SUFFERERS need action not words when it comes to resolving a long-running dispute over the cost of a life-saving cystic fibrosis drug.

While Prime Minister Theresa May has urged Vertex Pharmaceuticals to “do everything” possible to provide Orkambi to the NHS, Carlisle campaigner Dave Louden thinks she should instead use her powers to take action to ensure a resolution is achieved - something sought 12 months ago.

Mrs May made the call after a toddler suffering with the illness delivered 65 yellow roses - each wrapped in a letter from a patient suffering from cystic fibrosis - to Downing Street in a plea for the drug to be made available.

Mr Louden’s four-year-old daughter Ayda is among those whose lives could be changed by precision medicines such as Orkambi and he is desperate for an agreement to be reached.

“It is brilliant that she is supporting it and saying these drugs should be here but it would be even better if she could be a bit more aggressive and take a bit more action,” he said.

“The thing that everybody is forgetting is the longer it takes, the more people are without these drugs and the more people are getting irreversible lung damage. Ultimately it has taken nearly four years and 240 people have died in that time waiting for these drugs.”

Reports suggest that in the 12 months since the Prime Minister last spoke about a “speedy resolution” on the issue, 70 suffers have died without getting access to Orkambi.

Following the powerful message from one-year-old Eve Jones from Chester on Thursday, Mrs May said in a statement: “Cystic fibrosis is a devastating, life-limiting condition, and the bravery of those affected - including Eve and her family - should be an inspiration to us all.

“I urge Vertex to do everything they can, working with NHS England and National Institute for Health and Care Excellence, to make these drugs available.

“I am pleased discussions have resumed and hope to see swift progress - as only through resolving this dispute will we be able to provide access to this crucial treatment.”

Orkambi, which is suitable for about half of those with cystic fibrosis, costs £104,000 per patient per year and the drug must be taken for life.

Other drugs being developed by the firm are showing astonishing results in clinical trials and could potentially treat most sufferers.

The NHS has offered £500m over five years for access to Orkambi and other cystic fibrosis drugs made by Vertex, with the promise of renewals in the future. This has been rejected by Vertex which has secured deals with other countries for access to Orkambi and has criticised the way new drugs are appraised in the UK.

But the Department of Health and Social Care has insisted this was the "best possible” offer.

Vertex is understood to have offered to reduce its list price, though Nice has said the company would need to cut this by 90 per cent in order for it to be approved on the NHS.