Malcolm Byrne (Wicklow-Wexford, Fianna Fail)
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11. To ask the Minister for Health the Government strategy to raise awareness of haemochromatosis. [17294/26]

Martin Daly (Roscommon-Galway, Fianna Fail)
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I am taking this on behalf of Deputy Byrne but it is something close to my own heart as well. It is to ask the Minister about the Government's strategy to raise awareness of haemochromatosis.

Haemochromatosis is a disease that causes iron overload in the body. It is a genetically inherited disease. It is the most prevalent genetic disease in Ireland. One in 20 people will carry part of the gene and one fifth of those will develop full-blown iron overload.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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Haemochromatosis is a hereditary condition, common in Ireland, characterised by an over-absorption of iron from the gastrointestinal tract. Excess iron accumulates in organs including the liver, pancreas and heart, causing damage. I am informed that Ireland has been confirmed as having the highest rate of haemochromatosis worldwide. I am advised by the HSE that the Irish Haemochromatosis Association receives €55,000 in funding from the Health Service Executive each year to support engagement, raise awareness, support patients, their families and the medical community and raise awareness of haemochromatosis. The association’s initiatives include World Haemochromatosis Awareness Week, taking place from 1 to 7 June every year, and the GP practice nurse training and education programme. The diagnosis, treatment and management of patients living with the condition is guided by the hereditary haemochromatosis model of care, developed by the hereditary haemochromatosis working group, and the guidance document of the Irish College of General Practitioners, Hereditary Haemochromatosis: Diagnosis and Management from a GP Perspective. I understand that the condition can be treated very effectively by a process called venesection or therapeutic phlebotomy, which involves the patient having their blood taken. This can happen in acute hospitals or GP surgeries or at an Irish Blood Transfusion Service, IBTS, facility. It is extraordinary that Ireland has the highest rate of this condition worldwide and we need to do more to drive awareness of it.

Martin Daly (Roscommon-Galway, Fianna Fail)
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I thank the Minister for that. This is really important. Haemochromatosis was a hidden disease up to maybe 20 years ago. People would appear late in the disease with diabetes and liver failure and die from this condition. Thankfully, there is greater awareness in recent times. It was in my own family. My father had it and it was in his family. It can be managed very well. We need to diagnose it early. We need to be absolutely aware of how common it is. I do not think many people are aware of that. It can be simply treated in primary care. When we talk about capacity in general practitioner surgeries, that is an issue because while the State has a fee for GPs to do the venesection in their surgeries, many do not have the capacity to do so. People with haemochromatosis end up in hospital at some distance from their own homes. It is about raising awareness because it is the most prevalent genetic disease in Ireland. It is called "the Celtic curse".

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I do not know what the reasons for that are and why Ireland has the highest rate of it. I would be quite interested to find that out. As the Deputy says, this is a condition that can be managed well, particularly at a primary care level. It is the most common genetic disease here, with one in 83 people genetically predisposed to develop the condition. The symptoms are sort of non-specific and include non-specific fatigue and joint pain. The diagnosis is very variable. However, it can be treated well and effectively and it is important we discuss it here in Parliament as part of raising awareness of this very common condition among the Irish population. I thank the Deputy for his question.

Malcolm Byrne (Wicklow-Wexford, Fianna Fail)
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I am somebody who has haemochromatosis. I was very lucky about ten years ago that I had the diagnosis. I was simply feeling fatigued. It was a general checkup and I was lucky that my GP decided to check my iron levels. It is a perfectly manageable disease, as Deputy Daly has pointed out, and I am very fortunate that I can have a venesection in my local GP's surgery. The challenge, particularly among men, who perhaps do not go to the doctors as regularly as they should, is that there is not the level of awareness. When somebody leaves this condition undiagnosed and as the condition develops, the risk particularly of arthritis or other diseases grows. I ask that there would be a national awareness-raising campaign because of the disease's prevalence in Ireland. As has been said, given that potentially one in 83 adults carries the genes for haemochromatosis, the more awareness about this, the better.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I thank the Deputy for sharing his own experience and perspective because that helps to tell the story of how common this is and what the impact is. We support the Irish Haemochromatosis Association and World Haemochromatosis Awareness Week, which takes place from 1 to 7 June every year. The association also runs the GP practice nurse training and education programme. To the extent we can do so, we will get behind that world awareness programme every year in the first week of June, a lovely week of the year, to drive awareness of haemochromatosis, and I am sure the Deputies will be at the forefront of that.

Pádraig Mac Lochlainn (Donegal, Sinn Fein)
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Deputy Ó Laoghaire advises that he is on his way.

David Maxwell (Cavan-Monaghan, Fine Gael)
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We will take Question No. 13 and then Deputy Sherlock, who has been waiting here for some time.