Tuesday, 11 February 2014
Rare Diseases Strategy Implementation
I apologise for being late. I was awaiting a reply to a question at the health committee. This issue is about the provision of a national office for rare diseases. Much work is being done in this area and I was asked to raise this issue in view of the fact that there would be a national conference in Belfast at the end of the month and that it would be helpful if we could have some idea when it was proposed to put this office in place. It is accepted that there is a need for it and that it is the long-term plan. We await the long-term plan and I want to know when it will be announced. My Adjournment matter sets out clearly what I seek and I wonder if I could have clarification.
I thank the Senator for raising this important issue on the Adjournment and providing me with the opportunity to update the House on progress in the development of the national plan for rare diseases. Rare diseases are life threatening or chronic debilitating conditions affecting no more than five in 10,000 people. Between 5,000 and 8,000 rare diseases have been described, affecting approximately 6% to 8% of the population in the course of their lives. Approximately 80% of rare diseases have a genetic origin and the life expectancy of patients with rare diseases is significantly reduced. Many of these conditions are complex, severe and debilitating.
Ireland has been supportive of EU proposals on rare diseases and my Department is finalising its national plan for rare diseases accordingly. Two national conferences and a public consultation day were organised to discuss what might feed into the development of a national strategy for rare diseases. In April 2011 the Minister for Health, Deputy James Reilly established a national steering group to develop a policy framework for the prevention, detection and treatment of rare diseases based on the principles of high quality care, equity and a patient-centred approach. The policy will operate over a five year period, take account of the Council recommendation on rare diseases in 2009 and define priority actions, subject to resource availability.
The national steering group is working on many areas relevant to the issue of rare diseases, including the identification of appropriate centres of expertise, access to appropriate medication and technology, research as an integral part of overall care for rare diseases, including access to clinical trials, where appropriate, and the empowerment of patient organisations. The steering group is also considering for its report the development of a national office for rare diseases, as referred to by the Senator. Its purpose would be to facilitate the co-ordination and timely access to centres of expertise for rare diseases, both nationally and internationally. Such an office could act as a national point of reference on services, diagnostics, care pathways and information on rare diseases.
The report by the Department on recommendations for dealing with rare diseases, including the establishment of a national office, is being finalised and the Department's officials are meeting the HSE to discuss implementation of the report. The HSE has established a national clinical programme for rare diseases, NCPRD; a national clinical lead has been appointed and a programme manager is in place. The programme aims to improve and standardise patient care for individuals affected by rare diseases in Ireland by increasing detection and prevention, facilitating early and timely diagnosis, intervention and co-ordination of care and increasing awareness, information and support. The programme is progressing with the establishment of a rare diseases national working group which will consist of experts in various fields to identify best practices. The programme will also be supported by the advice and guidance of a clinical advisory group appointed by the Royal College of Physicians of Ireland. A key priority of the NCPRD is to assist with the provision of information and helpline access for patients and families through the establishment of a centralised rare disease information office. Regrettably, I do not have a specific date for publication of the report. I assure the Senator that I am aware of this work and regard it as important, as he does. I am aware of the conference to be held in Belfast at the end of the month and the report will be published as soon as possible.
I thank the Minister of State for his comprehensive reply and apologise, again, for being late. I understand there are many demands on his Department; however, having worked with a number of the organisations, we should do everything possible to progress this matter. If the national plan was published, it would help. Is it possible for the Minister of State to give any guideline as to when the report is likely to be issued? The reason I was delayed in coming was there was a discussion at the health committee about a clinic in Cork where funding was provided and €500,000 worth of equipment is lying idle because of the embargo on taking on staff. I hope we do not have a scenario where we cannot go ahead because of the restrictions which are not looked at in an overall context. We might try to receive some clarification at an early date on the matter.
I would like to give the Senator the clarity on specific dates and timelines that he seeks. Unfortunately, I am not in a position to do so today. I know about this area of work. The Senator has raised this issue before; he has been very good at raising it and pressing for action. I will take his raising of it again very much as a spur to engage in further action and specifically to try to establish for him as soon as I can what the timelines are likely to be. There are pressures and resource issues in the Department. The Senator's point on the importance of having this office established is very well made.
I will take it very much on board.