I thank Deputy Butterly. I thank Dignity4Patients and thank the men - overwhelmingly it is men - who collaborated with us and worked with us on this process. I thank Lorcan Staines who, I think the Deputy will see from the report, has adopted a most empathetic approach that is different from any language that has been used about this and about these men in the past. I thank him for his kindness and the way in which he has embraced that. Dignity4Patients was with us as a partner and the men were with us as partners at every stage. That will be the case the next time. Of course it is for Government to sign off on the terms of reference and that is always the case but we will take the same collaborative approach to the next phase as we have this phase.

Sentiment score: 0.32

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.

Sentiment score: 0.21