Mr. Richard Lodge:

Let me pick up on another question. We were asked what drugs we were aware of coming through the system. Ms Kelly has just touched on one of the problems in treating rare diseases, namely, that Ireland is small and that as a result the numbers are very small. Until recently we did not have a clinical trial site, although we do now. Our very real concern is that unless we can change the current system to make it easier for the drug companies to operate trials in Ireland and have their drugs passed and licensed and because we are dealing with such small numbers of orphan drugs and rare diseases, we may get to a stage at which a drug company may simply not bother with Ireland or may not be inclined to invest in research here to the same level. Many of the drugs trials about which we are talking simply do not happen Ireland. There may be a raft of reasons behind this.

The other point the Vice Chairman made was about the cost of caring for patients. A study in 2014 put the cost of caring 24/7 for a non-ambulatory patient at around $130,000 per year. The question was how confident were we that they had taken all costs into account. We have never been told that Translarna failed on a cost basis. However, we have no idea what costs were included. We would like to think and have to assume all costs were included. However, because there are such gaps in the communication process, we can only assume that they were.