The HSE Leadership team has today approved access to the drug Nusinersen (Spinraza) for children with Spinal Muscular Atrophy (SMA) Types I, II and III on “an exceptional and individualised basis” up to the age of eighteen years.
Sinn Féin Spokesperson on Disability Rights Deputy Caoimhghín Ó Caoláin, who has campaigned in conjunction with families all over the country for the provision of this vital drug, has welcomed today’s decision to approve Spinraza but has criticised the HSE for making it reimbursable only up to eighteen years of age.
Deputy Ó Caoláin said;
“It is without question a most important day for all the 25 children and their families who will now hopefully benefit directly from this decision. We have finally gotten to a point of approval for reimbursement after many long and hard days of protesting, campaigning and the unavoidable pain and tears.
“I want to say a sincere well done and congratulations to all the campaigning families for their tenacity and fighting spirit over such a long period of time.
“I am also deeply conscious of the adult SMA population in Ireland who have been left outside this decision and who will be feeling very disappointed and isolated. What also will happen when approved children turn eighteen?
“It is my belief that negotiations must continue between the Pharmaceutical Manufacturers of Spinraza, Biogen, and the HSE to progress approval for all SMA sufferers and without exception and I implore all parties to re-engage and to conclude quickly a comprehensive agreement to make Spinraza accessible for all with SMA, irrespective of age.
“Spinraza must be provided for all types of Spinal Muscular Atrophy and for all of life.”