I want to pick up on a point made by Deputy Ward. He is right that an awful lot of these decisions come down to economics, and that is not the way it should be. There are clearly medicines that not only can make a profound impact on people's quality of life but can actually save lives. Of course, there has to be a system and decisions have to be made in an appropriate way, but that cuts very little mustard with someone like Craig Coady, who has lost a child through Friedreich's ataxia, and is now worried about his other child. It cuts very little mustard with a parent of a child who has Duchenne muscular dystrophy and who is watching their son's functions, muscular abilities, strength and ability to live their life to the greatest level possible go further and further from them. The key point is that there has to be processes, but they have to be efficient, quick and responsive, and in our view that is not the case at this moment in time. In the first instance, I welcome the fact that there is now a rare disease strategy. The implementation of it will be key, but there are a number of key points that Ireland is falling down on. First, in relation to orphan medicines, in the instance of the 5% of rare diseases that benefit from an orphan medicine, where treatments exist, access is delayed. The State is an outlier when it comes to early access. There is no early access scheme for rare diseases. That should be happening. Rare Diseases Ireland has made the call that it should happen within one year of EMA authorisation. That is the case already, for example, with givinostat, which will benefit those with Duchenne muscular dystrophy. It has already been approved by the EMA, but it has been quite delayed getting through the system here. It is also the case that the reimbursement system is not designed for rare diseases. This is not a contradiction, but sometimes when we talk about rare diseases, we think of it the wrong way. Each disease is rare in and off itself, but when we take them cumulatively, they are not rare. It is not unusual for someone in the population to have a rare disease. It affects quite a lot of people, but by the nature of each individual condition, which has a smaller evidence basis as patient populations are smaller, the reimbursement scheme is not working for them. Smaller numbers are affected and it is not designed for rare diseases and this needs to be addressed. I echo the point made in relation to the long-term illness scheme as well. There are instances, and I can send the Minister an example, where there are two people with the same disease with slight differences and one qualifies and one does not. That is not good enough either. The process clearly needs to be improved, but I welcome the progress made and I encourage the approval of givinostat and skyclarys.

Sentiment score: 0.07