Isle of Man 'can't justify' funding drug for boy with muscle-wasting disease

Isle of Man 'can't justify' funding drug for boy with muscle-wasting disease, however England have justified this for 50+ children. Finley has a muscle-wasting disease which Health Minister Howard Quayle said Translarna, which is available in England, has an annual cost of between £200,000 and £250,000, and hasn't mentioned that their is a discount available via the Managed Access Agreement that NHS England agreed months ago as part of a bulk purchase. Unfortunately rare disease costs and research costs more per child, and the company have done their bit, and we need the Manx government to help too. The family of Finley Hesketh, of Onchan, believe the drug could help prolong his physical independence. But Mr Quayle said the decision, while "emotive", was based on advice from the Clinical Recommendations Committee. The meeting notes show Translarana was beneficial, however they couldn't justify the pre discounted cost. The Isle of Man group concluded that evidence for clinical effectiveness was currently "inadequate" to justify a six-figure-sum per patient per year. There is no evidence available and a reduced price to justify the IOM revisiting their original evaluation. Finley has Duchenne Muscular Dystrophy - an incurable condition which sees muscles gradually weaken, and he needs your help to get the same treatment as provided by England, Scotland, Wales and Northern Ireland.