East Dunbartonshire MP calls for urgent access to vital drug
East Dunbartonshire MP Jo Swinson has called for urgent access to a vital drug after meeting with local grandfather Charles Boyle.
The Bearsden man’s granddaughter Zoe suffers from cystic fibrosis and the drug Orkambi would benefit her condition.
But although it has been available for more than three years, the pharmaceutical firm which manufacturers it is still wrangling with the NHS over its cost.
Ms Swinson met with Mr Boyle after signing a letter with 63 other MPs, which was sent to drug manufacturer Vertex Pharmaceuticals.
The letter calls on the firm to “hammer out an agreement” as a matter of urgency with the NHS on pricing for the medication.
Orkambi is a combination drug available as a single pill for treating cystic fibrosis. Its use would benefit more than 3000 people in the UK.
The MP said: “It was a pleasure to meet Charles. It’s deeply disappointing an agreement has not yet been reached between Vertex and the NHS. Three years is far too long to wait for access to Orkambi for those with cystic fibrosis, particularly given the average life expectancy of those with the condition is only 47.
“I will continue to raise this issue until Orkambi is made available.”