Mark Daly (Fianna Fail) | Oireachtas source

Could the Leader get an update for the House on the purchase of Orkambi for people suffering from cystic fibrosis? We all know the Government has done a cost-benefit analysis on it and the determination by those who wrote the report was that the benefits did not justify the costs to the Exchequer. While it does not benefit everybody who takes it, Orkambi benefits some. For those who have taken it and for whom it has been successful, it has been life transforming and, in many cases, life saving. People who suffer from cystic fibrosis can spend weeks and months in our hospitals tying up those valuable beds which we need for others. That is why I ask the Leader to organise another debate on the issue to question why the Government is not providing the funding.

Orkambi is an expensive drug and other countries have done deals with the manufacturers. However, it is of benefit to those who suffer. We must ensure the Government puts aside the funding to give the benefit to those who would have a better quality of life if they took Orkambi. The Government must do a deal. The Minister was brought here before on the issue and I do not want to bring him in again at short notice. However, the Leader must update the House on what the Government will do to help those who suffer from cystic fibrosis.

Last week, as the Leader knows, we had many statements, which can be helpful, although we are a legislative body and that is what we should be doing. I have spoken previously on the Irish Sign Language Bill and on the Corporate Manslaughter Bill. The Bills were passed here on Second Stage before Christmas. We have put the House on notice that on 29 March we will pass All Stages of the Irish Sign Language Bill. We have written to the various Government Departments and tried to engage with them, before and after Christmas, seeking their amendments to the Bill. They have not been forthcoming. We will not accept amendments that will make the Bill unworkable or of little use to members of the deaf community. Could the Leader update the House on what will happen with the Bill and if the Departments are going to table amendments? If not, that is okay. We will pass the Bill, and the Corporate Manslaughter Bill, on 29 March.

The Corporate Manslaughter Bill was initially proposed by the Law Reform Commission after another scandal regarding the failure of Government systems when it failed the haemophiliacs and women who contracted hepatitis C through contaminated blood products. Will the Leader update the House on what the Government will do, whether it will come forward with the amendments to the Bills I mentioned, and regarding those suffering from cystic fibrosis and who badly need Orkambi to change and save their lives?