Micheál Martin (Cork South Central, Fianna Fail) | Oireachtas source

The Taoiseach knows that cystic fibrosis is a very serious issue in Ireland. We have the largest cohort of people per capitawho suffer from cystic fibrosis, and all the challenges that presents. We have had some great testimonies from people with cystic fibrosis in terms of how it affects their lives and, in particular, the impact of the latest and very effective medicine, Orkambi, which can have a transformative effect.

I ask the Taoiseach to read an article in the Irish Independent today by Jillian McNulty, who lives with cystic fibrosis. It is heart-rending, brilliantly written and conveys better than anybody else the impact of the illness and the transformative effect of Orkambi. She writes:

CF is a lonely, traumatising, unforgiving, frightening illness yet there's one thing that has made a difference to my life... Orkambi... Before Orkambi I was approximately eight months of the year in hospital, in the last three years I've spent just 12 weeks in hospital. Incredible.

There was an attempt to denigrate the drug, which we saw in leaks from the HSE and others. We now know that Orkambi has received the drug discovery of the year award from the British Pharmacological Society and the French Prix Galien award in 2016 for the most promising rare disease medicine.

The manufacturers of rare disease medicines and orphan drugs, as we call them, are challenging for countries all over the world and we need to change how we deal with cystic fibrosis in this country, something for which I have asked on previous occasions. The bottom line is that the drug has a significant impact on quality of life, the longevity of people living with cystic fibrosis, hospital admissions, lung function and so forth.

There is no doubt about the effectiveness of the drug. Agreement has been reached in Germany, Austria and the United States so that people with cystic fibrosis in those countries can avail of the medicine.

There has been engagement with the company for more than a year and this was ramped up in the past month or so. My understanding is that this has gone through the drugs committee and to the HSE directorate and that the new offer from Vertex to the HSE is far more significant, perhaps, but different from the previous offers in terms of reduced pricing and, more critically, covering future pipeline medications that would cover the cohort of people with cystic fibrosis who have the F508del mutation. In other words, future and better medications will be part of the deal, there is a long-term dimension to it and it covers Kalydeco as well.

I have a basic question for the Taoiseach. People have been patient and Cystic Fibrosis Ireland and its chief executive officer have been very reasonable. Will the Taoiseach let the House know when we can expect a decision on facilitating the availability of Orkambi to people in this country with CF who would benefit from it?

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