Thomas Byrne (Fianna Fail) | Oireachtas source

The gentleman himself is here today, in the first seat beside the door in the front row of the Visitors' Gallery. He is a young man from Bellewstown in County Meath and I believe he deserves the chance of a normal life and, indeed, the chance of life. John was diagnosed with paroxysmal nocturnal haemoglobinuria, PHN, in 2010. It is an extremely rare blood disorder which is characterised by the breakdown of red blood cells, as I am sure the Minister will know only too well being a doctor himself. I understand about a third of patients with PHN die within five years. In John's case, PHN is resulting in him having blood transfusions every six weeks or so, he is lethargic and he greatly fears blood clots. He describes his prognosis in his own words:

I am getting worse and worse. There is every chance I will have a heart attack or kidney failure. A blood clot is definitely coming and this is not a time for messing around.

There is a treatment available, as the Minister will know, for PHN. It is an expensive treatment - I acknowledge it is expensive - called Soliris. The chemical name is eculizumab. It has been shown to normalise life expectancy for those receiving it. As I understand it, and this is part of the crux of the matter, ten patients in Ireland have already been prescribed Soliris, funded by the HSE, and I understand from contacts Mr. Duggan has had with some of them that it is working very well. Mr. Duggan and one other patient of whom I am aware - I am sure it is a person of whom Senator Whelan is aware - have been refused it.

This strikes me as fundamentally wrong, unethical and unfair. How can this State arbitrarily decide that Mr. Duggan is different from those already being given the medicine by the State? How are these decisions made?

May I quote from Mr. Duggan's GP, Dr. Oliver Lynn?