Robbie Gallagher (Fianna Fail) | Oireachtas source

I concur with the comments made by the Leas-Chathaoirleach and the previous speaker.

Today marks the first world newborn screening day. To mark the occasion I wish to draw attention to the delay in adding spinal muscular atrophy to the newborn heel-prick test. Each year in this country six babies are born with the condition, which is known as SMA. The degenerative condition means that most affected children will never walk.Left untreated, 95% of children with the severest form do not live beyond 24 months.

We can be thankful that there have been significant advances in the treatment of spinal muscular atrophy, SMA, with drugs over recent years. Those drugs are eligible for reimbursement, which is something we all can be proud of. There is proof that the earlier a child receives treatment for SMA, the better the outcome will be. Many children born with the disease do not present with symptoms until 12 months after birth. Later diagnosis can result in significant damage being done.

However, as the Leas-Chathaoirleach will know, there is a simple PCR test that can diagnose SMA with near perfect accuracy from a spot of blood. Each year, approximately 60,000 babies are born in this country. Each child receives the heel prick test for a very small number of serious medical conditions. I am told it is possible to add SMA to this list for as little as €5 per individual.

The representative group for people affected by SMA has written to the newborn screening advisory committee to ask that SMA be added to the heel prick test schedule. I understand that submission was accepted but, unfortunately, no progress has been made six months later. This means that children are not being diagnosed at the earliest possible opportunity and that vital time is being lost. As I have said, the drugs are very effective but time is of the essence. Addressing this delay is of vital importance to the families concerned. I respectfully ask that the Leader communicate with the Minister to seek an update on the current position with regard to this matter. I look forward to the response.