Colm Burke (Cork North Central, Fine Gael) | Oireachtas source

I thank Senator Conway for raising this issue. The last time I was in this House and I raised this issue, the Minister who replied was someone who had haemochromatosis. I thank Senator Conway for the opportunity to speak on it in the Seanad on behalf of my colleague the Minister for Health, Deputy Stephen Donnelly.

Haemochromatosis is a hereditary condition, common in Ireland, in which excessive amounts of iron are absorbed from the diet. Over time, excess iron accumulates mainly in the liver but also in the pancreas, heart, anterior pituitary and joints, causing damage. The resulting symptoms are often non-specific fatigue and joint pains, and the commonest complications are liver disease and diabetes. If left untreated, haemochromatosis can be fatal. According to the HSE’s 2015 model of care review, one in 83 Irish people were found to carry two copies of the HFE gene which predisposes them to develop iron overload.Early diagnosis and subsequent management of hereditary haemochromatosis is essential to prevent organ damage and normalise life expectancy.

Hereditary haemochromatosis 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 several settings, including acute hospitals, GP surgeries or at an Irish Blood Transfusion Service facility. The Department of Health and the HSE agree that such services should be provided at the lowest level of complexity that is clinically and operationally feasible. Community-based treatment allows the flexibility necessary for patients who require lifelong care. It also eases additional costs and allows these patients to access treatment at suitable times. The HSE has previously undertaken two model of care reviews on hereditary haemochromatosis and therapeutic phlebotomy for patients with the condition. The diagnosis, treatment and management of patients is guided by these reviews, as well as by the Irish College of General Practitioners guidance document, Hereditary Haemochromatosis - Diagnosis and Management from a GP Perspective.

Measures introduced in recent years have positively impacted treatment for hereditary haemochromatosis patients. Since early 2020, GPs provide venesection for GMS patients with haemochromatosis, meaning that eligible patients can be managed locally and no longer have to attend hospitals for therapeutic phlebotomy. In the past year, there have been two increases in the weekly basic rates of income to assess GP visit card eligibility. These increases facilitate access for those patients who qualify under this expansion.

The Irish Blood Transfusion Service accepts hereditary haemochromatosis patients who are eligible to donate blood at their fixed and mobile donation clinics nationwide. Patients can attend free of charge, up to four times a year. Eligible patients continue to have their hereditary haemochromatosis managed by their physician, including the monitoring of ferritin levels.

The Minister is aware that, for many patients, treatment is still provided in hospital as an outpatient or day case, as the Senator outlined. The Health (Amendment) Act 2023 removed the acute public inpatient charge of €80 per day, benefiting hereditary haemochromatosis patients who attend hospital for their treatment.

The current model of care recommends that genetic testing should only be performed in those with a raised transferrin saturation or if there is a family history of the disease. Any decision to introduce screening for hereditary hemochromatosis will be made on the advice of the National Screening Advisory Committee. The committee's annual call for proposals in 2022 received a submission on genetic and hereditary haemochromatosis. The committee’s work programme, which is published on its website, states that consideration of the hereditary haemochromatosis screening has been deferred pending significant new evidence emerging.

I will deal with any comments the Senator wishes to make. It is important to acknowledge that a lot of progress has been made on this issue over the past three to four years.