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MDI Statement On NCPE Rejections Of Nusinersen (Spinraza)

MDI Statement on NCPE rejections of Nusinersen (Spinraza)

Today (19th December 2017), the National Centre for Pharmacoeconomics (NCPE) have issued their recommendation following the Health Technology Assessment (HTA) of Nusinersen for the treatment of 5q Spinal Muscular Atrophy (SMA). The NCPE has not recommended for reimbursement of Nusinersen at the submitted price.

MDI understands that this decision will be very disappointing and frustrating for our members living with SMA and their families who could benefit from this treatment. However, it is important to note, that this recommendation only forms part of reimbursement process. The next stage in the process will involve further price negotiations between Biogen and the HSE Corporate Pharmaceutical Unit and subsequently a final decision will be made by the HSE Drugs Group.

​Any members who have questions about this recommendation can contact clair@mdi.ie

Anton Mannering

Anton Mannering is step-father of Jordan Perez, a 10 year old boy with SMA type 2. They live in Co. Clare.