A young woman who suffers from cystic fibrosis has been promised a meeting with Health Secretary Matt Hancock after campaigning for a vital drug to be made available on the NHS.
Sittingbourne mum Carlie Pleasant was diagnosed with CF as a nine-year-old and was initially not expected to live past 15.
She has turned 29 and has a two-year-old son Jude, but every day is a battle.
Scroll down to listen to Carlie Pleasant describe her battle to get a life-saving drug on the NHS
She has to have antibiotics intravenously injected five times a day and every meal requires her to take around 15 tablets to help her digest her food.
Mrs Pleasant wants to be able to take Orkambi, a life-changing drug widely available in the US and across Europe, where clinical trials have proved it improves lung function and respiratory symptoms for those suffering from the genetic condition.
The National Institute for Health and Care Excellence,which sanctions which drugs the NHS can prescribe has not disputed its effectiveness but is limiting its availability because of cost.
Mrs Pleasant said: “They will only issue it to people whose lung capacity is below 25%, that’s incredibly low and really too late to help.”
But a course of Orkambi, which is manufactured by Vertex, costs around £104,000 per year.
She said: “It’s a lot of money, but the cost of all the hospital stays and ambulances the NHS spends dealing with CF patients must be much more than that.”
The gene affected by cystic fibrosis controls the movement of salt and water in and out of cells.
The condition causes sticky mucus to clog the lungs.
It can also block parts of the digestive system and lead to conditions such as osteoporosis, arthritis and liver problems.
Mrs Pleasant has been sharing her experiences via a blog.
She said: “Mr Hancock’s staff wrote to say he had seen my posts and would like to come and meet me.”