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Dáil
‹ An tOrd Gnó - Order of Business

Orphan medicines access

Summary

Pádraig O'Sullivan highlighted Ireland’s poor access to orphan medicines, including ravulizumab. The Taoiseach said he would ask the Health Minister for an update on the drugs.

Last month, data from the latest European Federation of Pharmaceutical Industries and Associations report showed that just 14% of orphan medicines licensed by the European Medicines Agency since 2019 are available to patients in Ireland. This places us 26th of 36 European countries. One such treatment, ravulizumab, remains unavailable in Ireland since its application in 2019, despite it being available in most other European countries. Separate rare disease pathways are now in place in several EU countries of similar size and economy to Ireland, such as Lithuania, Latvia, Estonia and the Czech Republic. The Taoiseach previously served as Minister for Health and he, too, had criticisms of the reimbursement system at that time. We can point to the implementation of a few recommendations in the Mazars report. Realistically, however, when will we see actual reform?

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Simon Harris The Taoiseach Fine Gael

I thank Deputy O'Sullivan, who has taken a particular interest in this issue during this Dáil term. I will ask the Minister for Health specifically in regard to the drugs he mentioned, which seem to be in the process for a long time. The Minister and his Department have been working on access to orphan medicines but I will ask him to get the Deputy the most up-to-date information.

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