A group of UK parents have been driven to take matters into their own hands to gain access to the cystic fibrosis treatment Orkambi, which is currently unavailable to most patients in the country.
Orkambi has been at the centre of a three and a half year stand-off between the NHS and its manufacturer Vertex over its price, even though the drug could potentially be the difference between life or death for some patients.
Despite renewed attempts to agree a deal, there is no sign of a breakthrough, and the parents have formed their own ‘buyers’ club’ to purchase cheaper generic copies of the drug from abroad.
The group says any parents or patients interested in buying generic Orkambi through the club can find out more at www.cfbuyersclub.org
Vertex’s patents protect Orkambi in the UK, but the law allows private individuals to import generic copies from abroad, in this case Argentina, where there is no patent covering the drug and a cheaper copy is available.
The company that makes the drug in Argentina – Gador – is currently asking £23,000 per patient per year, which it says it will reduce to £18,000 if the buyers’ club can get at least 500 members.
Even at 23,000, the cost of importing the generic version is at least 70% lower than Vertex’s list price of 104,000 a year, which parents have to pay for themselves out of their own pockets.
Emily Birchall, the parent of a child with CF eligible for Orkambi was involved in setting up the buyer’s club:
“My child could benefit hugely from Orkambi and future medicines in development by Vertex. But after following years of failed negotiations I couldn’t just sit and wait for a deal which appeared unlikely given Vertex’s outrageous asking price. One of our group tracked down this company making a generic version of the medicine and suddenly it seemed like there was a feasible solution in our hands.
The group was careful to approach the buyers’ club methodically, checking that it was legal, and learning from other buyers’ club for hepatitis and HIV medicines.
They also paid for independent test to ensure the drugs were safe and effective copies of Orkambi.
Emily is angry at Vertex for demanding such a high price for its product.
“It is an outrage that Vertex’s behaviour is forcing parents to these extremes to get their children the medicine they need. The government must step in to provide a solution for all NHS patients, not just the ones that can afford the generic, or can fundraise to pay for it.
The group wants the government to use its compulsory licensing laws, called Crown Use licence to bypass Vertex’s UK patents and procure these cheaper copies for use on the NHS.
“It’s time they rejected Vertex’s greedy extortion and buy an affordable version of Orkambi that will save lives and save money for our NHS.”
Earlier this year, health ministers more or less ruled out using the Crown Use licence, arguing that the legal costs and compensation to Vertex could outweigh any saving.
The buyers’ club is a dramatic development, which pulls the rug from under the feet of Vertex and NHS England, who have resumed negotiations behind closed doors in recent months.
Charity the Cystic Fibrosis Trust tweeted in response to the news:
“People taking matters into their own hands starkly demonstrates people with cystic fibrosis have been failed over last 3 years. What we need right now is solution that delivers for all. This means comprehensive deal between NHS England and Vertex with no more excuses or delay”.