Seán Ó Fearghaíl (Kildare South, Fianna Fail)

-----that a high-quality dedicated support system is now in place across the country, with St. Vincent's hospital at its centre. In light of calls for more localised provision, we do need clarity, and I urge the Minister and the HSE to address this matter as soon as possible.

In Ireland we have a frighteningly high incidence of this condition. One in 19 people is a carrier, and a child of two carriers has a one-in-four risk of symptomatic illness. The incidence in Ireland is approximately one in every 1,400 babies born. This compares with an incidence of one in 4,000 in the United States; incidentally, the incidence among the Asian-American community is just one in 32,000. The statistics serve to illustrate that this illness must be prioritised in terms of health policy. Due to the high incidence of the condition, we need not just to support sufferers but to build on the expertise developed in this area and work to make Ireland a centre of excellence in the area of CF research and patient management. Already the HSE has funded the development of a CF register to record relevant data which could be put to such use.

With this condition, early diagnosis is key to achieving optimal care and outcomes. Many countries are now implementing neo-natal screening, often included in the Guthrie heel-prick test. This can provide a diagnosis within the first week of life, as opposed to some unfortunate circumstances in which a child could be of school-going age before diagnosis is confirmed. In such cases valuable time has been lost where early aggressive management could have been initiated. It is important, therefore, that we move rapidly to the point where we have universal routine screening for CF at the neo-natal stage. In addition, this early diagnosis would offer parents the opportunity to seek genetic counselling at a much earlier stage than might otherwise be the case.

As with any illness, there are three aspects to patient care which need consideration; namely, the physical, psychological and social elements. As politicians the greatest impact we can have is by ensuring that an appropriate and safe environment is provided to minimise the exposure of susceptible patients to potentially life-threatening infections. Hence the need to proceed urgently with the delivery of the specialised units. The psychological well-being of a person is as important as his or her physical health. A child with CF can feel isolated, as can any child with a significant chronic illness, due to prolonged hospital stays. The childhood of those with CF tends to be shorter than most because of the realities of serious illness. Teenage years are difficult at the best of times, but for the CF patient there is the added realisation of premature mortality. It is essential, therefore, that we provide the necessary psychological and counselling supports and ensure an environment exists in which CF patients can live their lives to the full and realise their true potential.

We know the impact of this disease on patients' loved ones, and we therefore acknowledge that the introduction of the dedicated units will at least significantly reduce the fear that is currently associated with hospital admissions and the risk of hospital-acquired infections. In the pioneering manner in which the Minister, Deputy Harney, is proposing to address this matter, the Government is demonstrating, as it must, a true and tangible commitment to giving CF the high priority it deserves.

It would be remiss of me not to pay tribute to the young Kildare woman Ms Orla Tinsley, whose courageous campaigning and highly effective communication skills have resulted in unprecedented levels of public and political awareness of CF, to the benefit of sufferers throughout the country. In doing so she has by her personal example demonstrated to other people with this condition how substantial their personal achievements can be. She has also shown young people in general what can be achieved by targeting their energy, ability, idealism and clarity of thought towards issues of importance in our society. I commend the Minister on her pioneering action and I commend the amendment to the House.

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