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Eliza Turner, five, is desperate for wonder drug Orkambi, but neither England, Wales, nor Northern Ireland has a deal with its maker, US firm Vertex. The drugs are available in Ireland and, as of last month, Scotland, prompting the Turners to plan their move from Sheffield, where they have lived all their lives. The Daily Express is battling for an urgent NHS deal with Vertex for its medicines like Orkambi and Symkevi.
It is feared more than 270 adults and children have died needlessly since Orkambi has been licensed, but unavailable in the UK.
Eliza’s mother Rachel, 33, said yesterday: “It is unthinkable that a UK postcode health lottery decides our children’s futures.
“We have been up to Scotland to look at homes and hospitals for Eliza. We will have to leave all our friends and family behind, but what choice do we have?” Rachel’s husband, Royal Mail manager Phil, 40, said: “If someone with CF is lucky, they might live to their mid-30s or 40s.That’s half a life as far as I’m concerned.
“This drug could increase Eliza’s life expectancy by up to 20 years. But she needs to start her treatment as soon as possible.”
A move to Scotland will cause huge upheaval, not only for Eliza, but her brother Henry, four.
The family’s MP, Gill Furniss, said: “If it’s good enough for Scotland, I just feel we have to do the same for people in the rest of the UK.”
Vertex CEO Dr Jeff Leiden held talks with Health Secretary Matt Hancock in London this week, over a possible deal.
Mr Hancock, who paid tribute to the Express for “an amazing campaign”, said the meeting was “positive and constructive”.
He added: “I can’t make any promises yet, but the teams are working to try to keep this moving forward.”
After the meeting, Vertex sources said they hoped to “negotiate this to a formal agreement within weeks”.
The Express understands Vertex will shortly hold separate meetings with health chiefs in Northern Ireland and Wales.
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