A DETERMINED father who is campaigning for a vital drug to be made available on the NHS has thanked the people of Carlisle and Cumbria for bringing that a step closer to reality.

Dave Louden’s three-year-old daughter Ayda suffers from cystic fibrosis and is one of thousands of patients across the UK whose lives could be changed by Orkambi - a licensed drug that is deemed too expensive for NHS funding.

The drug’s manufacturer, Vertex Pharmaceuticals, and the Department of Health were at an impasse but have now agreed to resume talks in a bid to reach a deal.

Dave, 34, of Sandsfield Park, Carlisle, believes if it wasn’t for his daughter’s story and the fight for Orkambi being higthlighted in The Cumberland News, the two sides may not have re-engaged.

This coverage, on February 1, led to a surge of interest by the national media and 20,000 more signatures on the petition, with Carlisle counting for a significantly higher percentage than anywhere else in the country.

“It wouldn’t have happened without the people of Carlisle, Cumbria and the surrounding areas.

“It’s the people of Cumbria that have got the Government and Vertex back in the room ultimately,” said Dave.

“It has put additional pressure on both sides and leaves them without an excuse. They are running out of places to hide.”

Sufferers currently take about 20 tablets a day but these medicines only target the symptoms of cystic fibrosis. Orkambi and other drugs produced by Vertex, including Symkevi, tackle the underlying genetic defects that cause the condition.

They have been found to slow decline in lung function by up to 42 per cent – the most common cause of death for people with cystic fibrosis - and reduce chest infections requiring hospital treatment by up to 61 per cent.

At £104,000 per patient, per year, experts at the National Institute for Health and Care Excellence (NICE) have said incremental cost-effectiveness ratios were “considerably higher” than what is considered a cost-effective use of NHS resources.

But if Ayda were able to access this vital treatment is could add years onto her life.

Dave said: “A lot of stress, anxiety and worry would be lifted.

“It would make a huge difference to Ayda’s life.

“It will ultimately keep her lungs healthy so she could possibly survive long enough for a cure.

“Without these drugs, Ayda could get a really bad infection tomorrow and lose a massive amount of lung function that she’s never going to get back.”

The NHS has offered £500m over five years for Orkambi and other precision medicines. The deal also includes the renegotiation of the contract for another drug, Kalydeco, which is available on the NHS but can only treat about five per cent of suffers. It’s expected the majority of those taking Kalydeco could move onto one of the new triple therapies.

A spokesman for the Department of Health said: “Despite being offered the largest ever commitment of its kind in the 70-year history of the NHS - Vertex has refused to accept, putting Orkambi out of reach of patients.

“We have been urging Vertex to re-engage with the NICE process and we welcome reports that they are now willing to come back to the table.”

The Health Secretary, NICE and NHS England, will meet with Vertex representatives to explain why the deal is the best possible, is profitable for them, and will save lives.

“We are clear that patients should have access to cost-effective, innovative medicines on the NHS at a price we can afford – and we strongly urge Vertex to accept NHS England’s generous offer,” added the spokesman.

Rebecca Hunt, vice president of international corporate affairs for Vertex, said the company remained committed to finding a solution and welcomed the Health Secretary’s agreement to meet.

She said: “We have always been willing to meet any time, any place, to ensure patient access to our portfolio of cystic fibrosis medicines.”

Dave hopes these talks will finally lead to an agreement but thinks the two sides need to bring fresh ideas to the table.

“Hopefully this time it will be something different, it will be a real shame if there wasn’t,” he said. “It needs the people at the highest level. The decision makers need to be in the room.”

The Commons Health Select Committee is investigating the situation and has announced a public hearing on March 7. Dave is also urging people locally to make representations.

Sign the petition here.