£60m worth of out-of-date breakthrough cystic fibrosis drug destroyed in NHS price row

Nearly 8,000 packs of Orkambi, a breakthrough medicine for cystic fibrosis, have been destroyed after exceeding their expiry date during a stand-off between the NHS and supplier over high prices.

US company Vertex revealed in a letter to the Health and Social Care Committee that it had distributed more than 80,000 packs of Orkambi for commercial sale in the EU since 2015, and in 2018 7,880 packs had to be destroyed.

Orkambi was licensed for use in the UK in 2015, and treats the underlying causes of a specific form of cystic fibrosis for the first time in England, stopping its progression. This form of the disease affects more than 10,000 patients each year.

But the NHS does not currently offer patients the drug as Vertex has been in dispute with the NHS for over two years over the high price it wants to charge for the drug at £105,000 per patient per year.

NHS England says Orkambi is not cost-effective and the bill to provide it would be unaffordable, whilst Vertex has said it has offered the “best price in the world,” and also rejected a counter-proposal of £500m over five years.

Other countries in Europe with smaller numbers of patients affected by the disease have agreed to the high price in order to give patients access before negotiating the price downwards.

Sharon Hodgson, the shadow minister for public health, called the waste of the drugs a “disgrace” and said that thousands of cystic fibrosis patients across the UK were still waiting for Orkambi to become available on the NHS.

At £100,000 per patient per year, Hodgson said over £60m worth of drugs were destroyed.

Hodgson said in a tweet: “This is an outrage when cystic fibrosis patients suffer; desperately needing these drugs to alleviate their symptoms! Vertex should commit to not destroying these drugs again.”

Vertex disclosed the number following hearings this month, with the chief executive of Vertex Jeff Leiden trying to explain why the stalemate has continued after negotiations ground to a halt last summer.

The letter said the company holds stock in the UK for purposes of supplying medicine across the UK and other countries.

Vertex said it continues to hold significant inventory reserves of Orkambi to ensure it can fulfil its obligations across the EU and uphold its commitment to the committee to supply medicines to every UK patient within four weeks of a resolution to the negotiations.

Image credit - Dominic Lipinski/PA Archive/PA Images


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