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

It is not, as the Minister tried to indicate last night, to do with the efficacy of the drug. There is no issue with the efficacy of the drug according to the leading clinicians in this area around the world. What is happening is that the position has hardened in the past two to three years in the health area, and for innovative drug therapies. The consequence of that is that two citizens of whom I know, and there may be a third or fourth, are being denied drug therapy of which ten other citizens have been availing for the past three years. That is not acceptable on equality grounds. It is a life and death issue. There will be extra costs on the HSE when renal failure, thrombosis or the other side effects of this particular condition occur. Extra costs will also result from the regular blood transfusions that will become more frequent as the condition deteriorates. In one case, a person has had to leave her job because of the failure to enable her to avail of this particular therapy.

This is a funding issue. I mentioned the National Institute for Health and Care Excellence, NICE, in the UK, which is not known to be flaithiúlach in its approval of new drug therapies, but the institute is clear that the drug therapy in question is a step change in treatment for this rare condition and disorder. It is about time the Minister took responsibility and stopped hiding behind other authorities such as the HSE when it is a matter of life and death. The matter is urgent because the longer it goes on, the higher the risks become in terms of something very serious happening to the people concerned.

The reason I raise the issue is because I want to see action arising from today.

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