Louise O'Reilly (Dublin Fingal, Sinn Fein) | Oireachtas source

I have some questions and then I will come to Deputy Murphy O'Mahony and Senator Colm Burke. Ms Kelly spoke about deadlines. Could she provide an insight on behalf of the people she is here to represent of the kind of impacts those deadlines have on families and the individuals themselves? It must be horrendous for them. I have met people in my constituency who were affected and the manner in which some of the process is conducted is nothing short of cruel.

If the witnesses were to score the national rare disease plan in terms of strategy could they say it is good? Could they also score it on implementation? I would be interested in seeing if the scores are different. Reference was made to savings and the cost to the taxpayer of a non-ambulatory child versus the cost of the drug. When we questioned the HSE and the NCPE earlier, they were very clear that they took absolutely everything into account in terms of any potential savings. Could the witnesses give us their perspective on whether absolutely every saving is in fact taken into account?

Mr. Lodge spoke about the process and the need for fairness and transparency. If we were to redesign the process we would design a process whereby the people who needed the drugs got the drugs but life is not that simple. In terms of the current process and the constraints under which we are operating, do the witnesses have any suggestions about how that can be improved specifically to inject some fairness and transparency?

My final question is also for Mr. Lodge. He spoke about the drugs group meeting recently and that Translarna was on the agenda but was not discussed. Could he give us his view as to why that happened? I will leave it there. We will take the questions in a batch. I ask the witnesses to respond and we will come back then to the other members who are indicating.