Friday next, 28 June, is International Neonatal Screening Day. Can the Minister please provide an update on the roll-out of spinal muscular atrophy, SMA, in the national newborn blood spot screening programme, or the heel-prick test as we refer to it? Will she indicate when she expects the first baby to be tested in Ireland for this potentially devastating disease? The Minister for Health, Deputy Donnelly, has committed to implementation by the end of 2024, but when answering some parliamentary questions, he suggested that we may have to wait until the new lab at the national children's hospital opens before screening can commence. Given the delays facing that project it would be a significant disappointment for Spinal Muscular Atrophy Ireland, the families and the people they represent if this is the case. It is a rare genetic disorder causing muscular degeneration that can be fatal by the age of two but symptoms often do not show until the child is three or four months old. By then, irreversible damage has sometimes already occurred. There are several treatments that can halt the progression of SMA, so early detection is vital.

Since May 2022, babies are being screened for nine conditions, up from eight previously. Last year, the Minister, Deputy Donnelly, approved recommendations from the national screening advisory committee to add a further two new conditions to the programme. This would bring to 11 the number of conditions screened for as part of what is commonly known as the heel-prick test in Ireland, which is a 37% increase. A total of €1.4 million of new development funding has been allocated this year to support the expansion of the programme. The implementation of these two conditions to the newborn screening programme is under way involving close and regular co-ordination between the HSE and Department of Health on an ambitious timeline to ensure that validation of the additional tests begins in 2024. I understand how difficult it is for parents whose children have received that diagnosis. I thank the Deputy for raising this matter.

I thank the Minister for taking the question. On a similar theme, Members may be aware that I chair an informal all-party Oireachtas committee on rare diseases. We held one of our regular meetings yesterday. Ireland used to be a world leader in newborn blood screening, or the heel-prick test as Deputy Tully referred to it. Countries in eastern Europe seem to have leapfrogged us notwithstanding the work we are doing. I very much welcome the significant increase in the number of diseases that are tested for. Some countries test for up to 37, so the Minister will agree that we have a long way to go. One test was mentioned yesterday specifically by one of the experts present, which is severe combined immunodeficiency, SCID. If not tested for early, this can be fatal. However, it is actually very treatable if it is tested for early. Live vaccines can be dangerous for babies who have SCID. Can the Minister give us a little more hope that the number of diseases we screen for will be significantly increased in the years ahead?

The advances in technology and the treatments for many of these conditions are continually emerging. This is very welcome and it is why the expansion of the newborn blood spot screening is a priority for this Government. Significant progress has been made over the past two years. We have gone from eight up to 11, but we acknowledge there is more to do. Les Martin and others have been great advocates, as the Deputy has been. The number of conditions being screened for has expanded from eight to 11 but we do want to go further and faster. The Minister, Deputy Donnelly, is committed to that.