Last week I raised the issue of patients with paroxysmal nocturnal haemoglobinuria, PNH, a life-threatening blood disease, being denied access to Soliris, a life-saving medicine. Some 35% of people with the condition die within five years, which is the life expectancy without treatment. It is a serious situation. In 2010, ten patients were put on treatment at St James's Hospital by the then Government and HSE. Since then, new patients have been denied the therapy and treatment used in the United Kingdom and across Europe. I have met some of those involved, having spoken to Ms Mary Gorman and Mr. John Duggan. Mary Gorman's letter and testimony is heartrending. I contrast it with the case of a young woman who had to emigrate to get treatment. Mary Gorman talks about slowly dying with this disease and how her daily life involves another dreadful night of disturbed sleep and distress and the daily onslaught on her body. It is a two-year battle she has had with the authorities and has written to the Taoiseach over the past 12 months. She had a job and was energetic but she now has no job. She says she is slowly but surely dying without treatment. She hopes the Government, the Minister for Health and the people responsible in the HSE are fully aware of the distress and utter devastation they are causing.

We can contrast that with a young woman to whom I have spoken. At a young age, in her 30s, she developed this particular condition and was diagnosed with it. She was denied treatment St. James's Hospital but she was not told why. She was given no timeframe for when she might expect to get medication. In 2013, the young woman went to another EU country and before she was resident in the country she was able to talk to the haematologist, who reassured her she would get the treatment. Within five days of going to the country, she was under treatment. The contrast in her life is as follows. She says that she is now very fortunate that she can work in an extremely high pressure environment, with very long working hours, without the worry of treatment and PNH over her. Poignantly, she says that she will never be in a position to return to Ireland so long as Soliris is unavailable to her. She is permanently in exile.

Then we have the case of Maeve McGill, Ardara, County Donegal. She is a 15-year-old who was denied treatment. Her family has been farming in the area since the 1800s and are now planning to sell the small firm to go to the United Kingdom so that she can get access to treatment. Do the Taoiseach and the Government have any shame that a situation like this is carrying on for the past two years when the drug has been available in United Kingdom? It is an orphan drug with a limited market and from what I can read, the Taoiseach also knows there has been little proper engagement by the authorities in terms of offers. Mary Gorman was denied all freedom of information requests in terms of times, venues and meetings between the company and the HSE. Why? What is the big secret? It is a disgrace and I ask the Taoiseach to urgently intervene to make sure patients get access to the drug therapy.

This is a very personal issue and I take fully on board what the Deputy has said in respect of the person involved and the letters written. I am dealing with a case that came to my attention where someone has gone to the United States for a particular form of treatment. I do not accept that the Minister, the HSE or the Government are not aware of the importance or sensitivity of this. The cost is €400,000 per annum but we cannot put a price on a life. The HSE has been engaged with Alexion Pharmaceuticals, the company that produces the drug here. I am disappointed that it has not been able to reach a conclusion that the company will make the drug available at a cheaper cost and a lower price for people who need it in Ireland. That is regrettable and I am sorry that this is causing distress to this patient and others, who are small in number but very sensitive and must put up with this scale of challenge. It is important to stress that the engagement of the HSE with Alexion Pharmaceuticals is designed to bring about a situation where the drug can be available at a more reasonable cost and therefore be able to treat more people. Deputy Martin is well aware of the scale of the challenge facing the health services.

The HSE will continue to engage with a pharmaceutical company, urging it to provide the drug at a more reasonable cost. I do not know the country to which the Deputy referred or whether the same drug is required. This is an indication of why we must move towards universal health insurance, where access to medicine and the attention required can be available to people as they need it.

We gave them medicine.

The Deputy may shake his head but he went through this himself with sensitive cases. I understand what he is pointing out about the person involved and he can be as righteously indignant as he wants from the point of view of his party-----

These are real people.

------but this is about an engagement between the HSE, the Department of Health and Alexion Pharmaceuticals, which is charging €400,000 per year for the drug. Some ten people are on a pilot scheme and I wish the company would be more reasonable in its response to an engagement when it knows there are small numbers of people with this challenging condition. We will continue to engage directly with the company. I do not know the number of meetings that took place but I can find out for Deputy Martin.

The Taoiseach knows more than he is saying. Some nine months ago, he wrote to Mary Gorman enclosing an e-mail from Laverne McGuinness of the HSE. The offer nine months ago was €125,000, a 65% discount on the current price. There has been nothing since. That offer is not realistic. We are playing hardball with people's lives and there is a UK precedent. The National Institute for Health and Care Excellence, NICE, is not known for being particularly generous in approving new drug therapies. Over 200 patients in the UK are receiving this. I cannot name the country because I must protect the identity of the person who spoke to me. That is understandable but it is an EU country similar to our own.

This matter has nothing to do with universal health insurance but is about willpower and the desire to get to the bottom of something and get it sorted. In 2010, ten patients were in the clinician-led high-tech drug programme in St. James's Hospital, which is led by Dr. Paul Brown, and it was identified as the national centre to deal with this. In the agreement, which I have read, it was specified that it should not be administered under the community drug pharmacy scheme. There is a long history in the country of providing access to high-tech drug therapies, particularly those that are new and emerging pioneering drugs where they can significantly improve quality of life and allow people to live a normal life.

The Taoiseach said in his response that no one can put a price on life. The Taoiseach has done so. I have spoken to Mary Gorman this morning and she is in deep distress due to her medical condition.

Time is running out. Last week I spoke to John Duggan, a young married man. Does that 15 year old girl and her family have to uproot themselves from County Donegal to go to the United Kingdom where they will get it? Five days after leaving the country the woman referred to received access to it under the public system.

I want to see Mary Gorman, John Duggan and the others involved being treated with this drug. The position is that Alexion Pharmaceuticals is charging €400,000 per annum for it. The engagement is aimed at seeing whether that price can be reduced. The Deputy previously made a point about the e-mail. We have invested €10 million to enable a number of people to be put on a programme where one can plot the progress and benefits of treatment with the drug for this category. I am disappointed that Alexion Pharmaceuticals has not reached a decision that would allow for the treatment of these patients more quickly and at a more reasonable cost. We will continue to engage and, if the Deputy gives me the telephone number of the good lady involved, I will call her myself.

Why do we not sort it out now in this Chamber? The Taoiseach is abdicating responsibility.

The party opposite had 14 years in which to sort out a lot of things.

The matter can be dealt with outside the Chamber.