Helen McEntee (Meath East, Fine Gael) | Oireachtas source

I thank the Ceann Comhairle for accepting this issue and I thank the Minister for coming into the Chamber to take it.

I acknowledge the presence of Mr. John Duggan, his wife, Aileen, and his brother, Stephen, who are in the Gallery. John is a suffer of paroxysmal nocturnal haemoglobinuria, PNH, the disorder that I am about to outline. I want to acknowledge they are here and that they have gone through a lot to get here.

PNH is an extremely sensitive and tough issue. I feel helpless in this respect as I do not have a medical background and while I am doing my job as a Deputy, we are talking about a life-threatening illness and a young man's life. PNH is an extremely rare and debilitating blood disorder. It is essentially characterised by the breakdown of red blood cells. Mr. John Duggan who is from Bellewstown in County Meath was diagnosed with this rare blood disorder in 2010. Since his diagnosis he, his wife, Aileen, and their family have probably been terrified every day and every night that John will have a blood clot, kidney failure, a heart attack or God knows what else. He is currently receiving blood transfusions every six weeks. I do not know how he does it but he has managed and continues to manage to work since his diagnosis in 2010. That is no way for somebody to live, especially when a treatment is available, has been diagnosed and is known to his doctors and himself.

The drug to which I am referring is Soliris. It is one of the most expensive drugs in the world. It costs more than €400,000 a year. While I acknowledge that is great deal of money, we are talking about a man's life. I could perhaps acknowledge what has happened in this respect if we were talking about 400 or 500 people, but I am taking about two people, John being one of them. The Minister might clarify if there are many more people who are in need of this drug.

I understand that in 2008 the HSE entered into an interim agreement with Alexion Pharmaceuticals, the company that makes this drug, and St. James's Hospital to treat four people and after two years they decided to continue this treatment but also to include a further six people. At present ten people who are sufferers of PNH are availing of the drug, yet there are two people who are sufferers who cannot avail of it. That is extremely unfair and unethical.

There are three components involved. One is the Minister's Department and the HSE, which essentially work together. Another is the National Centre for Pharmacoeconomics, NCP, which essentially decides what drugs are or are not accepted. Another is Alexion Pharmaceuticals, the company that makes this drug. The Minister made his view on this known last week and I thank him for his comments in the Seanad, and I understand the job he has to do. The NCP has made its views well known by the fact that it will not accept Soliris into the community drugs schemes because it says it is too expensive. Alexion Pharmaceuticals has made its views very clear by the fact that up to now it has not been willing to engage and to lower the price of the drug, which seems to be the main problem. We need these three components to come and work together to find a solution now, not in six or ten months time. For the company and the HSE, an issue that might continue for weeks might not seem to be a long time, but for John and his wife this is a lifetime. I am aware that in the last two days Alexion Pharmaceuticals has re-engaged with the HSE and other relevant bodies. That is good but while they are talking about it and I am talking about this issue now, John and Aileen will still go home tonight not knowing exactly what is happening or whether he will be able to avail of this drug.

I urge the Minister to help further facilitate these meetings and to try to find a solution, however it may be found, because we are talking about a young man's life.

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