Rose Conway Walsh (Sinn Fein) | Oireachtas source

I thank Senator Wilson for sharing time. He knows how passionate I am about the subject of Translarna and the boys who are waiting for it. I thank the Minister of State for coming to the House.

The Minister, Deputy Harris, is acutely aware of this subject and also of what needs to be done. I welcome the fact PTC Therapeutics and the HSE have come to an agreement and that the legal case is now taken off the table and will be discontinued in the High Court. That presents us with a small window of opportunity in which a revised application can be submitted. What is key is that we do not start the process all over again, that the information and clinical evidence that has already been submitted is taken into account and that we do not have to go through the two to three year process that applied originally. What needs to be outlined at this stage is the exact process and the timeline for that. In fairness, that needs to be given to PTC Therapeutics and to be made transparent. I ask the Minister of State for that information.

In terms of the price negotiation, the Minister, Deputy Harris, will also know the HSE failed to negotiate the price on the original application. That is why it was bewildering to get one's head around how a cost-benefit analysis could be done without having the proper negotiated price. That needs to be done at an early stage.

I know this can be settled in a matter of weeks or a couple of months. By the time we come back in September, these boys should be able to get the Translarna drug and not have to wait any longer. As Senator Wilson outlined, the impact of them not having it, in terms of their walking being discontinued, is not acceptable. We have this window of opportunity but the Minister needs to intervene because the HSE will not do it in a timely manner unless the Minister gets involved. I ask him to ensure the meeting between PTC and the HSE is facilitated as quickly as possible.