Duchenne Muscular Dystrophy: Motion.

Thursday, 21 May 2009

Dáil Eireann Debate
Vol. 682 No. 7

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Minister of State at the Department of Health and Children (Deputy John Moloney): Information on John Moloney  Zoom on John Moloney  I move:

[248]I would like to deal with the involvement of the Health Research Board, HRB and current and future research funding and to give clarity regarding the medical research charities group. I do not want to give a cold response, as I am well aware of the huge concerns, fears and worries of parents, families and friends of children suffering from Duchenne muscular dystrophy. I hope to bring clarity and to confirm that the Government continues to believe in the need for further funding and research and to make it clear that we are always open to meet representatives of advocacy groups, as we have done in the past.

I am pleased to take this opportunity to address the issues raised in the motion before the House. I assure Deputies that the Government is aware of the situation of families with children suffering from Duchenne muscular dystrophy. While there are no guarantees with trialling new approaches to muscular dystrophy, I understand the hopes of families for a medical advancement in this field. I hope later to bring clarity to the fact that funding is recognised for trials abroad.

The HRB is the statutory agency with responsibility for funding health research in Ireland with a view to improving health and health outcomes. Research funding is causing concern but it is allocated to projects, people, infrastructure and networks across the entire spectrum of health research from biomedical to clinical, including health services and health systems research. I have been advised that, in line with international best practice, all HRB funding is awarded based on the principles of open competition and international peer review.

Each proposal is assessed against specific explicit criteria. In order to achieve this, the HRB issues calls for applications at various times of the year in certain areas. The funding and the associated contract are normally awarded to a research institution in Ireland for a team of researchers to conduct the project.

Since 2006, the Department of Health and Children has provided funding of €3 million to the HRB to allow it to fund research projects jointly with the medical research charities group, MRCG. This was in recognition of the fact that some research charities, especially those investigating rare disorders, wish to fund projects that are led predominantly and perhaps even fully outside of Ireland. The HRB developed the guidelines for this scheme with international efforts in mind. Member charities can submit research projects to the HRB for joint funding where the research project is endorsed as a priority by the member charity and where there are justifiable reasons for the work being led outside this country. In this jointly funded scheme, the HRB awards its funding to the member charity and the charity manages the research contract with the research team.

The HRB has worked closely with the medical research charities group to achieve two things: first, to increase the amount of funding available to support research projects; and, second, to develop a research management capacity among the research charities.

The HRB and board of the MRCG announce a call for applications and then invite charities to solicit research proposals. The charities conduct an initial peer review and afterwards proposals are sent forward to the HRB for joint funding. An expert panel is then convened, composed predominantly of international experts. The expert panel makes recommendations and, if approved by the board of the HRB, co-funding is issued to the nominating charity.

To date, three calls have been issued jointly between the HRB and the medical research charities group. A total of 25 members of the latter group and 44 individual projects have secured joint funding under this scheme so far. The HRB has co-funded two projects with Muscular Dystrophy Ireland. One of the projects is based at NUI Maynooth and the other is a project in Imperial College, London.

[249]In 2008, another call for proposals was issued by the HRB and the MRCG. I understand that charities are currently considering which applications and how many to forward for consideration. They have until mid-June to do this. The HRB and MRCG will convene an expert panel to review these projects towards the end of June and the recommendations from that panel will be put for approval to the board of the HRB shortly thereafter. This new round of the scheme will provide funding for clearly defined research projects for up to 36 months.

The HRB has been supportive of Muscular Dystrophy Ireland. Earlier this year, officials from the HRB met with Mr. Joe Mooney, the CEO of Muscular Dystrophy Ireland, to talk about this current call for applications. I understand Mr. Mooney was assured that there would be no maximum amount of HRB co-funding that could be allocated internationally. The assessment criteria that will be used by the expert panel are as follows: excellent and high quality science; innovation; relevance and impact of the research on the disease; and expertise and research environment.

I understand that both parties had a good discussion about developing and progressing a research strategy for the charity, with short and longer-term goals. This included a discussion of additional funding schemes that the charity might think of targeting in future.

The HRB has informed my Department of the up-to-date position on the project regarding the treatment of Duchenne muscular dystrophy. The project was led by Professor Dominic Wells of Imperial College, London. The total cost of the project was €100,000 and the co-funding from HRB was €50,000. The research has been completed and a report has been requested by the HRB.

As the Deputies will be aware, Duchenne muscular dystrophy is a fatal muscle wasting disease of boys. It is first noticed at three to five years. The boys are in wheelchairs by ten and, unfortunately, without expert medical attention they will die in their late teens. Recent developments in medical care have improved the quantity and quality of life with young men living into their mid-20s. Duchenne muscular dystrophy is caused by defects in the gene for a critical protein which is vital to muscle cells. Without this protein the muscle is easily damaged and this results in muscle wasting. A small genetic drug called a molecular patch has been developed that can convert some Duchenne muscular dystrophy genetic defects into a milder type of muscular dystrophy and this should prevent much of the muscle wasting. In order to use this molecular patch it must first be proved to be safe. This is checked by testing in animals to show the molecular patch is not damaging to breathing, the heart, the brain or the body generally. The project at Imperial College London aims to perform these necessary tests so that, if it is safe, the molecular patch can be considered for use to treat boys with Duchenne muscular dystrophy. The research at NUI Maynooth will give greater insight into the condition of muscular dystrophy. Hopefully, one day, it could result in a new treatment that would make an enormous difference to the quality of life of those with muscular dystrophy.

I would like to take this opportunity to acknowledge the work of Muscular Dystrophy Ireland. I have had the pleasure of meeting the CEO and other representatives from the organisation and we have discussed a number of issues affecting their members. The key aim of MDI is to provide support and information to people with muscular dystrophy and their families. The organisation provides support services, such as family support, respite, youth activities and transport. It also organises summer camps for members. MDI also liaises with other service providers, when required, to access the best services for members.

Muscular Dystrophy Ireland is also an active member of other groups, including the European Alliance of Neuromuscular Disorders Associations and the European Rare Disorders Organisation. Similar to the Government’s national disability strategy, MDI supports and promotes independent living for people with a disability. MDI supports advocating services to [250]enable people with neuromuscular conditions to participate fully in society and live a life of their own choosing. As this debate shows, MDI also supports and funds research into neuromuscular conditions.

As regards the issues of funding and services raised in the motion, the Government remains committed to the national disability strategy and doing all that we possibly can to give persons with disabilities the services and supports they need and deserve. The needs of people with a disability, such as muscular dystrophy, was the motivation for the development of the national disability strategy.

Deputy James Reilly: Information on Dr James Reilly  Zoom on Dr James Reilly  I wish to share time, if I may, with Deputies Denis Naughten and Dan Neville.

An Ceann Comhairle: Information on John O'Donoghue  Zoom on John O'Donoghue  Is that agreed? Agreed.

Deputy James Reilly: Information on Dr James Reilly  Zoom on Dr James Reilly  In the short time afforded to me, it will not be possible to touch on all the issues that arise concerning muscular dystrophy and, in particular, Duchenne muscular dystrophy. Suffice it to say, as the Minister of State has pointed out, that these boys have a very short life span. It is a matter of great trauma for their families and all those who are involved with them. Ten boys are born every year with this condition. It is very difficult once the boys are wheelchair bound for them to travel. It is particularly onerous for them to have to travel abroad for research purposes. We need an Irish arm of these trials so the Government should make the money available to do so. We must get around whatever issues there are concerning the difficulties with funding trials that do not necessarily originate here.

The most important message that needs to emanate from this debate is that people with Duchenne muscular dystrophy have multiple needs. From their point of view, the earlier intervention takes place the better. It is really scandalous that we have so few neurologists in this country, generally, and that the two neurological service units available for people with muscular dystrophy are both in Dublin, at Beaumont and Temple Street. Therefore, everybody concerned must travel to Dublin from Donegal, Cork and elsewhere to avail of these services.

We do not have enough genetic testing facilities or sufficient respiratory cardiac care monitoring for the children, which could make a huge difference to their quality of life. If they do not have a medical card, they must pay the first €90 per month towards the cost of breathing machines which aid ventilation. That represents further hardship for them amounting to an annual sum of €1,080.

Some 97 members of Muscular Dystrophy Ireland receive no physiotherapy nationwide and there are 40 who cannot access an occupational therapist. That number has increased from 20 in 2008. The last paragraph of the Minister of State’s speech rings a little hollow when one considers the facts of the matter. It states:

What Muscular Dystrophy Ireland would like to see is more funding for the multidisciplinary team at Beaumont Hospital to support the neurologist there; the paediatric neurology team to be made permanent and boosted; more consultant geneticists; funding for the respiratory team at the Children’s University Hospital, Temple Street and funding for respiratory and cardiac services, as I mentioned. Will the Minister of State support the recommendation of Muscular Dystrophy Ireland and the Disability Federation of Ireland that the Government introduce a [251]cost of disability payment of €40 per week for people with disabilities in receipt of means tested social welfare payments?

It is recognised nationally and internationally that people with disabilities incur many extra but ordinary costs such as food, heating and clothing as a result of their disability. This matter was identified by the Commission on the Status of People with Disabilities and the National Economic and Social Forum and they both recommended the payment. This is something real and tangible that could arise from this debate.

Research on exon skipping needs to be supported to ensure that it runs to its conclusion and, potentially, to the development of new therapy. Above all, I implore the Minister of State to ensure we give hope to our citizens who suffer with this illness and their families that there could be light at the end of the tunnel and that we are prepared to invest in their future by investing in this research.

Deputy Dan Neville: Information on Dan Neville  Zoom on Dan Neville  I reiterate what Deputy Reilly said on early intervention and multidisciplinary services at Beaumont Hospital for those suffering from muscular dystrophy. It is important to put on the record what muscular dystrophy is because many people are unaware of this reasonably rare condition and the life expectancy of people who suffer with it. Muscular dystrophy is the collective name for a range of neuromuscular conditions which are characterised by progressive weakening and wasting of the muscles. It can affect adults and children; some forms arise at birth or in childhood and others may not manifest themselves until later in life.

Each type of muscular dystrophy arises from a different genetic mutation or deletion which is inherited from one or both parents or is due to a spontaneous mutation. This means that many families have more than one member with the condition. There is no cure for it but there have been huge advances in increasing the quality of life for people with the condition and researchers are working hard to develop new treatments. It is very important that the State, the Department and the HSE ensure the best quality of treatment and support and that the Department of Social and Family Affairs and other Departments support those who suffer from the condition and ensure their quality of life is as good as possible.

The issues which affect those people with the condition are diverse and include access to medical services such as neurological assessment; genetic testing and counselling; respiratory and cardiac monitoring and treatment; community services including physiotherapy, occupational therapy, aids and appliances; accessible housing and transport; access to education, training and employment and research funding. I urge the Minister of State and the Government to ensure that these services are made available to all who suffer from this very serious and debilitating condition.

Deputy Denis Naughten: Information on Denis Naughten  Zoom on Denis Naughten  I move amendment No. 1:

[252]

Duchenne muscular dystrophy, DMD, is one of the most common fatal genetic disorders diagnosed in early childhood. It causes the loss of muscle function and independence. DMD has no cure and is 100% fatal at present. However, this does not have to be the case. Research is under way to find a therapy that will help to delay the progression of the disease and provide the potential to find a cure. Research is striving to improve the treatment, quality of life and long-term outlook for all individuals affected by muscular dystrophy, specifically DMD.

Time is not on the side of these boys. The families are looking for support from the Government and through Duchenne Ireland they have created a fund of €300,000 to promote this research. The families have put their money upfront and what they now seek from the Government is hope. The severity of this disease means the boys and their families desperately seek even the smallest positive research result but the fact is that research is becoming more positive. However, the research is the only hope these boys have for a future.

To cure muscular dystrophy and DMD, the conditions have to be stopped or at least alleviated. Research tries to focus on gene and drug therapy — gene therapy examines the repairing of the damaged gene or replacing it by other means and drug therapy examines blocking or slowing down the muscle degeneration without influencing the damaged gene itself. Both approaches are vital and while important progress has been made during the past number of years, to date neither gene nor drug therapy has developed so far that it could provide a cure for the Duchenne boys. Progress has been made with drug therapy, which can now slow down the degeneration of the muscles. No one wants to raise false hopes but research is the only way forward and the very least that we can provide is hope and the potential for successful treatment and a future cure for this disease.

[253]It is an indication of the lack of support that 148 of the people with muscular dystrophy in this country are based in Dublin, with only eight in my county of Roscommon. Many of them have moved to Dublin because they are not able to avail of basic services in their own homes and communities. It is a damning indictment of the health system that people have to leave their families and homes and travel to Dublin to avail of a service. However, this is not available to the Duchenne boys because many of them die before they reach their twenties. It is important that we have better management of muscular dystrophy as this has been shown to increase the life expectancy of all those diagnosed with this debilitating disease.

I urge the Minister of State to reconsider the policy decision taken on funding research outside the country. We will never have the resources here to go it alone on research into some of these very rare diseases. Surely we should be working with our colleagues in the UK and throughout Europe. I commend the Fine Gael amendment to the House.

Deputy Jan O’Sullivan: Information on Jan O'Sullivan  Zoom on Jan O'Sullivan  I wish to move amendment No. 2 to the motion in the name of the Labour Party if it is appropriate.

An Ceann Comhairle: Information on John O'Donoghue  Zoom on John O'Donoghue  Unfortunately Deputy O’Sullivan cannot formally move the amendment because there can be only one amendment before the House. It is a technical matter.

Deputy Jan O’Sullivan: Information on Jan O'Sullivan  Zoom on Jan O'Sullivan  I am glad we had an opportunity to table the amendment and to make the points we wish to make.

I welcome this debate because it is important we have an opportunity in the parliamentary Chamber to raise this important issue and tease out what are the obstacles for the families who have to cope with this devastating illness. While we proposed an amendment to the Government’s motion, it is welcome that certain progress has been made and I acknowledge that. The purpose of this debate is to make progress and for this reason our amendment contains specific proposals and I want to use the time I have to address them.

This is a very severe progressive muscle-wasting disease. It is devastating news when it comes to the families concerned. As has been stated, certain families have more than one boy affected and approximately one in 3,500 boys in the population is affected by this disease. The only hope is that we can participate in international trials to make whatever progress can be made in co-operation with people in a variety of countries throughout the world. That is why we made specific points in our amendment.

The Minister said that funding is available through the Health Research Board in conjunction with the Medical Research Charities Group and that there is a system of tendering for this funding. He mentioned a sum of €3 million. That sum goes to the Health Research Board but a much smaller sum is available for tendering in the Medical Research Charities Group. I understand that approximately 29 charities are involved in this process. The actual amount of money available, therefore, for Duchenne muscular dystrophy is relatively small and is not the amount required to participate fully in the international trials, be it the exon skipping trial, the molecular patch research to which the Minister referred or other research. The exon skipping trial has attracted the involvement of families in Ireland and it appears to be having considerable success. It is the trial in which Irish families wish to be involved. However, as the amount of money is so small it is not possible for Ireland to participate fully. Duchenne Ireland has raised €300,000 through its efforts but it needs the Government to provide adequate funding for this international research.

It is also necessary to have a clinical trial centre in Ireland. If the funding is ring-fenced for Duchenne muscular dystrophy and if a clinical centre is established in Ireland — a large number of countries have already established these centres — this country can participate fully in the [254]trials and the international effort in this area. With such a rare disease we must co-operate internationally to make progress. The Irish group is already in direct contact with international bodies that represent families with Duchenne muscular dystrophy. The group is sending information on boys in Ireland to the UK charity and to the National Centre for Medical Genetics at Our Lady’s Hospital for Sick Children in Crumlin, so there is a data gathering process taking place to feed into this research.

I accept that the Minister of State, Deputy John Moloney, listens to the comments from the Opposition. While there is a certain amount of effort on the part of the Government and a certain amount of money is being provided, it is not enough for Ireland to participate fully in the international studies and for Irish boys to have the opportunity to take part in those studies. We must go the extra distance in terms of both funding and establishing a centre in this country.

The other point made by the Labour Party is that Ireland should adopt international standards of care for Duchenne muscular dystrophy in conjunction with other countries and the National Centre for Medical Genetics. The US Centre for Disease Control is drafting those standards in conjunction with other countries at present. We must participate in this process so Ireland will be an equal participant in the international effort being made.

These are the three elements that are required in addition to what is being done already in this country. I hope this debate, with participation from all sides of the House, will enable us to make the required progress for the families concerned. All parties have noted that the Joint Committee on Health and Children voted unanimously in 2008 in favour of supporting funding of research into Duchenne muscular dystrophy, so there is already all-party agreement that this should be done.

The main points I intended to make relate specifically to Duchenne muscular dystrophy and the actions that must be taken in that regard. However, the motion also deals with muscular dystrophy in general. Some points should be made about what is generally required in that area. I attended the briefings held by Muscular Dystrophy Ireland for Members of the Oireachtas both this year and last year in Buswells Hotel. A number of points were made by the organisation, most of which have been outlined by Deputy Reilly. A few of these points should be emphasised. One is the need for an adequate neurology service in Ireland, not just for muscular dystrophy but to deal with a variety of neurological conditions. However, people with muscular dystrophy have a particular need for a proper national neurological service. There is also a need for physiotherapy services and other therapies. Many sufferers are confined to wheelchairs and have significant needs across the spectrum of health professionals which must be met.

Muscular Dystrophy Ireland also pointed to the need for an adequate personal assistant service for those who can stay in their homes. They can live a full live if there is an adequate personal assistant service. I spoke to some of the people concerned and their families and they said there is a shortage of some of the supports they require which makes it difficult for them to live at home. With any of these illnesses it is better if the person with the illness can live at home, but it also saves money for the taxpayer in terms of not having to keep people in much more expensive institutions.

Families of sufferers of Duchenne muscular dystrophy also made the point that if they can participate in research and improve the life of the individual boy, it is also cost effective. Recent statements from both the Government and Opposition parties have pointed to the importance of research and Ireland being a strong centre for research across the spectrum, which is a wider issue. However, with regard to research into genetic disorders, particularly Duchenne muscular dystrophy, if we can move the process forward today, we will contribute to the broader policy [255]of Ireland taking a leading role in research, on which all parties are agreed, and being fully integrated into international research across the board. If we can take this step for the boys with Duchenne muscular dystrophy and their families, we can make a real difference to their lives. I hope progress will be made following this debate.

Deputy Caoimhghín Ó Caoláin: Information on Caoimhghín Ó Caoláin  Zoom on Caoimhghín Ó Caoláin  I welcome this debate and the opportunity to highlight the condition of muscular dystrophy, including Duchenne muscular dystrophy, DMD, and the needs of people with this condition and their families. It is unfortunate that the Dáil cannot speak with one voice on this issue. While the motion put down by the Minister of State, Deputy John Moloney, sets out some of the key facts, it is narrow in scope, self-congratulatory in tone and fails to identify outstanding needs of muscular dystrophy sufferers and the obligations on Government to meet those needs. For that reason Sinn Féin Deputies support the amendments put down by the Labour Party and Fine Gael Members.

There are two broad areas of need identified — enhanced Government support for DMD research and the development of services to people with muscular dystrophy in general. I have previously raised in the House the shortage of neurologists in our health system and the acute need for enhanced support for neurology in the national centre, which is Beaumont Hospital. Muscular Dystrophy Ireland points out that there are currently two muscular dystrophy clinics for people with the condition, a clinic for adults in Beaumont Hospital Dublin and one for children in the Central Remedial Clinic, Dublin. This means people must travel from all over the country to Dublin to access services. Adults come to Beaumont Hospital to meet the neurologist but there is no multidisciplinary team to co-ordinate all aspects of care, including respiratory, cardiac, dietary, occupational therapy and so forth. Travelling to and fromDublin causes additional physical, emotional and financial stress for the person with muscular dystrophy and their families.

People affected by muscular dystrophy receive genetic testing and counselling from the National Centre for Medical Genetics, NCMG. However, the NCMG is still not funded to provide a nationwide genetic testing service. The NCMG has four consultants for the State’s population of more than 4.2 million whereas in Belfast, there are six consultants for the Six Counties’ population of 1.7 million. Monitoring the breathing and heart function of people with muscular dystrophy is essential in maintaining quality and, in some cases, length of life. However, there is no co-ordinated approach to care and those requiring access to the service usually have to travel to Dublin.

People with muscular dystrophy who have breathing difficulties must hire ventilators to assist them. Those without a medical card are obliged to pay the first €100 per month of the cost of this facility under the drugs payment scheme in order to stay alive. This equates to an annual cost of €1,200 which, in many cases, must be paid from a relatively low net income. Breathing machines improve not only the quality of life of muscular dystrophy patients, but also their life expectancy. The cost of using such a device should not be a prohibitive burden. Therefore, medical cards should be available to all persons with muscular dystrophy.

These people are undoubtedly suffering as a consequence of Government health cuts. There are currently 97 members of Muscular Dystrophy Ireland who are receiving no physiotherapy. Forty cannot access an occupational therapist, an increase from 20 last year. There is also a major problem in terms of access to community services including physiotherapy and occupational therapy. In addition, waiting times for essential aids and appliances are too long, up to a year in some case. There are 61 Muscular Dystrophy Ireland members waiting for the equipment they require, an increase from 42 in 2008.

Respite is essential for people with muscular dystrophy and for their carers. People with muscular dystrophy generally require in-home as opposed to residential respite care. Muscular [256]Dystrophy Ireland provides short-term respite but its limited funding means it cannot provide support to all who need it. Additional funding is necessary for the provision of longer-term respite care through other agencies. People with muscular dystrophy have a great need for personal assistance in order to access education and employment and to engage in day-to-day living, but many cannot access such services. Currently, 50 members of Muscular Dystrophy Ireland who require a personal assistant have no hours. A further 53 members have been allocated a personal assistant but clearly require more hours, an increase from 50 in 2008. Muscular Dystrophy Ireland indicates that 88 of its members will require a personal assistant in the next five years. Children and young people with muscular dystrophy attending school will require a special needs assistant, SNA, as their condition progresses. There are currently 67children with muscular dystrophy using SNAs in school, an increase from 50 in 2008. Over the next five years, 39 more children will require the service.

Muscular Dystrophy Ireland identifies various provisions which are urgently required. Funding must be provided to set up a multidisciplinary team for the adults’ muscle clinic in Beaumont Hospital to support the consultant neurologist there. The consultant paediatric neurologist needs permanent and adequate funding in order to recruit a research clinician to assist with medical audits and management of the clinics, as well as support with research. We are now entering a time when clinical trials are developing. This position has been advertised but is not fully funded. More consultant geneticists are required. There are currently fewer in this State than in the Six Counties. This leads to longer waiting lists to access genetic testing and counselling services.

Muscular Dystrophy Ireland has also indicated that the respiratory team at the Children’s University Hospital,Temple Street, requires funding to ensure all children with muscular dystrophy are monitored and treated for respiratory problems as soon as it is required. Funding for respiratory and cardiac services is essential as these are making a great difference to the quality of life of persons with muscular dystrophy. The cost of breathing machines should be covered for those who require them. More physiotherapists and occupational therapists must be recruited to ensure people with muscular dystrophy can access them as they need them on an ongoing basis.

The personal assistant service is vastly underfunded. Some 91,000 personal assistant hours per year are required immediately for people with muscular dystrophy who are currently receiving no service. Moreover, provision must be made for the 160,160 hours per year that will be required in the next five years. The long-standing demand for the introduction of a cost of disability payment — for which I and others in this House have argued repeatedly, particularly in our pre-budget submissions over the last decade — is of particular relevance to people with muscular dystrophy given the many additional costs they face. It is our collective responsibility as elected representatives to ensure this funding is allocated in order to provide the essential back-up and support that is so urgently required.

Deputy Eamon Scanlon: Information on Eamon Scanlon  Zoom on Eamon Scanlon  I am pleased to have an opportunity to speak on this important issue. Last month, I met with representatives of Muscular Dystrophy Ireland who held an information session in Buswells Hotel. Although I had some awareness of the issues as a member of my family suffers from Duchenne muscular dystrophy, I was shocked and saddened by what I learned. We must ensure there is greater awareness of this debilitating illness.

Muscular dystrophy is the collective name for a range of neuromuscular conditions which sees those affected suffer from progressive weakening and wasting of the muscles. It can affect both adults and children, with some forms of the condition arising at birth or in childhood and others not manifesting themselves until later in life. Muscular dystrophy arises from a genetic [257]mutation and people can carry the defective gene without realising it. This gene is inherited from one or both parents in most instances, which means there may be more than one member with the condition in a particular family.

There is no cure for muscular dystrophy. However, I am informed by Muscular Dystrophy Ireland, which does great work in this area, that there have been major advances in increasing the quality of life for people with the condition. Furthermore, scientists throughout the world are working hard to develop new treatments. Treatments that can improve the quality of life for sufferers include physiotherapy, occupational therapy and surgical intervention. Along with ensuring greater awareness and understanding of the condition, we must support those suffering from it as best we can.

There has been some progress in this area. Therapy services for adults with muscular dystrophy are generally delivered through primary care teams or community therapy services. The numbers of therapy staff employed in primary and continuing community care settings has increased significantly. In December 2007, there were 638 physiotherapy staff and 789 occupational therapy staff. By the end of 2008, those staff numbers had increased to 670 and 796, respectively.

Therapy services for children with muscular dystrophy can be delivered through specialist disability providers or through primary and community care services. The Government is committed to delivering primary care in a local setting and it is my hope that those with muscular dystrophy will benefit from this investment. Furthermore, resources have been allocated to increase the level of multidisciplinary supports available to children with disabilities in the context of the implementation of the Disability Act 2005 and the Education for Persons with Special Educational Needs Act 2004.

Duchenne muscular dystrophy usually affects children between the ages of two and six and has a major impact on their life expectancy. Duchenne muscular dystrophy eventually affects all voluntary muscles as well as the heart and breathing muscles. Survival is rare beyond the early 30s. It is a worst nightmare for any parent to learn that his or her child is suffering from a debilitating and incurable illness. Muscular Dystrophy Ireland has indicated that 88 of its members are suffering from Duchenne muscular dystrophy. In the past ten years, 59 boys and young men with Duchenne muscular dystrophy have died as a result of their condition. It is important that Deputies have been given an opportunity to discuss what is a nightmare scenario for many parents. For this reason, I commend Deputies McHugh and Doyle on tabling the motion.

According to its mission statement, the objectives of Duchenne Ireland are to raise awareness of Duchenne muscular dystrophy at local, national and government level and to raise funds to go directly to researchers and clinicians who offer the best chance of developing improved therapies that will benefit this generation of sufferers. The organisation also works towards achieving an infrastructure which is on a par with best international practice and aims to fund translational research for Duchenne muscular dystrophy which will move towards the clinic within a defined timeline. It encourages applicants to have in place a clear path to the clinic if work is successful, in other words, to have a plan for success.

Duchenne Ireland has set the following immediate goals: to raise funds aimed at translational research into Duchenne muscular dystrophy and associated grant calls to ensure the money is best used in a timely manner; to lobby the Government to play its part in driving research forward for Duchenne muscular dystrophy; to inform parents about the therapies and standards of care available for those with the condition; to raise awareness of Duchenne muscular dystrophy at local, national and Government level; and to increase Ireland’s ability to play a key part in Duchenne research through industry, patient and Government co-operation.

[258]Muscular Dystrophy Ireland also does terrific work in this area, providing information and support to people with neuromuscular conditions and their families through a range of support services. It offers a lifeline for sufferers and their families and helps empower sufferers and supports them to lead independent lives. Last year, the organisation received €3 million in Government funding. Funding should be made available to both Muscular Dystrophy Ireland and Duchenne Ireland to ensure young people with these conditions have a chance in life. Given the significant benefits research funding could deliver, I implore the Minister to ensure funds are made available for clinical trials in the area of Duchenne muscular dystrophy. While I am aware that resources are scarce, those suffering from this disease should be supported in all possible ways.

Deputy Andrew Doyle: Information on Andrew Doyle  Zoom on Andrew Doyle  I propose to share time with Deputies O’Donnell and Perry.

Duchenne muscular dystrophy is registered as a rare disease and, as such, does not affect many individuals and families. Nonetheless, those who are affected by this condition find that it consumes their lives. When couples marry and have children, they expect their children will survive them but parents of children diagnosed with this condition at the age of four or five years must face the prospect that they will survive their children.

I note from the tone of contributions by Government Deputies, particularly Deputy Scanlon, and I accept that they feel as passionately about this issue as Deputies on this side. The sole motivation of my party, in tabling an amendment, is to offer hope and do everything in our power to assist those suffering from Duchenne muscular dystrophy and their families. All we ask is that Members throw a lifeline to sufferers and their families.

We have heard about clinical trials in this field. The prognosis for boys with Duchenne muscular dystrophy is that they will not, in the main, reach their 21st birthday. I am reluctant to be so blunt but this is the fact faced by the parents of children with this condition. Clinical drug trials offer the only hope of enabling these children and their parents to enjoy family life in the manner the rest of us do. We must allow these children and families to embrace hope by supporting clinical drug trials. Lists of treatments are available setting out progress being made in this area, including in this country.

The amendment tabled by the Fine Gael Party calls on the Government to “ensure there is a care and clinical trial site in Ireland that is registered with the Treat-NMD clinical trials co-ordination centre and also to ensure that the new DMD standards of care are fully implemented in this country.” This is all we ask. By taking these steps, we will allow money to flow. In January 2008, I wrote to the then Minister of State in the Department of Health and Children, Deputy Devins, who I am pleased to note is present, calling for these steps to be taken. He responded that this could be done only through the Health Research Board. Dealing with the HRB, however, is similar to seeking a local improvement scheme grant from a council in the sense that one joins the back of the queue. The board does not appear to engage in any form of prioritisation of need. While no one argues against the provision of funding for other research trials taking place in many other areas, as with everything else, time is not on the side of children with Duchenne muscular dystrophy.

The Fine Gael Party does not seek political kudos but asks Government Deputies to follow their hearts and to support the amendment.

Deputy John Perry: Information on John Perry  Zoom on John Perry  I thank Deputies McHugh and Doyle for drafting this important motion. Duchenne muscular dystrophy is a degenerative muscular disease which causes progressive weakening and wasting of the muscles. It can affect adults and children. Some forms of the [259]condition arise at birth or in childhood, while others may not manifest until later in life. The disease results in reduced life expectancy.

A number of Irish families are directly affected by Duchenne muscular dystrophy. A boy in my constituency, whose father and grandmother are in the Visitors Gallery, has recently been diagnosed with the disease. Having a child diagnosed with such a serious illness is one of the most difficult and sad experiences any family can endure. Like any parent, I ask myself how and why this can happen to any child but specifically the child in question. I also ask myself what can be done to fix the problem and whether the child can be cured by medical science. Beyond this, there is faith and the hope of a miracle cure.

  12 o’clock

Regrettably, there is no cure for Duchenne muscular dystrophy at present. The parents of children with the condition look to current research in the hope that an interim therapy will be found to help delay the progression of the disease, while science searches for an understanding of and cure for the condition. I strongly urge the Minister to make the maximum possible financial provision for services to Duchenne muscular dystrophy patients and their families. Community services, such as physiotherapy and occupational therapy, aids and appliances, such as wheelchairs and orthopaedic footwear, accessible housing and transport, and access to education, training and employment are critical to the quality of life of patients and their families. In addition, easy access to medical services, such as neurological assessment, respiratory and cardiac monitoring, and treatment are also critical. These services form the basis for a worthwhile quality of life for patients at home and in the local community. They are also an important support for the parents and family members of patients with the disease.

Better management of Duchenne muscular dystrophy has been shown to increase average life expectancy. While these developments greatly add to quality of life, they cannot prevent or stop the progression of the condition. For this reason, there is a real need for ongoing research. Promising research projects are in place in other countries. It is important in this area of research, as in other areas, that we invest in more co-operative research with other countries. Such co-operation will ensure Irish patients with Duchenne muscular dystrophy will be an integral part of current clinical trials of new drugs and Irish medical personnel are at the leading edge of new treatments and therapies.

I ask the Minister to ensure there are no obstacles to funding from Ireland being used in projects that are led predominantly or perhaps fully outside Ireland. We need to be fully plugged in to the leading research projects investigating rare disorders such as Duchenne muscular dystrophy. As we cannot fund this research alone, let us set the standard in enthusiastic co-operation with other leading research teams.

As a long-time advocate of better co-operation with the United States, I strongly suggest that we should have at least one co-operative research project with the leading researchers there.

While the removal of obstacles to funds from Ireland being used in projects outside Ireland is important, the real challenge is to increase the funding into DMD research. In this connection, I would ask the Minister to support this project.

Deputy Pat Breen: Information on Pat Breen  Zoom on Pat Breen  In Clare there are 21 children registered with muscular dystrophy. In the few minutes available to me let me tell the story of my cousin and her four children. Their two boys had muscular dystrophy and the two girls have it as well.

The two boys are now dead, but let me tell of their lifestyle. They died at the age of 20. Between the ages of four and five they were diagnosed with muscular dystrophy. They were diagnosed when they started walking on their toes because they could not put their heels on [260]the ground. They never learned to ride a tricycle like other children or have a normal life, and they fell very easily.

I knew the two children well. At the age of eight, they became wheelchair-bound. The family had to provide electric wheelchairs because this gave them mobility and, most important, independence. At the age of 14, both children had operations for curvature of the spine. This operation lifts the spine off the lungs and gives the children more breathing capacity. They were under constant care.

Parents have a tough job with children with muscular dystrophy. They act as carers, nurses and physiotherapists because physiotherapy must be provided on a daily basis. They become dietitians because the children’s diets must be watched carefully. They also act as teachers.

Both of these boys coped well at school and were treated very inclusively. Both had got to university before they died. As they got older, their mother told me, they learned more about their disorder from the Internet. Of course, it gets harder because such children know they do not have long to live. At night time they need constant monitoring because they cannot move in bed and the parents must be awake at night to move them at regular times, otherwise they get bed sores. They are also prone to chest infections, and to heart difficulties and pneumonia. This is a very serious problem affecting families and my heart goes out to the families with children affected with muscular dystrophy.

As I stated, in the case of my cousin’s family, the two boys died. The two girls are carriers but they lead healthy lives. Once when on holiday abroad with his parents one of the boys got mucous in his throat and almost choked. There was an advanced paramedic in place and the lad recovered. He was just 19 or 20 years old. However, one of things he said to his mother was that if that happened again, he did not want to go on.

This is just one story but it is the story of many other parents, some of whom are in the Gallery. I urge the Government to adopt international standards in this area. We must be part of international research as we do not have independent capacity in this matter.

Deputy Niall Blaney: Information on Niall Blaney  Zoom on Niall Blaney  I thank the Government and the Chief Whip for allowing time here today to discuss the Government motion.

An Leas-Cheann Comhairle: Information on Brendan Howlin  Zoom on Brendan Howlin  Is the Deputy sharing with Deputy Devins?

Deputy Niall Blaney: Information on Niall Blaney  Zoom on Niall Blaney  Yes, with the agreement of the House. It is only right to acknowledge the Government giving the time to discuss the motion here today. It shows the seriousness with which it takes this issue.

At the outset, I acknowledge the work of Muscular Dystrophy Ireland and that of its CEO, Mr. Joe Mooney. It is also only right to acknowledge that much work is done behind the scenes by a guy named Mr. Jimmy Mooney and the Lafferty family, who live close to him, on Duchenne muscular dystrophy. They have been fighting a long battle trying to get funding for this worthy cause.

This issue, no different from any other disability issue, is close to the Tánaiste’s heart. She has been working on it for quite some time. Even this morning she had meetings with the Minister of State, Deputy Moloney and the Minister, Deputy Harney, and work is ongoing on the matter. In Donegal, Mr. Charlie McConlogue is very much keeping the Tánaiste’s and my attention on the matter on a regular basis. They are working on protocols and trying to alleviate difficulties that existed in getting funding to this worthy cause. I am aware that the Tánaiste attended meetings with those involved in the Imperial College, London and look forward to a positive outcome.

[261]As has been outlined by Deputies here this morning, decisions will be made on funding in June. I take comfort from the fact that guarantees have been given to MDI that there is no upper limit to the co-funding that could be allocated internationally. The assessment criteria that will be used by the panel were outlined to MDI as well: it must be excellent high-quality science; it must be innovative; it must have a relevance and impact on the disease; and the expertise must be from a research environment. There was a fairly thorough meeting between the HRB and Mr. Mooney. I am confident that the Ministers involved, and the Tánaiste, are doing all in their power to ensure that adequate funding is provided for this worthy cause and work will continue in that regard.

Deputy Jimmy Devins: Information on Jimmy Devins  Zoom on Jimmy Devins  I thank Deputy Blaney for sharing his time with me. At the outset, I congratulate the Minister of State, Deputy Moloney, who is doing a wonderful job in a challenging and difficult brief. I am delighted to have the opportunity to say a few words on this important motion.

Muscular dystrophy is a very disabling condition. Unlike many conditions in medicine, unfortunately, it does not have a cure. In that regard we know the fate that stares in the face of those who are unfortunate enough to have this condition.

It is difficult to estimate the number of patients who are affected by muscular dystrophy. Muscular Dystrophy Ireland informs me that it has 509 members but is aware that there are persons with the condition who are not members of the organisation.

Within that group there are 88 who suffer from Duchenne muscular dystrophy which, as the House will be aware, is a much more virulent or aggressive disease for which there is no cure to date. In that regard, the research being carried out in Ireland, the UK and across the world, is of vital importance.

Sadly, many of those with muscular dystrophy, particularly Duchenne muscular dystrophy, have a life expectancy up to the early 20s at most. This is definitely an improvement on what happened in the past but it is still a frightening thought that, unfortunately, somebody who has such a condition will be dead by their early 20s. I would urge the Health Research Board and the Department to find some mechanism whereby the research being carried out, particularly the exon skipping research in the United Kingdom, can be funded to some extent from this country. I am aware there are difficulties in getting the funding to the UK. There is a considerable amount of goodwill for the Department on this issue and I urge everyone involved to try to resolve it.

We must be cognisant of our economic situation. In this regard, the suggestions that I shall make in the few minutes remaining are designed to try to improve the lot of people with muscular dystrophy. Since the pool of people with muscular dystrophy is so small, I appeal for each to be given a medical card. If my estimates are right, we are discussing a maximum of 600 or 650 people. Many already have medical cards. From my discussions with some of the people with this condition, their families and those involved, however, I understand that the provision of a medical card to those who have none would be of great psychological and medical benefit. I request that all sufferers be granted a medical card.

Will the Minister for the Environment, Heritage and Local Government consider a mechanism whereby housing modification grants could be prioritised for people to muscular dystrophy? They need their housing adapted, as most, if not all, will be wheelchair-bound by a certain point. While there are pressing financial constraints on all grants, I appeal to the Minister to consider as a matter of urgency the provision of a housing grant to the group in question. Normally, there is a time lag between when people first apply for housing grants and when they are granted. The unfortunate people under discussion do not have that time at their disposal.

[262]We need more neurologists. I am delighted that the Minister for Health and Children has obtained the agreement of the medical consultants group in that respect. I appeal to her to make the provision of neurologists and their backup teams at various locations a priority. The people involved in the treatment of muscular dystrophy are essentially based in Dublin, but sufferers are scattered throughout the State. I make these requests in recognition of the country’s financial situation.

Deputy Paul Connaughton: Information on Paul Connaughton  Zoom on Paul Connaughton  How many minutes have I?

An Leas-Cheann Comhairle: Information on Brendan Howlin  Zoom on Brendan Howlin  There are ten minutes in this slot, so it will depend on those with whom the Deputy is sharing, namely, Deputy McHugh and, if he is present, Deputy O’Donnell.

Deputy Paul Connaughton: Information on Paul Connaughton  Zoom on Paul Connaughton  I take it that my time slot will be three minutes.

An Leas-Cheann Comhairle: Information on Brendan Howlin  Zoom on Brendan Howlin  If Deputy O’Donnell does not participate, each Deputy will have five minutes.

Deputy Paul Connaughton: Information on Paul Connaughton  Zoom on Paul Connaughton  I congratulate my colleague, Deputy McHugh, on his tenacity in putting this debate on the floor and on his compassion for those who suffer this dreadful disease. I have been briefed by a number of families and there is no doubt that the disease is a heartbreaking one. I am told that it affects approximately 150 boys and is seemingly on the increase. As this particular strain of muscular dystrophy is not well known among the public, a reason for today’s debate is to raise awareness. The disease’s debilitating characteristics claim young lives, usually before they reach 20 years of age.

Thankfully, there is a little bit of good news for the boys who suffer this disease. Parents and families hope for good news when they get up every morning. If Deputy McHugh’s suggestions become a reality, the beam of light at the end of the tunnel will grow a little. I must put on record the great efforts of Duchenne Ireland, the organisation in question, for raising more than €300,000, a large amount of money for the small number of people involved.

As has been pointed out, Duchenne muscular dystrophy, DMD, is one of the world’s lethal childhood genetic diseases. The research being carried out in NUI Maynooth seems to provide a promising new approach to the disease’s treatment. Coupled with the work under way in the UK, there is reason for hope. If either side of the House can do nothing else except push the idea that there will be a major breakthrough for the families and sufferers some day, today will have been worthwhile.

In fairness, the Minister of State, Deputy Moloney, would be the person on the Government side most likely to push this issue. However, I hope that the Minister for Health and Children is listening to the debate. To put it bluntly, I had expected her to be sitting across from me. That is her role and it is important that she and the HSE hear everything that we have mentioned. I believe the Minister of State has compassion for this issue, as much is necessary.

Many of the families in the Visitors Gallery are visiting Dáil Éireann for the first time and cannot understand why the motion will be voted on. Given the fact that Deputy McHugh has striven to address this issue for a long time, I expected the Government’s acceptance of his Bill without significant reservations and the Deputies of this assembly to act in unison to help the people affected. They have a long road ahead of them. It is a pity that there must be a vote. Even so, I hope that we have raised the profiles of the disease and those involved.

Deputy Joe McHugh: Information on Joe McHugh  Zoom on Joe McHugh  I thank my colleagues for speaking on this motion and for their insights. Over recent days, I have learned of a few personal stories and connections of some [263]Deputies on this side of the House. I also thank my colleagues in the Labour Party and Sinn Féin for trying to bring magnanimity to the debate. I acknowledge the role of the Government, which has given time to its motion. I acknowledge the Minister of State, Deputy Moloney, for doing this and the backbenchers’ participation.

We must move forward through constructive negotiation via the Health Research Board, HRB, the Department and the Government. For the affected persons in the Visitors Gallery and those who are listening, the greatest injustice that we as parliamentarians could do them would be to leave the issue alone after today, to make points and to give false hopes and expectations. We should have a deep cognisance of whether we go down that dangerous road after this motion.

The issue comprises three elements, which have been addressed. We are considering the possibility of introducing EU and international standards. Deputy Connaughton, a representative from the west and a farmer, knows all about my next point. Why is it that every time an EU directive on best practice in animal husbandry or fisheries sustainability lands on the desk of the Department of Agriculture, Fisheries and Food or, as Deputy Perry is aware from his time as a committee vice chairman, the then Department of Communications, Marine and Natural Resources, our nation jumps to implement it? In this case, if we introduced a single element of international standards and care, everything else would fall into place.

There is not even an official register. The number of 88 boys has been mentioned, but anecdotal evidence and information from Duchenne Ireland refers to 150 boys. We need to get them on the register. When we cross the Border into Northern Ireland there is a register but there is none here. Why is that the case? The Minister of State should forget about the funding issue and looking for extra money in these recessionary times. That is not the issue. The issue is about introducing international care standards.

I would like to leave the Minister of State with one example, that of Darren McDonagh, whose anniversary occurs this year. Darren was from Buncrana in County Donegal and 13 months ago he travelled to Buswells Hotel to campaign for DMD research and a clinical trial site in this country, when he was 16 or 17 years old. He knew his time was coming near an end, but in his name, with the support and consent of his parents, he still wanted to campaign for the boys that still have a chance and some hope. Regarding the best care and standards, is it right that while Darren was going through his last number of years, during which time his health was declining, that he had to leave Donegal at 4 a.m. for an appointment in Dublin at 9 a.m.? When he arrived for his appointment at 9 a.m., he still was not given priority because DMD is not prioritised under our national rules for the prioritisation of medical support. He would have arrived back in Buncrana at midnight.

Should we allow our boys to sit in a wheelchair for 20 hours? That is what he had to go through. To honour his memory his parents wished for the campaign to be continued and this is where we should keep the focus. I am seeking solidarity on this issue and a magnanimous nature to the debate. I appreciate the input from Members on both sides of the House, but we have to keep this issue moving forward.

Deputy John Cregan: Information on John Cregan  Zoom on John Cregan  I thank Deputy McHugh for giving us all in the House the opportunity to deal with a very real issue. In his closing comments, the Deputy asked for solidarity. There is no doubt in my mind, having spoken to my colleagues, that solidarity is forthcoming from this side of the House. I respect the point made byDeputy Connaughton that the House will have to divide when this debate concludes. That is procedural and will not, in any way, stop us from continuing to give support to Deputy McHugh, to parents and others who are dealing with a very difficult situation in looking after their boys.

[264]This debate is creating awareness. It is an issue that concerns constituents of ours all around the country. Like other speakers, I only became aware of this condition when parents visited me and asked for help and support. One area in which we can help is to deal with the inconsistency in the HSE in different parts of the country. Invariably, if we hear debates on radio, we hear parents making the point that in some old health board areas support is forthcoming, but in others that is not always the case.

Deputy Devins called for the automatic entitlement to a medical card for such people, and I fully support that. When young boys are diagnosed with this condition, they should at the very least have an automatic entitlement to a medical card and their parents who, God knows, have a difficult enough cross to carry, should not have to present accounts and payslips and undergo the rigours of a means test. That is one measure which could be put in place very quickly. The numbers, thankfully, are small, but one is one too many, and this is one measure we could introduce to assist these parents.

In many instances parents will be forced to adapt their homes for their boys. I again ask the State to give support and make it easier for parents to avail of grant aid to have such work carried out. I respect the fact that we are living in a very difficult economic climate and I understand there are limits to our resources. We spend €16 billion annually on health services and, within that, we must have priorities. There is no better case for priority than those suffering from muscular dystrophy.

Another area where I have tried to assist parents is that of E112 forms for foreign travel. In many instances, we do not have the expertise here to treat these boys and they have to travel to England for treatment. The support should be automatic for these children to travel for diagnosis and for treatment. This is another way in which we could help.

I am concentrating on three or four practical issues that affect parents on a daily basis. I compliment Muscular Dystrophy Ireland on the tremendous work it does. It gives support to these parents when perhaps it is not always forthcoming from the State.

I also want to mention the Health Research Board, which could also offer support. It works with Muscular Dystrophy Ireland and many other groups and I welcome the funding for the continued research that is required to help extend the lives of sufferers. I hope we will soon see this disability being dealt with in a way in which lives can be saved.

I compliment the Minister of State, Deputy Moloney. He is the line Minister for people with disabilities and is doing an excellent job because he is hands-on meeting different groups. I again appeal to him to give the required support to these sufferers.

Deputy John Moloney: Information on John Moloney  Zoom on John Moloney  I thank the Leas-Cheann Comhairle. I do not want to just go through the motion of thanking Deputies because I recognise the concerns of Deputies on both sides of the House. I thank those who tabled the motion.

To pick up onDeputy Jan O’Sullivan’s point, I recognise the involvement of the Joint Committee on Health and Children in this area. Seldom have I seen motions come before the House from a committee, but this one originated in the Joint Committee on Health and Children.

I have one small issue. I feel the demeanour, concerns and sincerity of the House and I could not destroy that. However, I cannot accept Deputy Ó Caoláin’s observation that my counter-motion is self-congratulatory. It is far from it. I do not take solace from the fact we had to deal with this issue here today. The counter-motion is a response or clarification of where the Government stands, and is no more than that.

[265]I want to deal with the heart of the issue, rather than waffling on. There is no contest regarding the issue of supporting research in this area. Research has been and will continue to be carried out. It is a pity we should divide, but I understand Members need to bring some clarity to this issue. I am not just responding to this motion. This issue, like all demands for disability and financial support, is ongoing.

Last November the issue became clear to me and the Tánaiste asked me to talk about meeting the group and I intend, further to this debate, to meet 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.

Deputy McHugh talked about international care standards. I am somewhat confused. Are we also talking about international research standards? I believed we bought into and accepted the fact that we must have international research standards. Forgive me if it appears I am trying to distance the Department’s position from this. Far from it. Unless we buy into, support and grant aid international research standards, clearly we could not carry out research in this country alone given the number of people affected, as it would not bring about the productive results we require. We must take that approach in the Department. We have done it and we will continue to do so.

I wish to bring some clarity to the issue. Reference was made to the register and I would prefer to develop that issue. I am not asking the Opposition to pull back from putting the motion to a vote, far from it, but after today the matter will still be ongoing. The specific point I was asked about was further funding for research. I will continue to fund research. I made the point in my opening statement that the call goes out on a regular basis from the research board. I understand the next date when independent experts will decide on what research projects to support is in June. I hope the specific research project we are discussing will be prioritised.

In order to be helpful but without interfering in that independent process, I am prepared to meet the representatives of Duchenne Ireland as soon as possible in the coming days. I wish to clarify whether the group’s concern is international care or international research. I reaffirm the Government’s commitment to supporting research. I could not have said in my prepared script and opening remarks that we are all about research if we are confining the research to this country alone. We have to go the necessary distance to support this cause.

I accept the points made by Deputy Breen in particular. I have no direct family member who is affected but, like other Members of the House I am aware of families that are affected. There are many demands for further funding in the disability area but I see the necessity of funding for this disease from the points made by Members, including Deputy Blaney and the Tánaiste, whom I met some months ago. Research has indicated that the disease can be ameliorated through further research and clinical trials. Reference was made to the register. Are we talking about people registering to go forward for clinical trials? If that is the case, it must be done on a voluntary basis and safeguards and protocols must be built into such a system.

I accept the point that there is little time for those who suffer, but it is essential that we bring clarity to the issues raised, namely the types of research, the involvement of clinical trials, and what we are being asked to do. I do not say that in an effort to prevent Members dividing the House but I cannot give a commitment until I work out what clinical trials are involved. The fact that we did not support clinical trials funding last year may have given rise to the notion that we are ceasing to fund research. I assure everybody of our continued commitment in that regard.

Many other points were raised and I would like to have had the time to address them. It is important to talk about the cost of disability payments. Perhaps we can discuss the issue further [266]on another day but I am not sure when that would take place. It is important to bring clarity on the cost of disability payments.

I was taken by Deputy McHugh’s reference to the case of Darren McDonagh. Although it is not much help, my sympathies go out to him. I accept it is poor practice for a child to have to travel from Donegal. The Minister for Health and Children, Deputy Harney, has been stressing for some time the importance of standards of hospital care. I would not even pretend to offer an excuse for anybody having to withstand what Darren did, especially in the year of disability.

I will try to bring some clarity to my summary remarks. First, I recognise the huge contribution of Duchenne Ireland, which to date has raised €300,000. I accept that the group is not prepared to stand aside and ask someone else to do the business. In response to all the Members who have spoken today, it is clear that we must all be compassionate but demonstrate that by committing to and confirming our involvement in funding research. That is why I have a difficulty with dividing the House in the context of our previous funding and our commitment to further funding.

I might need time to clarify the ongoing proposals for funding, whether it is for clinical research or in terms of people volunteering for research. I reaffirm my commitment to research. The Government’s motion points to the mechanisms that are in place to support research here and abroad and the supports it provides to provide health and personal services, in particular to people with a disability. It is important to stress that. The Government shares the concerns of Members.

I wish to put on record a point on research. I accept Deputy McHugh is concerned about research into the disease. Systems are in place to support charities to develop research programmes relating in particular to rare diseases. Deputy Connaughton made the point that this disease falls into that category. Those mechanisms are operated through the Health Research Board, HRB, which is the statutory body for health research. The scheme to support medical charities recognises and accommodates the fact that these research projects can be led predominantly outside of Ireland. I cannot stress that point enough. We should not be confining our research to this country. International best practice must become part of the strategy. We cannot do that unless we are part of international research in the first instance.

To date, the Health Research Board, has supported Muscular Dystrophy Ireland through co-funding two research projects which advance the case for a reversal of the devastating effects of muscular dystrophy. A new round of proposals for research is under way. The HRB has supported Muscular Dystrophy Ireland and recently met and advised it on the development of its research proposals. I wish to further elaborate on what are the specific research proposals. The process of developing, considering, recommending, approving and funding new proposals for research should be completed within a couple of months. With all sincerity, this information is not merely a response to the motion, the historical facts are available from the HRB and the Department of Health and Children that demonstrate their ongoing commitment.

I will come to a conclusion as I am running out of time. I hope that Muscular Dystrophy Ireland’s proposals will receive a favourable assessment and every assistance will be given to it. I will do all that I can, in conjunction with my officials, to support, promote and, I hope, get the go-ahead from the independent research board.

I thank all the Deputies who contributed to the debate. More important, I thank all those who travelled long distances to be present. I hope they recognise that it is not just a political response that we are giving, it is a compassionate response based on the need to continue our research.

[267]Deputy Joe McHugh: Information on Joe McHugh  Zoom on Joe McHugh  On a point of clarification.

An Leas-Cheann Comhairle: Information on Brendan Howlin  Zoom on Brendan Howlin  There is no such thing as a point of clarification. I am now obliged by the order of the House——

Deputy Joe McHugh: Information on Joe McHugh  Zoom on Joe McHugh  On a point of order then. The Minister of State’s response is on the record. What we are looking for is best international standards. The Minister of State is committed to bringing that about. If he is prepared to accept our amendment, which, in effect, is the same as what he outlined, that there is a drive towards best international standards——

An Leas-Cheann Comhairle: Information on Brendan Howlin  Zoom on Brendan Howlin  As the Deputy is aware, we cannot reopen the debate. That is not a point of order.

Deputy Joe McHugh: Information on Joe McHugh  Zoom on Joe McHugh  In order to be conciliatory, we do not want to put the motion to a vote if the Minister of State is prepared to accept our amendment.

An Leas-Cheann Comhairle: Information on Brendan Howlin  Zoom on Brendan Howlin  I am obliged to put the question.

Question put: “That the words proposed to be deleted stand.”

The Dáil divided: Tá, 64; Níl, 58.

Information on Dermot Ahern  Zoom on Dermot Ahern  Ahern, Dermot. Information on Michael Ahern  Zoom on Michael Ahern  Ahern, Michael.
Information on Noel Ahern  Zoom on Noel Ahern  Ahern, Noel. Information on Barry Andrews  Zoom on Barry Andrews  Andrews, Barry.
Information on Chris Andrews  Zoom on Chris Andrews  Andrews, Chris. Information on Seán Ardagh  Zoom on Seán Ardagh  Ardagh, Seán.
Information on Bobby Aylward  Zoom on Bobby Aylward  Aylward, Bobby. Information on Niall Blaney  Zoom on Niall Blaney  Blaney, Niall.
Information on Aine Brady  Zoom on Aine Brady  Brady, Áine. Information on Cyprian Brady  Zoom on Cyprian Brady  Brady, Cyprian.
Information on Johnny Brady  Zoom on Johnny Brady  Brady, Johnny. Information on Dara Calleary  Zoom on Dara Calleary  Calleary, Dara.
Information on Pat Carey  Zoom on Pat Carey  Carey, Pat. Information on Margaret Conlon  Zoom on Margaret Conlon  Conlon, Margaret.
Information on Brian Cowen  Zoom on Brian Cowen  Cowen, Brian. Information on John Cregan  Zoom on John Cregan  Cregan, John.
Information on Ciaran Cuffe  Zoom on Ciaran Cuffe  Cuffe, Ciarán. Information on Noel Dempsey  Zoom on Noel Dempsey  Dempsey, Noel.
Information on Jimmy Devins  Zoom on Jimmy Devins  Devins, Jimmy. Information on Michael Finneran  Zoom on Michael Finneran  Finneran, Michael.
Information on Michael Fitzpatrick  Zoom on Michael Fitzpatrick  Fitzpatrick, Michael. Information on Seán Fleming  Zoom on Seán Fleming  Fleming, Seán.
Information on Beverley Cooper-Flynn  Zoom on Beverley Cooper-Flynn  Flynn, Beverley. Information on Paul Nicholas Gogarty  Zoom on Paul Nicholas Gogarty  Gogarty, Paul.
Information on John Gormley  Zoom on John Gormley  Gormley, John. Information on Noel Grealish  Zoom on Noel Grealish  Grealish, Noel.
Information on Mary Hanafin  Zoom on Mary Hanafin  Hanafin, Mary. Information on Mary Harney  Zoom on Mary Harney  Harney, Mary.
Information on Seán Haughey  Zoom on Seán Haughey  Haughey, Seán. Information on Máire Hoctor  Zoom on Máire Hoctor  Hoctor, Máire.
Information on Peter Kelly  Zoom on Peter Kelly  Kelly, Peter. Information on Brendan Kenneally  Zoom on Brendan Kenneally  Kenneally, Brendan.
Information on Michael Kennedy  Zoom on Michael Kennedy  Kennedy, Michael. Information on Tony Killeen  Zoom on Tony Killeen  Killeen, Tony.
Information on Seamus Kirk  Zoom on Seamus Kirk  Kirk, Seamus. Information on Michael Kitt  Zoom on Michael Kitt  Kitt, Michael P.
Information on Tom Kitt  Zoom on Tom Kitt  Kitt, Tom. Information on Brian Joseph Lenihan  Zoom on Brian Joseph Lenihan  Lenihan, Brian.
Information on Conor Lenihan  Zoom on Conor Lenihan  Lenihan, Conor. Information on Tom McEllistrim  Zoom on Tom McEllistrim  McEllistrim, Thomas.
Information on Mattie McGrath  Zoom on Mattie McGrath  McGrath, Mattie. Information on Michael McGrath  Zoom on Michael McGrath  McGrath, Michael.
Information on Dr Martin Mansergh  Zoom on Dr Martin Mansergh  Mansergh, Martin. Information on Micheál Martin  Zoom on Micheál Martin  Martin, Micheál.
Information on John Moloney  Zoom on John Moloney  Moloney, John. Information on Michael Moynihan  Zoom on Michael Moynihan  Moynihan, Michael.
Information on Michael Mulcahy  Zoom on Michael Mulcahy  Mulcahy, Michael. Information on M. J. Nolan  Zoom on M. J. Nolan  Nolan, M. J.
Information on Éamon Ó Cuív  Zoom on Éamon Ó Cuív  Ó Cuív, Éamon. Information on Seán Ó Fearghaíl  Zoom on Seán Ó Fearghaíl  Ó Fearghaíl, Seán.
Information on Darragh O'Brien  Zoom on Darragh O'Brien  O’Brien, Darragh. Information on Charlie O'Connor  Zoom on Charlie O'Connor  O’Connor, Charlie.
Information on Willie O'Dea  Zoom on Willie O'Dea  O’Dea, Willie. Information on Rory O'Hanlon  Zoom on Rory O'Hanlon  O’Hanlon, Rory.
Information on Christy O'Sullivan  Zoom on Christy O'Sullivan  O’Sullivan, Christy. Information on Peter Power  Zoom on Peter Power  Power, Peter.
Information on Dick Roche  Zoom on Dick Roche  Roche, Dick. Information on Eamon Ryan  Zoom on Eamon Ryan  Ryan, Eamon.
Information on Trevor Sargent  Zoom on Trevor Sargent  Sargent, Trevor. Information on Brendan Smith  Zoom on Brendan Smith  Smith, Brendan.
Information on Noel Treacy  Zoom on Noel Treacy  Treacy, Noel. Information on Mary Wallace  Zoom on Mary Wallace  Wallace, Mary.
Information on Mary Alexandra White  Zoom on Mary Alexandra White  White, Mary Alexandra. Information on Michael J. Woods  Zoom on Michael J. Woods  Woods, Michael.



Níl
Information on Bernard Allen  Zoom on Bernard Allen  Allen, Bernard. Information on James Bannon  Zoom on James Bannon  Bannon, James.
Information on Seán Barrett  Zoom on Seán Barrett  Barrett, Seán. Information on Joe Behan  Zoom on Joe Behan  Behan, Joe.
Information on Pat Breen  Zoom on Pat Breen  Breen, Pat. Information on Thomas P. Broughan  Zoom on Thomas P. Broughan  Broughan, Thomas P.
Information on Richard Bruton  Zoom on Richard Bruton  Bruton, Richard. Information on Joan Burton  Zoom on Joan Burton  Burton, Joan.
Information on Joe Carey  Zoom on Joe Carey  Carey, Joe. Information on Deirdre Clune  Zoom on Deirdre Clune  Clune, Deirdre.
Information on Paul Connaughton  Zoom on Paul Connaughton  Connaughton, Paul. Information on Noel Coonan  Zoom on Noel Coonan  Coonan, Noel J..
Information on Joe Costello  Zoom on Joe Costello  Costello, Joe. Information on Michael Creed  Zoom on Michael Creed  Creed, Michael.
Information on Lucinda Creighton  Zoom on Lucinda Creighton  Creighton, Lucinda. Information on Michael D'Arcy  Zoom on Michael D'Arcy  D’Arcy, Michael.
Information on John Deasy  Zoom on John Deasy  Deasy, John. Information on Andrew Doyle  Zoom on Andrew Doyle  Doyle, Andrew.
Information on Bernard Durkan  Zoom on Bernard Durkan  Durkan, Bernard J. Information on Olwyn Enright  Zoom on Olwyn Enright  Enright, Olwyn.
Information on Frank Feighan  Zoom on Frank Feighan  Feighan, Frank. Information on Charles Flanagan  Zoom on Charles Flanagan  Flanagan, Charles.
Information on Terence Flanagan  Zoom on Terence Flanagan  Flanagan, Terence. Information on Tom Hayes  Zoom on Tom Hayes  Hayes, Tom.
Information on Michael D. Higgins  Zoom on Michael D. Higgins  Higgins, Michael D. Information on Philip Hogan  Zoom on Philip Hogan  Hogan, Phil.
Information on Brendan Howlin  Zoom on Brendan Howlin  Howlin, Brendan. Information on Paul Kehoe  Zoom on Paul Kehoe  Kehoe, Paul.
Information on Ciaran Lynch  Zoom on Ciaran Lynch  Lynch, Ciarán. Information on Kathleen Lynch  Zoom on Kathleen Lynch  Lynch, Kathleen.
Information on Pádraic McCormack  Zoom on Pádraic McCormack  McCormack, Pádraic. Information on Shane McEntee  Zoom on Shane McEntee  McEntee, Shane.
Information on Dinny McGinley  Zoom on Dinny McGinley  McGinley, Dinny. Information on Finian McGrath  Zoom on Finian McGrath  McGrath, Finian.
Information on Joe McHugh  Zoom on Joe McHugh  McHugh, Joe. Information on Liz McManus  Zoom on Liz McManus  McManus, Liz.
Information on Olivia Mitchell  Zoom on Olivia Mitchell  Mitchell, Olivia. Information on Arthur Morgan  Zoom on Arthur Morgan  Morgan, Arthur.
Information on Denis Naughten  Zoom on Denis Naughten  Naughten, Denis. Information on Dan Neville  Zoom on Dan Neville  Neville, Dan.
Information on Caoimhghín Ó Caoláin  Zoom on Caoimhghín Ó Caoláin  Ó Caoláin, Caoimhghín. Information on Aengus O Snodaigh  Zoom on Aengus O Snodaigh  Ó Snodaigh, Aengus.
Information on Kieran O'Donnell  Zoom on Kieran O'Donnell  O’Donnell, Kieran. Information on Fergus O'Dowd  Zoom on Fergus O'Dowd  O’Dowd, Fergus.
Information on John O'Mahony  Zoom on John O'Mahony  O’Mahony, John. Information on Brian O'Shea  Zoom on Brian O'Shea  O’Shea, Brian.
Information on Jan O'Sullivan  Zoom on Jan O'Sullivan  O’Sullivan, Jan. Information on John Perry  Zoom on John Perry  Perry, John.
Information on Pat Rabbitte  Zoom on Pat Rabbitte  Rabbitte, Pat. Information on Dr James Reilly  Zoom on Dr James Reilly  Reilly, James.
Information on Michael Ring  Zoom on Michael Ring  Ring, Michael. Information on Tom Sheahan  Zoom on Tom Sheahan  Sheahan, Tom.
Information on Sean Sherlock  Zoom on Sean Sherlock  Sherlock, Seán. Information on Róisín Shortall  Zoom on Róisín Shortall  Shortall, Róisín.
Information on Emmet Stagg  Zoom on Emmet Stagg  Stagg, Emmet. Information on Joanna Tuffy  Zoom on Joanna Tuffy  Tuffy, Joanna.
Information on Mary Upton  Zoom on Mary Upton  Upton, Mary. Information on Leo Varadkar  Zoom on Leo Varadkar  Varadkar, Leo.

Tellers: Tá, Deputies Pat Carey and John Cregan; Níl, Deputies Paul Kehoe and Emmet Stagg.

Question declared carried.

Amendment declared lost.

Question, “That the motion be agreed to”, put and declared carried.


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