Wales joins rest of UK by reaching a deal on Orkambi and Symkevi

News -

The Welsh Government today announced that a deal has been agreed in principle for people with cystic fibrosis (CF) living in Wales who stand to benefit from life-saving drugs Orkambi and Symkevi, meaning that everyone in the UK will have access to the most advanced licensed therapies.

There are 402 people with CF living in Wales according to the 2018 Registry report, and approximately 190 could stand to benefit from these drugs.

David Ramsden, Chief Executive at the Cystic Fibrosis Trust said: “It is great news that all countries in the UK now have access to the life-saving CF drugs Orkambi and Symkevi. This has been a hard-fought four-year battle, which has caused real damage and pain and I want to thank everyone who has been part of this campaign for their persistence and determination.  

“As we mark today, we must look immediately to the future.  The next drug in the pipeline - the triple combination therapy (known as Trikafta in the US) - will deliver a bigger difference to a wider section of the CF community and we must do all we can to ensure there is no repeat of the deadlock and delays in accessing these treatments when they are licensed.”

Thirty eight-year old Beth from Abergavenny has CF and has barely left the house in the last two months, having spent recent weeks fighting infections and complications from a sinus operation. Today's announcement means she may even be able to go back to work one day, and could also improve the quality of life for hundreds of others with CF that stand to benefit from these drugs.

"We've done it - we've took our time but we've done it! What a monumental day. Now the UK can finally celebrate together," said Beth. "My future is looking bright! Orkambi has been groundbreaking and will continue to pave the way for more advanced medicines. I'm so happy and optimistic right now!" 

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