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Orkambi: Drugs maker says NHS ‘undervalues’ patient lives

4:36 am, 20th July 2018

US pharmaceuticals company Vertex has called on the NHS to return to the negotiating table after price negotiations over its drug Orkambi broke down.

In an unusual development, details of the negotiations have become public in an increasingly bad-tempered row.

Vertex has been accused of blackmail by MPs after its chief executive wrote to the prime minister suggesting he might reduce investment in the UK if the drug was not made available on the NHS.

Earlier this week, the company dismissed an NHS offer worth £500m over five years and up to £1bn over 10 years, but now say they want to reopen negotiations.

Orkambi’s list price is £104,000 per-patient per-year, and Vertex says the NHS offer is worth just £14,000 per head. The NHS has also proposed including two drugs in development in the deal.

“If you look at the offer the NHS has made, essentially they are asking for a 90% a discount for our current and future medicines compared to what the German government is paying for Orkambi, our approved medicine,” Stuart Arbuckle, Vertex’s chief commercial officer, told Sky News.

“We think that is a clear demonstration that the NHS is undervaluing the benefits these medicines can have for people living with cystic fibrosis.

“We have formally requested that Simon Stevens, head of the NHS, meet with our chief executive Jeff Leiden in the hope that we can bring this to successful conclusion for CF patients in the UK.”

Orkambi is the first drug to treat the underlying condition rather than just the symptoms of cystic fibrosis.

Cystic fibrosis is a result of a genetic mutation that causes the lungs to produce too much mucus, but Orkambi has been shown to significantly improve lung function.

There are around 10,000 people with the condition in the UK, around 12% of the global total, making it a crucial market for Vertex.

Orkambi was rejected for general NHS prescription by the National Institute for Health and Care Excellence (NICE), which ruled its pricing was “unsupportable” in 2016.

Since then the NHS and Vertex have been trying to reach a deal at a price the health service believes it can afford.

The UK is not the only country that has failed to reach a deal for Orkambi.

Australia, Canada and some US states, including New York, have baulked at the price.

Vertex counter that Ireland, Germany, Austria and the Netherlands have all agreed deals for their patient populations.

The dispute highlights the ongoing challenge for the NHS and other public health systems in meeting the cost of ever-more complex treatments as well as rising demand.

NHS England has reached discounted deals in the last year for new lung and breast cancer drugs, but is currently not indicating it will move on Orkambi.

A spokesperson for NHS England said: “This country has a long established, internationally-respected independent body NICE which recommends whether or not a drug company is proposing a fair price. NICE has been clear that Vertex’s pricing is unsupportable.

“If Vertex really believe they are offering a reasonable deal they should waive their confidentiality clause and let patients and taxpayers judge whether it is fair.”