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Ministers urge manufacturer to reduce cystic fibrosis drug price


23 Apr 2018

Ministers have called on a manufacturer to reduce the price of a cystic fibrosis drug as a matter of the ‘utmost urgency’.

Pharmacy minister Steve Brine and health minister Lord O’Shaughnessy recently wrote to Vertex Pharmaceuticals Ltd to lower the price of its cystic fibrosis (CF) drug Orkambi.

The letter, seen by The Pharmacist, comes after the Petitions Committee conducted a debate on a petition – which gathered 116,739 signatures as of 23 April – demanding access to the life-changing drug on the NHS.

At the moment, the drug is only provided in rare cases on compassionate grounds, as it is not cost-effective under the deal proposed by the manufacturer, according to the Department of Health and Social Care (DHSC).

A Vertex spokesperson said it hopes it can come to an agreement with NHS England that ‘benefits all eligible patients equally, as soon as possible’.

‘Utmost urgency’

The Ministers’ letter to Vertex read: […] ‘We ask you as a matter of the utmost urgency to proceed with negotiations in a way that is constructive and supports our joint aim of securing access to your medicines currently licenced in the UK at a price that is cost-effective and fair.

‘We urge that you provide all available data supporting the cost-effectiveness of your proposal promptly to ensure progress towards an agreement.

‘As the Minister who responded on the day and as the Minister responsible for medicines pricing and regulation, we are writing to you to ask you to bring these negotiations to an urgent resolution.’

‘Meaningful dialogue’

A Vertex spokesperson said: ‘We’re pleased that the Government is in agreement that we urgently need to find a solution to get our medicines to CF patients as soon as possible and are encouraged that we already have a date in the diary in the coming days to start a meaningful dialogue.

‘The current counter offer amounts to a refusal to make any additional funding available for orkambi (lumacaftor/ ivacaftor) or future medicines.

Drug benefits

Orkambi is the second drug licenced for people suffering from CF after Kalydeco. The charity Cystic Fibrosis Trust said that the drug can slow decline in lung function, which is the main cause of death among people with CF, by 42%.

CF is a genetic condition that causes 10,400 people in the UK to suffer from lung infections and digestive problems, according to the charity.

In 2016, the National Institute for Health and Care Excellence (NICE) rejected the drug’s use in England due to uncertainty around its long-term value and impact, as a one-year course of treatment costs £104,000 VAT excluded, according to the drug watchdog.


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