NHS England wants Vertex Pharma to waive its non-disclosure agreement on the price it intends to charge for cystic fibrosis drug Orkambi so the public can “form their own judgment” on the controversial case.
In a letter to chief executive of the Cystic Fibrosis Trust David Ramsden, NHS England’s national director for specialised commissioning – John Stewart – writes that Vertex is relying on the NDA to “hide from the public the prices it is trying to charge”.
Stewart goes on to say that NHS England has placed a final offer on the table that “provides the potential” for Vertex to secure revenues of £1bn over the next 10 years from licensed drugs Orkambi and Kalydeco, follow-up Symdeco and a triple therapy in late-stage testing, without having to wait for National Institute for Health and Care Excellence (NICE) appraisals.
It would raise the number of CF patients receiving Vertex’ drugs from 450 to 5000 this year, he asserts, and is the “largest ever financial commitment of its type in the 70-year history of the NHS”.
Vertex has responded coolly to the new offer – which comes after almost two years of negotiations – saying it believes it still doesn’t reflect the value of the therapies but adding that the company “stands ready to meet to find a productive path forward.” It previously said the lack of progress was “outrageous” that the UK government did not see the value of its medicines.
Meanwhile, Ramsden has tweeted that while the “headline numbers look big” he is concerned that the they “don’t reflect the difference the pipeline of drugs will make”.
Vertex’s list price for Orkambi is around £100,000 a year per patient, although discounts would see this lowered considerably. The discounts being offered by Vertex and sought by the NHS are still confidential but, according to a BioCentury article, Vertex says the offer is equivalent to around £14,000 per patient per year, which is an almost 90% discount to what Germany reimburses for Orkambi.
Earlier this month, Vertex wrote directly to Prime Minister Theresa May saying that NHS England and NICE’s stance on Orkambi was threatening biotech investment in the UK.
Orkambi was approved for sale in Europe in 2015, but was turned down by NICE the following year and has remained available only on compassionate grounds ever since. Both the company and NHS England have come under strong criticism for thrashing over their differences in the press without taking into account the impact that can have on patients desperate for an end to the deadlock.