Opposition TDs criticise HSE for failing to approve Spinraza due to cost issues
Families of children with a rare muscle-wasting disease have protested outside the Dáil calling for the HSE to approve a new and highly expensive treatment that could save their lives.
The HSE leadership team decided last week not to reimburse the drug after hearing its drugs group had failed to reach agreement with manufacturersSpinraza would cost €20 million over five years, or €600,000 per patient for the first year and €380,000 in subsequent years, it has said. Mr Lannon said that unless there is wider access to Spinraza, children would inevitably and unnecessarily die. “No price can be put on what this drug has done for Nell,” he said, while going on to accuse the HSE of “cynically manipulating” the cost and effectiveness data on the drug.
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