The parents of a six-year-old Kilkenny youngster battling to access the life-saving drug Spinraza are devastated that a decision due this week on whether or not the drug could be made available has been delayed.
Isaac Brennan lives with Spinal Muscular Atrophy - a degenerative genetic condition which forces him to use a wheelchair. Because of this condition Isaac also has a shortened life expectancy. Spinraza has been proven to have a positive impact on people with this condition but currently is unavailable in Ireland.
Minister for Health, Simon Harris informed Philip and Carol Brennan this that a decision which was expected to be reached on Tuesday was not available.
"While there was an expectation that a decision would be reached on the 14th of May, this will now not be the case.
We have been advised that the assessment is receiving priority attention and we will be provided with a further update as soon as one becomes available," said the Minister.
Isaac's parents, along with a number of local TD's have been campaigning for access to the drug.
"This response is unacceptable at this stage. We have been waiting for so long on a decision to be made. Our children our getting weaker every day and we need to see results on a positive decision made on the reimbursement of Spinraza in Ireland sooner rather than later," said Carol.
Spinraza was made available on the NHS in the UK this week for sufferers of SMA.
"Ireland need to follow suit immediately. There is now only two countries to approve in the EU, Ireland and Estonia.
What is Ireland always the last to make a decision like this?? It is so frustrating for families in Ireland and we need answers imminently," Isaac's parents told The Kilkenny People.