Thousands of packs of cystic fibrosis drug destroyed amid pricing deadlock

Thousands of packs of a key cystic fibrosis drug expired and were destroyed amid a row over its cost to the NHS, it has been revealed.

Talks between Vertex Pharmaceuticals and the NHS over the pricing of Orkambi, which could dramatically improve the health of around half of people with the condition, have dragged on for three years with no breakthrough.

Evidence submitted to the Health and Social Care Committee states 7,880 boxes of Orkambi, each containing a 28-day supply, had to be thrown away in 2018.

The drugs had been manufactured in 2015 and 2016 to supply 13 countries, including the UK, but reached their expiry date before they could be used.

The Cystic Fibrosis Trust described the revelation as “heartbreaking”.

The written evidence, submitted by Vertex and published on Wednesday, follows a question to the company during a committee hearing on March 7.

At the time, Stuart Arbuckle, Vertex’s chief commercial officer, said: “I do not believe that we have had any stock go out of date and be destroyed.

“We use our stock in the supply chain to supply countries around the world; we do not package it up until we are due to be selling it.
“I am not aware of any, but we can certainly get you the number.”

The letter to the committee said the finished Orkambi product has a shelf life of two years under controlled room temperature.

It added: “Vertex continues to hold significant inventory reserves of Orkambi to ensure that we can fulfil our obligations across the EU and also uphold our commitment to the committee to supply medicines to every patient in England within four weeks of a successful resolution to our negotiations.”

David Ramsden, chief executive at the Cystic Fibrosis Trust, said: “It’s heartbreaking that packets of life-saving drugs have been thrown away because they’re out of date – what a desperate waste.

“Thousands of people have suffered while these drugs have been sitting on the shelf.

“It is vital the talks that have started deliver a real result now.

“All parties involved must reach a deal immediately so that we can put an end to any further unnecessary death and deterioration.”

The Department of Health and Social Care has insisted that an offer put forward by NHS England for the drug was the “best possible”.

Vertex rejected the offer saying it is below the price paid by other countries.

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