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

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.

See this speech in context