American firm ‘refusing’ price for life-saving drug
Fear of all those coughs and colds at school is a nightmare
RUFUS Wilson, four, idolises powerful Marvel superhero The Hulk – but without Orkambi he will get weaker.
His parents Claire, 40, and Scott Wilson, 43, were told Rufus had cystic fibrosis when he was two weeks old.
Now Rufus, of Weston-super-Mare, endures a rigorous routine of 22 tablets and two physiotherapy sessions daily.
But he is the healthiest he will ever be – unless he can have Orkambi. Motherof-three Claire said: “We found out Rufus had CF when two health visitors came to our house out of the blue. have campaigned for Orkambi for three years, since it came onto the market.
They sat in the gallery at the last debate in Parliament in March 2018.
Each day Rufus does two nebulisers – which turn medicine into an inhalable mist – and two sessions of lengthy physio. He will have to have even more tablets as he gets older if he cannot have Orkambi.
His parents know his health and lung function will never be better than now.
Orkambi “stops the clock” on deterioration so the sooner he gets it the better his long-term health.
Claire explained: “At present he is a beautiful, bright little boy who can give so much to society as he grows up.
“If he’s well, who knows what he’ll go on to achieve? He will be able to earn and pay back to the system rather than taking from it with me caring for him.
“How can the Government not want to help him and thousands more and stop his lungs and digestive system clogging up? I dread the day I tell him ‘the drugs are out there, but you can’t afford them’.” NHS in England, Wales and Northern Ireland.
Newer drug Symkevi has also been withdrawn from NICE’s process.
But as Vertex is the only firm researching a cure for CF, some UK families feel NHS England has not offered it a good enough deal.
NHS England is urging Vertex to “re-engage” with it and NICE.
Health Secretary Matt Hancock has vowed not to “let big pharmaceutical companies hold the NHS to ransom”.
He said the offer was “incredibly generous” and added: “They need to accept the deal.”
Some MPs want to use 1977 legislation – “Crown use licensing” – to override Vertex’s patents on Orkambi and let others make a cheaper version. But the fear is that it would make Vertex unwilling to