Wednesday, 10 July 2019
Genetic Testing: Motion
That Seanad Éireann-
bearing in mind:
- that screening for genetic disorders would allow for life-saving treatment for at least one child per week,
- that this represents a considerable saving to the Exchequer in terms of obviating lengthy, expensive and ultimately ineffective treatment,
- that Italy has gone from 4 to 40 screenings in one year,
- that the Italian authorities have offered to assist Ireland in expanding the genetic testing system here,
welcomes the positive attitude of the Minister for Health, Deputy Simon Harris, and requests the Government to immediately instigate a programme of expansion of screening for genetic disorders in Ireland.
This is one of the most important debates in which I have taken part in the past 32 years in which I have been a Member of the Seanad. As a result of the debate this evening we may in fact operate to save the lives of up to 50 newborn children. We are greatly honoured to be the presence of the family of Les Martin, his wife, Lynda, his daughter, Holly, and his two sons, Cathal and Ciarán. They are a remarkable family. If one looks at the picture on the front of the briefing document they gave us, they could be an advertisement for a health farm but, unfortunately, they are an advertisement for an ill-health farm because of the situation regarding two of their children.
I previously raised the issue in February because I was contacted by Mr. Martin. The two children, Cathal and Ciarán, suffer from metachromatic leukodystrophy, which is a very rare disease but it can be addressed. If children are diagnosed early enough they can go through life without any serious disadvantage. That is the situation we are addressing. Cathal was two and a half when he was diagnosed, which was far too late and, unfortunately, there is virtually no hope for him.There is, however, hope that by pushing this measure we can ensure that no further children are left to die. This will be lasting testimony to the brief life of Cathal Martin. Les Martin's other child, Ciarán, was taken to Italy for treatment.
I am sorry, I should have said that I particularly welcome and appreciate the presence of the Minister tonight because I understand that he is not at all well. He has come here from his sick bed to be with us and that is extremely important. It is an indication of how seriously the Department of Health is taking this matter. I know the Minister has met with the Martin family. They are interested in having a law passed. At the instigation of a Senator, Paola Taverna, a law was passed in Italy which has radically changed the situation of these children. I have taken steps to prepare such a law. I was speaking with the Minister of State, Deputy Finian McGrath, and he said that his Department will be happy to co-operate with me. I hope to have such a law prepared by the autumn. With the co-operation of the Government, I believe it will be passed.
As I have said, the Martins are a wonderful, engaging family with three children. There is a need for an expanded national screening programme and for laws to protect children from these very difficult situations. At the moment eight rare diseases are screened for in Ireland. In the United States that number is 35 and in Hungary it is 26. Italy increased the number from four to 40 within the space of one year. We can do the same and we must in order to help these children.
The cost of the screening process is €50 per child. It is a heel-prick test. A tiny sample of blood is taken from the heel of a child. This is done between 48 hours and 72 hours after the birth or before the baby goes home from the birth centre. A small blood sample is taken from the baby's heel and then blotted and dried on filter paper. It is a dried blood spot. The sample previously used to screen for phenylketonuria, congenital hypothyroidism and cystic fibrosis as part of the compulsory regional screening system. It can now be used to screen for 40 disorders. No further samples are needed. This is what we need to do here.
It is a perfectly simple thing and it costs only €50. I know the Minister understands this situation. He should think of the millions of euro that will be spent on treating these children as they proceed on their tragic journeys. It is unnecessary. It is really tragic for a beautiful family such as this to have deal with their children having such conditions. The cost would be €3.5 million in a year but it would save hundreds of millions of euro in treatment costs. There are 62,000 children born in this country every year. One in 1,250 will have a rare disease. The HSE says that it is possible to implement this immediately, so let us do it.
We should also consider the possibility of having a rare disease day in Ireland to let people know about them. Without Les Martin and his family, none of us would know about this. It is his campaign that has alerted us to it. The HSE seems to be on board. The Department of Health produced a rare disease plan for the period from 2014 to 2018. So far only two of the 48 items in that plan have been actioned. I will quote from page 26 of this plan. Under "Weaknesses of current National Newborn Screening Programme" it says "Newborn screening is an essential public health responsibility, not currently mandated by law and lacking the appropriate legislative framework in Ireland." This evening I am committing myself to introduce such a law in co-operation with the Government. The plan goes on to say:
There is no health economics evaluation of newborn screening. There is a lack of patients’ advocacy groups, in particular for newborns, and a lack of public understanding of the merits and public health consequences of appropriate newborn screening for the Irish population. Difficult economic conditions and a health system under reform and reorganisation present considerable challenges to the Newborn Screening Programme.
We are somewhat out of the woods with regard to the financial collapse. I know we still have a debt of €205 billion, which is pretty shocking, but 300,000 families are living at home with children with rare diseases. They are acting as carers for these unfortunate children. Mr. Martin has told me that he has spoken at length with the four key people in the HSE and the Department of Health who run the screening programme and they agree with his suggestion. They agree that expanding screening is the correct thing to do but they cannot say so publicly because the HSE operates on the basis of collective decision-making and so has to show a collective front.
The answer is to screen for everything. That decision will be made by the national screening board which will soon be in place. I very much welcome its establishment. I also welcome the Minister's positive attitude with regard to these matters. I am concerned, however, that it will take the board ages to act and that it will look into every single individual condition. That would take forever. We need a law which will introduce such screening. Let everything else follow from that.
Mr. Martin used an interesting analogy. The construction of the M50 allowed for the development of industrial areas and adjoining towns in subsequent years. People are concerned. They ask what will happen if, after introducing these measures, other issues arise. Let us put a catch-all phrase in the Bill which would cover any further rare diseases for which treatment is available. Concerns about privacy have also been expressed to me. There is concern about the selling on of genetic information and so forth. This legislation would include a privacy clause to deal with such a situation. There are also side benefits to this. The detection of 50 new patients with rare conditions offers a wonderful opportunity to examine these conditions and to study them scientifically and medically. There is the possibility of terrific investment in research.
Questions on this issue have been raised in the other House. On Wednesday, 19 June there was a Fianna Fáil motion on maternity care to which Sinn Féin proposed an amendment - and I commend Sinn Féin on this - which said that 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 was voted on in the Dáil on Thursday, 20 June. That is a wonderful advance but we need a bit of action on it. It is not enough just to have a vote. We have to see a bit of action to go along with the vote.
The law will ensure that the screening programme proactively looks outward every two years to revise the lists of conditions screened for, thereby protecting it into the future and consigning to the past the sight of grieving parents. We have two grieving parents with us this evening. They are asking for their kid's disease to be included so that the next child might be saved. I know it is wrong to involve the President of Ireland, Michael D. Higgins, in these matters and I do not intend to do so, but there has been communication with him and he has indicated that he sees this as a human rights matter. That is all I will say on that point. He is not saying that we must introduce a law, just that the issue is one of human rights. Once again, the President is 100% right.
The referendum on the repeal of the eighth amendment was passed. I was in favour of repeal. Abortion is a very difficult issue to address and the Minister did so very honestly and very openly, as did the Leader of the House, Senator Buttimer. He was absolutely excellent in chairing that committee. We were able to open ten abortion clinics in one year. Why can we not do the same to save lives? 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 that continue to live?
The HSE might argue that 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 are going to exist anyway. 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 will once again say that I am extremely grateful to the Minister for coming from his sick bed to address us this evening. It is a token of the interest he takes in the matter. As I have said, he has met with the Martin family already. I believe the Seanad will do something extremely important and historic. I have met the parents and their children. They are the most delightful children anyone could possibly meet. This is important. Cathal has very little chance but he will leave behind a lasting memorial for the lives of up to 50 children who will be saved as a result of his circumstances.