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Vertex scores CF deal with Scotland, but access debate continues

Pressure to reach a deal in England mounts

Orkambi

Following an initial rejection from the Scottish Medicines Consortium (SMC), Vertex has reached an agreement for all eligible cystic fibrosis patients living in Scotland to access Orkambi (lumacaftor/ivacaftor) and Symkevi (tezacaftor/ivacaftor).

The five-year agreement will also see Vertex collecting real-world data on its medicines, which will aid in the future submissions of its drugs to the SMC. This is likely to include Vertex’s recently filed triple CF therapy, which promises to treat up to 90% of all cystic fibrosis patients worldwide.

This is the first agreement within the UK for access to Vertex's CF medicines, and comes following a long history of pricing disagreements, most notably between the pharma company, NHS England and NICE.

“The agreement has been reached after extensive discussions between the Scottish Government and Vertex Pharmaceuticals and means the medicines will now be made available to patients on the NHS in Scotland, subject to a confidential discount,” said Scotland’s Health Secretary Jeane Freeman.

Tensions are likely to rise in England following the agreement in Scotland, which is no closer to striking a deal since negotiations first began three years ago.

Vertex has faced harsh criticism from the English government, with health minister Seema Kennedy dubbing the company “an extreme outlier in both pricing and behaviour”.

Frustrated campaigners appealed to the UK government to use a legal loophole known as a Crown Use Licence, which would invoke Vertex’s patents and allow the cheaper manufacture of its drugs.

However, now that Vertex’s CF medicines are reimbursed in 17 countries worldwide, England will face increasing pressure from patient movements to re-start negotiations and close a deal.

The NHS in England offered £500m over five years and £1bn over ten years for access to all of Vertex’s CF drugs, but this was rejected by the pharma company. However, Vertex said it had already offered England its lowest (confidential) price anywhere in the world.

Campaigners and patient groups have continually called for access, and a dedicated buyers’ club has been set up to source the medicines in Argentina, where Vertex does not hold a patent and generic copies can be made and bought at a discounted price.

The generic, made by Gador, is £23,000 per patient per year, with a reduction in price to £18,000 if the buyers’ club reaches 500 members. Orkambi costs £104,000 a year – a major difference in price.

For the approximately 10,000 people living in the UK with CF, this may continue to be the only option to access these medicines, unless the deadlock between the English government and Vertex can be uplifted.

Corbyn orkambi tweet

Labour Party leader Jeremy Corbyn takes aim at Vertex

13th September 2019

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