Seanad debates

Tuesday, 9 March 2010

1:00 am

Photo of Michael FinneranMichael Finneran (Roscommon-South Leitrim, Fianna Fail)

I will be taking this Adjournment debate on behalf of my colleague, the Minister for Health and Children, Deputy Harney. The European Union has been developing an action framework in the field of rare diseases. Ireland has supported the proposals in this area which concluded with a Council recommendation in June 2009. The key elements are that member states, including Ireland, develop plans and strategies for rare diseases and that this be completed by the end of 2013. In the context of a proposed rare disease plan for Ireland, this will include actions in a range of areas.

The national plan will need to consider the appropriate information systems for rare diseases. There is added value in adopting international definitions for rare diseases and to learn the lessons on the most appropriate registries that can be used to plan and manage services. The identification of centres of expertise for rare diseases will be a key priority under the plan. Allied with this is the organisation of suitable health care pathways so that patients and professionals know where the most appropriate care can be provided. In Ireland's case, it will be important that the identified centres and reference networks link in with their European counterparts on all these issues including health care professional training. The development of a research infrastructure with appropriate financial support is a further priority. This is an area where there is obviously added value in working with our European partners on programmes for rare diseases research.

In November 2009, two important documents were launched, the action plan for health research prepared by the health research group and the Health Research Board's strategic business plan. While each document has its own particular focus, taken together they represent a coherent and complementary approach to building a health research system that will see Ireland become a leading international centre for world class health research.

Research represents hope for many of the rare disease patients who are without cure today. In Ireland, many people are affected by a rare disorder, but many more individuals could unknowingly have a rare condition. Having a national rare disease plan would be an important step towards establishing a systematic and co-ordinated approach to dealing with some of the many challenges posed by rare conditions.

Access to orphan medicines is an issue which is key to effective clinical management. In Ireland the elements exist to have a transparent process to ensure equitable access to orphan drugs as well as to incentivise orphan drug development through our strong pharmaceutical and bio-tech industry in this country. Because of the small market, investment in medicinal products and devices for people with rare diseases is limited. As a result, the price for many of the treatments is such that it is impossible for them to meet conventional criteria for cost-effectiveness. The Minister for Health and Children, Deputy Mary Harney, has asked the HSE to explore a mechanism whereby a ring-fenced drugs budget could be put in place to cater specifically for people with other rare diseases.

The action plan for rare diseases adopted by the Council of European Union will provide the basis for our national plan. The Minister is encouraged by the recent joint conference on rare diseases organised by IPPOSI, GRDO and MRCG and that there is strong support from all stakeholders for this development. She would like to acknowledge this as well as the support from individual disease organisations and industry.

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