James Reilly (Dublin North, Fine Gael)
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Question 148: To ask the Minister for Health and Children her best estimate or that of the Health Service Executive of the percentage of the population who have hereditary haemochromatosis; the number of persons here diagnosed with this condition; the number of persons here who needed a liver transplant as a result of the condition; the number of persons who have had severe kidney and pancreas damage as a result of the condition; the estimated cost of the condition to the public health services; and if she will make a statement on the matter. [44102/09]

Mary Harney (Dublin Mid West, Independent)
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My Department published a Report of a Working Group, which I set up in 2006 to examine the nature and extent of haemochromatosis in Ireland and to advise me on the action necessary to address the problems caused by haemochromatosis.

That report noted that, in the absence of a national register, estimating the numbers of persons with known disease is difficult and we must rely on secondary sources. The report identified a number of prevalences for haemochromotosis in populations, ranging from 0.2% to 1% of the population. Based on a prevalence of 1 in 100, the report estimated that 40,000 individuals carry the gene mutation causing hereditary haemochromotosis. The report also estimated that 1,500 hospital admissions included a diagnosis of haemochromotosis in 2002.

Treatment for haemochromotosis and related complications are provided as part of hospital services as well as through the primary care system, and are not provided for out of an individual budget. As a result, the report did not estimate the cost of these treatments for the public health services and this data is not compiled by my Department. Similarly, data on liver transplants and kidney and pancreas damage as a result of the condition are not held by my Department.

The IBTS is considering the options for an expansion of its service for haemochromatosis patients, and is exploring this position with stakeholders at present. I have been in contact with the Health Service Executive to ensure that there is a consistent policy in relation to the provision of venesection services throughout the country.