Jerry Buttimer (Fine Gael)
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I welcome the Minister of State, Deputy Colm Burke. The first Commencement matter is in the name of Senator Martin Conway.

Martin Conway (Fine Gael)
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I welcome the Minister of State. For some time now inside and outside this House, I have campaigned for better support services for and better screening of haemochromatosis. We have had discussions here in previous Commencement matters on the need for a national plan or strategy to deal with haemochromatosis. I have facilitated briefings within the House for staff and Members from the Irish Haemochromatosis Association. For those people who do not understand what haemochromatosis is, it is when your body takes in too much iron from the food you eat and in order to alleviate that iron it has to be removed from your bloodstream. Periodically, people who have haemochromatosis have a pint a blood removed from their system in order to reduce their iron to a more acceptable level so it is not a threat to their health.

In various parts of the country, the supports are mixed and varied. In some regions of Ireland, the supports are very good. In other regions of Ireland, they are not so good. I have long campaigned for free care for people who suffer from haemochromatosis. People who need blood taken for that reason should be able to have it done in a convenient way that does not cost them anything and in a way that is easily accessible. That is the one way haemochromatosis is treated. A former Leader of the House and Senator, Maurice Manning, has campaigned for many years on this issue because he has haemochromatosis. I acknowledge the work he does in this area.

We need screening and a national screening plan. We also need better access to care. We need an awareness campaign so that people are aware of what haemochromatosis is, how it can be diagnosed and what things people need to watch out for. It can be hereditary; in those instances people will be more aware than they would be otherwise but people can pick it up for a whole myriad of different reasons and that is why the Government needs to start taking it more seriously. We need to have a national strategy and I hope today the Minister of State might have an update in that regard. I want to acknowledge the improvements that have happened in the last two or three years in this area but clearly, a lot more needs to be done. I look forward to hearing the Minister of State's update to the House on what is happening to support the people in this country and the citizens of Ireland who have haemochromatosis.

Colm Burke (Cork North Central, Fine Gael)
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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.

Martin Conway (Fine Gael)
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I accept that much progress has been made, in no small part due to the people who have campaigned and stuck at it over the years. I also accept that the outpatient charges have been dealt with. We need to move to a situation where no haemochromatosis patient should have to be treated in hospital. Outpatient services are under enough pressure. This should be dealt with through the Irish Blood Transfusion Service, which would be the most acceptable model, unless there are very specific reasons not to do that.

The hereditary screening programme has been deferred due to new evidence. I would like to know what that new evidence is, why this has been deferred and how long it is going to be deferred. It is extremely important that hereditary haemochromatosis is screened for and that people who are at risk as a result of their family tree are screened as a matter of form, in a convenient way that does not cost them anything and encourages them to be screened. I cannot understand what the new evidence is. There may be new evidence that I am not aware of but I would be interested to know why the new evidence is going to delay the decision on a screening programme.

Colm Burke (Cork North Central, Fine Gael)
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In fairness, following the changes that have occurred in the past three or four years, many people who were going to hospital are now going to their GP, which is a major improvement. In addition, because of the extension of the GP card criteria, many more people are able to attend their GP without having to pay a charge.

The Minister for Health is committed to the delivery of treatments to patients with hereditary haemochromatosis in a fair and equitable manner. The Minister understands there may be some disappointment with the current position regarding screening for hereditary haemochromatosis. However, it is important to emphasise that any recommendations the committee makes are based on international processes and best practice, along with scientific evidence. Ireland has always evaluated the case for commencing a national screening programme against internationally accepted criteria. The policy measures introduced in recent years, such as the expansion of the GMS contract and the abolition of inpatient charges, are enabling more patients to receive their treatment free of charge and with greater flexibility.

These measures are in line with the Government's overall vision for healthcare in Ireland as set out in the programme for government. More precisely, they aim to facilitate universal healthcare through a public health service that enables people to access high-quality, affordable care when they need it.