Imagine being the father of two boys who have Friedreich's ataxia and one of them passing away. I know the Tánaiste is familiar with the case of Craig Coady. I normally do not personalise stories in here but he spoke about this quite openly on Red FM in Cork on Tuesday. He went home that evening and his son asked him if they had got the drug. Imagine telling your son that unfortunately the answer was "Not yet", only for him to turn around and say "Dad, it's okay if we don't get the drug because at least if I die I'll meet Rory". It is extremely upsetting for many people and, as I said, I do not normally personalise things, but this has been referred to a rare diseases technology review committee which is due to meet in the next few weeks. I am pleading for that to be done as expeditiously as possible. I am not asking anybody to comment on the process itself as I know we have to respect it, but is it possible that the review committee can be brought forward and convened as quickly as possible to see this through one way or another because of the mental trauma, anguish and emotion? Many people travelled up on Tuesday. One girl made a ten-hour round trip from Bantry in hope and expectation. Unfortunately, we have created these campaigns because the system is broken. The Tánaiste said that himself back in 2017. It is going to be Groundhog Day. I have hope that with the review the Minister has commenced this will become a relic of the past. I sincerely hope so. In the here and now I am begging for that review committee to be brought forward as urgently as possible.

I thank the Deputy for his continued advocacy for all people with rare diseases. We are trying to change the system specifically to get better access for rare diseases and we are partnering with other countries to try to do that as quickly as possible.

It is wrong that we are negotiating against each other as member states, in some cases, with pharmaceutical companies. We have not reached the best solution on a European basis. There is work there to be done and as president of the Council of the European Union on health I will be taking this forward on that basis. Also, within Ireland we are trying to improve the system. Nevertheless, the process is, as the Deputy knows, science-led and because it was not approved by the drugs group it has to go to this rare diseases technical review group. The difference between those groups is the first group is a standing group. It exists every month, whether it is oncology drugs or rare disease drugs, and this other one is an extra opportunity where, if the first group does not approve it based on scientific grounds, there is an extra opportunity for those clinicians who are actively working with patients with Friedreich’s ataxia or the relevant rare disease to have their say, to make their case and give the best explanation of how they think it might work. It is about the HSE giving every opportunity to make the case for a particular drug, particularly where the science is more mixed than is the case for other drugs. I commit to the Deputy – I have already asked that it be brought forward as quickly as possible - but I recognise that we are dependent on individual clinicians who may be here or may be there who are not routinely on this and I would rather have the right people in the room to give this the best opportunity than to do it a week earlier and have missed the opportunity to have the correct people. We really are trying to make it happen as quickly as possible.