Drug for children with spinal muscular atrophy too expensive, HSE says

Calls by campaigners and patient groups to approve the provision of a drug which they maintain would benefit children with a rare muscle-wasting condition have been rejected by the HSE.

Parents of children with spinal muscular atrophy have been campaigning for some time for access to Nusinersen (Spinraza). They are planning a protest at Leinster House later this month.

The drug could cost €20 million over five years and the HSE said it was not in a position to reach agreement with the manufacturer at a price that was viable.

The HSE said its leadership team had considered a report from the HSE Drugs Group which noted “the limitations of the current evidence on clinical effectiveness, and the high price being charged by the pharmaceutical company”.

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The HSE said the drug would cost €600,000 per patient for the first year and €380,000 per annum thereafter. It said it was “obligated to ensure that expenditure of this scale must represent evidence of clinical and cost effectiveness”.

It said, by comparison, that total expenditure by the HSE on “complex paediatric home care packages” last year was €23.8 million.

The HSE said it was anxious to provide “all possible support to this very vulnerable group of patients and those who care for them”. It said it had written to the company involved on Thursday informing them of its proposal to refuse reimbursement at the current price.