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NHS makes new offer for cystic fibrosis drugs

Friday 24th May 2019
Negotiations continue between the NHS and Vertex Pharmaceutical over the price of drugs that could treat cystic fibrosis.
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The NHS has made a new offer to a drug company to provide medicine for potentially thousands of cystic fibrosis sufferers. Vertex Pharmaceutical manufactures a drug called Orkambi, which is only the second medicine licensed to treat cystic fibrosis in the UK. However, the company has not been able to reach an agreement with the NHS over price.

Talks have been ongoing since July 2018, when the health service offered Vertex £500 million over five years for Orkambi and two other drugs, one of which was in development. However, the pharmaceutical company wanted £105,000 per patient, and talks broke down. John Stewart, NHS England’s national director of specialised commissioning, revealed that a new offer has now been made.

Mr Stewart could not confirm the financial nature of the offer due to it being commercially sensitive. However, he stated that NHS England has proposed a two-year, managed-access arrangement for Orkambi and another drug, Symekvi. 

This period would be used to collect data, allowing The National Institute for Health and Care Excellence (NICE) to make an informed decision about recommending them. Mr Stewart added that the NHS has “proposed a significant increase in the per-patient, per-year price” for each of the drugs.

However, as part of this offer Vertex would have to agree to provide the NHS with a rebate if NICE concluded that the price of the drugs was too high. Mr Stewart said this was important “in order to safeguard taxpayers’ interests”.

The Cystic Fibrosis Trust estimates that nearly 3,300 people could benefit from Orkambi, as it treats the F508del mutation that affects roughly 50 per cent of people who suffer from the disease. Initial research suggests the drug can slow down sufferers’ decline in lung function by 42 per cent.

Written by James Puckle

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