HSE approves drug to treat Spinal Muscular Atrophy

The Health Service Executive has approved the only treatment on the market for the rare muscle-wasting disease Spinal Muscular Atrophy .SMA is a genetic condition that affects the nerves in the spinal cord. It causes problems with movement, muscle weakness and difficulty breathing and swallowing.

— Simon Harris TD June 11, 2019 SMA Ireland also used Twitter to welcome the "positive announcement", but added that the group was awaiting the full details of the approval. All at SMA Ireland and all people with SMA are deeply concerned that the HSE/Government may apply an age based cut off to treatment to save costs. https://t.co/ngjxRBBtQC

In a statement, Stephen Donnelly said: "This has been a long-fought battle by those suffering from the rare muscle-wasting disease, spinal muscular atrophy who rightly wanted the health service here to follow the example of almost every other European country and supply Spinraza." Frank Browne, whose daughter Emma died from the disease in 2004, said that it has been a "rollercoaster" of a campaign.

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