Outcry at huge drug profits
ANGER was growing last night at the US drugs giant locked in a funding dispute with the NHS over life-extending cystic fibrosis medication.
This week, the Daily Express has been recounting the heartbreaking stories of brave children – like fouryear-old Harriet Corr – who desperately need the drug, called Orkambi, to stay alive.
Two Orkambi tablets taken twice daily can add on average 23 years of life – but the drug is not available in England, Wales or Northern Ireland.
Last year, the NHS and National Institute for Health and Care Excellence saw their £500million five-year offer rebuffed by Boston-based Vertex Pharmaceuticals.
The NHS has offered Vertex an estimated £20,000-a-year per patient, but the US giant wants £105,000 per person.
It has now emerged that Vertex’s revenues for last year were about £2.3billion, an increase of 40 per cent compared with 2017.
Meanwhile, in the three years Vertex’s Orkambi could have been available to UK families, it is estimated up to 220 cystic fibrosis sufferers may have died.
Last night, there was anger that people are needlessly dying while the funding dispute with Vertex rumbles on.
Former Tory minister Sir Mike Penning said: “It is a disgrace that Vertex cannot come to a deal with the NHS to supply this vital drug that can do so much to extend the lives of young people. Of course, the company needs to make a profit but the price it is currently asking is unrealistic.
“Come on guys, get real. “Vertex has done deals to supply countries across Europe, including cash-strapped Greece, so I cannot comprehend why it cannot come to a deal with the NHS.
“It needs to come to the table and agree a deal that is fair to shareholders, to taxpayers and, most importantly, to the young people who need the drug to extend lives that can be so tragically short.”
Harriet’s devoted family last night told the Daily Express they are now considering quitting England for Scotland, where the government has recently struck a caseby-case deal with Vertex for Orkambi.
Harriet’s mother Emma said: “I’m not a politician – I just want to save my daughter’s life.”
Emma, 38, from Jarrow, Northumberland, knows that just 70 miles north she could access the vital drug.
The English teacher told us: “The fault for this lies with all three main parties – Vertex, Nice and NHS England.
“If the drug was made available here, there would be potentially thousands who would stand to benefit. They are all being completely ignored.
“It’s a huge dilemma – why should we have to uproot our entire lives?” Emma has to care for her daughter with a “cocktail” of tablets and vitamins, as well as intense physio sessions on a daily basis.
Harriet has to take up to 16 tablets a day to ensure she can take on nutrients from her food, and endures physiotherapy to clear the PARENTS of children affected by cystic fibrosis are urging people to sign a petition calling on the NHS to supply new mucus. The Corr family believe Orkambi will help Harriet enjoy a “normal life”.
Now, the UK’s 10,400 cystic fibrosis-affected families have joined in a petition to call for Vertex and the NHS to agree a deal to save children’s lives. As of yesterday, the life-saving drugs. By last night nearly 50,000 people had taken part. Join the petition by signing at... petition – which can be found on the Daily Express website – had been signed by more than 50,000 people.
If it gets 100,000 names, the petition – urging the NHS to supply Orkambi for free in the UK – will be considered for debate in Parliament.
The frustrating impasse on Orkambi has led to the Health and Social Care Committee launching an inquiry, to sit on March 7.
The Department of Health and Social Care said: “Despite being offered £500million over five years, the largest ever commitment in the history of the NHS, Vertex refused to accept, putting Orkambi out of reach.”
A NICE spokesman said: “We are still very keen for the company to engage with us but as it stands they are not doing that.”
A spokesman from Vertex said: “Out of respect for the parliamentary process, we will not be providing further updates at this time.
“Vertex welcomes the committee’s interest in access to cystic fibrosis medicines and we look forward to continuing to support its inquiry into this important issue.”