Liam Twomey (Wexford, Fine Gael)

Much of what will be said by Members of this House today and tomorrow will be on behalf of members of the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive because the Tánaiste and Minister for Health and Children did not negotiate fully with those organisations before this legislation was brought through. In some respects we represent their views and those of people affected or who may be affected by State health services.

The Tánaiste and Minister for Health and Children's statement to the press yesterday mentioned that she is anxious to have this Bill enacted so that the many people deprived access to the insurance market can now avail of it. If she had stuck to the issue of insurance products, this legislation would have received the full support of this House and would be passed quickly today without the animosity we have witnessed.

Patients were infected with HIV and hepatitis C by the State's health service and the Tánaiste and her Government should not lose sight of that pertinent fact. We are obliged to do our absolute best for these people because of it. Groups representing the victims of this public health disaster were quietly confident that, after months of negotiations with the Tánaiste and Minister for Health and Children and her Department, this Bill would finally help them come closer to closure on their dealings with the State on this terrible disaster. I acknowledge that these dealings were often more confrontational than they should have been in the spirit of correcting the wrongs done to this group of people by the State that we serve.

This has been a medical, social and psychological disaster in the lives of those men, women and children involved — citizens of this country. We can all remember the raw emotion in the mid-1990s when this public health disaster first came to light and it continues to have a terrible effect on people's lives to this day. The way this legislation has been put through the House by the Tánaiste and the Government is wrong. In the past ten years the State has responded to this issue with two Acts, the Hepatitis C Compensation Tribunal Act 1997 and the Hepatitis C Compensation Tribunal (Amendment) Act 2002. They looked at two of the three strands referred to by the Tánaiste and Minister for Health and Children, namely, giving compensation to people affected and providing health care to them. The third strand was the provision of insurance. After months of discussion, those affected believed this Bill would build on protections achieved so far. We should acknowledge that those achievements were initially difficult to gain, but as time passed we recognised what needed to be done.

Having spoken to the people affected by this, it is amazing how they were treated all those years ago, not only politically but also by the medical profession. Assumptions were made as to how they might have contracted this awful illness. Assumptions were made regarding their private lives which, undoubtedly, had an effect at the time. We need to be much more humane in the approach we take to the issue. Let us not revert to those days. Let us be more proactive and try to help these people. It is important that we deal with this as an insurance issue. The way the Tánaiste and Minister for Health and Children has dealt with this issue so far has been a slap in the face for victims. In some respects, the Government has been deceitful in the way this legislation has been advanced so far. It was only supposed to relate to the issue of insurance and the Tánaiste and Minister for Health and Children's changes have been brought forward in a deceitful way.

All the organisations that represent the victims of this terrible tragedy are unanimous in their objections to sections 1, 2 and 6. I do not like the way the Tánaiste and the Government launched a pre-emptive strike against the victims. The Government's press release states: "the Expert Group on Hepatitis C which is chaired by the Department's Chief Medical Officer and includes representation from leading liver consultants and a member of Positive Action, agreed in 1998 that eligibility for the Health Amendment Act Card should be on the basis of a positive diagnostic test for Hepatitis C". That statement is an attempt to downgrade the victim's argument by saying they agreed with the Department on the ELISA test for Hepatitis C. The Government should have been far more honest in its negotiations with this group of victims.

The way the issue of compensation is dealt with in the press release is sinister. Reference is made to "... compensation, through the Hepatitis C and HIV Compensation Tribunal, which to date has awarded over €660 million to around 2,000 people". The assumption that any reader of that statement would make is that €660 million has been given to 2,000 patients who have been infected by hepatitis C or HIV. The sum of €660 million covers everything, including legal, administrative and organisational costs, as well as compensation to the victims. The Government should have made that very clear instead of trying to give the impression that this group of people have already been well compensated by the State and that what the Government is doing today is redressing an imbalance on behalf of the State. That is an extremely negative approach and the Government should not attempt to do anything similar in future, especially in the context of dealing with victims of a terrible tragedy. The Tánaiste and Minister for Health and Children needs to clarify that point immediately.

The victims and their representative organisations have behaved admirably with the Tánaiste and Minister for Health and Children and all Governments over the past nine years. They have entered the negotiation process to try to build on their entitlements, the compensation fund for people who may come after them, the health care services they, and others who cannot speak for themselves, will need and insurance provisions. They have been extremely good in the way they have dealt with the Department of Health and Children and the Government. They have been involved in the negotiations on this legislation for 18 months. They attended numerous meetings and had countless discussions. They set targets that are referred to throughout the Bill and with which no one in this House will disagree. The Tánaiste and Minister for Health and Children will have no problems in that regard because the negotiations were two-way.

However, when the victims read the Green Paper they were shocked and horrified by sections 1, 2 and 6. That is why they approached the Opposition and asked us to request that those sections be withdrawn. They were not negotiated on with anybody and were purely unilateral, coming from the Government side. Those sections represent a Government decision to restrict some of the entitlements of these patients.

Withdrawal of entitlements is heavily dependent on medical evidence. Two laboratory tests will decide whether the State will look after infected patients or deny them service. The Government is setting enormous store by the ELISA test, arguing that it is extremely accurate and has improved greatly in recent years. The ELISA test, an Enzyme Linked Immuno Sorbent Assay, is a test for antibodies and not for the virus itself. Is this the only test proposed or are there other immunoelectrophoresic procedures being planned also? Is it intended to use other assay type tests that work like the ELISA test? Has the Government any plans to measure the viral antigen? Has any advice been given to the Tánaiste and Minister for Health and Children on this issue? There is no mention of alternatives in the legislation. The Bill clearly refers to one test, which is a test for the antibodies to hepatitis C, upon which a claim will fall if the result is negative. There is no indication as to whether it is intended to measure viral load or viral antigens.

I ask the Tánaiste and Minister for Health and Children to verify that the ELISA test is the only one that the Government will rely upon. I further ask how many ELISA tests will be allowed. Is one positive test at some stage in one's life sufficient? If patients get a negative result at some stage, will things get a little tricky in terms of their entitlements? The situation is not clear but the Government has put enormous store by a single test.

One thing I have learned from my 20 years in medicine is that it is not an exact science, although we might like to think it is. Medical discourse concerning laboratory tests is littered with terms such as "false positive", "false negative" and so forth. The Tánaiste and Minister for Health and Children knows this. In that context, people can be denied services and justice on the basis of blood tests that may not be 100% accurate. Many factors can affect the results of a blood test, including chemotherapy treatment or transplants. This fact is not covered anywhere in the legislation. The Government is giving all the credit to one test and one wonders if one had a discussion with medical experts whether they would agree that this is the right approach to take. In the interests of fairness, the Tánaiste and Minister for Health and Children should release the expert advice she received, when drawing up this legislation, to show that this test is so accurate that justice can be denied to people on the basis of it. What has gone wrong in the past nine years that the Government is now taking this approach?

The Government is also relying on another test, the approach to which is even more ridiculous than to the ELISA test. The Alanine Aminotransferase Test looks at raised ALT levels in the presence of jaundice, no later than 16 weeks after the person has received anti-D. This may seem reasonable in a medical sense, but is not so in a real-world sense. Anti-D is given to women after delivery. Will the Department recall those women at 16 weeks and check their ALT levels, in the presence or absence of jaundice? Medical advisers will point out that it is quite possible, after 16 weeks, that there would be no visible signs of jaundice in patients that would lead them to seek medical attention. Statistics indicate that fewer than 20% of patients might have jaundice when they have this acute infection. Therefore, reference to raised ALT levels is meaningless because the only way a patient will know if his or her ALT levels are raised is in the presence of jaundice. Many patients with a 16 week old child would not be surprised to find they are tired, lethargic and sleeping a lot. The Government is relying on one thing, namely, jaundice. It is saying to patients that they must have jaundice after 16 weeks or they are out of the loop. The Government cannot do that to patients.

If the Government is saying that anti-D is still a problem, however small, everybody who receives it should be tested, 16 weeks later, for raised ALT levels. Perhaps people should also be tested after six months and again after 12 months, to be absolutely certain the Government is not denying people their rights or missing something. There are two ways to approach this. The Government is asserting in the legislation that if a person is one of the fortunate four out of five patients who does not contract jaundice, he or she is out of the loop. At the same time, if a person contracts jaundice, he or she should seek medical attention immediately or will receive nothing from the State. That is what the commencement order in the Bill means.

The issue of transfusions is also important. People who receive blood transfusions often get jaundice because red blood cells may break down in their bodies for many reasons. One can see this when one conducts routine blood tests on transfusion patients. Often people who receive transfusions have other illnesses which cause them to be anaemic. Some blood tests may indicate raised ALT levels but doctors might not always consider the possibility of hepatitis infection and carry out further tests for hepatitis C.

Again, the Government is denying those patients the opportunity to secure the compensation that the State must pay people if its health services have been negligent. The compensation, medical care and insurance schemes that we are giving them are only to be expected. There is nothing great in this, and we must be far more open and easy with people regarding those issues.

Recently we had a hepatitis B scare in two hospitals in the south east. When the laboratory there was looking through the different types of hepatitis B that it had, it noticed that there was a cluster in two hospitals. It started a massive campaign, which is still under way, to test another 1,000 patients who were in the hospital at the same time to see if there are other cases of hepatitis in that population.

From my medical experience and discussions with doctors in both hospitals, I cannot see how those patients might have contracted hepatitis from each other. They did not have a surgical or investigative procedure carried out, which are the most obvious possible sources of infection in hospitals. Public health investigators could not find any connection between the individuals at a community level. A large-scale public health exercise is being carried out to take blood from 1,000 patients who may only have been in the same ward as the others and had no physical or verbal contact with them. However, the testing is happening because we do not know how the hepatitis cluster arose.

The Minister for Health and Children has introduced legislation and is incredibly positive regarding health outcomes. If it is black and white as far as she is concerned and she can deny a service to future patients on that basis, she should present her evidence to the Select Committee on Health and Children on Committee Stage and state why she came down so strongly in this regard. I am focusing a great deal on medical issues, but I am sure other Members will raise alternative points regarding the legislation. These are important, since the Minister for Health and Children is basing so much on them. She must come back and inform us what is going on.

I would also like to know what concerns were raised within the Department that criteria used for nine years were unacceptable. What has changed that has resulted in such concerns being raised? This morning we heard that, if there are patients of whom we are unaware, their number is approximately 100. I do not know why the Minister for Health and Children is making such major changes to legislation. Whom is she attempting to block out? Has the Department identified a cohort of people abusing this? Why is it marking people in this manner? If something has worked so well for nine years, why are we taking this route? Nothing in the Minister for Health and Children's press statement yesterday or any other statement that she has made thus far gives any indication of why she is taking this course of action.

If anything, this debacle was handled extremely well after enactment of the initial legislation. People have become more aware of what went wrong, and we have seen great changes to the Irish Blood Transfusion Service. Everyone has invested a great deal of time and effort in this, and I would like the Minister for Health and Children to tell us what she feels is so wrong that she must introduce what in some respects is extremely restrictive legislation, allowing no element of doubt regarding those who might be affected. Everything is black and white for the Minister, and I would like to know where she is coming from in this regard. She spoke of having received expert medical advice, and that is vital to every Member when she is coming down so hard on people regarding the shape the legislation is taking.

Why did she spring this legislation on organisations that have co-operated so fully with the Department of Health and Children in recent years? They have put their anger to one side and done their utmost to secure the best compensation, medical care and now insurance protection. That protection is for themselves and their families. I am surprised that it has taken so long and that they have been so patient when awaiting this legislation.

There is no doubt that there have been adverse events for some of the victims, who were first diagnosed as far back as 1995 or 1997. In the meantime, they might well have benefitted if the third strand of this legislation had been delivered within the last nine years of the current Government. It was an unbelievably topical issue and very emotional for everyone involved rather than simply for the victims, who were directly and adversely affected. Many people shared their pain regarding what happened at that time. I am surprised it has taken so long for us to reach this point.

Regarding the consortium, the Minister tried to throw this in. Someone once said of her party colleague, the Minister for Justice, Equality and Law Reform, Deputy McDowell, that he likes to build up straw men so that he can pull them down, throwing irrelevant things into an argument and then trying to argue against what he has essentially created himself.

The Minister for Health and Children mentioned the issue regarding second and third partners as the reason for bringing forward the more restrictive legislation on section 2. Minors affected by hepatitis C and HIV, who are now reaching an age when they will form stable relationships, may already have become part of the system, but they may not be able, old or mature enough or have such a relationship.

If they have a first relationship after that date, the Minister will now deny any compensation to their partners. They were infected as minors but will suffer from hepatitis C and any other ailments later in life. They will also suffer emotionally and psychologically, since they will not be able to form the same sorts of physical relationships that all of us in this House are lucky enough to enjoy. This legislation, and especially the fact the Minister is attaching a limit, will restrict those people. This morning she threw in a red herring, and she should revise that part of the legislation.

Those are the big issues. In my speech today, I have focused on sections 1, 2 and 6. I have not raised insurance since, as I pointed out, the organisations involved negotiated a deal in a cool and collected manner and a spirit of partnership. That spirit and trust has now been broken by the Minister, and she and especially the Government must attempt to rebuild it rather than taking us back to the bad old days. This is her opportunity to do so. I am delighted Deputy McManus has put forward an opportunity for her and the 16 apostles on the Government backbenches who will now dictate Fianna Fáil policy to bare their teeth and stop this nonsense from going any further.

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