David Norris (Independent) | Oireachtas source

I move: "That the Bill be now read a Second Time."

I thank the Leas-Chathaoirleach. I should first explain my appearance. I was in hospital yesterday and I had a surgical procedure to remove some blemishes from my forehead, as a result of which I look as if I had measles. I want to assure colleagues that I am not infectious and that I do not have measles.

I realise also this has been a very busy day for the Minister. I greatly appreciate that he has taken the trouble on such a very busy day because of Covid-19 to be here with us. In the spirit of positive co-operation, I have had a very good meeting with civil servants on this Bill and I see Ms Flaherty is in attendance to advise the Minister. That is also very much appreciated.

This Bill will have the effect, if implemented, of saving the lives of 50 infants per year. I cannot imagine that any one of my colleagues will wish to vote against a proposal that would save 50 lives per year. As I may get the opportunity to say later on, this is the real pro-life movement. I have also said to Senator Mullen that I am hoping that he will speak on this Bill from a pro-life perspective. I note that the Minister has put down an amendment and I will not be calling a vote on this as I would consider it foolish. I am also very grateful to the Minister for putting this amendment down which asks that the Bill be read a Second Time this day 12 months to allow for further consideration, etc. Can the Minister reduce that period to six months? There was the suggestion that it is always 12 months. It is not. I am here for 33 years and I have seen periods of three months, six months and nine months. I am choosing the median and I asked the Minister that he might graciously consider the period of six months.

This Bill is urgent because now, in a table of 60 countries, including all of the European Union and the rich countries of the world, we are fourth from the bottom. That is not a good position to be in. I know that the Minister has indicated that we will be adding one new category this year but one category a year is fairly glacial progress. This Bill will have the effect of pushing things forward.One of the other things I am particularly interested in is the question of a statutory footing. I would like to explain to the House why I am doing this. Putting the Bill on a statutory footing provides for greater accountability to the Minister and the Oireachtas. The Schedule at paragraph 10 requires the chairperson of the committee to appear before an Oireachtas committee when requested. Section 5 of the Bill requires the committee to prepare and lay before the Houses of the Oireachtas a report on the test and whether conditions should be added to it, which must be done within six months of the Bill being enacted. The committee will also be obliged to report annually on the programme and the addition of conditions to the list. By putting pressure on the committee to do so, further pressure is placed on the Minister, whereby he must make a statement to the Dáil as to why he is not taking on the recommendations of the committee. We would not be able to require the committee to do this report if it were not on a statutory footing. I understand that the argument from the Civil Service is that this is going to lead to a lot of bureaucracy, red tape, delays and the rest of it. I find that an astonishing argument to come from the Civil Service because I would have imagined it would claim to be efficiency plus. It is simply not true. I would like to emphasise this point to the Minister. Requiring the Minister to lay a report before the House every six months provides a degree of statutory urgency and a compulsion. The whole process will be speeded up.

The objective of the Bill is to provide for the extension of the national newborn blood spot screening programme. One of the arguments usually used against this kind of progressive measure is that it is going to cost the Exchequer money. In the long term, it is not. Providing for screening for conditions for which there is treatment will obviate ineffective, lengthy and expensive treatment for the children involved, so we are going to have a very considerable saving. I understand also that questions have been raised about Italy. In my original submission I said they had gone from screening for four conditions to 40 inside one year. Apparently this is spotty and not general throughout the whole of Italy. Some provinces are a little bit tardy. The Italian Government is at the moment processing legislation to make it general so that argument falls as well.

I was originally contacted by a remarkable man whom the Minister knows as well, Les Martin. He has three children, Cathal, Ciaran and Holly. The two boys have a condition called metachromatic leukodystrophy. Cathal was diagnosed after two and a half years. That meant it was too late for him. It is probably too late for Ciaran as well. Les Martin has suggested that the popular name for this Bill should be Cathal's Bill to reflect the important part he has played in this process. It is really remarkable and astonishing that a man like Les Martin - who has the most lovely family, a real picture-book family of attractive, lovely people and three wonderful children - in the agony of watching two of his children progress towards death, would have the generosity of spirit to go out and try to ensure that this does not happen to another family. That is a generosity that we in the Seanad could look to as an example. The cost is €50 per child, or €3.5 million, and it would save hundreds of millions in treatment. The HSE says it is possible to implement this immediately so let us do it.

I have also had a letter from a lady who wanted her name to be on the record, Samantha Kirwan. She has a child who is also caught with metachromatic leukodystrophy. It is a terminal and very progressive condition. Amelia has the juvenile onset form, with a life span of ten to 20 years or fewer.She has lost her ability to walk and feed herself properly. Her speech has slowed and she is confined to a wheelchair. She went from a normal healthy baby to having everything taken away from her. It is important to mention these cases.

This has been in the political works for quite some time. On Wednesday, 19 June, my Sinn Féin colleagues in the Lower House tabled an amendment to a Fianna Fáil motion on maternity care. That amendment stated we must guarantee the right of every child born in Ireland to be screened for all diseases for which there is a viable treatment. This is also my position. I do not see any great point in screening for diseases for which there is no treatment but we should confine it and focus on this. The Dáil voted on that motion on Thursday, 20 June, and it passed so we have a track record there.

Without involving the President, Michael D. Higgins, in a political debate, I want to mention that he was contacted about this and he expressed his belief that it is a human rights matter. It is the right of a citizen to be treated in a way that is sympathetic to their proper development.

I was involved in the referendum on the eighth amendment and I was in favour of repeal. Abortion is a very difficult issue to address and the then Minister did so very honestly and openly, as did the then Leader of the House, Senator Buttimer. He was absolutely excellent in chairing the committee. We were able to open ten abortion clinics in one year. Why can we not do the same to save lives? This is a pro-life position. We opened ten abortion clinics. Can we not open genetic screening testing facilities? The saving of life is even more important than providing facilities for abortion. We spent so much time convincing ourselves that abortion should be allowed, why should we not do something for the babies who continue to live? I came up with what I thought was rather a good phrase about this business of postponing or referring. Long fingering is failing people. Long fingering is wasting time. What we need is action.

That HSE might argue we cannot screen for every disease if we do not have the facilities to care for those who have them. That logic is flawed. The patients will exist anyway. We will not get rid of them by just making a statement. They are going to be there and they are going to require treatment and that treatment will be expensive. They are going to come into existence and they will die. Screening is available for €50 a child so there is no excuse whatsoever to delay its introduction.

I greatly appreciate the positive attitude of the Minister and his advisers. I look forward to a situation where we can progress the Bill and save the lives of 50 infants. This is one of the most important debates in which I have taken part during my 33 years in the House because the opportunity to save life is so valuable. The Jewish people have a phrase that he who saves one life saves a universe. We have the opportunity to save 50 lives and I know the Minister in his heart believes this is an appropriate course for us to take. We will all be supporting him in this.