Adults with a rare degenerative illness say they’re being left to suffer after the HSE excluded them from access to a “miracle drug”.

The HSE recently announced it will fund Spinraza – the only treatment for people with rare muscle-wasting disease spinal muscular atrophy (SMA) – but only for patients under 18.

Today on the Hard Shoulder, Ivan spoke to Jonathan O'Grady, who has SMA type 2. Jonathan spoke about the campaign for access to Spinraza, as well as the adults who are now left in limbo without access.