New hope for cystic fibrosis patients
NHS bosses have made an ‘improved’ offer to a pharmaceutical company in an attempt to break the deadlock over access to a vital cystic fibrosis drug.
A row between the US firm Vertex and the NHS over the cost of Orkambi has dragged on for three years with no breakthrough.
Cystic fibrosis is a genetic disorder – mostly affecting the lungs – that shortens life expectancy. The game-changing medicine could improve the health of around half of the 10,000 people with the condition in the UK.
But Orkambi has a list price of £104,000 per patient per year and the drug must be taken for life. Yesterday John Stewart, national director of specialised commissioning, told the Commons health and social care committee that NHS England had held five meetings with Vertex since the start of March, but had ‘not received any specific or formal proposals from Vertex during this period’.
However, NHS England had submitted a ‘revised and improved’ offer to Vertex.
Mr Stewart said details of the offer were commercially sensitive, but it included a proposed two-year ‘managed access’ arrangement for Orkambi and another cystic fibrosis drug, Symkevi, for all eligible patients.