NHS England to Follow Scotland in Prescribing CF Drugs

Nicky Broyd

October 24, 2019

Within 30 days clinicians in England will be able to prescribe the cystic fibrosis medicines ivacaftor-lumacaftor (Orkambi), ivacaftor-tezacaftor (Symkevi), and Kalydeco (ivacaftor), all made by Vertex Pharmaceuticals.

At a cost of £104,000 a year per patient, ivacaftor-lumacaftor had been rejected for not being a cost-effective use of resources but after years of negotiations it has now been made available following a confidential commercial agreement.

Health Secretary Matt Hancock said in a statement: "We’ve agreed a deal to provide Orkambi and other lifesaving cystic fibrosis drugs on the NHS. The deal is great value for money for the NHS, and crucially, will improve thousands of lives. This deal – on the back of several others this summer – shows why we get some of the best value drugs in the world, and is another reason to be so proud of our NHS."

Six weeks ago NHS Scotland also secured a confidential agreement with the company for CF drugs which have been shown to slow the decline in lung function  and reduce hospital admissions.

The Deal

The agreement provides access to all three drugs for all current licensed indications, as well as any future licence extensions and is consistent with NHS England’s other managed access agreements.

According to the Cystic Fibrosis Trust a binding condition of the deal is that Vertex Pharmaceuticals will submit its full portfolio – including in due course its new triple therapy, Trikafta – to the National Institute for Health and Care Excellence (NICE) for appraisal.

The Trust also says the company has agreed a flexible mechanism which will ensure continued patient access to the three medicines following completion of the NICE appraisal.

Meindert Boysen, director of the Centre for Health Technology Evaluation at NICE, said in a statement: "We are pleased an agreement has been reached between NHS England and Vertex that brings these medicines to patients. It is also welcome that the company will now re-engage with the NICE process.

"We look forward to working with the company and patient organisations to get ready for the appraisals, including developing the approach to the collection of evidence."


Chief Executive of the Cystic Fibrosis Trust, David Ramsden, commented in a statement: "This is a very special day and I want to thank people with cystic fibrosis, their families and everyone who has been part of this campaign for their persistence and determination to keep on fighting. We know it doesn’t end here – we will continue to fight for similar access in Wales and Northern Ireland so that all people with cystic fibrosis in the UK are able to benefit from these life-saving drugs.

"Also, with news that the new triple therapy, Trikafta, which 90% of people with cystic fibrosis could stand to benefit from, could be licenced for use in the coming year, we will continue to campaign so that people with cystic fibrosis never have to wait again for the best available medicines."

Editor's Note, 13th November 2019: The Welsh Government today announced an agreement with Vertex to supply the drugs on equivalent terms for NHS patients in Wales. High priority patients should receive the treatments next month with all eligible patients being offered treatment from 2020. Yesterday, Northern Ireland's Department of Health said arrangements were being put in place to begin prescribing the drugs to the first eligible patients "within the next few weeks". 


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