I thank the Chair for giving me an opportunity to raise this matter. Anyone who listened to "Morning Ireland" this morning would have heard Brian O'Mahony, a member of the Irish Haemophiliac Society, speak about the dreadful situation facing haemophiliacs at present. I am very grateful for the opportunity to discuss this matter and for the first time to put on the record of the House the facts and reality of the desperate suffering of these people.
At present between 200 and 300 people in this country are affected by this blood disorder. The disorder is treated by using clotting factor concentrates made from human blood. Blood transfusions are an essential part of the lifestyle of haemophiliacs who have no choice in the matter. They have to keep taking the factor concentrates in order to maintain their health. The reality of being a haemophiliac or having a haemophiliac in the family is sad and difficult enough but on top of this, these people have now to cope with a further critical health problem which is that around 40 per cent of the total number of haemophiliacs in the country are now HIV positive and 12 of them have AIDS. I will deal later with the conditions in which this infection happened but for now I want to appeal sincerely and passionately to the Minister to take this issue up and treat it with the absolute urgency it requires.
Let me give some idea of the way in which this awful problem has directly affected this small vulnerable group. 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 numbers in this country there are families where two brothers are haemophiliacs or a son, a father and an uncle are all affected.
Similarly the HIV infection has hit more than one member in some families but given the awful anti-social nature of AIDS and the degree of poor understanding and information generally about AIDS, the people affected in the haemophiliac community are in a stage of siege. We are talking about normal, ordinary families living in the country or in suburbia, with children going to local schools and wanting to live a normal life but they are locked up with their dreadful secret and terrified that anyone will begin to ask questions or see them as a health risk. They feel ostracised and abandoned and are unable to fight their own cause at present. Luckily they have a splendid panel of officers in their society who have taken the initiative on this issue and are asking for help to which they claim they are rightly entitled.
The group I am speaking about today are a group of individuals who badly need all the power and force of political action it is possible to muster. The problems of the 106 people affected go far beyond the problems I have described. They can make no provision for themselves or their families on live insurance, or mortgage protection insurance and on pension investment. Out of 43 HIV infected haemophiliacs who were surveyed in 1988, 14 had life insurance and of those only two were insured for £20,000 or more. Of those 43, only 13 owned their own homes, nine of those 13 had a mortgage to repay but only four of them had mortgage protection insurance. That is the financial reality.
Because of the infection they can make no provision for themselves or their families on life insurance, mortgage protection insurance or pensions. 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. But there is even worse than that. Within the numbers I have quoted are ten people who have full-blown AIDS and within this group I am talking about children as young as five and six years. At the end of November 1988, six haemophiliacs had died from AIDS. Now, only two months later, the figure is eight. This is why I have to stress again and again that time is of the essence; we cannot afford to put this issue on the long finger.
Let us look back at how this came about. Prior to 1986, blood which was bought by the Department of Health for use by haemophiliacs was imported plasma. In common with a number of countries Ireland imported FCII concentrates, mostly from America. The blood was marketed and distributed by drug companies here. This blood was collected from people by and large who were paid a price per pint and, in most instances, they were from the most deprived sectors of that community where there was more likely to be drug abuse, poor health and hepatitis. Since the problem manifested itself, unfortunately with such regrettable consequences, there has been a change in policy regarding blood collection here. Most of the blood used here since 1986 has been collected at home, is of a very high quality and is now heat-treated.
Though we have a situation in which a group of people who need transfusions in good faith use the blood which is available with the blessing of the Department of Health here, I feel that a debate in some place at some other time must look at why we did not follow the trend in those countries who are self-sufficient in blood collection. This indeed is a crucial question but as it stands at present there seems to be a very clear liability on the Government and on Government agencies.
When looking at the situation of haemophiliacs in other countries it is very interesting to note that countries like Belgium and Norway, who are generally self-sufficient in their blood supply, have dramatically lower numbers of victims than in any other country. We are not talking about a problem that is unique in Ireland. Haemophiliacs in all countries are battling with these difficulties but the difference is that in most other countries provision has been made for Government funding to individuals affected through blood transfusions. I will just give an outline of the provisions that have been made. In the UK, £10 million was given last year by way of financial compensation. Figures show that there are 5,000 haemophiliacs there, with 1,200 HIV positive or 27 per cent of the total.
In Spain, where the total number of haemophiliacs is 2,700, they have a HIV rate of 80 per cent or 2,200. A royal foundation or commission has been set up and payment of lump sums, pensions, etc. has started. Pharmaceutical companies have accepted the idea of producing a compensationary programme for sufferers.
In Denmark they have a 25 per cent level of HIV positive among haemophiliacs. The Government there are giving $38,000 tax free to each person involved. In Norway with a 26 per cent HIV rate among haemophiliacs, they have given $40,000 to each person. Germany have given very generous compensation but they had legislation on the statute book that made manufacturers of the blood substance liable and sufferers there have received up to $180,000 each. These arrangements and the methods found for paying compensation are documented clearly and I will make them available to the Minister and his officials.
We must follow the line of other Governments. I am quite sure that every fair-minded Irish citizen would want the Minister to respond in a practical and compassionate way. We are talking about a relatively small group, about whom we know a great deal and whose needs are well documented. The quality of their lives is poor and we, as legislators, are in a position to make a relative improvement in that. There could be no reasonable opposition to meeting the requests of the Haemophiliac Society which I know the Minister has in his Department. This is not an issue about which there is any divide. It is not a party political matter. Since I started working with the society Members from all sides of this House and in the Dáil have expressed support for this cause and agree with it.
This adjournment debate is different from most. I want to discuss and put on the record all aspects of this distressing problem but I want above all an assurance from the Minister that there will be action soon on the group's list of needs. I want an assurance that the Minister will not turn them down and turn it into a protracted cause. Time is of the essence. There is devastation among the families suffering at present. They need our unconditional and quick action and I ask the Minister to respond in a positive way.
