David Stanton (Cork East, Fine Gael)
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Question 54: To ask the Minister for Health and Children if she plans to develop a national plan for rare diseases; the consultations she has had with rare disease and genetic disorder patient support groups and other organisations in this regard; and if she will make a statement on the matter. [10543/10]

Mary Harney (Dublin Mid West, Independent)
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The term "rare disease" refers to conditions with a low prevalence of no more than five per 10,000 persons in the population. It is estimated that there are between 5,000 and 8,000 distinct rare diseases affecting in total between 6% and 8% of the population over the course of their lives.

I have met with the Irish Platform for Patient Organisations, Science and Industry, IPPOSI, which represents rare disease patient organisations and industry and the Genetic and Rare Disorders Organisation, GRDO, on issues relating to health care for patients with rare diseases.

Research on rare diseases is scarce and scattered in different laboratories throughout the European Union. Owing to 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. Progress has been made on specific rare diseases such as haemophilia. Through the work of the Haemophilia Produce Selection and Monitoring Advisory Board, the cost we are now paying for blood products has reduced substantially in recent years.

I have asked the clinical director of the Health Service Executive, Dr. Barry White, to explore a mechanism whereby a ring-fenced drugs budget could be put in place to specifically cater for people with other rare diseases. Work has also commenced on other elements of rare disease policy such as screening procedures and the organisation of reference centres and clinical networks involved in the diagnosis and treatment of rare diseases.

In view of the low prevalence of rare diseases, there is added value in working collaboratively at EU level and Ireland has supported the EU Council recommendation on an action plan for rare diseases which was adopted in June 2009. Ireland has two years to prepare a national plan.

David Stanton (Cork East, Fine Gael)
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Is it true that 140,000 people in Ireland suffer from rare diseases? When will the action plan be published?

Mary Harney (Dublin Mid West, Independent)
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While I do not have a figure on the numbers involved, it is anticipated that between 6% and 8% of the population is affected by a rare disease. Support is provided for many rare diseases, for example, haemophilia. In a constrained budgetary environment it is difficult to make choices where one product may help 1,000 people and another product only ten people. I have had a good engagement with Dr. Barry White and we may ring-fence a sum of money each year to be allocated to budgets for rare diseases. This would avoid the challenge such budgets face from disease groups with much larger numbers of patients.

David Stanton (Cork East, Fine Gael)
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A call has been made to develop a national action plan.

Mary Harney (Dublin Mid West, Independent)
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Ireland must produce a national action plan and one is in preparation.