Breakthrough on Orkambi and Symkevi in Scotland

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The Scottish Government has announced a new interim deal that will see access to Orkambi and Symkevi for everyone with cystic fibrosis (CF) in Scotland who stands to benefit, after reaching an agreement with manufacturer Vertex with support from the UK CF Registry.

The five-year agreement means hundreds 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.

The deal requires Vertex to resubmit the two drugs to the Scottish Medicines Consortium during the agreement period, using new data collected through NHS prescribing. 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 landmark moment for the hundreds of people with CF and their families across Scotland who have tirelessly campaigned for years to access these drugs. This breakthrough is a victory for their perseverance and enduring hope. It means 350 eligible people living in Scotland will have access to drugs that stabilise their lung health and reduce the need for hospital admissions.

“We celebrate the news in Scotland today, but our campaign must continue to focus on Vertex and all parties in England, Wales and Northern Ireland. Those in need of the drugs have already waited too long and we must ensure that thousands more people are not subjected to a postcode lottery. Scotland’s success must now be replicated across the UK without further damaging delay.”

In August supporters from the Trust demonstrated outside Vertex headquarters to keep up the pressure after previous negotiations with the Scottish Government fell through.

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