Jerry Cowley (Mayo, Independent)

I am pleased to speak on the Bill, which shows what has been the position of several Governments on this critical issue affecting people's health. It is symptomatic of much that has occurred and tells a sad and sorry story. In the early 1990s the Irish Blood Transfusion Service, as it was then known, diagnosed a number of people with hepatitis C but did not inform them immediately, which put the individuals in question and their families at great risk. In some cases, people were not told for years that they were infected. This issue was the subject of four legal cases, one of which is before the High Court. Its legacy includes the deaths of at least 88 haemophiliacs who contracted HIV from contaminated blood products and the infection of more than 1,000 people with hepatitis C from infected batches of anti-D.

The deaths of 88 haemophiliacs is terrible and regrettable. We learnt today that, since Christmas, eight people infected by the State with hepatitis C or HIV have died and that these individuals, two of whom were women aged 48 and 49 years, respectively, had no life insurance at the time of their deaths. Either they could not obtain life insurance or were quoted premiums that were so high as to be out of their grasp. No company wanted to provide them with life insurance cover because they were considered too high a risk on the grounds of a disability, namely, hepatitis C or HIV. Instead of the State protecting their constitutional rights to bodily integrity, as it is obliged to do under the Constitution, the agents of the State killed them by giving them infected blood product which caused the predicament in which they found themselves. I welcome the provisions in this Bill rectifying the life insurance position. It is the least the State should do. The only pity is that it has taken so long, nine years, which is scandalous. As a medical student in 1991 I went to the United States on a J1 visa to try to earn some extra money. I remember seeing advertisements on the streets of New York seeking blood donations in exchange for dollars. Everybody knew that drug addicts donated blood regularly as a revenue earner to feed their drug habit. It was, therefore, no surprise that HIV and hepatitis C turned up in donated blood. I am glad compensation has been paid to some of the victims. The Irish Government has paid €660 million in legal fees and compensation so far to some 2,000 victims of the contaminated blood scandal. Although that is a lot of money, it is only money and cannot give those people back what has been taken from them. It has wrecked people's lives and health and taken loved ones away from their families, mothers, fathers, sons, daughters, aunts, uncles, grandmothers and grandfathers.

It is terrible that so much money had to be paid because of negligence and the failure of the State to do what it should have done. It is remarkable how so much harm was done by people not doing what they were supposed to do. I worked in Mayo General Hospital as an obstetric house doctor around the time the infected batches came out. One of my tasks as a junior hospital doctor in obstetrics and gynaecology was to inject rhesus negative women after the births of their children with the anti-D blood product to kill any cells of the baby's blood that might have crossed from the afterbirth to the mother, and which could sensitise her to the baby's blood and make antibodies which could affect future pregnancies. This injection has eliminated a serious condition. However, when one has such an injection one expects it to be safe and when it turns out that some were lethal injections with such a terrible cost to people's lives, one must question what happened and how it was allowed.

Little did we realise that certain batches of this blood produce were infected and that the agents of the State were aware of the international concerns for some time but did not take the proper steps to ensure infected products did not get into this country. Unfortunately infected products did in and it is a matter of public record through the Lindsay inquiry that a catalogue of failures, neglect and inadequacies was perpetrated by the then Irish Blood Transfusion Service Board. Unfortunately most of the victims are women who were infected with hepatitis C when they received the infected blood products in this way. Approximately 1,000 of the victims were recipients of anti-D blood products and 700, mainly renal patients and haemophiliacs, received blood transfusions or blood clotting factors. It is terrible how this happened and how the victims, their families and the taxpayer must live with the consequences of somebody else's mistake. It is unacceptable that this Bill contains changes of which the advocacy groups concerned were not aware until Tuesday of last week.

I laud the work of Transfusion Positive, Positive Action, the Irish Haemophilia Society and the Irish Kidney Association on behalf of victims and their families. When I met haemophiliacs in my professional career as a GP I was always affected by the fact that people were born with this affliction and that if they fell, instead of receiving just a bruise, they could suffer bleeding into their joints because they lacked a basic clotting factor. When this happened it was a terrible situation and that bleeding had to be stopped with an injection. Those young children were always very brave. To think that some of them received a lethal product which would lead to their deaths affected me. If it affected me, what must it have done to their families to lose a child in that way? For haemophiliacs to be affected like this was unforgivable.

The main change causing problems includes an amendment to the Hepatitis C Compensation Tribunal Act, which requires all new applicants to the tribunal to undergo stringent scientific tests to prove their condition instead of relying on the word of a specialist hepatitis C doctor. I note the Tánaiste's addition of the other tests, which is important. This area is not as cut and dried as people might think. It is still a grey and evolving area and epidemiological information is still coming to light about the value of these tests. A medical colleague informed me that he was surprised when a patient of his tested positive for hepatitis C, but two subsequent tests proved negative. This raises the argument that if one can get a false positive test, one can get a false negative test. Most infected people remain infected until treated. Some have lost the virus from their systems but they will still retain antibodies. There are exceptional circumstances where somebody who has contracted hepatitis C can have a negative antibody or ELISA test result. For example, in a health worker who contracted the hepatitis C virus from a needle stick injury one could monitor the liver function test data beginning to rise as evidence of infection. By intervening early with the antiviral drug, Interferon, in theory at least, it is possible that the immune process could be prevented so that no antibodies are produced, resulting in a negative test, even though hepatitis C has been contracted. In other words, somebody could be infected with hepatitis C but form no antibodies. Therefore the tests are uncertain and if there is doubt the benefit of the doubt should be given to the afflicted person.

There is a human face to this. I have a constituent who is badly afflicted with hepatitis C and even though her consultant hepatologist is prepared to swear or give evidence that this person has hepatitis C, based on repeated clinical examinations, this is not acceptable. It should be acceptable and I have called for it to be acceptable on a number of occasions in this Chamber. Although the person to whom I refer is desperately ill, she cannot even get a medical card. This is a disgrace because she and her family are going through hell on earth. This lady has a young family and is in great need. She is in and out of hospital with various afflictions, all related to her hepatitis. She is constantly in need of the services of her GP and consultant hepatologist and she must bear these crippling costs. She and her family have enough to worry about trying to keep her well and dealing with the fact that she is ill and unable to do the things any mother should be able to do with her children, to take part in their play and be with them as they grow up. This lady is in a poor state and should not have to worry about the terrible financial hardship she is undergoing.

This situation must be resolved. Humanity cries out for people like this to be given the support they need. I have pleaded with the Tánaiste to reconsider her stance on providing free health care for this poor lady and the estimated 100 women who are severely affected by hepatitis C and who have not tested positive, as this lady has not, but have every other manifestation of the illness. This is a small number of women so affected, but their need is great. The Tánaiste has informed me that while she is sympathetic to the women, she cannot support an extension to the current eligibility requirements. Why not? It has been said the Tánaiste is a very definite person. She does not do the nuances very well, however. I do not know whether this is correct but this is a definite situation and it is critical to look after these ill women, including my desperately ill constituent.

Haemophiliacs have got a raw deal. What has happened to them is unparalleled in any group and whatever can be done to help and support them should be done. It is very unfair to be born with such an illness but no words can describe what has happened to these haemophiliacs and their families. It is a gross injustice.

The State does not face up to situations it should face but tries to fight cases, such as that of Mrs. McCole, which cry out for justice that is not done. Instead, there is an attempt to deny, or worse, to fight someone who seeks justice and has a right to be treated fairly and with equity. This applies also in respect of autism. The money used to defend the indefensible should be spent on services.

I calculated from replies I received from the Department of Health and Children that approximately €8 million of taxpayers' money was spent on fighting the parents of children with autism who were trying to get health services for their children. I asked a similar question of the Department of Education and Science and found that approximately €12 million has been spent on fighting parents who were trying to secure special education for their children with special needs. Parents will do anything to ensure that their children receive the equivalent of a normal education, or as near to that as possible. Instead of spending that money on providing services for those people with special needs or children with autism, the Government spent it on trying to deny those children the right to the health and educational services they need and deserve. That amounts to €20 million, which is a large sum.

The Hepatitis C Compensation Tribunal (Amendment) Bill 2006 represents people infected with hepatitis C through infected blood and blood products administered by the State. The problems relate to sections 1, 2 and 6. In the past all groups were consulted prior to the publication of an amendment Bill but in this case it was sprung on them on 20 June for debate today, with the result that there is no accountability to the groups involved or the infected people they represent.

The groups feel that the new exclusion of consortium for partners of sufferers is underhand. In 2002 the then Minister for Health and Children introduced an entitlement for the spouses and partners of people with hepatitis C to claim for compensation for the loss of consortium. This morning the Minister, Deputy Harney, said that these changes do not discriminate against children, but the groups argue strongly against this. Today's children, tomorrow's adults, will have no safety net for their future partners.

Hepatitis C is a debilitating disease which can be more or less dormant for many years but a bout or flare-up of the symptoms can leave a person bedridden. Such a person, infected by the State, or his or her partner, should receive compensation. Similarly, it is wrong that those who do not test positive but have all the manifestations of hepatitis C, which the consultant hepatologist is prepared to state, can be denied the compensation they deserve and require.

The groups feel that this exclusion concerns money, not accountability. It was decided behind closed doors. There was no dialogue or debate with the people affected and the groups feel insulted that the Government is saying sorry but not showing regret. They maintain that the Minister has been in consultation with the relevant insurance groups and is following advice. She is aware that many people remain to be diagnosed and the floodgates have not yet opened. They say, "Infected by the State; the future will now not be the same as the past."

The ELISA test is the current hepatitis C determining test. A woman who last Monday tested negative on the ELISA test but has all the symptoms, and written confirmation from the then Irish Blood Transfusion Board that she received infected blood, is not entitled to compensation. The 100 women who have all the symptoms of hepatitis C but not a positive ELISA test will not be considered under this new legislation.

The Minister wants all testing based on the results of the ELISA test. A positive result will be the only form of recognition of the disease, as well as the RNA test which she has added, and other tests. To get this through quickly the Minister has verbally confirmed that those already in the system testing negative but with all symptoms will be compensated. I hope that the Minister will do as much as she can to try to include those 100 women who are not being compensated. They cannot even get medical cards.

In a reply to a parliamentary question on 7 March 2006 the Minister said that in September 2005 she told the groups representing those infected that they had her full support. Where is that support now? In January 2002 the Irish Blood Transfusion Board stated on paper that 64,500 women tested negative for hepatitis C but that 19,000 may have received potentially infected product.

The Government should consider seriously the deficits in this Bill and address the changes regarding diagnosis and consortium. I welcome the changes regarding insurance but nine years later they are not before time.

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