trying to hide behind that response, the reality is that until such time as we can identify somebody who would take up that role, we are stuck in regard to dealing with the clinical side in Ireland. As Members will be aware, at the last meeting I gave certain commitments by way of dealing with the need to upgrade and add importance to the register.

Jan O'Sullivan (Limerick East, Labour)
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We all want to see progress on this issue and I welcome the fact the Minister of State has engaged with it. The condition affects a relatively small number of people but it would make a huge difference to their lives if we can have a proper register, a dedicated clinician and get them directly linked to the trials. To achieve this, we need a commitment to be shown on behalf of the Government that we are fully engaged in the process. We must come back to the Minister of State on this issue. Perhaps it is up to us to table questions to him as it is important we would have follow-up in this regard.

James Reilly (Dublin North, Fine Gael)
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I accept the Minister of State's bona fides in this regard. However, the question is when action will be taken on behalf of those who suffer this life-threatening illness. Time is not on their side. Many of the people I met at the beginning of last year have lost their sons. How many more will lose sons before we take action? I know we are in a financial crisis but we need to deal with this issue.

I want to mention Deputy Joe McHugh, who is involved in this issue and would be present today if he were not on paternity leave. On a lighter note, perhaps the Minister of State would join me in congratulating Joe and Olwyn on the arrival of young Darragh Thomas McHugh.

To come back to the main question, this is a heart-rending issue. I would like to support the Minister of State and the Minister in trying to find the funds to make this possible for these children.

John Moloney (Laois-Offaly, Fianna Fail)
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I meant to mention Deputy McHugh earlier as he was part of the meeting with the Minister, Deputy Doyle and myself some time ago. I gave the commitment that I would hold another meeting before the end of this term. I hope that meeting will not be just for the sake of checking where we were at the last meeting. It is to deal with the issue of the register and, more importantly, to find whether we can secure a lead investigator.

I understand 155 boys travel to the UK. I offer my sympathy to them, but more than just doing that, I will try to deal with the matter.

I add my congratulations to Deputies McHugh and Enright. Indeed, I sent a card to my constituency colleague, Deputy Enright, on the good news.

Andrew Doyle (Wicklow, Fine Gael)
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The EU competent authority in this area is TREAT-NMD, which is based in Newcastle. It is willing to assist in this regard but it has not yet been engaged with. Will the Minister of State make contact with TREAT-NMD to request its assistance?

John Moloney (Laois-Offaly, Fianna Fail)
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I will.