Micheál Martin (Cork South Central, Fianna Fail) | Oireachtas source

The availability of Spinraza has been debated in this House for a long time. Some time ago, many of us met the children and families who desperately need this drug to help treat spinal muscular atrophy which, as the Taoiseach knows, is a muscle-wasting disease. This country and Estonia are the only European Union countries that have not approved this drug for reimbursement. The National Institute for Health and Care Excellence, NICE, in the United Kingdom has cleared its availability in the United Kingdom and Northern Ireland for patients. The Minister wrote to Deputies indicating that a decision was expected by 14 May but "that is not now the case". He added that the assessment is receiving "priority attention" but I do not know what the phrase "priority attention" means any more as this has been receiving "priority attention" for a long time. We are now faced with the prospect that children and families in Northern Ireland will, thankfully for them, be in a position to access Spinraza while in the Republic of Ireland they will still be left short. That is not good enough given the major anxiety, stress, damage and morbidity that arises from the condition.

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