EXCLUSIVE: Theresa May last night urged US makers of a drug that prolongs life for cystic fibrosis sufferers to make it available on the NHS.
Her call came as Zoey Jones and her one-year-old daughter Eve, pictured, who has CF, went to Downing Street with other campaigners yesterday to plead for the Prime Minister’s help. The US drug company Vertex has been in dispute with the health service over the cost at which it is prepared to supply the vital drug Orkambi. Mrs May now wants the firm to break the deadlock in new talks, telling them to “do everything they can” to make the drug available for free.
Exactly 12 months ago, Theresa May told MPs in the House of Commons that she had sought a “speedy resolution” to the funding row.
But a year later a deal has still not been done while 70 sufferers have since died without getting access to Orkambi.
Zoey and Eve Jones delivered a bouquet to 10 Downing Street to get their message across.
They handed it in with the words: “Here are 65 yellow roses as a reminder of this day last year when you said you’d ensure a ‘speedy resolution’ for access to cystic fibrosis medicines.”
The flowers have become an icon for the campaigners after children with CF mispronounced the condition as “65 roses”. Last night Mrs May responded to the campaign in a statement to the Daily Express.
She said: “CF is a devastating, life-limiting condition and the bravery of those affected – including Eve – should be an inspiration to us all.
“I urge Vertex to do everything they can, working with NHS England and NICE, to make these drugs available. I am pleased discussions have resumed and hope to see swift progress. Only through resolving this dispute will we be able to provide access to this crucial treatment.”
Her statement will provide increased hope of a deal between the health authorities and Vertex after talks resumed earlier this year.
Campaigners say the continued delay in getting Orkambi to the UK’s 10,500 CF victims is costing lives, with around 240 sufferers dying since the funding dispute began three-and-half years ago.
Conservative MP Crispin Blunt said: “A year later and those affected by cystic fibrosis go on. How much longer will it take?” Marathon runner Natalie Crawford, 36, of Northampton, who has CF, said: “We’ve already waited and lost so many loved ones.
“Seventy CF angels since Mrs May’s speech is 70 too many and we continue to mourn for those not given the chance of a future because of money.
“In the past month I have lost two close friends who were waiting for Orkambi.
“We all deserve a future without a price tag putting it out of our reach. We need action now.” CF patient Carlie Pleasant, 29, said: “The fact that for some the fight became too much of a battle and they lost their lives sickens me.
“It also terrifies me that CF will get to me before Orkambi does.”
David Turner QC, whose daughter has CF, said: “Every day without a resolution means people suffer avoidable but irreparable lung and organ damage.
“That means they have a lower quality of life and die younger than they need to. Neither the government, nor the NHS, nor NICE (the body which licences drugs for NHS use) nor Vertex seem to understand the extreme urgency. They are literally fiddling while patients suffer and die.”
The Daily Express has been crusading for NHS England to strike a deal with Vertex for Orkambi and other drugs they have in the pipeline.
The firm refused the NHS’s £500million offer last July and withdrew from the NICE drug approval process.
But after the launch of the Daily Express crusade all three sides have now returned to the negotiating table for their first talks in eight months.
NHS England’s rebuffed bid to Vertex was for Orkambi, Kalydeco, Symdeko and a super “triple therapy” drug still being trialled.
So far all parties have agreed to negotiate in secret without issuing statements, to avoid last year’s public fallout over the snubbed £500million offer.
The Daily Express has backed a campaigners’ petition demanding MPs discuss the issue.
Last month it hit its 100,000 target and there will now be a full Commons debate on Monday, June 10.
Boston-based Vertex, run by Dr Jeff Leiden, said yesterday it “remains committed to finding a solution”. It added: “We continue to meet with NHS England in the hope of achieving this shared goal through an agreement that is acceptable to all parties.”
The Department of Health said: “We want all patients to have access to the best medicines at a price the NHS can afford.
“NHS England will meet with Vertex again soon to identify ways of getting this treatment to those who need it as soon as possible.”