Ruth Coppinger (Dublin West, Solidarity)

On that same issue, Duchenne muscular dystrophy is a muscle-wasting progressive illness that normally starts affecting boys aged between two to three years. It is a life-altering condition. One parent said her four year old could be knocked down by gust of wind. The condition is progressive. Walking can sometimes become difficult and the patient can become a wheelchair user. The disorder has no cure and needs to be acted on extremely quickly. Givinostat is a drug that has been shown in other trial areas to be extremely effective. Parents are desperate to get access to this drug. The EU approved the drug and fast-tracked it on 5 June. The Irish State needs to do the same. The National Centre for Pharmacoeconomics needs to give approval to the drug. The difficulty is that drugs can take up to two years to be approved in Ireland. This is largely due to understaffing issues. The UK has fast-tracked and approved the drug. This is vital. Parents have marched and have been outside due to this issue. The State must do all it can to approve this drug so that these young boys do not have their conditions deteriorate and do not wait any longer.

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