Julian welcomes announcement new Cystic Fibrosis drug will now be available on the NHS
October 24, 2019
Julian has warmly welcomed this morning’s news that the medicine Orkambi will become available to Cystic Fibrosis patients on the NHS in the next 30 days, following an agreement between NHS England and the manufacturer Vertex after long negotiations. He has campaigned for this medicine to be made available on behalf of affected local residents for several years.
Orkambi can have a life-altering impact on the lives of people with Cystic Fibrosis, helping to alleviate some of the debilitating symptoms of this condition. Data suggests that this medicine can slow lung decline by 42% and reduce the number of infections requiring the hospitalisation of sufferers by 61%.
The National Institute for Health and Care Excellence (NICE), the body responsible for recommending drugs for use in the health service had previously refused to approve the medicine for NHS use on the basis that it would not be cost-effective for the health service, and that there was not enough long-term data on its use.
This new deal covers both Orkambi and Vertex’s two other cystic fibrosis medicines, Symkevi and Kalydeco, all of which will now be available free of charge, with no cap on patient numbers, and will be of benefit to around 5000 people nationwide.
On hearing the news, Julian said: “Today’s news will be a huge relief for Cystic Fibrosis patients after a long and uncertain wait for access to this amazing medicine.
Over several years I have represented a number of local residents who are either patients or family of patients in lobbying the government and the manufacturer on this, and have also been in contact with the Yorkshire Parents Cystic Fibrosis Support Group.
I am glad that the NHS have acted on the calls from families, and many MPs alongside myself to work until they secured this drug for patients. In May and July, I joined with other parliamentary colleagues in signing letters to the Prime Minister, the Health Secretary and the Chief Executive of Vertex, asking them to push for an agreement.
I have also previously met with Vertex on the matter, and wrote formally to the Health Secretary, requesting that he ask NICE to bring forward its scheduled review on its initial decision not to recommend NICE for use on the NHS.
I will of course keep a close watch on the progress of the introduction of Orkambi on the NHS, and hope this agreement means we can now open a more hopeful and stress-free chapter for Cystic Fibrosis patients, and their families, who have had to go through so much in this long and uncertain process. I will remain vigilant to assist constituents who have any further questions on the implementation of plans to provide this medicine, or if there are any hitches along the way.”