Alan Kelly (Tipperary, Labour) | Oireachtas source

The Minister is aware of my views on this issue. I have spoken with him and raised it numerous different ways with the HSE and with his office. I spoke about orphan drugs at a committee. Last Friday was, for personal reasons, probably one of the angriest days of my life in politics. I was quite upset. A neighbour of mine, Marion Kelly, passed away. She was one of the two people who Deputy Brassil spoke about. Marion had been in my office numerous times. I knew her. She was an absolute lady. My point is that she was not given the best chance. We are not necessarily saying that if they were on this drug continuously, Marion or possibly the other lady up in Donegal would not have passed away, but that the body politic and the health system are letting these people down. These two people have been let down.

Marion is a neighbour of mine, originally from Puckaun, who lived in Nenagh. She was an absolute lady, loved by her locality. The people of the locality feel that she did not get the best chance to continue, leaving her daughter, her grandchildren and her family behind. She died quite suddenly. No one can tell me that it is fair for somebody to be on Respreeza for 11 years and then, through the politics of health - it is political, whatever side one is on, whether the Department of Health, the HSE or the drug company - for the hope that these 21 people have been given, with 60 more people in total affected by alpha-1 antitrypsin deficiency, to then be taken away. Suddenly, after Marion passed away, the HSE issued a statement at the weekend that it will administer the drug for a period of time. There is no alternative. Marion used to be in hospital seven or eight times a year. That went down to once or twice a year. The health benefits are obvious. We are talking about €84,000 a year. She put up a petition on Facebook, fighting for her life, asking people to support her. I supported her as much as I could.

The ultimate issue here is that the health system and health politics let her down. Her legacy needs to mean something. I know that from her family. We need to intervene for all other alpha-1 antitrypsin deficiency patients and those others coming down the line. These costs are not exorbitant. I do not want a situation where this will continue. We cannot say that there is causation and that these two ladies passed away because of the five or six weeks they were off the drugs. The facts are that they were able to survive for 11 years using this drug and that both passed away in a very short window of time. Please bear that in mind.

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