Cystic Fibrosis is a genetic disease that can have a devastating impact upon an individual and their families. The treatments currently available in the UK for Cystic Fibrosis sufferers are limited, however, a revolutionary drug, Orkambi, has been proven to massively improve the quality of life of sufferers. Orkambi is currently not approved for use on the NHS, despite being approved by the European Medicines Agency and being available in seven European countries including Northern Ireland. This issue has been raised by several of my constituents and I have been following developments closely over recent years.
Gaining access to life-changing treatments such as Orkambi is something I feel strongly about. I have been very active in working with both the pharmaceutical company Vertex, who produce Orkambi, and my constituents to find a solution that will enable sufferers to gain access to this treatment.
In February I attended a round table meeting on Orkambi and Cystic Fibrosis to show my support to both my constituents and other sufferers of Cystic Fibrosis. Following on from this, I also organised a meeting with my constituents, Vertex and the Cystic Fibrosis Trust where we discussed access to Orkambi for NHS England patients. I am committed to finding a solution that will enable rapid access to this pioneering drug and I am proud to say I have signed a cross party letter to Vertex Pharmaceuticals calling for an urgent resolution.
Although Vertex and the NHS are finding it difficult to overcome the various hurdles, I will continue to do all I can to support my constituents.
You can read a copy of the cross party letter here.