Dáil Éireann Debate, Tuesday - 20 June 2023
717. Deputy Róisín Shortall asked the Minister for Health if his attention has been brought to a campaign by an organisation (details supplied) calling for a national strategy for haemochromatosis to be developed in Ireland; his views on same; if he will commit to developing a national strategy; and if he will make a statement on the matter. [29690/23]
Amharc ar fhreagraHereditary Haemochromatosis (HH) is a common autosomal recessive disease resulting in over absorption of iron from the gastrointestinal tract. Over time, excess iron accumulates in cells of organs including the liver, pancreas and heart causing damage. Research into the condition by the HSE found that 1 in 83 people are genetically predisposed to develop HH in this country.
I am aware of the advocacy work of the Irish Haemochromatosis Association in this area and I am in favour of a cohesive, multifaceted approach to the treatment of this disease utilising different areas of our health service in order to provide the required treatment patients need.
During my appearance before the Joint Committee on Health on 26 April this year, it was requested that a contact person be appointed for engagement with patient groups on Hereditary Haemochromatosis. In response, HSE Chief Clinical Officer, Dr Colm Henry, agreed to meet with Haemochromatosis Patient representatives on these issues.
The HSE has previously undertaken two Model of Care reviews on Hereditary Haemochromatosis and Therapeutic Phlebotomy for Patients with Hereditary Haemochromatosis. The diagnosis, treatment and management of patients living with HH is guided by these reviews as well as the Irish College of General Practitioners’ (ICGP) ‘Hereditary Haemochromatosis- Diagnosis and Management from a GP Perspective’ guidance document.
The ICGP has been very active regarding the diagnosis and treatment of HH for many years. In addition to producing its own guidance document for the disease, HH is also specifically referenced in the Curriculum for GP training (2020). The upcoming appointment of 9 new Advanced Nurse Practitioners for the liver services nationally is also expected to help with the diagnosis and management of HH patients.
The treatment for the management of HH is regular venesections, which involves the patient having their blood taken and monitoring of bloods. 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. Venesections are typically performed via a wide variety of services in Ireland including GPs, nurse-led clinics within hospitals, in outpatient departments, via private services, or at an IBTS facility.
In May 2019, agreement was reached with the IMO on a major package of GP contractual reforms and service developments which will benefit patients and GPs. As part of this agreement, and since the beginning of 2020, GPs are paid by the HSE to provide venesection for GMS patients, those who hold a medical card or GP visit card, with haemochromatosis. GMS patients with this condition can now be managed locally by their GP and may no longer have to attend hospitals for therapeutic phlebotomy.
I am aware that for many patients, treatment is still provided in hospital as an out-patient or day case. The Health (Amendment) Act 2023, which came into effect on 17 April 2023, removes the acute public in-patient charge of €80 per day for people, benefiting HH patients who attend hospital for their treatment.
The Irish Blood Transfusion Service accepts HH patients who are eligible to donate blood at their fixed and mobile donation clinics nationwide. Patients can attend, free of charge, a maximum of four times a year with a minimum of ninety days between phlebotomies. Eligible patients continue to have their condition managed by their GP, including the monitoring of ferritin levels.
Early diagnosis and subsequent management of HH is essential to prevent organ damage and normalise life expectancy. The current model of care in Ireland recommends that genetic testing should only be performed in those with a raised transferring saturation or if there is 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 HH, will be made on the advice of our National Screening Advisory Committee (NSAC).
The NSAC is an independent, expert committee that makes recommendations to the Minister and the Department of Health on population screening in Ireland. The Committee's Annual Call 2022 for proposals for new screening programmes or changes to our existing programmes, received a total of 19 submissions, which included a submission on Genetic/Hereditary Haemochromatosis.
This proposal, along with proposals relating to several other conditions, is currently under consideration by NSAC. The Committee has published its Work Programme on its website, setting out the status of proposals currently being considered.
Any screening programme undertaken for Haemochromatosis would involve a public awareness campaign for the purposes of providing information regarding the symptoms of haemochromatosis, this would be an essential component of such a programme.
