Micheál Martin (Cork South Central, Fianna Fail) | Oireachtas source

The bottom line is that two people have died. The Taoiseach can talk about systems all he likes, but more people will die if the issue is not resolved. The system described by him is not working; it is failing. Professor McElvaney has been the lead clinician in this area for well over a decade. He has worked on the Alpha-1 gene and Alpha-1 deficiency and his expertise has been ignored. In respect of the Helsinki Declaration, about which the Taoiseach spoke, the company was wrong, but, equally, the Government and the HSE were wrong because the declaration is very clear. It states that "in advance of a clinical trial, sponsors, researchers and host country governments should make provisions for post-trial access for all participants who still need an intervention identified as beneficial in the trial". Our side - the Government - is not stepping up to the plate. It can act in a hands-off way all it likes, but that is not going to work. In respect of the insecurity the people in question face when they wait while nothing is happening, what is happening is inhumane. The Minister asked the HSE, but it has ignored him. There have been no meetings and no engagement. The company acknowledges fault and spoke to Niamh Kelly, the sister of Marion Kelly. It is willing and anxious to engage. All we are talking about are 21 patients on the island, but we go on about being hands-off and how it is this and that system. For God's sake, let us bring some humanity back to the health service.

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