The plan is for 255 campaigners to lie down outside Westminster at 1pm for an hour. The total reflects the number of CF sufferers who have died in the three-and-a-half years since the row began, when they could have been helped by the Vertex product Orkambi. Each protester will wear a yellow T-shirt, the colour of CF awareness, featuring a Daily Express front page story supporting their campaign. Many of the UK’s 10,500 CF sufferers will also live stream their own protests from their homes.

The Westminster demo is the brainchild of mothers Alison Dillon and Sharon Cranfield.

Yesterday Alison, whose CF son Oli, 21, is a TV actor, said: “For years Vertex and the NHS have half-heartedly haggled over this deal. In that time CF sufferers have deteriorated and some have even tragically died.

“It is nothing more than a national scandal and a disgrace.

“Soon MPs will jet off on their holidays to enjoy their summer recess – yet our loved-ones will still be waiting for life-saving drugs. So we wanted a peaceful protest that would grab MPs’ attention. The sight of so many people laying down right by Parliament will be a graphic image of the CF community’s loss.”

She added: “Thank you so much to the Daily Express for donating all the yellow T-shirts. We just hope the public come along to watch what will be a very emotional and hard-hitting event.”

Sharon, 53, mother of CF-sufferer Jessica, 18, said: “We are hopeful that many MPs will come down to lend us their support.

“We hope it will be a thought-provoking demonstration.”

Yesterday Health Secretary Matt Hancock, who last week met CF campaigner Carlie Pleasant, again pledged to do his best for a deal.

Vertex has said it wants to reach an agreement with NHS England.

But it says the £108million a year being offered for Orkambi and other CF drugs is too low to cover its research costs.

Meeting Health Secretary was motivating…but tiring

In her diary this week, cystic fibrosis-sufferer Carlie Pleasant reveals how her historic meeting with Health Secretary Matt Hancock left her physically drained. The married mother-ofone, 29, of Sittingbourne, Kent, says it had a huge impact on her – and other sufferers.

“LAST week I travelled to King’s College Hospital, not just for my usual CF clinic but for the opportunity to meet the Health Secretary. I had a preconceived idea of how it would go. I expected him to arrive with a list of prepared, generic answers but I could not have been more wrong. It was fulfilling and motivating.

“The whole CF community has taken hope from that meeting and we wait in anticipation to see if Mr Hancock will follow through with his word.

“After we met, he addressed the CF community on Twitter, telling them, ‘Be assured we’re on this and committed to achieving a resolution for all those battling CF across the UK #OrkambiNow’.

“So please Mr Hancock, don’t let us down and thank you for meeting me and giving the fight for CF drugs serious publicity. “At my CF appointment an overview of my past year showed I had had more admissions and oral antibiotics than the previous year. However, this is inevitable with a progressive disease.

“Since starting steroids I’ve increased my lung function from 60 to 75 per cent which has made life much easier. I am suffering from fatigue this week but that is to be expected. It’s been so busy!

“Thanks to the Daily Express and their readers we have taken a huge step forward with our campaign and we are all extremely grateful.”

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