A campaign group for people with a rare genetic muscular condition has called for all newborn babies to be tested for the disease.
Spinal Muscular Atrophy (SMA) affects around six babies in Ireland each year and the group wants screening for the condition to be added to the range of disorders that are detected in the heel prick test given to newborns.
SMA is a rare, genetic neuromuscular condition causing progressive muscle wasting.
At present, it is not included in the heel prick screening for newborn infants, which tests for nine conditions.
Spinal Muscular Atrophy Ireland's Director Jonathan O’Grady said it is crucial that SMA is diagnosed early as now there are treatments available for the condition.
Speaking on RTÉ’s Morning Ireland, he said that prior to the treatments being available it "really didn’t make a difference. It was an academic exercise".
He said SMA is included in the heel prick test in 12 other European countries and is also being launched in a pilot program in a further eight countries.
He said Ireland should be commended as we have introduced some really cutting-edge medicine for the treatment of SMA.
"However, this medicine is time critical. The longer it takes to give it to the child, the more motor neurons die."
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"Therefore it is crucial", he said.
Mr O'Grady said that the national Screening Advisory Committee is to be commended "for the great work that they're doing, but it must be remembered that their mandate is extremely wide. They deal not just with newborn screening considerations, but also with all the other genetic conditions that you can imagine".
He said that they need to be very methodical and very careful in what they do.
There was a call for conditions to be put forward that could be added to the heel prick test and SMA was suggested.
However, Mr O’Grady said that the process takes a long time.
He said: "We know from looking across Europe that it is a near on certainty that they will include it, but it could take three, four, five years.
"Each year that’s six babies that are born with SMA and some of those being sent home presymptomatic without a treatment plan.
Mr O’Grady added: "We're saying introduce a pilot programme today. This will circumvent the delay in the HIQA assessment, and it will enable valuable data and process improvements to be refined in time for HIQA’s decision."
