Deputy Broughan recently submitted a Private Members’ Motion on Spinraza and it is now on the clár of the Dáil. The motion is supported by Deputies Thomas Pringle, Joan Collins, Clare Daly, Mick Wallace, Catherine Connolly, Maureen O’Sullivan, Gino Kenny, Bríd Smith, and Richard Boyd Barrett and Deputy Broughan hopes for an early opportunity to debate the motion.
There are approximately 70 people, including 26 children, in Ireland with Spinal Muscular Atrophy (SMA), which is a rare and life-limiting muscle-wasting condition. SMA is the number one genetic cause of death for infants worldwide and will affect around 1 in 11,000 babies born worldwide each year. Spinraza or Nusinersen, which is produced by Biogen, is the first treatment for Spinal Muscular Atrophy (SMA) and is available in 25 of the 28 countries in the European Union but in February 2019, the HSE did not approve Spinraza for reimbursement in Ireland and negotiations with Biogen are ongoing.