Seanad debates

Thursday, 26 April 2007

Adjournment Matters

Hereditary Disorders.

4:00 pm

Mary Henry (Independent)
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I welcome the Minister of State to the House. Haemochromatosis is an hereditary and potentially life-threatening disorder which affects a considerable number of Irish people. While it can be asymptomatic for years, it has the potential in the absence of detection and treatment to cause death at a relatively early age. The condition is the most commonly inherited autosomal recessive disorder in the white population, with a prevalence of 0.2% to 0.5% in those of northern European origin, particularly Nordic or Celtic people, in whom it occurs with a prevalence of one in 200 of the population.

The condition causes the excessive absorption of dietary iron and a progressive increase in total body iron stores. The accumulation of iron takes place in the liver, the pancreas, the heart and the anterior pituitary gland, causing life-threatening conditions such as cirrhosis, diabetes, cardiac failure and arrhythmia, and cancer of the liver. Other manifestations include skin pigmentation, destructive arthritis and hypogonadism. Many people in Ireland find out they have hereditary haemochromatosis when they are diagnosed with another condition, for example, diabetes.

The risk of mortality increases rapidly in men over 45 years of age and women over 55 who suffer from this condition and who are not given treatment. The Minister for Health and Children set up a working group in March 2006 to examine the condition. This group, chaired by the former Senator, Dr. Maurice Manning, took a great deal of effort and reported rapidly, in June 2006. It was asked to establish the extent of haemochromatosis in this country, examine the possibilities of screening, consider the need for screening and its implications, and so on. The group concluded that, as one in every ten people here has a single mutated gene and one in every few hundred has two, screening to identify asymptomatic persons in whom iron indices are elevated by hereditary haemochromatosis should be recommended as a potentially cost-effective strategy for preventing hereditary haemochromatosis and associated morbidity and mortality.

A blood test is all that is required. If the transfer and saturation is greater than 45% most cases will be diagnosed. This has been shown to be effective in nearly 98% of cases in a country such as Australia. In chapter 3 of its report, the group recommends that funding should be made available immediately to screen 10,000 subjects in order to consider the issue in detail. A public awareness campaign of the condition should be also instituted and it was suggested the Irish Haemochromatosis Association could play a lead a role in this. It is also very important that the Irish College of General Practitioners should be involved in this education process.

People frequently visit their doctors suffering from lethargy or self-prescribe iron for themselves. As the Minister of State will know, lethargy is one of the symptoms of haemochromatosis but it is sometimes suspected the person has anaemia and iron is prescribed or is taken by the person, making his or her condition worse. Also, some people take iron-fortified food, not realising that this will have a deleterious effect on their health. It would be beneficial if the public were told about this as the disease would become better known. It was suggested that doses of iron over 60 mg should be made available by prescription only.

There are further recommendations regarding the prevention of discrimination against hereditary haemochromatosis sufferers by life insurance companies, where people have treatment and are then considered unsuitable for life insurance. If they are making an effort to address this life-threatening condition, they should not be discriminated against. It is suggested that the same should apply to health insurance policies. It was also suggested that the Voluntary Health Insurance board should be asked to review its policy whereby members who are diagnosed must wait for five years for cover for venesection, which is the treatment that is needed. Venesection is expensive. Rather than having either the VHI or the patient paying for this, the group also recommended it should be paid for by the State and carried out by general practitioners, which would mean hospital attendance would be avoided by these patients.

Only one recommendation has been brought forward and it is the only one which did not require action by the Department of Health and Children. One of the recommendations asked the Irish Blood Transfusion Service to review its policy regarding refusing to take blood from the venesection procedures that haemochromatosis sufferers must undertake. It has decided to have a pilot scheme in its Stillorgan centre to take blood from these people rather than having it wasted. As far as I can discover, that is the only recommendation that has been progressed.

When we debated today's motion on the commission to investigate the Leas Cross nursing home affair, I said it was fine setting up a commission but all I expected was another report on which nothing would happen. I have seen repeatedly in this House that reports are produced and we seem to think we have done something. Nothing happens unless we do something about the recommendations. We either dismiss them or we decide whether they are to be acted on. It is unfortunate that a committee that worked so rapidly and produced this excellent report has had its report sidelined in a similar way to all the other reports I have seen coming into this House in the past 15 years. I doubt if even 2% of them have been acted on.

Tim O'Malley (Limerick East, Progressive Democrats)
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I am taking this Adjournment matter on behalf of my colleague, the Minister for Health and Children, Deputy Harney. Early last year, the Minister established a working group to examine the nature and extent of haemochromatosis and to provide advice on the actions necessary to address the problems caused by the condition. The group, which was chaired by Mr. Maurice Manning, reported with 20 recommendations in June last year. Since then, progress has been made in a number of areas.

A key issue highlighted in the report was that blood from persons with haemochromatosis was not being used by the Irish Blood Transfusion Service, IBTS. The IBTS has re-examined its policy on this issue and has decided to establish a pilot venesection programme for haemochromatosis patients in one of its clinics. Subject to the usual screening protocols, blood from these patients will be used by the IBTS. A clinician has been appointed to one of the IBTS clinics to oversee the pilot programme.

Department of Health and Children officials contacted the Irish Insurance Federation with regard to problems some people had encountered regarding insurance once they were diagnosed with the condition. The federation has agreed to investigate any complaint about life or health insurance cover linked to diagnosis with haemochromatosis. Department officials met representatives of the population health directorate of the Health Service Executive last year to progress the relevant recommendations in the report, especially those relating to health promotion and awareness. Work continues in this regard and another meeting will take place in the coming weeks between senior management of the HSE and Department of Health and Children. The provision of appropriate venesection services will be a key issue for examination by this group.

The report was also sent to the Irish College of General Practitioners to ensure that general practitioners had up-to-date information on the matter. The Irish Haemochromatosis Association has also been in contact with the college. For its part, that association continues to increase awareness among both clinicians and patients of the issues related to the condition. On behalf of the Minister, I pay tribute to the association which has held a range of seminars throughout the country and has also updated a patient information booklet on the subject, which has been circulated to its 900 members. The Minister is confident that over the coming months, further progress will be made on implementing the recommendations in the working group's report.

Mary Henry (Independent)
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Once again, most of the action has been taken by bodies outside the House and the Department. I suggest it would be a good idea to work on getting the pilot scheme to the point where 10,000 people are screened.