Pádraig O'Sullivan (Cork North Central, Fianna Fail) | Oireachtas source

I raise again the issue of rare diseases. While I welcome much of the progress we have achieved in the past two years in government, particularly with the number of drugs to which people have access - more than 80 at this stage, which is great progress - I still feel somewhat disappointed that next year's budget did not contain a stand-alone budget for new drugs for rare diseases. I know the savings from the main drugs budget will be diverted towards this but I have to express that initial disappointment. The programme for Government asks that we establish a national genetics and genomics medicine network and states that we would support the medical genetics service. There is much to be lauded and much progress made but, at the same time, we are still behind the curve in many situations and there is an awful lot more work to do regarding our overall access to drugs. At the moment, we are at risk of losing our European reference networks, ERNs, as well. I would appreciate if the Taoiseach could comment on this matter.

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