The Orkambi Buyers Club was created to access cheaper versions

A group of British parents have been pushed to take control of access to treatment for Orkambi Cystic Fibrosis, currently inaccessible to most patients in the country.

Orkambi is at the center of a three and a half year confrontation between the NHS and its manufacturer Vertex over its price, although the drug could potentially make the difference between life or death for some patients.

Despite new attempts to reach an agreement, there is no record of a breakthrough and parents have created their own "buyers' club" to buy cheaper generic copies of the drug abroad.

The group says that all parents or patients interested in buying generic Orkambi by the club can find out more about www.cfbuyersclub.org

Vertex patents protect Orkambi in the UK, but the law allows individuals to import generic copies from abroad, in this case Argentina, where no patent covers the drug and where a copy less dear is available.

The company that makes the drug in Argentina – Gador – is currently claiming £ 23,000 per patient per year, which will be reduced to £ 18,000 if the buyers' club can have at least 500 members.

Even at 23,000 euros, the cost of importing the generic version is at least 70% lower than the Vertex catalog price (104,000 euros per year), which parents must badume themselves.

Emily Birchall, the mother of a child with CF and eligible for Orkambi, helped create the Buyers Club:

"My child could benefit enormously from Orkambi and future Vertex developing drugs. But after years of fruitless negotiations, I could no longer just wait for an agreement that seemed unlikely given the excessive price demanded by Vertex. One of the members of our group found this company that was manufacturing a generic version of the drug and suddenly, it seemed to us that there was a feasible solution in our hands.

The group took care to methodically approach the buyers 'club, checking its legality and drawing inspiration from other buyers' clubs for hepatitis and HIV drugs.

They also paid an independent test to make sure the drugs were safe and effective copies of Orkambi.

Emily is angry with Vertex for asking for such a high price for her product.

"It is outrageous that Vertex's behavior forces parents to use these extremes to get the medications they need. The government must step in to provide a solution for all NHS patients, not just those who can afford the generic or who can raise money to pay for it.

The group wants the government to use its compulsory licensing laws, called Crown Use licenses, to circumvent Vertex's UK patents and get those cheaper copies for use on the NHS.

"It's time that they reject 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 the use of the Crown's use license, claiming that Vertex's legal costs and compensation could offset any economy.

The Buyers' Club is a spectacular development, which has eluded Vertex and NHS England, who have resumed closed negotiations in recent months.

The charity trust of Cystic Fibrosis tweeted in response to the news:

"The people who are taking charge are blatantly showing that people with cystic fibrosis have failed in the last three years. What we need now is a solution that offers benefits to all. This means a global agreement between the NHS England and Vertex, without excuses or delays.

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