Ms Vicky McGrath:

Perhaps I can also jump in there. A report was published yesterday, which is conducted on an annual basis, on access to medicines. This is hot of the presses. Of the 47 orphan medicines that were approved by the European Medicines Agency, EMA, in the four years 2016 to 2019, eight of them are available in Ireland today. They are, therefore, on the reimbursement list in Ireland today. Some 96% of them are available in Germany, 85% are available in Denmark and 72% in England in the UK. In Scotland, a similar country to our own, the figure is 47%.

Our system is hindering access. I know that we talk an awful lot about reimbursements of medicines and pricing and so on. The system fundamentally does not work for orphan medicines, however. We are being left behind. Our patients are the last ones to receive these therapies in many cases. I am aware of this new retinal drug and gene therapy that is available. Children who have been diagnosed with this condition in the past year, or who will be diagnosed in the next year or two, may not have access to something that is potentially curative, and will enable them to attend school like any other child and see the blackboard, whiteboard, TV or whatever is used today.

Our system just is not fit for purpose when it comes to orphan medicines. It never has been; it is an ongoing challenge. This is where we, as a country, need far more to look to Europe. We do not have the numbers of people who are required to do all this assessment. We need to piggyback on what is happening in Europe and look at how people are doing it there. We need to be far more critical of our own systems and ask why we are denying people access to therapies that are available in different countries across Europe.