Yesterday there were protests outside the gates of Leinster House to raise awareness about Duchenne muscular dystrophy. Thankfully, the Minister of Health is here today. To be fair to the new Minister, since she assumed her role she has been very supportive in the area of rare diseases and I thank her for that. Duchenne muscular dystrophy is a very degenerative disease that affects boys predominantly. They deteriorate rapidly and many are lucky to survive beyond 20 years of age. A drug, Givinostat, that is available in the UK and Northern Ireland is not available here. I understand that EMA approval was only given for it last Friday, so it is very early in the process. In the programme for Government there are two commitments. There is a medium- to long-term commitment to review the reimbursement system, and I suggest that this should be done. I am glad that commitment was given in the programme for Government. There is also a reference to early access schemes. I am asking that in the case of the 100 to 120 people nationwide who have Duchenne muscular dystrophy - they are predominantly boys - an early access scheme should be looked at. That can be done in the short term. I urge the Minister of Health to detail to the House what plans she has on that.

I thank the Deputy for his ongoing engagement on this issue more broadly. He is right that the drug has been approved by the EMA. The next stage is that the drug company must make an application to the HSE. I checked this morning to see if that had happened. It has not happened yet. Perhaps it has happened in the period I have been in the House, but it had not happened when I checked. I will be watching it very closely. I have already spoken to the Secretary General of my Department and to the CEO of the HSE about this drug and the process it will go through. The Deputy is aware that we have increased capacity by 100% in managing the process within the HSE to make that faster. There are a number of Deputies in the House with a very strong interest in this. I am aware of the issues relating to early access and of the need to provide a system to enable that. That is the most updated position that I have. I will be watching very closely and working with Deputy O'Sullivan, and Deputy Aird who has raised this in a different context.