Virgin Media report on the #SpinrazaNOW campaign at Leinster house today.
SMA sufferers travelled from around the country to call on Minister Simon Harris and the HSE to make Spinraza available to all Irish Spinraza sufferers.
Spinraza is currently available and re-imbursed in 19 EU countries including the Benelux-A group that Ireland recently signed up to for drug price negotiation.
It was acknowledged by campaigners that the drug which is described as an orphan drug has a high cost. This is balanced out by it’s effectiveness and the fatal alternative to treatment.