Patrick O'Donovan (Limerick County, Fine Gael) | Oireachtas source

I speak as somebody who represents a constituency where people are suffering from haemochromatosis. They would not like to think that someone is just handed a script and told to read it out, which is exactly what I am about to do.

I thank Senator Conway for raising this issue. Haemochromatosis is a hereditary condition, in which excessive amounts of iron are absorbed from the diet. This iron is deposited in various organs, mainly in the liver, but also in the pancreas, heart, pituitary and joints. Symptoms are often non-specific, fatigue, joint pain and others. Symptoms such as liver disease and diabetes, if left untreated, can be fatal. Hereditary haemochromatosis is common in Ireland. A 2015 HSE model of care review into the condition found that one in 83 Irish people carry two copies of the HFE gene, which is responsible for haemochromatosis. These people are predisposed to develop iron overload.

The treatment for the management of hereditary haemochromatosis is therapeutic services, which involves patients having their blood taken. This can happen in several settings including hospitals. The Department of Health and HSE agree that such services should be provided at the lowest level of complexity that is clinically and operationally feasible. By moving to community based treatment, it allows necessary flexibility for patients who require life-long care, eases additional costs and allows access to treatment at suitable times. Measures introduced in recent years have positively impacted treatment for hereditary haemochromatosis patients.

In 2019, agreement was reached with the Irish Medical Organisation, IMO, on a major package of GP contractual reforms and service developments. These benefit patients and GPs, who now provide services for General Medical Services, GMS, patients with haemochromatosis. This means eligible patients can be now managed locally. In 2022, 845 GPs provided 6,864 therapeutic services to GMS patients. This service has improved patient experience as patients no longer have to travel to secondary care hospitals for treatment. As announced in budget 2023, GP visit card eligibility is to be extended to those who earn the median household income or less. This will provide more treatment options for those patients who qualify under this expansion.

The Irish Blood Transfusion Service also accepts hereditary haemochromatosis patients who are eligible to donate blood at fixed and mobile donation clinics nationwide. Patients can attend, free of charge, a maximum of four times a year with a minimum of 90 days between them. Eligible patients continue to have their hereditary haemochromatosis managed by their physician. The Minister is aware that for many patients, treatment is still provided in hospital as an outpatient or day case. The Health (Amendment) Act 2023, which came into effect yesterday, 17 April, removes the acute public inpatient charge of €80 per day for people. This further benefits those hereditary haemochromatosis patients who attend hospital for their treatment.

It is important to be aware that any decisions about changes to our national screening programmes, or the introduction of new programmes, such as screening for genetic haemochromatosis, will be made on the advice of our national screening advisory committee.