John Moloney (Laois-Offaly, Fianna Fail)

I move:

That Dáil Éireann:

— recognises the funding provided to Muscular Dystrophy Ireland (MDI) each year by the Health Service Executive to provide services to its members (€1.2 million in 2008);

— recognises that the Health Research Board (HRB) is the statutory agency with responsibility for funding health research in Ireland with a view to improving health and health outcomes;

— notes the funding provided to the HRB to allow it to jointly fund research projects with the Medical Research Charities Group (MRCG) including MDI;

— recognises the fact that research charities, including MDI, especially those investigating rare disorders, wish to fund projects that are led predominantly and perhaps even fully outside of Ireland and the fact that the HRB has developed the guidelines for this scheme with international efforts in mind;

— acknowledges the HRB work with the MRCG to achieve two objectives:

— to increase the amount of funding available to support research projects relevant to charities and specifically for rare diseases; and

— to develop a research management capacity among the research charities so that they are involved in managing calls for applications, peer reviewing applications and managing research contracts in line with international best practice;

— accepts that the HRB has, to date, cofunded two projects with MDI including a project on Duchenne Muscular Dystrophy and the HRB recently met with Duchenne Ireland in relation to the current call for applications;

— acknowledges this Government's commitment to people with a disability through the National Disability Strategy which was motivated by the needs of people such as those with muscular dystrophy; and

— welcomes the additional funding which has been invested in support services for people with disabilities, including those with muscular dystrophy, which was provided to enhance the level and range of services available to adults and children with intellectual, physical and sensory disabilities and those with autism and for the recruitment of additional professional support staff.

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.

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 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.

See this speech in context