A Tadworth mum’s passionate campaign for cystic fibrosis medicine Orkambi to be available on the NHS is gaining traction in Parliament after being debated yesterday.

Sharon Cranfield, whose daughter Jessica has cystic fibrosis, described the profound suffering this currently life-limiting disease causes.

“Imagine trying to breathe through a straw,” said Sharon. “You will always feel like you’re suffocating. That is what it’s like.”

She, along with other 'CF warriors' and their loved ones, have been spearheading the #OrkambiNow campaign which is supported by the Cystic Fibrosis Trust.

Crispin Blunt, MP for Reigate, spoke passionately on their behalf at Westminster Hall yesterday (May 19).

He said: “Since last summer, when Jessica able to access Orkambi on a compassionate use scheme for those with the lowest lung function, Jessica’s quality of life has been transformed.

“The medicine reduces the mucus that builds up in the lungs causing infections and damage.

“And already, Jessica is benefitting from fewer exacerbations – which before treatment with Orkambi were causing hospitalisations of around four times a year of up to a month at a time – taking her out of school.

“Judging from stories like Jessica’s and the growing body of evidence which shows how the medicine is working effectively to keep children and young adults with cystic fibrosis out of hospital, there is a clearly a very strong case for making this medicine available on the NHS.”

Crispin Blunt also praised Mrs Cranfield for the “amazing job” promoting the petition to parliament, which had more than the 100,000 signatures required to be considered for debate.

He added that Orkambi received its European licence more than two years ago and the UK is falling behind with its “outdated” approach to medicines for rare diseases.

Vertex, the manufacturer of Orkambi, has proposed an arrangement for the NHS so that all current and future medicines could be available at a fixed cost, irrespective of the number of patients treated.

The pharmaceutical company expects to develop drugs which will treat 90 per cent of cystic fibrosis patients within seven years.

Crispin Blunt added: “As my constituent Sharon Cranfield said to me, ‘each day of delay is an additional day of irreversible lung damage for those with treatable cystic fibrosis.’”

A Vertex spokesperson said: “CF is a devastating disease where half of people die by the time they are age 31 – and the UK has the second-highest number of CF patients in the world.

"The situation with CF in the UK is unique and needs a unique solution – this is what Vertex’s portfolio approach offers.

“As many MPs reflected in the debate, the key challenge we face is the NICE approval process which was developed nearly 20 years ago before precision medicines like ORKAMBI® for small patient numbers existed – as one participant in the debate said – ‘it is an analogue process for a digital age’."