IRISH MEP BILLY Kelleher is pushing for expanded testing of rare conditions in newborns, to bring Ireland in line with our EU counterparts. 

Kelleher, a Fianna Fáil member who sits in the Renew grouping in the European Parliament, told journalists in Strasbourg this week that Ireland is far behind some of our European neighbours when it comes to early diagnosis of rare conditions. 

Kelleher, who is a member of the European Parliament’s committee on public health, said the committee is currently actively trying to push for greater use of the neonatal heel-prick test across the EU. 

In Ireland, the heel prick test currently involves testing newborns for 11 rare but serious conditions by taking a few drops of blood from their heel a few days after they are born.

It was recently expanded to test for Spinal Muscular Atrophy (SMA), a condition that can be fatal in early childhood, meaning early intervention is critical.

By comparison to Ireland’s 11 tests, Italy tests for over 40 conditions, while Austria and Portugal test for over 30 each. 

Kelleher made the point that expanding testing is of benefit to the individual in terms of earlier diagnosis, but also to the public at large by allowing for more confident future health planning. 

“I would certainly like to see it, that there is consistency across Europe,” he said. 

“That where you’re born doesn’t decide whether you are diagnosed with a rare disease or not.”

He continued: “I’d like to see it drawn up in such a way that all European countries would adopt it.

“I believe there’s great merit for a number of reasons, both in early diagnosis, but also in the sense that it builds up an awful lot of data, and with the capacities of AI, for example…that would then allow medical services or health services across Europe plan into the future in terms of what would be needed for a population if they can identify rare diseases well in advance.

“So I wish that the member states would really buy into this. I know there’s a lot of good will in the Commission on this issue, and certainly by the previous health commissioner, but we do need Member States to buy into this.

Jesy Nelson Alamy Alamy

A spotlight was cast on heel prick testing earlier this year after Little Mix singer Jesy Nelson began campaigning for increased testing, after she revealed that her twin babies are unlikely to ever be able to walk after being diagnosed with a rare genetic condition.

It was after her campaigning around SMA that Ireland expanded the heel-prick test to include the condition.

Back in April, Social Democrats TD and health spokesperson Pádraig Rice also called for the heel-prick test to be expanded to screen for more conditions.