Martin Daly urges greater awareness of haemochromatosis in Ireland
Martin Daly spoke in parliament on behalf of Deputy Malcolm Byrne to ask the minister about the government's strategy to raise awareness of haemochromatosis. He warned Ireland has the highest rate worldwide and urged more action to improve early diagnosis and management.
Prevalence and genetic risk
He said haemochromatosis is the most prevalent genetic disease in Ireland, describing it as a hereditary condition that causes iron overload. He cited figures that one in 20 people will carry part of the gene and that one-fifth of those will develop full-blown iron overload; the minister later noted one in 83 people are genetically predisposed to develop the condition. He also referred to the condition as the "Celtic Curse."
Funding and awareness initiatives
The minister informed the House that the HSE provides 55,000 euros annually to the Irish Haemochromatosis Association to support engagement, patient support and medical community awareness. The Association's programmes include World Haemochromatosis Awareness Week, held from 1 to 7 June each year, and a GP Practice Nurse Training and Education Program.
Guidance and model of care
Diagnosis, treatment and management are guided by the hereditary haemochromatosis model of care developed by the Hereditary Haemochromatosis Working Group and the Irish College of General Practitioners. There is a specific guidance document titled Hereditary haemochromatosis diagnosis and management from a GP perspective for general practice use.
Treatment and delivery settings
Both speakers noted that venesection - also called therapeutic phlebotomy - is an effective treatment and can be delivered in acute hospitals, GP surgeries or an IPTS facility. The deputy highlighted that while there is a state fee for GPs to carry out venesection, many GP practices lack the capacity so patients often travel to hospitals some distance from home.
Calls for improved awareness and early diagnosis
Martin Daly and the minister agreed on the need to raise awareness because symptoms can be nonspecific and late diagnosis can lead to organ damage. They emphasised the importance of early diagnosis, primary care management and continued public and professional education on haemochromatosis.
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Thank you. I'm taking this for Deputy Malcolm Byrne, but it is something that's close to my own heart as well, 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's a genetically inherited disease. It's the most prevalent genetic disease in Ireland. One in 20 people will carry part of the gene, and one-fifth of those will develop a full-blown iron overload. Thank you, Deputy. The 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, heart, causing damage. I am informed that Ireland has been confirmed as having the highest rate of haemochromatosis worldwide. And I'm advised by the HSE that the Irish Haemochromatosis Association receives 55,000 euros of funding from the Health Health Service Executive each year to support engagement, to raise awareness, to support patients, their families and the medical community, and to raise awareness of haemochromatosis. The Association's initiatives include World Haemochromatosis Awareness Week, taking place from the 1st to the 7th of June every year, and the GP Practice Nurse Training and Education Program. 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 Irish College of General Practitioners. Hereditary haemochromatosis diagnosis and management from a GP perspective guidance document. I do 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, and that can happen in acute hospitals, GP service surgeries or an IPTS facility. But it is extraordinary that Ireland has the highest rate of this condition worldwide, and we do need to do more to drive awareness in relation to it. Deputy Byrne, get his breath. Thanks, Minister, for that. It's really important. It was a hidden disease up until maybe 20 years ago. People would appear late in the disease with liver failure, diabetes 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 their family. So, yes, it can be managed very well. We need to diagnose it early. We need to be absolutely aware of how common it is. I don't think many people are aware of that. It can be simply treated in primary care, and when we talk about capacity in general practitioner surgeries, that is an issue because whilst the state has a fee for GPs to do the venusection in their GP surgeries, many don't have the capacity to do so. People with hemochromatosis end up in hospital having at some distance from their own homes. So, I suppose it's about raising awareness because it is the most prevalent genetic disease in Ireland. It's called the Celtic Curse. Thank you, Minister. Minister. Thank you, Deputy, and I wonder, I don't know what the reasons for that are and why it would be that Ireland has the highest rate of that. I'd be quite interested to find that out. But as you say, it is a condition that can be managed and managed well, particularly at a primary care level. It is the most common genetic disease here with 1 in 83 people being genetically predisposed to develop the condition. And, you know, the symptoms are sort of nonspecific, nonspecific fatigue and joint pain, and the diagnosis is very variable. But as you say, it can be treated well and can be treated effectively. And it's important that we discuss it here as part of raising awareness of this very, very common condition among the Irish population here in the Irish Parliament. Thank you for your questions. Deputy Deputy.
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