CYSTIC FIBROSIS TRUST - ACCESS TO ORKAMBI

That this House notes that the National Institute for Health and Care Excellence (NICE) has found Orkambi to be effective and important for managing cystic fibrosis; regrets that uncertainty around its long-term effect and its high cost means NICE cannot yet recommend the drug to the NHS; commends the initiative of the Cystic Fibrosis Trust, consistent with the Government's own Accelerated Access Review, to accelerate access to the drug while informing assessment of longer-term effects through use of its UK Cystic Fibrosis Data Registry; and urges cooperation between the NHS and drug manufacturer Vertex to ensure that the 3,000 patients who could see huge health benefits from Orkambi are able to do so.