Cystic fibrosis

While there is no cure for cystic fibrosis, it remains a key commitment of the NHS that patients with this disorder are offered the best treatment available to help ease their symptoms and make the condition easier to live with.
 
I am glad that all new-born babies across the UK are screened for cystic fibrosis as part of the new-born blood spot test, carried out shortly after they are born. This helps to ensure early diagnosis, with the median age at diagnosis for the condition at two months, and faster treatment. 
 
The National Institute for Health and Care Excellence (NICE) has also recently produced a new best practice guideline for treating cystic fibrosis. This guidance ensures that clinicians are aware of the best methods to monitor the condition, manage symptoms, and improve the quality of life of patients with the disorder.
 
With regard to the availability of Orkambi for the treatment of cystic fibrosis, I know many families affected by cystic fibrosis have placed a great deal of hope in this drug. However, I understand that dialogue between NHS England and Vertex - Orkambi's manufacturer - remains ongoing, and I very much hope a positive solution can be found. You may also be pleased to know that NICE plans to review its guidance on the prescription of Orkambi for cystic fibrosis in July 2019.

I am aware that a debate was held on 4th February to discuss crown use licensing and how it might be used in the case of Orkambi. I understand that my colleagues in the Department of Health and Social Care are keeping all options on the table. However, they are clear that the quickest and best solution for patients is for Vertex to accept the NHS's offer - the largest ever offer of its kind in the history of the NHS. I and my Ministerial colleagues urge Vertex to accept this very generous offer.
 
I am delighted that the Cystic Fibrosis Trust is investing in cutting-edge research into transformational therapies and better treatments. With over £6.3 million invested into research by the Trust during the 2016/17 financial year, I am hopeful that this research will lead to even higher standards of living for those diagnosed with cystic fibrosis in the future.