Just Treatment's response to the Scottish Orkambi decision
We are absolutely devastated by the news today that Orkambi and Symkevi will not be made universally available on the NHS in Scotland.
The Scottish Medicines Consortium (SMC) have said that Vertex’s “justification of the treatment’s cost in relation to its health benefits was not sufficient and in addition the company did not present a sufficiently robust clinical and economic analysis to gain acceptance”.
Vertex’s insistence on extortionate prices for its cystic fibrosis drugs means the SMC are the latest approval body to be unable to recommend funding, despite an incredible amount of hard work from everyone involved at the SMC, campaigners and politicians. At a list price of £104,000 per patient per year for Orkambi, Vertex’s prices are impossibly high for even the wealthiest health systems. Vertex is simply pricing Scottish patients, and indeed half of the world’s patients, out of access to life-saving and life-extending drugs. It is emboldened to do so with a monopoly that is protected by patents.
Christina and her son Luis on Victoria Derbyshire the morning of the SMC decision.
The Scottish and UK governments must now stand on the side of people suffering with cystic fibrosis as a matter of urgency. They must put access to medicines above drug company interest. This must now include overturning Vertex’s patent and delivering access to an affordable, generic version of Orkambi. Whether this is by invoking a Crown Use License or embarking on a large scale clinical trial, public health must come first. The situation can simply not be allowed to endure any longer.
Patients in Scotland are now likely to be forced to turn to the Cystic Fibrosis Buyer’s Club - joining the ever growing number of desperate patients and parents who are preparing to take matters into their own hands by importing quality copies of Orkambi for a fifth of the price Vertex are demanding.
“We will not allow our loved ones to be disregarded and remain untreated any longer.”
Christina, a Just Treatment patient leader whose 9 year old son, Luis, has cystic fibrosis, said:
“I’m absolutely devastated to learn that Scottish patients, who have waited so long, will still not be able to access Orkambi or Symkevi on the NHS in Scotland. I really hoped that Vertex would be willing to moderate it's excessive prices at this time. Yet the SMC ruling confirms Vertex is still making demands that it simply can't back up with evidence - although no details of the proposed Patient Access Scheme are given. The government must make a stand now and look at other ways to source these drugs for all patients and not expect us to continue waiting indefinitely with any more false dawns.”
“I call on Scottish patients to join us in the CF Buyer’s Club to gain access to generic drugs as soon as possible. We are using the power of numbers to negotiate prices with generic suppliers from countries where Vertex does not have a patent and will import them for private use using a legal exemption. We will not allow our loved ones to be disregarded and remain untreated any longer. I will not accept anyone telling me that a company patent is to be respected above my child's right to a longer life.”