Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation
Dail Éireann — 2026-07-16
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Jennifer Carroll MacNeill (FG), Dún Laoghaire

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.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-07-16/debate/main
Retrieved: 2026-08-27T06:52:17+00:00
Sitting date: 2026-07-16