A young Milton Keynes woman battling against cystic fibrosis is fighting for the NHS to prescribe a wonder drug that would transform her life.
Health bosses have deemed the drug, called Orkambi, is too expensive because it costs £104,000 per patient per year.
But Kate Eveling, along with hundreds of other cystic fibrosis patients, say the benefit it would bring to them is priceless.
At the age of 24, she faces a daily battle simply to breathe, taking 30 to 40 tablets a day as well as daily nebulisers and physiotherapy.
Orkambi treats the underlying cause of cystic fibrosis and is proven to improve lung function by up to 42 per cent, while reducing hospital admissions by 61 per cent.
Currently only around half of the people with the condition will live past the age of 40.
Kate said: “It’s not a cure but it will prevent further lung damage from occurring - which gives us an extension in our life expectancy and also a better quality of life.”
A keen video-maker, Kate has created a YouTube film of people with CF urging the government to allow Orkambi to be prescribed on the NHS.
“It involves CFers of all ages. People with CF cannot meet for risk of giving each other chest infections, formally known as cross infection. So I decided to create the video in which our voices could be heard together, as one,” she said.
Kate, who lives in Newton Longville, is also actively battling through her blog, The View From the Other side, and her Facebook page of the same name.
Meanwhile she is determined to lead as normal a life as possible, pursing her passions for writing, video-making and playing the drums.
She works as a part-time dog walker, though CF is making even that difficult.
In her blog she describes how exercise can affect her lungs so badly that she coughs up blood afterwards.
Even a simple thing like laughing can cause “15 minute of chaos, coughing and wheezing and taking many, many puffs of my inhaler”, she says.
“I’ve realised that perhaps my time as a dog walker is nearly up... I feel terrible and also like I’m letting people down. I hate not giving 100 per cent, while at the same time my health is taking a hit.”
To watch Kate’s Orkambi Now video, see www.youtube.com/watch?v=hVqiOKwg9Ww
The UK cystic fibrosis community has been fighting for over two years for access to Orkambi.
NICE were unable to recommend the drug for use on the NHS due to cost grounds, and lack of long-term data.
In January a petition to was launched by two mums. It attracted 100,000 signatures in 11 days ,and now has over 114,000 signatures.
The following month there was a round table event attended by MPs representing constituents from around the country, the drug manufacturer Vertex and the Cystic Fibrosis Trust. CFers and their families held a protest rally outside Westminster on the day.
Last week there was a government debate about Orkambi and again the CF community staged a rally.
Vertex have now announced they have finally put forward a new ‘portfolio’ proposal to NHS England for access to their current and future CF treatments, including Orkambi.