Deal closer on cystic fibrosis wonder drug
‘We will work with all parties to make our lifechanging medicines available to people with CF in England’
A HISTORIC deal for UK cystic fibrosis sufferers to get life-saving drugs is a step closer after “constructive” talks took place yesterday.
The Daily Express has been campaigning for the NHS to strike a deal with US firm Vertex for its pipeline of wonder drugs, including Orkambi.
Until we urged Vertex CEO Dr Jeff Leiden and Health Secretary Matt Hancock to meet face-toface, neither side had been speaking for eight months.
After an hour-long meeting, Mr Hancock left hailing positive talks with new ideas being put forward.
He told the Daily Express: “We had a constructive meeting to identify ways of breaking the current impasse so we can get this treatment to those who desperately need it.
“Vertex, NHS England and [drugs assessor] Nice have agreed to meet again next week to continue dis- cussions and to decide the next steps.”
Vertex’s vice-president of corporate affairs, Rebecca Hunt, confirmed the next meeting.
She told us: “Jeff Leiden had a constructive discus- sion. We are grateful to the Secretary of State for his leadership on this matter.
“We are committed to working with all parties to make our potentially lifechanging medicines available to people living with CF in England as quickly as possible.”
CF campaigners last night cautiously welcomed the news. Carlie Pleasant, 29, said: “This is the closest I have ever been to allowing myself to believe that my life may not be determined by CF.”
Sharon Cranfield, 53, whose daughter Jessica, 17, was granted Orkambi after she fell gravely ill, said: “We are all so nervous, I could not sleep last night.
“I’m glad they have not made public any aspects of negotiations and are meeting again. This is more than we could have asked for.”
Earlier the CF Trust’s CEO David Ramsden met Dr Leiden to “urge them to find a way to deliver lifesaving drugs now”.
A petition, demanding NHS England negotiate an urgent deal with Vertex, has so far been signed by more than 75,900 people.
If it hits 100,000 names then it forces a full debate in Parliament on the issue.
Vertex is the world’s main developer of CF drugs. Of the 70,000 people worldwide with CF, 10,400, or 12 per cent, are in the UK.
NHS England and Mr Hancock have insisted the £500million over five years offer for Vertex’s current and future drugs, including Orkambi, is the “best possible”.
Last week Dr Leiden told the health select committee that his firm would fold if it accepted the offer.
On Saturday, in a letter to Daily Express readers, he wrote: “England has a unique challenge due to the high prevalence of CF here.
“I will not rest until we get all patients, everywhere, access to the best medicines we can possibly deliver.”