Gerard Craughwell (Independent) | Oireachtas source

I join others in commending Senator Norris. I am mindful of the parents throughout the country who are dealing with conditions or illnesses in their children that might have been picked up had the service provided for in the Bill been available some years ago. Most of us have come across somebody in our lives who is struggling with a child who has a terminal illness or who is suffering with cystic fibrosis or some other condition. To have one's child given a sentence of death early in life is tough going.

Senator Norris, speaking in the House in July 2019, said that this was the most important debate in which he had taken part in his 32 years - now 33 years - as a Member of the Seanad. That statement attests to both the seriousness of this issue and the relative ease with which it could be rectified. I acknowledge the role of Mr. Les Martin, his wife, Linda, his daughter, Holly, and his two sons, Cathal and Ciaran, in ensuring this Bill meets the needs of families in which 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 that exists but has not been expanded, despite the significant leaps in medical and genetic research.

I sincerely hope the Bill will be passed and it looks like it will be. It will expand the national newborn blood spot screening programme, which has the potential to allow for life-saving treatment for at least one child per week. I listened to the Minister's argument regarding the delay of 12 months and I understand the rationale behind it . However, I am mindful of the fact that 50 children will not benefit in the interim. I acknowledge that he will make every effort to move on this sooner if he can.

It should be noted that new conditions can be screened from the same heel blood spot that is currently used. We learned from Mr. Martin that Italy has increased its testing to cover 40 conditions, an increase from four previously. I understand the Italian authorities are willing to share the technology and anything they have learned with their European colleagues. It is one of the great benefits of being a member of the European Union that we have this type of co-operation between member states. Legislation was enacted to make the screening a mandatory national public service to ensure the viability and longevity of the newborn screening service in Italy.Every Italian newborn receives a free and compulsory test providing early diagnosis at birth for almost 40 rare metabolic hereditary diseases. My colleague, Senator Bacik, referred to that. That is another debate that we must have with respect to matters such as screening and vaccines that have been discussed today because the protection of life is important.

The Bill before us places the national screening advisory committee on a statutory footing. I agree with that provision, which was one of the many recommendations of the Scally report on our national screening programmes. The Bill also places the screening programme on a statutory footing. It will 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, rather than reactive in response to new conditions.

The cost of the heel prick test in Ireland is approximately €50 per child. This is a pittance in the overall scale of the national health budget, yet life-saving for the children who receive diagnoses. Any additional costs arising from expanding the programme would be far exceeded by the benefits. I am sure there is no need to convince any Senator 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 heard today that we are moving in that direction and I thank the Minister for that.

Earlier this year, Mr. Phillip Watt, chair of the rare disease task force, stated that while an average of 20 diseases are screened for at birth among babies in Europe, Irish hospitals only screen for eight conditions. The Minister is telling us that the number is now increasing. This contrasts sharply with some states in the USA 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 is not. That is one baby every eight days. I understand the Minister's predecessors, the Minister, Deputy Harris, and the Minister of State, Mr. Finian McGrath, were very supportive of this legislative proposal and that the then Minister gave a commitment in the House in July 2019 to send his officials to Italy to meet their Italian counterparts . I am not sure if that meeting has taken place.