Fury over delay to talks on cystic fibrosis wonder drug

FAMILIES calling for life-saving cystic fibrosis drugs to be available on the NHS were furious last night as crucial talks were put back to March 11.

Last week the Daily Express revealed that US pharmaceutical giant Vertex and Health Secretary Matt Hancock had agreed to meet after a seven-month hiatus.

Sufferers have been in limbo since Vertex rebuffed a £500millionplus NHS England offer for their portfolio of current and future CF drugs, including Orkambi.

During the three years Orkambi has been unavailable on the NHS, it is feared that up to 220 CF sufferers could have died.

The meeting is now pencilled in four days after a March 7 Health and Social Care Committee hearing into Orkambi.

Last night Labour’s shadow health secretary Jon Ashworth said: “Children need that drug as a matter of urgency.

“We have had enough dragging of feet – Vertex must get round the table as soon as possible with ministers. Waiting until after the select committee report is simply unacceptable.”

Nick Medhurst, head of policy and public affairs at the Cystic Fibrosis Trust, said: “All parties have consistently claimed that they are ready to make the time for constructive dialogue. We would be extremely disappointed if any party were to unnecessarily delay vital talks.”

Jeni Beviere, 42, mother of sufferer Josh, 12, said: “It’s absolutely disgusting. We are obviously not a priority. Vertex simply don’t care.

“Why is our government not insisting on immediate discussions? Their drugs are too important to our CF kids.”

Alison Fare, mother of CF sisters Imogen, six, and three-year-old Annabelle, added: “Vertex say they’re working day and night on getting access in the UK.

“But after three years it’s imperative progress is made quickly – especially for all those who really need Orkambi now.

“I’m really frustrated that there will be no meeting until after the Health and Social Care Committee inquiry.”

Campaigner Jen Banks, 34 – mother of two-year-old son Lorcan who has CF – said: “By failing to meet earlier, both parties are willing to risk lives.

“It is more than disappointing, it is heartbreaking. An earlier meeting could mean so much to so many.

“I will go to bed with a heavier heart tonight.”

Leanne Olney, mother of 13-month-old Walter, added: “Vertex must be too busy counting all their money. They say they are absolutely committed to finding a solution but clearly they are in no hurry.

“How many more have to die waiting for this to be resolved?”

Mr Hancock had demanded a face-to-face meeting with senior executives from the pharmaceutical giant “as soon as possible”.

But Whitehall sources say the firm responded by insisting March 11 was the earliest date it could arrange.

A Whitehall insider said: “The Secretary of State asked for a meeting ASAP. March 11 doesn’t exactly feel like ASAP.”

A Department of Health spokesman added: “We’re keen to find a solution as soon as possible so if Vertex are able to meet earlier we would welcome that.” Initially when asked for an update on the meeting Rebecca Hunt, Vertex’s vice-president of corporate affairs, said: “We have always been willing to meet.

“We welcome the Secretary of State for Health’s agreement to meet, and remain committed to finding a solution going forward.”

When it was revealed that Vertex was being blamed for setting such a distant date in the future, Ms Hunt added: “We have been seeking a meeting with the Secretary of State for Health and Social Care since July last year.

“We are pleased that Mr Hancock has agreed to meet and that a date has now been fixed the earliest possible date that both parties can make.”