A CYSTIC fibrosis sufferer from near York has told how a new drug could transform her life - as MPs today (Monday, March 19) debated calls for it to be made available on the NHS.

Lynsey Beswick, 35, of Wheldrake, said she feared she might die before she could get access to Orkambi, as her lung function had declined significantly in the past two years.

“I am constantly breathless, have coughing fits, am underweight and have developed CF related diabetes,” she said.

“Whilst my friends are settling down, getting married and starting families, I am essentially facing end of life. That is really difficult knowing there is a drug that could help.

“I live in fear of the future. Yet there is a drug out there that could slow the decline or even improve my health.”

She spoke out after a debate was sparked at Westminster by an e-petition calling for access to the drug which was signed by more than 100,000 people.

Her MP, York Outer’s Julian Sturdy, said the current position of the National Institute for Health and Care Excellence (NICE)was that there was not enough long-term data for the drug and providing Orkambi on the NHS would not be cost-effective.

He said this guidance was scheduled for review in 2019, but he believed there was a strong case for NICE to bring this forward and review its recommendations on Orkambi immediately.

He said Vertex, the drug’s manufacturers, had presented new long-term data which was not available at the time of the previous review, demonstrating the drug’s effectiveness, and also outlined new proposals for reimbursement which should make it more affordable.

“I hope that NICE, NHS England and the Department of Health listen to calls from me and other MPs to bring forward its scheduled 2019 review of its decision not to recommend Orkambi to treat Cystic Fibrosis,” said Mr Sturdy.

“I believe the new data on the effectiveness of Orkambi, and the new financial proposals by its manufacturer make it essential this is done as soon as possible.” He said he had supported calls for easier access to new medicines for CF sufferers for several years and would continue to lobby the Government.