Current status: Answered by Shona Robison on 13 April 2017
To ask the Scottish Government how many people in each NHS board area it estimates have Leber’s hereditary optic neuropathy, and what (a) support and (b) treatment options are available.
(a) NHS boards are responsible for the design, delivery and management of services to their population. The support they provide will differ depending on their population’s needs.
(b) Decisions concerning the diagnosis, care and treatment of patients are individual. They involve professional judgement of the patient’s clinician, together with meaningful conversations with the patient that allows them to share decisions relating to their care and is based on understandable evidence about effect. The use of idebenone (Raxone®) to manage Leber’s Hereditary Optic Neuropathy (LHON) is highly specialist for a very specific condition, and this medicine is licensed only for use in this way.
The Scottish Government is clear that patient safety is a priority, therefore all medicines must be fully tested and researched before they can be licensed and made available on the NHS and this is the same for idenenone (Raxone®). This is in line with the license granted by the European Medicines Agency (EMA) for the use of idenenone (Raxone®) under exceptional circumstances for the treatment of LHON.