Feargal Quinn (Independent) | Oireachtas source

It is hard to get a word in. Something very serious has occurred. The Irish Lung Fibrosis Association is concerned at a decision taken by the National Centre for Pharmacoeconomics, NCPE, not to make Pirfenidone available to patients. I have been a patron of the association for some time. Lung fibrosis is a very serious disease with no cure but Pirfenidone enables people to stay alive. The issue is not dissimilar to what happened with cystic fibrosis sufferers earlier this year when a decision was made not to spend money on a drug. A campaign led to the Minister reversing his decision and made an exception for cystic fibrosis sufferers even though the drug is costly. The Irish Lung Fibrosis Association faces the same dilemma and is concerned. Not many sufferers are involved but the drug will keep them alive. Its benefits were only discovered in recent times.

It has been approved by the European Medicines Agency and the National Institute for Health and Clinical Accidents in Britain but we have not allowed it to be distributed to patients. It is worthy of the same attention given to the drug for cystic fibrosis earlier in the year. I will write to the Leader on the issue and also to the Minister for Health. Attention needs to be drawn to the issue and it should be given the necessary priority to save lives.