‘Let me live a longer and more normal life’

Courtney Read, 22, wants Health & Social Care to offer the drug Orkambi so that she can plan for the future and live with less worry.

Cystic fibrosis is a genetic disorder which causes the lungs and digestive organs to become clogged with mucus,. The average life expectancy of someone living with this condition today is around 35 years.

Ms Read described the impact the condition has on her lifestyle.

‘I have to spend all day everyday at home hoping I will feel a lot better, I spend about two to three hours every morning coughing and throwing up, and then that leaves me with no energy at all so I have to go back to bed after that episode of constant coughing.

‘I’m always worried about catching bugs and lung infections, I don’t like the exposure at the doctors or in shops.

‘It’s impossible to have a work life or social life, I have to just sit back and watch my friends go out and wish I could be there.’

In clinical trials, Orkambi has been shown to improve lung function and respiratory symptoms, and extend lives.

Patients in some European countries and the US are able to access the drug, but in the UK, NHS officials have said it is too expensive.

The manufacturer, Vertex, has priced the drug at £105,000 per patient per year.

A spokesman for HSC said it was unable to comment on Orkambi at this time.

Ms Read is confident the new drug could make a big difference to her quality of life. ‘I want to be able to get up in the morning and be able to plan ahead for the day without having to worry.’

Ms Read and her family and friends took part in a lying down silent protest outside the Royal Court yesterday in support of action taking place in the UK where cystic fibrosis sufferers and their families were lying down in Parliament Square.

She was heartened by the support. ‘I absolutely loved it, it meant a lot to me.I spend a lot of my days alone so I can’t thank them enough for turning up today.’

Also at the silent protest was Ms Read’s father, Mike. He spoke about the anguish of seeing his daughter suffer.

‘My daughter will die sooner rather than later without access to these drugs.

‘The new drugs increase life by up to 40%, reduce hospital admissions by up to 60%, it really makes them feel much better and gives them hope that they can lead a relatively normally life, and the current drugs don’t do that.’

With the imminent release of HSC’s drug and treatment review Mr Read is hopeful that in future local clinicians will be able to prescribe the latest drugs.