Emer Higgins (Dublin Mid West, Fine Gael) | Oireachtas source

Wait times for access to medicine for those with rare diseases is growing. The Alliance of Rare Disease Companies Ireland tells us that Ireland now ranks 31st out of 37 countries when it comes to waiting lists for approval of drugs. Patients are waiting for an average of 877 days for orphan medicinal products to be approved. That is more than two years of uncertainty for them. Six years ago, the Joint Committee on Health set about changing this. It called for a review of the evaluation and the reimbursement process for medicinal products intended for rare diseases. Since then, we have seen the Mazars implementation report , which looked at this, but where is the follow-up? These patients need mechanisms that allow for direct and urgent access to therapies and medicines for their rare diseases. We are talking about people's lives that can be transformed if they have access to the right treatment. How can we deny them this through long wait times?

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