Senator Gerard Craughwell - speech from 30 Sep 2020

I am inclined to throw my speech out the window as well now. In rising to speak on this I want to commend Senator Norris like everybody else has but I am also mindful as I speak today of the parents around the country who are dealing with children with conditions or illnesses that might have been picked up had this been available some years ago. Most of us have come across somebody in our lives who struggles with a child that is terminal or a child that is suffering from CF or whatever the condition, a sentence of death early in life and it is pretty tough going. Senator Norris when he was speaking in July of 2019 he said this was one of the most important debates in which he had taken part in in his 32 years now 33 years as a member of the Shannas. I think that statement attests to both the seriousness of this issue and the relative ease with which it could be rectified. I would also like to acknowledge the role of Mr Les Martin, his wife Linda, his daughter Holly and his two sons Cahill and Ciaran for their role in ensuring that this bill meets the needs of families whose children are born with undiagnosed genetic illnesses and whose lives could be saved by an expanded newborn screening programme. As a father and grandfather it is unimaginable to me that my children or grandchildren might have been born with undetected but treatable conditions and that the length and quality of their lives would have been dependent on a programme which already exists but had not been expanded despite huge leaps in medical and genetic research. If passed, and I sincerely hope the bill will be passed and it looks like it will be, it will expand the National Newborn Bloodspot Screening Programme in Ireland which has the potential to allow for life-saving treatment for at least one child per week. As I speak on that, Minister, I listened to your argument on the delay of 12 months and I understand the rationale for it but I am also mindful of the fact that 50 children will not benefit in the interim while we are waiting. I do realise the rationale and I do realise that you will make every effort to come back sooner if you can. It is also to be noted that new conditions can be screened from the same healed bloodspot that is currently used. From Mr Martin we have learnt that not only has Italy increased its testing from four but has gone to 40. I understand that the Italian authorities are willing to share the technology and anything they have learned with their European colleagues and that is one of the great benefits of being a member of the European Union, that we have that cooperation right across the Union. It is to be noted that to ensure the viability and longevity of the newborn screening service in Italy, legislation was enacted to make the screening a mandatory national public service and every Italian newborn receives a free and compulsory test providing early diagnosis at birth for almost 40 rare metabolic hereditary diseases. My colleague Senator Batchick referred to that and that is another debate that we will have to have with respect to such things as screening and vaccines that have been discussed here today because life is important and the protection of life is important. The Bill before us today places the National Screening Advisory Committee on a statutory footing which I agree with. This was one of the many recommendations of the Scali report on our national screening programmes. The Bill will place the screening programme on a statutory footing. It will also ensure dialogue with stakeholders, full disclosure and accountability in respect of all screening programmes in the State. This is essential as it will ensure that the Committee is well resourced, forward-looking and proactive, not reactive in response to new conditions. The cost of the heel-prick test at the moment in Ireland is around €50 per child. Pittance in the overall scale of the national health budget, yet life-saving for the children who receive diagnosis. An additional cost to expand the programme would be far exceeded by the benefits. I am sure that there is no need to convince anyone in this House, on any side of the House, of this. In looking back over the history of the National Screening Programme in Ireland, it is hard to believe that we were considered to be leading lights in newborn screening and research in the world when the screening programme was first set up in 1966. Now, sadly, we would be considered one of the laggards, as we have not expanded the number of conditions, although I did hear today that we are moving in that direction, Minister, and I thank you for that. Early this year, Mr Philip Watt, Chair of the Rare Diseases Task Force, said that while an average of 20 diseases are screened from birth among babies in Europe, Irish hospitals only screen eight conditions, and you are telling us that that is increasing now. That contrasts sharply with some states in the United States, where babies are screened for up to 50 conditions. Currently, 42 children are born in Ireland each year with a condition that could be detected at birth and treated, but it is not. That is one baby in every eight days. I understand, Minister, that your predecessor, Minister Simon Harris and Finian McGrath were very supportive of this legislative proposal, and that Minister Harris had committed to sending his officialies to Italy to meet with the Italian counterparts when he was here in 2019, and I am not sure if that meeting has taken place. It did. It did. It did. Good. I know that with COVID restrictions this may not have happened, but clearly it has, according to Senator Norris now. We often use the expression, time is of the essence in this House, but it was never more vital than in this case. I am delighted and proud that Senator Norris asked me to be a signatory to this bill. I am delighted that throughout the House everybody seems to be supportive of it. Hopefully you will come back in six months, Minister, and say we are ready to move, that the interim report you have got has answered any questions that need to be answered. And to those parents out there, particularly to the young mothers who are pregnant today with children and are going through all the fears that go with bringing a child into the world, and fathers, I hope that they trust us, that we will do everything, move hell, heaven and earth, to get this up to the 42 tests as soon as possible. It is so important. It is so important. It is a long time ago since I was a first time dad, but I remember the fear, more so than anything else. I remember the fear of this tiny little thing coming into my life and being asked to pick it up. My daughter, I loved her, but to pick her up, she was so tiny, and the fear of breaking her in some way, and I would have walked over hot coals to do anything to solve any issue that she may have had. And I know every parent in the country is the same. There is a huge weight on your shoulders, apart from all of the other things that are going on here with COVID-19 and all of the other issues in health. But this is one that is a real winner for you and for every citizen in the state. Thank you very much. Thank you. Thank you.