Tuesday, 12 February 2019
An tOrd Gnó - Order of Business
I am informed by the parents of children with muscle-wasting conditions such as spinal muscular atrophy that the HSE leadership management team will meet on 14 February and, it is hoped, come to a final decision regarding the orphan drug Spinraza. It is a very difficult situation for the parents concerned. As the Taoiseach is aware, approximately 20 European countries have approved the drug. In 2016, the US Food and Drug Administration approved it for young children with this very rare condition. Many parents have pointed out the expense incurred by intensive care units and that children with illnesses such as cancer are not refused chemotherapy. Some 25 children in this country would benefit from the medication. The negotiations are ongoing.
Every week is precious to those children in terms of how this drug can improve their capacity to deal with this condition. I would appreciate it if the Taoiseach could indicate when a decision will be made on this.