Please login to the form below

Not currently logged in

UK patient activist group takes aim at Orkambi patent

Calls to bypass patent adds to pressure on Vertex

Just Treatment

The Just Treatment campaign website, including a video message from CF sufferer, 8 year-old Luis.

Pressure is rising on Vertex on access to its cystic fibrosis (CF) drug Orkambi in the UK, with an MP today calling for the government to bypass its patent and provide cheap access to the treatment.

Vertex has been locked in a row with NHS England over Orkambi’s price for three years, and CF campaigners say patients who would have benefitted from the treatment in that time have now died.

Orkambi has a list price of £100,000, but confidential negotiations to agree a lower cost have come to nothing, despite pleas from young sufferers of CF and their families.

NHS England made what it said was its final offer last summer, offering Vertex guaranteed revenues of £500m over 5 years and £1bn over 10 years for all of its CF drugs, including recently approved next-generation treatment Symkevi – a deal which NHS England said was its biggest ever with a pharma company.

But Vertex rejected that offer, and have also withdrawn Symkevi from the appraisal process of cost effectiveness watchdog NICE.

Bill Wiggin

Bill Wiggin MP

A new front has opened up in the battle, with Bill Wiggin, Conservative MP for North Herefordshire set to ask the government to invoke ‘Crown use’ for Orkambi in an adjournment debate in the House of Commons today.

Crown use is a little-known provision in UK law which allows the government to bypass patents and issue a compulsory licence on a medicine if there is deemed to be a serious public health need.

“Vertex refused the largest ever financial offer the NHS has made in its entire history for this medicine,” Wiggin told The Guardian newspaper, which has thrown its weight behind the crown use approach.

Wiggin added: “Crown use licensing can prevent pharmaceutical companies from taking advantage of incredibly vulnerable people.”

The push for compulsory licensing has been driven by a newly-formed patient activist group called Just Treatment.

They say they represent “patients standing up for our NHS against pharmaceutical company greed” and employ the direct action tactics more commonly seen from US patient activists. The group and others such as #OrkambiNow have mobilised support via social media, including a message from David Mitchell and Patients for Affordable Drugs, which is using the same lobbying tactics used by pharma to influence poilcymakers in Washington.

The Just Treatment campaign has been given extra impact by featuring eight year-old CF sufferer Luis, who is appearing in the media, and has written to the Prime Minister Theresa May and Vertex to ask for an agreement.

Vertex issued a statement on Friday, saying it was “determined to find a solution” that allows the NHS to provide patient access to its medicines and which also allows it to re-invest in R&D.

However it made its opposition clear to the Crown Use proposal.

“To invoke Crown Use and provide third parties access to Vertex’s intellectual property would seriously undermine our ability to achieve these goals and would significantly weaken incentives for future innovation.”

The UK government has employed Crown Use on just one prior occasion, when in 1961 then health minister Enoch Powell decided to obtained cut-price versions of antibiotic tetracycline from Italy, against the wishes of patent holder Pfizer.

Bill Wiggin’s use of an adjournment debate in Parliament places no obligation on the UK government however, and it is not expected to invoke Crown Use. Nevertheless, the campaign will place more pressure on Vertex to agree to the UK pricing demands.

Vertex, NICE and NHS England will all be cross-examined about the price negotiations in a forthcoming inquiry by the Commons Health Select committee. It is now gathering evidence ahead of hearings in Westminster, which are set to begin on 7 March.

NHS England’s head of specialised commissioning John Stewart fired another salvo in the public war of words with Vertex last week.  Writing to the committee’s chair Dr Sarah Wollaston MP, he called Vertex an “extreme outlier” in pricing and behaviour’.

Article by
Andrew McConaghie

4th February 2019

From: Healthcare



COVID-19 Updates and Daily News

Featured jobs


Add my company

Seven Stones is a creative, independent healthcare communications agency of movers and thinkers. We've been doing health differently since 1991....

Latest intelligence

Robust Review: COVID19 Assessment
See how our client utilized Rapid Payer Response (RPR) to stay informed and gain continuous insights during the recent global pandemic (COVID19)...
Human behaviour - Sept 21
All change – how untangling human behaviour can encourage better health
Driving better patient outcomes through clear, achievable practical steps that are underpinned by transparent evidence...
Health literacy in the time of COVID-19
In a time when much of the media’s focus is on the ongoing COVID-19 pandemic and the differences in vaccination rates between various regions, countries, and socioeconomic groups, improving health...