Colm Burke (Cork North Central, Fine Gael)
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I thank the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris, for coming to the House to deal with this matter. This is about having a national strategy for dealing with haemochromatosis. It is about having equal access to testing, diagnosis, and treatment. I understand that there is a proposal to the National Screening Advisory Committee as regards having a national screening programme. It is something of which we need to be conscious in the sense that, if the illness is not identified and people do not get treatment, they can suffer from organ damage. One in 83 people in this country have haemochromatosis; one in five carry the gene. The problem is that if it is not treated and not identified, it can cause problems to the liver, heart, lungs, and body tissue. Some of the symptoms are chronic tiredness, joint pain and abdominal pain. Those are some, but not all, of the symptoms. There is a simple way of dealing with this, which is by having a national screening programme that would require a simple blood test. I know the Minister was involved back in 2019, when an agreement was reached with the Irish Medical Organisation, IMO, at the time as regards moving the care out of the hospital system. However, that has not worked everywhere and we do not have a comprehensive programme for dealing with it. It is now time to put in place a national screening programme and that we have a national strategy for dealing with it. This is about saving lives in the first instance but it is also about saving the time that is taken up in hospitals where people end up having to be admitted when, had the issue been identified at an earlier stage, they would not need to be in hospital. There is also still the problem where an awful lot of people are still attending outpatient departments in hospitals, which is not necessary because we should be able to deal with this at a local level with GPs. We need to get that done whereby people will not be required to attend outpatient clinics to have the treatment. Obviously, part of the treatment for people with excess iron in their blood is that they have to donate blood. We need to have co-ordination between the GPs, the HSE, and the blood bank and I ask that a national strategy be put in place.

Simon Harris (Wicklow, Fine Gael)
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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.

Colm Burke (Cork North Central, Fine Gael)
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My concern is that the Irish Haemochromatosis Association's figures indicate that at any one time up to 20,000 people have not been diagnosed. That is why we have the ongoing problem of people developing health problems and suffering organ damage, as the Minister and I have mentioned. Accordingly, why not have a national strategy and a screening programme that would identify people where an immediate family member has already been diagnosed? Much work could be done. There is a benefit to the person who has haemochromatosis but may not have symptoms. Protection is also provided to them in the form of ensuring people do not suffer long-term damage to organs like their heart or lungs. There would also be a huge saving to the health service itself.

As I understand it, the system set up in 2019 is not fully functioning across the country and we need more co-ordination between GPs, the HSE and especially the IBTS. There is a benefit for the IBTS, as part of the treatment involves taking blood from people and that blood is then available to be provided to our hospitals when they need it. That is an important part of this. While there is a cost factor in providing the service, there is also a benefit for the IBTS in getting access to blood, which is something that is required.

I ask that this matter be given priority. I am aware the proposal has gone into the NSAC. I hope it will come forward in the not too distant future with a proposal to adopt what is being suggested here. The Department should also become more involved in developing this strategy.

Simon Harris (Wicklow, Fine Gael)
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I thank Deputy Burke for raising this important matter, which affects so many people and to which so many others are predisposed as well. We have objectively seen service improvements for patients with haemochromatosis in recent years. The 2019 GP contractual improvements involved moving services. People sometimes had to go to hospital for services that can now be accessed from the local GP. The plan this year is to hire more advanced nurse practitioners. That, through liver treatment and the management of liver disease, could identify more patients at an earlier stage. From a practical, cost-of-living point of view, my colleague the Minister for Health decided to abolish acute outpatient charges. All these are positive developments.

On screening strategies and where to go next, we took an important collective decision a number of years ago to establish the NSAC to bring in a level of expertise to examine, critique and decide what areas and diseases we should and should not screen for. I am sure the Deputy will be encouraged to hear it is proposed that genetic haemochromatosis will be considered by the NSAC. When that will happen in the committee's work programme is something it will keep updated on its website. The Deputy can receive updates from the NSAC in that regard. The outcome of this process will inform any further steps the Government may take.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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I thank the Minister. Is he dealing with the second matter?

Simon Harris (Wicklow, Fine Gael)
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I am doing them all.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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You are doing them all. Fair play to you.