Orkambi December 2016

Thank you for contacting me regarding access to Orkambi and the related campaign by the Cystic Fibrosis Trust.

I sympathise profoundly with anyone affected by cystic fibrosis, and I know how important it is to bring new treatments forward to help control the symptoms. 

I appreciate the disappointment that was felt when the National Institute for Health and Care Excellence (NICE) decided not to recommend Orkambi for use by the NHS. The Cystic Fibrosis Trust has said the drug has been seen to slow down the progression of the illness by almost half over a two year period. I agree that this evidence should be made better available for consideration as part of the appraisal process - drugs like Orkambi need the chance to show their value over time. 

Thank you for bringing my attention to the Parliamentary debate concerning the implications of the accelerated access review (AAR) for cystic fibrosis and other conditions, which took place on Tuesday 13 December 2016. I welcome the publication of the review and I agree with the Cystic Fibrosis Trust that its recommendations could be key to addressing many of the issues regarding access to new drugs like Orkambi. 

I know that many thousands of people across the country have taken part in the campaign to put pressure on the Government to end the impasse between the pharmaceutical company that produces Orkambi and NHS England. I believe one way it could do that is to begin the job of implementing the recommendations set out in the AAR. 

The Government has confirmed that it is currently considering the results of the AAR. I can assure you that I will follow its response, and subsequent developments, closely.

Thank you once again for contacting me and for sharing your views, which I will continue to bear in mind.