Response to Scottish Government decision to fund Orkambi and next steps in England

Last month the independent Scottish Medicines Consortium assessed that Vertex’s ‘justification of the treatment’s [Orkambi and Symkevi] costs in relation to its health benefits was not sufficient’: meaning the company was charging an unreasonably high price for its product.

Vertex has rejected the health service’s offer, which would give access to the treatment for people with cystic fibrosis (CF), at a price assessed as appropriate for the clinical effectiveness of the medicine. It was the largest offer the NHS has ever made for a treatment of its kind.

Therefore it is regrettable that Vertex continues to choose not to engage with the National Institute for Health and Care Excellence (NICE) but invests energy into political lobbying instead.

This is clearly disappointing and we continue to work with the company on how we can make its treatments available.

Across the globe, we know that many other countries have had similar experiences.

Sadly Vertex remains an extreme outlier in its monopoly pricing, which is why a number of countries – including for example Switzerland, New Zealand, Belgium and Spain – have also been unable to get Vertex to make Orkambi available to their patients.

Decisions on funding for treatments are always difficult and complex which is why there is a longstanding, world-leading and tried and tested approach – led by clinicians and not politicians – to establish the clinical effectiveness and value for money offered by proposed treatments.

The NHS cannot offer a blank cheque to an individual company at the expense of our ability to provide a wide range of treatments to as many people as possible.

Over the past year working with a wide variety of responsible pharmaceutical companies the NHS in England has secured life-saving, life-changing drugs for patients, including new treatments for haemophilia, rare cancers, multiple sclerosis, muscle-wasting in children and, just this week, Batten Disease.

We want to reassure patients in England that in the absence of Vertex accepting a reasonable, fair and generous offer, the NHS continues to look at, and design, viable alternative solutions to bringing treatments to cystic fibrosis sufferers.

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