Cystic Fibrosis Trust - Access To Orkambi

EDM number 1330 in 2015-16, proposed by Stuart McDonald on 11/04/2016.
Categorised under the topics of Diseases and Health services.

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.

This motion has been signed by a total of 16 MPs.