CYSTIC fibrosis suffer Rob Skinner is calling on the Government to fund a new drug that would prolong his life.
Rob, 21, who lives in North Swindon and was diagnosed with CF when he was just 16 months old, has a lung function of approximately 19 per cent.
But he has been told a transplant may never be an option for him because of a bug in his lungs called an atypical mycobacterium abscesses.
Previous medication he has taken to treat this bug has resulted in him losing his hearing and suffering with tinnitus.
However, a new drug called Kalydeco, which has been approved by the US Food and Drug Administration, could help prolong Rob’s life.
It is the first available drug that targets the underlying cause of cystic fibrosis and increases lung function for sufferers like Rob.
He has been approved for compassionate use of the drug by pharmaceutical company Vertex but his doctors at the Bristol Royal Infirmary have not yet given the prescription clearance, meaning Rob has been unable to access it.
He said he is concerned that the cost of the drug is preventing the drug being made available on the NHS and in turn, prolonging the lives of thousands of CF sufferers.
He said: “It makes me a little upset that I could have been having this drug for the last three months if my doctor had just said yes all that time ago.
“I first heard about the drug quite a few years ago, I was initially going to be on the trials for it but because I had a low lung function I couldn’t take part. I was quite excited as it's the first drug that actually treats cystic fibrosis and not its symptoms.
“So far it has shown to reduce hospitalisation, increase weight gain and lung function and has even shown that people who need it require less IV antibiotics and all this saves money in the long run.”
Rob, who says he has not left the house alone since 2009 because of his deteriorating health is now part of a group called the Quest For Kalydeco.
The group has created an online petition for Kalydeco to be made available on the NHS for all those with the G551D mutation, llike Rob, but a decision on this is not set to be made public until September.
To sign the petition visit http://epetitions.direct.gov.uk/petitions/34753.