Ceisteanna—Questions. Oral Answers. - Assistance for Haemophiliacs.


asked the Minister for Health if he will outline his response to the request of the Irish Haemophilia Society for assistance for those haemophiliacs who are HIV positive; and if he will make a statement on the matter.


asked the Minister for Health the proposals he has to compensate or financially assist those haemophiliacs who have contracted the AIDS virus or AIDS antibodies; if he will respond to the suggestions made in the submission made by the Irish Haemophilia Society in May 1988; and if he will make a statement on the matter.


asked the Minister for Health if he received a submission and proposals from the Irish Haemophilia Society in May 1988; the reason he has not responded to date; and if he intends accepting the very reasonable suggestions of the society.


asked the Minister for Health if he has any proposals to set up a trust fund or provide any financial assistance towards those haemophiliacs who have been exposed to the HIV infection from blood transfusions; if he has any proposals to assist them with their problems arising from the spread of AIDS in this way; and if he will make a statement on the matter.


asked the Minister for Health if he has received a submission from the Irish Haemophilia Society in which it sets out the following information concerning the 296 haemophiliacs registered in Ireland: (a) 265 have been tested for exposure to HIV; (b) 106 have been infected with HIV; (c) nine have developed fullblown AIDS; (d) four have died and (e) 70 per cent of severe haemophiliacs have been infected; if he has studied the various proposals which the submission has made and which cite the need for Government action; and if, in respect of those proposals, he will make a statement on the matter.


asked the Minister for Health the plans he has to award financial assistance to haemophiliacs who contracted the AIDS virus from contaminated blood products; and if he will make a statement on the matter.

I propose to take Questions Nos. 10, 14, 47, 48, 49 and 50 together.

I have given careful consideration to the important issues raised in the society's submission. The issues raised are indeed central to the lives of all those infected by the HIV virus and to their families.

I recognise that tragically many families in Ireland will be affected by the AIDS epidemic. Those effects will be very direct for the immediate families of married haemophiliacs who are infected. They will also be very direct for the families of intravenous drug abusers who are infected and there is the additional tragedy of over 53 babies born to these couples being infected also.

The Government have already done much to prevent the further spread of HIV and to provide services for those, including haemophiliacs, infected with the virus and these measures I have outlined previously.

In addition to these measures, a wide range of other measures have been introduced to prevent the spread of AIDS and to care for those infected. In identifying and introducing measures, care has been taken to ensure equity and easy access to services within the resources available. In this regard, the Government provided the Minister with a special allocation of £450,000 for special AIDS programmes out of the national lottery funds, in addition to the normal costs of treatment and testing. Already the Department have been able to provide funding for additional counselling services at St. James's Hospital where the national haemophilia unit is located. The society itself has benefited from this funding.

As regards the cases of full blown AIDS, these are increasing rapidly — there were 33 cases up to the end of 1987, there were 69 at the end of 1988 and there are now 77 cases. It is evident that many of the HIV positive cases, of which there are currently 793, are progressing to full blown AIDS and that there will be a continued increase over the next number of years.

Against this background, the responsibility of Government is to continue to plan and provide appropriate medical and welfare services to all those who are affected, directly or indirectly, by AIDS. This offers the most effective strategy for dealing with AIDS, which is a long term problem and one which is very broad in its ramifications.

I wish to assure the society and the Deputies that the Government share their concern about haemophiliacs infected by HIV and in this regard, I will be meeting the society on Friday, 10 February, to discuss the matter further.

May I ask the Minister if he accepts that 106 persons suffering from haemophilia were infected with the AIDS virus through their medical treatment, that this medical treatment was provided to them by the Government and that, consequently, the Government have a clear moral obligation to help these people and to distinguish between them and others? These people are desperately pleading for immediate financial assistance. Is the Minister aware, for example, that the British Government have already made a £10 million fund available as well as weekly dietary and travel allowances to people in Britain and that other European Governments have made similar arrangements? In view of the difficulties these people have with the insurance cover, mortgage repayments, and financial needs for special diets, travel and so on——

I ask for brevity having regard to the number of Deputies interested in this subject matter.

——can I ask the Minister if he will respond to the request of the Irish Haemophilia Society to set up a special fund now and make available what they have requested, and said is a reasonable sum, £400,000——

I think the Deputy has made his point.

——to start that fund?

While I share the Deputy's concern about those suffering from AIDS as a result of receiving Hfactor, with regard to a Government's responsibility obviously if a Government knowingly gave products that would damage somebody's health, I could accept the Deputy's point but the treatment was necessary at the time — without this treatment the haemophiliacs would not have survived — and it was not known that it could cause the AIDS virus. However, the Government must also take account of any innocent victim of disease, and indeed any victims of disease whether they are innocent or contributed to it themselves. There are other areas, for example, the children of drug abusers. These children did not in any way contribute to the disease. I believe that the obligation on a Government is to ensure that they provide the very highest level of service possible for all AIDS sufferers. I know that the British Government have made a special allocation to the haemophilia society there but most of the countries in the EC do not have a scheme, for example, France, Italy, Greece, Belgium, Luxembourg or Portugal.

May I ask——

A Cheann Comhairle——

Order, please. I am calling Deputy Ivan Yates. I am calling the Deputies who are present in the House and who have tabled questions in respect of this subject matter.

On a point of information——

Order, please, Deputy, I was making a statement. I will call Deputy Barry, Deputy Yates, Deputy Howlin and Deputy McCartan. Deputy Gregory has already put his question.

I want to point out that my question was next in line to Deputy Gregory's.

That may be so but the Chair also has regard to parties in this House.

Would the Minister accept that this is a finite problem in so far as heat treatment is now available in blood transfusions and, therefore, the likely number of HIV cases is not likely to increase and would he agree that for every country he listed there is a list of countries which were in a similar situation to Ireland but which have set up ex gratia payments? Would he not agree also that the best way to meet the multi-faceted needs of these haemophiliacs and perhaps other AIDS sufferers is to set up a trust fund which would allow minimum Exchequer guaranteed funding per annum and non-Exchequer funding from perhaps drug companies and others? That would be a compassionate response from the Minister.

I agree with the Deputy that the problem of AIDS and haemophiliacs is a finite one in so far as in the treatment available to haemophiliacs the risk of AIDS has been eliminated, that is so far as we can foresee at this point. I think the Deputy implied in his question that the fund should perhaps be extended to other victims of AIDS. This is the whole difficulty in this area because as I see it the Government have a responsibility to all AIDS victims to ensure that they are provided with the very highest level of services available. If one were to provide special facilities for victims of AIDS and not extend them to victims of other terminal illnesses it would create further problems. We have to ensure that there is equity in the system. As I said, I will be meeting the Irish Haemophilia Society tomorrow to discuss their position with them.

While accepting what the Minister has said would he not agree that there is a list of countries who have given aid already by way of ex gratia payments and that we are talking of a very limited number of people in unique circumstances and that, therefore, the compassionate response from the Government which Deputy Yates spoke about is justified? We are talking of something that will not be repeated.

I understand that the Governments in three countries have made payments. These are, the United Kingdom, Denmark and Norway.

West Germany too.

And America.

The combined knowledge of the House says about ten countries.

The information I have — and one of the reasons for the delay in making a statement on the matter is that we were having consultations with various embassies — is that the Government of West Germany have not provided money and that it was made available through a different compensation scheme.

Ex gratia payments.

Deputy Brendan Howlin.

There are schemes in these countries to deal with these people.

Order, please, Deputy Howlin has been called.

Would the Minister not agree that while there may not be a legal responsibility on the Government, because of the provision of contaminated H-factor to haemophiliacs there is a very strong moral responsibility on them to act? Would he further accept that not only are the group definable, and that there will not be a recurrence of what happened but that time is of the essence in that people who have developed full blown AIDS obviously need assistance on an immediate basis? Finally, would he accept that it is not helpful to the campaign against AIDS for the Minister to refer to some as "innocent" sufferers and others presumably as somehow "non-innocent"?

Deputy Howlin raised the question of moral issues. One of the difficulties is that if you make a moral judgment to grant aid one group but not another group, that would create an inequity that would not be supportable. I believe my obligation is to ensure that we look after all victims of AIDS.

It is a disingenuous argument by the Minister to say he will do nothing for haemophiliacs on the basis that he is doing nothing for other groups. He spoke of equity but at present there is nothing available for haemophiliacs. Other Deputies made the case very eloquently for a meagre trust fund for these people but I want to ask the Minister about the proposals in the submission he has had since May of last year. In my question, I asked about the other suggestions in that submission. Does the Minister have anything to say to us about the proposal with regard to life insurance, mortgage protection insurance or increased welfare payments or assistance for those who are in difficulties.

I do not know on what basis the Deputy makes the assumption that I said I would do nothing for haemophiliacs. In reply to the questions, I stated that I was meeting the society tomorrow and I would discuss their needs with them.

This House is entitled to hear from the Minister.

Please, Deputy McCartan, let us hear the Minister. Many questions have been asked.

I can tell this House now that I want to ensure that they have ready access to all the services to which they are entitled under the laws of the State and to hear from them if there are specific problems of access to the services. Some other points raised by the Deputy in relation to specific areas of difficulty such as mortgage subsidy are not the direct responsibility of the Department of Health. However, I shall bring these points to the attention of my colleague, the Minister for the Environment.

I call Deputy Gregory. I shall then call Deputy Garret FitzGerald for a final supplementary.

Would the Minister not take another look at the schemes in other countries — for example, the £10 million trust fund in Britain, the Royal Foundation in Spain, the ex gratia payments made in Denmark and Norway and, according to our information, in West Germany, also? Would he not accept that there are specific financial problems experienced by families of haemophiliacs suffering from the AIDS virus? There is a clear line of responsibility on the part of the Government towards these people. The Minister talks about equity. How can he justify giving £500,000 to racing boards and refusing to give anything to people who now suffer from a deadly disease as a direct result of receiving Government medical treatment, the substance of which was infected by the virus? It is totally inequitable.

I did expect brevity from the Deputy, and relevance.

As I have said, I am meeting this society tomorrow to discuss their needs.

But the Minister has known of their needs for the past 12 months.

He has done nothing for them.

I have already explained to the House this afternoon that I am meeting them to assess their needs in terms of what is available in existing services.

When will they have a decision?

Would the Minister accept that there is deep concern on all sides of the House on this issue? The origin of this concern arises from a sense of moral responsibility. We as legislators — and some of us in Government at the time — carry the responsibility for health provision which, through nobody's fault, led directly to this effect on the people concerned. The Minister would appear, from what he has said so far, to be the only person in this House who is not willing to face that issue or responsibility. In the light of the views expressed — and I know that they come from the other side of the House as well as this side — will he reconsider the position in the light of this issue of moral responsibility which he has not, up to now, been willing to address?

I have every sympathy with those who contracted AIDS through the particular treatment they received at a given time. As I see my responsibility as Minister, it is to ensure that adequate services are provided for all victims of AIDS. I see a problem in identifying one group suffering from a specific illness. Let us take the example of a man with a wife and three children and a similar family living side by side, both men suffering from AIDS, one as a result of treatment for haemophilia and the other perhaps as a result of being a bisexual in days when nothing was known about AIDS. I have a difficulty in deciding, if both men were to pass on this disease to their wives, that I should support the widow of one and not of the other, who may well be the victim of the situation. My responsibility is to ensure that all patients suffering from AIDS are properly treated and looked after in this State.

I call Question No. 11.

Could I ask the Minister——

Deputy De Rossa, you will acknowledge the Chair. I will call you when I deem it appropriate. May I take it that you will be very brief?

I am always brief.

Would the Minister not accept that we are not seeking attention for some and none for others? What we are seeking is that the Minister acknowledge that the people in this situation, haemophiliacs, have contracted the disease as a result of medication provided by State agencies and that on previous occasions, in relation to the threein-one vaccination scheme where children have been damaged, the State has accepted a special responsibility in that regard?

I accept that in previous cases where the State did accept responsibility that was where a product was produced by the pharamaceutical industry which has accepted responsibility. Responsibility has not been accepted, as I understand, either by Governments or, indeed, by the pharmaceutical firms that produced the various factors.

It should be.

The Minister is responsible.