10 weeks of dithering over NHS drug talks ‘has cost 14 lives’
CYSTIC fibrosis families yesterday blasted the 10-week delay in crunch drug talks that could have cost 14 lives.
For more than a year US drug firm Vertex has stalled over a £108million-ayear NHS England offer for their CF wonder medicines such as Orkambi.
On August 6, Health Secretary Matt Hancock wrote to Vertex chief Dr Jeffrey Leiden to ask for an urgent meeting to discuss the need for a deal.
Dr Leiden vowed to the Daily Express he would clear his diary.
But we can reveal they will not be meet until the second week in October – 10 weeks after they agreed to talk.
We estimate during that time 14 CF sufferers in need of Orkambi will needlessly have died. Daily Express columnist Carlie Pleasant, 29, who has CF, had her own meeting Dr Leiden a fortnight ago.
The married mum-of-one, said: “It will be over two months since they announced plans to meet to the moment they actually do.
“During this time I would have taken approximately 4,200 tablets, completed 240 nebulisers and spent around 180 hours doing physiotherapy. I would also have had six hospital appointments. For me and all other CF-ers, time is key.
“It is a devastatingly sad fact that in this time people have lost their lives to CF. The pair should have that on their conscious but it appears urgency is simply not their agenda.”
Campaigner Alison Dillon – mum to CF-suffering TV actor Oli, 21 – told us: “Waiting 10 weeks for two people to with Dr Leiden promised to clear his diary Matt Hancock wanted urgent meetings talk is a disgrace. They seem to forget innocent people are dying.”
While Scotland this month celebrated securing a deal with Vertex, there is an agonising stalemate in talks for the rest of the UK. Since Orkambi has been licensed but unavailable here, we estimate 269 adults and children have died.
Dr Leiden has snubbed requests for an interview. We have been crusading for NHS England to strike a deal with Vertex for their pipeline of CF lifesaving drugs.The offer of £108million a year was snubbed for being too low.
Two weeks ago the Scottish government agreed a discounted deal on the £104,000-a-year per-patient pills.