Michael Healy-Rae (Kerry, Independent) | Oireachtas source

Mr. Paul Cullen, the health correspondent in The Irish Times, wrote today that more than 20 Irish patients with severe lung disease are facing the removal of a life-changing drug within weeks following its rejection by the Health Service Executive on cost efficiency grounds. The patients who have genetic emphysema are due to see their use of Repreeza provided through a compassionate use programme end in two weeks. Most of them have been on the treatment for up to a decade and fear a rapid deterioration if the drug is no longer available. An application to have the treatment, which costs more than €100,000 per patient but is provided free of charge, has been rejected by the HSE drugs group.

I want to compliment the Alpha One Foundation, which runs a HSE-funded screening programme in Beaumont Hospital in Dublin. It has said that the treatment has been life-changing for patients. I compliment people such as Professor McElvaney and others who have been doing great work for the patients who suffer from this most severe of diseases.

I know about this disease first hand, being a very close friend of a patient who has been suffering with it for many years and who relies on this life-saving drug. Some people have another condition, panniculitis, which is combined with the emphysema problem I have highlighted. If this drug is taken from them, they will slowly fade away.

This Government, the Department of Health, and the Minister, who is sitting beside the Minister, Deputy Bruton, should get on to the drugs companies providing this drug. For God's sake, we are not talking about an unimportant issue. We are talking about a drug that will save people's lives. It is saving their lives. It is keeping them alive. If the drug is taken from them, the immediate effect will be that they will lose the power in their legs, they will not be able to breath and will have to fight for every breath. The money for this drug has to be provided but the drugs companies have to be tackled also.

I ask the Minister for Health in particular to go to them, sit down with them and tell them that for God's sake on compassionate grounds they should reduce the cost so the HSE will be able to continue to provide this lifesaving drug. I know people who are at home today and who have already heard Professor McElvaney and others discussing the drug on Radio One this morning. They will also hear it being spoken about here, but what we want to hear from the Minister and the Government is that they will help these people. It is not an huge number of people, but my God their lives are every bit as important as mine or the Minister's any day of the week.

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