Spinraza gets green light: Kilkenny family among those set to benefit as HSE approve drug
The HSE has today approved the use of the new drug Spinraza.
Spinraza, as medication, is used mostly by children with spinal muscular atrophy.
Minister for Health Simon Harris tweeted to acknowledge the campaigning of families for the first ever treatment for children with SMA.
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
Original story
A local family faces an anxious wait today for a decision from the HSE on Spinraza.
Today is the day the HSE leadership team meets to decide if it will approve the drug for Spinal Muscular Atrophy sufferers around the country – including Kilkenny youngster Isaac Brennan.
His family and friends have campaigned tirelessly to get him access to Spinraza – his mother Carol says it could change his life.
Last month the UK approved access to the drug through the NHS and as it stands Ireland and Estonia are the only EU countries where it hasn’t yet been made available.
Updated 2.15pm
