John Brassil (Kerry, Fianna Fail) | Oireachtas source

My contributions are not by way of being critical, they are by way of asking how we improve the system. I fully appreciate the work that the witnesses do and that their goal is the same as mine. The witnesses do not need to be defensive as far as I am concerned. I respect what they are doing. I am just trying to improve what we do with the resources we have to make as many new and orphan drugs available as we can that are beneficial and cost effective.

The supplementary question I have, which I asked the last time that the witnesses were in, and did not get an answer to at the time may be something that the witnesses could follow up for me. What percentage of our drugs bill is spent on orphan drugs and drugs for rare diseases? That is an important statistic for the witnesses to have so that they can compare it with other EU countries. It is important if we are in a low percentile, we could increase, mindful of the fact that as technology develops and companies develop new medicines, we should have a target percentage-wise and work within those parameters. That might make it easier for the witnesses to do their job as well.

Kuvan is under discussion. There is substantial evidence, I hope, to show that Kuvan does work. Mr. Flanagan made the point that there are 45 drugs and we are only talking about a few. I would respond by saying that the reason we are only talking about a few is because I believe those drugs to be effective and that is why we are arguing about those. I believe in Respreeza. I have met the patients, I have dealt with them, I have spoken to them, I have seen the benefit to them and that is why I am advocating on their behalf. The same applies with Kuvan. I have met the families involved and I have seen the research. The drug can bring about a very significant improvement in quality of life I am not going to get into the Translarna one because I think it has been debated enough.

The last point I would make to Mr. Hennessy concerns the comment he reiterated about Respreeza coming back on the witnesses. I think the Declaration of Helsinki clearly states that we are involved whether we like it or not. I also go back to the point about the reply to the parliamentary question, whether it was something that the witnesses are going to regret putting in or not for rest of their days. I do not know. However, by stating that the HSE will continue to provide the treatment for that patient cohort for two weeks I firmly believe that basically says that the witnesses believe that it has a benefit or otherwise they would not have agreed to do that. Please take all those things into consideration and sort out this administration issue so that we can get it out of the way and hopefully in six months time we may come to a solution on that particular product.