Published: 00:01, 11 January 2018 |
Updated: 08:36, 11 January 2018
Carlie O’Hare wants to be able to take Orkambi, made available in Ireland and the US after clinical trials proved it improves lung function and respiratory symptoms in those with the genetic condition.
Whitehall, however, has blocked attempts to make it routinely available on the NHS on the grounds that it is too pricey.
It would cost about £104,000 a year to give CF patients the drug, but Mrs O’Hare, 28, who works in recruitment for Maidstone and Tunbridge Wells NHS Trust, is not expected to live beyond 40 without it.
She takes some 45 doses a day of Creon 10,000, which provides her with the enzymes needed to break down food but still leaves her feeling tired and frustrated.
Mrs O’Hare who gave birth to her first son, Jude, six months ago, was diagnosed when she was nine.
She admits she has spent a lot of her life feeling lonely, as fellow patients are advised not meet each other, to avoid sharing infections.
Mrs O’Hare, from Sittingbourne, said: “Orkambi dramatically increases your life expectancy and it’s ready and waiting to give out to patients but every time it goes to parliament, they say no.
“I appreciate it costs a lot of money but the hospital stays and ambulance costs of dealing with CF patients are far more than that.
"Smoking cost the NHS 2.6bn in 2015. I’m not saying refuse them treatment but they are choosing that lifestyle and we are trying to fight against ours.”
Now Mrs O’Hare is sharing her experiences via an online blog and hopes the government will change its stance.
The gene affected by cystic fibrosis controls the movement of salt and water in and out of cells.
It can cause sticky mucus to clog the lungs and airways, which can stop them working properly.
It can also block parts of the digestive system and lead to conditions such as osteoporosis, arthritis and liver problems.
The drug Orkambi has been found to help with lung function and respiratory symptoms.
But a spokesman for the National Institute for Health and Care Excellence (NICE), which advises NHS England on the use of new and existing medicines, said: “NICE issued guidance in July 2016 which did not recommend Orkambi to treat cystic fibrosis.
“The decision was based on the evidence and price proposal provided by manufacturer Vertex at the time of the appraisal.
“A consideration of a review of the guidance can be brought forward where there is new evidence that is likely to impact on the current recommendations.
"We remain open to a further approach from the company, for example, with new data or a revised price.”
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