Vertex boast is a ‘kick in teeth’ to victims’ parents
PARENTS of cystic fibrosis children victims were angered yesterday when US giant Vertex boasted about the success of trials on their drugs, which are denied to victims in England.
The company said results were an “important milestone” in treatment. Families were also infuriated by a tweet from Vertex – to celebrate National Caregivers Day in the US – which said: “At the centre of caring is love, a force that drives us to go above and beyond for others.”
Health Secretary Matt Hancock resumed talks with Vertex over a deal for Orkambi this week, after the Daily Express spoke to both parties over their seven-month stalemate.
A £500million offer to buy a portfolio of drugs has been rebuffed
Vertex said the latest results of the new Triple Therapy wonder drug which is included in the deal, demonstrated a “statistically significant improvement” in lung function among patients.
Chief medical officer Dr Reshma Kewalramani said:
“This data marks an important milestone in our efforts to expand treatment options for patients living with CF.”
He added it brings “us a step closer to potentially providing more children with a treatment option that addresses the underlying cause of the disease”.
Less than 10 per cent of those in the “phase three” trial experienced adverse effects such as coughs or headaches. Vertex claim no one suffered any serious adverse events.
But the announcement sparked fury among CF campaigners in England.
One mother wrote: “Great stuff but a kick in the teeth for those who are unable to access these drugs.
“We put our seven year-old daughter forward for these trials – our only hope for accessing these drugs being the lottery of a name out of a hat.”
Jeni Beviere – mother of Josh, 12, who is having intravenous antibiotics for his latest CF-related lung infection – tweeted the firm: “We can’t afford your prices!” Mrs Beviere, 42, of Tunbridge Wells, Kent, and other parents have been urging for Vertex to return to the negotiating table.
And tweeter Adrian McGuinness asked the US drugs giant: “Are you cruelly taunting cystic fibrosis sufferers in the UK?”
The Daily Express has been reporting day-after-day the rigid stalemate between UK health chiefs and Vertex, that has been agonisingly rumbling on with no end in sight.
NHS England stress they want to do a deal with Vertex, but added: “Vertex are an extreme outlier in both their pricing and behaviour.” Rebecca Hunt, Vertex’s Vice-President of Corporate Affairs, said: “We are not walking away from the UK and are absolutely committed to finding a solution.
“We want to work in partnership with NHS England and NICE to get there and we very much hope we will.”
In an interview with the Daily Express, she justified Vertex’s two year’s of huge profits – raking in £2.41billion in 2018 alone. Arguing the case for the high price of the company’s life-saving drugs, she claimed up until they hit profit two years ago they had posted net loses totalling $5.1billion (£4billion) while investing $11.3bn (£8.7billion) into research and development since 2000.
Vertex have recently ironed out an agreement for their drugs in Scotland, and already supply Orkambi, pictured, to nine countries, including US, Ireland and Germany. The company is also the world’s main developer of CF drugs. Of the 70,000 people worldwide with CF, around 10,400 are in the UK.
NHS England’s offer – worth £108million-a-year – was for Orkambi, Kalydeco, Symdeko and the Triple Therapy drug under development.
The Triple Therapy is a combination of Kalydeco, Tezacaftor and a third drug which could potentially help 7,000 of the CF patients in the UK.