THERE are over 10,800 people in the UK with cystic fibrosis and over thirty per cent (3,296) could benefit from being prescribed Orkambi.
Protesters wearing oxygen masks gathered at Downing Street, the Scottish Parliament and the Welsh and Northern Ireland Assemblies on Monday, 26 June, to call for the life-saving cystic fibrosis drug, Orkambi, to be made available on the NHS. Around 300 people turned out for the protests, while others supported on social media using #OrkambiNow.
Half of people with cystic fibrosis who died last year were aged under 30. However, studies suggest that if Orkambi was taken from childhood, people with the condition could have a near-normal life expectancy.
Orkambi is one of the only treatments that tackles the underlying cause of cystic fibrosis, a life-shortening genetic condition, which causes fatal lung damage. The drug has been found to extend life expectancy by slowing down lung deterioration in 40 per cent of those with the condition.
The drug has been licensed in the UK for over two years, but is still not available on the NHS as governments across the UK and Orkambi’s manufacturer, Vertex, have not agreed a price.
Lorraine Barnes has two sons aged 14 and 22 both of whom could benefit from Orkambi. Talking about her youngest son, Joseph, Lorraine said:
“Joseph’s lung function is about half that of a healthy child and he seems to get everything thrown at him courtesy of his cystic fibrosis complications. At night he has to be fed through a tube in his stomach and is in hospital every other month on IV’s for two to three weeks at a time.
“As a family we fight a daily battle with cystic fibrosis, full of medicine and regimes. Orkambi could change Joseph’s life for the better – it could give him a future.”
James Barrow, Head of External Affairs at the Cystic Fibrosis Trust said: “Cystic fibrosis is a cruel and life-shortening condition, which places a huge daily burden on people’s lives.
“Orkambi is a major step forward in the treatment of cystic fibrosis, which could help people live longer and has the potential to save the lives of thousands in the UK. It deals with the underlying cause of cystic fibrosis and prevents irreversible lung damage, which is especially important for children as they stand to benefit from it the most.
“If a deal between the Government and drug manufacturer over the price of Orkambi is not reached soon, we fear people will run out of time.”
For confidential advice, support and information on any aspect of cystic fibrosis, including help with financial support contact the Cystic Fibrosis Trust helpline on (+44) 0300 373 1000 or 020 3795 2184 or visit www.cysticfibrosis.org.uk