I must confess that I'm regularly frustrated at the manner in which the discussion around Orkambi has taken place. At the centre of all this, we should remember, are people, families, who want to have the best possible treatment available on our national health service. Every single company that manufactures a medicine available for the NHS understands the process they must go through, and that process is to make sure that medicines are safe and effective and that there is an appropriate value for that treatment. This treatment—Orkambi—is not readily available on the national health service in any other UK nation. That is simply not the case. It is potentially—. It is not available in other nations within the United Kingdom, nor is it available in Wales. It is available on individual patient funding requests, and it has been made available on a trial basis by the manufacturer on a limited basis for people in each of the different UK nations. So, it is simply wrong to suggest that NHS Wales has taken a different view. That is part of my frustration, because I accept that Members in every party have had correspondence from the company, and I believe I've had correspondence from Members in each and every party in this Chamber who have written to me about the issue. And I am frustrated about the lack of clarity in the process. Because I do not believe that Members are recounting matters—they have not been told, and accepted in good faith.

The benefits are not proven—that is one of our biggest problems in this area. Orkambi did not simply fail a NICE appraisal on cost grounds, but NICE, on the information available to it on clinical data provided by Vertex, put it onto the 'do not use' list. Now, that is highly unusual, and that is because of the state of the clinical data available at the time. I have said, more than once, directly in correspondence to Orkambi, and, indeed, when I got doorstepped above this place by the company and their representative, that they need to engage in the process that they understand. And that is part of my frustration. I do not believe that you are having the full story painted to you. In the Petitions Committee, when they considered this matter—[Interruption.] In the Petitions Committee, when this matter was raised, it was stated that, since the NICE appraisal, there are now 96 weeks of additional clinical data available. NICE and the All Wales Medicines Strategy Group cannot assess that information, because it has not been provided to them. Once that information is provided to NICE, then a decision will be made. But it is the company's responsibility, and nobody else's, to provide that data and information, because they have access to it and no appraisal body does. I'm more than happy to talk to Members outside here, but my frustration is that I do not believe that the full picture is being provided to you about the manner in which this drug is and is not available and responsibility for that.