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PROTESTERS staged a day of action in London today demanding a drug manufacturer lower the price of a breakthrough medication to help victims of a debilitating lung condition.
Multinational medication manufacturer Vertex Pharmaceuticals has developed the drug Orkambi to treat cystic fibrosis, but the NHS cannot afford the £100,000 per patient per year price of treatment.
Two years of negotiations between the company and the NHS have failed to reach an agreement even though the treatment is available in Europe, Scandinavia, the United States, Canada and Australia.
The Cystic Fibrosis Trust, MPs and families and friends of sufferers presented a petition at Vertex’s British headquarters today.
Other activities involved a cross-party parliamentary event in Westminster, a protest at the headquarters of the NHS and a protest and candle-lit vigil in Parliament Square.
Cystic Fibrosis Trust chief executive David Ramsden said: “These precision drugs are essential to improve the quality and length of people’s lives.
“Three years of waiting and failed negotiations for access to Orkambi have been unbearable, with emotional and psychological stress for people with cystic fibrosis and those that care and support them.”
In Britain 10,400 people, including 5,000 children, live with cystic fibrosis. Half of those will die before they are 31.
A spokeswoman for Vertex Pharmaceuticals said: “We remain committed to finding a solution for access to our cystic fibrosis medicines for patients in the UK.”
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