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Access to Orkambi and Symkevi agreed in England

NHS England has today announced that people with cystic fibrosis (CF) living in England who stand to benefit from life-saving drugs Orkambi and Symkevi will receive them as part of a two-year managed access agreement with the manufacturer, Vertex Pharmaceuticals.

The two-year agreement means thousands who have been waiting, in many cases up to four years, for access to the precision medicines will now have access to drugs that have been shown to slow the decline in lung function and reduce hospital admissions. This announcement comes exactly six weeks after the Scottish Government announced a similar five-year deal for Orkambi and Symkevi in Scotland.

There are 8,200 people with cystic fibrosis living in England according to the 2018 Registry report, and approximately 4,387 will stand to benefit from these drugs. Clinicians will be able to begin prescribing these drugs within 30 days.

A binding condition of the deal is that Vertex 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 company has also agreed to a flexible commercial mechanism which will ensure continued patient access to these two medicines following completion of the NICE appraisal. The UK CF Registry, which is maintained by the Trust, will play a vital role in supporting this evidence collection.

David Ramsden, Chief Executive of the Cystic Fibrosis Trust, said: “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.”

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