Speech on National Screening Advisory Committee Bill 2020: Second Stage

30 September 2020

Ivana Bacik

I welcome the Minister to the House and I commend Senator Norris on proposing this important Bill, which I am delighted to speak in support of on behalf of the Labour Party. I commend and pay tribute to Senator Norris for his immense commitment to persisting on this issue. In the previous Oireachtas term, I spoke in support of the motion the Senator tabled on this same issue on 10 July 2019 in a different political, economic and health context. He has moved the debate forward by bringing that motion to the House last year and introducing this strong legislation.

I am delighted to support the Bill in both of its aims, including in its purpose of expanding the national newborn blood spot screening programme and in its provision placing the national screening advisory committee on a statutory footing. We addressed both of these issues in our motion last year. I was looking back at the note, which shows that motion was passed unanimously by the Seanad. I know the Government has put forward an amendment to the effect that the Bill would be read a second time 12 months from today. While it is a matter for Senator Norris as to what he does, it would be a shame if there was a division in the House given that we passed the motion unanimously last year. There was such strong goodwill towards the motion and the then Minister for Health, Deputy Harris, spoke strongly in support of it, as Senator Norris will recall. I agree with the Senator that six months would be better and I share his impatience.

It is important that we move forward in a united fashion to ensure the important provisions in the Bill are implemented. In that regard and as others have done, I pay special tribute to Les Martin, his partner, Lynda, and their children, Holly, Cathal and Ciaran, who have been tireless in campaigning for the expansion of the newborn screening programme. Others have referred to their heartbreaking story of having two sons battling with a rare condition. I mention the immense and positive work they have done, not just in Ireland but also in Italy, to ensure that life-saving treatments will be made available for other children where early screening can be carried out.

Both in preparation for that motion last year and for the debate on this Bill, we have heard evidence of the huge value an expanded newborn screening programme could provide. We have heard about bill 167, which was passed in Italy in 2016 and which provided a statutory basis for the screening programme there. As colleagues mentioned, the Italian programme screens for 40 conditions, which is a much wider range of conditions than are screened for in Ireland. We know that only eight conditions are screened for in Ireland under what we all know as the heel prick test, as Senator McCallion said. There is a wide variation across different EU member states. Some 29 conditions are screened for in Poland but as few as two are screened for in Malta. I know there have been debates in the European Parliament and the Organization for Security and Co-operation in Europe, OSCE, about trying to ensure a more consistent approach.

We know the immense value of this early screening. As the explanatory memorandum points out, early newborn blood spot screening can ascertain whether children are suffering from certain disorders or conditions which are treatable if identified at an early stage. That is why we refer to this proposal as being genuinely life-saving. It is because early detection and prevention can lead to genuinely life-saving treatment. I recall watching the heel prick test being carried out as a new parent. It is quite traumatic, when a baby is only a few days old, to see the test being carried out but it is so important. It is a minimally invasive procedure, yet it has such a beneficial effect, even if we are only screening for eight conditions, as we are in Ireland.

It is especially beneficial when it is used to screen for many more disorders in, for example, Italy. Interestingly, the test is mandatory there. There is another debate to be had about mandatory versus voluntary screening tests. Ireland has a high uptake rate of the heel prick test. Every parent recognises how important it is. However, we have seen some alarming drops in uptake rates in child vaccination programmes. Other colleagues, in particular Senator Conway, referred to the wonderful Laura Brennan. I join the Senator in paying tribute to her considerable work throughout her life in support of vaccinations and encouraging more parents and children to have vaccinations. There has also been significant work done by Vicky Phelan and other campaigners in the context of the cervical smear controversy. Their work has sought to ensure high uptake rates of the cervical cancer vaccine as well as other childhood vaccines.

Who would have predicted a year ago when we debated this motion the immense focus on vaccines in the context of Covid? It is important for all of us as public representatives to speak in support of vaccination and the principle that vaccines save lives and are safe, and to urge parents to take up the vaccination programmes that are rolled out.

I strongly support this Bill. Labour Party Senators signed up to the motion last year and are signing up to the Bill this year. We commend Les Martin and his family on their considerable work. Front-line organisations have worked with Les Martin and Senator Norris, including the Jack and Jill Children's Foundation, the LauraLynn Children's Hospice Foundation, Enable Ireland and Rare Diseases Ireland. All of those organisations have been pushing for this Bill. They represent parents and families on the front line of caring for children with life-limiting conditions. They have seen the benefits on a human level of supporting legislation of the sort that was passed in Italy.

The other aspect of the Bill seeks to put the national screening advisory committee on a statutory footing. That has been an important development since the House last debated this issue. I welcome that the committee's inaugural meeting was held in December and that there has been a further meeting, but it is important that there be a statutory basis for the committee. I support Senator Norris's provisions setting out how the committee will operate.

I thank Senator Norris for his commitment to this issue, express the support of the Labour Party in the Seanad and in the Dáil for when, rather than if, the Bill gets to the Dáil, and urge the Minister to move forward in a timely fashion and ensure that the Bill becomes law. We owe it to Les Martin, his children and all the families that are facing the terrible diagnoses that affect so many children to remember, as Les Martin has told us, that legislation of this sort, which expands the programme, could save up to 50 children's lives per year. We have seen that life-saving effect in jurisdictions like Italy.