West Lancashire MP Rosie Cooper joined with other members of parliament in urging the NHS and Vertex pharmaceuticals to reach an agreement to allow access to essential precision drug Orkambi.
MP Rosie is joined by families of people with cystic fibrosis and patient advocate charity, the Cystic Fibrosis Trust at the parliamentary event which took place at the Houses of Parliament in Westminster.
This intervention by MPs 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.
Rosie Cooper MP said:
“My West Lancashire constituents whose lives are affected by cystic – 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 can help them achieve that and they are being denied access. The system is failing in its duty of care to the most vulnerable.
“I have lobbied both the Secretary of State for Health and Social Care and the NHS England Chief Executive on this matter and have recently written to ask what action they are taking to ensure Orkambi is made available on the NHS.”
Parliamentarians, the Cystic Fibrosis Trust, people affected by the condition and their families together with clinicians urge both Vertex and the NHS to move forward to facilitate access to essential medicines as soon as possible.
Cystic fibrosis (CF) is a genetic condition affecting more than 10,400 people in the UK. It is an inherited condition. It can’t be caught or developed later in life. One in 25 of people carry the gene that causes cystic fibrosis.