The decision not to allow Cystic Fibrosis sufferers a precision drug which can lessen symptoms and extend their life must be looked at again, an MP said.

Tatton MP Esther McVey has written to Health Secretary Jeremy Hunt over access to Orkambi, which is licensed in the UK but not currently provided by the NHS, so is not available to most people.

Cystic fibrosis is a life-shortening, inherited disorder leading to severely reduced quality of life through a build-up of thick, sticky mucus that causes chronic lung infections and progressive lung damage. Half of all people who died with CF last year were under the age of 31.

Ms McVey said: “The National Institute of Health and Care Excellence (NICE) recognised that Orkambi was an important treatment but last year the organisation did not recommend the drug on grounds of cost-effectiveness and lack of data. More data is available now and it is right it should be looked at again.

“I met with constituents Fiona Brown and Dominique Paton, who both have a child with CF so they know how this impacts a family and rightly are campaigning for access to the precision medication which could prolong life and improve lung function. It was both humbling and educating to talk to them both and I will do everything I can to push this issue with Jeremy Hunt.”

Ms McVey attended an event in Westminster hosted by the Cystic Fibrosis Trust to raise awareness of the new medicines available. According to the CF Trust there are now 96-week clinical data available which shows Orkambi can reduce lung function decline by up to 42 per cent.

There are 10,400 people with CF in the UK and it is thought Orkambi will help 40 per cent of them. Conventional treatments for CF target the symptoms whereas precision medicines such as Orkambi tackle the underlying genetic mutations which cause the condition. Current medications available see sufferers take up to 50 tablets a day to treat symptoms.

 Orkambi is not a cure but has been found to reduce pulmonary exacerbations leading to hospital admissions by up to 61 per cent as well as slowing down the decline of lung function.

For more details on Cystic fibrosis go online to cysticfibrosis.org.uk