Paul Masterton MP, joined other members of parliament in urging the NHS and Vertex pharmaceuticals to reach an agreement to allow access to essential precision drug Orkambi.
This intervention by the MP and the cystic fibrosis community is crucial to highlight that people with CF have been waiting for three years for access to Orkambi, a treatment manufactured by Vertex Pharmaceuticals. The medicines are the first to treat the root cause of cystic fibrosis and have been shown to slow health deterioration and reduce the need for frequent hospitalisation. Without access to these medicines, people will inevitably suffer more rapid decline into debilitating illness, and in the worst cases, loss of life due to respiratory failure.
Deals recently struck between Vertex and the Danish, Dutch, Swedish, German, Austrian and Irish governments demonstrate the UK has fallen behind in supporting people with cystic fibrosis to access the most advanced therapies.
In North America, Europe, and Australia, 75,000 people live with cystic fibrosis with more than 12% of these people resident in the UK. Combination therapies manufactured by Vertex are the next generation of medicines.
Paul Masterton, MP for East Renfrewshire, commented:
“My constituents whose lives are affected by cystic fibrosis, and others across the UK, require immediate access to the most advanced medicines to manage this extremely serious condition. People with cystic fibrosis should be able to live full, healthy lives for as long as possible. There are drugs available today that can help them achieve that and they are being denied access. We are failing in our duty of care to the most vulnerable.”