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NHS Cystic Fibrosis Deal with Vertex - More Life Saving Medicines Available?

on Thursday, 14 November 2019.

When Vertex brought out some cutting edge life-saving medicines to treat cystic fibrosis, there was much jubilation amongst patients and their family and friends.

There was one problem - the amount of money that Vertex was asking to be paid for the drugs meant that the NHS could not afford to take them. This created much controversy - there were fantastic new medicines that could really make a difference, but British patients would not be able to benefit.

On the other hand, Vertex had a valid justification - estimates are that it can cost over one billion dollars to bring each new medicine to market, so pharma companies need to be fairly recompensed for the research and development cost, and to incentivise them by allowing them to make a profit on top.

Vertex's refusal to drop its price was controversial - patients were continuing to suffer. So what to do?

Fortunately, it appears that pragmatism has prevailed with a keen spirit to work together on both sides.

NHS England has announced it has secured a commercial agreement with Vertex to make available all three of its UK-licensed cystic fibrosis medicines to NHS patients - Orkambi, Symkevi and Kalydeco. Around 5,000 people can now receive these treatments. There is no cap on patient numbers, so every patient in England can now get them free on the NHS.

The commercial terms are confidential, but Matt Hancock, the Health Secretary, hailed them as providing good value for British taxpayers. He said: “That fact also means that any drug company wanting to succeed commercially in this field needs to work constructively with the NHS. I’m pleased that Vertex has now agreed a deal that is good for our patients and fair to British taxpayers.”

A binding condition is that Vertex has to submit its full portfolio to the National Institute for Health and Care Excellence (NICE) for comprehensive appraisal.

Over the last two years, as envisaged by the Accelerated Access Review, NHS England has established an expert commercial drugs team to work closely with the pharma industry and NICE, and has negotiated several innovative deals, allowing new and promising treatments to be available for NHS patients. These include:

  • The first full access deal in Europe for CAR-T therapy via the Cancer Drugs Fund, potentially curing people with blood cancers where other treatments have failed.

  • A deal to make ocrelizumab, an innovative multiple sclerosis drug available.

  • A ground-breaking deal which could eliminate Hepatitis C.

  • A £300 million saving after negotiating deals with five manufacturers on low cost versions of the health service’s most costly drug, adalimumab.

  • Reaching a deal to make the life-extending lung cancer drug pembrolizumab available for routine use on the NHS.

  • A deal to make nusinersen available – the first treatment that targets the underlying cause of spinal muscular atrophy.


This is fantastic to see. A pharma company working closely with the NHS to enable patients to benefit, and for the pharma company to be paid for use of its drug. Progress with drug development is important for patients, but there is no point creating the drugs that are beyond the budgets of payers. Then, the drug manufacturer gets no payback on its investment. Hopefully, the terms are such that the pharma company gets a fair price, even if not the one it originally wanted, while patients will be able to benefit from this game-changing medicine.

If you have a particular interest in these areas, please let us know; we would love to hear from you. Please share your thoughts with Paul Gershlick in our Pharmaceuticals and Life Sciences team on 01923 919 320, or complete the form below.


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