Simon Harris (Wicklow, Fine Gael) | Oireachtas source

I thank my colleague, Deputy Colm Burke, for raising this important matter. I am pleased to respond here today on behalf of my colleague, the Minister for Health.

Hereditary haemochromatosis is a common recessive disease resulting in over-absorption of iron from the gastrointestinal tract. Over time, excess iron accumulates in the cells of organs including the liver, pancreas and heart, causing damage. Research into the condition by the HSE found that one in 83 people are genetically predisposed to develop the disease in this country. The diagnosis, treatment and management of patients living with hereditary haemochromatosis is guided by the 2015 HSE model of care reviews on the disease. The Irish College of General Practitioners has also produced its own guidance document for the treatment and management of hereditary haemochromatosis and it is specifically referenced in the 2020 curriculum for GP training. Early diagnosis and subsequent management are essential to prevent organ damage and to normalise life expectancy.

GPs play a central role in the diagnosis of haemochromatosis, given the symptoms a patient may present with. Typically, a patient with a known family history of the disease may be diagnosed via their GP as families are advised to screen children when they reach the age of 16. Raised iron studies may also be picked up via routine blood monitoring. The upcoming appointment of nine new advanced nurse practitioners for liver services nationally is also expected to help with the diagnosis and management of patients. It is seen as a positive development in this area.

The treatment for the management of haemochromatosis is regular venesection, 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, IBTS, 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. Measures introduced in recent years have positively impacted treatment for hereditary haemochromatosis patients.

As Deputy Burke referenced, part of the 2019 agreement on GP contractual reforms and service developments ensures GPs are paid by the HSE to provide venesection for General Medical Services, GMS, patients with haemochromatosis. In 2022, 845 GPs provided 6,864 venesections to GMS patients. This service has improved patient experience as eligible patients can now be managed locally by their GP and no longer have to attend hospitals. Not having to trek backwards and forwards to hospital makes a positive difference to patients.

The Minister for Health is aware that treatment for many patients is still provided in hospital as an outpatient or day case. The Health (Amendment) Act 2023, which came into effect on 17 April, removes the acute public inpatient charge of €80 per day for people. This benefits patients who still have to attend hospital for this treatment. The IBTS also accepts haemochromatosis patients who are eligible to donate blood at its fixed and mobile donation clinics nationwide, subject to certain criteria. This service is provided free of charge to the patient.

The current model of care in Ireland recommends that genetic testing should only be performed in those cases where patients have a raised transferrin saturation or a family history of the disease. Any decisions about changes to our national screening programmes, or the introduction of new programmes, such as screening for haemochromatosis, will be made on the advice of our National Screening Advisory Committee, NSAC. The NSAC is an independent expert committee which I was pleased to found. It makes recommendations to the Minister and the Department of Health on population screening in Ireland. In 2022, the committee's annual for proposals for new screening programmes or changes to our existing programmes included a submission on genetic haemochromatosis. This proposal, along with others relating to other conditions, is currently under consideration by the NSAC. The committee, as Deputy Burke may know, has published its work programme on its website to set out the status of proposals currently being considered. In light of this debate, I will ask my colleague the Minister for Health to keep the Deputy updated and to respond to the suggestion about the need for a national strategy in the context of the work the NSAC is doing.

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