Tuesday, 11 June 2019
An tOrd Gnó - Order of Business
I want to briefly raise the issue of Spinraza.Many Members of this House have raised the necessity for Spinraza to be provided to children with a very rare genetic disease, spinal muscular atrophy. I am happy to say that today the Health Service Executive, HSE, leadership team has approved the drug. I was quietly confident that it would be approved but I think until it was delivered the families deeply affected by the disease did not believe it would be. I commend the Minister for Health on his fortitude in insisting on, and pushing for, that drug to be provided. There are only 25 children in the country affected by this disease. The drug is very expensive and there was a health technology assessment. We should approach such assessments on an EU basis because with economies of scale we would have more negotiating power with drug companies as a bloc. The way it currently operates is, in my view, unsatisfactory.
It has come to my attention recently that bottle banks which had been on private land in two locations in north Dublin were suddenly taken away and that they are no longer provided in this area of Kilbarrack and that one may be taken away in Killester. It is not on that it should happen without there being an obvious place for people to go with their material for recycling. There should be a national approach and a policy whereby these are provided in locations where they cannot just be taken away overnight. Everyone is talking about the environment now with good reason but with actions such as this we are shooting ourselves in the foot. It is a simple thing where people are in the habit of recycling and it is ridiculous for that opportunity to be taken away from them.