FRESH hope has been brought to the table in the fight to make vital cystic fibrosis drugs available on the NHS.

NHS England and Vertex Pharmaceuticals have met on five occasions since Parliament’s Health and Social Care Committee held an inquiry into the provision and pricing of wonder-drug Orkambi, and other precision medicines for the treatment of cystic fibrosis (CF), in March.

Both sides wrote to committee chair Dr Sarah Wollaston on Thursday - and revealed potentially promising updates about their discussions.

NHS England has proposed a "managed access arrangement" while Vertex said it has offered significant discounts.

They are yet to reach a deal, but CF campaigner Dave Louden said: “It seems like things are finally moving in the right direction which is brilliant.

"Without a doubt this is the closest we have ever been to getting the drugs available.

"It's like they are running the final 100 metres of a marathon. The finish line is in sight and they have got to not take their foot off the gas. I've got everything crossed that it finally happens."

Mr Louden's four-year-old daughter Ayda suffers from CF. Her life could be changed and her future guaranteed if she was given access to Orkambi.

He said it was promising to know the two sides had met five times since the inquiry and that precision medicines for other illnesses had been approved.

John Stewart, NHS England’s national director of specialised commissioning, said a “revised and improved” offer had been submitted to Vertex. Its details are commercially sensitive but he revealed “we have proposed a two-year managed access arrangement for Orkambi and Symekvi, providing full access for all eligible patients.”

This would allow for the collection of patient outcome data that would inform appraisal of the drugs by The National Institute for Health and Care Excellence (Nice), which decides which treatments should be available on the NHS in England and Wales.

The News & Star pressed NHS England for further details but was told it could not be more specific at this stage.

Meanwhile, Simon Lem, Vertex's Northern Europe vice president, said their proposals offered “significant discounts of tens of thousands of pounds” below the list price of £104,000 per patient, per year for Orkambi.

An interim access deal to provide immediate access to eligible patients to Orkambi - on similar terms to those accepted in Scotland - was another offer, he said.

He added that any agreement must recognise the value of precision medicines and the substantial investment madev in developing them. "It cannot jeopardise Vertex’s ability to deliver on its mission of developing future innovations for the treatment of CF and other rare diseases,” said Mr Lem.

In a statement Vertex said: “We appreciate that NHSE has recently submitted to us a revised proposal...We note however that their offer reflects the same annual spend on our CF medicines as their July 2018 offer.”

The NHS offered £500m over five years for access to Orkambi and other CF drugs, insisting this was its "best possible" offer. Vertex reject the offer and criticised the way new drugs are appraised in the UK.