THE Cystic Fibrosis Trust will continue to work with the NHS and Vertex Pharmaceuticals after talks to make ground-breaking new precision medicines available on the NHS appeared to reach an impasse.

It was deeply disappointing for Trust campaigners who spent a day in London last month petitioning both parties over the use of drugs such as orkambi, which they believe could prolong the lives of people with cystic fibrosis.

Only available on the NHS on compassionate grounds, orkambi currently costs £100,000 per year for each patient and is considered too expensive for general use.

Following the initial breakdown of talks, a Vertex spokesman said on July 4 that it had made “the best offer in the world to NHS England” - “at a price reflective of the exceptionally high prevalence of cystic fibrosis in the UK” and “reflecting our ultimate goal to provide access to all of our medicines for all cystic fibrosis patients as soon as possible”.

This would include drugs such as orkambi, as well as future medicines still being developed, which it is hoped may treat as many as 90 per cent of all cystic fibrosis patients.

The statement continued: “Our offer also provides budget certainty to NHS England and assurance that patients will have rapid access to advances in medicines soon to come, just like agreements made in other countries.

“We find it outrageous that NHS England does not see a path forward to provide access for thousands of children and young people to the only medicines that treat the underlying cause of cystic fibrosis.

“We call on the Government to intervene to ensure that cystic fibrosis patients in England have access to the medicines that exist now as well as the advances soon to come. We stand ready to meet any time, any place to ensure patient get access to these life-changing and transformative medicines. Patients do not have time to wait and we share their urgency.”

Jeff Leiden, chairman, chief executive and president of Vertex Pharmaceuticals, has since written to Prime Minister Theresa May urging her to intervene.

“I stand ready to meet with you to discuss how we can work together on behalf of people with cystic fibrosis to fulfil the Government’s stated ambition for NHS patients to be ‘among the first in the world to get life-changing treatments’.”

Following the talks, a spokesman for NHS England said: “This country has a long established, internationally respected independent body - NICE - which recommends whether or not a drug company is proposing a fair price. NICE has been clear that Vertex’s pricing is unsupportable.

“If Vertex really believe they are offering a reasonable deal then they should waive their confidentiality clause and let patients and taxpayers judge whether it is fair.”

Cystic Fibrosis Trust chief executive David Ramsden has urged supporters not to lose heart but to cling onto the fact that neither side has given up in the negotiations and, while a deal may not be imminent, he does not believe the talks have irrevocably broken down.

He told Cystic Fibrosis Trust members: “Our focus at the Trust remains on working with all sides to ensure a deal gets done. We are continuing to pressure both parties and ensure they know we won’t stop until we get there.”