Dáil debates

Friday, 30 June 2006

Hepatitis C Compensation Tribunal (Amendment) Bill 2006: Second Stage (Resumed).

 

The following motion was moved by the Tánaiste and Minister for Health and Children on Thursday, 29 June 2006:

That the Bill be now read a Second Time.

Debate resumed on amendment No. 1:

To delete all words after "That" and substitute the following:

"Having regard to the fact that the Bill contains matters unrelated to the issues that were the subject of extensive discussions with interest groups representing affected persons and the additional matter adversely affects the interests of those persons and having regard also to the failure of the Minister for Health and Children to publish an explanatory memorandum outlining her reasons for including the additional matter, Dáil Éireann declines to give a second reading to the Bill.".

—(Deputy McManus).

10:30 am

Photo of Dan BoyleDan Boyle (Cork South Central, Green Party)
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I appreciate the opportunity to speak on this important Bill. The controversies that have surrounded the transmission of hepatitis C will, in the future, be seen as one of the more significant events and the political system and the administration in this country will be seen to have failed so many of our citizens. The State and its various agencies, through incompetence, inefficiency and, sadly, indifference, affected the lives of so many people, many of whom died. Thousands have been affected in that their quality of life has been irredeemably changed. That reflects badly on Governments but also on our political system. Ever since information on the extent to which this condition was affecting so many people become available, its handling has been at best inept and, sadly, mostly insensitive. Political reputations have suffered as a result but that means nothing compared with the effect on many thousands of people affected with this condition, some of whom have died.

It is with great sadness that we consider the Bill presented by the Government. The Bill was meant to fill in the remaining gaps, which have been left for far too long. Despite that timelag, the Bill presented is deficient in so many ways. Government contributions to the debate to date have taken two characteristics. The contributions of the Tánaiste and two Ministers of State seemed to follow a set line. There was a renewal of the apology to the victims of hepatitis C in respect of the form in which the condition was transmitted. They also stated that the Government had done so much in regard to this issue over the past nine years. There was a degree of self-congratulation there. They further stated what they hoped to do with this Bill and explained what to many of us in the House believe is utterly inexplicable in terms of meeting the commitments to this disadvantaged group in our society.

Government backbenchers, while supporting the Tánaiste and Ministers of State, seemed to have no compunction about saying they also supported the campaigning groups in this area. Press statements were read out in regard to the statements made by the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive. These Government backbenchers have asked that certain actions be taken.

Since all Stages of the Bill are being taken over these two days, we now have a list of the amendments the Government intends to make. The amendments are very slight and one has already been flagged by the Minister of State, Deputy Seán Power, in that the Government will not rely solely on the ELISA test but will also rely on the RIBA and the PCR tests. There has been no give on the Government's part in terms of maintaining consistency in respect of confirmation of HIV by medical practitioners as has been the case in the past and in the tribunal. The only other amendment tabled by the Tánaiste which is in any way compensatory takes an almost Fianna Fáil approach to issues such as this one — it treats everything that happened in the past as being in the past and it will apply the new sets of criteria to the future. That is what is upsetting many of the campaigning groups because this concerns not only those who have lived with this condition but others who will suffer in the future.

The issue of consortium was spoken about at length. The Minister of State, Deputy Brian Lenihan, seemed to have great difficulty believing it was a difficult issue. As Deputy Lynch said, the nature of the society in which we live will mean that people will establish relationships in the knowledge that one of those involved suffers from a condition which may be transmitted.

It is hard to understand why the Tánaiste has introduced this legislation. It is a great irony that once again in a Fianna Fáil-led Government, the issue of haemophilia seems to be creating a huge blind spot in terms of how people in our society who suffer from it should be treated. In 1989 the issue of granting £300,000 or £400,000 to meet the needs of haemophiliacs resulted in the then Taoiseach, the late Charles Haughey, going to the country. The Government would not want this Bill to fail as it would then have to justify it at a general election. When the Government presents the issue as being the rights and entitlements of people living with this condition, it is obvious it does not do so on the basis of meeting their needs but of avoiding, as other speakers have noted, the appalling vista of unending costs which is envisaged by the Government and the officials of the Department of Health and Children. This should never be our approach to an issue of this type.

My party's spokesperson on health, Deputy Gormley, has tabled three amendments, which are shared with other Opposition spokespersons. I hope Government backbenchers in particular will pay attention to these amendments, which propose that sections 1, 2 and 6 be deleted. These sections are particularly contentious and the campaigning organisations find it difficult to understand why they were included.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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That is correct.

Photo of Dan BoyleDan Boyle (Cork South Central, Green Party)
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If the Government wants to save face on this issue or if it believes it can finally present itself in a morally upright way, these amendments should be accepted. However, that is not likely to happen given that the Minister's amendments as presented to us contain nothing of that type.

To return to the central issue of why this Bill is so offensive to many who are suffering from hepatitis C and living with its effects, it is because of the act of justifying the condition through the existence of the ELISA test and the two other tests that can be taken in preference to it. Like most Members, I do not have a medical background and had to resort to a web search to find the definition of ELISA. I feared it was not an acronym but was named after a character from George Bernard Shaw's "My Fair Lady". However, it is an acronym, which stands for enzyme-linked immunosorbent assay. The website on which I found this information explained how the ELISA test is used and whether it works. It explained the advantages of ELISA. What struck me was that the website stated: "ELISA tests are generally relatively accurate tests". If that sentence is not couched in equivocation, I do not know what is.

The Minister suggests——

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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The Minister states it is an absolute.

Photo of Dan BoyleDan Boyle (Cork South Central, Green Party)
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——that this test will prove once and for all whether a person has hepatitis C but this test is more often used for HIV. On those grounds, I cannot understand how this system, given the indignity it will cause people in having to justify their condition, is any better than the current system of having their condition analysed by medical practitioners. It is as if the Government would prefer to take a technological route, not to prove a point but to disprove a point. It is that degree of bad faith the Government must address.

I was struck by a remark in the Tánaiste's opening speech in this debate that: "The introduction in the Bill of an insurance support scheme on a statutory basis shows the continued commitment of the Government to working with the victims of infection to provide all possible supports to them." That is inherently not true. The Government's commitment is qualified. It has not engaged in appropriate consultation. Its proposals are inherently flawed and meet with massive rejection from those who live with this condition and campaign to ensure proper restitution is provided. Despite this, the Tánaiste believes the Bill will fill the remaining gaps.

What I found particularly disappointing about the Tánaiste's speech, and the subsequent speeches of other Ministers, was that it was big on the detail of the nature of the problem and the contents of the Bill but made no reference to the "why". Many Members on this side of the House and many people outside the House are still awaiting an explanation. Why has the Government proposed this measure? Why does it feel the need for qualification? When will we get a sense that the Government is acting from the best of motives? On those grounds, the Government must use the opportunity presented by the remainder of the debate to answer those questions.

Reacting to the Tánaiste's statement, the campaigning groups issued a press statement yesterday which indicates the degree to which these organisations remain unhappy with what was stated. That unhappiness will be intensified when they read the amendments to the Bill tabled by the Tánaiste on behalf of the Government. The press statement suggests that the real anger that continues to exist results, first, from the fact that highly suspect information was read into the record. Faith is being put in the ELISA test that cannot be justified technologically and references were made to the Finlay report which misrepresent the meaning of the report and why the original reference to the ELISA test in the 1995 draft legislation was dropped from the legislation.

The groups also refer to the opinions of consultant hepatologists. In a discussion of scientific and medical issues, it is unfortunate that, as lay people, we are not getting that informed level of debate in the House, other than from Members who are general practitioners. Nonetheless, members of the Opposition are informed that there is expert opinion that justifies many of the concerns we are expressing, and it is arrogant of the Government to choose to ignore that opinion.

The press statement emphasises the sadness as much as the anger felt by the four organisations. The groups believe that, regrettably, the Tánaiste appears to be unwilling to accept that she has been poorly advised about this most sensitive issue, which involves victims of State negligence being excluded from compensation on the basis of an arbitrary test. The word "arbitrary" is important in this context because the presentation of the Bill seems arbitrary in itself. It seems to be a whim or some type of wheeze at civil servant level that these types of qualifications must exist because, if they do not, what happens in the future will be unacceptable to the State's purse. The statement also refers to the support that has been given to the organisations, mainly from this side of the House.

I will conclude as I began by referring to the series of hepatitis C scandals and the fact that they have impacted heavily on political reputations in particular. Earlier in the debate we heard the contributions of those who in the mid-1990s were Opposition spokespersons and who expressed a sense of outrage and demanded that matters be handled properly. This is an issue which all Members feel should be exempt from political point-scoring. The hope should be that the House collectively can agree the Bill, taking into account the reservations expressed by those who will be affected by its implications. If we cannot do that, we are failing not only those people but all in the society we represent.

11:00 am

Photo of Charlie O'ConnorCharlie O'Connor (Dublin South West, Fianna Fail)
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I welcome the opportunity to contribute to the debate. My good friend, Deputy Boyle, has put his finger on the issue. I mentioned to the Minister of State, Deputy Tim O'Malley, that while I have spoken on many issues since I became a Deputy four years ago, this issue in particular has caused me considerable distress. I went about my business in a normal way yesterday, attending to matters in my constituency, coming to the House and dealing with constituents who contacted me about routine issues such as broken street lights, social welfare entitlements, housing and so forth. I also received calls of a different type on the issue under discussion.

I was especially struck by an e-mail cited by Deputy O'Sullivan in her contribution which I listened to carefully. It was sent from one of her constituents in Limerick but could just as easily have been sent by one of my constituents in Tallaght. Yesterday, I was approached in the Visitors Gallery by a constituent from Balrothery in Tallaght who pointed out that while she was not directly affected, she had friends who were infected by contaminated blood products. She expressed her thoughts to me in that regard.

All Deputies have views on this matter and it should not be presumed that Government party Members are any less sympathetic than others. This issue involves people who have been upset by actions of the corporate State. I listened carefully to Deputies' contributions on the Bill yesterday and carefully read correspondence from the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive. Some of my colleagues received headline coverage for points they raised with the Tánaiste and Minister for Health and Children on this issue. I hope that, as the day wears on, the Tánaiste and her Ministers of State will consider the arguments made by Deputies on all sides.

Communication has been lacking and I hope the Tánaiste will find time to meet representatives of the four organisations which issued an important policy statement to all Members this week to discuss outstanding issues and decide how to proceed. I am always happy to engage in political debate but, as my Green Party colleague, Deputy Boyle, noted, this is a different type of debate. I hope the Tánaiste will understand the sensitivities of the issue about which we are all concerned. I do not want to defend, either in my constituency or elsewhere, something which will greatly upset people.

This is a particularly important debate which arises from an announcement made by the Tánaiste on 20 June in which she publicised a Government Bill to establish a statutory scheme to address the insurance difficulties faced by people infected by hepatitis C and HIV through contaminated blood products. It is important to provide further support to individuals diagnosed with these conditions as a result of contaminated blood products.

Over the past nine years, some of those affected, through no fault of their own, have been unable to buy life insurance or mortgage protection policies, thus adding further problems to the damage they have already suffered. The Bill will deal with the proposed forms of recompense and compensation, the special health card and life insurance support. It is intended that it will allow for the development of a scheme of travel insurance and it is hoped the people affected will be able to take full advantage of the Exchequer funded scheme. I ask that particular consideration be given to the fact that we have failed to get our message across to the people who have been affected by this issue.

This debate has attracted significant national and regional attention. I note the Visitors Gallery is full again, which is not always the case during debates. To see so many people, presumably from around the country, listening to a debate in the House highlights the importance of the issue before us. I am not afraid to admit that this legislation creates problems for many of us and while I will not shirk my responsibility, I will also express my concerns and raise the sensitivities surrounding this case.

I do not always listen to debates in the House but I listened to many of the contributions on this Bill yesterday. People often ask why the Dáil is not full and where all the Deputies are during debates. We sometimes respond defensively by pointing out that Deputies from all sides work in their offices, take telephone calls, attend committee meetings and so forth. While people may have a different impression, as I speak, many of my colleagues are in the House attending to other matters.

I was anxious to hear the views of colleagues on this matter. I have already mentioned several Deputies' contributions and do not wish to patronise my colleagues but I was struck by many of the comments made yesterday. I acknowledge the pain and suffering inflicted on upwards of 1,700 citizens who have been infected with hepatitis C and HIV through the administration of blood and blood products. This is an emotive issue and it is important that Government colleagues understand that the State must make every effort to provide whatever supports possible to the victims and their families. This issue has affected many people and attracted widespread attention. Yesterday, my son Robert told me about friends of his whose family members have been affected by this problem. People are clearly upset and traumatised by what has taken place.

The Tánaiste's intention is to enact legislation which will establish the third of three forms of support for infected persons. The first support is the compensation available through the hepatitis C and HIV compensation tribunal which has, to date, made awards to more than 2,200 people. The tribunal was placed on a statutory footing nine years ago and allows people to make claims for compensation in a non-adversarial fashion. I understand claimants may also appeal their awards to the High Court and that the persons infected and their spouses, partners and next-of-kin have been presenting their claims to the tribunal since it was established. I am informed the total costs incurred by the tribunal by the end of 2005 amounted to €660 million. As Deputy Fleming indicated last night, this figure includes legal costs, fees and administration costs, and an amount of €580 million in awards.

I listened carefully to Deputy Fleming's contribution, for which Deputy Lynch was present, when he drew on the experience of the all-party committee that examined this matter. We all sympathise with the point he made about legal persons making money from this process.

The second support is the special health card, the Health (Amendment) Act card, which entitles the holder to a range of health care services. Health care costs under the Health (Amendment) Act amount to approximately €15 million per annum. I understand that in 1998 the expert group on hepatitis C, which is chaired by the chief medical officer of the Department and includes representatives from leading consultants and a member of Positive Action, agreed that eligibility for the card should be on the basis of a positive diagnostic test for hepatitis C. I was glad to hear the Minister confirm that the Department has prepared a detailed guide to the services available under this card. I received a copy of it. The services include hospital and primary care services and home support, and this year a new home nursing scheme is being piloted in the east. The representative groups are involved in shaping the development of all services to ensure they meet their needs.

It is important that the Department understands the need to continue to work with these groups. That is why I have already expressed upset that there is a lack of co-operation between the four groups, the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive. I am glad to note the presence of my good friend, the Minister of State at the Department of Health and Children, Deputy Tim O'Malley. He, the Tánaiste and the Department should understand that this issue crosses our desks and people ask us to represent it to the Department. It is important that Department officials meet the groups and I hope that can be done quickly.

The third support will be life assurance support. This will cost approximately €90 million over the lifetime of the scheme, which I am told will be at least 30 years. The proposed scheme could be summarised as follows: the State pays the additional risk premium where the insurer is willing to provide cover subject to an additional premium, and where the insurer is not willing to provide cover, the State assumes the risk on the life cover. I am told that in each case, the person requiring life assurance will pay the average basic premium an unaffected person of the same age and gender would pay. The scheme will be available in respect of all standard life assurance policies offered by insurers who are authorised to transact life assurance business in Ireland and who opt to participate in the scheme. Those who wish to participate in the scheme would enter into an agreement to abide by the rules of the scheme, which would also provide for an appeal in the event of a dispute. The scheme will be administered under the aegis of the Health Service Executive. Specific details of the administration of the scheme will be set out in regulations and an administrator will be recruited as soon as possible after enactment of primary legislation. It has also been agreed that a travel insurance scheme will be developed within six months of the commencement of the main scheme.

We should mention the genesis of this situation and the improvements in the Irish Blood Transfusion Service. The tragic infection of blood and blood products took place 30 years ago. I remember the year well because it was the year my mother died and the years tend to stick in one's mind for many reasons. I sometimes say that I bring to my politics my life experiences. I remember that year and the issues on blood and blood products. It also happened in 1991 and 1994. Since then, every effort has been made by the State to recompense the victims of this a terrible scandal.

A multi-million pound investment programme was approved in the late 1990s to support the reorganisation and redevelopment of the Irish Blood Transfusion Service nationally. The primary objective was to ensure the organisation was resourced to provide a transfusion service in line with best international standards. Significant additional resources were made available to the organisation to support the provision of a new national headquarters, development of a new components processing laboratory and other improvements at the Cork centre, implementation of a new information technology system, the introduction of new technologies, efforts to improve the safety of the blood supply and additional senior staff appointments, which have resulted in the establishment of new personnel and finance departments.

The Irish Blood Transfusion Service has introduced major new testing programmes in advance of most other transfusion services internationally and continually monitors international developments such as guarding against emerging threats, such as variant CJD. All these developments will contribute to a modern, safe and efficient blood transfusion service to meet the demands and challenges of 21st century Ireland.

We should all understand the importance of the blood transfusion service. I am not afraid to repeat that I had a heart attack in 1999 and I always appreciated what was done by the medical and blood transfusion service. Through that episode I got an appreciation of the importance of these services. I can only imagine the effect this scandal, and the response to it, had on many families.

Since the introduction of regulations to transpose a European directive on quality and safety of blood products, the activity of blood banks and blood establishments must be authorised by the Irish Medicines Board. I am told that strict standards must be in place on the collection, testing, processing, storage and distribution of human blood and blood products. I am glad to see penalties are imposed on facilities that do not comply with those regulations. It is important that the Tánaiste and her Ministers of State understand that the significant funding that has been allocated to ensure compliance with statutory requirements would receive broad community support. I am confident this will continue to result in improved hospital systems and traceability of the blood transfusion chain.

I will continue to listen to the contributions on this issue and I appeal to the Minister to emphasise to the Department the importance of this debate, of listening to all sides and of understanding the interest expressed in the subject. It is important that we understand that the infection of people with contaminated blood products was devastating not only for those immediately involved and their families but for the wider community.

As I go about my business in my constituency, Dublin South-West, people talk about this. Yesterday I was here until 8 p.m. to listen to the Minister of State at the Department of Health and Children, Deputy Brian Lenihan, and then returned to my constituency. At my clinic and at a function I attended in the Women's Educational Project in the Shanty in An Cosán in Jobstown, women raised this debate and expressed their concerns. While no compensation can repair the damage, I hope the Government's responses I have mentioned are proof that as much as possible is being done to deal with this terrible situation. I hope, as the day wears on, some consideration is given to the points being made on all sides and that Committee Stage will reflect the debate and how people from all parts of the country representing their communities have made their points. I hope the Tánaiste will allow some amendments that will reflect this.

I have given serious thought to this upsetting Bill, in respect of what it tries to achieve and how we represent people. I hope that will be reflected in the Bill. People would want us to take the advice of the last speaker on going about our business in a non-confrontational way without political points scoring.

Photo of Fergus O'DowdFergus O'Dowd (Louth, Fine Gael)
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It is not right that this Bill be rushed through the House when we are about to break up for the summer recess because to achieve good legislation, we need proper and adequate reflection after the Second Stage debate and on Committee, Report and Final Stages. This is one of several Bills which the Government is ramming through at the last minute before the recess. We ought to have longer sitting hours and to be here for much longer than the Government plans to tease out the issues and make proper legislation. The views of interest groups should be taken on board such as those in this case whose lives have been so appallingly affected and who have been so grievously and horribly wronged by the State. They should not be again put through the trauma, frustration and worry caused by this debate.

The Bill has come from the Department of Health and Children but Fianna Fáil cannot escape responsibility for its content because it had to be cleared by the Cabinet and discussed by the Fianna Fáil committees. There is no point in having mighty men as Fianna Fáil or Progressive Democrats backbenchers who are strong and forceful outside this House but are like poor church mice when in it. They fall silent and will not vote against this Bill which is so unacceptable to the victims of this scandal.

The Minister of State at the Department of Health and Children, Deputy Tim O'Malley, is rushing this ill-prepared legislation through. His party is locked in a power struggle over who will lead it into the next general election or whether another candidate might be an acceptable face for the party. It has lost the plot and is losing the interest of the people. The party and the Government, which no longer has a mandate, are riven with strife. They are unable to face the reality of the community and people they claim to represent.

We all learned a great deal from the hepatitis C scandal in the past but this Government has learned nothing. Once again these people are being dragged into this Chamber and their lives and trauma being thrown from one end of the House to the other by a Government which has not listened to, and will not agree with, the views they have expressed so clearly and strongly.

The Minister for Health and Children, yesterday in the Dáil and last night on the "Prime Time" programme, misrepresented the opinion and views of legal experts given to the Department. The legal opinion of John Rogers, senior counsel, has come into my possession. This opinion was given to Positive Action on the Hepatitis C Compensation Tribunal (Amendment) Bill 2006 yesterday:

The Tánaiste and Minister for Health & Children informed Dáil Éireann today that Positive Action had many years ago submitted a draft Bill to the then Minister for Health which contained a provision that a positive ELISA test be a criterion to identify persons who had been infected with Hepatitis C virus.

It appears the Tánaiste has raised this point with the purpose of demonstrating that Positive Action are misguided in their opposition to the Tánaiste's proposal to amend Section 1 of the Hepatitis C Compensation Tribunal Act, 1997 so that a person will not be diagnosed positive for Hepatitis C for the purposes of the Act unless the diagnosis is based on a positive test result arising from the enzyme-linked immunosorbent assay or the person displays symptoms of acute infection by reference to the presence of jaundice, or raised alamine animotransferase (Alt) levels, not later than sixteen weeks after the person has been administered Anti-D.

The reference to enzyme-linked immunosorbent assay is a reference to the ELISA test.

I understand separately that there are new amendments before the House today in regard to other tests, with which Deputy Twomey will deal on Committee Stage. The legal opinion continues:

The proposed amendment means that a person would not be entitled to succeed in a claim for compensation before the Compensation Tribunal unless that person could show they had had a positive ELISA Test or that they had had jaundice or raised Alt levels during the sixteen weeks after the person had been administered Anti-D.

There is a real danger that to exclude a person who cannot show a positive ELISA Test will give rise to injustice. There have been cases before the Tribunal since 1997 in which the issue of the adequacy of the ELISA Test as a diagnostic tool has arisen. For instance in a case which I will refer to as "C" which was heard by the Compensation Tribunal on the 2nd of December 1998 Doctor Graham Foster, consultant hepatologist, who was giving evidence on behalf of the applicant, was asked by Counsel:

"Again looking at what we would call the antibody tests and we have been through a range of them here; one is the Ortho and the other is the ELISA and we have had many of them over the period. Can you assist the Tribunal as to what a positive or a negative antibody test means?"

To this question Doctor Foster answered:

"I think again it is a question of level and cut off. What happens in the simple ELISA is that patient's serum are allowed to bind to Hepatitis C proteins and the level of binding is then assessed. Whether that is positive or negative depends on a cut-off value and the cut-off value is defined at the level at which the vast majority of people who have active Hepatitis C have a number greater than that, and the vast majority of people who do not have active Hepatitis C are lower than that. So, there is clearly a fixed cut-off level.

Again to say there is no antibody present simply means that in this individual the level of antibody is less than that found in the majority of patients who have active Hepatitis C. Again to extrapolate from that, I would argue that in patients who have been exposed to the virus, there may well be low levels of antibody that don't reach the level of the cut-off in the standard tests."

It is noteworthy that in the "C" case in which Doctor Foster was giving evidence the Tribunal relied on a clinical diagnosis and found that:

"The tests as have been carried out since the 1990s have been inconclusive but we are satisfied that she was exposed to the virus".

The Finlay Report was submitted to the Minister for Health in March 1997.

It is noteworthy that Mr Justice Finlay appended to his report the answers to certain questions that had been submitted by him to the Blood Transfusion Service Board and the answers to these questions are found at Appendix G. The first question was:

(A) How many persons were infected with HCV as a result of receiving the 1977 infected anti-D?

The answer given was to the effect that 704 persons who received the 1977 infected anti-D showed evidence of past or current infection on a laboratory screening. It was stated a further 53 show a RIBA reaction in which HCV antibodies were not confirmed but which the BTSB then thought was either evidence of cleared infection or falsely positive reactions. The BTSB said this would require further study.

What is important is that the BTSB were then careful to qualify their observations in relation to the number of persons who are infected by saying:

"However, we now have evidence that it is also possible (although apparently rare) for a person to be infected and subsequently lose both detectable virus and indeed detectable antibodies. This happened in the case of donor Y. While we have no laboratory means of identifying these persons, we have, however, taken a history of symptoms or signs from those who received BTSB anti-D. We are thus aware of 74 recipients of 1977 anti-D who had an episode of jaundice at that time which is most likely to be related to exposure to Hepatitis C. As these persons do not show any reaction on laboratory tests for Hepatitis C an epidemiological study is planned to investigate transient infection which has subsequently cleared."

It is clear from this that the BTSB itself was not happy about reliance upon the screening tests such as ELISA. Further, the fact that the infection of some persons was detectable by virtue of they having experienced an episode of jaundice clearly shows that clinical diagnosis is a valid method by which to determine whether a person has been infected with Hepatitis C.

The draft Bill to which the Tánaiste referred this morning [and again last night on "Prime Time"] was prepared and submitted by Positive Action to the then Minister for Health in September 1995 which was before the Finlay Report and before it was known to Positive Action and their advisers that there was "evidence that it is also possible (although apparently rare) for a person to be infected and subsequently lose both detectable virus and indeed detectable antibodies".

This position as advised by the BTSB to Mr Justice Finlay was confirmed later by the evidence of gastroenterologists and hepatologists before the Compensation Tribunal and I point particularly to the evidence of Doctor Foster when he said "there may well be low levels of antibody that don't reach the level of the cut-off in the standard tests".

In short, the Tanaiste appears today [yesterday] to have relied on a draft Bill prepared for Positive Action and submitted by them to the then Minister for Health in September 1995 long before the Finlay Report made it clear that there were anti-D recipients who had suffered virus infection who lost both detectable virus and indeed detectable antibodies but in respect of whom clinical diagnosis was capable of confirming infection had in fact occurred.

Should further clarification be required I will be available.

John Rogers.

The issue is very clear. The reality is that the Minister for Health and Children, the Department of Health and Children and the Government have got it entirely wrong. It is clear that the families in question have been absolutely wronged by the Government's actions. The Government backbenchers who are making so much noise about this issue clearly will not vote against this Bill because they do not have the guts to do so. They cannot be in opposition and in government at the same time. I challenge the sweet 16, who are mighty men in the press and church mice in the Dáil, to vote with the Opposition to remove the amendments which are unacceptable to the victims of infection.

A human tragedy of vast proportions, which has destroyed lives and families, is central to this issue. It is unacceptable that the Government, rather than supporting all those who are condemned to a life of worry about their health, is trying to exclude some of them from this scheme. That is what will happen, however, if we rely on a single test and ignore the evidence of other tests, which is that more people might be entitled to make a claim. The Government wasted over €50 million of taxpayers' money on voting machines and further millions on PPARS. It is spending money here, there and everywhere. There is great concern at the heart of our society that the victims of this scandal should be properly and adequately compensated. Perhaps "adequately" is the wrong word to use because the people in question can never be compensated for the wrong that was done to them. They should not have to endure this trauma and worry.

Given that she has been in the Oireachtas for over 25 years, the Minister for Health and Children should know much better. The Government, which has been in power for 18 of the past 20 years, is rushing bad legislation through the Dáil today. It is unacceptable that it is continuing to make the victims of this scandal suffer as a result of the scourge of its inactivity and its lack of care, sensitivity and concern for the needs and feelings of the victims and their families. The country is united in its conviction that this legislation needs to be changed today. The Government must meet the needs of the families in question. It has shown a shameful disregard for people who are really suffering at the hands of the State. If any money should be spent and concern should be shown, it should be shown for the people to whom I refer. It is obvious that no money will meet all the needs of the victims and their families, who will continue to suffer. It is not a question of compensating the victims for what has happened, but of helping to meet some of their needs and alleviate some of their worries. The money will be helpful for their families in the future, after they have passed on. The Minister of State has a few hours to decide to make some changes to this legislation. The Government and its backbenchers need to get their act together. It will not be acceptable if they get away with this.

Tim O'Malley (Limerick East, Progressive Democrats)
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The proceedings in the House yesterday and today have reminded Deputies on both sides of the House of the tragic events of the years leading up to the mid-1990s, when more than 1,700 people became infected with hepatitis C and HIV as a result of the administration within the State of infected blood and blood products. Nothing can make those men, women and children well again, or erase the pain and suffering of them and their loved ones. Since this tragedy unfolded, the State has tried to do everything possible to support the victims of infection. The enactment of this Bill, which will result in the establishment of an insurance support scheme for persons with hepatitis C and HIV, will be a significant development. It will address a major obstacle that has been encountered by the people in question as a result of their infection.

I wish to correct some statements made by Deputies last evening during the speech made by my colleague, the Minister of State, Deputy Brian Lenihan. There appears to have been some confusion as various figures were quoted for the awards which have been made by the compensation tribunal. I wish to correct the record in this regard. The total cost of the tribunal to the end of 2005, including legal costs, fees and administrative costs, was over €660 million. The actual amount of the awards was almost €580 million. A Deputy questioned the accuracy of these figures, but I assure the House that the figures are correct.

The infection of people with contaminated blood products was catastrophic for them and their families. While no monetary support or compensation can repair the damage that was done, the State's response, by establishing the compensation tribunal in 1997, making available the Health (Amendment) Act card in 1996 and now introducing an insurance support scheme, means that Ireland is doing more for victims than other countries in similar circumstances. The Government has taken a human and supportive approach to the victims of infection. Despite the fact that Ireland is the first country to introduce an insurance support scheme, Opposition Deputies have said this legislation is very restrictive. Officials from the Department of Health and Children have worked closely with the four support groups, the Irish Haemophilia Society, Transfusion Positive, Positive Action and the Irish Kidney Association, to agree the scheme's parameters. On the recommendation of these groups, the scheme will be enshrined in primary legislation. All Members give the scheme their wholehearted support, as it addresses an inequity faced by persons with hepatitis C and HIV. The scheme will cost approximately €90 million over its lifetime, which will be for at least 30 years.

The scheme's administrator will be appointed under the aegis of the HSE. The administrator will be recruited as soon as possible after enactment of the legislation. Specific details on the administration of the scheme will be set out in regulations. It was also agreed that a travel insurance scheme will be developed within six months of the commencement of the main scheme. The Tánaiste and Minister for Health and Children has agreed that as soon as the Bill is enacted her officials will liaise with the support groups to finalise the regulations providing specific details on the functions of the administrator and requirements for participation in the scheme. She noted this process may take between three and six months.

In parallel with this, further details of a travel insurance scheme will be worked out so that it can be devised as quickly as possible. The Department is aware of the catalogue of problems that can be encountered by persons with hepatitis C or HIV, if they fall ill without travel insurance when travelling abroad.

The main parameters of the scheme include life assurance to 75 years of age, with a maximum life assurance cover of €400,000 or seven times the earned income of the eligible participant or his or her partner, or both, in respect of the tax year in which the proposal is submitted, up to a maximum of €500,000. These sums will be indexed in accordance with the consumer price index. It also includes mortgage protection cover up to 75 years on purchasing, changing or improving the primary residence, up to an overall maximum of the average house price in Dublin plus 25% or €375,000, indexed in accordance with the Permanent TSB-ESRI Dublin house price inflation.

For an initial period of 12 months from the commencement date, or, if later, three years from the date hepatitis C or HIV is diagnosed, all persons with hepatitis C or HIV will be entitled to apply for cover under the scheme. Thereafter, a waiting period would apply, during which full cover may be phased in over two years for the under-50s and three years for the over-50s. To ensure equity, an open period will be available for young people not ready to avail of insurance or mortgage protection at this time, until the date of their 30th birthday.

The maximum age of entry into the scheme will be 65 years and the age at which cover will cease will be 75 years. However, persons up to 75 years will be able to take out insurance cover in the first year of the scheme's operation. Following discussion with the representative groups when the Bill was published the Tánaiste and Minister for Health and Children agreed to increase the maximum limits for life assurance and mortgage protection by approximately 5.1%. This takes into account the cost of living increases that have occurred since the initial proposal was drafted 18 months ago.

A key contentious issue for the Opposition has been that the Bill copperfastens the need for a positive diagnostic test for hepatitis C. The Tánaiste and Minister for Health and Children has already outlined the reasons for this. Listening to the groups' concerns and to be as inclusive as possible in allowing eligibility for the Government's support schemes for persons infected with hepatitis C, it was agreed to extend the definition of positive diagnostic test. It will include another anti-body test, RIBA, and a test which detects active virus in the body, PCR. In addition, the Minister will be able to amend the legislation by regulation to include any new test for hepatitis C that may emerge in the future. This, together with a clause which allows persons who experienced an acute phase of jaundice within 16 weeks following the administration of the anti-D product, serves to make the criteria for eligibility for the compensation scheme and the Health (Amendment) Act scheme as fair and inclusive as possible.

The Minister of State at the Department of Health and Children, Deputy Brian Lenihan, outlined how State officials work closely with representative groups on the development of all services. An example of this co-operation is the work achieved by the National Haemophilia Council since its establishment under statute in 2004. Members of the Council, chaired by Professor John Bonnar, include clinicians and nurses, representatives of the Irish Haemophilia Society and health service officials, who work together to advise the Tánaiste and Minister for Health and Children and others on all aspects of haemophilia.

Through the product selection and monitoring advisory group, Irish Blood Transfusion Service officials involved in the tendering and procurement for recombinant products used in the treatment of haemophilia liaise with the Irish Haemophilia Society, virologists, clinicians and other experts to ensure the safest and most effective products are procured.

The tragic episodes of infection of blood and blood products took place from 1977 to the early 1990s. Since then every effort has been made by the State to recompense the victims of this terrible scandal. A multimillion euro investment programme was approved in the late 1990s to support the re-organisation and re-development of the Irish Blood Transfusion Service. The primary objective was to ensure the service was resourced to provide a transfusion service in line with best international standards. Significant additional resources were made available to the service to support the provision of a new national headquarters, development of a new components-processing laboratory and other improvements at the Cork centre. Other improvements include the implementation of a new IT system, the introduction of new technologies, such as PCR testing and leuco-depletion, to improve the safety of the blood supply, and additional senior staff appointments, which have resulted in the establishment of new personnel and finance departments.

The Irish Blood Transfusion Service has introduced major new testing programmes in advance of most other transfusion centres internationally. It continuously monitors international developments in this regard, such as guarding against emerging threats, such as variant CJD. All these developments will undoubtedly contribute to a modem, safe and efficient blood transfusion service to meet the demands and challenges of 21st century.

Since the introduction of regulations to transpose a European directive on quality and safety of blood and blood products, SI 360 of 2005, the activities of blood banks and blood establishments must be authorised by the Irish Medicines Board. Strict standards must be in place for the collection, testing, processing, storage and distribution of human blood and blood products. Penalties are imposed on facilities that do not comply with the regulations. Significant funding has been allocated to ensure compliance with statutory requirements that will result in improved hospital systems and the traceability of the blood transfusion chain.

I join those who have spoken in sympathy and support for the victims of infected blood and blood products. I am pleased to be here to give my full endorsement to this Bill, which aims to strengthen and enhance the services available to persons with hepatitis C and HIV. I congratulate the representative groups — Positive Action, Transfusion Positive, the Irish Haemophilia Society and the Irish Kidney Association — for their enthusiasm and altruism and for working relentlessly with State officials to ensure that their members get the best possible services from the State.

State funding of approximately €1.5 million each year is provided towards the administrative costs of the representative organisations and this funding will be maintained. I hope we can continue to work in a spirit of co-operation with the representative groups and that services continue to be enhanced and developed.

I give this Bill my full support and I look forward to its passage into legislation so that the much needed insurance scheme can be established and insurance products can be made available to persons with hepatitis C and HIV.

Photo of Joan BurtonJoan Burton (Dublin West, Labour)
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Compassion fatigue is a well known syndrome in development and overseas aid work. As a result, no matter how much sympathy a person has for victims of hurricanes or other disasters, he or she simply cannot give any more, especially any more money. They can have sympathy but not money. Compassion fatigue appears to have struck the Government in respect of hepatitis C. This is the full stop, the last note in regard to an issue the Government wants to see closed. It is sorry about what has happened and has compassion for those concerned but it will not address the issue in the manner advocated by those who are affected by State actions which poisoned their blood and health and traumatised their lives. Effectively these people will have to live with this for the rest of their lives.

That is not to say anybody in this House or in the general population does not fall ill or develop conditions to which they must attend. The difference in this case is that these illnesses were caused by State actions in regard to contaminated blood products. If the State is in any way caring or consensual where a health system administers mass treatment systems and the State makes a mistake then it must compensate people who suffer as a result of the error, maladministration or mistake, fairly generously and in full.

The Government has obviously decided to hang tough. It appears it has decided to call it a day on this scheme and put a final full stop to it. In 2004 we were promised an insurance scheme to address the lack of insurance cover for the people affected as they could not get insurance for houses or travel, but this Bill is far more than that. Clearly, the Tánaiste and Minister for Health and Children has been advised to take this opportunity to put a full stop to the scheme.

As the Minister of State, Deputy Tim O'Malley, rightly indicated, we are talking about a relatively small number of people — 1,700 — between the four groups the Department has dealt with. He stated the estimated cost of the new scheme will be €90 million over its lifetime, which will run for at least 30 years. Let us think about that and what would be the cost of conceding the additions sought by the four groups, and how we make decisions about spending money. The sums involved are so small that a whip around the builders who will be in the Fianna Fáil tent in the Galway Races in six weeks would sort out the problem. That is the level of finance that is required.

Last week the Revenue Commissioners published a report on the top 400 earners. These are people who earn €250,000, €500,000 or €1 million a year. The report shows that six of them paid no tax at all. Another significant number of them paid less than 5% in tax. If the Minister for Finance were to hang tough with these people, the amount of money it would take to bridge the gap between the Government and the four organisations could easily be made up.

I do not accept the comments made yesterday by Deputy Kelly, whom I know is a compassionate person. He was wrong to state boldly that there are millions of people around the world who suffer from hepatitis C and get on with it. That is not the point. We hold ourselves up as the Celtic tiger, the most successful country, the best of the best. The Government does this day in and day out. We now have higher GNP and GDP per head than almost any other European country. However, we know from a recent survey that while we are ahead in terms of wealth, unfortunately, in terms of the health service we only rank above Lithuania. What is required is for the Government to cross bridges and bridge gaps. The amount of money involved is small.

The Minister of State, Deputy Tim O'Malley, referred to the tribunal awards amounting to €660 million, including the legal costs. That is a great deal of money. We should examine what people have done with it. Their lives have been seriously affected. They have had to give up their jobs. The entire life prospects of people have been negatively affected. Some people have died from this condition. I salute the organisations like Positive Action who have retained a degree of positivity during all this time that is truly amazing. It has taken a holistic approach and sought to find well-being in the worst of circumstances.

Most Members know people personally affected by this issue. The Irish Haemophilia Society has done Trojan work also for people who may be brought down by the level of medical difficulty many of them face. The fear of the unknown is another factor about which we should not forget. God forbid, some of us may suffer from certain conditions but when one feels healthy, one hopes for the best. People bought houses with the €660 million, especially young people with haemophilia. That was the right thing to do. These people are also eating better food which they need to do because of their condition. It is not as though they ran amok, went to casinos and threw it to the wind. Most people and their families have conserved the money carefully. A small bit of redistribution has taken place. Property and land deals in Dublin 4 have probably made more than the cost of the tribunal in the past six months in terms of profit. They have also managed to escape stamp duty on that. The Minister of State at the Department of Health and Children, Deputy Tim O'Malley, promised to continue the funding of the relevant organisations at €1.5 million per year and this is good news. Storing electronic voting machines is costing €700,000 per year. Could the Minister of State talk to his partners in Government and suggest they call it a day on these machines and use the money saved to bridge the funding gap relating to these four organisations, the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive? The PPARS system has cost €150 million and counting. How does that compare to the Minister of State's generosity in allocating €90 million to this scheme? I served in Government as a Minister of State and I know money must be watched carefully but this relates to bridging a gap. I do not believe the Minister of State and the Tánaiste and Minister for Health and Children, a politician of significant ingenuity, cannot bridge this gap to meet the needs of the four organisations.

I welcome the Minister of State's comments on extending the test. However, there is no satisfactory, scientific answer relating to this issue. Of the people contacted that received blood products some have died, some have been struck by serious medical conditions and others have got away comparatively lightly because they had antibodies relating to their infections. I suggest we go through the proposal by the group again. On page 176 of the Finlay report it is stated that it is possible for a person to be infected with hepatitis C and subsequently lose the detectable virus and antibodies. The ELISA test is supposed to detect antibodies but the report confirmed it does not always do so.

There has been a promised extension through the inclusion of the PCR test and that is welcome, but the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive have pointed out that consultant hepatologists believe patients exposed to the virus may possess a low level of antibodies that does not reach the cut off level in the standard test. In the small number of cases in which this has arisen to date the Hepatitis C Compensation Tribunal has been willing to accept the clinical diagnosis of a consultant hepatologist as evidence entitling the claimant to compensation. This is the point. Why cannot the Minister of State concede it? It is not too late to accept amendments from the Labour Party and other parties seeking to cross this small bridge. Financially it amounts to an amount similar to that if we gave up on the notion of e-voting. Members could suggest other areas where money has been wasted that could be used to bridge this gap.

Deputy Tim O'Malley is a Minister of State at the Department of Health and Children, so he knows better than I do that all of the people affected by this, whether positive or by not suffering much or at all so far, are subject to regular health checks and medical examinations depending on the level of each of their conditions. Some of the most skilled doctors in the country have built a world renowned expertise due to what has happened. Why does the Minister of State find a clinical diagnosis by a consultant hepatologist unacceptable? Over the 30 years this scheme is proposed to run medical science will progress and the relevant tests will change. Already, in the 12 years since this issue came to our attention, the medical landscape has changed.

Can the Minister of State not agree to what is being asked? I promise, on my word as an accountant, that the money involved does not amount to much. Medical science keeps moving and what we know now will develop over time. The Minister of State as a chemist has significant knowledge of medicine and the pharmaceutical industry. He must remember the shock when people first heard of this matter just as I remember the reaction in the Department of Health. Every Minister of Health and Children since has struggled to come to terms with it but we are now on the last mile. Medical science has already expanded tremendously and there are treatments available that have changed the landscape. Approaches to medicine and well-being that hardly existed 12 years ago have been adopted by some of the groups. The proposal relating to a clinical diagnosis is absolutely correct. I hope the Minister of State has an opportunity to reconsider before the conclusion of the Bill.

Yesterday at the Committee of Public Accounts I asked the Secretary General of the Department of Health and Children why it was not possible for parents of a child born with Down's syndrome, this week or next week, to get a medical card, given that it is a life long condition. I also asked why there was no guarantee relating to the domiciliary allowance and so on. The Secretary General, a caring and compassionate person, told me it was a question of money, that some people could have very high incomes and would not be entitled to a medical card. I know that, but it does not make sense that we will spend years nit-picking over this scheme for the sake of a small amount of money.

Last week in the Committee of Public Accounts the Secretary General of the Department of Justice, Equality and Law Reform told us as a statement of fact that asylum seekers lied through their teeth.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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He should be sacked.

Photo of Joan BurtonJoan Burton (Dublin West, Labour)
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He also, I think, waved his hand in the air on the issue of under age asylum seekers. One could watch the videorecording to confirm that. Secretaries General of Departments do not face the people at election time. They tell us how to spend and mind money, which is their job at which they work hard and that is why they are paid €150,000 per year. Calling the shots on this Bill is not the job of any Secretary General. It is not up to them to have the final word on negotiations and issues that have deeply affected many people in this country for 14 years.

The Government is suffering from terminal compassionate fatigue. It has lost its courage in facing up to Secretaries General of Departments. Who commissioned the PPARS system? The Minister of State and the Tánaiste and Minister for Health and Children did not sit down at a terminal and work it out. Civil servants did that, but the Department of health and Children had to clear up the mess. The Minister of State should have courage, talk to the Tánaiste and Minister for Health and Children before we conclude and bridge the small gap.

12:00 pm

John Dennehy (Cork South Central, Fianna Fail)
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I welcome the opportunity to contribute to the debate on this Bill. I have tried to follow this debate as best I could over the past few days, however due to committee meetings and so on, there may be a degree of repetition. We prepare what we wish to say but cannot be certain it has not been said previously. This Bill has been a long time coming to fruition but hopefully the final article will help to normalise, as far as that is possible, the lives of people affected by that horrible episode in Irish health care, which has been referred to by others. The need to establish the life assurance support, and earlier the compensation tribunal, for the people infected through blood products administered by the State-run BTSB stems from an enormously distressing chapter in Irish medical history. I agree with speakers who have argued that we must learn from that and try to ensure it never happens again.

That period was particularly distressing for the victims in the sense the trauma of discovering in the mid-1990s that they had received contaminated products was followed by a veritable obstacle course in trying to secure redress. Along with all of their medical and associated difficulties many of those infected through no fault of their own experienced difficulties in areas of life which many of the rest of us would take for granted, particularly in obtaining life and travel insurance. That insurance issue is the kernel of this Bill. Whether it was life insurance, mortgage cover or travel insurance, it was a problem faced by many of the victims, adding to the many other difficulties they already faced.

Many public representatives have been approached by the four organisations involved, which have been working at the coalface on behalf of victims. It has been a very long and difficult road for all of the people concerned. Since the idea of the tribunal was first mooted, there have been many twists and turns in the story. The prospect of further difficulties frightens everyone to some degree, particularly those of us who know some of the victims and their families. The new fear of the campaigners for justice in the four victim support organisations is that elements of this Bill will be used to modify or dilute the compensation agreements established by the tribunal and Deputy Burton spoke of their fear of the unknown. I have received assurances that will not happen and the Tánaiste and Minister for Health and Children has already tabled a number of amendments to the Bill to ensure it will not happen.

These people have suffered at the hands of the State and there is a natural suspicion among them, much of it arising from the original approach adopted by the State in dealing with their case. I have spoken to people in Positive Action and the Irish Haemophilia Society who have very genuine concerns. This is not a made-up issue and they are not just taking a stand for the sake of it. It is important to note that their concerns are not primarily for themselves but for future cases of future difficulties faced by people. They are afraid that others will lose out if there is any technical loophole in the law.

The tribunal became a statutory body with the enactment of the Hepatitis C Compensation Tribunal Act 1997, which was amended in 2002 when the Oireachtas re-examined some of the issues that had arisen. That gives me hope that if any difficulty arises from this legislation, we can revisit it. The original legislation was amended to include persons infected by HIV as a result of the receipt of relevant blood products within the Republic of Ireland. This Bill, as the Minister of State outlined, seeks to further enhance the rights of those infected by adding to the current compensation and special health card and it will provide the support needed with regard to life assurance and other areas of life. One of the areas of life we take for granted is travel insurance. Life was made very difficult for the victims because they could not obtain such cover.

The mechanisms will be funded by the Exchequer to the tune of €6.4 million per year for a period of 30 years, or more if required. I am concerned when we are discussing issues that are so important to people's health to hear Deputies referring to tents in Galway and other issues because that is only political point scoring. This is a tiny sum of money in the context of what we are spending on health overall. Money is not really an issue here because none of us would tolerate the cutting off of funding for these victims.

Like other Members, I was contacted by the organisations involved which expressed concerns about the proposed testing procedure. I hope the amendments tabled by the Tánaiste and Minister for Health and Children, and any others agreed, will help to ease their fears. It has been too hard a journey and battle for those people to lose any ground now and given the political track record on this issue, we should take their concerns very seriously.

Politics should only come into this debate in the context of the legislative proposals and not in the context of on whose watch this was allowed to happen. Yesterday a Fine Gael representative suggested the Bill was coming from an uncaring Government. Most of us here are well aware of his party's reaction at the time this travesty in the provision of public health services happened. We have no wish to revisit that approach. We will never see such an approach from this or any future Government with regard to such a sad issue. It would not be tolerated nowadays because of the case put, and the experience gained, by the people involved. They have been an example to other groups working in areas of need. People involved in community development and other areas have learned from the constructive, positive and meaningful approach of these people, which eventually yielded what was needed.

There have been calls for this Bill to be delayed but there were also criticisms of the delay in bringing it forward. It is right to enact the legislation. If the Bill was introduced in three or six months' time, the same amount of time would be allocated for the debate. All Members in the House have experience of this issue and know what is involved and what needs to be done. We also know the amendments that are needed to make the legislation acceptable and I hope we can agree on those. When the Bill is finalised, however, there must be an understanding that if what was feared by the four organisations comes to pass, that is, that any person who was affected loses his or her entitlements, there will be a revision facility. We are accepting the efforts by the Tánaiste and Minister for Health and Children to get this right but if something happens to go wrong, we cannot be expected to wait for years for the opportunity to put it right. There must be a facility for revisiting the legislation if required.

Deputy Burton referred to payments and money for redress but euros can never provide redress for the hurt and pain that was suffered by the victims. However, it can be a source of succour and can enable people to do things that are needed. The issue is primarily about the welfare of those people affected. We all know from dealing with friends and constituents and from reading about the issue what has gone on to date.

The insurance scheme will cover the risk premium where companies are willing to give cover and give cover or assume the risk on life cover.

The contentious element is that the Bill outlines that hepatitis C must be diagnosed using the so-called ELISA scientific test, which is similar to that used in Canada and the UK. The Tánaiste's 36 amendments, some of which are technical, are important. I hope that they will remove at least one of the worries that I shared, namely, that any single test can be less than perfect and can throw up inaccurate results. I hope that ending absolute dependence on that specific test will help allay fears. As we know, cases will start from this June. When the Bill was published, many of us were concerned about people who had previously tested positive, but we were assured that there would be no trouble.

Where legality is involved, all of us lay people have some reservations. Some people fear that the change will subject new applicants to over-stringent testing, resulting in fewer people being eligible. Previously, the word of a specialist hepatitis C doctor was sufficient for diagnosis. I would like to know more about the change and I will be listening on Committee Stage. Any more mistakes would compound the less than perfect response of the past and would have terrible implications for those affected.

The Minister of State, Deputy Tim O'Malley, referred to advice, and perhaps I might touch on a related issue fundamental to the cause of the problem. The reorganisation of the Irish Blood Transfusion Service since the ethical and practical mismanagement was uncovered and acted on is welcome, dependent as we are on its integrity. However, the approach by some of the participants when it happened and for long after was simply diabolical. I was among those taken to task and threatened with legal action for my efforts to retain blood-testing facilities in the southern region to serve Cork, Limerick, Kerry and surrounding areas. I will not labour in this Chamber how crucial it is that people have confidence in the Irish Blood Transfusion Service. On that matter, the failure to provide within a reasonable time modern, purpose-built accommodation with full testing facilities for the Irish Blood Transfusion Service in Cork has been nothing short of scandalous. It is time that the Department of Health and Children delivered on a promise that it made in 1997 in that regard.

That promise followed a mighty battle against forces within the Blood Transfusion Service Board that were intent on centralising all testing and other critical related aspects of the service in Dublin. The Minister of State, Deputy Tim O'Malley, referred to it, but at the time the arguments of highly qualified and very concerned local medical personnel from an entire range of disciplines on this issue were sneered at. Public representatives suffered an even worse fate as we were threatened with being sued for daring to point out the stupidity of the proposals.

I recently explained to the Minister for Health and Children, Deputy Harney, through a parliamentary question, that the need to replace the service building in Cork where the contaminated blood product was first discovered was agreed by the BTSB and the Department nine years ago. At that time, the then Minister for Health and Children, Deputy Cowen, approved the centre's replacement, stating that the Department would make available the necessary resources to achieve that objective. When I asked Deputy Harney in my question whether the current facility still met the requirements and standards laid out by the Irish Medicines Board, I was informed, as the Minister of State, Deputy Tim O'Malley, has outlined, that the BTSB invested more than €3 million in the refurbishment of the Cork centre in 2004 but that it believed that replacement was still required in the medium to long term. That is a rather carefully couched way of saying that we must replace that centre in Cork.

The Minister for Health and Children, Deputy Harney, also pointed out that there was provision in the Capital Investment Framework 2005-2009 for the appointment of a design team and commencement of the planning process for the centre and that the process was subject to ongoing consultation between the board and the Department. It is appropriate in this debate to point out that the Cork centre, despite interim work, needs replacement. Its staff were those who originally identified and traced the difficulty and they have not been complimented enough through recognition of their centre and what it achieved. That failing was certainly true of certain people involved in the capital at that time.

In the interests of all future users of blood and blood products, it is essential that we have the best clinical facilities to ensure that we can achieve the highest possible level of health safety. We have had a desperate lesson in that regard that we certainly do not wish to repeat. That is over and above what we are dealing with in this Bill, but in these changing times it is critically important to ensure that we spend whatever is necessary for a safe future.

I have the list of amendments submitted. The Tánaiste has proposed 36 amendments, although some are purely technical. I hope that the overall inclusions will improve the Bill and move it closer to what is acceptable to those involved. We always listen to expert sources. It is part of our job given that we are a conduit not only for public opinion but for professional opinion. In this instance, judging from the telephone calls that I made last night, those in the relevant organisations to whom I spoke have learnt the hard way how to deal with the issue, and I will be listening to their advice.

I hope that the rest of the work this afternoon will satisfy at least some of their concerns. I appreciate, as Deputy Burton said, that there will be some technical constraints on the Minister. However, I still believe that we can meet people's needs, which they have once again put forward so positively and carefully.

Photo of Olivia MitchellOlivia Mitchell (Dublin South, Fine Gael)
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I wish to share time with Deputy Finian McGrath.

This is just another chapter in the very long saga of blood contamination that has been going on for approximately 15 years. As each chapter has unfolded, we have had debates and discussed compensation legislation in the House. We have also debated the report on the causes of blood contamination. On each occasion, we must remind ourselves once more of exactly what happened and its impact on those affected. Today, in our debate on this legislation, we are talking about those who lived, but many died. Not only were individuals affected, but entire families were blighted as a result of the contamination of blood products. Their lives were changed for ever as a result.

Deputy Burton mentioned that many people have their lives blighted by terrible illnesses, but the difference here is that the suffering was caused by the State. After a certain date, it would have been avoidable if the State had behaved as it should. I read the report into the causes of the contamination, and it was a very sorry saga of errors compounding errors, mistakes, blunders and negligence. Whatever blame might attach to individuals, it all took place in a system that was completely under-resourced and maladministered. If there was a single cause, it was a lack of communication throughout the entire system. The actors involved at the time undoubtedly operated in a system that was programmed for failure. It was almost inevitable that disaster and catastrophe would occur. The State was to blame. There is no point in talking about compassion, kindness and generosity because they are not enough. We are obligated to these people and everything we do in terms of legislation and the schemes that are set up must be informed by this sense of unlimited obligation.

We cannot compensate these people for what has happened to them but we can ameliorate its impact. The impact is medical, social and psychological. However, there are also practical implications for those infected with hepatitis C. Simple things that most of us take for granted, such as the ability to get travel insurance, life assurance, a mortgage and accompanying mortgage protection, which is a prerequisite for obtaining a mortgage, are denied these people. Despite the length of time it took to bring this legislation forward, we hoped we could welcome it. Instead, we find that we are dealing with a measure which has appeared out of the blue. Under the cloak of providing an insurance benefit the Minister sneaked in an amendment to commitments already given, to reduce the level of protection in 1997 in a mean-spirited, nit-picking and insensitive manner. The insensitive nature of this measure is uncharacteristic of the Minister and I am surprised she would stand over such a measure.

To compound the problem, not only does she propose to reduce eligibility, she will do so in an underhand way by introducing it as if it was a benefit in an insurance Bill which was negotiated over many years but which is now about something entirely different. The Bill now limits benefits given in the past. Previously, the report of a consultant in hepatitis C was sufficient to establish eligibility. The Bill now stipulates that eligibility be determined by a single test, the purpose of which is to limit eligibility. It is not the case that it is a wonderful test. It simply limits eligibility.

I, along with very many other people here, am not an expert in medicine, medical tests and blood. However, I know enough to realise that medicine is not an exact science and that no single test will ever be foolproof in all cases. Yesterday, Deputy Twomey spoke about the possibility of false negatives and false positives. We know people who have been infected with hepatitis C from contaminated blood and blood products and who have not tested positive but may test positive in the future. The question of what happens in the future is the nub of the problem. The stress caused by being infected with an illness like hepatitis C relates to the unknown and the question of what will happen in the future. The State tries to give some element of certainty to these people but the Minister is trying to establish certainty in respect of what she will be exposed to financially. It has been stated, and we all realise, that the amount of money in question is a minuscule amount in the context of total health spending.

There is no certainty about the health prospects of those infected, much as the Minister would like to establish it. Her desire for certainty about the future is not half as strong as that of those who were infected. The desire to give these people some degree of certainty should inform everything we do here in terms of legislation and compensation schemes.

A particularly upsetting aspect of this matter was that in an attempt to hide the real import of the legislation's contents and pre-empt any criticism, the Minister's press statement referred to the generosity of the State. This is an insult to those affected. Generosity does not begin to describe our obligations to these people. It defies understanding that the Minister appears to regard spending on victims as some kind of investment programme where value for money audits are of paramount importance. We fail to understand why there is suddenly a need for this. Did the Minister think the State was, in some way, being defrauded by people falsely claiming to be infected? Were consultants producing false certificates confirming diagnoses? From where did the idea behind this legislation come? This is the mystery that none of us can understand.

In respect of consortium, the Minister spoke about third and fourth partners. What about first partners for young people who have been infected and are now approaching a stage in life when other people of their age can consider forming long-term relationships? Are they to be completely cut off from any kind of normal life?

I understand the Government is belatedly bringing forward amendments to the Bill, which I have examined. I am not sure if too many people would understand these amendments. I wonder if even Deputy Devins, a colleague of the Minister and a doctor, can understand this amendment.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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He is one of the dissidents.

Photo of Olivia MitchellOlivia Mitchell (Dublin South, Fine Gael)
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Indeed.

Photo of Jimmy DevinsJimmy Devins (Sligo-Leitrim, Fianna Fail)
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Life is full of dissidence.

Photo of Olivia MitchellOlivia Mitchell (Dublin South, Fine Gael)
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I am glad that, based on what has been said here in the past two days, the Government recognises that it was totally inappropriate to introduce this amendment. I acknowledge that none of us are competent to judge whether it fits the bill. Fine Gael proposes that we remove the offending sections because it is unacceptable that we are suddenly handed amendments of this sort. After months of negotiations on the detail of the Bill, a very technical amendment is suddenly produced on which we are supposed to pass judgment when we are not competent to do so.

Fine Gael proposes that these offending sections be removed and the Government go back and discuss them with support groups. We should proceed with the legislation. The people have waited long enough for this very practical scheme. It is outrageous that it has taken so long to introduce these measures but at least there is agreement on what the insurance scheme can provide. I ask the Minister to ensure that this measure goes ahead and that the offending sections are removed. If there is a genuine problem, she should renegotiate with support groups but she should not sneak it in under this legislation.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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I thank the Ceann Comhairle for the opportunity to speak about this very important debate on the Hepatitis C Compensation Tribunal (Amendment) Bill 2006. I wholeheartedly support the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive. I commend their efforts and work and thank people like Detta Warnock, Michael Davenport, Maura Long and Mark Murphy for their dedication and commitment to this major national health issue.

I challenge the record of all the political parties and successive Governments on this issue. Their record of conduct towards those infected has been disgraceful. Successive Governments and officials in different Departments let these people down. We should dispense with hypocrisy and acknowledge this fact.

In this Bill, the Minister proposes to make fundamental amendments to the Hepatitis C Compensation Act 1997 which will significantly limit the categories of persons entitled to claim for compensation and provision under the health code. Groups representing these people were not informed about these radical proposals until 20 June 2006, which is unacceptable. The Minister proposes that people infected with hepatitis C be identified solely by a scientific test. Currently, a clinical diagnosis of hepatitis C is accepted by the compensation tribunal and the High Court for all other purposes, such as entitlement to health provision. The Minister proposes that a person who has received an identified infected batch of blood or blood products, such as anti-D, and has symptoms compatible with hepatitis C infection should no longer be able to establish entitlement to compensation and health provision.

In 2002, the then Minister for Health and Children, Deputy Martin, introduced an entitlement for spouses and partners of those infected with hepatitis C and HIV to make claims for compensation for loss of consortium. The Minister now proposes to deny these entitlements to certain categories of persons. For example, the spouse or partner of a young person infected at birth with hepatitis C was entitled to claim compensation, but such partners and spouses will now be excluded, which is grossly insensitive and a retrograde proposal.

It may seem ironic that people have to defend the important rights and entitlements fought for and secured in 1997 under the then Minister for Health, Deputy Noonan. The representative groups, many of which are present, are forced to oppose the Tánaiste because of these surprising and restrictive amendments to the existing code, for which there is no rational basis or public demand.

I ask all Deputies to support the sensible amendments tabled. It is disappointing that despite long negotiations with the Tánaiste and the Department of Health and Children on the proposed insurance scheme, these proposals undermine the rights and entitlements of hepatitis C sufferers for which people fought. I urge the Government to listen to the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive. They deserve our support. No one should play politics with this serious health issue. I urge the House's respect and dignified support for the families involved.

I was elected on a strong health and disabilities platform. I was a member of the Independent Health Alliance, which gave a commitment to support patients, victims and the people involved in different issues were any of its members ever elected to the Dáil. I am trying to carry out that mandate. The Government has the support of all of the Independents in this House. They comprise an important group within the Oireachtas. Members must get their act together. Independents will always side with the victims and the powerless.

Recently, the ten-year social partnership for 2006 to 2015 has been agreed. Section 30.9 of that agreement refers to the health service and ensuring quality therein. The deal to which the Government is signing states:

The parties to this Agreement are committed to improving the level of customer services to ensure a quality health service is provided to the public. One way of safeguarding quality is to have in place a robust customer complaints procedure. All parties will cooperate with the implementation of the statutory complaints procedure to be introduced under the Health Act 2004.

Quality assurance is an integral part of customer service. The parties will co-operate fully with all quality assurance initiatives designed to improve the quality of service to the public.

The Government must live up to this deal and stand with the people present today and the victims. Not only am I challenging the Government, I am challenging those with direct responsibility in the pharmaceutical industry. What occurred was a criminal act and should be treated as such.

In her contribution yesterday, the Tánaiste stated: "The Government acknowledges in the strongest possible terms that the infection of people with contaminated blood products was catastrophic for them and their families". She also said that no monetary support or compensation can repair the damage done, which is a statement I support, but the Government must do something about this serious situation. The Tánaiste also said that the Government is "working with the victims of infection to provide all possible supports to them". I agree with such, but will the Government listen to what they say and agree to the sensible amendments before the House?

I watched last night's "Prime Time" programme. Anyone who needs to be convinced should have done so. This is an important human rights and national health issue; it was a crime against the people infected, which we should not be afraid to apologise for. The Tánaiste also stated: "The second form of recompense is the provision of a range of health care services under the Health (Amendment) Act 1996. The cost of the health care scheme is approximately €15 million per annum." I welcome this provision, but this debate is on people's rights, families and health.

While I do not wish to politicise this matter, the references to dissidents within the Government parties are also important. Will those 16 Members bring their views to the sub-committees of their parliamentary parties, the Tánaiste and Ministers of State present and support the victims? It could be a classic example of people getting their act together and using their influence. While I differ with the Labour Party and the Green Party on many issues, the Independents will support sensible amendments that will help the victims. I suggest that the Government backbenchers examine this idea. Sections 1, 2 and 3 should be opposed. The Labour Party amendments, of which I received a copy this morning, are sensible. I am not playing politics with this issue. If anyone tables a constructive amendment to help the families and victims, Members have a duty to support it. Overall, it is important to support the people involved.

We must also face the reality that the priority of any health service is to care for its patients, but such is not happening. Despite our wealth and resources, there are large gaps. We have an opportunity to make a positive contribution and plug the gap in this issue. We are discussing citizens, taxpayers, families, partners and the defence of human rights.

Many people are angered by the way in which this matter is being treated. I urge all Deputies to support the sensible and positive amendments tabled, forget about party politics and political baggage——

James Breen (Clare, Independent)
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Hear, hear.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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——and examine and vote on the issue. We on the Independent benches will examine every issue. If someone has a sensible solution, we will agree to it. Constantly, we have done such during the past four years. Deputies should reconsider the matter and support the progressive amendments before the House to ensure support for the victims and their families.

Ollie Wilkinson (Waterford, Fianna Fail)
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I wish to share time with Deputy Devins. I welcome the opportunity to speak on this sad situation. Much has been said and written on this matter and many people have suffered as a result of what happened. Nothing in monetary terms and no words of mine or those of the eloquent speakers to whom I have listened can right the awful wrongs done to those people.

We are discussing those who survived, but many did not. A number of friends are in this situation. While sympathy does not do much good, I have the deepest sympathy for those affected. The Government acknowledges in the strongest possible terms that the infection of people with contaminated blood products was catastrophic for them and their families. While monetary compensation helps in a way, it can never repair the damage done to them. Ireland is doing more for victims compared with other countries in similar circumstances. The Tánaiste announced the publication of a Bill to establish a statutory scheme to address insurance difficulties experienced by people infected with hepatitis C and HIV through the State-administered blood products.

It is shocking to read about this situation and to see and know the people involved. The Tánaiste said this was an important measure to provide further support to people diagnosed with hepatitis C and HIV as a result of contaminated blood products being administered to them. Since 1997 it has been clear that infected people's ability to buy life assurance or mortgage protection policies added further problems to the damage they had already suffered. This Bill will bring about three forms of recompense, namely compensation, a special health card and life assurance support. If anything else can be done to provide adequate assistance to the people in this awful position it should be considered.

How can the awful damage that has been done be repaired? The Government is making an attempt to do so in this Bill, which will also allow for the development of a scheme for travel insurance, from which many people will benefit. It is funded by the Exchequer to the tune of between €1 million and €6.4 million per year for up to 30 years. Money can certainly help but we must always be acutely aware of what people suffered and remember those who, sadly, did not survive.

To ensure a consistent approach to all three supports it was agreed by Government that a hepatitis C diagnosis in the Hepatitis C Compensation Tribunal Acts of 1997 and 2002 and the Health (Amendment) Act 1996 should be defined in terms of a scientific test, ELISA. A similar scientific diagnosis of hepatitis C is used in other jurisdictions, namely the UK and Canada, where compensation schemes operate. The relevant sections would come into effect on 20 June but do not affect any claims already made to the compensation tribunal. I ask that all situations be studied again and examined thoroughly before any final decisions are made.

The objective of the scheme is to provide reasonable access to the insurance market, with certain limitations, for those for whom the cost is prohibitive, or cover unavailable. The existing supports are the hepatitis C and HIV compensation tribunal and the Health (Amendment) Act 1996, which provide for a range of health care services free of charge.

I will briefly summarise the insurance scheme. The State pays the additional risk premium while the life assurer is willing to provide cover subject to an additional premium. The State assumes the risk of the life cover where the assurer is not willing to provide it. In each case the person requiring insurance will pay the average basic premium which an uninfected person of the same age and gender would pay. The scheme will be available in respect of all standard life assurance policies offered by life assurers who are authorised to transact life assurance policies in Ireland and who opt to participate in the scheme. Life assurers who wish to participate in the scheme would enter into an agreement to abide by the rules of the scheme, which would also provide for an appeal in the event of a dispute. The scheme will be administered under the aegis of the Health Service Executive and specific details on the administration of the scheme will be set out in regulations. An administrator will be recruited as soon as possible after the enactment of primary legislation.

While all the above is welcome, we are dealing with one of the most tragic health-related occurrences in the history of this State. It has affected many people and their families and will do so for some time to come. I ask that all of us consider very carefully any potential schemes to help the people who suffered as a result of a mistake on the part of the State, before any final decisions are made.

Photo of Jimmy DevinsJimmy Devins (Sligo-Leitrim, Fianna Fail)
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I am delighted to have the opportunity to speak on this very important Bill, the Hepatitis C Compensation Tribunal (Amendment) Bill 2006. It is important because it will establish for the first time a statutory scheme which will address the difficulties experienced by people who have been infected with hepatitis C or HIV because of contaminated blood products in getting insurance. This insurance scheme is the third and final part of a three-pronged support system for people who have contracted these very serious diseases. I pay personal tribute to these very brave people who, it must be remembered, contracted these diseases through no fault of their own. The fault lies with the providers of the blood products which had been contaminated.

I personally know some of these unfortunate people from my time as a general practitioner in Sligo, before my election to the Dáil. The shock and horror as the full realisation dawned of what had happened to these very brave people was something I had not encountered before and would not wish to experience again. The State is obliged to do everything in its power to help the people who contracted these very serious and, in some cases, life-threatening diseases through no fault of their own.

The two other components of support are already in place, namely the compensation scheme and the special health card. The compensation scheme was put on a statutory basis by the Hepatitis C Compensation Tribunal Act 1997 and by the Hepatitis C Compensation Tribunal (Amendment) Act 2002. These two pieces of legislation encompassed a wide variety of people who could be compensated.

The second area of support is the special health card, which is awarded at the discretion of the CEO of the HSE. However, he must follow definitive guidelines, one of which requires proof that the infection resulted from the administration of blood products that were contaminated within the State. It is my understanding that particular circumstances apply to people with haemophilia who received blood products prior to 1992. It is important to note that any blood tests on which the consultant hepatologist bases his or her diagnosis of hepatitis C do not have to be current blood tests. The Act states: "The special health card is to be provided to persons who were infected with hepatitis C." The chief medical officer of the Department of Health and Children confirmed this in 2000, when he stated that if an applicant for the special health card had a positive test in the past, even thought their current test was negative, then that applicant was entitled to a special health card.

The third component of support addresses the insurance difficulties experienced by this unfortunate group of people. It has been clear for some time that infected persons were experiencing great difficulty in getting life assurance or mortgage protection because of the disease they had contracted through the administration of faulty blood products. The key to diagnosis is the ELISA test, the same test for hepatitis C that is used in the United Kingdom and Canada.

I will discuss some details of the insurance scheme as proposed. There are two categories of people whom this Bill will cover. First, it will cover those who can get insurance but only with increased premia. Second, it will cover those who are unable to get insurance at all. In the proposed scheme, the State will pay the additional risk premium where the infected person can get insurance but only at an increased premium. In the case of those unable to get any cover at all, the State will assume the risk. In every case the person requiring insurance will have to pay the average basic premium which an uninfected person of the same sex and age would pay. As I understand it, what that means, in effect, is that any person infected with hepatitis C or HIV as a result of infected blood products will not suffer in any way in obtaining life assurance. The risk and, as a result, the premium a person will have to pay is exactly the same as if he or she did not have hepatitis C or HIV. In other words, the State will make up the difference and provide life cover and mortgage protection to infected people as if they had not contracted the disease. This is only right and proper as those unfortunate people contracted hepatitis C or HIV through no fault of their own. Indeed, they contracted these devastating diseases because they were getting treatment for their underlying diseases but the blood product they were given was contaminated.

I wish to address some of the concerns raised by Members on all sides. Like most other Members, I have been contacted by representatives of some of the four advocacy groups which have been discussing these issues with the Tánaiste prior to publication of the Bill. I listened very carefully to what the Tánaiste said yesterday and there are a few points that need to be examined. Unfortunately, some members of the Opposition, none of whom is in the House at present, are trying to make a political football out of this which is totally regrettable in this very sensitive debate.

The insurance scheme is the first of its kind anywhere in the world and the Tánaiste should be congratulated on bringing forward this badly needed legislation. She stated that every person who receives a compensation award at the tribunal under existing or new legislation will receive the special health card. I understand that if a patient has the special health card, he or she will automatically qualify for inclusion in the insurance cover which we are debating.

I refer to the use of the ELISA test as a means of showing that somebody has been exposed to hepatitis C infection. I understand that this is the best indicator of previous hepatitis C infection, a point with which international experts and leading hepatologists in Dublin agree. I listened to the points made by some members of the Opposition and I ask the Tánaiste to fully explore this issue on Committee Stage. If this is the best test — my information suggests it is — then let us use it. If there is a better test, it should be considered. Committee Stage is the right time to discuss that further.

The diagnostic criteria do not apply to claims for compensation made to the tribunal before 20 June 2006, that is, the day the Bill was published. The last exposure to the contaminated blood products took place in the early 1990s. Anybody who was unfortunate enough to contract the dreadful diseases of hepatitis C or HIV will have done so by now and will have presumably applied to the compensation tribunal. If people have received, or will receive, compensation, they will automatically qualify for the special health card and, as a result, will qualify for insurance cover as outlined in the Bill. This applies to everybody who contracted the disease prior to 20 June 2006. If people contract the disease subsequent to that date, clinical diagnosis with altered liver function tests, particularly a raised ALT, allows them to get compensation during the first 16 weeks after infection. If they are outside that period, the positive ELISA test enables all three pillars of support to come into play.

I share the view of all Members that everybody infected with these dreadful diseases as a result of infected blood products should be able to access all three supports. I understand this Bill enables that to happen and I look forward to the Tánaiste confirming this on Committee Stage.

1:00 pm

James Breen (Clare, Independent)
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I wish to share my time with Deputy McHugh.

The infection of people with hepatitis C and HIV through the administration of contaminated blood products is one of the greatest shames ever visited upon the people of this State. That shame was deepened by the reaction of various Ministers for Health in its aftermath. Instead of full and rapid support being granted to patients, an attempt at cover up, finger-pointing and denial quickly followed. Eventually Judge Alison Lindsay sought to get and produce a complete picture of the circumstances surrounding the infection with hepatitis C and HIV of persons with haemophilia and all related matters.

While the report that followed was in no way warmly welcomed by those affected, Judge Lindsay in her report criticised the unwarranted delay by the Blood Transfusion Service Board in the introduction of HIV anti-body testing of blood donations but fell short of blaming that delay in causing specific infections. What is important here is that there was a delay and there was further, possibly unnecessary, infection. Further anguish and pain was suffered by the victims of infection and their families by the lack of adequate resources and facilities at the national haemophilia treatment centre.

One of the most distressing features of this scandal was the delay in informing patients of the results of tests. Judge Lindsay also criticised this and recommended that it never recur. However, there is anecdotal evidence that these delays continued. At the end of this process, agreement was reached between the Minister for Health and Children and the Irish Haemophilia Society in regard to payment of compensation to haemophiliacs who were infected with HIV and was the basis of the Hepatitis C Compensation Tribunal (Amendment) Act 2002.

This new Bill, which amends the 2002 Act, supposedly gives greater support to all sufferers of that infection and their families. If this Bill came remotely close to doing that, it would not have lost the support of the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive. Of course, the State should intervene in cases where the victims of contamination cannot get life assurance or mortgage protection cover, but steps to immediately provide travel insurance should also be included.

The Minister in her press release stated that this Bill was produced having worked closely with the representative groups of sufferers on agreeing the parameters of the scheme. Why then did they only hear about the new scientific definition for hepatitis C last Wednesday week? Her press release further stated that the Bill gives further support for people diagnosed with hepatitis C and HIV. She is giving so much more support that this new scientific definition will result in some of those already infected not qualifying for insurance cover under this new Act. This part of the Bill must be immediately dropped.

The Irish Haemophilia Society held its annual general meeting in March of this year and the large attendance included officials from the Department of Health and Children. One of the main items on the agenda was what members of that society considered to be the consistently adversarial approach of the compensation tribunal. Instead of taking on board the views of this meeting, the Tánaiste has further alienated members of the IHA with this Bill. She should either attend meetings herself in the future or send officials who can grasp the mood of a meeting and report back to her accurately, which did not happen.

The issue of problems obtaining insurance by those infected with hepatitis C was raised at the first meeting of the consultative council on hepatitis C in March 1997. This council is a statutory body established to advise the Minister for Health on all aspects of hepatitis C. Over nine years later, the Tánaiste finally managed to produce this Bill which is so out of touch with the concerns of sufferers that all bodies representing their views have called for the withdrawal of all or parts of it. Is it so unrealistic to ask that the Tánaiste present a Bill to the House which would meet all the requirements of those who were infected in the first place due to the shameful inadequacies of State bodies? Perhaps I should not be surprised when I see how miserably the Tánaiste has handled our accident and emergency crisis, inspection of nursing homes and child crèches, ambulance services in Clare and staffing and morale among nurses, junior doctors and consultants. Those infected as a result of contaminated blood products suffered owing to the lack of controls in the Irish Blood Transfusion Service. They then had that misfortune compounded by the inability of proper resources to aid their treatment, and many suffered appalling treatment due to a lack of information and misinformation in their diagnosis.

Despite their co-operation, the Lindsay tribunal seemed to be fast-tracked through to the report stage while, simultaneously, the Flood tribunal took a more detailed and comprehensive approach to its terms of reference. The findings of the Lindsay report did not find any individual to blame for the infection of hundreds of individuals. It found that only unnamed officials who gave misinformation to Minister for Health and Children seemed to be at fault and found that the final report should not be forwarded to the Director of Public Prosecutions to ascertain whether charges should be brought against anyone.

The report should have gone to the DPP to allow him to decide on the charges issue. In spite of these failings, the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive all co-operated with the Department of Health and Children to try to improve the lot of their members but were again failed miserably by the Tánaiste and this poor excuse for a Bill, which penalises some of those whom the State should bend over backwards to help in every way possible.

On a positive note, although I am critical of the Tánaiste at times, I welcome her announcement about visiting hours in hospitals, which follows a parliamentary question I tabled and which aims to stop the spread of infectious diseases. However, the Tánaiste must strictly enforce the rules for visiting hours so that, apart from emergency cases, there will be no visitors in hospitals after 4 p.m or 8 p.m. Doctors and nurses will then be allowed to do their job without being interrupted by flows of visitors which make it seem as if our hospitals were railway stations or airports.

Paddy McHugh (Galway East, Independent)
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To have people infected with contaminated blood products through no fault of their own and with no knowledge that such a thing was happening is tragic. The devastation that must have been caused to the people affected and their families cannot be comprehended. To have such havoc landed on innocent people by a State agency is incomprehensible. It therefore behoves the State to act in a thorough and comprehensive manner to ensure that amendments are made and that some element of comfort is provided to those people affected by hepatitis C and HIV.

All the indications were that progress was being made and that the proposed measures had the full support of the representative organisations, given their full involvement and the consultation with them. It is disturbing and disappointing to find that the measures proposed were not discussed or agreed with the representative organisations, which must be a major blow to the confidence of those affected. They have had their lives destroyed by contaminated blood products administered by the State. Now, they again find that the State has not been upfront with them. This is a scenario that cannot be allowed to remain unaltered.

A balanced approach is needed to rectify this unacceptable situation. I listened to some of the contributions to this debate yesterday. To put it mildly, some of the language was nauseating and contributed nothing to a resolution of the difficulties involved. There is no place for emotive, irresponsible language designed to inflame a situation which calls for informed, controlled, logical argument to achieve the best results for those affected.

To listen to some of the comment yesterday one would have thought the Tánaiste was acting for some spiteful personal reason, which is not the case. The Tánaiste is acting on advice. She has many considerations to take into account and it is not a weakness for us to acknowledge that. However, in this instance, because of the raw human issues involved, further refection is needed. We need to separate the introduction of an insurance scheme from the additional factors that are being included. To be fair, those affected were awaiting the introduction of an insurance scheme and that was the only issue discussed with them in regard to the proposed Bill. Consequently, they again feel hoodwinked and let down by the State.

This is not an acceptable way to treat innocent people who are living life sentences through no fault of their own. These people have come through hell. They have had to battle with various Governments over a number of years. Many of them have died without bringing their campaign to a successful conclusion. They have died feeling betrayed by the State and feeling that nobody cares. They are ordinary, innocent victims who were further victimised by the State which was originally responsible for their misery and which made them fight every inch of the way for basic measures to help in some small way to deal with the terrible burden inflicted on them.

They can be forgiven for feeling the State does not care. They can also be forgiven for feeling that the caring society we are supposed to have does not exist. These people need to get the maximum the State can provide for them, and they need to get it with the minimum of fuss, with no strings attached and with no complications. For those reasons, I ask the Tánaiste to withdraw the additional elements attached to this insurance Bill and to move ahead only with the insurance elements of the Bill at this time.

I noted the Tánaiste's statement yesterday, with regard to the Bill as presented, that the amendments proposed will not adversely affect any of the people concerned. That may be so, and I do not wish to discuss it in this debate. If the Tánaiste makes the decision to proceed with the insurance element only at this time, and if she feels the need to come forward at a later date with amendments to existing legislation, so be it. By proceeding with the insurance element only the Tánaiste will not be giving in or capitulating to pressure but will merely be showing herself to be human and caring, a person who understands the anxieties of others and one who is anxious to avoid causing further distress to those concerned. She will indicate that she is a fit person to be Tánaiste by being open to considering other views and being big enough to act in a humanitarian manner when the need arises.

Every action it is possible to take should be taken to avoid causing those involved any additional anxiety or hardship. During the "Prime Time" programme on this issue last night, one of the contributors stated he would not expect to get anything in regard to this issue without a fight. His next words were heart-rending. He said: "My days of fighting are over." He is obviously tired, frustrated and let down. He feels alone and betrayed and is, in a sense, a pariah, all because of an illness that was cast on his family by State negligence. He had to fight the State continually to get some recompense. It is a fight he has fought for years, until now when he says: "My days of fighting are over."

Also highlighted in the "Prime Time" programme were the minimal expectations of those affected. Another man wanted this insurance scheme put in place simply because he wanted to go on a foreign holiday where he could "bring my daughter onto the beach to play tennis". This is a simple wish for any caring father but the desire of a father to bring his daughter on a foreign holiday and play on the beach is being denied to fathers who were infected with hepatitis C and HIV because they cannot get travel insurance, a facility available automatically to most people but not to those with these conditions.

The insurance elements of the Bill are welcome and will remove many of the impediments experienced by a large number of people. It will, however, be unfortunate if the good elements of the Bill in the area of insurance are polluted by the additional elements included without consultation. There is no justification for calls for further delaying the introduction of the insurance proposals in the legislation. They should be enacted immediately and additional features left in abeyance. If the Tánaiste and Minister for Health and Children believes it necessary to reactivate these additional elements in future, she can engage in full with the representative organisations and, following due consideration, produce proposals for discussion. I appeal to her not to spoil what could be regarded as a reasonably good day for people affected by hepatitis C and HIV by virtue of the provision to establish an insurance regime by attaching to the legislation features which are objectionable to those concerned.

As an Independent Deputy, I carry no baggage, I am not obliged to go out and bat for any particular party and I am free to speak my mind and vote accordingly. At all times, I attempt to judge each issue on a rational basis. To the confusion of many Members, I sometimes vote with the Government and, at other times, with the Opposition. All Deputies should operate in this fashion and vote at all times on the merits of the issue. On this issue it is clear that any caring, concerned and compassionate Deputy must vote in accordance with the request of the four advocacy groups, the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive. These four organisations have done extraordinary work on behalf of the people affected and have a wealth of knowledge, bank of information and high degree of competence. As such, their expertise in this area cannot be ignored in this instance.

Photo of Seán ArdaghSeán Ardagh (Dublin South Central, Fianna Fail)
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I propose to share time with Deputy Carey.

Photo of Cecilia KeaveneyCecilia Keaveney (Donegal North East, Fianna Fail)
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Is that agreed? Agreed.

Photo of Seán ArdaghSeán Ardagh (Dublin South Central, Fianna Fail)
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Deputy McHugh made an excellent and substantial contribution. I listened to many other speeches and read those I did not hear. I also read the Bill, examined the proposed amendments and read the representations made by the Irish Haemophilia Society, the only submission I received by electronic means.

The substantive part of the Bill relates to insurance for people who have contracted hepatitis C as a result of anti-D given to them in negligence by parties for which the State has accepted responsibility. The insurance package, the first of its kind in the world, is a major, innovative and generous one and has been accepted by the groups representing those who have suffered as a result of the negligence of certain parties in administering anti-D blood products. This feature accounts for 90% of the Bill.

As other Deputies have eloquently articulated the benefits of the insurance package, I will not repeat them except to note that it is a fabulous package which I am delighted will be introduced. I hope many of those represented by several guests on the "Prime Time" television programme last night will benefit from this package, both in this country, in terms of the mortgage protection they will be able to obtain when purchasing a house, and abroad, in terms of the travel insurance they will be able to obtain in a few months.

Although sections 1, 2 and 6 account for just 10% of the Bill, they have been the focus of 99% of the substance of contributions. Difficulties always arise when legislation is enacted rapidly or hurriedly, as was evident in the original legislation on nursing home charges. Nobody would argue, for example, that the recent Criminal Law (Sexual Offences) Bill on statutory rape is perfect and covers all the issues. While I can understand the reasoning behind the decision to frame sections 1, 2 and 6 in this manner, I have some comments to make on them.

I have known a number of people who have suffered as a result of the negligent use of blood and blood products. For several years, a very good friend of mine was consumed with anger at the negligence of so many parties. The woman in question and her family suffered terribly as a result of this negligence for which the State has taken responsibility. Fortunately, however, as a result of good family support and a good frame of mind, my friend laughs and smiles, enjoys life to the full and lives for today and tomorrow. The fact that her family has sufficient financial resources makes her more determined to ensure the State pays for the terrible wrong perpetrated on her and, more importantly, other sufferers who may not be as well off. The extra few bob will assist those affected in overcoming the difficulties in their lives. I also had a very good friend, a haemophiliac, who died as a result of AIDS which was contracted through this process. I have, therefore, strong feelings on the representations the advocacy groups have made on sections 1, 2 and 6.

Sections 1 and 6 are broadly similar in terms of the way in which a hepatitis C diagnosis is recognised. I understand the current position is that the condition can be recognised on the basis of a diagnosis made by a consultant hepatologist. The Bill provides that the diagnosis of hepatitis C will be done by independent, objective means. The original text provided that this would be done using the ELISA test. The Tánaiste has obviously listened to the representations made by various parties and the contributions made in the House. I note, for example, that amendments Nos. 4, 7 and 42 in the Tánaiste's name provide that the recombinant immunoblot assay test and PCR test will also be accepted. In addition, she says she will put into the regulations a system whereby if it is shown that any other test can be included, or if the way medical professionals analyse the results of the tests changes, the regulations would be changed. Every effort is being made to ensure that everybody who has contracted hepatitis C as a result of the negligence of parties for which the State has taken responsibility will receive compensation and the health card. The only argument is that we cannot just take the diagnosis of a consultant hepatologist. With science advancing so far and so fast it is reasonable to say there should be some independent, objective, scientific tests, which are available. While I can understand the Tánaiste saying that, I am concerned that she did not consult fully with the Irish Haemophilia Association, Positive Action and the other groups before she put this legislation on the books. I would have preferred if she had done that.

It is difficult to say what I want in the one minute remaining. I have some problems regarding the relationships of children of current hepatitis C sufferers and their future relationships. Based on the strength of feeling on all sides of the House, the speed with which the controversial sections of the Bill were put through and the deep concern of the victims and their representative bodies, I would like the Minister to give an undertaking to have substantive talks and consultation with the various groups after this Bill, inevitably, goes through and, if necessary, to put forward a short amending Bill after the summer to remedy any items she sees as worthy after consultation.

Photo of Pat CareyPat Carey (Dublin North West, Fianna Fail)
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Having listened to many speakers and listened carefully to playbacks of most people's contributions over the days since this debate began, something I rarely do, I will try to avoid being repetitive. I do not know what I can add. This is an attempt to right a grievous wrong. Although much of what is proposed is along the right lines, it would be less than honest of us not to mention some outstanding concerns which need to be addressed by the Tánaiste either in her reply on Second Stage or on Committee Stage. An earlier speaker said this Government is guilty of compassion fatigue. It is not. The best motives are behind this legislation. DeputyArdagh mentioned somebody he knows who has hepatitis C and without knowing it my first appointment this morning was with somebody who has hepatitis C, with whom I discussed his inability to get mortgage cover. In the course of conversation it transpired that many of this young man's colleagues, in a profession where a high level of comprehensive motor insurance is required, often find the only way to get motor insurance is online. This is because if they are asked a straight question about whether they have hepatitis or any other disease, they would have to answer in the affirmative and are likely to be told they cannot get motor insurance.

I must declare an interest. I am one of the trustees of the Irish Diabetes Federation. Through this I have gone through, in a less dramatic way, some of the issues these people are going through regarding barriers that have to be breached. It is difficult to breach barriers. For example, every year I have to ask a consultant to sign a declaration that my condition has not deteriorated and that I am not a danger to the public while driving a car. I am also a carrier, but not a sufferer, of haemochromatosis, which is in my family. One never knows when it will become an inhibiting factor to one's entitlements.

The Government is bearing in mind many of the fears people have. The four groups most deeply involved, the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive, have some concerns that must be allayed. Discussions are going on as to how those concerns can be addressed. I was in the Chair earlier when we received copies of the further amendments on the second test proposed by the Tánaiste. That is welcome. With the science developing around this condition it will be possible to have more definitive testing and more accurate diagnosis. A formula must be found to allow some aspect of this legislation to be revisited and to allow barriers that may present themselves now to be removed. For example, no bona fide evidence that might emerge should be excluded. I will not elaborate on the caveats on this. The number of people is not large and the cost will not break the State. Compassionate grounds are not always a good reason to do something. Actions should be taken because they are right. However, even if it were to be done on purely compassionate grounds, there are good grounds for examining the sections of this Bill that are of genuine concern.

It is rare in this House that people from all parties articulate approximately the same concerns. There will always be one or two who cannot resist the temptation to revisit the Fianna Fáil tent, which I have never been to, in Galway or elsewhere where we are all said to spend our personal and political lives. Aside from this I heard good contributions, particularly from Deputy Kathleen Lynch yesterday. I take on board what she has said on behalf of groups and would like to be associated with the type of suggestions she and the people she works with are trying to bring forward.

There is an opportunity in this legislation to be inclusive without weakening the position of the State. While I understand that officials in the Attorney General's office are always looking over their shoulders at precedents and knock-on effects, it must be possible for a response to be made between now and the enactment of the Bill to address most, if not all, of the concerns that have been articulated by Members and people who are probably in the Visitors Gallery or elsewhere in Leinster House. It must be possible to make a provision that will allow for this legislation to be revisited. We do it often enough. Amendments to Bills have often been brought in here at short notice. That possibility should not be excluded. With those caveats I welcome the Bill and look forward to further debate on it.

Photo of Damien EnglishDamien English (Meath, Fine Gael)
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I am not an expert in this but I share the frustration of most people with Bills being shoved through at the last minute. I welcome the contributions of the two previous speakers who made their views clear. It is good to see that Members on both sides of the House can say what they honestly believe. I hope somebody will listen and that some proper changes will be made to this Bill.

We have waited a long time for this Bill. People frequently asked on the Order of Business when it would be before the House. We all expected it to be a straightforward Bill that we would simply pass to do good for some people, but that has not happened. Many who called for the Bill assumed it would be a good Bill, not one that contained some sneaky elements and that did not deal with the intended subject.

It is sad that we are trying to debate and change this Bill in the last few minutes of the session, under a guillotine. The Bill was intended to cover insurance matters, namely, life assurance and mortgage protection, eventually extending to travel insurance and so on. It contains, however, hidden changes that nobody envisaged. I do not understand how this can happen after 18 or 20 months of negotiations on the Bill, never mind that the whole area has been discussed for nine or ten years, long before my time in this House. This sneaky move, being slipped in at the end of Dáil business, after a busy year, is a disgrace. The Tánaiste told us that this Bill has broad agreement, but that is far from the case. It is a con job and a let-down for all the groups involved in the negotiations over the past few months, causing more unnecessary hurt where there has been enough and where there will be more.

How did this happen and why did the Bill change in recent weeks? I am not an expert on health or hepatitis C and I would like the Tánaiste to explain why she is introducing changes to sections 1, 2 and 6. She can do this in medical terms or preferably in layman's terms so that ordinary citizens can understand the motives behind such an underhand and unnecessary move. I recall speaking to those involved when this House previously caused them pain. They had taken legal advice but said they would never do so again, instead they would use their hearts and make sure to do the right thing by the people whom the State had poisoned.

I cannot believe that any politician, having heard those people, could bring forward another such Bill. Those behind the Bill who want to say it was an error or a misjudgment should say so. They should not try to defend it or cover it up and make it worse. We could put our hands up, say we got it wrong and show some respect for people who deserve much more.

We should be trying to do some good for those who have suffered and not cause more hurt, which is not what we came here to do, and it is not what I want to do. We are here to help as often as we can and to do the right thing. Passing this Bill without proper amendments would be wrong. Anybody who votes for it should hang his or her head in shame. We do not often get a chance to do some good at the stroke of a pen. Why does the Government have to meddle in a Bill after negotiations, only to complicate and confuse it, rendering it improper?

The move to tighten up compensation for hepatitis C is changing the goalposts. People require confirmation of infection through a blood test rather than a doctor's diagnosis, based on obvious symptoms. This is a disgrace and a slap in the face for people who have suffered enough at the hands of various Governments. It is disgusting. The Tánaiste claims the test will not be open to abuse, as if people would try to abuse or take advantage of this. I do not believe people would do that. Common sense and cop-on are needed here. It is our duty to show care, not its opposite, to those who hurt.

The Bill was intended to deal with life assurance and mortgage protection, which is worthwhile and is badly needed, but instead it is a sneaky and bad Bill. The Government's callous moves will definitely affect up to 100 people and possibly, to judge by today's figures, 250 people. The Bill is neither fair nor compassionate governance and I do not wish to be involved in its passage. I have not fully researched this area but I do not support this sham.

As a young politician I become more embarrassed by this Government and this House as the days go by. I had a vision of democracy that worked for everyone and did not go out of its way to hurt people, as this Bill does. The Government is a let-down. How nice it would have been to vote for something simple and good that would help those who were poisoned by the State.

We hear that amendments and partial climb-downs by the Tánaiste are on the cards, but the two amendments tabled do not go far enough. Having to make amendments is wrong in the first place. Why did it have to come this far? Why did the Tánaiste decide to make slight changes only after pressure from people on all sides of the House and after seeing the tears in the eyes of people in the Gallery and elsewhere? Why did she go behind the backs of these people after months of negotiations? That is underhand and bad for politics. I am surprised and disappointed by the Tánaiste for whom I had respect.

People talk about rushing legislation, as if we did not have time in the past to do it right. They speak as if we are being forced to rise next week and not come in during July, August and September. There is no need to rush. We can easily come in here next week and the weeks after that to discuss this and many other topics, and make proper legislation. To rush matters through as if it helps somebody is an illusion and does not help. This House could easily sit all night tonight, all night tomorrow night, Saturday, Monday and Tuesday, and it does not have to rise on 5 July. That must change but I will not go into the detail now. Legislation deserves time, proper debate and negotiation, not false negotiation which results in changes afterwards.

Rushing legislation through is normally wrong and bad but in this case it is hurtful and morally wrong. It opens further many old wounds because people realise that the Government is prepared to let them down again. That is amazing. Why do the Tánaiste and the Department of Health and Children continue to be so cruel? The country can afford to do the right thing, not shameful things. Deputy Carey was right, this would not break the bank, far from it. Perhaps various people will try to argue that what they are saying makes sense medically — some of the speeches last night in which that argument was made insulted our intelligence — but it certainly makes no moral sense when one considers that the State wronged the people in question.

The Bill provides that insurance, relative to their age group and the people in the same category as them, will be made available to the victims who apply for it. Many victims have been waiting for years to get life assurance or proper mortgage cover. This provision might be too late for some of them. It is wrong to put such people in the same category as people of the same age. The insurance that is available to them should bear some relation to the insurance they would have been able to receive at the age when they first wanted to take out insurance, living cover and mortgage cover etc. It should not matter whether that was five, six or ten years ago. We should not provide that it should relate to a person of their own age now. One's life assurance gets much dearer as one gets older. We have to consider the cases of people who were unable to take out a mortgage or buy a house. The victims have missed out on many opportunities. We should not just square it off by saying that the insurance of a person who is 55 years of age should be set at the same price as that of someone else who is 55 years of age. That is not on. It is not good enough. This legislation does not go far enough for the sake of a few euro.

On the issue of loss of consortium or full marital enjoyment, it is wrong and unfair that compensation will not be paid to couples who knew, before they started their relationship, that one of the partners was infected. If I understand this provision correctly, hepatitis C victims are being singled out unnecessarily. Not all relationships last forever — people sometimes want to move on and start afresh. We certainly should not do anything to make that process more awkward or complicated, or even to draw attention to it. It is wrong and unfair that we are nit-picking in this way. It is normal nowadays, for various reasons, to have more than one relationship over the course of one's life. People may choose to end relationships or unfortunate circumstances may force that to happen. It is quite common in today's age to have a few relationships. We should not try to draw attention to it as something that is different.

We owe a great deal to the people about whom we are speaking, who were poisoned by the State. We should not insult them with something like this. We have a duty of care to them and a moral duty. Anything less is a disgrace, wrong, unfair and embarrasses this House.

Photo of Tony KilleenTony Killeen (Clare, Fianna Fail)
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The Government has proposed the Hepatitis C Compensation Tribunal (Amendment) Bill 2006 to provide for the establishment of an insurance scheme for persons infected by blood and blood products administered within the State. The sad history of the infection of blood and blood products with hepatitis C and HIV will never be erased. Families continue to experience the hurt and sadness these pernicious viruses have brought to their lives. The Government is facing up to its responsibilities by introducing this legislation.

I understand that on last night's "Prime Time", the State was accused of funding the insurance scheme by curtailing people's right to compensation. I have been assured this is incorrect, as additional funds have been agreed by the Government to finance the scheme. It is made clear in section 4 that a special account, to be funded by the Oireachtas, will be established for the scheme. This legislation amends the Hepatitis C Compensation Tribunal Act 1997 by inserting in it a new section 5A, which will make it clear that the special account that will be established to pay for the compensation tribunal cannot be used to fund the insurance scheme. As there has been some confusion in this regard, it is important that we make clear exactly what is provided for in this aspect of the legislation.

Officials from the Department of Health and Children and representatives of the Irish Haemophilia Society, Transfusion Positive, Positive Action and the Irish Kidney Association have worked together closely over the years to shape policy in a way that optimises services for people with hepatitis C and HIV. It is important that the relationships that have been built up over the years are not damaged by the outcome of this debate, anything that is said in the House or anything that might arise from the manner in which this legislation is dealt with. It is right and proper that each of the organisations gets financial support of more than €1.5 million per annum to help them to meet their administrative costs, to do some hugely important work and to support their members. I have been told by officials from the Department of Health and Children who have attended some of the functions and AGMs of these groups that they are aware of the strong role the organisations play in the lives of their members. The officials have told me that if a member of one of the groups is ill or is experiencing difficulties, the organisations' executive members handle such cases as if the people affected were members of their own families.

Any Member of the House who has had the experience of having a family member stricken by an illness or a debilitating condition will have found, as my family has found, that it is not always immediately apparent in such circumstances where one should turn to for support. The supports and entitlements available in such cases are far from apparent. When my family found itself in such circumstances, information was not even readily available to outline the effects of the condition on the person who is affected and on the family. Regardless of the type of State apparatus that is in place, it is hugely important for people who are struck by illnesses to be able to avail of alternative support systems. I thank and pay tribute to the four essentially voluntary organisations which are providing such support in this instance. It is important that the links forged between the organisations and the officials continue to remain strong.

It is inevitable that there have been accusations of bad faith in relation to a supposed lack of consultation on certain sections of this legislation. The Tánaiste has explained that the sections in question have been included in the Bill to address legal difficulties. The Government was advised that as those matters were the subject of litigation, they could not be discussed or negotiated in advance of the publication of the Bill on 20 June last. I listened to Deputy English some moments ago, just as I have listened to parts of this debate over the past two days. People outside the House sometimes have difficulty coming to grips with the practice in this House whereby Opposition Deputies use every opportunity that arises to take shots at the Government. Perhaps the Government is sometimes at fault in giving the Opposition too many opportunities to take such shots — there is always an element of that. I do not think such behaviour is helpful in this instance, however. We have been given an opportunity in this legislation to improve the current system and we should concentrate on doing so, as much as possible. Significant improvements can and will be made on foot of this Bill.

The central intention of this legislation is to provide for the new insurance scheme. It has become clear to the 1,700 or more people who are infected with hepatitis C that their efforts to obtain life assurance or mortgage protection cover are adding to the damage they have already suffered. This issue has been highlighted by the consultative council on hepatitis C since its first meeting in March 1997. We need to acknowledge that one of the most frustrating aspects of this saga has been the length of time it has taken to advance some of the issues which needed to be resolved. As no similar insurance support schemes were in operation in other countries, unfortunately, the Department of Health and Children retained a firm of consultants with experience of insurance and financial products to research the feasibility of establishing a scheme here. When this work was completed and it was clear that a scheme could be established, the next phase of work, which involved devising the scheme's parameters, was commenced. The draft scheme was given to the representative groups when this second phase was completed. They worked through the documentation and the rules of the scheme to try to address their members' needs. The officials in the Department of Health and Children were open to the groups' suggestions and I understand they took on board the vast majority of those recommendations. While the scheme has some limitations, for example in the maximum sum insurable, it seeks to address the situation in as fair and equitable a manner as possible. The amounts allowable for mortgage protection, for example, are in keeping with Dublin house prices, plus 25%. Assurance limits are also linked with the consumer price index to ensure the scheme's limits keep up with inflation.

The representative groups were keen to protect the rights of young people who may not be ready to take out life assurance or mortgage protection. Many young people remain in college until well into their 20s and so would not have sufficient income to consider purchasing a home or taking out life assurance. For this reason, there are no restrictions or penalties on young people entering the scheme until their 30th birthday. After that age, there may be a waiting period if individuals are deemed uninsurable.

The scheme's regulations, drafting of which will commence immediately on the enactment of the legislation, will be drawn up in consultation with the representative groups. This is vital to ensure entry into the scheme and its administration is as user-friendly as possible.

It is important to take account of the import of regulations which amount to de facto secondary legislation. There will be an opportunity during the preparation of the regulations to address some of the concerns voiced in recent days. That is one reason why it is important that the good relations built up between officials in the Department of Health and Children, the HSE and the representative groups be continued. It is important to the efficacy and outcome of the regulations that these parties can work together to reach a satisfactory outcome.

Confidentiality is an important aspect to these cases. I am pleased the Bill contains a section outlining the offences and penalties if anyone in the chain of the insurance scheme breaches the confidentiality of claimants. Much debate has taken place on the definition of the diagnosis of hepatitis C and how the Bill serves to restrict access of people infected with hepatitis C to the tribunal and other supports provided to victims. The Government examined this issue in detail in advance of bringing the legislation forward. It is satisfied the definition of diagnosis includes the ELISA, RIBA and PCR tests. The provision that will allow other tests that may emerge is robust. This will be the subject of an amendment on Committee Stage.

Last month I met three members of the representative groups in Clare. I was impressed by the manner in which they presented their cases and concerns. The principal concern then was that they could read the legislation before its publication. The Tánaiste and Minister for Health and Children has explained how this posed a legal difficulty. I am disposed to accept her explanation. During the 14 years I have been a Member, I have encountered many lobby groups. I was hugely impressed by the professionalism of the approach and the presentation by the hepatitis C representative groups. I was also impressed by a telephone call I received yesterday from one of the representative groups setting out its current concerns. Hopefully, some of these concerns will be addressed in the amendments tabled by the Tánaiste and Minister for Health and Children.

There is considerable agreement on the insurance scheme. Many would have expected this area to be the most difficult on which to reach agreement. There is a temptation to respond to the naked political points raised but it would not serve the debate or the victims well. It would not be conducive to producing legislation which serves the best interests of the sufferers.

I was surprised at Deputy English's extraordinary claim that having to make amendments is wrong. The job of the Executive is to propose legislation. The principal function of the Houses of the Oireachtas is to examine the proposed legislation and amend it as appropriate. No member of the Government or any other Member is the exclusive owner of all intelligence when introducing a Bill. When I have brought Bills through the Houses, I have been more than happy to listen to good cases for an amendment from Opposition spokespersons and have been willing to accept some. If Members concentrated more on the shortcomings of the Bill, they might do a better job for the beneficiaries.

Deputy English also threw in the old chestnut of the Dáil sitting all night tonight and all through July and August. Not many people are fooled by this ploy. Nor are people fooled when hearing the line there is an enormous hurry with the legislation, only to be followed by the line that there is no real hurry. The debate needs to be approached with a level of responsibility and acceptance that this is a serious issue for those infected and their families. The Government has attempted to address those concerns within parameters in as constructive and fair a manner as possible.

Some of the charges made against the Tánaiste and Minister for Health and Children were unsubstantiated and groundless. While I sometimes find it easy to disagree with her on some issues, I always find her approach honourable, open and, in cases such as this, compassionate. I have no doubt she considered the points made to her and will further consider them in opportunities which will arise.

With the introduction of the insurance scheme the State will have addressed a major inequity suffered by a number of its most vulnerable citizens. The travel insurance aspect of the scheme needs more detailed work as the parameters of it need to be agreed. The best work will be done in this area if the people who know about the difficulties and the departmental officials are allowed to chart a course to reach the best possible outcome. People in the representative bodies will find the Government open to constructive suggestions in this regard. The State has given an undertaking that the travel insurance scheme's framework will be developed within six months of the commencement of the overall scheme.

It is unlikely to be the last chapter in this saga. There are concerns which the representative groups feel have not been adequately addressed in the legislation. Further opportunities will arise to fine-tune the legislation. It is the Government's intention that this will be done in as constructive and open a manner as possible.

2:00 pm

Photo of Joe CostelloJoe Costello (Dublin Central, Labour)
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The Minister of State at the Department of Enterprise, Trade and Employment, Deputy Killeen, referred to unwarranted attacks by the Opposition on the Tánaiste and Minister for Health and Children and the Government for the manner in which the Bill was introduced. I do not agree with him. Any attack was entirely warranted and appropriate. In 1994 the organisations representing the victims initially proposed an insurance scheme be put in place on a statutory basis. It was promised by the then Minister in 2004 and then again for January 2006. The Bill was then produced out of the blue. It was only on 20 June 2006 that the representative groups first learned of the Bill's contents. These are groups that are very active, have engaged in consultation and were available at all times. They have met the Tánaiste and her officials and are clearly representing the best interests of all the people who have suffered from infected blood transfusions.

I object to the manner in which the legislation has progressed through the House. The Bill only appeared yesterday when a few hours were provided to debate it. Likewise, another few hours have been provided to debate it today, with no break between Second Stage and Committee Stage. In an hour's time, we will vote on the Bill and the amendment to it tabled by Deputy McManus. In another hour and a half, we will vote on the entirety of the Bill once Committee, Report and Final Stages have concluded. That is no way to deal with important, sensitive and substantial legislation. The Minister of State, Deputy Killeen, is as aware of that as anyone else. The Government is deliberately rushing through the Bill in the dying days of this Dáil session so it can be dealt with as quickly as possible to get it out of the way. That attitude is not good enough, nor is the use of the guillotine in this fashion.

Another reason this side of the House is attacking the Government on the Bill is that it was published without any explanatory memorandum. It is unimaginable that important legislation would be published without an explanatory memorandum. That clearly indicates the legislation was rushed and the Parliamentary Counsel had not got around to drawing up an explanatory memorandum. The legislation is complicated and would benefit from explanation. For all these reasons I have no hesitation in saying that in the manner in which the Tánaiste has introduced the legislation, she has been less than fair and reasonable towards Members of the House and those who are affected.

Despite the points that have been made, I believe Members on all sides are in favour of getting a fair resolution to this scandal of State negligence. While that is the case, I believe the Tánaiste has handled this issue in a manner which more reflects the mandarins in the Department of Finance and perhaps some of her officials. I would like her to tell us clearly whether some pressure has been brought to bear on her by the Department of Finance and her officials to introduce the changes in this legislation. They are acutely aware of all the money that has been spent and they appear to consider the spending of money to be more important than dealing with the needs and concerns of those affected.

An incredible amount of money has been spent by the Government on wild goose schemes. Nobody is contesting the liability of the State on this issue. It is clearly acknowledged that the State is fully liable for the infection it has caused to a large number of people who will suffer for the rest of their lives as a result. In addition to the effect this has on everything they do, we must not forget the effect it has on their friends and families. I accept it will be difficult to get everything right. That is at the heart of the matter.

The Minister of State, Deputy Killeen, stated he has met constituents who are affected, in addition to representatives of the victims' groups. No doubt all Members of the House have come into contact with somebody who has suffered from hepatitis C as a result of contaminated blood transfusions. We are all acutely aware of the issues involved and this behoves us to ensure that, at last, we bring finality to the situation. We should ensure we do so in a manner which does not create more bitterness or disillusionment with the ability of the institutions of the State to deliver a fair and final resolution.

We are putting the case to the Tánaiste to let her know she has got the legislation wrong. She has made a mistake. She was relying on outdated diagnostic testing mechanisms. She has not been brought up to date on modern methods of analysis. Questions have been asked about the reliability of the ELISA test. As a result of that, it is essential that the Bill does not proceed any further until such time as the Tánaiste has the opportunity of reaching a formula with the groups representing the victims which everybody can agree and stand over. The legislation must be substantially amended.

Without doubt, the State is liable for the infection. There is also no doubt that people who would otherwise be perfectly healthy have, through no fault of their own, found themselves infected to a degree that will be with them for the rest of their lives. This lunchtime on the "News at One", the Minister of State, Deputy Tim O'Malley, stated that compensation awards of €580 million were paid out, as though the State was being generous. It was the State's responsibility to compensate people. It had no choice in the matter. The State had to fulfil its responsibility as not to do so would have further compounded the original negligence.

It was also reported on the "News at One" that the Tánaiste had issued a statement to the effect that she would not introduce, or allow to be introduced, any major amendments to the legislation. That is the position as of one hour ago. The Tánaiste has introduced legislation that seriously amends the existing compensation scheme. It is ironic that although the purpose of the legislation is to give extra benefits to people who have suffered, in terms of the compensation award, medical care and the provision of insurance, instead of conferring extra benefits, all benefits will be taken away from people who have not tested positive under the ELISA test. That will be the impact of the legislation and this gives the game away.

The Tánaiste is trying to prevent a new category of people who may have been below the cut-off threshold of the previous diagnostic system which has been superseded by more up-to-date technology. It is estimated that approximately 74 people will not benefit from any aspect of the legislation or the previous compensation tribunal. Either a very petty approach is being taken or the Department of Finance has indicated, as it has done in the past, that it believes the scheme is open to abuse and that people who are not genuinely entitled to claim will do so. We hear this approach all the time from the Government. Let us take, for example, the Minister for Justice, Equality and Law Reform, Deputy McDowell. He believes that people who disagree with him on policy are not genuine and are trying to milk the scheme. The Department of Finance is imposing its narrow criteria to put a cap on this scheme and avoid paying out further money. The Tánaiste and Minister for Health and Children must respond to this in a meaningful way. This legislation is being rammed through the House, in breach of all procedure, without an explanatory memorandum, at the dog end of the session and now there is a twist in it aiming to exclude people who would otherwise, rightly, be included.

I am sure the Minister of State at the Department of Enterprise, Trade and Employment, Deputy Killeen, has spoken to organisations that were directly involved in the consultation process such as Positive Action, the Irish Haemophilia Society and the Irish Kidney Association. The Tánaiste and Minister for Health and Children has put on record that she has also done so. Nonetheless, this group of organisations has issued a statement saying:

The Tánaiste and Minister for Health and Children published the Bill on 20 June 2006. The Department of Health had been in negotiations with the above groups to provide a scheme for insurance for persons infected with hepatitis C and HIV so that they could obtain insurance on the same basis as other persons. Regrettably the Tánaiste proposes in the Bill to make fundamental amendments to the Hepatitis C Compensation Act 1997 which will significantly limit the categories of persons entitled to make claims for compensation and for provision under the health code. Our groups were not informed, until 20 June, of these radical proposals which are unacceptable and which should be opposed.

If the consultation was as adequate as the Tánaiste and Minister for Health and Children suggests, which the Minister of State at the Department of Enterprise, Trade and Employment, Deputy Killeen, seems to support, why was this kept under wraps? There is confidentiality and there is confidentiality. This Bill has come out of the blue at loggerheads with the direction the groups perceived the Tánaiste and Minister for Health and Children was headed. This begs the questions, what went on and why does the Tánaiste and Minister for Health and Children, through a cloak of confidentiality, try to deflect attention from what really happened? This is a cheap shot and she should explain why those negotiating for the victims were left out of the loop in the preparation of this Bill. It is not satisfactory to have the Bill sprung on us and expect it to be dealt with in such a short space of time.

Deputy McManus, the Labour Party spokesperson on health and children, has tabled an amendment:

[H]aving regard to the fact that the Bill contains matters unrelated to the issues that were the subject of extensive discussions with interest groups representing affected persons and the additional matter adversely affects the interests of those persons and further having regard also to the failure of the Minister for Health and Children to publish an Explanatory Memorandum outlining her reasons for including the additional matter; Dáil Éireann declines to give a second reading to the Bill.

I think this is how we should proceed in dealing with this legislation. People were ignored regarding the contents of the legislation so negotiations held were not meaningful in terms of putting in place a structure to deal with all the affected people and who may not yet have been diagnosed but may be diagnosed in the future.

We have to get to the bottom of the matter because that is the nub of the situation. A gulf has been created between the Government and the groups representing the victims and it creates a question mark over the bona fides of the Tánaiste and Minister for Health and Children. She aims to ram through this legislation despite question marks over the scientific basis for diagnosis. A number of Deputies have quoted the Finlay report which makes it quite clear that the ELISA test has been superseded by new findings relating to the manner in which people infected with the 1977 anti-D virus are treated. It states in appendix G:

We now have evidence that it is also possible, although apparently rare, for a person to be infected and subsequently lose both detectable virus and detectable antibodies. This happened in the case of Donor Y. While we have no laboratory means of identifying these persons we have, however, taken a history of symptoms or signs from those who received the blood transfusion anti-D. We are thus aware of 74 recipients of 1977 anti-D who had an episode of jaundice at that time which is most likely to be related to the exposure to hepatitis C. As these persons do not show any reaction in laboratory tests for hepatitis C an epidemiological study is planned to investigate transient infection which has subsequently cleared.

This shows that 74 people have been identified as having hepatitis C, yet this did not become apparent in ELISA tests. There are, undoubtedly, more people in the public domain who have not yet been diagnosed. The Tánaiste and Minister for Health and Children stated in her speech: "There will be a third form of recompense in the form of an insurance scheme." She pointed out that:

To ensure a consistent approach to all three supports [compensation, the special health service and insurance] the Government agreed that a hepatitis C diagnosis would be defined by a scientific test, the ELISA test for chronic infection and certain defined symptoms of acute infection ... The symptoms linked with hepatitis C include fatigue, aches [and so on.]

She goes on to say: "[the] diagnosis will be determined by means of an internationally accepted test". More importantly she asserts that: "the ELIZA test is accepted internationally as the standard method for diagnosing hepatitis C for the purpose of health care services".

This is the Tánaiste and Minister for Health and Children's statement on how people will qualify for all related benefits from now on. The legislation reflects this although it is totally undermined by the findings of the Finlay report. The counsel's advice on this is that:

[T]he proposed amendment means that a person would not be entitled to succeed in a claim for compensation before the compensation tribunal unless that person could show that they had a positive ELISA test, or had jaundice or raised Alt levels during the 16 weeks after the person had been administered anti-D.

This is a very severe restriction and it clearly shows that the ELISA test is not an adequate mechanism any longer.

All sides of the House are anxious to find a reasonable solution to this matter. I do not accuse the Tánaiste and Minister for Health and Children of bad intentions in this matter. I think she has been misled by mandarins behind the scenes in the Department of Health and Children and in the Department of Finance who have put the squeeze on her to ensure a Bill we expected to relate clearly to insurance in fact changes the diagnostic testing determinant.

Clearly that is the case and for that reason, we must stand on the side of the sufferers, the people who were infected, their families and friends and oppose this legislation.

Tom Parlon (Laois-Offaly, Progressive Democrats)
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I am happy to join my colleagues in acknowledging the pain and suffering that has been inflicted on a large number of our citizens as a result of hepatitis C and HIV infection and the involvement of the State and others in the administration within the State of infected blood products. This is an emotive issue and many speakers have been very fair in dealing with the it and have tried not to raise emotion levels any higher. What we need to do today is seek a reasonable solution and what the Bill offers is a major breakthrough in terms of where we are coming from. If there are shortcomings, certainly they should be raised here and we will try to deal with them by way of amendments.

Most Deputies have referred to the good faith of the Tánaiste and Minister for Health and Children, which is not in question, although some have inferred otherwise. She must take all of the advice that is available to her, whether it be from the Office of the Chief State Solicitors, the Office of the Attorney General or elsewhere.

Three forms of support will be put in place for infected persons as a result of the enactment of the Bill. The first, which is quite important, is compensation. Clearly, as many Deputies have already said, compensation in monetary terms can never set right the wrong that has been done. On the other hand, as the old saying has it, "money makes the mare go". Compensation is important in terms of supporting people going forward. To date awards have been made to approximately 2,200 people. The tribunal was put on a statutory footing in 1997. It allowed people to make claims for compensation in a non-adversarial fashion. Claimants could also appeal to the High Court. Persons infected, their spouses, partners and next of kin have been presenting their claims to the tribunal since its establishment. The total cost of the tribunal at the end of 2005 was over €600 million, which included legal fees, administration costs and so forth. From that total, the cost of awards was approximately €580 million, which is a substantial amount of money.

The second support that will be available on enactment of the Bill is the special health card, the Health (Amendment) Act card, which will entitle the holder to a range of health care services free of charge. Having met a number of the sufferers, I know it is important for them not to have any financial exposure from dealing with the health service going forward. Health care costs under the Health (Amendment) Act are approximately €15 million per annum.

The expert group on hepatitis C, which is chaired by the Department's chief medical officer, includes a representative of the leading liver consultants and a member of Positive Action. The group agreed in 1998 that eligibility for the card should be on the basis of a positive diagnostic test for hepatitis C. This is an issue that has been discussed at great length, in terms of the ELISA test, its suitability and advances made in that test in recent years.

The Department is preparing a detailed guide to the services available under the card, which include hospital care, primary care, home support and a new nursing home scheme, which is being piloted in the eastern part of the country this year. The representative groups have been involved in shaping the development of these new services and it is important that they meet the needs that exist.

The third support to be put in place with the enactment of this Bill is the life assurance scheme, which is expected to cost approximately €90 million over its lifetime. It is expected to run for at least 30 years. Several speakers referred to the fact that people were having difficulty with travel insurance, life assurance and so forth. That was a major difficulty but under the new scheme, the State will pay the additional risk premium where the life assurer is willing to provide cover, subject to an additional premium, or will assume the risk on the life cover where the assurer is not willing to provide cover. When the Bill is enacted, the assurance scheme will bring major peace of mind to the people who were previously having difficulty obtaining cover. Most people take it for granted that they will get life assurance and travel insurance cover. In this case, the State is underwriting the cover, which will give much solace to the people involved.

The tragic episodes of infection of blood and blood products took place in 1977 and again between 1991 and 1994. Since then, every effort has been made by the State to make recompense to the victims of that terrible scandal. A multi-million pound investment was approved in the late 1990s to support the reorganisation and redevelopment of the Irish Blood Transfusion Service to make sure such a tragic eventuality, with all of its terrible consequences, would not happen again. The primary objective was to ensure the Irish Blood Transfusion Service was resourced to provide a transfusion service in line with best international standards.

Significant additional resources were made available to the IBTS to support various programmes, including the provision of a new national headquarters, the development of a new components processing laboratory and other improvements at the Cork centre, the implementation of a new IT system, the introduction of new technologies such as PCR testing and other services to improve the safety of the blood supply. Additional senior staff appointments were also made, which have resulted in the establishment of new personnel and finance departments. Clearly the State has had a major involvement, and made a significant investment, in the upgrading of the blood transfusion service to ensure such an eventuality never happens again and that the service complies with international best practice.

The Irish Blood Transfusion Service has introduced major new testing programmes in advance of most other international transfusion services. It continuously monitors international developments, such as guarding against emerging threats, for example, variant CJD. All of these developments will undoubtedly contribute to a modern, safe and efficient blood transfusion service to meet the demands and challenges of the 21st century.

Since the introduction of regulations to transpose the European directive on quality and safety of blood products, the activities of blood banks and blood establishments must be authorised by the Irish Medicines Board. Strict standards must be in place with regard to the collection, testing, processing, storage and distribution of human blood and blood products. Penalties are imposed on facilities that do not comply with the regulations. Not only has the State invested enormous resources in this area, it is also observing very strict regulations and imposing penalties where those regulations are not being adhered to. Significant funding has been allocated to ensure compliance with statutory requirements and I am confident this will result in improved hospital systems and traceability in terms of the blood transfusion chain. Many people on all sides of the House have offered their sympathy and support to the victims of infected blood and blood products, and I know that sympathy is not much use, it is action that is needed. The Bill that we are endorsing in the House today will certainly strengthen and enhance the services available to those with hepatitis C and HIV. All the representative groups have been very busy over the years, particularly in lobbying over the past 48 hours and articulating genuine concerns. Positive Action, Transfusion Positive, the Irish Haemophilia Society and the Irish Kidney Association have attended the House to lobby individuals from all sides with great enthusiasm and genuine depth of feeling. They have worked relentlessly with State officials from the HSE and the Department of Health and Children, putting in massive efforts regarding the difficulties that they have highlighted.

The State funds the representative organisations to the tune of approximately €1.5 million, and that is certainly a help. However, regarding the individual efforts made, the voluntary time and money expended would certainly dwarf that. There has been a spirit of co-operation in the House towards the representative groups with the aim that services might continue to be enhanced and developed. I am certainly extremely happy to give the Bill my full support and I look forward to its passage into law.

The much-needed insurance scheme can now be established to ensure that products for those with hepatitis C and HIV will be provided for them. This is the first scheme of its kind in the world, and I congratulate the Tánaiste on the major efforts she has made to establish it. She has once again shown how determined she is to reform the health service and this area in particular, which has blighted those infected for some years.

I will refer once again to the main provisions of the Hepatitis C Compensation Tribunal (Amendment) Bill 2006. Section 1 amends the definition of hepatitis C diagnosis in the Hepatitis C Compensation Tribunal Acts 1997 and 2002 to exclude those who do not test positive for hepatitis C from applying for compensation. Following enactment, this section will come into effect on 20 June 2006. Importantly, applications already lodged with the compensation tribunal will not be affected. No one who has made a claim over the past ten years will be affected by enactment of this law.

Section 2 amends the Hepatitis C Compensation Tribunal Acts 1997 and 2002 to exclude future compensation for the spouses and partners of persons where the diagnosis of hepatitis C or HIV had been made before the relationship commenced. That section will come into effect upon enactment.

Sections 3 and 4 establish a scheme to address the insurance difficulties experienced by persons infected with hepatitis C or HIV through the administration within the State of blood and blood products. The commencement date of those sections will be set by regulation. Certain benefits under the scheme will only be available for a 12-month period after the commencement date, and it will be necessary for the scheme administrator to be in place, application forms drafted, explanatory material printed and terms and conditions of the scheme published before its commencement. The details of this Bill are extremely important and I can understand the fears of those who have misread or misconstrued them, or failed to take them fully on board. All eventualities are covered.

Section 6 amends the Health (Amendment) Act 1996, which provides for a range of free health care services for injured persons to include the same definition of hepatitis C diagnosis as contained in the above amendments, that is, section 1 of the Hepatitis C Compensation Tribunal Acts 1997 and 2002. Upon enactment, this section will come into effect on 20 June 2006. Applications seeking to establish entitlement to relevant health care services lodged with the HSE before that date will not be affected. That element is also very important.

Approximately 20,000 infected or potentially infected vials of anti-D were distributed in the two periods between 1977 and 1979 and, unfortunately, between 1991 and 1994. Taking into account multiple applications to single individuals and the approximately 1,000 women who tested positive for the virus or antibodies, there are approximately 15,200 individuals who have never tested positive for either the virus or antibodies.

Under the existing Acts, diagnosis of hepatitis C is not defined. That has led to one High Court case and nine tribunal cases where compensation was paid to persons who did not pass the diagnostic test. The estimated cost of compensation, including the reparations fund and legal fees per person for general damages claims is in the order of €225,000, while the cost of special damages claims by eligible persons could add an indeterminate amount. The average cost of the ten cases referred to above in respect of which victims received High Court or tribunal awards is €275,000, excluding legal fees.

The 2002 Act allows spouses or partners to claim for loss of consortium, including but not confined to the impairment of the couple's sexual relationship. That was intended to compensate the spouse or partner who had entered into a relationship with the primary victim before either party knew of the hepatitis C diagnosis and whose relationship was adversely affected by it. The High Court has since made awards on appeal to persons whose relationships were formed after the date of diagnosis. The proposed amendment will clarify the position in that regard and will confine compensation, from the date of publication of the Bill, to persons whose relationships started before diagnosis, even where claims have already been lodged with the compensation tribunal.

The following are details of the infectious or potentially infectious anti-D vials issued and the maximum number of recipients at risk for the two risk periods. From April 1977 to October 1978, an estimated 12,460 doses of anti-D were produced, of which 4,026 vials were infected or potentially infected with the hepatitis C virus, HCV. Allowing for the administration of multiple batches to single individuals, a maximum of 3,959 individuals were at risk. From 1991 to 1994, an estimated 26,766 doses of anti-D were produced and 17,545 vials were infected or potentially infected with HCV. Of those, at least 1,208 were recalled by the Irish Blood Transfusion Service. In summary, 16,337 vials infected or potentially infected with HCV were issued in the period. Once again allowing for the administration of multiple batches to single individuals, a maximum of 12,250 recipients were found to be at risk. The total number at risk over the two periods from 1977 to 1979 and 1991 to 1994 was 16,209.

The annual reports of the compensation tribunal's awards contain a certain amount of high level information on awards, including their number and size. Owing to the diversity of claims, ranging from persons with severe liver damage to relatives burdened by loss of consortium, loss of society, mental stress or funeral expenses, the average award calculated by dividing the total number of claims by the total amount awarded is of limited use. The annual total cost of awards is set out in the tables and I will give Members that information. Last year the tribunal produced a table of cases where awards were made without ELISA tests. In a small number of cases, the claimants had evidence of suffering acute jaundice and it is important to stress that such cases will continue to attract compensation. They will remain entitled to compensation under the amended legislation. There is no information as to what influenced the tribunal to make awards in the other cases. Hepatitis C appeals in the High Court in 2004 were held in camera at the appellants' request. It is a matter of public record that one case in 2004 involved a person who did not test positive and appealed the refusal of the tribunal to award compensation and won.

I am happy to speak on this issue, give my full support to the Bill and look forward to its enactment and the establishment of a much-needed insurance scheme without undue delay.

Photo of Paul GogartyPaul Gogarty (Dublin Mid West, Green Party)
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I suppose five minutes should be enough time to speak on this issue given that so many people have spoken about it. I am not qualified to add anything new to this debate because I am new to the Dáil. I am not being facetious when I say that the first time I really became aware of the continuing fallout of the hepatitis C scandal was when I participated in the filming of the television programme, "No Tears", in 2001. On 11 September 2001, the day on which two airplanes crashed into the World Trade Centre in New York, I played the role of a backbencher in a scene set in the Dáil. I subsequently watched the programme and became more aware of the issues.

The programme possibly overdramatised the issue in terms of the individuals portrayed in it. However, if one looks at the effect of the affair on countless families since the mid-1970s and the fact that the matter has not been resolved, it is clear there are issues to be addressed. My colleague, Deputy Gormley, asked a question which the Minister was unable to answer as she was not in the House. He spoke about Ministers who had the courage to stand up to departmental officials and how a good and courageous Minister would stand up to these officials and recognise that the wording of this Bill is deeply unjust. I hope the Minister amends this legislation on Committee or remaining Stages to take account of the views expressed, although such a course of action may not make certain officials within her Department happy.

I cannot speak for too long because of my very limited knowledge of the background to this legislation. However, having looked through the legislation, I believe it is premature to bring forward measures that exclude certain groups when they were not properly consulted with. I welcome the Minister of State's confirmation that anyone who applied for compensation before 20 June 2006 will not be affected. This assurance offers some small comfort to people. The Bill amends the 1997 Act and will, as others have noted, limit the categories of people who can apply for compensation.

We need more time to debate this issue and if this means postponing this legislation until the autumn to allow groups like Positive Action, the Irish Kidney Association and Transfusion Positive to consult with the Department, so be it. It is not beyond the realms of possibility that if the Minister proposed to remove the guillotine on this legislation and postpone it until the autumn, some measures could be implemented which would seek to serve these groups and their concerns. There has been broad support throughout this House for the general provisions in the Bill relating to insurance. However, this is not a stand-alone Bill which simply helps those who cannot access insurance. It is now a Bill which excludes certain people represented by organisations which were informed of a decision without having the chance to have a proper input into this decision.

It reminds me of the situations pertaining to nursing homes and survivors of abuse in institutions, where the Government for penny-pinching rather than compassionate reasons rushes through legislation. I ask the Minister to think very carefully about this issue. Hopefully, the Government will introduce amendments to this Bill which will remedy some of its negative aspects. I look forward to such amendments.

3:00 pm

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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I thank everyone who contributed to the debate on this Bill, which generated a considerable and understandable degree of interest among Deputies on all sides of the House. I do not propose to deal with the insurance elements of the Bill because I believe there is broad support for them, except to reiterate that I intend to introduce the regulations and appoint the administrator within a three to six-month timeframe. Hopefully, the timeframe will be closer to three months, which is that requested by groups representing those affected. I understand the administrator will take between three and six months to administer both the life assurance and mortgage protection scheme and will, shortly afterwards, do what is necessary to introduce the travel insurance scheme.

Another commitment I gave yesterday was that those individuals who received awards of compensation from the tribunal but who did not qualify for the health card because of the test introduced in 1998 will now receive the health card and that resources will be made available to the Health Service Executive to bring that about. Positive Action has informed me about the number of people affected.

I will deal with the main issues of difficulty that have arisen between me and others in this House. I reiterate what I said yesterday and on many previous occasions. What happened to the victims as a result of the administration of contaminated blood and blood products in this State in the 1970s and 1990s was catastrophic and no amount of money can ever compensate for this. When I became Minister for Health and Children, I set out to inspire confidence in the new blood transfusion service and I believe we can now have full confidence in it. In order to show my respect for the people affected, when this issue first arose, I appointed an individual closely connected with Positive Action to the board of the blood transfusion service when the first vacancy became available on it.

I will deal firstly with the issue of consortium. The loss of consortium is the loss of something that happened. Therefore, the person affected is entitled to compensation. If a person had a relationship with an infected person, either in the form of a marriage or another stable relationship, prior to diagnosis, there is no question that he or she is entitled to compensation for, among other things, loss of consortium. Groups representing affected people will confirm that we do not put people through stringent tests to prove the existence of relationships. We do not query people about their relationships.

The change I am making relates to where it was known before the beginning of the relationship that the person was infected, a scenario which arises in the case of a second relationship following the payment of compensation to a former partner or spouse. In such cases, compensation for loss of consortium does not arise. I listened to some of the debate even though I was not present for all of it so I understand that some Deputies appear to think that we will be taking compensation from the victims. I am bringing forward an amendment to make it clear that this will not happen. Clearly, someone who has a relationship with an infected person, even if it begins after diagnosis, is entitled to compensation for any out-of-pocket expenses, time off work, mental distress or loss of society. However, he or she is not entitled to compensation for something of which he or she was aware when the relationship began. Most people would regard this as fair and reasonable. There are a number of claims before the tribunal and, clearly, nothing I am doing here will affect anything that predated the publication of this Bill. There are a number of claims in respect of second relationships.

On the test, if I believed any victim would suffer as a result of these amendments, they would not have been introduced. Why have we done so? Last year, the KL case was before the courts and KL was compensated. Compensation for fatigue and depression had been refused to KL by the tribunal. The tribunal must now follow the court's decision, which means that anyone who received blood products and who suffers from fatigue and depression is entitled to claim compensation. Therefore, we must instil certainty in this issue.

The controversy that has arisen is surprising. In 1998, Irish experts and a representative of Positive Action agreed that ELISA should be the test for the health card. In 1996, the ELISA test was central to the Bill submitted by Mr. John Rogers SC and Ivor Fitzpatrick & Company Solicitors on behalf of the victims. I cannot establish the reason the test was not accepted. Perhaps the test was not as developed then as it is now. Since that time, the test has been taken on board by schemes in the United Kingdom and Canada. We are making amendments to allow for ELISA, REBA and PCR tests. We are also making provision for any test that arises in future. Anyone who is clinically diagnosed with jaundice, for example, within the 16 weeks or tests positive under any of these tests qualifies. This is fair and reasonable.

Another case will shortly appear before the courts and other cases are before the tribunal. We cannot contemplate a situation where, by virtue of fatigue and depression, which can be caused by many factors, compensation in the order of €250,000 would be paid. No reasonable or fair-minded person could accept that. Therefore, we are trying to instil consistency between the insurance, health card and compensation schemes.

If the test was voluntarily agreed to in 1998 for the health card, I do not understand why the issue arises in respect of compensation. If it was acceptable to get the health benefits, why is it unacceptable to get compensation? There is a genuine misunderstanding on the part of the group identified at the time of the Finlay report that something will be taken away. Nothing will be taken from anyone. Those cases have been dealt with by the tribunal or are before it and are unaffected by these provisions. In terms of diagnosis, only future claims for fatigue and depression dealt with by legal firms will be affected.

Anyone in my position and aware of the facts with which I am familiar would do as I have done. We cannot expose the State to a situation wherein 15,000 or more people who received blood products would be entitled to compensation based on those criteria. The Government's decision in this regard was made after careful consideration. While the members of the group in question can never be fully compensated, we are trying to help them by putting in place reasonable compensation, provision of health services and support towards insurance. In all circumstances, this is reasonable.

Nothing will be taken from anyone and nothing different will occur in respect of the people already involved in the process. There are varying figures of 40, 70 or 100 for the number of cases that emerged nine years ago, but we will say there are 100. If none of that number has begun the process of claiming compensation from the tribunal, why not? The gold standard used by the tribunal was the positive test or jaundice, but the tribunal is obliged to take on board the decision of the High Court. Another case will shortly be before the court.

Why did the Government not discuss the Bill with the groups? That is a fair question. If we are exposing the State to litigation, no Minister or Government in a deliberative process could enter into negotiations on such an issue. I do not want to compare this situation with another, but this House has often dealt with legal issues in a similar way for an obvious reason, namely, the State's exposure. We are not discussing €200,000 or €500,000. Extending the health card will cost €4 million or €5 million, but I do not take issue with that. While I do not lightly disregard money, I want to help those who genuinely need help. As such, the cost of helping them is not the issue. Rather, the issue is one of exposing the State to a large number of potential claims. We do not need to be experts to know the capacity in some quarters for seeking compensation.

This Bill does not victimise innocent people who suffered. It is concerned with protecting a scheme on behalf of those for whom it was designed and ensuring that they get the health services, compensation and insurance to which they are entitled. It is also concerned with not exposing the State beyond that. People ask why the word of a doctor should not be accepted, but doctors can be wrong. Putting ourselves in the position of accepting something by virtue of the fact that a doctor said it would not be reasonable or fair. Not even Deputy Twomey would agree that such a provision would be reasonable or fair.

One can receive compensation and the other benefits on clinical or laboratory evidence. It is not a matter of jumping through several hoops, as someone suggested. Given what we know of the scientific nature of the test, its international acceptance, that it is central in the schemes of other countries, was advocated here in 1996 and was universally accepted here for the health card in 1998, I do not understand this reaction. There must be some misunderstanding about its impact. I assure the House that the provision is being included for purposes of consistency and ensuring that the State is not exposed to claims for compensation from people who received blood products and who are now suffering from fatigue or depression, or both, which can be caused by many factors. I will not give figures in that regard and I am not suggesting that all 15,000 would claim, but we would be left exposed by the High Court case if we did not provide certainty in respect of the principles applied in the three schemes. I commend the Bill to the House.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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I have proposed the motion——

Photo of Joe CostelloJoe Costello (Dublin Central, Labour)
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I am about to put the amendment.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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——that Dáil Éireann declines to give a Second Reading to the Bill.

Question put: "That the words proposed to be deleted stand part of the main Question."

The Dail Divided:

For the motion: 58 (Noel Ahern, Barry Andrews, Niall Blaney, Martin Brady, Séamus Brennan, John Browne, Joe Callanan, Ivor Callely, Pat Carey, Brian Cowen, John Curran, Síle de Valera, John Dennehy, Jimmy Devins, Frank Fahey, Michael Finneran, Dermot Fitzpatrick, Seán Fleming, Mildred Fox, Jim Glennon, Noel Grealish, Mary Harney, Seán Haughey, Máire Hoctor, Joe Jacob, Cecilia Keaveney, Billy Kelleher, Peter Kelly, Tony Killeen, Séamus Kirk, Tom Kitt, Brian Lenihan Jnr, Conor Lenihan, Tom McEllistrim, John McGuinness, John Moloney, Donal Moynihan, Michael Mulcahy, Seán Ó Fearghaíl, Charlie O'Connor, Willie O'Dea, Liz O'Donnell, Noel O'Flynn, Batt O'Keeffe, Ned O'Keeffe, Fiona O'Malley, Tim O'Malley, Tom Parlon, Peter Power, Dick Roche, Mae Sexton, Brendan Smith, Michael Smith, Noel Treacy, Dan Wallace, Joe Walsh, Ollie Wilkinson, Michael Woods)

Against the motion: 38 (Dan Boyle, James Breen, Tommy Broughan, Joan Burton, Paul Connaughton, Joe Costello, Bernard Durkan, Damien English, Eamon Gilmore, Paul Gogarty, John Gormley, Tony Gregory, Marian Harkin, Tom Hayes, Joe Higgins, Michael D Higgins, Paul Kehoe, Kathleen Lynch, Shane McEntee, Finian McGrath, Paul McGrath, Paddy McHugh, Liz McManus, Gay Mitchell, Olivia Mitchell, Catherine Murphy, Caoimhghín Ó Caoláin, Fergus O'Dowd, Brian O'Shea, Willie Penrose, Michael Ring, Eamon Ryan, Seán Ryan, Róisín Shortall, Emmet Stagg, David Stanton, Billy Timmins, Liam Twomey)

Tellers: Tá, Deputies Kitt and Kelleher; Níl, Deputies Stagg and Kehoe.

Question declared carried.

Amendment declared lost.

Séamus Pattison (Carlow-Kilkenny, Labour)
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The Bill is declared to be read a Second Time in accordance with Standing Order 119(2)(i).