Tunbridge Wells mum takes on drug company over life-extending cystic fibrosis drug
21st February 2019
THE mother of a Tunbridge Wells boy suffering from a debilitating lung disease is battling to persuade the government and a US drug company to come to an agreement over a life-extending medicine.
Vertex produce a ‘pipeline’ of cystic fibrosis drugs, including the life-extending, Orkambi, which they want to charge the health service £105,000 a year for each patient taking the medicine.
The company has rejected a half a billion pound deal offered by the NHS—the largest of its kind in the health service’s history.
Jeni Beviere from Pembury, whose 12-year-old son suffers from the condition, has formed a campaign group #UKNeedsOrkambi to try to push politicians and Vertex to come to an agreement and get the drug licensed as soon as possible, following a seven month stalemate.
Cystic fibrosis effects about 10,000 people in the UK, and prevents the lungs from expelling mucus and phlegm, which has left Jeni’s son, Josh, requiring a ‘cocktail’ of up to 40 tablets a day, including around 10 antibiotics as well as nebulizers and vitamins.
“The drugs he takes now just treat the problems caused by cystic fibrosis,” Mrs Beviere explained to the Times. “Orkambi, can stop the clock on the disease.”
She said that the drug could add about 20 years to the life of sufferers, many of whom never make it past their 30s, but talks between Vertex and the NHS broke down in August when the drug giant refused the £500million offer.
“They do not want to negotiate because they have a monopoly,” she Mrs Beviere. “The patent for this drug lasts 20 years so they know the NHS cannot get this drug anywhere else.”
She admits that drug companies do have large research and development bills but is saddened by the breakdown in talks between Health Secretary, Matt Hancock, and the Vertex board.
“They just need to come to the table now and agree a deal. We cannot wait another three years,” warned Mrs Beviere.
She said her son has just undergone a lengthy hospital stay, which included two and half hours of physiotherapy each day.
“I know it is a lot of money for a single drug, but it is not when you consider how much Josh’s treatment has already cost—and he is one of the healthier ones.”
Now, Jeni hopes to get 100,000 signatures on a petition that will force parliament to look at the issue.
If all else fails, the 42-year-old IT worker wants the government to enact ‘Crown Use’, which would see Britain ignore Vertex's patent and permit cheaper ‘generic’ versions of Orkambi to come to market.
“That would see a version of the drug available for people for around £15,000 a year,” she said. “It is a last resort, nobody wants this to happen, but people need these drugs now.”
Vertex, which last year made £2.41billion in profits, have argued that Crown Use would ‘significantly weaken incentives for future innovation’, but the company last week pulled out of talks with Shadow Health Secretary, Jon Ashworth, who has also been trying to broker a deal, and has been reluctant to come back to the table with NHS bosses.
It is estimated that in the three years since Orkambi has been unavailable to NHS patients, up to 220 cystic fibrosis sufferers in the UK, who otherwise could be alive, have died.
“For Josh, if he started taking the drug now, it could extend his life by about 18 years—if he had got the drug a few years earlier, it could have given him another 23 years,” Mrs Beviere said.
Local MP, Greg Clark, said he was in talks with Matt Hancock about the deadlock.
He told the Times yesterday: “This is an issue that affects a number of families in Tunbridge Wells, many of whom I have met at my advice surgeries.
“It’s been distressing to hear about the impact that not being able to access Orkambi has on Cystic Fibrosis sufferers. On behalf of my constituents, I have been pressing the Secretary of State for Health to do everything he can to try and resolve this matter.”
A spokesperson for the Department of Health and Social Care said in a statement: “It is absolutely right that patients should have access to cost-effective, innovative medicines on the NHS at a price we can afford.
“Despite being offered in the region of £500m over five years - the largest ever commitment of its kind in the 70-year history of the NHS - Vertex has refused to accept, putting Orkambi out of reach of patients.
“We're aware there may be other avenues open to resolve this issue, but our approach remains urging Vertex to accept NHS England's generous offer.”
The petition to get parliament to discuss the plight of Cystic Fibrosis sufferers in need of Orkambi is available here: https://petition.parliament.uk/petitions/231602