I move:
That Seanad Éireann calls on the Minister for Health to recognise the special problems of the haemophiliacs infected with AIDS and HIV positive through transfusions of contaminated blood, and to set up a trust fund to help meet the basic needs of themselves and their families.
Haemophiliacs have a hereditary blood disorder which affects over 300 people in this country. It is potentially life threatening in as much as haemophiliacs do not have sufficient amounts of the clotting agents, Factor 8 or Factor 9, in their blood. Without treatment heamophilia results in extremely severe and painful arthritis and subsequent crippling or in premature death. Control of the disorder can only be achieved using blood product therapy.
Haemophiliacs are totally reliant on transfusions of Factor 8 or Factor 9 made from human plasma. It is through these products that the human immunodeficiency virus, HIV, the virus which causes AIDS, infects people with haemophilia. Factor 8 and Factor 9 are completely absent in people with severe haemophilia. In this condition spontaneous bleeds can occur at any time of the day or night without warning. On average a person with severe haemophilia bleeds 35 times each year, but the range is wide. Children and young people often experience bleeding which requires daily treatment.
Before the advent of home therapy in 1973, people had to attend hospital for their treatment and were confined to bed for many weeks. The development of Factor 8 and Factor 9 concentrates meant that patients could be given their treatment at home or at their place of work by a simple injection. Until the emergence of AIDS the treatment of haemophilia had been heralded as a major success story. Home therapy allowed people with haemophilia to compete with the rest of society and to lead normal, happy, productive lives. It takes up to 20,000 donations of human plasma to produce each batch of clotting factor concentrates. A viral infection of only one donor can contaminate the entire product.
Of the 300 haemophiliacs in Ireland 106 have been exposed to the HIV virus, 15 have developed full-blown AIDS and six have died. Regrettably, medical evidence suggests that there are a large number of those who are HIV anti-body positive who will go on to develop AIDS. People with haemophilia who have been exposed to HIV infection are a finite number. They were infected while taking treatment which was intended to keep them healthy. Their HIV anti-body positive status is a result of the medical treatment received through the health services.
Blood products are manufactured from two sources: (a), commercially obtained clotting factor concentrates drawn from blood from paid donors abroad and bought and distributed to the health service, and (b) domestically obtained Factor 8 or Factor 9 clotting factor concentrates from voluntary donations through the Blood Transfusion Service Board. Since 1985 all Factor 8 and Factor 9 have been treated to prevent infection and all individual donors have been tested. Commercially obtained concentrates from the plasma of paid donors were first suspected of carrying the HIV positive virus in 1982. Despite this, concentrates produced from Irish volunteer donors were not available until 1986 and by March 1988 we were still not totally self-sufficient; imported concentrates were still being used. We are now almost totally self-sufficient and this is very welcome news.
The implications of HIV infection for the families of people with haemophilia have been devastating. Haemophilia is a potentially life-threatening disorder itself. HIV and AIDS are placing an intolerable pressure on family life. Let me give the House some idea of the way in which this awful problem has directly affected this very small, vulnerable group of people. The nature of the ailment is such that it is a hereditary disease and there can be more than one sufferer in a family unit. Within the number in this country there are families where brothers are haemophiliacs or where a father and son are affected.
Due to the hysteria associated with AIDS and haemophilia many, regardless of their anti-body status, have had to publicly deny their blood disorder and subsequently lead a double life. They feel ostracised and abandoned and unable to fight their own case at present. We are talking about normal, ordinary families living in this country with children going to local schools and wanting to live a normal happy life but, unfortunately, due to a medical problem which they have inherited, through no fault of their own, they are now unable to do so.
There is also the added financial problem to deal with. Because of the infection it is impossible to obtain endowment or life insurance to protect homes and families. Each one of them must suffer the mental distress of knowing that their health is uncertain but they cannot make adequate provision for their family. This must be a horrifying experience, especially for those who have developed full-blown AIDS.
As I said earlier, 300 people with haemophilia are now known to have been infected with the human immunodeficiency virus HIV. Infection with HIV was as a direct result of services provided by the Department of Health. This treatment was administered in order to keep people with haemophilia healthy but it has exposed them to a potentially fatal illness. The implications are proving devastating to both the people involved and their families who have already faced extraordinary difficulties on account of their haemophilia alone. We are now asking the Minister to set up a trust fund of £400,000 annually to help people in this category.
I am aware that the Minister has met with the Irish Haemophilia Association and has turned down their request for financing such a trust fund. He made a generous offer of allocating £50,000 to the society for counselling purposes or for any other need that the society felt might be useful. Of course, this fell far short of what the society required for its members and they had, very reluctantly, to reject the Minister's offer. The only knowledge I have of the Minister's views on this matter are taken from replies he gave to questions in the other House on 9 February. On that occasion, he stated that it was his responsibility to ensure that all AIDS sufferers are properly treated and looked after by the State.
While the House would fully agree with the Minister's statement — and indeed this House, as the Cathaoirleach may remember, had a two-day debate on AIDS, on how it affected society and the problems of society — nevertheless, I feel a special case can be made, and must be made, for those suffering from AIDS or HIV positive through their medical treatment. This treatment was provided to them by the Government and, consequently, the Government have a clear, moral obligation to help these people and to distinguish between them and others.
The issue in relation to haemophiliacs is quite distinct from the general issue of medical or other assistance being given to people with HIV anti-bodies or who have contracted AIDS or indeed other people with fatal illnesses. The Minister in seeking, as he has done to date, to merge the particular question of compensation for haemophiliacs injected with infected plasma with the more general question of AIDS sufferers, is refusing to address the question of the moral responsibility of the State in the specific case of haemophiliacs.
The State has a general responsibility which it exercises with great care in relation to public health, including the control of drugs, operation of the National Blood Transfusion Board, etc. The plasma with which AIDS sufferers were injected in 1985, or possibly before then, was imported in good faith. No one is to blame and no blame is to be attached to those who imported it or injected it, nor indeed could it be fairly alleged that the State was negligent in not ensuring that the plasma was checked in relation to a threat, the existence of which at that time was not fully appreciated. Nevertheless, the fact remains that this group of 106 people were actually injected with plasma that was infected with HIV anti-bodies, as a result of which a significant proportion have, or will inevitably, contract AIDS. The decision to compensate people infected in this way cannot be seen to be creating any kind of general precedent. It has nothing whatsoever to do with the quite different question of helping AIDS sufferers generally or others with fatal illnesses contacted without such direct intervention.
The Minister, therefore, cannot in logic, justice or equity seek to avoid the issue of compensating those who have, without blame to anybody, been injected in this way by trying to suggest that this would create a precedent of any kind. The head of the Government at the time this event occurred, the former Taoiseach, Dr. Garret FitzGerald, put to the Minister that the request is quite simply and specifically to compensate for a wrong inflicted on a small group of persons in unique circumstances, in a manner that involves no question of negligence or legal responsibility by the State, but does engage the moral responsibility of the State.
For a moment I just want to reflect on how other states have responded to the situation we face in Ireland. In Spain where there is a total number of haemophiliacs of 2,700, they have a HIV rate of 80 per cent or 2,200. A Royal Foundation or Commission has been set up and payments of lump sums, pensions, etc., have started. Pharmaceutical companies have accepted the idea of producing a compensatory programme for sufferers. In Denmark they have a 35 per cent level of HIV positive among haemophiliacs. A large sum is paid for full-blown AIDS, HIV infection, infected wives and children, amounting to $38,000 tax free for each person involved. In Norway, with a 26 per cent HIV rate among haemophiliacs, a lump sum of $40,000 is paid for full-blown AIDS and anti-HIV positive haemophiliacs.
In five countries there is legislation already existing to allow for compensation: the Federal Republic of Germany, Sweden, New Zealand, Bulgaria and India. In Germany, on the basis of mediation by the Haemophilia Society payment follows through the drug liability insurance of the pharmaceutical companies as a lump sum for full-blown AIDS, HIV infected haemophiliacs and HIV infected wives and children. The sum at present ranges between 40,000 and 250,000 Deutsche Marks. In Sweden there exists a consortium for insurance of patients, financed by all the pharmaceutical companies in the market. A lump sum is paid for full-blown AIDS, HIV infection and infected wives and children. New Zealand has a national accident compensation scheme. Blood transfusion-related AIDS is accepted as an accident due to malpractice and is, therefore, compensatable. In Bulgaria legal action has been taken against the manufacturer and the law of settlement out of court is in preparation. In India there exists legislation to approach manufacturers. At the moment, however, there is no apparent problem in India; no cases of AIDS exist but if there was the Haemophilia Foundation would assist in taking legal action.
It can be seen from the list of countries I have outlined that there is compensation to be had for haemophiliacs who have become infected with AIDS virus as a result of treatment with infected blood products.
I want to draw the Minister's attention to the following passage of my contribution. The British Government have made a special allocation to the Haemophilia Society. I want to refer to a debate in the House of Commons on 16 November 1987 on haemophiliacs and financial assistance to them. I refer to column 773 and I quote the Minister for Health who stated:
As the House knows, the position under successive Governments has been that while compensation may be sought through the Courts, if there is a question of negligence there is no State scheme of no fault compensation for those damaged by medical treatment.
The same applies here. He continued:
The Haemophilia Society have, however, put to us a very powerful case that the position of haemophiliacs is wholly exceptional and should be treated as such. Their employment prospects and insurance status were already affected by haemophilia itself. The treatment that led to their infection was designed to help them to live as near a normal life as possible. The hereditary nature of haemophilia can, and in some cases does, mean that more than one member of the family can be affected.
The Government, having considered all the circumstances, have concluded that it would be right to recognise the unique position of haemophiliacs infected with the virus. We, therefore, propose to make an ex gratia grant of £10 million to the Haemophilia Society to enable it to establish a special trust fund. It will be able to make payments to the affected individuals and families throughout the United Kingdom and to do so with greater flexibility than would readily be achieved in any other way.
What is extraordinary about that statement is the fact that it would appear that some months prior to making it the Minister of Health in Britain held the same views as our Minister for Health, Deputy O'Hanlon, whom I am glad to see here. I understand his views were changed at an all-party meeting in the House of Commons where backbenchers expressed their view that financial assistance should be given to haemophiliacs who had become infected with the AIDS virus as a result of treatment with infected blood products. I want to quote again from the same report of the House of Commons. The speaker is Mr. Robin Cooke. He stated:
Every Member who attended last month's lobby and who witnessed the courage and restraint of the representatives of the infected haemophiliacs will welcome the statement that the Government have a duty to help affected haemophiliacs because they are infected by the health service to which they had come for treatment. The Minister's conversion is all the more welcome because it reverses the position which he had been maintaining only six months ago.
I want the Minister for Health to reflect on these statements because I think they mirror his own situation. I am firmly of the belief, as one who bears a handicap, that haemophiliacs by their very nature are disadvantaged people. Their treatment is treatment out of necessity because, as Members of the House will know, if they did not receive treatment they would die. The very treatment has now led to a double disadvantage where not alone are they haemophiliacs but they have now developed HIV positive, full-blown AIDS. Because of that they are different from other AIDS sufferers and must be treated accordingly.
The task for the Government is to find a realistic and workable solution to alleviate distress. Legal action by the Haemophilia Society on behalf of its members is, I understand, unlikely to succeed and would not prove a solution in the short term. The task is urgent. The Government will be aware of the strength of feeling within the haemophiliac community, of the grave anger felt by families at their predicament and of the groundswell of popular support in this country. The Haemophilia Society, I believe, have made a reasonable and a well-thought-out-request to the Minister but, unfortunately, the Minister has failed to respond.
With this motion we are also taking a motion in the name of the Labour group. I hope we will have all-party support for this important motion before the House today. If Members of the House feel they cannot support it, at least they should desist from voting against it. If Seanad Éireann passes the motion it would be seen at its best and if the Minister concurs with that view then his Government will be seen at its very best.
