Enda Kenny (Mayo, Fine Gael) | Oireachtas source

The Deputy's point is best addressed by people who have CF and have to contend with it. The situation has improved for a great number of CF sufferers compared to years ago. After many years of tribulation, there have been formal openings of a number of CF units around the country. From talking to patients who have the use of them, I know provisions such as the recirculation of clean air mean so much to their lives. As the Deputy pointed out, it used to be that the Government would accept or reject the prices put forward by pharmaceutical companies. Now, the decision is based on a clinical assessment of the effective outcome of treating a patient with a particular drug. This is based on the assessment of the improved quality of life for the patient, depending on the nature of the treatment they receive. This also applies to other drugs for other ailments. The Government, the Department of Health, the Minister and the HSE are committed to continually improving the situation for CF sufferers and this is evident in the programme for Government. The evidence is there before our eyes in better facilities.

A process is taking place arising from the clinical assessment of the improved quality of life for CF sufferers who take Orkambi. This means meetings between the HSE, the pharmaceutical company and the clinicians involved. I hope an outcome can be arrived at, as has happened in a number of other cases in which the original price set by pharmaceutical companies was reduced to a level where the clinical assessment was that it was worth the cost in terms of the improved quality of life it could give. These are clinical assessments, as the Deputy is aware. I will have the Minister for Health give me an update on the progress on those meetings on appeal to see if Orkambi can be made available at a price that would justify a clinical assessment of it improving the quality of life for people. It is a very sensitive and important question.

See this speech in context