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The Just Treatment campaign website, featuring a video message from Luis, an 8-year-old CF sufferer.
The pressure is mounting on Vertex for access to its Orkambi drug for the treatment of cystic fibrosis (CF) in the UK. One MP today called on the government to circumvent its patent and provide inexpensive access to treatment.
Vertex has been stuck for three years with the NHS England on the Orkambi award, and CF activists say the patients who would have benefited from the treatment at that time are now dead.
Orkambi has a catalog price of £ 100,000, but confidential negotiations have been concluded with a view to achieving a lower cost, despite the demands of young CF victims and their families.
NHS England did what it said was its final offer last summer, offering Vertex guaranteed revenue of £ 500 million over 5 years and £ 1 billion out of 10 years for all of his FK medications, including the newly approved Symkevi new generation treatment said was his greatest ever with a pharmaceutical company.
But Vertex rejected this offer and also removed Symkevi from the process of evaluating cost-effectiveness monitoring, NICE.
Bill Wiggin, MP
A new front has opened in the battle: Bill Wiggin, Conservative MP for North Herefordshire, must ask the government to invoke "the use of the Crown" for Orkambi in an adjournment debate in the House of Commons today.
Crown use is a little-known provision in UK law that allows the government to circumvent patents and issue a compulsory license for a drug if the public health needs are deemed serious.
"Vertex has refused the biggest financial offer ever made by the NHS during its entire history for this drug," Wiggin told The Guardian newspaper, which put all its weight in the approach to the "big deal". use of the crown.
Wiggin added, "Crown licenses can prevent pharmaceutical companies from taking advantage of extremely vulnerable people."
The compulsory license application was motivated by a group of newly formed patient activists called Just Treatment.
They say that they represent "patients who defend our NHS against the greed of pharmaceutical companies" and use the most commonly seen direct action tactics in American militant patients. The group and others, such as #OrkambiNow, have mobilized their support via social media, including a message from David Mitchell and Patients for Affordable Drugs, which uses the same lobbying tactics as the one used by the group. pharmaceutical industry to influence hair manufacturers in Washington.
The Just Treatment campaign had an additional impact by starring Luis, an eight-year-old CF patient, who appeared in the media and wrote to Prime Minister Theresa May and Vertex to ask for an agreement.
Vertex issued a statement Friday in which he said he was "determined to find a solution" allowing the NHS to allow patients to access his medicines and also allowing him to reinvest in R & D.
However, he clearly expressed his opposition to the proposal for the use of the Crown.
"Invoking Crown Use and giving third parties access to Vertex's intellectual property would seriously compromise our ability to achieve these objectives and significantly weaken incentives for future innovation."
The UK government used Crown Use only once before, while in 1961, the Minister of Health, Enoch Powell, had decided to obtain discounted versions of the drug. tetracycline antibiotic from Italy, against the wishes of the patent holder Pfizer.
The use of a debate on Bill Wiggin's postponement to Parliament, however, imposes no obligation on the British government, which should not claim use by the Crown. Nevertheless, the campaign will put more pressure on Vertex to accept UK price requests.
Vertex, NICE and NHS England will all be asked about price negotiations during a forthcoming Commons Health Select committee survey. He is now gathering evidence in anticipation of hearings in Westminster, scheduled to begin on March 7.
NHS England special order manager John Stewart launched a new battle in the word war with Vertex last week. Congresswoman Sarah Wollaston has called Vertex extremely extreme in terms of price and behavior. "
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