18:20 Tuesday, 11 June 2019
The decision from the HSE is positive news for many families around Ireland.
It’s been confirmed that the HSE has approved access for the drug Spinraza for children with Spinal Muscular Atrophy.
Around 25 children in Ireland are currently living with the condition, which causes problems with movement, muscle weakness and also leads to difficulty breathing.
Just over €2.4 billion of the HSE’s budget is spent on drugs and medicines and the HSE says it will work closely with the Department of Health in relation to the funding implications of today’s decision.
Health Minister Simon Harris is among those who have welcomed today’s announcement.
Welcome news today that Spinraza is now approved by the HSE. This is the first ever treatment for children with SMA. I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access
— Simon Harris TD (@SimonHarrisTD) June 11, 2019