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

I want to raise a situation that is essentially a matter of life and death for a number of people in this country. In particular, I have been approached by Mr. John Duggan from Meath and people representing Ms Mary Gorman from Ballinakill, both of whom have been denied Soliris, a drug therapy which can have a dramatic impact on patients with a rare blood disorder.

The condition, that affects quite a small number of people globally, is paroxysmal nocturnal haemoglobinuria, PNH. It is a rare acquired blood disorder which is severely life-threatening. Some 35% of patients will die within five years of diagnosis and 70% of patients will end up with end-stage renal failure. It is a very serious issue for those concerned.

The clinicians involved, in particular, Dr. Philip Murphy, consultant haematologists in Beaumont, has written to Mr. Duggan. He has consulted both Professor Peter Hillmen, the leading United Kingdom expert, and Professor Paul Browne, who state that this drug is essential for such patients and John should be in treatment with this drug therapy, Soliris.

In 2010, it was decided that ten patients with this condition would get the drug and ten patients, since 2010, are in treatment under the drug therapy, but over the past two years new patients coming onto the scene are being denied the drug by the authorities. As Dr. Philip Murphy stated in his letter to John, there is a strong moral, ethical argument that the HSE should agree to fund the Soliris therapy.

Ms Mary Gorman had to go on "Today with Seán O'Rourke" to highlight her case because she has been left for two years with no treatment to control her disease even though medical experts want her to be treated appropriately. She has had to give up her job. She has been subject to fire-fighting interventions, such as frequent blood transfusions. She is now severely restricted.

The National Institute for Health and Care Excellence, known as NICE, in the United Kingdom has issued guidance on this drug, stating that its impact is a step-change in the treatment of this condition, that it offers patients the possibility of avoiding end-stage renal failure, dialysis and kidney transplantation as well as other organ damage, and that the analysis from all sides indicates that the substantial quality-of-life gains made are of a magnitude rarely seen for any new drug treatment.

By any yardstick, it is unacceptable that these individuals have been left without access to this drug. I acknowledge it is a very expensive drug, but it is not the Taoiseach's role and the Government's role to play God with people's lives. I say that sincerely because if these cases were not raised in the public domain, we would not be having this debate.

I put it to the Taoiseach that the defence of the Minister last evening, that it is a matter for others and not the Minister, is not acceptable. Ten patients are already on this drug. The authorities have approved it for ten patients, but a decision has been made not to give it to Ms Gorman and Mr. Duggan, and I would like to know why. How can we in this society state some citizens are more equal than others?

Last night the Minister stated that the €1 million involved could do a lot of other things. The bottom line is it can do a lot of other things but in this instance, it can save two lives and dramatically transform their quality of life. I ask the Taoiseach to cut through the bureaucracy and get this issue sorted, and facilitate access to this life-saving drug therapy for those concerned, who need it and whose clinicians state it is essential that they get it.

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