HSE Guarantee No Delay In Rollout Of Spinraza Drug After Lengthy Campaign

The Minister for Health, Wicklow TD, Simon Harris says he has been assured that there will be no delay in accessing the drug Spinraza, following a lengthy campaign by parents of those affected.

The HSE’s leadership team has approved access to the drug for children with type 1, 2 and 3 Spinal Muscular Atrophy on an exceptional and individualised basis.

Earlier this year, the HSE said the drug would cost about €600,000 in the first year to treat each of the 25 Irish children with the disease and €380,000 a year thereafter,.

Spinraza is now approved in 26 countries around Europe with just Estonia rejecting it.