Ms Geraldine Kelly:

A question was asked about quality of life. Being faced continuously with a deadline on a drug that is allowing a person to live - what we around the table appreciate as normal daily living - is heartbreaking for these patients. It affects their family lives and it affects them financially. There is the continuous threat of ending up in hospital with a chest infection or the possibility of a lung transplant. It is not something any of us want to face. The threat over the alpha-1 patients is obvious, as it is with other patients suffering from rare diseases who require orphan drugs to help them maintain their lives.

The Health Service Executive or the National Centre for Pharmacoeconomics, NCPE, are looking at the effectiveness of a drug and they are concentrating on the cost effectiveness of a drug than whether it is effective for patients. That has already been proven;12 countries in Europe have approved this and are readily handing it out to patients, and we have already proven that it works in Ireland for 21 patients. We have got 40 more and probably ten on top of that waiting. It is a given that this needs to change.