Pádraig O'Sullivan (Cork North-Central, Fianna Fail)

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.

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