Seán Power (Kildare South, Fianna Fail)

I am happy to have the opportunity to speak on this very important legislation. The Tánaiste has already explained in detail the provisions of this Bill and commended it to the House. As the Tánaiste said, officials have been in discussion with the four support groups on the details of the Bill and have taken their concerns on board. One of the issues raised by the support groups and which was also referred to by several Deputies was the matter of the ELISA test. As a result, the Tánaiste has decided to table an amendment on Committee Stage to extend the number of tests that can be used to determine eligibility to include RIBA and PCR tests. Like the ELISA test, the RIBA test is also used to diagnose the presence of antibodies to the hepatitis C virus while the PCR test identifies whether the virus itself is present in the individual's bloodstream.

In addition, to cater for the development of new and more sophisticated tests in the future, the Tánaiste intends to table an amendment that will allow her to make regulations adding new tests to the ones already specified. As Deputy Lynch mentioned, tests are developing rapidly and she expressed the wish that some new tests might appear in the near future. We are allowing for that should it arise. When the Tánaiste opened today's debate, she acknowledged the contribution of the four hepatitis C support groups — the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive — in working with officials on the details of the insurance scheme and thanked them for their significant effort in bringing matters to a conclusion. I reiterate the Tánaiste's sentiments and acknowledge the fine work done by the support groups, not alone in regard to this Bill but in representing their membership so assiduously over the past decade.

The Irish Haemophilia Society and the Irish Kidney Association were already in existence when the tragedy of hepatitis C afflicted their members. This gave both societies a new and tremendously difficult challenge to face in supporting their members, who not alone had to cope with the trauma of their underlying condition but had the added burden of another serious illness with which to cope.

Following the identification of the links between anti-D and hepatitis C in February 1994, Positive Action was formed later that year to represent the women infected with hepatitis C through the administration of anti-D. As information on the anti-D disaster became known, it became clear that the virus had been transmitted onwards via blood donations, and, as a result, Transfusion Positive was established in 1995 to represent the men, women and children infected with hepatitis C through blood transfusions administered within the State.

As we know only too well, hepatitis C does not respect age or gender. Those affected have included men and women, from the very young to the elderly and all ages in between. I am aware that State-acquired hepatitis C is often wrongly associated in the public mind as affecting women only. However three of the four support groups represent men as well as women infected with hepatitis C through blood transfusion and blood products, and their needs are always given due regard. The executive members of all four support groups have always striven to act as advocates on behalf of all the different strands that go to make up their membership, and have always been vocal in representing their interests.

From an early date the support groups entered into negotiation with the Minister for Health and Children and officials of the Department. It soon became clear they had a strong and coherent voice that needed be heard. During 1994 and 1995, Positive Action and Transfusion Positive were recognised formally by the Department as the main representative bodies for persons infected through anti-D and through transfusion respectively. That position remains unchanged today.

As the tragic effects of the hepatitis C virus became known and more sufferers were identified, the organisations' numbers grew. From the effects caused by hepatitis C came the solidarity of people supporting each other through adversity and working in the best interests of their relatives, friends and fellow members. The position of all four organisations was recognised when the Consultative Council on Hepatitis C was established in 1996, and all four were given a statutory entitlement to places on the council. From its first meeting in 1997 to its most recent meeting earlier this month, the support groups' representatives on the consultative council have worked tirelessly on behalf of their members to ensure their concerns were addressed.

The support groups did not confine their advocacy role to negotiations at the national level but undertook to represent their members in their dealings with regional and local services. At hospital and regional level the organisations have interacted with service providers to ensure the needs of their members are recognised and that services are responsive to those needs.

Transfusion Positive played a major part in lobbying for improved facilities for children with hepatitis C at Our Lady's Hospital for Sick Children, Crumlin, and this was acknowledged at the opening ceremony last year for the new medical tower at the hospital. To its credit, the organisation was always anxious to ensure that the very best facilities were available to all children with the virus, not only the children it represents. The dissemination of information to parents of children with hepatitis C has also been another area to which Transfusion Positive has made an invaluable contribution.

From 1994 onwards, Positive Action developed a strong and responsive organisational structure to support and represent its members. The organisation also developed effective lobbying skills and was instrumental in the establishment of the Finlay tribunal in 1996. The outcome of the tribunal led to a massive overhaul of the Irish Blood Transfusion Service, which is now at the forefront of international developments in transfusion medicine. It is a testimony to how far Positive Action has come and the high esteem in which it is held that its founder member, Ms Jane O'Brien, was appointed by the Tánaiste as a member of the board of the Irish Blood Transfusion Service.

The Irish Kidney Association was already faced with the enormous challenges posed by renal disease when some of its members were affected by the doubly cruel blow of infection with hepatitis C. Despite the thankfully small number of renal patients affected by the virus, the association from the beginning recognised the importance of providing professional counselling for this cohort and has been at the forefront of patient support and advocacy for its membership. In addition, the critical contribution of organ donation in giving new life to both renal and liver patients was always a particular focus of the Irish Kidney Association. Its chief executive officer is tireless in his efforts to promote organ donation awareness nationwide, not alone for the benefit of hepatitis C patients, but for the benefit of all those who need a transplant now or may need one in the future. The continued success of the Irish liver transplant programme, operated through St. Vincent's Hospital in Dublin, is a testimony to the sterling work performed by the Irish Kidney Association in promoting organ donation.

The special contribution of the Irish Haemophilia Society to the support of its members with hepatitis C cannot be over-emphasised. Nor can any of us comprehend the depth of the tragedy suffered by its members, having first become aware that so many of them were infected with HIV to then find that some were co-infected with hepatitis C. Others, having escaped the scourge of HIV, found they had instead been infected with hepatitis C.

The disaster which befell the Irish Haemophilia Society and its members has been well documented in the media and through the Lindsay Tribunal, but this is only part of its story. Most people will not be aware that despite, or perhaps because of the suffering they have endured, the Irish Haemophilia Society has played a major role in working to improve the lot of persons with haemophilia not alone in this country but around the world. The society is currently twinned with its counterpart in Bosnia and encourages other Western countries to participate in twinning arrangements with their less fortunate colleagues. The former chairman of the society, who for many years was also chairman of the World Haemophilia Federation, acts as a roving ambassador to haemophilia societies in some of the poorest countries in the world. He works tirelessly to assist them in gaining the most basic services for their members.

One of the hallmarks of all the support groups is the important role played by family members, sometimes as active members of the organisation or else providing invaluable support behind the scenes. Today, as well as acknowledging the role of the support groups, it is also timely to pay tribute to the families affected by the virus and to recognise the debt we all owe to these families. I hope the insurance scheme introduced in the Bill will go some way towards giving autonomy back to these families and allow them to avail of the mortgage and life assurance that are part and parcel of the essential supports every family needs to protect the financial security of its members on the same basis as the rest of the community.

First and foremost, however, the provision of this insurance scheme is a public acknowledgment of the needs and entitlements of the men, women and children infected with hepatitis C through blood and blood products. The credit for this must go to the chairpersons and executives of the four organisations, who have worked so hard and achieved so much.

There is no doubt this is an important measure that will provide support to people diagnosed with hepatitis C or HIV as a result of receiving contaminated blood or blood products from the State. For years it has been obvious that infected people's inability to buy life assurance and mortgage protection policies created additional difficulties to those they were already experiencing. The Bill addresses an inequity that has existed for several years. There has been criticism of certain aspects of the Bill but there can be little doubt that the scheme will be of great benefit to the persons infected with hepatitis C and HIV administered in State blood and blood products. I hope the amendments proposed by the Tánaiste will address some of the concerns expressed inside and outside the House in recent times.

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