How can firm deny my sick boy drugs that will save his life?
A MOTHER has shared a harrowing hospital photograph of her sick fiveyear-old boy to urge the Government to seal a cystic fibrosis drug deal.
For more than a year US drug firm Vertex has stalled over an £108million-a-year offer from NHS England for its cystic fibrosis treatments such as Orkambi.
Next week Health Secretary Matt Hancock has a crunch meeting with Vertex’s chief executive officer Dr Jeff Leiden to discuss a deal.
Claire Wilson, 40, has stressed how the delays are causing irreversible lung and organ damage to sufferers such as her son Rufus.
When Rufus first pleaded for Orkambi in the Daily Express in February he was fit and healthy and had only ever had one hospital visit.
Claire has tweeted Mr Hancock an image of Rufus now struggling in hospital with the lung bug “haemophilus influenzae”.
The mother-of-three from Westonsuper-Mare, Somerset, wrote: “This should be a new start of term in Year One, Matt Hancock.
“Instead a fortnight of IVs (intravenous antibiotics) in hospital and waiting for lab results. Damage already being done to my precious boy. YOU can stop this.”
Rufus is having 14 days of IVs after having a tube put into an arm vein.
Claire and husband Scott, 43, have been campaigning for Orkambi for three years since it came on the UK market. It “stops the clock’ on deterioration, until a cure is found.
Claire told us: “Poor Rufus has only been at school for three weeks this term but is now stuck in hospital.
“He misses his family and his friends. He started crying the other day as he just wants to go home now.
“He seems like a normal healthy boy but his CF is hidden. Mucus clogs his lungs and organs. It is heartbreaking to see him suffer when there are drugs that could instantly make him feel a hell of a lot better.”
The Daily Express has been crusading for NHS England (NHSE) to strike a deal with Vertex for the CF wonder drugs.
Since Orkambi has been licensed but unavailable here, it is feared 270 sufferers have died needlessly.
Two weeks ago Scotland agreed a discounted deal with Vertex but patients in Northern Ireland, England andWales are still missing out.
NHS England has dismissed replicating Scotland’s deal.