Protestors lie down in Parliament Square yesterday in protest (Image: Time Clarke)
In Parliament Square in London, protesters in Daily Express yellow T-shirts represented the 255 CF sufferers who have died in the three-and-a-half years that pharmaceutical manufacturer Vertex’s wonder drug Orkambi could have been available. Tory MP Andrew Griffiths was so moved by the LayDown4CF rally he raced to the House of Commons to raise a point of order to highlight the protest. Meanwhile, sufferer Louise Darcy, six, from Wolverhampton, was among many who lay down in homes, gardens, parks and offices to demand action.
The yellow protest – the colour of CF campaigns – was the brainchild of Sharon Cranfield and Alison Dillon.
Alison, mum to TV-actor son Oli, 21, told us: “My boy is poorly again and needs Orkambi now. While NHS England, NICE and Vertex mess about, adults and children are deteriorating – when Orkambi would stop that happening.
“Our loved ones with CF cannot be here, as CF patients cannot meet due to the risk of cross-contamination of bugs they carry in their lungs.
“Instead we are all here for them and to tell MPs ready for their summer recess ‘We are not going away, so sort this now.’”
Sharon, 54, the mother of 18-year-old Jessica – the only CF-sufferer at the protest – said: “This has been a hugely emotional day for all of us. We are not only asking for Orkambi and a deal to be struck but also to remember the 255 sufferers who have passed away needing and